questions about lyme's --- not diagnosed

hi all, i have been lurking on the board here and there. i know that you have a lot of people asking "could this be lyme's" and i don't mean to be one of those people, but i am looking for some feedback.
i am a 25 year old female, and began experiencing all kinds of unusual symptoms about two years ago. at the time, i had just returned after living in rural west africa for about six months. prior to the onset of these symptoms, i had never had a single health issue at all. i was a division 1 ncaa athlete, extremely active, confident and adventerous.
about two weeks after returning to america - maryland - i suddenly started noticing weird changes. the first thing i noticed as an overactive sympathetic nervous system response. out of nowhere, i would become flushed, my heart would start racing, and i would feel a lot of anxiety. likely panic attacks. this began happening often in social situations, perhaps because of the stimulation or excitement that i seemed really sensitive to, or because i was really embarrassed about the sudden onset of this facial flushing.
over the course of a few months, i developed intense tachycardia, shortness of breath/chest tightness, major facial flushing (which i have NO history of), panic attacks (intense!), arrythmias, low body temperature, swollen finger joints, cold intolerance, GI issues, swollen lymph glands, vision problems, and a whole host of other issues.
eventually, i was diagnosed with postural orthostatic tachycardia syndrome, a form of autonomic nervous system dysfunction. POTS is diagnosed by a tilt table test, which shows a 30+ bpm heart rate increase upon a change in position from lying down to standing. however, during my tilt table test, i did not have this great of an increase in heart rate. i had a very unusual heart arrythmia, which led my cardiologist to diagnose me with POTS because quote "it is the most common dysautonomia."
i have since been bugged by the fact that my diagnosis was given because "it is the most common type." just because it is the most common does not mean that is what i have going on.
i am particularly questioning the diagnosis because pots does not typically cause swollen lymph nodes or swollen joints. the swelling in my joints occurred only in my fingers, for a period of about four months. my fingers got really curled inward, and i had these very very very painful nodules develop on a couple of them. sometimes they continue to feel very tight and sore, but not like before. i have had some joint pain in my hips, but not in my knees, which i have read to be the most telling sign of lyme's.
anyways, i am babbling because i am just exhausted of not having answers. none of my doctors understand my current diagnosis, and i can't even get an adequate explanation as to why i have a diagnosis when i did not have the main criteria in which it is even named after.
i have always wondered about lyme's because of the fact that i went from perfectly healthy and great to pretty quickly sick, after being in a lyme infested area of maryland. however, i do not remember having a fever or anything like that. my first indication something was wrong was an overactive nervous system. is this unusual? could this rule it out? do you guys all remember your first symptoms?
i am pretty sure lyme's disease existed in the country in africa where i lived, though i do not know if it is the same kind that we find here. i did have a fever, flu like illness for a couple days there, not long after having a tick embedded in me. though, like i said, not sure if their lyme's produces symptoms like ours.
i tested for lyme's twice, i think through an elisa (?), and had negative results. however, i have read that people on antibiotics at the time of infection could test negative? i was on low dose doxy as an antimalarial. i am not sure if a low dose would stop the lyme's in its tracks, or if it was too low a dose to stop it if i was infected?

so sorry this is so long. for anyone who managed to read all this, i would appreciate any feedback. i spend a great deal of time and energy and resources to handle the condition i have now, so only want to pursue seeing a llmd if it seems absolutely like a reasonable thing to do.

I also have the symptoms of POTS, though not all.

Staris- I would love to see that powerpoint!

  Lots here - but bear with me.   TBD = Tick Borne Diseases - sorry.  This include Lyme, Babesia, Bartonella, Bartonella Like Organisms, Ehrlichiosis, Mycoplasma etc.   I believe that Dysautonomia (whether secondary or primary) and in fact all neurodegenerative diseases of unknown etiology are the result of one of a handful of actual causes.  I also believe that multi-system Dysautonomia is central in origin and a degenerative process as well.  Probable causes (in no particular order):   - Infectious Disease (Bacterial (including Lyme/TBD), viral (e.g. Stanford study on effectiveness of Valtrex on Chronic Fatgue patients), etc.) - Autoimmune (which can be caused in a couple ways) - Genetic/Hereditary (no proven link in most idiopathic cases) - Cell/Mitochondrial Dysfunction/Death Theory (which is gaining some momentum) - Environmental (toxins, severe allergy leading to autoimmune, etc.)   So my thought is rule out what you can and try and treat the ones you can (e.g. Infectious disease = antibiotics or anti-retro virals).   Unfortunately some causes may not be treatable for various reasons.   I don’t believe everyone with Parkinson’s has Lyme but there is something causing the problems and it very well is likely one of the above and I think that Infectious Disease or an autoimmune response can cause it.   Thus, the theory re: Lyme and Dysautonomia is that neuroborreliosis or anther pathogen that has penetrated the blood brain barrier is infecting the brain and killing/harming brain cells and/or cell communication -   the result of which can be brain degeneration, atrophy, lesions, and ineffective synpase communication.   Depending on the part of the brain that has the largest pathogen load (in that theory), the clinical symptoms may focus more in a presentation with dysautonomia, parkinsonism, cognitive impairment, sensory impairment, etc. or of course a combination.   Personally,    I stumbled across my first LLMD and went to him as primary care with no knowledge he was a LLMD (he took insurance at the time).   It was his thought to look into lyme as a cause of some problems I complained of.   I initially was diagnosed with Lyme clinically but with some highly suggestive test results (multiple positive and indicative bands).   Testing at an additional lab more recently (not IGenex) showed CDC positive WB and thus confirmation of clinical diagnosis.   In between, I was diagnosis by my LLMD as having Dysautonomia and POTS likely caused by Lyme after some of the symptoms you list and autonomic nervous system testing.     As for your trigger question.   Again, it depends on the theory you ascribe to what the underlying cause is.   Most people suggest that there can be latent lyme which is exacerbated by a shock to the body (flu, accident, stress, etc.).   Thus you body’s immune system fights it and you are not symptomatic but the trigger will cause an imbalance and your body can’t handle the fight on its own.   But it also could be likely your trigger was an unknown tick bite (MD is endemic) or exposure to another pathogen in Africa).   I wouldn’t take too much stock in trying to pinpoint it - it would answer some question but not many.   If your onset was full on all acute at the same time - then this would point to an acute trigger - possibly infectious.   If it was more gradual - a new symptom every couple weeks/month - then it may be the former theory.   I believe that you should look for the “cause” of you Dysautonomia.   Most doctors who specialize in the autonomic nervous system (I know a good Dr. in Baltimore if you haven’t found a specialist) will treat symptomatically hoping the underlying cause resolves itself.   In some cases it may but it can often progress leading to further symptomatic treatment.   Going to a LLMD will help you explore if Lyme and company may be the underlying cause (it may not be).   But if it is and you can get effective treatment (another if with Lyme - some people have great/full improvement, others do not even with aggressive treatment), then underlying Dysautomia symptoms may resolve.   It’s a possible answer that is worth pursuing.   These are just my thoughts - not that of   Dr. - take them for what they are worth.   But I would recommend you see one. Lastly - here is the presentation.  It was actually one he made at the recent ILADS conference.  I believe its in the public part of his website so there shouldn't be an issue with sharing. http://secure.intmednova.com/Portal/Lyme+Disease-the+Literature/FileFetcher.aspx?fileid=c25111fa-5a18-4710-91a4-7a7f9df46fdb

Hi gracietiger,
Lyme often goes dormant which is what makes it so hard to diagnose. You can be very sick for a month, then feel fine for a couple of months (or longer) only to get very sick again with something that seems completely unrelated. I saw a video of a woman confined to a wheel chair because of undiagnosed lyme when she was child. After exhausting every possible reason for her sickness, she suddenly recovered but relapsed again 15 years later at which time she tested positive for lyme.
You might ask for a CD57 test. Someone else can be more specific about exactly what it tests - I believe it is related to the antigens produced by lyme, and only lyme, so if your results are low, you have the disease. It is cheap - about $100.

I would also contact someone in Africa where you were living to see what other diseases you may have picked up while living there.