Good Planning...I need to get me some of that!

I have been wanting to start updating my blog again for some time. So many Lyme patients reach out to me weekly. I want my journey to be honest. (Which wont always be pretty). My HOPE is to help and support those of you who are fighting along with me. If you are new to my blog, WELCOME! 

Whether your struggle is chronic illness or you are struggling with life's everyday challenges let me start by saying, "Me to".  

It's been about 2 years now that I have been on a good path with my continued healing/maintaining. I am now a functioning Lyme patient, able to do life most of the time while standing on two feet. This is a welcome change! But it's amazing how easily I can fall back to the old habits that lead to the severity of of my illness in the first place. Its' the pit fall of being a type A, perfectionist, must please everyone, kind of person. 

So now you know. 

I don't have it all together. 

Nor will I ever. 

Which means I have to be committed to loving myself, my mistakes, my weaknesses as much as I embrace my strengths. I'm working on it. Actively. I want to create healthier patterns that will make for a long term "healthy" me. So I have decided that instead of focusing so much on all my self help healing books and all the "new" things (there are always new things) I must try to fix this chronic illness, instead I am going to focus on healthier patterns.

When I've made this my focus in the past, I was always at my healthiest.

This morning Proverbs 3 vs 21-24 summed it up:

 21 My child, don't lose sight of good planning and insight. Hang on to them, 22 for they fill you with life and bring you honor and respect. 23 They keep you safe on your way and keep your feet from stumbling. 24 You can lie down without fear and enjoy pleasant dreams. 

I need a plan. A plan that holds me securely to the patterns that equal success. Success for me is defined by being the healthiest I can be... first for myself (that's the hard part), then for my husband, children, family and friends and lastly for the work God has called me to.

Health. For a chronically ill person that is hard to define. There is never a day without a symptom or reminder that I live in a broken body that cannot keep up with, well, most everyone. Problem is, my mind is alive, healthy (even with Lyme brain) and is not often willing to listen to its broken counterpart. I am thankful for that strong mind. It kept me alive, saved my life and allowed me to learn how to HOPE (but that's a blog for another day ;).

What I need to do now is put that strong mind to work and search after wisdom, balance and that "happy place" that leads to my definition of success. The tricky part is, that never happens by accident. Good planning is the only thing that ever gets us anywhere we truly want to be. Bad planning leaves us wandering, lost, overwhelmed and unproductive.

My chronic illness leaves me with limitations. I hate that word. But to be honest, we all have them. We do better when we embrace them as "healthy boundaries". When we start creating healthy boundaries in our lives we must also be ready to disappoint some people. I cannot be everything to everyone or I will be nothing to those who are my priority. 

So "No, I wont be able to make it" and "No, I cannot take that on right now" have to become daily verb-age for me.  These are hard words for us "people pleasers". But I am planning to start using them because I want to succeed. No explanation needed. Explanations are exhausting and my need to always give one is a weakness. I want to be healthy. Period.

So today I join a challenge group that is going to help me with the planning part. I am excited for the support. It will provide that "good insight". This planning and insight are there to produce the healthy, balanced patterns I need for success. 

My priorities/healthy plans are:

Find time with God daily.
Eat clean. 
Exercise regularly. 
Place boundaries around my active hours of the day.
Have fun with my family and friends.
Rest.

These healthy patterns are simple. Life giving. They are my tools for success. I will place them first in my life...everything else will have to pencil in an appointment. 

If you need me, I'll be resting easily with my "pleasant dreams" (Prov 4:24)...and now that I have put it out in blogger world, you can hold me to it :)

Yes...its been a year...wayyyyyy overdue for an update!!

Sooo...I totally broke my promise from my last post and did not blog for...well...A YEAR :(

To be honest, this has been a VERY difficult year emotionally for me. I have been fighting to beat this disease so I could get back to being a wife, a mom and to the work of our ministry with All Access.

I spent the first six months of this year FIGHTING to keep my ministry active and alive and the second six months laying it down and realizing my journey to heal had to remain number 1. To be honest... I was DEVASTED!!! I did not want to do this "fighting Lyme Disease thing" anymore. I wanted my life back and it hurt so much...I did not want to talk about it or blog about it.

I do regret that now...I wish I had the courage to share that pain during the process but I am praying I have more strength and courage in 2011 to share the HIGHS and LOWS with you all. So I do want to start by taking a moment to go back and  record my 2010 year...not so much the emotional journey (I will write more of that in some separate blogs) but I want to remember the "physical" process and hope it will encourage some other Lymies to continue the FIGHT and know your NOT alone!!! I did write 2 short blogs during 2010 but never posted them to my blog (no idea why??). Rather than delete them I decided to go ahead and post them with date they were written, so they are just below this email if you care to read :)

So how fast can I scoop 2010...hmmm...

WINTER 2010: In December 2009 I was hit with another MAJOR set back. What I thought was just more Lyme pain turned out to be a severely bulged disc in my back. This was a reoccurring issue from 2002. It took me over 2 years to rehab the disc without surgery from 2002-2004. This time, it was worse...even my amazing Dr that rehabbed me last time and hates surgery said...SURGERY!!! Of course this was not good news with the Lyme recovery. My specialist wanted me to TRY and rehab while I worked hard on researching the best surgery options...ps...there are really no good options as a Lyme patient!!

 Rehab included: back brace, traction 2 to 3 times a week, no sitting, no bending, no lifting, mostly laying...all day long!

The most frustrating thing was that as of the beginning December 2009 I had just finished a six week round of oral Doxy along with pulsing oral Flagyl and I was feeling more energy than I had had since I first fell ill in 2008..and now I was put back to bed for my back :( MENTALLY...this was super challenging!! Rehab continued through May and as my health declined once again, I was back to pulsing oral Doxy along with my weekly trips into the city for IV Vitamin treatment.

SPRING 2010:  By May we thought that maybe I would be able to sneak through this without surgery as I had begun to feel better after 4 months of rehab. On May 10th I woke up with a very Strong Herx reaction that landed me in the hospital thinking maybe my bulge had pressed into my spinal column and I may need immediate surgery....very SCARY!! Welllll...instead it was a Herx that had caused a nerve to "freak out" and cause some crazy symptoms. The positive was this episode forced another MRI which showed us that all the rehab had WORKED :) I WASN'T curred, in fact the Herx had really aggravated the nerve and I was in a bunch of pain for over a month...but surgery was no longer even an option and homeopathy and acupuncture became my answer to calm the nerve!!! The Surgeon said it was a MIRACLE!! I agree...
PS...My gut feeling is that both my herniations (2002 & 2009) had to do with the LYME and it causing weakness in my spine. I think that until I am able to really exercise and strengthen my spine, abs and all the muscles that protect those discs...I will still be at risk to re-herniate. I am continuing all my rehab in hopes of the day I will be strong enough to really exercise again!!

I also had another pretty major episode in May. My weekly IV Vitamin Therapy brought on a severe episode of vomiting, diarrhea and almost passing out in the Specialist office. Fortunately my Specialist was still in the office and took me straight back to test my sugars. I was at 400..normal is between 70 to 90. This promoted a 5hr glucose test and a diagnosis of hypoglycemia and borderline insulin resistance. This mean't more tweaking of my already ridiculously strict diet...arrrghhhh...and lots of finger pricks as I tested my blood at least twice a day. We still have no full answers on how this all works into my recovery...still a bit confusing for me...we will see!

SUMMER 2010: I NEEDED A BREAK...every Lyme Patient has this moment!! You are DONE!! I was actually feeling good...having some full days of activity...WHAT!!! I know...and I was afraid to take anything that may cause a Herx. I knew if I slowed down my treatment I would relapse...probably badly...but I NEEDED the break! It all came at a good time since we were MOVING...yes MOVING... into a new house after 11 years of building our family in 1 HOME...talk about major purging and packing!! Kind of a scary undertaking to a chronically ill Mom who rarely has a good day. BUT...God is good!! I had about exactly 3 weeks of mostly GOOD days :) Just enough to do the bulk of the work (with tons of help and NO LIFTING) and we where finally in our new home!!

By the first week of August I was reading on my new porch, enjoying the summer breezes and our new close proximity to a great beach...but then it started happening...the good days were less and less and all those horrible symptoms started taking over once again...the weakness being the worst!! I was desperate for my Specialist who was overworked and ungetable due to all the LYME on Long Island in the the summer. The relapse was happening...

FALL 2010: On Sept 28th I finally had my long awaited appointment with my Specialist...in my HOME!! Yes, my relocation out east meant that a good majority of my appointment would now be in my home because it was closer for my DR :) I admitted my self imposed BREAK...he kindly evaluated and put me back on treatment...Doxy, Herbs (Samento & Banderol) along with a more minimal list of supplements to try and keep my stomach stable...and then sent me for a ton of blood work! The most memorable moment was when we decided IV antibiotic treatment was worth pursuing...a huge step for me! One I wanted to avoid but began to feel peace that this was the right time and the right step.

After spending Oct and most of November on and off oral Doxy due to stomach issues and feeling pretty crappy...I knew IV antibiotic was the next best step! I waited to hear from my Specialist that maybe my Insurance had actually approved my IV treatment. This all led to a crazy few weeks right over Thanksgiving of me literally playing the middle man between my specialist, hospital, homecare company, home nurse, insurance company and nearly losing my mind!!! This is what it takes as a Lyme Patient to get the treatment that should be right at our finger tips..instead...if you don't fight...you get NOTHING!!

DECEMBER 2010: First week of December after literally 2 weeks of FIGHTING I finally had my first IV antibiotic treatment..exactly one week after I had my picc line placed in a hospital. Of course this success did not come without a set back...I almost lost the picc the night before my treatment started. A trip to the ER due to major pain in the picc arm and a loss of warmth in the hand led my specialist and myself to believe the Er DR would pull it...PANIC.. after all it had taken to get it put in :( Instead God intervened again and I had two super Lyme Friendly medical professionals take care of me...unheard of in Southhampton Hospital!!! GOD IS GOOD!!! The line was tested and all was good...my body or those "spirochetes" were just ticked off and wanted it out...but we said "NO" and eventually the pain subsided and all was well :) Its still hurts on and off but body is much happier with it now!

We started SLOW...my specialist was super worried about how I would handle the treatment. I could hardly get through Vitamin IV therapy without becoming VERY ill...how would I respond to IV antibiotic???? So 1 gram of Rocephin (half does) for 14 days was the starting point. I DID IT!!  After 3 weeks we moved to 2 grams and I have now successfully completed 2 weeks on 2 grams :)

LOW POINTS....Had some rough Herxing...totally stiff neck more than once, laid out flat for 48hrs at a time, weakness, major muscle spasms, loss of the use of my legs, major nero stuff, etc...the USUAL!! I also have become badly anemic once again and am back to NYC for IRON IV treatment along with Vit IV treatment twice a month. Hydration at home through the IV has also become a regular part of my treatment every other day. I also had to be carried out of church for the first time after 2 years of somehow avoiding that...humility continues to be a part of this journey!! I spent New Years Eve Herxing terrible, ruining my families plans to go out and wondering if this journey will ever end...which means...it was time to remind myself as I do often of the high points...

HIGH POINTS...My days in bed have been less lonely this year thanks to our 2009 Christmas gift of our puppy "Coco". I have never had a dog before her and she is my most faithful little friend! I was able to spend time talking and sharing with many other Lyme patients this year. This has become a new "priority" for me as we NEED each other!! I was also surrounded by my amazing family and friends who continue to love and support us daily!! I was able to be in the Briner Wedding, attend my sister in-laws wedding, attend YWAM's 50th celebration in Fla as well as many other special celebration here at home :)

I am a different person than I was almost 3 years ago...in every way!  Some have asked if I think IV antibiotics will be my "turning point"...I think the positive part of this question is that it has made me realize how content I am in NOT knowing the answer to it! I think I end this year with my HIGH POINT  being that I have peace in the process. I really have no idea when I will feel "well" or "normal" again...and that's OK!! I am resting in the process...its taken almost 3 years to get to this point but as I enter 2011 I feel that I have HOPE and PEACE all at the same time. If I find healing, or remission or just another year of more treatment...2011 will be successful...part of FIGHTING is RESTING and TRUSTING in the arms of Jesus!!


Soooooo...2010...was also a successful year!!! A year full of fighting, full of challenges, full of highs and lows in this journey with Lyme...but is was also the year I found PEACE!! Now my New Years resolution is to walk in that PEACE in 2011!! I pray for all of my fellow Lymies who are also suffering daily or for those of you who face your own daily challenges that you to will also find PEACE and REST in 2011!! HEALING is a daily journey...and we are on our way!!!

I can not end a post recapping the whole year without saying thank you to all those who prayed so faithfully!! Your prayers are felt daily and carry me in this journey...THANK YOU...and please don't stop!!

PS...so I guess the answer to my starting question is...not that fast...thanks for reading!! :( Ohhh..and I have so many other cool stories and lessons learned I know I want to share in future post...but we will leave that for the next one which will be less than a year from now...PROMISE!!

Oh How He Loves Us.... (written June 13, 2010)

Oh How He loves us...these are words I have been hanging on to for some months...words of truth that carry me through the days I struggle to stand under the weight of circumstances!  It has been a roller coaster since I last blogged. I have wanted to blog in the midst of it but sometimes that weight seems to steal my words and jumble my thoughts...lets sum up to bring us up to date:

November 2009: Came off 2 months of some heavy treatment and extreme Herxing to find there was finally some improvement. My ENERGY was so improved and Thanksgiving was an enjoyable time with family.

December 2009 & January 2010: Strange pain in my right hip which quicly escalated and truned into a limp sent me back to a new round with all my Drs and more test. To our surprise on Dec 12th we discovered a disc I had herniated back in 2002 had now re-herniated and far worse than ever before. SURGERY became the word of the day and a big concern as my body was not up to taking that hit...sooo we began therapy, praying for change and began looking into all our surgery options (aka...lots more trips to new Drs and surgeons)!!

February -April 2010: February1, 2010 first marked the 2 year anniversary of my relapse and unfortunately the end of my temporary burst of energy and reprieve from the aches and pains. Symptoms all began slowly escalating again so back to heavy treatment, more herxing, and fighting for energy daily. Could still see a marked improvement from last year so I knew although there was struggle we where moving in the right direction. I also went back to work full time with All Access which meant heaps of stress where piled on my already fragile state. It was a daily time of leaning into God for each 24hrs that lay ahead...I was a professional at living day to day at this point so to be honest it felt more normal than it has since this journey began...its a good thing as struggle brings change in our life and one day we suddenly look back and realize we have adjusted!

*This where I stopped writing this entry (see my post from Jan 2, 2011 for the rest of the scope) but I did post the words below to the song I had been hanging onto during this time. It is still a huge comfort to me and pray it will be the same to you as you see...OH HOW HE LOVES US!!

He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.


And oh, how He loves us so,
Oh how He loves us,
How He loves us all


Yeah, He loves us,
Oh! how He loves us,
Oh! how He loves us,
Oh! how He loves.


We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
And Heaven meets earth like an unforeseen kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…


Yeah, He loves us,
Oh! how He loves us,

Oh! how He loves us,

Oh! how He loves.

NEW Challenges for 2010...Blown Disk....Surgery Needed ASAP (written January 9, 2010)

Going through some new challenges with a blown disc in my back they found just before Christmas. I rehabbed this disc in 2002 but this time it will need surgery. With the Lyme Disease my immune system is very weak and I can only have a certain type of back surgery. Conventional open back surgery is not an option for me. This has also put most of my Lyme therapies and treatment on hold in order to protect my back. I ask for your prayers as I am trying to find a neurosurgeon who does what I need and will either help us financially or my insurance will cover it.

 I am back on my back again. I am restricted to lying and limited standing and walking. No sitting, bending or lifting for risk of permanent nerve damage in my right leg and foot. This has been very difficult to handle after all we have walked through in the last 2 yrs from my being bed & wheelchair bound to limited activity now back to being bed bound again. I was just beginning to make some headway with the Lyme when this all occurred!

 Praying for the right surgeon and surgery ASAP so I can rehab and get back to my Lyme recovery and being a wife and mother!  Leaning into God's promises knowing He will never give us more than we can handle!! Thank you for your prayers! 

WELCOME to my "resurrected" BLOG!!

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!!

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!

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!!

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!!

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.

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!!!

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!

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!

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!!

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!!

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!!!

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