Does anyone know any Drs in Boston (or the general area) who will test for Lyme and have seen patients with seeming MAV who have had Lyme?
what do you mean “thoroughly test” for Lyme? your GP can just order a blood test for Lyme disease titers and you should be good to go
I think it goes without saying “Lyme Disease” as an explanation for a MAV-like constellation of symptoms is fairly controversial.
“Controversial” is the best and most delicate way to put it
I definitely agree, but I’ve seen people on here with similar symptoms who had gotten treatment for lyme disease and recovered so I feel like it’s worth a shot to just get tested.
I think you also have to consider that most sufferers stabilise and get better spontaneously … but sure … explore what you need to … just don’t do anything that isn’t conservative!
the only thing that can happen if you get “diagnosed” with chronic Lyme is getting put on long-term or IV antibiotics that you don’t actually need and haven’t been proven to give any benefit to patients in long-term clinical trials.
many antibiotics can make vestibular symptoms worse too…it just isn’t a road i would go down. the risk/reward balance isn’t there
Isn’t there no data from clinical trials that all the ‘migraine’ medications VM patients are given also significantly help? Please correct me if I’m wrong I just can’t find the data. I understand your guys’s points though and I have the same concerns.
a lot of the literature for using migraine medication in VM is from retrospective analysis, meaning that the researchers are retroactively looking at outcomes from patients prescribed these medications in clinical management. there are very few randomized clinical trials for VM.
why is this the case? clinical trials are expensive and have to be funded by a major pharma sponsor – repurposed drugs will not make pharma companies any money so its really not worth funding a full fledged randomized clinical trial. also, retrospective analysis are still valuable for a patient-oriented perspective. if patients report significant improvement in their symptoms after being prescribed these medications then thats almost as good as a clinical trial but not quite.
the difference is that there has been clinical trials for the treatment of the syndrome otherwise known as “chronic lyme” and there was no benefit found for the patients that were put on long-term antibiotics. in addition “chronic lyme” is not really an accepted disease because the symptomatology is too non-specific. pretty much everyone alive on this earth has had symptoms of chronic lyme disease: fatigue, random pains, brain fog, etc – these are common symptoms and dont point specifically towards any one diagnosis so its not useful and can actually be harmful to patients to assign this diagnosis, hence why the medical community does not do it.
edit: have – excuse my poor American grammar
I struggle to conceive of a chronic infection that the body can’t naturally resolve. Infections are invariably acute no?
unless you’re immunocompromised but you’d have bigger more evident issues if that were the case
thank you, that makes a lot of sense.