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!
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