I too asked the same question: but for me I had MS for 20 years! I started Copaxone because my neuro didn't want to see me grow old and end up in a wheelchair!
that scared me enough to begin searching and reading about the similarities between MS and Lyme disease.
After many months, I finally found a doctor who specializes in tick-borne illnesses, got a test done by a lab that tests for ALL the bands, and along with a clinical diagnosis.....found out I have lyme disease.
I'm in treatment for 9 months and am feeling GREAT!. My lesions have lightened,,,,and some are no longer noticeable! I have no new enhancing lesions either...
I try not to say "misdiagnosed",,,I always felt my neuro had my best interest in hand. These good docs need to be educated on testing for lyme disease. The ELISA test is completely unreliable! The sickest of us get a "negative" test result. Testing must be done at a lab like IgeneX in CA; and then doctors must clinically diagnosis us...just like MS!
for example, heat is something that bothers me, but I found out that the borrelia bacteria is the reason why,,,this bug LOVES the cold! this is only one of the many symptoms that go along with lyme disease, light sensitivity, tingles, numbness, vertigo, double vision, trigeminal neuralgia, L'Hermittes, brain fog, are just a few symptoms of Lyme disease.
So, with your very good question, join us on the lyme board ask some questions, and you too just might find yourself on the road to recovery!
wow i am at the same place in a way right now-- i was diagnosed with ms last year -- they think i may have had it for 10 years though, the copaxone made me worse so i have stopped that and am decided what therapy to do next-- thinking about tysabri- but then i remember my doc thinking in the begining maybe it was lyme but they never tested me--
my family and i had a big discussion and they asked that i make sure to get tested for lyme and also b12 deficiency before going on any other of the tough ms meds.. i have always beena very big outdoors girl (till now =( ) even hiked 110 miles of the pct trail out west when i was 22...
those little bugs could have gotten to me for sure-- but anyway i am curious about lyme -- how is it treated and is it curable-- i need answers-- i want to make sure i cover all bases and make an educated decision -- i would love to hear from you
hmm, where to start. First of all Lyme disease is not an auto immune disease. Quite the opposite. Research tells us that our bodies are NOT invading ourselves; it's a bacteria that is inside our cells, and there are lots of other co-infections that go along with Burgdorferi Borrellia.
Is Lyme disease curable? yes, is it difficult to eradicate? yes, but it is possible.
the best news is that people that are suffering are known to "stop" progression in their tracks! Getting this insidious bacteria out of our cells is why we heal and get better.
There's lots to learn and read about Lyme disease, but the first step is to rule it out. And unfortunately, testing is poor!
Here's an article about Lyme Disease: it talks about why testing is unreliable, why so many of us are misdiagnosed, along with additional links.
I hope Zoe, you consider testing for Lyme along with making a decision of any of the disease modifying drugs.
(mod note- I've replaced the full article you posted with a link instead. Please read the forum rules primarily 8 and 9. Any questions, please contact me. Thanks!)
Post Edited By Moderator (Kimber) : 7/12/2007 3:56:59 PM (GMT-6)
i talked with my neuro this morning and he agrees it is something we should look into -- so i will be seeing him next week i believe and i will advocate for the correct testing-- i received your email and i will be using the resources -- thank you
welcome to the board.
I am one of those who was misdiagnosed in 1999. I have lyme and probabally did then too (looking back at test results) although 6+(I've lost count) prominent neuros insisted it was not lyme.
Untreated lyme has caused my condition to worsen and my lyme Dr says because it went untreated so long it may have caused MS or a MS like illness. She does not know if the neuro damage is reversible.
Long story short I highly recommend you research and check out all options. BTW lyme gets into the CNS and causes demylenation. Lessions in the brain as shown on MRIs could be lyme as well as MS.
Good luck to you in your search for answers.
wow-- so lyme can cause ms? is this proven or researched? so you can have both-- tough stuff-- i am gonna be really looking into this hard now--the doctors think i have had ms for 10 years so that means i could have lyme for that long-- which ever it is or both but i am gonna beat it- i will get answers and stay positive in my search for the truth
I don't think it is proven. There is a lyme Dr, Dr P in Ct who has done some research and written some papers about the connection between the two diseases. He is a smart guy who graduated from Harvard or Yale medical school (can't remember which right now).
There was a study done about spiroketes (lyme bacteria) being found in the brains of MS and ALS patients. It was a high percentage of patients who had this finding so I don't think it was a coincidence. I will look for that study if you want.
Getting treatment for lyme as soon as you know you have it is critical. I think I have had lyme since I was a kid and I am 46 now. When my immune system was surpressed this began to wrek havoc. I was able to probably keep it check for many years because I lead a very healthy lifestyle.
I would be very interested in reading up on that study done-- i still do not know how they test for lyme and what it takes to find out-- i know routine blood test is innaccurate so i have been told-- i wantto be asking for the right tests--
i hope you are not in too much discomefort and can continute to heal-- are you being treated still--
there is a high percentage of false negatives, and even higher with the standard labs (quest, labcorp). Testing neg doesn't mean you do not have lyme.
If you have any questions about the testing e-mail me.