autonomic dysfunction as FIRST symptoms?

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.

Gracietiger,

about 25 years ago I had sudden drops in BP, along with low body temp, head pain/pressure that was my first symptoms.  The doctors would just ignore the drop in BP thing, the low body temp was "from working the night shift 11-7", and the head pain/pressure was "migraines".  It wasn't until I saw Dr. C. in Tampa that he pointed out that that was probably the start of my LD.  I went on to experience Joint pain in my hip then my neck and back pain.  So I would say yes it could be LD, I believe that was how mine started.

KO 

Hi gracietiger -

Its good to hear that your docs are trying to help you and are developing theories about your illness.

I somehow love Razzle`s idea of treating bacteria and virus together. Maybe this is b/c I am in such a boat with lyme and west nile. If some of the docs favour the virus theory - is there something special they think of b/c some of the virus do not seem to respond to antiviral meds that much at all. But nevertheless it is worth a try.

Another interesting thing is this: I was talking to an ornithologist who is involved in a study about migratory birds and climate change; we quickly started talking about Lyme and co and he said it sounds kind of funny to him to speak about "local" strains b/c the birds bring the bacteria easily to the southern hemisphere when they fly down to spend the winters there and nobody knows what they bring back when they got bitten there. So at least some in the ornithological community think that there is kind of exchance of patogenes possible. Honestly, when I heard that, I had to think of your test with the two bands. May be you got european strains from Africa?? Hey - in the meanwhile I think nearly everythink is possible!!!

Hope you get answers soon, and that you get better quickly! Kind greetings, dorit

GracieTiger-

I was just diagnosed with Lyme Disease and co-infections. My very first symptoms started in 2003 and they were panic attacks and anxiety. The panic attacks were terrible. Even while on medication to control them, I still had them. I also had heightened smell and sound sensitivity. My doctor believes these symptoms are from Lyme. I was fine one day....never sick besides the ocassional cold/flu....then that morning I'm on the ER thinking I am going to die. I had very bad flushing on my face and arms right before a panic attack.

To Everyone: Wow! I didn't mean for my symptom and med list to be so long!! Sorry guys. I tried shortening it and if it's still not short enough, I will cut something else out.

GracieTiger,

Yes, I still have the flushing every now and then. Not nearly as bad though and they are only followed by anxiety instead of a full blown panic attack.

When I first started having panic attacks, they lasted most of the day. The flushing was all day too. I had to take medication to calm them down. I didn't get the burning or up and down body temperature. Although, I already have low body temperature from having Thyroid problems
and I run fever every few weeks.

I also had tremors, G.I. Problems, shortness of breath and fast heartbeat (tachycardia). That's how it all started for me. Now I have muscle/joint pain, floaters, rib pain, still have tachycardia now and then, stiff fingers, neck and back pain/stiffness, lymph node swelling, low grade fevers, palpitations....I have more but that's all I can think of right now because I'm hurting in those areas again.

In my opinion, the bacteria can come to rest anywhere in your body and I think that wherever they invade is
where our symptoms will be.

gracetiger:

Your story sounds similar to mine. In 2000 I had a fever and some flu-like symptoms and then wasn't sick again until 2003, when the autonomic dysfunction started. What an uphill battle that was, getting a doctor to diagnose dysautonomia then! It's so well known now, I wish to hell that's all my problem was! I was getting heart palpitations, migrane variant with flashing lights, BP drop, and I had a valve prolapse. It wasn't until two months ago that I was dxed with Lyme and I have had it since that first symptom in 2000. The facial flushing started in 2007 and I gained weight also - about 70 lbs in 2 years but apparently my thyroid is supposedly fine. Now in the midst of hardcore neurological symptoms and trying to get through my first 28 day rocephin treatment...I am so overwhelmed with the information about co-infections, all of that...I don't know what to do. I don't know how much my doctor knows about this disease but I don't think it's much. Anyway, good luck, and a little tip...authorities saying "Lyme isn't in this area" doesn't mean squat. You need to make sure you get every test you can for Lyme.
__________________________

www.b-lyme-ied.blogspot.com - a blog about Lyme Disease
Read about what my 28 day treatment is like via updates on Twitter http://twitter.com/b_lyme_ied

My very first symptoms was drop in blood pressure and thought I had POTS. Saw a neuro for about 5 months to up my blood pressure and my autonomic system on the vtal machine indicated that my nervous system was completely out of control. After the five months, i had the full blown joint, fatigue, muscle pain, neck stiffness.


I tested positive for Babesia Duncani, yet negative for lyme. I am finally getting treated.

Hi gracie:

I presented almost exactly as you did, except no panic attacks. Flushing, burning, tach/pals for three months (folwwed a stint on ABX after a sinus infection) then the flushing became major, all tracking the time period you suggest. Then the joint swelling, nodules, arthritis, then extreme headaches/pressure. In terms of dysautonomia, I also had blood pressure dysfunction (very low) light headed-ness, low body temp, lack of body sweat, etc.)

Eventually I had CNS nervous system dysfunction (twitching, cramps, nerve pain, lack of memory, rage, proprioception dysfunction, vision, GI, you name it, etc.)

My initial half dozen or so Lyme ELISA tests were negative. After I went to an LLMD who suspected Lyme and co, even then I had a negative IGENEX WB. It was only until I had 3 months or so of DOxy in me that I got a positive WB. And boy was it positive! It took the bx to help my immune system to produce antibodies.


Hope this helps. feel free to contact me if you want.

JOhn

Gracie,
I can be reached at jrwoznicki at yahoo dot com

:)