i am wondering if this is a very unusual presentation?
i am caught in a debate between doctors who want to treat for lyme's and want to treat a virus. i haven't tested positive for either. i have clear autonomic dysfunction, but i did not test positive for POTS, the most common and likely form of dysautonomia, though i have most of the symptoms. i also, about three or four months after getting sick, developed very swollen finger joints with these subcutaneous nodules on them. this lasted for about three months then went away. this is very atypical for a primary autonomic dysfunction disorder.
so all my docs agree that there is some kind of virus or infection underlying. my infectious disease doc, a very famous and wonderful CFS specialist, believes that i have a virus. i did live in africa for seven months before getting sick. i started noticing something off about two weeks after returning. but it has been two years since then, and if i had gotten one of the more serious african viruses or such, i would definitely know by now.
i have tested negative for epstein barr, all herpes viruses, mycoplasma and many others. all the ones that are seen in people with chronic fatigue and such. and i tested like way negative. my antibodies were not high. yet, the doctors still want me to take antivirals because they are so sure that this autonomic dysfunction did not just come out of nowhere. i have no history of anything being even a little off AT ALL. i have been a very serious athlete my whole life and a world traveler, so it seems if i had had a predisposition to dysautonomia, it would have been triggered.
i tested igenex and found a positive on 41 and indeterminate on 31. this is pretty weak, to say the least. there are not many grounds to think i have lyme's except for the fact that i have an undiagnosed mystery disease and i am only 25. i was living in maryland when i returned from africa and spending a lot of time outdoors, but like i said, i first started noticing something was off about two or three weeks after returning from africa. i also know that i got bit by a tick in africa, but i do not know that lyme's disease is there, and there really isn't any literature to suggest that it is. it seems my chances of it being lyme's from africa is REALLY low, unless it's actually quite prevalent there and just no one knows (seems unlikely).
so, i know i have posted my story and history here before, and everyone tells me i need to see a llmd, which is SO true, but i think i'm looking for me upfrontness about symptomology. i know i can be treated as if i have lyme's. i have a doctor willing to do that. but i also can be treated as if i have a virus, which my team of docs at stanford all seem to think is the case. like i said, i really have no positives for any of that. i just have this sudden onset of autonomic dysfunction, that isn't pots, so no one knows where it came from, and i had this arthritis and swollen lymph glands. but i have tested negative for the chronic viruses, and i have no fever, nor have, to suggest i had something from africa, like malara, west nile, etc etc.
that is why i am wondering if autonomic nervous system dysfunction is a typical initial presentation. my first symptom in this whole ordeal was this sudden feeling of flushing, hot flashes, and panic. not a panic attack, that came later, this lasted for only a minute or two. then came full blown panic attacks about a month later. followed with out of nowhere tachycardia, palpitations, anxiety, shortness of breath. and then the facial flushing became major facial flushing. lasting like ten hours and burning. i have no history of blushing/flushing at all. or any of the above actually. i had never experienced anxiety, and i was a serious athlete, so heart arrythmias and very very rapid heart rates (over 220 with minimal exertion) were not NORMAL.
this all developed over the course of about two or three months. and then it was at about the third or fourth month that the sudden joint swelling and painful nodules developed.
it was about eight months into all this that extreme head pressure developed. and i mean extreme. bed ridden head pressure. and it was like a year and a half before the neck stiffness and creaking came on.
i feel like this is backwards to a typical lyme presentation. i almost always read of the neck stiffness, headache/pressure, and arthritis coming first. then, LATER, quite a bit later, come the heart problems and other autonomic dysfunction issues (mine include low body temperature, ucnontrolled body temp, GI issues, flushing, panic, tremors, vision problems, and i could go on forever).
i'm sorry this is so long. i just don't know whether i should really pursue these antivirals or antibiotics (can't do both at the same time). they both require a long term use, and i just don't want to waste time on one if i should be on the other. so i'm really weighing the likelihood of the possibility of lyme versus virus. based on my symptoms, since i have no tests to rely on.
thank you all so much, whoever read this whole thing. i appreciate you guys and your assistance sooo incredibly much.