I think that, at the heart of this issue there is pure well meaning goodness on both parts. Unfortunately, both Lisa AND Scott are trying to protect us all from making medical mistakes that can be life altering. At the same time, neither can be sure that their stance is absolutely the RIGHT one, as the research has not completely come to bear an answer as yet.
Lisa is convinced that Lyme is the culprit for many of our problems, and I understand that frame of reference. If you spend enough time researching Lyme you can find yourself becoming very paranoid about the disease and its carrying vectors (ticks). At the same time, the symptoms and problems associated with Lyme can be so vague that they can just as easily be explained by very real diagnoses such as migraine, multple sclerosis, mono-nucleosis, rheumatoid arthritis and others–not to mention the less well understood and often pushed aside diagnoses of chronic fatigue syndrome and fibromyalgia. Lyme is real, but evasive, and it is not always the reason for feeling dizzy or migrainous–though sometimes it very well IS the reason.
Scott, on the other hand, has quite a lot of experience and research supporting the existence of and treatment for VM, though this disorder was only recently recognized as “real” by the overarching medical communities that we now look to for treatments. VM was very recently as voodoo as is currently Lyme, chronic fatigue and fibromyalgia today. The greatest difference at the moment is the controversy over long term antibiotic use and its possible harm versus benefit to overarching human populations–the one receiving the treatment as well as the general population who can be infected by rapidly evolving bacterial populations adapting to the onslaught of constant antibiotic presence in their environment. Treating all VM as though it were possibly Lyme can be detrimental in many ways, dangerous to many, not just the one being treated–and if the disease at the heart of the issue is neurological in nature, the antibiotic treatments will achieve nothing beneficial beyond possible placebo effects in early treatment and could actually cause harm.
Both of these people want to help, and I appreciate their desire to do so. Here is where things get contentious–only doctors–whether they know the answers for sure or not–only doctors, who have the scientific and qualitative data regarding YOUR case in front of them have the ability, along with your input and guidance, to determine your diagnosis and treatment. We are all online–often thousands of miles away from one another, determining our opinions based off of biased, typed snippets of information shared in short spurts on this forum. Under no circumstance can a person tell you that what you are experiencing is definitively Lyme disease or definitively VM or definitvely anything else based on the information we share here. What we CAN do is offer our own experiences–and what I always liked about this forum is that it shared RESEARCH BASED INFORMATION from which we could all compare our physical experiences and share with our doctors/treatment providers. Personal biases, feelings and emotional toil aside, these RESEARCH based and EXPERT inputs provide information from which we can base our OWN thoughts and ideas and share them with our care providers. From there–Thank God, we have each other to comiserate on our personal experiences and weirdness–because Lord knows–this thing–Lyme, VM, MS, or whatever you’ve got–can be WEIRD.
When we are sick, we obsess over ourselves and our illness–and we see our own issues in everyone else. I believe that Lisa feels that her breakthrough is the answer for many because it has been her guiding light as late, and she eats, sleeps, breathes and spends all of her time surrounded by Lyme information. The one thing that frightens me about the Lyme issue is that, even when ALL evidence indicates that you don’t have Lyme (and I mean ALL)–there are many resources that will tell you that you do ANYWAY and that you simply cannot move on to other possibilities because it’s most likely Lyme and there’s just no way to find or fix it. That is possible–but with VM, it is also quite possible that you actually are not suffering from Lyme, but from migraine–and that there IS a treatment for you–and that holding on to the idea that Lyme is the ONLY possible answer will prevent you from ever moving forward and getting well. I think that it is possible that this has been Scott’s concern for us as well. It isn’t that he is “against Lyme” or the idea that Lyme exists, but is afraid that if everyone closes their eyes to the possibility that it could be migraine that they close their eyes to a very good chance of successful treatment over time.
And, Scott–please know that if I have spoken for you and have done so incorrectly, I apologize (you as well Lisa).
If there were an actual area for Lyme–and people could go there of their own free will and not be “culled” and/or recruited–and if the area were filled with information that illustrated research based details helpful to those who may be experiencing neurological symptoms of lyme–I think it would be a service. But it is difficult–as there are a lot of cultish based “research” beds out there as well. Research for Lyme needs to come from sources that are agreed upon by experts in the field–as have those that have been reviewed and agreed for the VM site.
In my humble opinion–these do not reflect the opinions of anyone but myself–please do not think of this as anything but that…