A little insight into my frustrations may offer clarity:
1 - a friend was diagnosed with MS at a highly reputable MS clinic based on multiple lesions and neurological symptoms. After the first treatment, his symptoms spiraled into a neurological hell of sorts. It turns out, he has Lyme disease, and the drugs he was given for MS allowed the spirochete (B. Burgdorferi) to run rampant and make him more ill. He would have been much better if he were initially and correctly diagnosed with Lyme and treated with antibiotics. Now, he can barely walk.
2 - When you have someone that posts this:
"Thanks for your knowledge!
She has been put on intraveneous antibiotics and within 2 days is regaining the sight in her eye. Her voice which has been hoarse for years is sounding normal. Her energy level has also dramatically increased! The words 'I feel good' have been heard! WOW! She says that her contact at Johns Hopkins is a "Lyme" doctor and they are treating her for the infection first. How interesting this invading disease is. I live in Florida and we have ticks but our physicians don't view them as a threat...I wonder how long that will last. I believe we have to be our own health advocate in todays healthcare system. I am more informed about Lyme Disease and its effects than most just by a bit of research. It's a shame that the medical community does not want to go out on a limb when things have yet to be proven without any doubt..Sadly how many people suffer from this ignorance. I know in my heart and in my brain my sister will be OK and hopefully because of this correlation of symptoms and diagnosis a another door can be opened for the next patient. Thanks so much for your energy and enlightning information!"
The person needs advice about Lyme, not MS. The first conclusion is often MS (as in this posters case), especially if lesions of the brain are present, and the treatment for MS is horrible for a Lymie. My entire point is that MS has no firm etiology and is a diagnosis of exclusion. Lyme can cause lesions on the brain and can be detected with the correct lab tests, with emphasis on correct. If they treated this woman as an MS patient, they were jeopardizing her chances at recovery from Lyme disease and jeopardizing her health, for that matter. Nobody answered his/her post for what, 6 days? I'm just glad they took the Lyme diagnosis seriously. Your post is meant to be objective, which was your intention, but it is not in my eyes. Or, at minimum, it was not perceived as objective by myself and possibly others. It is swayed toward the diagnosis of MS, in my opinion. One can't fool around with the Lyme diagnosis b/c the % of LLMDs is so small that it gets blown off. I suffered for three years and nobody could give me a diagnosis because all of my symptoms were "MS like", but I had one lesion and a normal lumbar puncture. I was hoping for MS b/c at least I would have a disease process as an answer and start treatment. Instead, they said nothing is wrong and they didn't know why I was in chronic pain and having neurological symptoms.
I guess I can't get past the idea that doctors would rather pin a diagnosis on someone (like MS, Lou Gherig's, Parkinsons, etc) that has no clear etiology. I know people that are diagnosed with MS with no lesions. Whether their diagnosis is correct is beyond me. Lyme disease has a clear etiology - a bacterial infection. The Lyme controversy comes in when you claim "chronic" Lyme disease is causing you grief as most docs don't recognize Lyme as a chronic issue.
Either way, if our debate or difference of perspective allows others to think about the MS vs. Lyme debate more closely, then we have accomplished something positive. I am a Lyme advocate and hope that we can continue to both learn about both illnesses, since Lyme is the "great imitator".
Regards,
Hope