MS is my old "comfort zone" but now I'm diagnosed with Lyme

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ShawnCOmtngrl
Regular Member


Date Joined Apr 2007
Total Posts : 35
   Posted 4/9/2007 10:28 PM (GMT -6)   
Hi everyone! 
 
I have been chatting with great people in the Lyme disease forum, and thought I'd connect with new people, given that I have layers of things going on. 
 
I was diagnosed with MS at age 19 after complaints of numbness in my hand, and an MRI showed lesions on my brain.  My "related disease" tests tests were negative.  HMMMM  So I got my MS diagnosis, and a second opinion of agreement to boot.  I am now 32.  In my 13 years of having "MS", my symptoms have been mostly fatigue and numbness.  That is, until November 2004.  I started to drag my leg while exercising...  Why?  I have no idea!!!  I wasn't in pain, it was almost as if my hip joint was giving out.  Then in May 2005 the pain hit HARD in my left hip joint.  I started to see doctors, starting with orthos and my neuro, of course.  In a year's time I had 8 MRI's, CT scan, bone scan, muscle testing, saw more than 25 doctors, had HIP SURGERY at age 30, then went to Mayo Clinic, thinking they could tell me what was wrong.  Even MAYO CLINIC didn't know!!!  The Mayo doctor actually apologized to me and told me to just go to a pain clinic for my debilitating hip pain that kept me on crutches and lead to the surgery. My mystery was featured in the news, etc., etc......  A friend who read the news story told me I should get tested for Lyme disease.  I told her "thank you so much for the suggestion, but I have been tested twice, and the results were negative".  She then told me "Sweety, you don't understand, the CDC approves a Lyme disease test for mainstream doctors to use called the ELISA which is only 65% accurate, and you need to get tested via the Western Blot test (which is 99% accurate) at a special lab (called Igenex in CA) that tests for all of the "bands" of Lyme bacteria.  So I did it.  3 weeks later I found out that I tested positive for Lyme disease. 
 
So, I started seeing a "Lyme-Literate" MD.  Living in Colorado, this is no easy task.  MS is common in CO, not Lyme Disease!!!!  But wait!  Lyme disease causes lesions on the brain, too?  So I have been asking my Lyme doctor, myself, and many others....  Have I/Do I have MS at all?  This is my question to be answered with time.  My doctor doesn't think so, and the ideas behind all of this are so big that I'm nervous to write them down to my MS friends...  So I'll save that for later.  For now, I am being treated with IV antibiotic medication.  My pain started to go away within days, but I have dipped after a few weeks of treatment.  This is normal.  I am anxious to see if my lesions will go away or not after more treatment.  Most of all, I hope to work again, and I hope to help answer big questions about links between Lyme and MS....  On the Lyme forum there are web links to articles which hypothesize that these 2 diseases may have the same etiology, one article I have read went so far as to say that Lyme bacteria (called spirochetes) may even CAUSE MS....Remembering that MS simply means "many scars" as of today's medical knowlege, I am open to ideas around this.  Further, I have had a NUMBER of long-time MS-diagnosed friends who have tested positive for Lyme disease in the past couple of years, just like me.  There will be a story on 20/20 (I believe that was what my Lyme forum friend said) in May which will feature this relatively un-publicized connection between 2 serious diseases.  A man who was headed for a nursing home because of the severity of his MS found out he had Lyme disease, and also got treated with IV meds.  8 or 9 months later, he reported being 90%-95% better!!!  I hope to have similar success!!!  My own Doctor had a VERY similar experience, only his original diagnosis was ALS.  He was told in 2003 to get his affairs in order because he had about 2 years of life left.  He found out he had Lyme, started the IV antibiotics and started his practice as a doctor again January 2005!  His name is Dr. David C. Martz, and his story is on-line if you would like to "Google" him. 
 
I will stay in touch here, as well, as I go on this journey which feels bigger than myself and my own wellness.  In fact, I've contacted the Montel Williams TV show about my story.  So much more to say, but thank you for reading to the end!  I hope this is well-received.  I understand it could be uncomfortable to read.  It was hard for me to hear a year ago.
 
I am wishing the best healing and learning for you all....  Strength, courage, and the ability to DISCERN what you are told. 
Stay strong!
 
(Don't know if I have MS, after 13 years of living with it, injections, MS walks, being an intern with the MS Society, etc.)
 
 

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 4/9/2007 11:35 PM (GMT -6)   
I wish you lots of luck and I hope you find the answers you are looking for. Some of us have gone down the lyme road. For myself it just brought up a lot more questions than answers. At some point I had to put faith into my doctors and trust that they are the ones that have earned a degree. They have a plaque on their wall that says "Neurologist".

Lysha
Undiagnosed

Things ruled out- TIA's, Lyme, Lupus, Crones, Narcolepsy, CFS, Fibro, Parkinson's, arthritis, and brain tumors.
Still nobody has answers.

Started my journey 1/06


When everything's coming your way, you're in the wrong lane.


sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 4/10/2007 6:37 AM (GMT -6)   
My mother was diagnosed with MS back in the 80's, although I have no idea how long her symptoms may have been around. It caused a lot of issues for her- in fact, her work let her go for bogus reasons after she was diagnosed, because they considered her a liability (insurance wise, I'd guess). She took them to court.

My sister and I both have been tested for MS.. and a slew of other things. So far I've tested negative for everything, and yet my symptoms are getting worse. It was only recently that I knew Lyme could be a possibility. I asked my neuro to test me, and she said she'd do it.. but I think it's merely to humor me at this point. I'm on pain meds (which don't work much- don't work at all for the spasticity in my legs, that is spreading to other parts of my body. Not even muscle relaxers work). I'll test, because it would be stupid (in my opinion) NOT to test, if at the very least to prove I *don't* have it. But I want to get the right test... everything I've heard about this ELISA test scares me.

If I test positive, I told my mother (and sister) that they really should consider getting tested as well. Maybe my mom *just* has MS. But I printed off the information on the ties between MS and Lyme Disease (it's fascinating!). And she is actually going to get retested, with a new doctor. I think it's awesome she's even considered it. And also, if I test positive, I plan to get my children tested. Both have their quirks, but my son has Autism. Knowing that there could be some correlation is concerning to me.


I wish all of those who are suffering with MS, the very best. I do also hope that the more MS'ers who are later diagnosed with LD, will lead others to at least get re-tested by IGenex or another reputable lab. If anything, at the very least, to rule it out.
(undiagnosed) chronic pain, for nearly 10 yrs and counting..

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