So glad to hear an update from you and to hear that Mike has made tremendous progress compared to so many months ago. Mike, I am grateful that your treatment resolved so many of your symptoms. You are at a challenging place; but..
Remember to go back through your time line now. The clinical and diagnostic facts are there for you. Had his Lyme results come back negative, it would be confusing; but the fact that he has had positive results from treating a positive Lyme diagnosis is tell tale.
As care giver-researchers of this disease, additional symptoms can throw a monkey wrench back on the plate.
Keep the steroid treatment in the back of your mind for future reference in the event of symptoms that cause question b/c of its reputation for disseminating the pathogen deeper into the tissue while serving as an anti-inflammatory.
Lyme literate training teaches that if MS related symptoms are resolved w/Lyme treatment, it was most likely that the culprit was the pathogen fueling the autoimmune response. We are all pre-genetically disposed to so much that we cannot possibly know until times such as these. But, now he knows his immune weakness.
Bridge Mike's treatment w/immune support under the care of a reputable Lyme physician (let us know if we can be of service there) and if Mike would like to be evaluated by one of our top ILAD neuro-Opthalmologists, send me an email and I will forward the info to you. If this were Heth and these were the remaining symptoms visually, this is where I would go next. A tomography is a valuable word picture of what is going on behind that optic nerve and perhaps in the brain lining.
It is difficult to differentially diagnose these auto-immune complications; but we have experts who are trained and successful at doing so. It is often one step at a time as the body is treated and then requires time to respond.
You are clearly saying that he is symptom free; which is very encouraging. No, Lyme doctors (at least the numbers of docs that I have had the priv. of communicating with) do not automatically default everyone into this type of thinking; that statement was rhetoric and unfounded as a rule. Most are very wise physicians-turned-scientists who are astute at differential diagnosis; they have a grasp on the complexities that manifest with a later dx and deeper dissemination. As science continues to emerge with this disease (and its latent politics which caused your most unpleasant experience at Columbia - sorry to have heard that!) - and as our wonderful researchers and molecular biologists, pathologists continue with their work, we will have clearer answers.
For now, if this were my situation, I would focus on integrative approach under the care of one who is wise amongst the wise, to strengthening that immune system to protect it fm another relapse and/or flare knowing that Mike now has a history with autoimmune. I was dx. w/MS in the 80s. Along came Heth in the 90s. Immune support is pivotal.
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth
Post Edited (sojourner) : 6/22/2009 10:54:19 AM (GMT-6)