WELCOME!! I am happy to be back and blogging again! If you scroll down to my first post on my "resurrected" blog you will find an explanation as to why I have been out of the blogging world for awhile!!
On your way down you will find all of my original emails and blogs from my old blog re-posted so if you are new to my blog and want to hear the WHOLE STORY...feel free to check them out!
For those of you who where keeping up with my blog before there are a couple of new blogs I did not get to post before that you may want to read..."My Current Reality" from 4/1/09, "My New Lyme Specialist" from 4/20/09 and my newest posts, "Why...Its the Climb", "Our Current Mountain" and "How Lyme feels on October 9, 2009" from today!
Hope you can take the time to catch up with me on my on-going journey to heal. Would love to hear your comments and feedback as it has been awhile. It would be great if you would like to become a "follower" of my blog so you can hear the latest updates as soon as they come out.
A special WELCOME to all my fellow Lymies and many other who are also fighting chronic illness. Pray you are encouraged, empowered and motivated in ever way to fight another day!
For all those who have been praying and supporting us so diligently, I am so sorry it has taken this long to get a current update posted! I hope you know we love you and think of you and pray for you daily as well...no more long pauses...the blogs will keep comin :)
A promise from a sick women who should not make promises...its made in FAITH!!
PS...Before you read anymore, don't forget to check my DISCLAIMER :) LOL!!
Friday, October 9, 2009
How Lyme feels on October 9, 2009....
I have posted some important new blogs but realized non of them answered the question "How is the Lyme making you feel these days...???" So if you where wondering how I'm doin here is a quick update:
On October 9,2009 I'm bedridden soooo...Lyme is still kickin my but....but I have to say I don't put up with it and I'm kickin right back!! I am doing over 6 therapies a week including Physical Therapy, Massage Therapy, Osteopathic Muscular Therapy (OMT), Acupuncture, Colon Hydrotherapy, In-fared Sauna Therapy and IV Vitamin Therapy along with other IV treatment and antibiotics on and off. Homeopathy and Chiropractic also fall into the mix here and there and I take enough supplements a day to sink a ship...or at least one of my boys bath toys!I am still seeing my Specialist in NYC, Jerry Simons (my life saver:), once a month but I am in NYC every week for the IV treatment. I am also still hard core on my nutritional plan which is KEY to my recovery!
To Heal from Lyme you have to approach it from four directions:
1) Boost the Immune system to...
2) Kill the BACTERIA but, then you must...
3) Detox from the bacteria die off and overload of toxins in your system so you can...
4) Strengthen your body through Exercise, Nutrition and Decreased Stress which leads us back to #1...and around we go
Each one of my above mentioned Therapies fall into one of these four categories and therefore all are crucial to my ongoing recovery! They also take up my ENTIRE week!! I am left to try and fit in all my Mom & Wife responsibilities between my therapies and often bedridden state.
BUT...I am making progress...I was bedridden and wheelchair bound almost daily at the beginning of the year. I am now up and around able to perform basic tasks for up to half a day on many days. I still have a list of symptoms a mile long and new ones come and go due to treatment which is part of the process. Some days I still can't walk and am bed or couch bound but I bounce back quicker than I was and usually a good day isn't far away.
My doctors originally said this would take a few years to get under control due to the length of time I've been sick, but we still hold out hope to a full remission in 2010!
Sending Chronic Lyme into remission is a roller coaster ride. You may feel "symptom controlled" one day and be "symptom overwhelmed" the next. My life changes by the hour but I am secure in the sense that we are doing ALL we can and I believe we will reach our goal of remission...one day at a time!
PS...Please take the time to read my last blog, "Our Current Mountain" as it details what it will take to financially keep me in treatment and working toward recovery!
On October 9,2009 I'm bedridden soooo...Lyme is still kickin my but....but I have to say I don't put up with it and I'm kickin right back!! I am doing over 6 therapies a week including Physical Therapy, Massage Therapy, Osteopathic Muscular Therapy (OMT), Acupuncture, Colon Hydrotherapy, In-fared Sauna Therapy and IV Vitamin Therapy along with other IV treatment and antibiotics on and off. Homeopathy and Chiropractic also fall into the mix here and there and I take enough supplements a day to sink a ship...or at least one of my boys bath toys!I am still seeing my Specialist in NYC, Jerry Simons (my life saver:), once a month but I am in NYC every week for the IV treatment. I am also still hard core on my nutritional plan which is KEY to my recovery!
To Heal from Lyme you have to approach it from four directions:
1) Boost the Immune system to...
2) Kill the BACTERIA but, then you must...
3) Detox from the bacteria die off and overload of toxins in your system so you can...
4) Strengthen your body through Exercise, Nutrition and Decreased Stress which leads us back to #1...and around we go
Each one of my above mentioned Therapies fall into one of these four categories and therefore all are crucial to my ongoing recovery! They also take up my ENTIRE week!! I am left to try and fit in all my Mom & Wife responsibilities between my therapies and often bedridden state.
BUT...I am making progress...I was bedridden and wheelchair bound almost daily at the beginning of the year. I am now up and around able to perform basic tasks for up to half a day on many days. I still have a list of symptoms a mile long and new ones come and go due to treatment which is part of the process. Some days I still can't walk and am bed or couch bound but I bounce back quicker than I was and usually a good day isn't far away.
My doctors originally said this would take a few years to get under control due to the length of time I've been sick, but we still hold out hope to a full remission in 2010!
Sending Chronic Lyme into remission is a roller coaster ride. You may feel "symptom controlled" one day and be "symptom overwhelmed" the next. My life changes by the hour but I am secure in the sense that we are doing ALL we can and I believe we will reach our goal of remission...one day at a time!
PS...Please take the time to read my last blog, "Our Current Mountain" as it details what it will take to financially keep me in treatment and working toward recovery!
Our Current MOUNTAIN...
For any Family one of the greatest fears we face is one of our loved ones being diagnosed with a debilitating or deadly disease! Then...almost more scary is the reality of what it will financially take to FIGHT and WIN the battle for Life!
Dan and I have had to face both these fears since February '08. The following is a letter written on behalf of my husband about our journey and the current financial MOUNTAIN we face...would you take the time to read it (even if you know my story) and possibly consider what you may be able to do to help us "get to the top":
LETTER FROM MY HUBBY...
Hello, my name is Daniel Burd. I appreciate you taking the time to read this letter and consider my family’s current situation and our need for assistance. Let me begin by telling you a little about our family and our full time volunteer work.
My wife, Rebecca, and I have been full time, unsalaried volunteers for a non-profit missions organization called Youth With A Mission (YWAM) since 1995. We are located on the Smithtown campus right here on Long Island.
Over the last 14 years we have co-founded and directed a ministry within YWAM called All Access Productions. We work in public and private schools across the Nation presenting a modern day musical called "No More Victims", confronting the epidemic of bullying and violence within our schools. Our mission is to teach young people to “Speak Life” to one another to stop the violence before it starts, ending the pattern of violent school shootings. We want to see young people attend school without the fear of being bullied, or even worse, the victim of an act of violence.
Our program has been featured at several State Safety Academy Conferences and was highlighted last fall at the International Bullying Prevention Awareness Conference. It has been said by the professionals in the field of education that "No More Victims" is "the most effective anti-violence school assembly program available to schools" today. We have seen over 200,000 young people over the last 14 years in hundreds of schools across the country. You can learn more about our program at www.allaccessny.org.
Along with being the Directors for All Access Productions, our greatest joy is our three beautiful boys Tyler (9), Toby (5) and Malakai (2).
All Access was beginning to peek nationally when everything came to an abrupt halt last year. My wife Rebecca has been chronically ill for over 17 years (since the age of 15) and misdiagnosed with Epstein Bar and Chronic Fatigue Syndrome. On February 1, 2008 her symptoms became very severe, she became bed ridden and wheelchair bound and unable to stabilize after months of rest. After visiting several doctors and being tested for many different conditions, she finally received a positive diagnosis for Late Stage Neurological Lyme Disease along with several tick born co-infections. Despite requests from schools across the country for our program we had to put everything on hold due to the severity of her illness and the intensive therapies that were now a daily part of our lives.
Lyme Disease is very curable in its early stage but having been misdiagnosed for over 17 years the bacteria has taken over Rebecca's body and caused many neurological and debilitating symptoms which can take years of treatment to recover from. Rebecca has been so committed to nutrition and following doctors orders that she is progressing but still suffers from severe weakness, inability to walk at times, debilitating pain in her bones, muscles and joints, severe muscle spasms, tingling and numbness, shortness of breath, loss of memory and other mental fatigue (to name a few of her symptoms) and a basic inability most days to take care of herself and her children. This is an improvement from being totally bedridden earlier this year. We are grateful for the progress but know we have to keep fighting!! Without treatment this disease has taken many lives and Rebecca is in the latest stage of the disease! But we have HOPE...
Rebecca is seeing one of the best specialists for Lyme Disease in the country right here in NYC. This Specialist feels with continued treatment she should be able to go into full remission in the next year. Of course the need for ongoing attention to a healthy life style will be essential throughout her life to keep the disease in remission. Her greatest desire is to be a fully functioning wife and mother once again and to see All Access back in our Nation’s schools by 2011!!
This brings me to the purpose of our letter. We have been under tremendous financial strain since her diagnosis as most of her therapy is not covered by our medical insurance through NY State Medicaid program. All employees of YWAM are unpaid volunteers who rely on donations from friends, families, churches and businesses for our living expenses. We live on a very fixed and small monthly budget but have been willing to do so in order to commit our lives to our passion of helping America’s youth. We have struggled through the years but have always met our monthly bills until these additional medical expenses became overwhelming. I have endeavored to take some side jobs but have been unable to do much as I have become the daily, full time caregiver for my wife and three small children for the last year.
Currently our monthly medical bills are totaling over 100% of our income at $3,500 a month. We had a neighbor plan a community fundraiser for us last November, and a few churches have donated funds to us to help throughout the year. We have been so blessed by the kindness and giving of our community and realize we would not have made it through this year without them! Even with this assistance however, we have still accumulated almost $10,000 worth of medical debt over this last year. This debt is increasing monthly as Rebecca's therapy and doctor visits are ongoing. It is imperative to Rebecca's full recovery that she continue with ALL of these treatments!!
If you have any questions, please feel free to contact me on my cell phone at 631-697-1299. You can also contact me by email at dburd@ywam-ny.com.
To learn more about our family and ministry you can check out our website at www.theburdfamily.com.
As a husband and father I am trusting in God for his provision and healing for my wife and family. I am so grateful for your time and kind consideration in assisting our family! May God richly bless you!
In His Service,
Daniel Burd
Dan and I have had to face both these fears since February '08. The following is a letter written on behalf of my husband about our journey and the current financial MOUNTAIN we face...would you take the time to read it (even if you know my story) and possibly consider what you may be able to do to help us "get to the top":
LETTER FROM MY HUBBY...
Hello, my name is Daniel Burd. I appreciate you taking the time to read this letter and consider my family’s current situation and our need for assistance. Let me begin by telling you a little about our family and our full time volunteer work.
My wife, Rebecca, and I have been full time, unsalaried volunteers for a non-profit missions organization called Youth With A Mission (YWAM) since 1995. We are located on the Smithtown campus right here on Long Island.
Over the last 14 years we have co-founded and directed a ministry within YWAM called All Access Productions. We work in public and private schools across the Nation presenting a modern day musical called "No More Victims", confronting the epidemic of bullying and violence within our schools. Our mission is to teach young people to “Speak Life” to one another to stop the violence before it starts, ending the pattern of violent school shootings. We want to see young people attend school without the fear of being bullied, or even worse, the victim of an act of violence.
Our program has been featured at several State Safety Academy Conferences and was highlighted last fall at the International Bullying Prevention Awareness Conference. It has been said by the professionals in the field of education that "No More Victims" is "the most effective anti-violence school assembly program available to schools" today. We have seen over 200,000 young people over the last 14 years in hundreds of schools across the country. You can learn more about our program at www.allaccessny.org.
Along with being the Directors for All Access Productions, our greatest joy is our three beautiful boys Tyler (9), Toby (5) and Malakai (2).
All Access was beginning to peek nationally when everything came to an abrupt halt last year. My wife Rebecca has been chronically ill for over 17 years (since the age of 15) and misdiagnosed with Epstein Bar and Chronic Fatigue Syndrome. On February 1, 2008 her symptoms became very severe, she became bed ridden and wheelchair bound and unable to stabilize after months of rest. After visiting several doctors and being tested for many different conditions, she finally received a positive diagnosis for Late Stage Neurological Lyme Disease along with several tick born co-infections. Despite requests from schools across the country for our program we had to put everything on hold due to the severity of her illness and the intensive therapies that were now a daily part of our lives.
Lyme Disease is very curable in its early stage but having been misdiagnosed for over 17 years the bacteria has taken over Rebecca's body and caused many neurological and debilitating symptoms which can take years of treatment to recover from. Rebecca has been so committed to nutrition and following doctors orders that she is progressing but still suffers from severe weakness, inability to walk at times, debilitating pain in her bones, muscles and joints, severe muscle spasms, tingling and numbness, shortness of breath, loss of memory and other mental fatigue (to name a few of her symptoms) and a basic inability most days to take care of herself and her children. This is an improvement from being totally bedridden earlier this year. We are grateful for the progress but know we have to keep fighting!! Without treatment this disease has taken many lives and Rebecca is in the latest stage of the disease! But we have HOPE...
Rebecca is seeing one of the best specialists for Lyme Disease in the country right here in NYC. This Specialist feels with continued treatment she should be able to go into full remission in the next year. Of course the need for ongoing attention to a healthy life style will be essential throughout her life to keep the disease in remission. Her greatest desire is to be a fully functioning wife and mother once again and to see All Access back in our Nation’s schools by 2011!!
This brings me to the purpose of our letter. We have been under tremendous financial strain since her diagnosis as most of her therapy is not covered by our medical insurance through NY State Medicaid program. All employees of YWAM are unpaid volunteers who rely on donations from friends, families, churches and businesses for our living expenses. We live on a very fixed and small monthly budget but have been willing to do so in order to commit our lives to our passion of helping America’s youth. We have struggled through the years but have always met our monthly bills until these additional medical expenses became overwhelming. I have endeavored to take some side jobs but have been unable to do much as I have become the daily, full time caregiver for my wife and three small children for the last year.
Currently our monthly medical bills are totaling over 100% of our income at $3,500 a month. We had a neighbor plan a community fundraiser for us last November, and a few churches have donated funds to us to help throughout the year. We have been so blessed by the kindness and giving of our community and realize we would not have made it through this year without them! Even with this assistance however, we have still accumulated almost $10,000 worth of medical debt over this last year. This debt is increasing monthly as Rebecca's therapy and doctor visits are ongoing. It is imperative to Rebecca's full recovery that she continue with ALL of these treatments!!
We would humbly ask if you might consider a gift to our family towards our Medical Debt and in addition may we ask that you may consider supporting our family as missionaries through 2010. This would help to enable us to cover our monthly medical bills and prevent further debt during this coming year. Other than our outstanding medical expenses we have no other financial debt at this time. With your support we will be better able to keep our commitment to living debt free!
If you have any questions, please feel free to contact me on my cell phone at 631-697-1299. You can also contact me by email at dburd@ywam-ny.com.
To learn more about our family and ministry you can check out our website at www.theburdfamily.com.
As a husband and father I am trusting in God for his provision and healing for my wife and family. I am so grateful for your time and kind consideration in assisting our family! May God richly bless you!
In His Service,
Daniel Burd
Why..."Its the Climb"
So some of you are thinking...that title sounds familiar...Miley Cyrus...really Rebecca???? There is a reason for my madness...
Being the mother of 3 young boys the Disney channel is a part of life around here and therefore Hannah Montana has snuck in a few episodes which meant we had to rent the Hannah Montana Movie one family night this past summer.
I have to admit the performing artist in me loved the songs and dancing but the song "The Climb" really hit home for me in a unique way. I had heard it before on the radio but paid attention to the words this time and found it both autobiographical and inspiring as I have realize this journey that I am on is not about the day I am HEALED...it is about each step I take in that direction, the highs and lows, the lessons learned, the milestones reached...simply put...its THE CLIMB!!
Thought I would post the lyrics and maybe you can see a glimpse into that internal struggle I face daily to NEVER GIVE UP!!
I can almost see it,
that dream i'm dreamin but,
there's a voice inside my head sayin, you'll never reach it.
every step im takin every move i make feels lost with no direction,
my faith is shakin,
but i, i gotta keep tryin i gotta keep my head held high
the struggles im facing
the chances im taking
sometimes might knock me down but, no im not breaking
i may not know it but these are the moments that im gonna remember most yeah
just gotta keep goin
and i, i got be strong gotta keep on pushin on cuz
keep on movin, keep climbin
keep the faith
its all about, its all about the climb
keep the faith
keep your faith
Being the mother of 3 young boys the Disney channel is a part of life around here and therefore Hannah Montana has snuck in a few episodes which meant we had to rent the Hannah Montana Movie one family night this past summer.
I have to admit the performing artist in me loved the songs and dancing but the song "The Climb" really hit home for me in a unique way. I had heard it before on the radio but paid attention to the words this time and found it both autobiographical and inspiring as I have realize this journey that I am on is not about the day I am HEALED...it is about each step I take in that direction, the highs and lows, the lessons learned, the milestones reached...simply put...its THE CLIMB!!
Thought I would post the lyrics and maybe you can see a glimpse into that internal struggle I face daily to NEVER GIVE UP!!
THE CLIMB
I can almost see it,
that dream i'm dreamin but,
there's a voice inside my head sayin, you'll never reach it.
every step im takin every move i make feels lost with no direction,
my faith is shakin,
but i, i gotta keep tryin i gotta keep my head held high
there's always gonna be another mountain
im always gonna wanna make it move
always gonna be an uphill battle and sometimes im gonna have to lose
it aint about how fast i get there aint about whats waitin on the other side its the climb
the struggles im facing
the chances im taking
sometimes might knock me down but, no im not breaking
i may not know it but these are the moments that im gonna remember most yeah
just gotta keep goin
and i, i got be strong gotta keep on pushin on cuz
theres always gonna be another mountain
im always gonna wanna make it move
always gonna be an uphill battle sometimes im gonna have to lose
aint about how fast i get there aint about whats waitin on the other side
its the climb
keep on movin, keep climbin
keep the faith
its all about, its all about the climb
keep the faith
keep your faith
7th Blog...My New Lyme Specialist & his protocol (must read for other Lyme sufferes)...dated 4/20/09
Today, Monday, April 20, 2009 I finally had the doctor’s appt I wish would have been possible back in April 1991...it was a long time coming but I am grateful to finally sit down in front of a doctor who not only understands my disease but treats me like a person and communicates in a way I (Lyme brain and all) can understand!!
Thanks to a good friend who informed me of a local Lyme Conference that took place mid-March I was able to hear Gerald Simmons, PA speak about this complicated disease and all its co-infections. I learned more from him in 2 hours than anyone (other than all the books I have read) has been able to teach me since my diagnosis. Gerald Simmons was the Physicians Assistant for what is now one of the most well renowned Lyme Specialist to date, Dr. Joseph Burrascano. He worked along side him for 12 years until he closed his practice. Gerald Simmons is an award winning Physicians Assistant who now serves on multiple boards for tick borne diseases and is up to date on the latest breakthroughs in treating these complicated diseases.
He now works out of The Morrison Center in NYC, a practice dedicated to Integrative Medicine. The Morrison Center "champions a nutritional approach to healthcare as well as preventing and reversing degenerative diseases. Specific treatments are aimed at enhancing the body's ability to heal and detoxify itself. These safe, non-toxic and non-invasive therapies are proving to be more powerful than conventional treatments, which utilize often dangerous drugs and surgeries."
This is the very approach I have taken in treating my Lyme disease and co-infections but I have been left to do all the research and figure out treatment on my own as my previous Lyme Specialist has very little experience with this form of healthcare. Antibiotics and other pharmaceuticals are still used by my new Specialist, however he uses all forms of nutrition and non-toxic therapy first to kill the bacteria before prescribing drugs. His approach is "whole body". He has already taken extensive blood work (full results in 1 week) and started me on a treatment plan that far exceeds anything I have been able to do to date. I found out more about my current health and the infections I am fighting in my 3 hour appointment with him than I have since I first fell sick at 15 yrs of age.
My full treatment plan will be determined once he receives all the results from my blood work in about a week. However, there were immediate determinations he was able to make based off my examination, past history, previous blood work and current list of symptoms. So here is a synopsis of his current evaluation of my health and my treatment plan to date (I will be detailed for my Lyme friends who may benefit from some of his recommendations!):
•He immediately put me on B-12 shots 3 times a week when he saw my B12 level which my neurologist said was "normal". Not so for a woman in her early 30s with Lyme Disease! So Dan who has a MAJOR needle phobia has become my nurse and must administer my shots...again he proves what an amazing husband he is!
•He started me on an Iodine supplement (Iodoral) after I tested extremely low. Within 48 hrs of being on the supplement I saw a MAJOR difference in my energy levels. This is a BIG key to all my overwhelming weakness and iodine will also boost my immune system to fight!!! Over 90% of people test low for Iodine and women should be aware of this as low Iodine can lead to breast cancer, cyst issues and is imperative for anyone with a thyroid problem. ALL Lyme Patients should have this simple test done and I also recommend it to ALL the women in my life and men experiencing low energy.
•He has also put me on high levels of Magnesium which has already begun to ease up my extreme muscle spasms all over my body. Critical for Lyme patients and easy! I have also begun Potassium 2x's a day in a dissolvable form...minerals are critical!
•HOME OXYGEN!!! Wow....it has been known for years that oxygen kills bacteria and oxygen therapy has been used for Lyme patients usually through expensive Hyperbaric Chamber Treatment which most patients cannot afford (ME!). Dr. Borrascano began using home oxygen units with his patients usually for sleeping so you get long doses of oxygen a day. For me I am able to use it far more than just at night as I am bed and couch ridden 80% of the time. It assists in many areas...improves circulation, increases energy, oxygenates the cells, decreases my pain, helps me breath when my breathing becomes very heavy and labored, but most of all...KILLS BACTERIA which of course causes more HERX reactions which means often I feel worse, but as my specialist reminded me you MUST feel worse before you will get better!!! I have not taken pain killers at night to sleep since I have been on the oxygen and it has assisted me many times when I have been bad during the day as well....thank God for oxygen...something I believe I will be using long term!
•Candida (yeast overgrowth) in the body is a BIG problem for Lyme patients especially those on antibiotics and can cause any number of complications to the healing process. Since I have NOT been on any antibiotics since the fall my hope was that mine was under control but NOT so...I have begun Nystatin twice a day and have seen some improvement!
•Teasel Root (SpiroNil by PRL labs is the brand he recommends) which is a herb has a direct effect on spirochete type infections like Lyme. It has become a big breakthrough in Lyme and co-infection treatment and often has been able to replace all antibiotic therapy as it causes strong Herx reactions. I have just begun dosing myself with the Teasel Root today. You have to start slow...10 drops a day and slowly work my way up to 60 drops a day. It can cause such strong Herx reactions you have to go slowly to see what the body can tolerate. My Specialist hopes to see great success with this for me as he has with so many of his patients!!
•Salt / C Treatment...High salt, high vitamin C has been used as an effective Lyme treatment over the last few years. The bacteria hates the environment created in the body with high doses of vitamin C and salt present in the system. With the nutritional plan I have been using I get VERY high doses of vitamin C in my body daily however my body tested low in salt...yes, the body needs certain levels of salt to operate properly and Lyme patients tend to need more salt in the system
than most. So I have begun two salt pills a day and am using more salt in my diet.
•Florastor is a probiotic that has been proven the best on the market. He has added it to another probiotic I take twice daily...the more the better but unfortunately they can be a pricy supplement!
•Physical Therapy (PT) and or exercise is KEY in the treatment for Lyme. It is a tough one for Lyme patients as our bodies have been under such attack most have lost an incredible amount of muscle tone and experience such severe weakness that exercise is overwhelming and impossible at times! I have to start with PT as I have been mostly bedridden for so long. Stretching, heat and massage is all I am allowed for now but my body is already responding positively after only a few sessions. Encouraging but frustrating for a former dancer and exercise freak!
•Diet & Nutrition is the best way we can enable the immune system to do its job in fighting disease. My Specialist is VERY pleased with all I have been doing and feels that the discipline I have used in my dietary choices gives me a strong chance of taking me all the way without the use of high dose antibiotics. He is checking all of my Vitamin and Nutrient levels as it is possible I may NOT be absorbing all I am taking in due to the inflammation from the disease. We will know if Nutritional IV Therapy is needed after my blood work comes back. It continues to be a lot of work daily for both Dan and I to keep up with the diet and nutrition but we are committed long term because that is what it is going to take!!!
•He feels Antibiotics may be something we may have to consider down the road for one of my co-infections but for now I am NOT on any antibiotic treatment.
That is the basic run down for now. Next week I will have a much better view of where my body is at after my blood work is in. My Specialist has also determined that my Lyme and co-infections seem to have emerged more neurological than arthritic in my body however both are a problem for me. I am so thankful for the Lord bringing this specialist into my life. I believe this is the man God has hand picked for me to see me through this journey.
Thanks to a good friend who informed me of a local Lyme Conference that took place mid-March I was able to hear Gerald Simmons, PA speak about this complicated disease and all its co-infections. I learned more from him in 2 hours than anyone (other than all the books I have read) has been able to teach me since my diagnosis. Gerald Simmons was the Physicians Assistant for what is now one of the most well renowned Lyme Specialist to date, Dr. Joseph Burrascano. He worked along side him for 12 years until he closed his practice. Gerald Simmons is an award winning Physicians Assistant who now serves on multiple boards for tick borne diseases and is up to date on the latest breakthroughs in treating these complicated diseases.
He now works out of The Morrison Center in NYC, a practice dedicated to Integrative Medicine. The Morrison Center "champions a nutritional approach to healthcare as well as preventing and reversing degenerative diseases. Specific treatments are aimed at enhancing the body's ability to heal and detoxify itself. These safe, non-toxic and non-invasive therapies are proving to be more powerful than conventional treatments, which utilize often dangerous drugs and surgeries."
This is the very approach I have taken in treating my Lyme disease and co-infections but I have been left to do all the research and figure out treatment on my own as my previous Lyme Specialist has very little experience with this form of healthcare. Antibiotics and other pharmaceuticals are still used by my new Specialist, however he uses all forms of nutrition and non-toxic therapy first to kill the bacteria before prescribing drugs. His approach is "whole body". He has already taken extensive blood work (full results in 1 week) and started me on a treatment plan that far exceeds anything I have been able to do to date. I found out more about my current health and the infections I am fighting in my 3 hour appointment with him than I have since I first fell sick at 15 yrs of age.
My full treatment plan will be determined once he receives all the results from my blood work in about a week. However, there were immediate determinations he was able to make based off my examination, past history, previous blood work and current list of symptoms. So here is a synopsis of his current evaluation of my health and my treatment plan to date (I will be detailed for my Lyme friends who may benefit from some of his recommendations!):
•He immediately put me on B-12 shots 3 times a week when he saw my B12 level which my neurologist said was "normal". Not so for a woman in her early 30s with Lyme Disease! So Dan who has a MAJOR needle phobia has become my nurse and must administer my shots...again he proves what an amazing husband he is!
•He started me on an Iodine supplement (Iodoral) after I tested extremely low. Within 48 hrs of being on the supplement I saw a MAJOR difference in my energy levels. This is a BIG key to all my overwhelming weakness and iodine will also boost my immune system to fight!!! Over 90% of people test low for Iodine and women should be aware of this as low Iodine can lead to breast cancer, cyst issues and is imperative for anyone with a thyroid problem. ALL Lyme Patients should have this simple test done and I also recommend it to ALL the women in my life and men experiencing low energy.
•He has also put me on high levels of Magnesium which has already begun to ease up my extreme muscle spasms all over my body. Critical for Lyme patients and easy! I have also begun Potassium 2x's a day in a dissolvable form...minerals are critical!
•HOME OXYGEN!!! Wow....it has been known for years that oxygen kills bacteria and oxygen therapy has been used for Lyme patients usually through expensive Hyperbaric Chamber Treatment which most patients cannot afford (ME!). Dr. Borrascano began using home oxygen units with his patients usually for sleeping so you get long doses of oxygen a day. For me I am able to use it far more than just at night as I am bed and couch ridden 80% of the time. It assists in many areas...improves circulation, increases energy, oxygenates the cells, decreases my pain, helps me breath when my breathing becomes very heavy and labored, but most of all...KILLS BACTERIA which of course causes more HERX reactions which means often I feel worse, but as my specialist reminded me you MUST feel worse before you will get better!!! I have not taken pain killers at night to sleep since I have been on the oxygen and it has assisted me many times when I have been bad during the day as well....thank God for oxygen...something I believe I will be using long term!
•Candida (yeast overgrowth) in the body is a BIG problem for Lyme patients especially those on antibiotics and can cause any number of complications to the healing process. Since I have NOT been on any antibiotics since the fall my hope was that mine was under control but NOT so...I have begun Nystatin twice a day and have seen some improvement!
•Teasel Root (SpiroNil by PRL labs is the brand he recommends) which is a herb has a direct effect on spirochete type infections like Lyme. It has become a big breakthrough in Lyme and co-infection treatment and often has been able to replace all antibiotic therapy as it causes strong Herx reactions. I have just begun dosing myself with the Teasel Root today. You have to start slow...10 drops a day and slowly work my way up to 60 drops a day. It can cause such strong Herx reactions you have to go slowly to see what the body can tolerate. My Specialist hopes to see great success with this for me as he has with so many of his patients!!
•Salt / C Treatment...High salt, high vitamin C has been used as an effective Lyme treatment over the last few years. The bacteria hates the environment created in the body with high doses of vitamin C and salt present in the system. With the nutritional plan I have been using I get VERY high doses of vitamin C in my body daily however my body tested low in salt...yes, the body needs certain levels of salt to operate properly and Lyme patients tend to need more salt in the system
than most. So I have begun two salt pills a day and am using more salt in my diet.
•Florastor is a probiotic that has been proven the best on the market. He has added it to another probiotic I take twice daily...the more the better but unfortunately they can be a pricy supplement!
•Physical Therapy (PT) and or exercise is KEY in the treatment for Lyme. It is a tough one for Lyme patients as our bodies have been under such attack most have lost an incredible amount of muscle tone and experience such severe weakness that exercise is overwhelming and impossible at times! I have to start with PT as I have been mostly bedridden for so long. Stretching, heat and massage is all I am allowed for now but my body is already responding positively after only a few sessions. Encouraging but frustrating for a former dancer and exercise freak!
•Diet & Nutrition is the best way we can enable the immune system to do its job in fighting disease. My Specialist is VERY pleased with all I have been doing and feels that the discipline I have used in my dietary choices gives me a strong chance of taking me all the way without the use of high dose antibiotics. He is checking all of my Vitamin and Nutrient levels as it is possible I may NOT be absorbing all I am taking in due to the inflammation from the disease. We will know if Nutritional IV Therapy is needed after my blood work comes back. It continues to be a lot of work daily for both Dan and I to keep up with the diet and nutrition but we are committed long term because that is what it is going to take!!!
•He feels Antibiotics may be something we may have to consider down the road for one of my co-infections but for now I am NOT on any antibiotic treatment.
That is the basic run down for now. Next week I will have a much better view of where my body is at after my blood work is in. My Specialist has also determined that my Lyme and co-infections seem to have emerged more neurological than arthritic in my body however both are a problem for me. I am so thankful for the Lord bringing this specialist into my life. I believe this is the man God has hand picked for me to see me through this journey.
6th Blog...My Current Reality...dated 4/1/09
It is a LONG ROAD to recovery or remission...there is no denying that fact without a miracle from the Lord which we, and many of you, are praying for daily! Dan works round the clock to care for me and our three children. I am couch or bedridden most of the time with small windows of GOOD hours or days if I am lucky in between Herx reactions.
What I call a GOOD day is not an average persons "good". I consider being able to bathe myself, walk short distances, help a little around the house and maybe get out to church or a special occasion with assistance or a wheelchair a GOOD day. This is my NEW NORMAL. I say this to give you a small glimpse of what life is like for us now.
Some may think I just "don’t feel good" and when people do see me it is usually in a GOOD moment so they may not think I am very sick. I want to be clear that I am currently DISABLED. It is a hard word to use and has taken me a long time to come to grips with but it is the truth of my current reality. My life changes on a dime...one moment I may be talking to someone or just resting and the next I could be convulsing on the floor gasping for breath. It is the truth, we have comes to grips with it and I am happy to say it has not shaken us!!
We will fight and not stop fighting. Fighting is not just something you do so you can "recover", fighting is something you do to LIVE each and every day to its fullest, whether it is in a bed or running a full day of ministry to schools across this country. My body may not cooperate anymore but this 33 year old woman is ALIVE and working to find joy in each new day with my husband and three gorgeous boys who love their Mommy even when she can't play, get them juice, help with homework, change a diaper or wipe a tear...they often wipe mine!! God will see us through this journey no matter where it takes us or how we get there...we rest....because ultimately, He is in control!!!
What I call a GOOD day is not an average persons "good". I consider being able to bathe myself, walk short distances, help a little around the house and maybe get out to church or a special occasion with assistance or a wheelchair a GOOD day. This is my NEW NORMAL. I say this to give you a small glimpse of what life is like for us now.
Some may think I just "don’t feel good" and when people do see me it is usually in a GOOD moment so they may not think I am very sick. I want to be clear that I am currently DISABLED. It is a hard word to use and has taken me a long time to come to grips with but it is the truth of my current reality. My life changes on a dime...one moment I may be talking to someone or just resting and the next I could be convulsing on the floor gasping for breath. It is the truth, we have comes to grips with it and I am happy to say it has not shaken us!!
We will fight and not stop fighting. Fighting is not just something you do so you can "recover", fighting is something you do to LIVE each and every day to its fullest, whether it is in a bed or running a full day of ministry to schools across this country. My body may not cooperate anymore but this 33 year old woman is ALIVE and working to find joy in each new day with my husband and three gorgeous boys who love their Mommy even when she can't play, get them juice, help with homework, change a diaper or wipe a tear...they often wipe mine!! God will see us through this journey no matter where it takes us or how we get there...we rest....because ultimately, He is in control!!!
5th Blog...Feb 1, 2009....One Year Since I fell Seriously ill....
February 1, 2009...Its hard to believe that it was a year ago today that I fell seriously ill.
I remember my legs giving out that day and I became so weak I could not get out of bed without assistance. This feeling was all to familiar and naturally I believed I would recover with rest and nutrition as I always had within a few days or weeks at most. It wasn't till May that I realized how seriously ill I really was and that additional testing was needed. In June I was diagnosed with Late Stage Lyme Disease and then had my diagnosis questioned by the same doctor who finally diagnosed me. After 17 years of illness I finally received a firm diagnosis in late July from a Lyme Disease Specialist and began antibiotic treatment immediately.
My last blog was one month into treatment after a series of ER visits. It was the last time I felt I could really talk about this disease that had taken over my life and changed everything for me and my family. I figured today was time to break my silence and look back over what I have been through thus far and to look forward believing for better days to come!!
The month of September and early October where the worst I had ever experienced. The antibiotics began doing there job and bacteria die off led to serious Herx reactions and unexplainable weakness including the addition of many new symptoms. Extreme muscle spasms, labored breathing, throat swelling and blockage, numbness and tingling that moved all around my body, pain in all my joints and muscles, pain and blurred vision behind both eyes, nausea and vomitting, ear pain, insomnia, panic attacks, inability at times to sit up or feed myself, dangerous weight loss...etc... This became my daily and nightly existence...
I did not want to blog during this time because finding something positive to say was hard and I feel it is only right to be honest that at this point in my journey with chronic illness I began to lose hope and wonder if I would survive this. I have always been a positive and very optimistic person and to come to this point was...well...heartbreaking.
By mid October a trip to both my Lyme Specialist and Homeopathic Doctor confirmed that my body was not dealing well with the antibiotics and I had to stop treatment...my homeopathic doctor later told me that after treating me for 10 years he had never seen me this ill and worried that I was slipping away. I found out that my Mom who had been at my bedside since this illness began at age of 15 felt the same way...So I prayed!! I was scared to stop...scared to continue...scared my kids would not have me if I made the wrong decision.
During a very weak morning a few days later I woke with a strong sense from the Lord to stop antibiotics...and to stop right away!! I felt the Lord remind me of His word to me two years earlier after I had suffered a bad episode that had included pneumonia and pleurisy. He had clearly spoken that I would find healing through nutrition which I had been studying and partially following for four years at that time. It had sent me into remission before but when I would begin feeling better I would slide back into my old patterns of eating and symptoms would return. This time I knew God was asking me to begin using a nutritional plan that has cured all types of late stage diseases including stage four cancer, MS and many more. It was just a step up nutritionally from what I had been doing before I began antibiotic treatment so I knew I could do it...and it was time to start!
I was scared as symptoms got worse at first but within a week I was out of bed and began walking short distances around the house. I was able to help out with food preparations and engage with my children again. My doctors who supported this nutritional treatment were stunned at my almost immediate improvement but it was way to soon to think we were out of the woods...In late October my community threw us a fundraiser that just blew us away. More than $5,000 was raised to help us with medical expenses. We were unbelievably blessed!!
3 weeks of improvement where very encouraging but the beginning of November
brought my worst reaction yet. I began experiencing severe neurological symptoms. Burning and tingling up and down my spine, serious panic attacks, nausea and vomiting, ect...It is an experience I cannot describe. By day two we had to move me over to my Mom's house were my Mom, Dad and Dan sat vigil with me day and night as I went through the worst week I can ever remember. My kids where split up amongst my sisters and I was on round the clock phone calls with my doctor. I remember laying on the floor in the fetal position and singing worship songs...it was a minute by minute clinging on to my God and trusting Him that I would make it through this. By the weekend I was hospitalized for dehydration and released the same day. The next morning things began to improve...
The rest of the month was up and down but two weeks after that major episode I was walking and participating in some household activities again. Thanksgiving week came with some serious panic attacks again as the Lyme has serious effects on the mind. By the beginning of December things began to really improve. My energy levels where improving while symptoms also decreased and my good days were getting better and more frequent. I was using my wheelchair less when we went out. I actually walked around a grocery store for the first time in months. The week before Christmas allowed me two days of Christmas shopping with Dan and more walking than I have done since this all began.
My Lyme specialist could not believe my recovery. He was astounded by the job my nutrition and lifestyle changes were making without the use of antibiotics. By Christmas I had of course done to much which any Mom of three would do before the holidays...I just often forget my limitations on my good days because I am just so happy to be a functioning person!! On Christmas day I had a bad episode that took me some days of rest to recover from. The nutrition still causes the Herx reactions but it also helps you detox so the reactions are far less than with the antibiotics which also come with their own list of side effects.
Two days after Christmas we received the greatest gift as we were given a condo in Panama City, Fla for the month of January to give me some true rest, sun and time to reconnect with my family... things I so desperately needed after this very difficult year!! During our time away I struggled with the flu and some sinus issues which came out of the exhaustion of December and coming down off of the stress I have been under these last months. It was a wonderful month away (pics on facebook) and it was very difficult to return home today.
So here I am, one year later updating a blog I would never have dreamed of starting a year ago. As I sit here I am numb in the left side of my head, have random pain around my body but...I am here. I am beating this disease and one year from now I believe I will be writing about my remission...and if I'm not...I will still be fighting!! True healing takes time...its just the truth and so I am willing to continue the journey. I am not afraid to admit that I am often afraid and that I often do not understand and question God in this process (He doesn't mind!!). I am learning, I am growing, I am not perfect, but am committed to the process. I don't imagine that my struggles are anything compared to the struggles of so many who suffer severe chronic illness. Their sufferings are not to be imagined and I am thankful for God's mercy on our family.
I hope this new year to take some time to blog about what I have learned through the difficulties of 2008 because there is much to share...I think this is enough for now after 5 months of silence.
I would like to take this opportunity to say thank you again to everyone who has prayed, read this blog, written me encouraging words, stayed by my side during my worst and best moments. One of the greatest realizations this year was how loved me and my family are by so many...really loved by people who don't just say they care but live it by extending there hand to us in so many different ways. Many of these people I have never even met before!! I am overwhelmed to say the least....
February 2, 2009 is a new day. I look forward to it and many more to come...
PS. A Herx Reaction: Extreme Die off of bacteria which releases toxins into the system causing a strong onset of symptoms making you feel pretty miserable for minutes to weeks...you never know!
I remember my legs giving out that day and I became so weak I could not get out of bed without assistance. This feeling was all to familiar and naturally I believed I would recover with rest and nutrition as I always had within a few days or weeks at most. It wasn't till May that I realized how seriously ill I really was and that additional testing was needed. In June I was diagnosed with Late Stage Lyme Disease and then had my diagnosis questioned by the same doctor who finally diagnosed me. After 17 years of illness I finally received a firm diagnosis in late July from a Lyme Disease Specialist and began antibiotic treatment immediately.
My last blog was one month into treatment after a series of ER visits. It was the last time I felt I could really talk about this disease that had taken over my life and changed everything for me and my family. I figured today was time to break my silence and look back over what I have been through thus far and to look forward believing for better days to come!!
The month of September and early October where the worst I had ever experienced. The antibiotics began doing there job and bacteria die off led to serious Herx reactions and unexplainable weakness including the addition of many new symptoms. Extreme muscle spasms, labored breathing, throat swelling and blockage, numbness and tingling that moved all around my body, pain in all my joints and muscles, pain and blurred vision behind both eyes, nausea and vomitting, ear pain, insomnia, panic attacks, inability at times to sit up or feed myself, dangerous weight loss...etc... This became my daily and nightly existence...
I did not want to blog during this time because finding something positive to say was hard and I feel it is only right to be honest that at this point in my journey with chronic illness I began to lose hope and wonder if I would survive this. I have always been a positive and very optimistic person and to come to this point was...well...heartbreaking.
By mid October a trip to both my Lyme Specialist and Homeopathic Doctor confirmed that my body was not dealing well with the antibiotics and I had to stop treatment...my homeopathic doctor later told me that after treating me for 10 years he had never seen me this ill and worried that I was slipping away. I found out that my Mom who had been at my bedside since this illness began at age of 15 felt the same way...So I prayed!! I was scared to stop...scared to continue...scared my kids would not have me if I made the wrong decision.
During a very weak morning a few days later I woke with a strong sense from the Lord to stop antibiotics...and to stop right away!! I felt the Lord remind me of His word to me two years earlier after I had suffered a bad episode that had included pneumonia and pleurisy. He had clearly spoken that I would find healing through nutrition which I had been studying and partially following for four years at that time. It had sent me into remission before but when I would begin feeling better I would slide back into my old patterns of eating and symptoms would return. This time I knew God was asking me to begin using a nutritional plan that has cured all types of late stage diseases including stage four cancer, MS and many more. It was just a step up nutritionally from what I had been doing before I began antibiotic treatment so I knew I could do it...and it was time to start!
I was scared as symptoms got worse at first but within a week I was out of bed and began walking short distances around the house. I was able to help out with food preparations and engage with my children again. My doctors who supported this nutritional treatment were stunned at my almost immediate improvement but it was way to soon to think we were out of the woods...In late October my community threw us a fundraiser that just blew us away. More than $5,000 was raised to help us with medical expenses. We were unbelievably blessed!!
3 weeks of improvement where very encouraging but the beginning of November
brought my worst reaction yet. I began experiencing severe neurological symptoms. Burning and tingling up and down my spine, serious panic attacks, nausea and vomiting, ect...It is an experience I cannot describe. By day two we had to move me over to my Mom's house were my Mom, Dad and Dan sat vigil with me day and night as I went through the worst week I can ever remember. My kids where split up amongst my sisters and I was on round the clock phone calls with my doctor. I remember laying on the floor in the fetal position and singing worship songs...it was a minute by minute clinging on to my God and trusting Him that I would make it through this. By the weekend I was hospitalized for dehydration and released the same day. The next morning things began to improve...
The rest of the month was up and down but two weeks after that major episode I was walking and participating in some household activities again. Thanksgiving week came with some serious panic attacks again as the Lyme has serious effects on the mind. By the beginning of December things began to really improve. My energy levels where improving while symptoms also decreased and my good days were getting better and more frequent. I was using my wheelchair less when we went out. I actually walked around a grocery store for the first time in months. The week before Christmas allowed me two days of Christmas shopping with Dan and more walking than I have done since this all began.
My Lyme specialist could not believe my recovery. He was astounded by the job my nutrition and lifestyle changes were making without the use of antibiotics. By Christmas I had of course done to much which any Mom of three would do before the holidays...I just often forget my limitations on my good days because I am just so happy to be a functioning person!! On Christmas day I had a bad episode that took me some days of rest to recover from. The nutrition still causes the Herx reactions but it also helps you detox so the reactions are far less than with the antibiotics which also come with their own list of side effects.
Two days after Christmas we received the greatest gift as we were given a condo in Panama City, Fla for the month of January to give me some true rest, sun and time to reconnect with my family... things I so desperately needed after this very difficult year!! During our time away I struggled with the flu and some sinus issues which came out of the exhaustion of December and coming down off of the stress I have been under these last months. It was a wonderful month away (pics on facebook) and it was very difficult to return home today.
So here I am, one year later updating a blog I would never have dreamed of starting a year ago. As I sit here I am numb in the left side of my head, have random pain around my body but...I am here. I am beating this disease and one year from now I believe I will be writing about my remission...and if I'm not...I will still be fighting!! True healing takes time...its just the truth and so I am willing to continue the journey. I am not afraid to admit that I am often afraid and that I often do not understand and question God in this process (He doesn't mind!!). I am learning, I am growing, I am not perfect, but am committed to the process. I don't imagine that my struggles are anything compared to the struggles of so many who suffer severe chronic illness. Their sufferings are not to be imagined and I am thankful for God's mercy on our family.
I hope this new year to take some time to blog about what I have learned through the difficulties of 2008 because there is much to share...I think this is enough for now after 5 months of silence.
I would like to take this opportunity to say thank you again to everyone who has prayed, read this blog, written me encouraging words, stayed by my side during my worst and best moments. One of the greatest realizations this year was how loved me and my family are by so many...really loved by people who don't just say they care but live it by extending there hand to us in so many different ways. Many of these people I have never even met before!! I am overwhelmed to say the least....
February 2, 2009 is a new day. I look forward to it and many more to come...
PS. A Herx Reaction: Extreme Die off of bacteria which releases toxins into the system causing a strong onset of symptoms making you feel pretty miserable for minutes to weeks...you never know!
4th Blog...ER, ER, and more ER... dated 9/9/08
Just a day after my last blog life began to seemingly fall apart....2 weeks later we are all doing OK but let me give you a little recap as I know so many of you have sent emails expressing your concern...here we go:
August 27th: Began having tightening in my chest after dinner which quickly turned into sharp chest pain which shot over my heart and down my left arm. After about 4 hours of trying to stay relaxed and calm and see if it would go away on its own, I gave in. Knowing my Lyme Specialist and Homeopathic doctor where both concerned for my heart to be checked due to earlier chest pain, we were off to the ER. It was 10:30pm.
August 28th: After 16 hours in the ER in two different rooms followed by being admitted and switched to two different floors in a matter of 4 hours the doctor said I had "officially passed the Stonybrook University Hospital Stress Test" Ha Ha...trust me, I was not laughing!!!! They ran several tests including blood tests to see if I had had a heart attack and a CT Scan to see if I had a blood clot in my heart or lung. Everything came back clear which meant the pain was being caused by the Lyme Disease but my heart muscle was functioning well. My Dad and Dan shared shifts and took great care of me while friends and family helped at home. 8:30 pm...22 hours later and with maybe 2 hrs sleep, they released me. The pain was still coming and going but at least I was sure I was not having a heart attack and I could go home and sleep!
Later that evening...We returned home at 9:00pm and found out that our 14mth old (Kai) had not been himself that day. He seemed to be in pain in his stomach and a usually content child had spent much of the afternoon and evening screaming. He was sleeping but Dan and I went up to bed concerned. Sure enough at 10:30PM he woke up panting and obviously in pain. I could not believe I was saying this to Dan but Kai had to go to the ER....my husband would not let me go for obvious reasons so my family and friends came to the rescue again!!! Some went to the hospital to help Dan and some came to stay with the sick, hysterical, sleep deprived mother, ME!!
August 29th: Dan and Kai arrived home around 2:30am. Tests had shown an intestinal blockage which was what seemed to be causing the pain. Diet changes, prune juice and time was the solution. However it all seemed strange to me as I have the most regular son who eats an amazing organic diet...we were just relieved that he was home and ok!! By 3:00am we finally fell into bed!!
August 31st: After two days of some continued pain followed by regular bowel movements and finally a happy baby we thought we were through the worst and our ER days were behind us....NOT SO!!! Sunday morning brought terrible pain again along with a fever which went up to 104 degrees at one point. After many phone calls with the doctor on call, Kai was back to the ER at 4:00pm. Enter family and friends to save us once again!!!
September 1st: Reports came from Dan and my parents all through the day and night from the hospital. Nothing was clear. Still an intestinal blockage, fever unrelated, concern for possible twisted intestine, concern for possible appendicitis and possible surgery...test after test, traumatized baby, drugs to sedate him for CT scan which had the opposite effect, hysterical baby...No Answers!!! Get a call from Dan at 4:00am that they will admit him for observation and one hour later hear noise in the hallway as Dan returns with my exhausted baby as finally a kind doctor says..."take your son home and observe him there and see the pediatrician in the morning!!!"
Five hours later...we all drag ourselves out of bed and back to the pediatrician with a still drugged baby who could not even stand up. They say he seems fine but keep watching him. If fever or pain returns...back to the ER!!!
September 2nd: Wake up to a droopy eyed, crying baby with low temp who still cant walk straight. Try to will myself downstairs to feed him (doesn't happen most days) and help Dan as we are all exhausted. Suddenly I felt everything begin to shut down (familiar feeling) but this time it was different. I slumped into a pile on the floor having lost use of everything. Dan carried me up to my bed. Within seconds I began the worst Herx Reaction yet as my body went into massive muscle spasms or seizures and I was unable to control my body or communicate. My Mom arrived minutes into it and both Dan and Mom remained calm but wondered if they were losing me. A phone call to my specialist confirmed I was having a massive Herx Reaction and to stop antibiotics for a few days to let my body slow down the bacteria die off reaction. I was not able to swallow more than my saliva for hours and soon wondered if I would be back to the ER. Well...we made it through (no ER!!)...but it was a long scary day that left me exhausted and unable to walk for days.
September 3rd-Present: Smaller but similar Herx Reactions continued to happen over the next 5 days as my mind and body slowly recovered and returned to my "new normal" as explained in my previous blog. Kai's fever returned on the 4th but by the 5th he seemed back to his old self.
We are going for further testing tomorrow for Kai as we are concerned for Lyme Disease. The bacteria can pass through the placenta and the breast milk especially when highly symptomatic. Many of his symptoms are similar to my early symptoms including intestinal blockages. I carried and nursed all my boys while fighting this disease unknowingly. Kai is the greatest concern as I was so sick while nursing him. Please pray as we continue to search for answers!
I am still mostly bed ridden but have at times been able to get up and go down the stairs to join the family in the living room. The fight continues as I am stable and back to antibiotics; just waiting to see what tomorrow brings!! These Herx reactions are scary and can be life threatening but it is necessary in order to kill the bacteria and regain health...please continue to pray!!! All our thanks again to family and friends who carried us through another difficult season of this journey...words cannot express!!
At one point I turned to my sister and said, "I just figured out what's worse than being chronically ill...being chronically ill while your child is in the hospital so you can't be there to care for him" Its been a tough two weeks but we continue to trust our loving God!!!
PS. A Herx Reaction: Extreme Die off of bacteria which releases toxins into the system causing a strong onset of symptoms making you feel pretty miserable for minutes to weeks...you never know!
August 27th: Began having tightening in my chest after dinner which quickly turned into sharp chest pain which shot over my heart and down my left arm. After about 4 hours of trying to stay relaxed and calm and see if it would go away on its own, I gave in. Knowing my Lyme Specialist and Homeopathic doctor where both concerned for my heart to be checked due to earlier chest pain, we were off to the ER. It was 10:30pm.
August 28th: After 16 hours in the ER in two different rooms followed by being admitted and switched to two different floors in a matter of 4 hours the doctor said I had "officially passed the Stonybrook University Hospital Stress Test" Ha Ha...trust me, I was not laughing!!!! They ran several tests including blood tests to see if I had had a heart attack and a CT Scan to see if I had a blood clot in my heart or lung. Everything came back clear which meant the pain was being caused by the Lyme Disease but my heart muscle was functioning well. My Dad and Dan shared shifts and took great care of me while friends and family helped at home. 8:30 pm...22 hours later and with maybe 2 hrs sleep, they released me. The pain was still coming and going but at least I was sure I was not having a heart attack and I could go home and sleep!
Later that evening...We returned home at 9:00pm and found out that our 14mth old (Kai) had not been himself that day. He seemed to be in pain in his stomach and a usually content child had spent much of the afternoon and evening screaming. He was sleeping but Dan and I went up to bed concerned. Sure enough at 10:30PM he woke up panting and obviously in pain. I could not believe I was saying this to Dan but Kai had to go to the ER....my husband would not let me go for obvious reasons so my family and friends came to the rescue again!!! Some went to the hospital to help Dan and some came to stay with the sick, hysterical, sleep deprived mother, ME!!
August 29th: Dan and Kai arrived home around 2:30am. Tests had shown an intestinal blockage which was what seemed to be causing the pain. Diet changes, prune juice and time was the solution. However it all seemed strange to me as I have the most regular son who eats an amazing organic diet...we were just relieved that he was home and ok!! By 3:00am we finally fell into bed!!
August 31st: After two days of some continued pain followed by regular bowel movements and finally a happy baby we thought we were through the worst and our ER days were behind us....NOT SO!!! Sunday morning brought terrible pain again along with a fever which went up to 104 degrees at one point. After many phone calls with the doctor on call, Kai was back to the ER at 4:00pm. Enter family and friends to save us once again!!!
September 1st: Reports came from Dan and my parents all through the day and night from the hospital. Nothing was clear. Still an intestinal blockage, fever unrelated, concern for possible twisted intestine, concern for possible appendicitis and possible surgery...test after test, traumatized baby, drugs to sedate him for CT scan which had the opposite effect, hysterical baby...No Answers!!! Get a call from Dan at 4:00am that they will admit him for observation and one hour later hear noise in the hallway as Dan returns with my exhausted baby as finally a kind doctor says..."take your son home and observe him there and see the pediatrician in the morning!!!"
Five hours later...we all drag ourselves out of bed and back to the pediatrician with a still drugged baby who could not even stand up. They say he seems fine but keep watching him. If fever or pain returns...back to the ER!!!
September 2nd: Wake up to a droopy eyed, crying baby with low temp who still cant walk straight. Try to will myself downstairs to feed him (doesn't happen most days) and help Dan as we are all exhausted. Suddenly I felt everything begin to shut down (familiar feeling) but this time it was different. I slumped into a pile on the floor having lost use of everything. Dan carried me up to my bed. Within seconds I began the worst Herx Reaction yet as my body went into massive muscle spasms or seizures and I was unable to control my body or communicate. My Mom arrived minutes into it and both Dan and Mom remained calm but wondered if they were losing me. A phone call to my specialist confirmed I was having a massive Herx Reaction and to stop antibiotics for a few days to let my body slow down the bacteria die off reaction. I was not able to swallow more than my saliva for hours and soon wondered if I would be back to the ER. Well...we made it through (no ER!!)...but it was a long scary day that left me exhausted and unable to walk for days.
September 3rd-Present: Smaller but similar Herx Reactions continued to happen over the next 5 days as my mind and body slowly recovered and returned to my "new normal" as explained in my previous blog. Kai's fever returned on the 4th but by the 5th he seemed back to his old self.
We are going for further testing tomorrow for Kai as we are concerned for Lyme Disease. The bacteria can pass through the placenta and the breast milk especially when highly symptomatic. Many of his symptoms are similar to my early symptoms including intestinal blockages. I carried and nursed all my boys while fighting this disease unknowingly. Kai is the greatest concern as I was so sick while nursing him. Please pray as we continue to search for answers!
I am still mostly bed ridden but have at times been able to get up and go down the stairs to join the family in the living room. The fight continues as I am stable and back to antibiotics; just waiting to see what tomorrow brings!! These Herx reactions are scary and can be life threatening but it is necessary in order to kill the bacteria and regain health...please continue to pray!!! All our thanks again to family and friends who carried us through another difficult season of this journey...words cannot express!!
At one point I turned to my sister and said, "I just figured out what's worse than being chronically ill...being chronically ill while your child is in the hospital so you can't be there to care for him" Its been a tough two weeks but we continue to trust our loving God!!!
PS. A Herx Reaction: Extreme Die off of bacteria which releases toxins into the system causing a strong onset of symptoms making you feel pretty miserable for minutes to weeks...you never know!
3rd Blog....Lyme Disease Treatment Continues...dated 8/26/08
Today Dan and I took a second trip out to New Jersey to see the Lyme Specialist. Many have asked questions over the last month so let me start by answering a few:
My most asked question...YES, I have started treatment. It has been exactly one month since I started the antibiotic treatment. To answer my second most asked question....YES, I can feel it is doing something as I am having some Herx reactions which is good but no real improvement is expected for quite some time as it takes many months or years to see major changes. Instead I get to look forward to a whole new list of symptoms that will come and go as the antibiotics slowly kill off the bacteria that has spread all throughout my body.
One of the other popular questions and a good one is, "Does the Lyme diagnosis mean you don't have Epstein Barr like the doctors thought?" Actually...NO. I do have the Epstein Barr virus in my body as it still comes up positive on my blood work and it is on active levels in the blood. It is very common for Lyme patients to have several other viruses and bacterial problems so it is one of the thing effecting me but it is the Lyme causing all the major problems I am dealing with. For this along with the symptoms from the Lyme Disease I have begun seeing my Homeopathic doctor regularly along with the Lyme specialist.
Here are some of the things the Lyme Specialist told me today:
* I have tested positive for additional tick born bacteria in my body along with the Lyme bacteria. This means he will be targeting each bacteria with very specific antibiotics.
* He has started me on a second antibiotic. So now I am on two different oral antibiotics a day. He is hitting the bacteria harder this month and hoping for more Herx reactions. (see my last blog for an explanation of the Herx reaction)
* I have been having chest pain and pain down my left arm over the last three days. My heart races regularly and I am short of breath at least 50% of the time. These are all symptoms of the disease as the bacteria can attack every organ of the body and the heart is often one of them. I also have a heart murmur. All that to say that he is sending me to a cardiologist to have an echo cardiogram and maybe a stress test to check for damage or further problems. I will let you know what happens after I have those appointments. Needless to say...even if it is a part of the disease it is a very scary symptom!
* I will see him again in a month.
I want to give you an overview of how I am doing as I know so many have asked and really do want to know how I am feeling day to day. This is my new normal:
Physically:
Night: Insomnia, pain and difficulty breathing (usually can't sleep till after 1:00am and can be up till 5:00am on my worst nights)
Morning: Waking is very difficult as it comes with extreme weakness, pain and pressure on my chest (can take up to an hour just to rise out of bed)
Days: Are up and down. I gage how I am doing not by the day but by the hour as my symptoms change constantly. If you ask if I am having a good day I will usually say "I am good/bad right now" the rest of the day, who knows!!! Most days I experience some or all of the following:
* pain behind my eyes
* facial and upper body muscle twitching (like palsy)
* difficulty breathing
* extreme weakness
* extreme fatigue
* difficulty walking or unable to walk (in a wheelchair when we go out at least 90% of the time)
* pain in my teeth & jaw
* pain in my joints especially knees and hips
* pain in my bones and or muscles throughout my body
* pain in my chest and left arm / heart racing
* mind weakness which effects talking, writing, memory and anything that requires thought (so now you have to excuse any of my mistakes in this blog!!)
* most days I still cannot be left alone with the kids as I am unable to care for them fully
On a positive note my good days are better than they where. Even though I do not remotely appear as my old self on these days, I feel I have been given a little reprieve from symptoms with small amounts of energy to accomplish some household tasks, run an errand with the family or play a little with the kids. I had some very special celebrations with family and friends over my birthday this month. God gave me enough energy to enjoy them and for that I am very grateful!!
Mentally:
This is obviously a lot to take in and deal with all though it has been going on for 7 months and of course the 17 years before that. With a diagnosis comes some relief mentally and on the other hand makes you face the reality of what you are dealing with. I have done a lot of reading and research over the last month and have been overwhelmed with what I am learning about the disease. This disease is very serious at the stage I am at and it is equally complicated!! It was a hard month for me to blog because I did not know how to take it all in and process it myself far less try and put it into words to explain it to others. It is still hard. In all honesty I have good and bad days mentally and that is ok. I know my God is steady and unchanging.
Spiritually:
Dan and I feel all the prayers and know God is covering us with so much grace during this time!! We want to thank each and every one of you who are praying and ask you to keep on praying as this is a long hard road. I am leaning more into the Lord daily and trusting Him in each circumstance. We have many decisions that need to be made as we figure out how to continue life during this healing process. We covet your prayers!
Financially:
We now know that our monthly visits with the Lyme Specialist will cost us $80 plus travel. We have not had the chance to really figure out the full financial weight of this but hope to get a better handle on it over the next month. We have seen some wonderful gifts come in that are helping us move forward and we are so grateful for each and every one! Our primary goal is to increase our monthly support so we can cover these extra medical expenses over the next few years and not accrue any major medical debt. Dan is working on this whenever he can but balancing me, the kids, daily household chores, YWAM, All Access and fundraising all at once is overwhelming. Again, we covet your prayers!
I think that is more than enough info for now. I will do my best to blog more this month and hopefully be able to share my thoughts as well as what I am learning. Thank you again for all your love and support! A special thanks to my parents, sisters and friends here in New York who continue to drop everything at a moments notice to help us...we could not make it through this without you!!! It is appreciated more than words can express !! All our Love!!
My most asked question...YES, I have started treatment. It has been exactly one month since I started the antibiotic treatment. To answer my second most asked question....YES, I can feel it is doing something as I am having some Herx reactions which is good but no real improvement is expected for quite some time as it takes many months or years to see major changes. Instead I get to look forward to a whole new list of symptoms that will come and go as the antibiotics slowly kill off the bacteria that has spread all throughout my body.
One of the other popular questions and a good one is, "Does the Lyme diagnosis mean you don't have Epstein Barr like the doctors thought?" Actually...NO. I do have the Epstein Barr virus in my body as it still comes up positive on my blood work and it is on active levels in the blood. It is very common for Lyme patients to have several other viruses and bacterial problems so it is one of the thing effecting me but it is the Lyme causing all the major problems I am dealing with. For this along with the symptoms from the Lyme Disease I have begun seeing my Homeopathic doctor regularly along with the Lyme specialist.
Here are some of the things the Lyme Specialist told me today:
* I have tested positive for additional tick born bacteria in my body along with the Lyme bacteria. This means he will be targeting each bacteria with very specific antibiotics.
* He has started me on a second antibiotic. So now I am on two different oral antibiotics a day. He is hitting the bacteria harder this month and hoping for more Herx reactions. (see my last blog for an explanation of the Herx reaction)
* I have been having chest pain and pain down my left arm over the last three days. My heart races regularly and I am short of breath at least 50% of the time. These are all symptoms of the disease as the bacteria can attack every organ of the body and the heart is often one of them. I also have a heart murmur. All that to say that he is sending me to a cardiologist to have an echo cardiogram and maybe a stress test to check for damage or further problems. I will let you know what happens after I have those appointments. Needless to say...even if it is a part of the disease it is a very scary symptom!
* I will see him again in a month.
I want to give you an overview of how I am doing as I know so many have asked and really do want to know how I am feeling day to day. This is my new normal:
Physically:
Night: Insomnia, pain and difficulty breathing (usually can't sleep till after 1:00am and can be up till 5:00am on my worst nights)
Morning: Waking is very difficult as it comes with extreme weakness, pain and pressure on my chest (can take up to an hour just to rise out of bed)
Days: Are up and down. I gage how I am doing not by the day but by the hour as my symptoms change constantly. If you ask if I am having a good day I will usually say "I am good/bad right now" the rest of the day, who knows!!! Most days I experience some or all of the following:
* pain behind my eyes
* facial and upper body muscle twitching (like palsy)
* difficulty breathing
* extreme weakness
* extreme fatigue
* difficulty walking or unable to walk (in a wheelchair when we go out at least 90% of the time)
* pain in my teeth & jaw
* pain in my joints especially knees and hips
* pain in my bones and or muscles throughout my body
* pain in my chest and left arm / heart racing
* mind weakness which effects talking, writing, memory and anything that requires thought (so now you have to excuse any of my mistakes in this blog!!)
* most days I still cannot be left alone with the kids as I am unable to care for them fully
On a positive note my good days are better than they where. Even though I do not remotely appear as my old self on these days, I feel I have been given a little reprieve from symptoms with small amounts of energy to accomplish some household tasks, run an errand with the family or play a little with the kids. I had some very special celebrations with family and friends over my birthday this month. God gave me enough energy to enjoy them and for that I am very grateful!!
Mentally:
This is obviously a lot to take in and deal with all though it has been going on for 7 months and of course the 17 years before that. With a diagnosis comes some relief mentally and on the other hand makes you face the reality of what you are dealing with. I have done a lot of reading and research over the last month and have been overwhelmed with what I am learning about the disease. This disease is very serious at the stage I am at and it is equally complicated!! It was a hard month for me to blog because I did not know how to take it all in and process it myself far less try and put it into words to explain it to others. It is still hard. In all honesty I have good and bad days mentally and that is ok. I know my God is steady and unchanging.
Spiritually:
Dan and I feel all the prayers and know God is covering us with so much grace during this time!! We want to thank each and every one of you who are praying and ask you to keep on praying as this is a long hard road. I am leaning more into the Lord daily and trusting Him in each circumstance. We have many decisions that need to be made as we figure out how to continue life during this healing process. We covet your prayers!
Financially:
We now know that our monthly visits with the Lyme Specialist will cost us $80 plus travel. We have not had the chance to really figure out the full financial weight of this but hope to get a better handle on it over the next month. We have seen some wonderful gifts come in that are helping us move forward and we are so grateful for each and every one! Our primary goal is to increase our monthly support so we can cover these extra medical expenses over the next few years and not accrue any major medical debt. Dan is working on this whenever he can but balancing me, the kids, daily household chores, YWAM, All Access and fundraising all at once is overwhelming. Again, we covet your prayers!
I think that is more than enough info for now. I will do my best to blog more this month and hopefully be able to share my thoughts as well as what I am learning. Thank you again for all your love and support! A special thanks to my parents, sisters and friends here in New York who continue to drop everything at a moments notice to help us...we could not make it through this without you!!! It is appreciated more than words can express !! All our Love!!
2nd Blog...Treatment for Late Stage Lyme Disease Begins Tomorrow...dated 7/28/08
Today I had my first appointment with the Lyme Specialist in New Jersey!! It went very well and he is a very knowledgeable doctor who has treated over 22,000 people with Lyme. He looked over my June blood work taken by my Neurologist and said it was a very clear positive not an "inconclusive positive" as my Neurologist explained it. He said I was actually very lucky to get a clear positive off that test as it rarely picks up the Borrelia bacteria. So I finally have a firm diagnosis of Lyme Disease! He is also pretty sure based off my long list of symptoms (I have about 25 of the 30) but especially my breathing problems that I am also suffering from some other tick born bacterias that may have also been transmitted in the same tick bite. He drew more blood and has sent those test away to the California Lab that I mentioned in an earlier email which is the most accurate in the country for Lyme and other tick born bacteria blood testing. That unfortunately has to be paid for out of pocket and cost $415 but it is vital to my treatment as he has to treat me for all of the bacteria that is there or all my symptoms will not go away. The basic run down of what he told me is as follows (very smart doctor but not super talkative so I had to ask a lot of questions...here is what I found out):
* He is positive I have had this for a very long time based off my symptoms and that I have been mis-diagnosed all these years.
* He is starting me on oral antibiotics (I will take my first in the morning) and thinks I will have to be on them for a long time...based on what we could get from him, I think he is thinking a year or more. He said I have so many symptoms and the bacteria has been in me so long that it will take some time to try and kill it all. He said this is a very aggressive approach but knowing what this bacteria can do it is necessary to prevent permanent damage and to give me back my quality of life.
* He would have put me on IV antibiotics for 4-7 months but insurance companies will not go longer than 30 days anymore for Lyme patients because they don't want to pay for it. He said he did not want to put me through the process of getting a pick line if it was only for 30 days. After having a pick line when I was pregnant with Tyler, I would not go through that for only 30 days!
* He is very happy with what I am doing nutritionally and encourages me to keep on going as it will help boost my immune system especially when I am on the antibiotics. He also encouraged me to keep seeing my Homeopathic doctor and encouraged some other natural approaches along with the antibiotic regimen.
* The other major thing that will begin happening is something called the Herx reactions which happens soon after you start a new antibiotic and may recur several times during the duration of the time you are on it. Basically it is a heightening of your symptoms that makes you feel awful for a few days to weeks depending on how long it last. It is a good sign because it means the bacteria is dying but releasing toxins along the way thus making me feel worse temporarily. This will happen on and off throughout the time I am on the antibiotics. My greatest concern with this is a more serious breathing episode...please pray for my breathing to remain stable!
* I will continue to see him every month to six weeks and he will change out antibiotics according to how my body responds symptomatically. We were gone today for about 7hrs so it is a days event each time I go!
* Cost of Treatment: We shared what we do with the Doctor and he was so kindly willing to discount the cost of the visits. He charged $200 today instead of $300 so my follow up visits will probably be around $65 each instead of $95. Gas and tolls for each visit will probably range around $100. My Homeopathic treatment will probably range around $100 month. My blood work so far is $415 and he will do more later but I am unsure what the cost will be. My supplements are about $80 - $100 a month including the probiotics and vitamins. The antibiotics should be fully covered as long as my insurance does not start giving me a problem, praise God for that!! Dan has already begun making phone calls to start raising this additional $365 a month along with the $615 we have to cover by next month. Please pray with as as we trust the Lord to supply for these needs!!
* Prognosis: He is optimistic that through all this treatment I should regain full health again. I am aware of the odds for late stage Lyme sufferers and recovery is based on the person as everyone reacts differently to the antibiotics and other treatments. I may deal with relapses or some recurring symptoms later on (which can also be treated) but right now I am thinking immediate relief of the symptoms that keep me from my life and my family. Trusting God for a complete healing in His time!!
It is exciting to FINALLY have a clear diagnosis after 17 years of illness! I don't know what this journey will look like for the next year or two or for the rest of my life for that matter but I am thankful that we have been pointed in the right direction and the correct treatment has begun!
Thank you all for your continued prayers. We will really need them as we work through the next part of this journey!! We will keep the updates coming!
PS. Please pray for us next week as we leave Saturday to spend a weeks vacation with my parents in Vermont. I am praying I do not have a severe Herx reaction that ruins the trip...it is a much needed break for my parents and Dan and I!!
* He is positive I have had this for a very long time based off my symptoms and that I have been mis-diagnosed all these years.
* He is starting me on oral antibiotics (I will take my first in the morning) and thinks I will have to be on them for a long time...based on what we could get from him, I think he is thinking a year or more. He said I have so many symptoms and the bacteria has been in me so long that it will take some time to try and kill it all. He said this is a very aggressive approach but knowing what this bacteria can do it is necessary to prevent permanent damage and to give me back my quality of life.
* He would have put me on IV antibiotics for 4-7 months but insurance companies will not go longer than 30 days anymore for Lyme patients because they don't want to pay for it. He said he did not want to put me through the process of getting a pick line if it was only for 30 days. After having a pick line when I was pregnant with Tyler, I would not go through that for only 30 days!
* He is very happy with what I am doing nutritionally and encourages me to keep on going as it will help boost my immune system especially when I am on the antibiotics. He also encouraged me to keep seeing my Homeopathic doctor and encouraged some other natural approaches along with the antibiotic regimen.
* The other major thing that will begin happening is something called the Herx reactions which happens soon after you start a new antibiotic and may recur several times during the duration of the time you are on it. Basically it is a heightening of your symptoms that makes you feel awful for a few days to weeks depending on how long it last. It is a good sign because it means the bacteria is dying but releasing toxins along the way thus making me feel worse temporarily. This will happen on and off throughout the time I am on the antibiotics. My greatest concern with this is a more serious breathing episode...please pray for my breathing to remain stable!
* I will continue to see him every month to six weeks and he will change out antibiotics according to how my body responds symptomatically. We were gone today for about 7hrs so it is a days event each time I go!
* Cost of Treatment: We shared what we do with the Doctor and he was so kindly willing to discount the cost of the visits. He charged $200 today instead of $300 so my follow up visits will probably be around $65 each instead of $95. Gas and tolls for each visit will probably range around $100. My Homeopathic treatment will probably range around $100 month. My blood work so far is $415 and he will do more later but I am unsure what the cost will be. My supplements are about $80 - $100 a month including the probiotics and vitamins. The antibiotics should be fully covered as long as my insurance does not start giving me a problem, praise God for that!! Dan has already begun making phone calls to start raising this additional $365 a month along with the $615 we have to cover by next month. Please pray with as as we trust the Lord to supply for these needs!!
* Prognosis: He is optimistic that through all this treatment I should regain full health again. I am aware of the odds for late stage Lyme sufferers and recovery is based on the person as everyone reacts differently to the antibiotics and other treatments. I may deal with relapses or some recurring symptoms later on (which can also be treated) but right now I am thinking immediate relief of the symptoms that keep me from my life and my family. Trusting God for a complete healing in His time!!
It is exciting to FINALLY have a clear diagnosis after 17 years of illness! I don't know what this journey will look like for the next year or two or for the rest of my life for that matter but I am thankful that we have been pointed in the right direction and the correct treatment has begun!
Thank you all for your continued prayers. We will really need them as we work through the next part of this journey!! We will keep the updates coming!
PS. Please pray for us next week as we leave Saturday to spend a weeks vacation with my parents in Vermont. I am praying I do not have a severe Herx reaction that ruins the trip...it is a much needed break for my parents and Dan and I!!
1st Blog...Found a Lyme Specialist and a new (used) car in 48 hours!!...dated 7/23/09
Well it is Wednesday evening and I am thrilled to finally be writing an update that has some good news in it!!! First, Monday was one of our lowest days so far. Truly nothing was coming together. I spent some time alone with the God and vented to my Mom, Dad, Dan, etc... Dan and I where really needing some encouragement and some answers especially in the doctor need / car need area of our lives!! Late that evening I received some encouraging emails from some friends and neighbors...it felt like the winds where beginning to shift!!
The next morning I woke up to my Mom arriving at my door with some encouraging words after she had some early morning time with the God. While we were still talking I got a call back from one of the many Lyme Specialist I had called the day before. They were the first doctors office that was very kind to me over the phone and really let me share my story and encouraged me that they could help. The doctor is in New Jersey and I will have to pay out of pocket for the visits (and the gas money and tolls to get there and back). He is actually at the lower end than most of the doctors I called. It is about $300 for the first visit and $95 each additional. I should be able to get all the actual antibiotic treatment covered by my insurance as he will order it through New York Pharmaceuticals. It will still be a financial challenge but I am praying the doctor may be able to discount his services a little and we will have to pray in the rest! I already have my first appointment on Monday (Praise God!!). He will have to see me every month to 6 weeks in the beginning but that may change over time. He comes Highly recommended from a friend of mine who also has Lyme Disease. It is a great step in the right direction and I will let you know how it goes!!...I am still waiting on my second Lyme test results. Praying I get them before Monday and it is a clear positive result!!
Fortunately I will have a way to get to the Doctor on Monday!! Today Dan and I where able to drive home a new (used) Honda Odyssey with very low mileage and in immaculate condition along with being the blue color my boys have prayed for over the last 3 weeks...God once again proved that He is into the details!!! This van just came online (for sale) a few days ago but it had not caught our attention at first. On Monday when we realized that we were still short financially to consider the new or used cars we had seen I went back on the internet once again to start the search over. This van caught my eye and I realized it was falling into the price range God had given us and was a very good van. Long story short we went in, looked at it, drove it, loved it, shared our situation with the dealer and they gave us full price on our trade in and came down on the price of the van putting us right at the number God had given us!!! We still need to raise more but we have been given a no interest loan and some gifts toward the down payment which puts us in a great position. We will continue our fund raising and trust God for the remainder but we truly believe this is the van God chose for us and we are so grateful!!!
Thank you again for all those who have given, are giving and for so many of you who are so faithfully praying for us daily and sending words of encouragement!!! Dan and I are truly overwhelmed by the friends and family God has put around us. To give you just a glimpse, a couple who has been friends of ours for years are coming from Pennsylvania this weekend just to give Dan and my Mom a day off by cleaning the house, taking care of the kids and cooking meals!!! This is just one of so many things people are doing for us....we are soooooooooooooo blessed!! Thank you, thank you, thank you!!! God is with us!!
PS. My sister, brother in law, niece and nephew arrived today from LA. They have move back to New York permanently!! Talk about encouraging...so happy to have them back in our every day life!!!
The next morning I woke up to my Mom arriving at my door with some encouraging words after she had some early morning time with the God. While we were still talking I got a call back from one of the many Lyme Specialist I had called the day before. They were the first doctors office that was very kind to me over the phone and really let me share my story and encouraged me that they could help. The doctor is in New Jersey and I will have to pay out of pocket for the visits (and the gas money and tolls to get there and back). He is actually at the lower end than most of the doctors I called. It is about $300 for the first visit and $95 each additional. I should be able to get all the actual antibiotic treatment covered by my insurance as he will order it through New York Pharmaceuticals. It will still be a financial challenge but I am praying the doctor may be able to discount his services a little and we will have to pray in the rest! I already have my first appointment on Monday (Praise God!!). He will have to see me every month to 6 weeks in the beginning but that may change over time. He comes Highly recommended from a friend of mine who also has Lyme Disease. It is a great step in the right direction and I will let you know how it goes!!...I am still waiting on my second Lyme test results. Praying I get them before Monday and it is a clear positive result!!
Fortunately I will have a way to get to the Doctor on Monday!! Today Dan and I where able to drive home a new (used) Honda Odyssey with very low mileage and in immaculate condition along with being the blue color my boys have prayed for over the last 3 weeks...God once again proved that He is into the details!!! This van just came online (for sale) a few days ago but it had not caught our attention at first. On Monday when we realized that we were still short financially to consider the new or used cars we had seen I went back on the internet once again to start the search over. This van caught my eye and I realized it was falling into the price range God had given us and was a very good van. Long story short we went in, looked at it, drove it, loved it, shared our situation with the dealer and they gave us full price on our trade in and came down on the price of the van putting us right at the number God had given us!!! We still need to raise more but we have been given a no interest loan and some gifts toward the down payment which puts us in a great position. We will continue our fund raising and trust God for the remainder but we truly believe this is the van God chose for us and we are so grateful!!!
Thank you again for all those who have given, are giving and for so many of you who are so faithfully praying for us daily and sending words of encouragement!!! Dan and I are truly overwhelmed by the friends and family God has put around us. To give you just a glimpse, a couple who has been friends of ours for years are coming from Pennsylvania this weekend just to give Dan and my Mom a day off by cleaning the house, taking care of the kids and cooking meals!!! This is just one of so many things people are doing for us....we are soooooooooooooo blessed!! Thank you, thank you, thank you!!! God is with us!!
PS. My sister, brother in law, niece and nephew arrived today from LA. They have move back to New York permanently!! Talk about encouraging...so happy to have them back in our every day life!!!
10th Email...Car Drama still going & Health Update...dated 7/21/08
Dearest Family & Friends,
Wanted to send a quick update and immediate prayer request for our car
situation.
As far as how I am doing. No major changes. Had a little more energy today
than the last few days. Yesterday we had wonderful friends and family watch
our kids for us and I was able to help Dan car hunt for the day...I had my
ups and downs, I am sure mainly from the stress of it all! This week I will
hopefully receive more conclusive blood results and I would ask that you
keep me in prayer as I try to locate and secure an appointment with a Lyme
specialist.
As far as the car situation. We have been searching everyday online and had
not come up with much over the last week. However, after Wednesday's car
problems and the probability of having to drive some distance to a
specialist we knew our situation was even more urgent and decided to go car
hunting in New Jersey yesterday to see what we could find. To make a long
story short we felt we had finally found the used van we where looking for.
It seemed like a great deal until we ended up with a dealer who tagged on
$1,000 in "hidden fees" and would only give us half of what we needed
and
had been quoted from other dealers for our trade in. Defeated we headed home
but decided to stop in a two more Honda dealers to see what they had (we
always buy Honda for their reliability and resale value...we count on
both!). They had nothing used but after sharing our story and what we do
with one dealer he said..."let me see if I can't get you in a new
van" and
proceeded to match the price of the used van we just looked at for a new one
(its also clearance month which we did not realize but works in our favor).
Today Dan did some further price comparison here on the Long Island and saw
one guy at a local Honda dealer that is a friend of my fathers. He actually
was able to come down even further and give us the full amount for our trade
in. However we are still not at the price we need to be at with what we
currently have.
So...we feel God has given us an amount for our monthly payments on the van
and we do not want to exceed that in the purchase price as we still need to
raise some of that amount. Both on the used car and the new (as we are in
the same price category now) we are about $3,600 short on our down payment
including all fees, DMV, etc...
We were not looking for nor expecting a new car (we have never owned a new
car) and in fact we are still very actively looking for another used car
that has what we want and may come in even lower than the quotes we
currently have. Right now we just want to walk in obedience to the Lord and
whatever He would want to do, yet we understand the need to move quickly as
we cannot borrow other peoples cars forever (thank you Daddy)!! We feel a
decision must be made within the next few days, so the pressure is on!!!!!
We ask that you would pray with us for immediate release of these
additional finances and that God would put His finger on the right car. We
feel He has shown us very specifically which car He wants for us...now we
just need to find it in our price range. Thank you for praying and
partnering with us and thank you again to those who have already given to
our need!! Every car we have ever owned has been a miracle story and we are
just waiting to see how God wants to finish writing this one!!!
Love,
Rebecca
Wanted to send a quick update and immediate prayer request for our car
situation.
As far as how I am doing. No major changes. Had a little more energy today
than the last few days. Yesterday we had wonderful friends and family watch
our kids for us and I was able to help Dan car hunt for the day...I had my
ups and downs, I am sure mainly from the stress of it all! This week I will
hopefully receive more conclusive blood results and I would ask that you
keep me in prayer as I try to locate and secure an appointment with a Lyme
specialist.
As far as the car situation. We have been searching everyday online and had
not come up with much over the last week. However, after Wednesday's car
problems and the probability of having to drive some distance to a
specialist we knew our situation was even more urgent and decided to go car
hunting in New Jersey yesterday to see what we could find. To make a long
story short we felt we had finally found the used van we where looking for.
It seemed like a great deal until we ended up with a dealer who tagged on
$1,000 in "hidden fees" and would only give us half of what we needed
and
had been quoted from other dealers for our trade in. Defeated we headed home
but decided to stop in a two more Honda dealers to see what they had (we
always buy Honda for their reliability and resale value...we count on
both!). They had nothing used but after sharing our story and what we do
with one dealer he said..."let me see if I can't get you in a new
van" and
proceeded to match the price of the used van we just looked at for a new one
(its also clearance month which we did not realize but works in our favor).
Today Dan did some further price comparison here on the Long Island and saw
one guy at a local Honda dealer that is a friend of my fathers. He actually
was able to come down even further and give us the full amount for our trade
in. However we are still not at the price we need to be at with what we
currently have.
So...we feel God has given us an amount for our monthly payments on the van
and we do not want to exceed that in the purchase price as we still need to
raise some of that amount. Both on the used car and the new (as we are in
the same price category now) we are about $3,600 short on our down payment
including all fees, DMV, etc...
We were not looking for nor expecting a new car (we have never owned a new
car) and in fact we are still very actively looking for another used car
that has what we want and may come in even lower than the quotes we
currently have. Right now we just want to walk in obedience to the Lord and
whatever He would want to do, yet we understand the need to move quickly as
we cannot borrow other peoples cars forever (thank you Daddy)!! We feel a
decision must be made within the next few days, so the pressure is on!!!!!
We ask that you would pray with us for immediate release of these
additional finances and that God would put His finger on the right car. We
feel He has shown us very specifically which car He wants for us...now we
just need to find it in our price range. Thank you for praying and
partnering with us and thank you again to those who have already given to
our need!! Every car we have ever owned has been a miracle story and we are
just waiting to see how God wants to finish writing this one!!!
Love,
Rebecca
9th Email...Introduction to my Original Blog...dated 7/18/08
Dearest Family and Friends,
I have decided to start this blog to make it easier to update everyone on my
health and not send out such long emails!!! Please feel free to visit at
http://rebeccaburdshealthupdates.blogspot.com. From now on I will send an
updated email along with a notice that I have posted the update email on my
blog (feel free to leave comments or questions on my blog if you like). This
way I can record all my previous emails for those who may want to read the
complete story. I will also try to record my journey, the ups and downs, in
order to hopefully help someone else down the road as I concur this illness
with God's strength and direction.
This week I am spending my time in bed researching Lyme and the Borrelia
Burgdorferi bacteria. I am already learning so much. I am more convinced
than ever that this is the bacteria that is wreaking havoc in my body. The
more I read the more I see there is an urgency to find the right Lyme doctor
and receive treatment in order to prevent permanent neurological damage.
I have located a Lyme Specialist with 18 years experience that I would like
to consult with but he lives in Missouri. Please pray that if this is the
right doctor I will be able to get a consult. My neurologist has been great
but it is time to move on to a specialist which was a recommendation he made
in the beginning however my insurance would not cover it. Well insurance or
not we need to get the right care as this bacteria is not to be messed with.
We will need to see great financial release along the way but we will trust
the Lord with each step. I will have to continue with my neurologist until I
find the right Lyme Doctor so I am praying that will happen quickly!!
I ask for your continued prayers that God would guide me in my research and
that this will lead to the proper care after 17 years of searching. If there
is one thing I have learned that I could pass on in a practical way...our
health is our own personal responsibility and we need to take it into our
own hands and become proactive in our search for answers. Ultimately it is
our life, our body, our temple!!!
I am so thankful for all the Lord is teaching me and for each new day He has
given me to continue to fight this battle with Him. Thank you again for all
your love and prayers!!
Blessings,
Rebecca
I have decided to start this blog to make it easier to update everyone on my
health and not send out such long emails!!! Please feel free to visit at
http://rebeccaburdshealthupdates.blogspot.com. From now on I will send an
updated email along with a notice that I have posted the update email on my
blog (feel free to leave comments or questions on my blog if you like). This
way I can record all my previous emails for those who may want to read the
complete story. I will also try to record my journey, the ups and downs, in
order to hopefully help someone else down the road as I concur this illness
with God's strength and direction.
This week I am spending my time in bed researching Lyme and the Borrelia
Burgdorferi bacteria. I am already learning so much. I am more convinced
than ever that this is the bacteria that is wreaking havoc in my body. The
more I read the more I see there is an urgency to find the right Lyme doctor
and receive treatment in order to prevent permanent neurological damage.
I have located a Lyme Specialist with 18 years experience that I would like
to consult with but he lives in Missouri. Please pray that if this is the
right doctor I will be able to get a consult. My neurologist has been great
but it is time to move on to a specialist which was a recommendation he made
in the beginning however my insurance would not cover it. Well insurance or
not we need to get the right care as this bacteria is not to be messed with.
We will need to see great financial release along the way but we will trust
the Lord with each step. I will have to continue with my neurologist until I
find the right Lyme Doctor so I am praying that will happen quickly!!
I ask for your continued prayers that God would guide me in my research and
that this will lead to the proper care after 17 years of searching. If there
is one thing I have learned that I could pass on in a practical way...our
health is our own personal responsibility and we need to take it into our
own hands and become proactive in our search for answers. Ultimately it is
our life, our body, our temple!!!
I am so thankful for all the Lord is teaching me and for each new day He has
given me to continue to fight this battle with Him. Thank you again for all
your love and prayers!!
Blessings,
Rebecca
8th Email...Spinal Tap Results & Next Steps...dated 7/16/08
Dearest Family & Friends,
So sorry that it has been awhile since I have been able to send an update
(no internet in Vermont house). We had a wonderful time in Vermont. Really
enjoyed our time with Dan's family. All though I still had my ups and downs
overall God really gave me the strength to participate in most of the family
activities even if it was from a sitting position. Thank you everyone for
all your prayers for both a car for the trip (thank you again Daddy!!) and
for our time away. God was with us!!!
I spent the week anticipating my results. I thought I would get them at any
moment...but nothing! Well, I finally got them yesterday. I know it sounds
strange to Not want a clear report but to be honest when you have been sick
as long as I have you want doctors to find something conclusive.
Unfortunately nothing was found on the spinal tap including the Lyme which
is what the doctor was sure he would find. The doctor has not in any way
ruled out the Lyme as I have already shown positive on some of my blood work
but not enough to show a definitive diagnosis. What they want to see is a
more conclusive positive before they start putting strong antibiotics in me
that have there own range of side effects and dangers to my body. I
appreciate the doctors desire to have my first test confirmed although this
back and forth has been extremely difficult for me and my family. We are
wanting to move forward and see some improvement as soon as possible however
even with the antibiotics the doctor has told us that there is no way of
knowing if all my symptoms will improve.
I am new to the world of Lyme Disease but like anything in my life I
immediately dive in deep and have learned how fuzzy and inconclusive
diagnosing this disease truly is. It is VERY hard to get a clear positive
blood result because the bacteria hides in the body and could show up on one
test and not on another or it could be there but not show up at all. It can
be even more difficult in a patients who have potentially had the disease
for a long period of time like myself. There are so many patients who like
me have debilitating symptoms and go mis-diagnosed for years and do finally
get an accurate positive result, are treated and begin to improve. Right now
a clear diagnosis is really what we are praying for.
I went for more blood work today and had a different Lyme test which is
suppose to be more sensitive to the bacteria. I will get those results in a
week to ten days. There is one other path we can take which is to go through
a Lab in California which is well known around the country for being the
best at giving an accurate diagnosis for Lyme. It is there specialty! I have
had several people recommend that I do their testing. The blood draw will be
hear but the processing will be at their lab in California which means I
will have to pay out of pocket. It will be around $410ish to get this done.
Dan and I would like to move forward with this as soon as possible. Will you
pray with us as right now we do not have the finances to move forward with
these test?
The Doctor is very behind us doing any and every test possible to get a
clear result. So we continue on in this battle for answers and treatment but
in the mean time we continue to work hard on our nutritional plan which has
truly been sustaining me. At times I have more energy and less pain. The
hard thing is knowing what is temporary improvement and what will continue
as I had some better days back in April and May and then it went downhill
again for two months. Right now I am truly taking one day at a time
(sometimes one hour) which is all that can really be done. I have had some
new symptoms in the last week which have been difficult to deal with but we
continue to trust and believe that God will see us through every new
challenge as He has up to this point.
As far as our car situation...with all our hearts want to thank everyone
who has given to us and has prayed for us!!!! God is showing His provision
and we are trusting Him for the remainder of what is needed. We feel like we
have the right van in mind but are having a hard time finding it...oh the
joy of the used car search!! We are happy to be patient but to be honest our
van's transmission is worse everyday and today we had to use it to drive out
east (an hour or so) to a specific lab to get the test I needed. It would
not shift over many times and a few where dangerous as we were stuck in an
intersection. All that to say we should not be driving it anymore and would
like the right van to cross our path ASAP!!! We appreciate your continued
prayers!
I think that is about enough information to digest for one email. If anyone
has any further questions or would like more info on what the doctor has
said please don't hesitate to email me and I will get back to you. You can
also find me on facebook now where I will also be posting these updates.
I cannot say enough about how supported Dan and I have felt through this
difficult time because of the love, help, prayers and concerns of all of
you. Please know that we love you all and so appreciate your friendship!!!
Many Blessings!!
Much Love,
Rebecca
PS. As always the list is growing so if you are receiving this update for
the first time please scroll down if you are interested in reading previous
updates!! Thank you again for your love and concern!!
So sorry that it has been awhile since I have been able to send an update
(no internet in Vermont house). We had a wonderful time in Vermont. Really
enjoyed our time with Dan's family. All though I still had my ups and downs
overall God really gave me the strength to participate in most of the family
activities even if it was from a sitting position. Thank you everyone for
all your prayers for both a car for the trip (thank you again Daddy!!) and
for our time away. God was with us!!!
I spent the week anticipating my results. I thought I would get them at any
moment...but nothing! Well, I finally got them yesterday. I know it sounds
strange to Not want a clear report but to be honest when you have been sick
as long as I have you want doctors to find something conclusive.
Unfortunately nothing was found on the spinal tap including the Lyme which
is what the doctor was sure he would find. The doctor has not in any way
ruled out the Lyme as I have already shown positive on some of my blood work
but not enough to show a definitive diagnosis. What they want to see is a
more conclusive positive before they start putting strong antibiotics in me
that have there own range of side effects and dangers to my body. I
appreciate the doctors desire to have my first test confirmed although this
back and forth has been extremely difficult for me and my family. We are
wanting to move forward and see some improvement as soon as possible however
even with the antibiotics the doctor has told us that there is no way of
knowing if all my symptoms will improve.
I am new to the world of Lyme Disease but like anything in my life I
immediately dive in deep and have learned how fuzzy and inconclusive
diagnosing this disease truly is. It is VERY hard to get a clear positive
blood result because the bacteria hides in the body and could show up on one
test and not on another or it could be there but not show up at all. It can
be even more difficult in a patients who have potentially had the disease
for a long period of time like myself. There are so many patients who like
me have debilitating symptoms and go mis-diagnosed for years and do finally
get an accurate positive result, are treated and begin to improve. Right now
a clear diagnosis is really what we are praying for.
I went for more blood work today and had a different Lyme test which is
suppose to be more sensitive to the bacteria. I will get those results in a
week to ten days. There is one other path we can take which is to go through
a Lab in California which is well known around the country for being the
best at giving an accurate diagnosis for Lyme. It is there specialty! I have
had several people recommend that I do their testing. The blood draw will be
hear but the processing will be at their lab in California which means I
will have to pay out of pocket. It will be around $410ish to get this done.
Dan and I would like to move forward with this as soon as possible. Will you
pray with us as right now we do not have the finances to move forward with
these test?
The Doctor is very behind us doing any and every test possible to get a
clear result. So we continue on in this battle for answers and treatment but
in the mean time we continue to work hard on our nutritional plan which has
truly been sustaining me. At times I have more energy and less pain. The
hard thing is knowing what is temporary improvement and what will continue
as I had some better days back in April and May and then it went downhill
again for two months. Right now I am truly taking one day at a time
(sometimes one hour) which is all that can really be done. I have had some
new symptoms in the last week which have been difficult to deal with but we
continue to trust and believe that God will see us through every new
challenge as He has up to this point.
As far as our car situation...with all our hearts want to thank everyone
who has given to us and has prayed for us!!!! God is showing His provision
and we are trusting Him for the remainder of what is needed. We feel like we
have the right van in mind but are having a hard time finding it...oh the
joy of the used car search!! We are happy to be patient but to be honest our
van's transmission is worse everyday and today we had to use it to drive out
east (an hour or so) to a specific lab to get the test I needed. It would
not shift over many times and a few where dangerous as we were stuck in an
intersection. All that to say we should not be driving it anymore and would
like the right van to cross our path ASAP!!! We appreciate your continued
prayers!
I think that is about enough information to digest for one email. If anyone
has any further questions or would like more info on what the doctor has
said please don't hesitate to email me and I will get back to you. You can
also find me on facebook now where I will also be posting these updates.
I cannot say enough about how supported Dan and I have felt through this
difficult time because of the love, help, prayers and concerns of all of
you. Please know that we love you all and so appreciate your friendship!!!
Many Blessings!!
Much Love,
Rebecca
PS. As always the list is growing so if you are receiving this update for
the first time please scroll down if you are interested in reading previous
updates!! Thank you again for your love and concern!!
7th Email...Car Drama Continues with added Stress...dated 7/3/08
Dearest Family & Friends,
Its Thursday and we are due to leave for Vermont on Saturday morning but as
of now we have no vehicle to take us there. However, we are seeing God begin
to move in the area of finances as we have had some wonderful gifts come in
that are moving us in the right direction. We are so grateful!!
The car search has not been going as well. We have almost had the right car
a number of times but each time there is always something that happens to
steer us away ie. price negotiation, looks as if it has been in some form of
accident, or it is sold before we can get to it. You have to be so careful
when buying a used car to make sure you are getting a good one. Dan knows
what he is looking for and has been literally searching on line or in person
all over the Island for the last three days. I joined him on Monday and
Tuesday but on Tuesday night I had another major breathing attack due to the
added stress and activity of this car search. It was worse than the night I
went to the hospital in May but I did not want to go as they never seem to
help me so I waited it out. My breathing was labored for almost 13 hours but
it finally leveled out about 12 noon yesterday.
I have been in bed ever since but today some how we have to get packed for
this trip in faith that we will have a vehicle to go in. We are open to
renting but it will cost about $1000 which we would rather see go toward the
new car. We are truly trusting God for a miracle today!! The perfect
scenario would be to find the right car today or tomorrow to be able to take
it on the trip!
Well....as I am writing this my Dad came in the room and has offered his
truck for us to take if nothing comes up in the next two days...so no
renting praise God!! This will buy us a little time but we will need a car
as soon as we return. We are really believing God that this search will end
quickly so no extra stress will be on Dan or I during this already overly
stressful time. We know our God and he has always given us wonderful gifts
in the cars he has provided and we can't wait to see what he has up his
sleeve this time!
Thank you for all your prayers and we continue to ask you to pray
especially over the next two days...thank you so very much!!
Love,
Rebecca
Its Thursday and we are due to leave for Vermont on Saturday morning but as
of now we have no vehicle to take us there. However, we are seeing God begin
to move in the area of finances as we have had some wonderful gifts come in
that are moving us in the right direction. We are so grateful!!
The car search has not been going as well. We have almost had the right car
a number of times but each time there is always something that happens to
steer us away ie. price negotiation, looks as if it has been in some form of
accident, or it is sold before we can get to it. You have to be so careful
when buying a used car to make sure you are getting a good one. Dan knows
what he is looking for and has been literally searching on line or in person
all over the Island for the last three days. I joined him on Monday and
Tuesday but on Tuesday night I had another major breathing attack due to the
added stress and activity of this car search. It was worse than the night I
went to the hospital in May but I did not want to go as they never seem to
help me so I waited it out. My breathing was labored for almost 13 hours but
it finally leveled out about 12 noon yesterday.
I have been in bed ever since but today some how we have to get packed for
this trip in faith that we will have a vehicle to go in. We are open to
renting but it will cost about $1000 which we would rather see go toward the
new car. We are truly trusting God for a miracle today!! The perfect
scenario would be to find the right car today or tomorrow to be able to take
it on the trip!
Well....as I am writing this my Dad came in the room and has offered his
truck for us to take if nothing comes up in the next two days...so no
renting praise God!! This will buy us a little time but we will need a car
as soon as we return. We are really believing God that this search will end
quickly so no extra stress will be on Dan or I during this already overly
stressful time. We know our God and he has always given us wonderful gifts
in the cars he has provided and we can't wait to see what he has up his
sleeve this time!
Thank you for all your prayers and we continue to ask you to pray
especially over the next two days...thank you so very much!!
Love,
Rebecca
6th Email...Health Update & Car Drama...dated 7/1/08
Dearest Family & Friends,
Its been a week since the spinal tap and I think the side effects are almost gone. I did get some headaches and had to stay totally flat through Saturday. Sunday and today I have been up and around more with minimal headache and back ache. Unfortunately the other symptoms still remain...limited walking, weak body, shortness of breath, pain in bones and joints. We are prayerful that the test results, which should come next week, will be conclusive. I will let you know as soon as I get them. Thank you for your continued prayers!
Well...we have another major challenge that has come up in the last two days. We have been having car trouble off and on over the last year and especially over the last two months. My cousin is a great mechanic and has always been very good to us. He has been trying to locate the problem and save us as much money as possible. After two attempts to fix it he let us know on Saturday that it is our transmission and even with discounted labor will take $3,000 or more to fix. Our car is 10 years old and not worth spending that kind of money to repair.
We now have to replace the car immediately and unexpectedly. Since we are below our monthly support budget we have not had any additional money each month to put away in order to replace the car eventually. So we need a miracle and a quick one as we are scheduled to go up to Vermont on Saturday for a long awaited family reunion with Dan's family (already a major challenge with my health). It is even more critical to replace the car right away due to my condition and our need to get back and forth to doctors and grocery stores to keep me on my nutritional plan. Just the few days our car has been away at the mechanic have been a nightmare trying to juggle 3 kids and a sick wife with no car.
We have sought council as to what we should do and we realize that we need to invest in a reliable used car as we have with the last two cars we owned.
This gives us assurance that we will not have breakdowns or unexpected car problems we cannot afford as we live on a limited budget. We also travel so much with our ministry that a good reliable car is a must!!
So,...what we need to do is raise an immediate $3,000 to $4,000 to make a down payment in order to make our monthly payments affordable. We would have had to raise this to fix our car anyway so we feel it is a good place to start. We will still need to raise additional money to make the monthly payments but we would have some time to do that over the next month.
Car shopping right now is very stressful and difficult due to our financial place and my condition and inability to really help Dan. We need to see God do a miracle and bring us that perfect car that meets all our needs as a family and for ministry. We have a pretty good idea of what we want. We are just trying to get a dealer in our price range. We ask for your prayers as we have to secure a purchase in the next two days and we need a financial miracle to do so!!
I know you will be praying as you have so faithfully done. We weren't sure we could possibly handle one more challenge but here we are!! God is able!!
Much Love,
Rebecca
Its been a week since the spinal tap and I think the side effects are almost gone. I did get some headaches and had to stay totally flat through Saturday. Sunday and today I have been up and around more with minimal headache and back ache. Unfortunately the other symptoms still remain...limited walking, weak body, shortness of breath, pain in bones and joints. We are prayerful that the test results, which should come next week, will be conclusive. I will let you know as soon as I get them. Thank you for your continued prayers!
Well...we have another major challenge that has come up in the last two days. We have been having car trouble off and on over the last year and especially over the last two months. My cousin is a great mechanic and has always been very good to us. He has been trying to locate the problem and save us as much money as possible. After two attempts to fix it he let us know on Saturday that it is our transmission and even with discounted labor will take $3,000 or more to fix. Our car is 10 years old and not worth spending that kind of money to repair.
We now have to replace the car immediately and unexpectedly. Since we are below our monthly support budget we have not had any additional money each month to put away in order to replace the car eventually. So we need a miracle and a quick one as we are scheduled to go up to Vermont on Saturday for a long awaited family reunion with Dan's family (already a major challenge with my health). It is even more critical to replace the car right away due to my condition and our need to get back and forth to doctors and grocery stores to keep me on my nutritional plan. Just the few days our car has been away at the mechanic have been a nightmare trying to juggle 3 kids and a sick wife with no car.
We have sought council as to what we should do and we realize that we need to invest in a reliable used car as we have with the last two cars we owned.
This gives us assurance that we will not have breakdowns or unexpected car problems we cannot afford as we live on a limited budget. We also travel so much with our ministry that a good reliable car is a must!!
So,...what we need to do is raise an immediate $3,000 to $4,000 to make a down payment in order to make our monthly payments affordable. We would have had to raise this to fix our car anyway so we feel it is a good place to start. We will still need to raise additional money to make the monthly payments but we would have some time to do that over the next month.
Car shopping right now is very stressful and difficult due to our financial place and my condition and inability to really help Dan. We need to see God do a miracle and bring us that perfect car that meets all our needs as a family and for ministry. We have a pretty good idea of what we want. We are just trying to get a dealer in our price range. We ask for your prayers as we have to secure a purchase in the next two days and we need a financial miracle to do so!!
I know you will be praying as you have so faithfully done. We weren't sure we could possibly handle one more challenge but here we are!! God is able!!
Much Love,
Rebecca
5th Email...Spinal Tap Recovery...dated 6/24/08
Dearest Family & Friends,
As promised I wanted to send out an update following my spinal tap. I
wanted to get one out yesterday but was feeling to weak to do much of
anything other than lay flat as ordered by my doctor. (For those of you who
may be receiving this health report for the first time, earlier reports are
below...the list keeps growing!!)
I had the spinal tap around noon yesterday at a local surgical center. I
was very calm and peacefully going into it which I attribute to all of you
who I know where praying...thank you so very much! Dan seemed more nervous
and a little close to tears when he said goodbye to me as I went in to be
prepped. He was incredibly sweet and supportive to me throughout.
My neurologist did a great job. I did ok up until they actually began to
draw the fluid (sorry for those who are squeamish). My breathing immediately
became labored, I broke out into a sweet and became lightheaded and nauseas.
The nurse and doctor worked very hard talking with me to try and keep me
from passing out. At one point he asked me if I wanted him to stop.
Fortunately he finished seconds before I thought I would completely pass
out. Once they laid me back down I began to do better. It was a very
unexpected reaction as I was not nervous at all. It was as if my body just
freaked out and no matter how relaxed I tried to stay it did not want that
test!!
I have been staying at my Mom's since the test. I have had to stay laying
flat and drinking lots of fluids. My back is painful at the sight of the
test but no headaches so far. They say that tomorrow is the day they would
start if they happen. So I appreciate your continued prayer. I am feeling
weak and tired but thankful for this test to be done with and praying for
clear results. It will take about 2-3 weeks before I hear anything.
I am hoping to go home tomorrow afternoon to my own bed for continued rest
as long as I am feeling up to it. My parents are doing a wonderful job
caring for Kai and I. I am so thankful!!
Thank you again for all your prayers and for continuing to pray. Dan and I
truly feel the support coming from all around the world. Will send another
report later in the week to let you know how things are going.
Blessings,
Rebecca Burd
PS. My Mom's 60th birthday party is on Saturday. Ask for your prayers that I
will be well enough to attend!! Thank you!!!
As promised I wanted to send out an update following my spinal tap. I
wanted to get one out yesterday but was feeling to weak to do much of
anything other than lay flat as ordered by my doctor. (For those of you who
may be receiving this health report for the first time, earlier reports are
below...the list keeps growing!!)
I had the spinal tap around noon yesterday at a local surgical center. I
was very calm and peacefully going into it which I attribute to all of you
who I know where praying...thank you so very much! Dan seemed more nervous
and a little close to tears when he said goodbye to me as I went in to be
prepped. He was incredibly sweet and supportive to me throughout.
My neurologist did a great job. I did ok up until they actually began to
draw the fluid (sorry for those who are squeamish). My breathing immediately
became labored, I broke out into a sweet and became lightheaded and nauseas.
The nurse and doctor worked very hard talking with me to try and keep me
from passing out. At one point he asked me if I wanted him to stop.
Fortunately he finished seconds before I thought I would completely pass
out. Once they laid me back down I began to do better. It was a very
unexpected reaction as I was not nervous at all. It was as if my body just
freaked out and no matter how relaxed I tried to stay it did not want that
test!!
I have been staying at my Mom's since the test. I have had to stay laying
flat and drinking lots of fluids. My back is painful at the sight of the
test but no headaches so far. They say that tomorrow is the day they would
start if they happen. So I appreciate your continued prayer. I am feeling
weak and tired but thankful for this test to be done with and praying for
clear results. It will take about 2-3 weeks before I hear anything.
I am hoping to go home tomorrow afternoon to my own bed for continued rest
as long as I am feeling up to it. My parents are doing a wonderful job
caring for Kai and I. I am so thankful!!
Thank you again for all your prayers and for continuing to pray. Dan and I
truly feel the support coming from all around the world. Will send another
report later in the week to let you know how things are going.
Blessings,
Rebecca Burd
PS. My Mom's 60th birthday party is on Saturday. Ask for your prayers that I
will be well enough to attend!! Thank you!!!
4th Email...Nutritional & Supplement plan & Spinal Tap update...dated 6/17/08
Dearest Family & Friends,
I just wanted to send a quick update to everyone. I am hoping to set up a facebook account to help better inform everyone in the facebook world on my progress. If there are others you know would like to receive my email updates please let me know so I can add them to the list. For those of you who may be getting this for the first time earlier updates are below.
I spoke with the neurologist yesterday and after he spoke with the Lyme Specialist they feel they should wait until after we have the results from the spinal tap before we decide on the course of treatment. It will most likely still be the IV antibiotic but we will wait and see what the results turn up. This means that the soonest I will start treatment will be mid-July...not what I was hoping for but I am trusting God that the timing is in His perfect plan.
In the mean time I have begun an aggressive nutritional approach which requires 6-8 carrot/green juices a day, lots of raw fruits & veg, B12 supplement, professional strength probiotics, rest, lots of water, exercise when possible, Vitamin D (sun exposure), and NO STRESS!!!. The goal is to boost the immune system so it can fight the bacteria from the disease. This approach has proven effective in fighting and curing stage 4 cancer patients, chronic illness, auto immune diseases (like Lyme), etc... and it is the approach Dan and I feel God has been leading us in. We have already been moving in this direction and following this plan in a less aggressive way for the last four months. We began studying this plan 6 years ago and have been on and off it ever since. We have seen its effectiveness first hand and now that we know I am fighting a bacteria we realize a more aggressive approach is needed.
This is the most aggressive approach we can take but we still understand that it will take time. Due to the severity and long term state of my illness we understand I may have to follow this aggressive approach for a year or two before my body is fully recovered. Once I am back to full health I will continue daily maintenance following all the same principle but less juice and supplements will be needed.
I expect to make a full recovery but I understand the time, commitment and discipline it will take to get there and stay there. Nothing worthwhile in life comes easily but I am happy to be a part of the process and aggressively fight this illness rather than be at the mercy of it! We thank God for His wisdom and His grace to guide us through and as we do our part we know He always does His!!!
My next step is the spinal tap on Monday (June 23rd) at 11:00am. The side effect we are most concerned about is the possibility of getting spinal headaches which are equivalent or sometimes worse than migraines. If you get them they usually start 24 to 48 hrs after the test and it can last for days or weeks. The doctor says I am more susceptible to getting them because of how thin I am but we are praying against it. I am planning to stay flat on my back for 48hrs after the test and drink lots of fluids which are the only things they say may help to prevent the headaches. I ask for your prayers next week that God would see me through this test with no side effects!!!! I will then have to wait 2-3 weeks for results.
I am currently back in bed. The last two weeks I have had to push myself to be involved in some very special events in my family and friends lives which I would not have missed for anything. I was so thankful for God's grace to be able to participate and I know that was a product of so many of your prayers for me. I do feel that it has taken a toll and I have been unable to walk much at all over the last three days along with continued pain and fatigue. So, back to bed until God says differently and we will trust that things will improve over time.
As so many of you are praying I thought I would attach a list of specific request to these emails as I know God answers specifically as we pray specifically. I will be in touch...thank you again for all your love and prayers!!!
Love,
Rebecca
Prayer Request:
*Continued healing
*No Side effect from the spinal tap / successful test in confirming diagnosis *Wisdom for the doctor's and Dan and I in the course of treatment *Strength for Dan as he daily takes care of me and the family while keeping up with my nutritional needs & balancing His ministry responsibilities *Happiness and contentment for the children during this time *Strength for my Mom who comes many times a week to help care for me and the kids and still struggles with her own chronic illness (asthma) *For YWAM NY and the All Access staff to be full of passion, strength and wisdom *Financial release as the nutritional and supplement regimen is costly / increase in monthly support to cover these cost
I just wanted to send a quick update to everyone. I am hoping to set up a facebook account to help better inform everyone in the facebook world on my progress. If there are others you know would like to receive my email updates please let me know so I can add them to the list. For those of you who may be getting this for the first time earlier updates are below.
I spoke with the neurologist yesterday and after he spoke with the Lyme Specialist they feel they should wait until after we have the results from the spinal tap before we decide on the course of treatment. It will most likely still be the IV antibiotic but we will wait and see what the results turn up. This means that the soonest I will start treatment will be mid-July...not what I was hoping for but I am trusting God that the timing is in His perfect plan.
In the mean time I have begun an aggressive nutritional approach which requires 6-8 carrot/green juices a day, lots of raw fruits & veg, B12 supplement, professional strength probiotics, rest, lots of water, exercise when possible, Vitamin D (sun exposure), and NO STRESS!!!. The goal is to boost the immune system so it can fight the bacteria from the disease. This approach has proven effective in fighting and curing stage 4 cancer patients, chronic illness, auto immune diseases (like Lyme), etc... and it is the approach Dan and I feel God has been leading us in. We have already been moving in this direction and following this plan in a less aggressive way for the last four months. We began studying this plan 6 years ago and have been on and off it ever since. We have seen its effectiveness first hand and now that we know I am fighting a bacteria we realize a more aggressive approach is needed.
This is the most aggressive approach we can take but we still understand that it will take time. Due to the severity and long term state of my illness we understand I may have to follow this aggressive approach for a year or two before my body is fully recovered. Once I am back to full health I will continue daily maintenance following all the same principle but less juice and supplements will be needed.
I expect to make a full recovery but I understand the time, commitment and discipline it will take to get there and stay there. Nothing worthwhile in life comes easily but I am happy to be a part of the process and aggressively fight this illness rather than be at the mercy of it! We thank God for His wisdom and His grace to guide us through and as we do our part we know He always does His!!!
My next step is the spinal tap on Monday (June 23rd) at 11:00am. The side effect we are most concerned about is the possibility of getting spinal headaches which are equivalent or sometimes worse than migraines. If you get them they usually start 24 to 48 hrs after the test and it can last for days or weeks. The doctor says I am more susceptible to getting them because of how thin I am but we are praying against it. I am planning to stay flat on my back for 48hrs after the test and drink lots of fluids which are the only things they say may help to prevent the headaches. I ask for your prayers next week that God would see me through this test with no side effects!!!! I will then have to wait 2-3 weeks for results.
I am currently back in bed. The last two weeks I have had to push myself to be involved in some very special events in my family and friends lives which I would not have missed for anything. I was so thankful for God's grace to be able to participate and I know that was a product of so many of your prayers for me. I do feel that it has taken a toll and I have been unable to walk much at all over the last three days along with continued pain and fatigue. So, back to bed until God says differently and we will trust that things will improve over time.
As so many of you are praying I thought I would attach a list of specific request to these emails as I know God answers specifically as we pray specifically. I will be in touch...thank you again for all your love and prayers!!!
Love,
Rebecca
Prayer Request:
*Continued healing
*No Side effect from the spinal tap / successful test in confirming diagnosis *Wisdom for the doctor's and Dan and I in the course of treatment *Strength for Dan as he daily takes care of me and the family while keeping up with my nutritional needs & balancing His ministry responsibilities *Happiness and contentment for the children during this time *Strength for my Mom who comes many times a week to help care for me and the kids and still struggles with her own chronic illness (asthma) *For YWAM NY and the All Access staff to be full of passion, strength and wisdom *Financial release as the nutritional and supplement regimen is costly / increase in monthly support to cover these cost
3rd Email...Updates on Spinal Tap & IV Treatment...dated 6/10/08
Dearest Family and Friends,
Thank you so much to all of you for your prayers and kind reply's from my
last email. Your words and encouragement mean so much.
I just wanted to send a brief update to let you know that I spoke to the
neurologist an hour ago and based on the fact that my symptoms have been so
bad he wants for me to start the antibiotic IV treatment even before we get
the spinal tap results back. If we wait it will be 5 weeks minimum before I
start treatment as I cannot get the spinal tap for another two weeks and it
will take two weeks to get the results and another week to get me set up for
treatment. He feels based off the severity of my symptoms it would be good
to start ASAP.
So my Spinal Tap is on the 23rd and he would like to start treatment within
the day or two following the test. This gives me only two weeks to wean
Malakai from nursing which he still does three times a day. Please pray for
both of us that the process is smooth as this is especially emotional for me
because I have always let my children wean naturally. Malakai just turned 1
years old last week!!! I can hardly believe it!
The only way any of this will change is if the Lyme specialist my
neurologist is consulting with (who I cannot see personally because she does
not take my insurance) does not agree with putting me on this treatment
ASAP. The neurologist feels the specialist will agree based on my symptoms
and the positive blood test. He will talk with her the end of the week and I
will know more then.
Again, I will let you know more details as they come. Please continue to
keep me in your prayers as daily life is difficult around our house and Dan
is feeling the pain of carrying me around in his knees and back. He has
taken over all my house hold responsibilities for the last four months with
help from my Mom who is our constant rock and our wonderful friends.
By the way, Dan is the most amazing husband in the universe...he is my
hero!!! I am so thankful for my partner in life...in SICKNESS and in
health!!
Much love,
Rebecca
Thank you so much to all of you for your prayers and kind reply's from my
last email. Your words and encouragement mean so much.
I just wanted to send a brief update to let you know that I spoke to the
neurologist an hour ago and based on the fact that my symptoms have been so
bad he wants for me to start the antibiotic IV treatment even before we get
the spinal tap results back. If we wait it will be 5 weeks minimum before I
start treatment as I cannot get the spinal tap for another two weeks and it
will take two weeks to get the results and another week to get me set up for
treatment. He feels based off the severity of my symptoms it would be good
to start ASAP.
So my Spinal Tap is on the 23rd and he would like to start treatment within
the day or two following the test. This gives me only two weeks to wean
Malakai from nursing which he still does three times a day. Please pray for
both of us that the process is smooth as this is especially emotional for me
because I have always let my children wean naturally. Malakai just turned 1
years old last week!!! I can hardly believe it!
The only way any of this will change is if the Lyme specialist my
neurologist is consulting with (who I cannot see personally because she does
not take my insurance) does not agree with putting me on this treatment
ASAP. The neurologist feels the specialist will agree based on my symptoms
and the positive blood test. He will talk with her the end of the week and I
will know more then.
Again, I will let you know more details as they come. Please continue to
keep me in your prayers as daily life is difficult around our house and Dan
is feeling the pain of carrying me around in his knees and back. He has
taken over all my house hold responsibilities for the last four months with
help from my Mom who is our constant rock and our wonderful friends.
By the way, Dan is the most amazing husband in the universe...he is my
hero!!! I am so thankful for my partner in life...in SICKNESS and in
health!!
Much love,
Rebecca
2nd Email...My LYME DIAGNOSIS...17 years late...dated 6/5/2008
Dearest Family & Friends,
It as been a while since I have been able to send out a health update. Last
time I shared I has been struggling about a month. Well it is now the first
week of June and I have still not recovered after 4 months.
I started going to see more doctors to make sure my diagnosis was still
Epstein Barr / Chronic Fatigue and that there was nothing else going on. I
have had lots of blood work done, and MRI of my brain and I began seeing a
neurologist for the possibility of Multiple Sclerosis (MS). In the process
he ran some more involved blood test and I received a phone call yesterday
that I have been diagnosed with Lyme Disease.
I have been tested for Lyme disease multiple times since my symptoms first
started at age 15 but it has always come back negative. I have since found
out that labs are notorious for getting it wrong so I am thankful that this
doctor did a more extensive test and found it.
It is mixed emotions but mostly after 17 years of suffering with an illness
no one understood and could not do anything about I am relieved to have a
diagnosis with more clarity. All of my symptoms fall under the disease so it
makes me feel like I am not crazy and there really has been something very
wrong for a long time.
The bad thing is that I have gone undiagnosed for 17 years and the best way
to treat Lyme is to catch it within the first few months. According to my
symptoms I would be in stage 3 of the illness (there are only three stages)
which means the disease has effected several parts of my body and the doctor
suspects that it is in my neurological system.
So, the next step is for them to do a spinal tap on me in order to confirm
that the disease is in the neurological system and to also test for other
diseases with similar symptoms. They are also trying to fully rule out MS
and by doing the spinal tap and an MRI of my neck we should know for sure.
Right now the doctor feels optimistic since my brain scan came back clear of
legions. The spinal tap is on June 23rd at 11:00am if you can remember me in
prayer.
If the spinal tap confirms the Lyme disease is in the neurological system
they will start me on one month of daily IV antibiotics at home through a
pic line. I am hoping that will start no later than the first week of July.
Since Lyme disease is a bacteria they feel the antibiotic should kill it
and my symptoms should improve over time. Some doctors say it is necessary
for ongoing treatment other do not but with the length of time it has been
in my system I am not sure that one month will solve the problem. We will
see...
This is all very new to me and I still know very little but you know me...I
am already reading everything I can get my hands on. I am not changing
anything I have been doing regarding nutrition, exercise, etc.. as the most
important thing is to boost my immune system to fight the disease.
Please remember me in your prayers as my symptoms are still very bad. I
struggle most days to walk and have quite a bit of joint pain and stiffness
especially in my hips and neck. I am very week and struggle with my memory,
writing and speech at times. I have had a very difficult time breathing when
my body gets week and was rushed to the emergency room two weeks ago when it
got very bad. Still lots of fatigue and weakness and ironically I have also
had insomnia the past week so sleeping has been rough. My main concern is
still not being able to care for my children or my household without a lot
of assistance.
I know so many of you have been praying and I so feel and appreciate your
prayers. My husband, mom, family and friends have been amazing and have
carried me and my kids through this difficult season and I am so thankful
and blessed.
I know the recovery may still be long but there is new hope that there is a
light at the end of the tunnel. I will keep you informed as I know more.
Thank you again for your love and prayers!!!
Love,
Rebecca
It as been a while since I have been able to send out a health update. Last
time I shared I has been struggling about a month. Well it is now the first
week of June and I have still not recovered after 4 months.
I started going to see more doctors to make sure my diagnosis was still
Epstein Barr / Chronic Fatigue and that there was nothing else going on. I
have had lots of blood work done, and MRI of my brain and I began seeing a
neurologist for the possibility of Multiple Sclerosis (MS). In the process
he ran some more involved blood test and I received a phone call yesterday
that I have been diagnosed with Lyme Disease.
I have been tested for Lyme disease multiple times since my symptoms first
started at age 15 but it has always come back negative. I have since found
out that labs are notorious for getting it wrong so I am thankful that this
doctor did a more extensive test and found it.
It is mixed emotions but mostly after 17 years of suffering with an illness
no one understood and could not do anything about I am relieved to have a
diagnosis with more clarity. All of my symptoms fall under the disease so it
makes me feel like I am not crazy and there really has been something very
wrong for a long time.
The bad thing is that I have gone undiagnosed for 17 years and the best way
to treat Lyme is to catch it within the first few months. According to my
symptoms I would be in stage 3 of the illness (there are only three stages)
which means the disease has effected several parts of my body and the doctor
suspects that it is in my neurological system.
So, the next step is for them to do a spinal tap on me in order to confirm
that the disease is in the neurological system and to also test for other
diseases with similar symptoms. They are also trying to fully rule out MS
and by doing the spinal tap and an MRI of my neck we should know for sure.
Right now the doctor feels optimistic since my brain scan came back clear of
legions. The spinal tap is on June 23rd at 11:00am if you can remember me in
prayer.
If the spinal tap confirms the Lyme disease is in the neurological system
they will start me on one month of daily IV antibiotics at home through a
pic line. I am hoping that will start no later than the first week of July.
Since Lyme disease is a bacteria they feel the antibiotic should kill it
and my symptoms should improve over time. Some doctors say it is necessary
for ongoing treatment other do not but with the length of time it has been
in my system I am not sure that one month will solve the problem. We will
see...
This is all very new to me and I still know very little but you know me...I
am already reading everything I can get my hands on. I am not changing
anything I have been doing regarding nutrition, exercise, etc.. as the most
important thing is to boost my immune system to fight the disease.
Please remember me in your prayers as my symptoms are still very bad. I
struggle most days to walk and have quite a bit of joint pain and stiffness
especially in my hips and neck. I am very week and struggle with my memory,
writing and speech at times. I have had a very difficult time breathing when
my body gets week and was rushed to the emergency room two weeks ago when it
got very bad. Still lots of fatigue and weakness and ironically I have also
had insomnia the past week so sleeping has been rough. My main concern is
still not being able to care for my children or my household without a lot
of assistance.
I know so many of you have been praying and I so feel and appreciate your
prayers. My husband, mom, family and friends have been amazing and have
carried me and my kids through this difficult season and I am so thankful
and blessed.
I know the recovery may still be long but there is new hope that there is a
light at the end of the tunnel. I will keep you informed as I know more.
Thank you again for your love and prayers!!!
Love,
Rebecca
1st Email I sent out after becoming bedridden in Feruary '08....dated 2/28/08
My Dearest Friends & Family,
I just wanted to send a quick update to you all to let you know how I am
doing. I think most of you know that I have been bed ridden with my Epstein
Barr/Chronic Fatigue Syndrome since February 1st. It has been a month
today and I am not doing a whole lot better. In the last two days I have had
a bit more energy and my legs have been a little more stable on my walks
back and forth to the bathroom (the most exciting thing I do all day!!).
I spent last week at my Mom's with Kai and she took incredible care of us.
Dan was left home with the older two and was relieved to have a little break
from taking care of all of us. Unfortunately my Mom took a bad fall in the
house the last day we were there and is still recovering. Fortunately
nothing was broken and she is beginning to feel better.
I have had some very bad days where nothing works (legs, arms, hands,
fingers) and everything is very week and days with a lot of pain in
different parts of my body. I have not been able to walk normally since Feb
1st and have hobbled around, crawled or been carried. None of my symptoms
are new. My doctor has run blood work and we are waiting on those results.
He is fairly secure that nothing else is going on but this is an extreme
response to the last 9 mths of my life that have been totally exhausting due
to stress, busy schedule w/ work and kids, new baby, nursing, sleepless
nights and no time to focus on my diet and health.
I have struggled with this illness for 17 years now. The last time I was
bedridden for this length of time was before I had children. I have minor
relapses monthly and most of the time try to ignore the seriousness of the
illness. This relapse is truly a wake-up call that I have to make my main
concern my health and my diet which has proven to be the only long term
answer to this illness. When I am strictly on my diet which includes healthy
eating, regular exercise, sunlight, sleep, stress management and a
controlled schedule I am at 100%... but when I ignore these things (as I
have since I got pregnant with Kai) I am setting myself up for relapse.
Before my pregnancy I was strict with my diet and health for 6mths without
exception and I had more energy than I have had in my entire life along with
being symptom free. Once I got into a rhythm it was not hard to manage and
getting back to that is my current goal.
I would appreciate everyone's prayers during this time. Dan is working full
time just to take care of us all(doing an amazing job). Having a baby and
two young children while having your wife confined to bed and keeping up
with her very demanding diet is not easy. He is also handling all our work
concerns by phone with our team in Indiana. We had to cancel our three week
trip out to meet the team due to my illness. They return on Monday and we
will then have to figure out how to juggle work in with everything else.
I am hopeful to be back on my feet sometime in March but expect that it
will be some time before I am back to a regular schedule. I will be cutting
back on work considerably as this relapse has proven what I did not want to
recognize and that is that I am not superwoman and something has to give.
Please pray for me as I set out a new path for myself and set my priorities
as a wife, mom and missionary.
I miss you all. I know I had promised some of my girlfriends here on Long
Island play dates with the kids and time to get together over the last two
months. I am sorry that has not happened but I promise it is one of my
priorities upon recovery. I have not been able to call or email very many as
even phone conversations and typing has been exhausting. Please feel free
however to give me a call or send an email as I would be happy to hear from
everyone.
I will send another update when there is some change (we will hopefully get
a news letter out this month about my condition). Love you all and thank you
for your love and prayers!
Love,
Rebecca
I just wanted to send a quick update to you all to let you know how I am
doing. I think most of you know that I have been bed ridden with my Epstein
Barr/Chronic Fatigue Syndrome since February 1st. It has been a month
today and I am not doing a whole lot better. In the last two days I have had
a bit more energy and my legs have been a little more stable on my walks
back and forth to the bathroom (the most exciting thing I do all day!!).
I spent last week at my Mom's with Kai and she took incredible care of us.
Dan was left home with the older two and was relieved to have a little break
from taking care of all of us. Unfortunately my Mom took a bad fall in the
house the last day we were there and is still recovering. Fortunately
nothing was broken and she is beginning to feel better.
I have had some very bad days where nothing works (legs, arms, hands,
fingers) and everything is very week and days with a lot of pain in
different parts of my body. I have not been able to walk normally since Feb
1st and have hobbled around, crawled or been carried. None of my symptoms
are new. My doctor has run blood work and we are waiting on those results.
He is fairly secure that nothing else is going on but this is an extreme
response to the last 9 mths of my life that have been totally exhausting due
to stress, busy schedule w/ work and kids, new baby, nursing, sleepless
nights and no time to focus on my diet and health.
I have struggled with this illness for 17 years now. The last time I was
bedridden for this length of time was before I had children. I have minor
relapses monthly and most of the time try to ignore the seriousness of the
illness. This relapse is truly a wake-up call that I have to make my main
concern my health and my diet which has proven to be the only long term
answer to this illness. When I am strictly on my diet which includes healthy
eating, regular exercise, sunlight, sleep, stress management and a
controlled schedule I am at 100%... but when I ignore these things (as I
have since I got pregnant with Kai) I am setting myself up for relapse.
Before my pregnancy I was strict with my diet and health for 6mths without
exception and I had more energy than I have had in my entire life along with
being symptom free. Once I got into a rhythm it was not hard to manage and
getting back to that is my current goal.
I would appreciate everyone's prayers during this time. Dan is working full
time just to take care of us all(doing an amazing job). Having a baby and
two young children while having your wife confined to bed and keeping up
with her very demanding diet is not easy. He is also handling all our work
concerns by phone with our team in Indiana. We had to cancel our three week
trip out to meet the team due to my illness. They return on Monday and we
will then have to figure out how to juggle work in with everything else.
I am hopeful to be back on my feet sometime in March but expect that it
will be some time before I am back to a regular schedule. I will be cutting
back on work considerably as this relapse has proven what I did not want to
recognize and that is that I am not superwoman and something has to give.
Please pray for me as I set out a new path for myself and set my priorities
as a wife, mom and missionary.
I miss you all. I know I had promised some of my girlfriends here on Long
Island play dates with the kids and time to get together over the last two
months. I am sorry that has not happened but I promise it is one of my
priorities upon recovery. I have not been able to call or email very many as
even phone conversations and typing has been exhausting. Please feel free
however to give me a call or send an email as I would be happy to hear from
everyone.
I will send another update when there is some change (we will hopefully get
a news letter out this month about my condition). Love you all and thank you
for your love and prayers!
Love,
Rebecca
Starting my blog...for the second time around!
So what happened to the original "Rebecca's Health Updates" Blog????
FUNNY STORY...while trying to make my life easier, as my husband always does, he changed some things on my Google account which unbeknown to him accidentally deleted my blog :( ... cue tears...lots of tears!!!
After I got over the SHOCK of wondering if all of my diligent blogging and archiving of my journey was gone I realized I had saved everything in some different places on my computer...THANK YOU LORD!! Now to find the time and strength to put it back together...well, got the time today because I'm bedridden once again, as far as strength, well...I can type...so hear we go!!!
All the initial post you will find here are pasted in from my original blog but I will put the original dates on each one so you know when they where written and hopefully it will be easy to go back and get the WHOLE STORY...if you so desire!!
Hope you will stick with me as I plan to be much more diligent with my blog and give you more of an inside look into the world of Lyme Disease!!
Subscribe to:
Posts (Atom)