autonomic dysfunction as FIRST symptoms?

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gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 4/21/2009 7:10 PM (GMT -6)   
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.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 4/21/2009 11:32 PM (GMT -6)   
My first symptom was wandering leg pains - nerve-related pain more similar to sciatica than arthritis. The arthritis for me came years later, and has been very mild compared to most cases.

From researching Lyme, I've learned that the reality of Lyme is that it is anything but typical in any particular patient. Doctors and researchers alike seem to favor "typical" symptom lists/progressions/descriptions to simplify things and to make sure they are all talking about the same disease. However, reality is often quite different - in a lot of chronic diseases not just Lyme. Because the bacteria that causes Lyme has so many various tactics for hiding in the body and evading the immune system, it is entirely possible for the bug to cause bizarre symptoms as initial presenting symptoms (and there are case reports of Lyme patients that seem to support the idea that initial presenting symptoms can be quite unusual).

This is the long way of saying that your symptoms could very well be from Lyme. But don't rule out the possibility of a co-infection with a virus despite negative tests - those could be false negatives, or you have a virus that has not been or can't be tested for yet...

Have you asked the LLMD what s/he thinks of the virus theory in your case?
Have you asked the other doctors what they think of the Lyme theory in your case?
Is it possible for you to be treated for both Lyme and a virus simultaneously?

Just some things to think about... Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Ceftazidime (for Pleural Effusion), Claritin, Colloidal Silver (used topically), probiotics.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 4/22/2009 10:31 AM (GMT -6)   
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 
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 4/22/2009 10:39 AM (GMT -6)   
I would bet it is lyme and co-infection or 2. Get some treatment form a LLMD and wait a month and see if you have any improvement. The symptoms sound very familliar, you were bit by a tick and lyme is EVERYWHERE.

DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 4/22/2009 6:11 PM (GMT -6)   
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
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 4/22/2009 9:20 PM (GMT -6)   
thanks guys!!!!
i still feel so unsure, but i know there is no straightforward answers when it comes to chronic, mysterious illnesses. i am not really willing to treat both a virus and bacteria at the same time, because if i started to improve, i would not know what was helping. and antivirals are not exactly drugs that i want to keep taking for a long run. i think i am going to trial them first and see what happens. then the antibiotics. i'm pretty leery of taking anything for a long time, but at this point, am also pretty desparate to try something.

interesting about the ornithologist! i don't doubt that there are ways for the lyme to spread. a study was conducted not far from my village in senegal that found many of the ticks were infected with borrelia. however, they carried a tick relapsing fever, which greatly resembled malaria. i had a fever for like two days the whole time i was in africa, so i'm quite sure i don't have a tick relapsing fever. but if the ticks there can carry a borrelia illness, why couldn't they also carry our "version" of lyme?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/22/2009 11:12 PM (GMT -6)   
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.
Symptoms started in 2003 with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder. Took Lexapro for two years and symptoms never got better. Suffered off and on for years.
2007 found an LLMD and was diagnosed with Lyme. WB was negative but had ++ on Lyme specific numbers. I decided to not do treatment because I didn't know enough.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, couldn't find the right words, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.

**Before this diagnosis, I had been to over 15 doctors. Was told I had everything from Lupus to Viral Hepatitis, Fibromyalgia, Chronic Fatigue, Arthritis.**

Illnesses:
-Chronic Lyme Disease
-Hashimotos Thyroiditis
-Ulcers
-Hypoglycemia

Medications:
-Biaxin 250mg to start (starting slow and working my way up)
-Mepron
-Ultram(muscle/joint pain)
-Thyro Complex 60mg(Thyroid)
-Probiotics
-Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

**I'm doing a detox with supplements and the yeast protocal first for about another week, then starting Biaxin and Mepron.**

-I also do foot detox and bath detox.


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 4/22/2009 11:28 PM (GMT -6)   
that's really interesting! i am so glad you are pursuing your new diagnosis and treatment. i sure hope it helps you.

when you said you experienced facial flushing before a panic attack --- do you still experience the facial flushing?? did it get worse?

mine began just as really transient flushing with a panic attack, then about two months later, progressed to be ten hours long and burning pain. i also noticed as soon as a flush came on, my body temp went from around 96 (no, not normal for me) to around 99-100 within minutes. it would stay like this for hours, and as soon as my body temp went down, so did the flushing.

weird....

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/23/2009 12:05 AM (GMT -6)   
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.
Symptoms started in 2003 with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder. Took Lexapro for two years and symptoms never got better. Suffered off and on for years.
2007 found an LLMD and was diagnosed with Lyme. WB was negative but had ++ on Lyme specific numbers. I decided to not do treatment because I didn't know enough.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, couldn't find the right words, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.

Illnesses:
-Chronic Lyme Disease
-Hashimotos Thyroiditis
-Ulcers
-Hypoglycemia

Medications:
-Biaxin 250mg to start (starting slow and working my way up)
-Mepron
-Ultram(muscle/joint pain)
-Thyro Complex 60mg(Thyroid)
-Probiotics
-Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

Post Edited (CajunGrl) : 4/23/2009 12:10:18 AM (GMT-6)


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 4/23/2009 12:28 AM (GMT -6)   
Dear gracietiger,

I am sorry you are having to face all these serious health issues. Everyone here will not be surprised about all kinds of symptoms and conditions because lyme and coinfections seem to cause/mimic just about all the possible human sufferings that exist! It is quite possible that you have multiple infections and that you will have to treat for multiple things. I know many lymers, including ourselves, that have to address multiple infections and conditions. Find yourself a great llmd and a great naturopath/ND to help you plan the best treatments you can. I think integrative/holistic medical practices give you the best of both worlds----western medicine and natural medicine.

I am glad you found this forum. People here have a lot of knowledge and are willing to share their experiences. You can always come here for info, support, or just to "sound off". Welcome and Best wishes for a return to good health.

bablymers mom

b_lyme_ied
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/23/2009 8:26 AM (GMT -6)   
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

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 4/23/2009 11:18 AM (GMT -6)   

Hi!  Wanted to share that I too had a crazy episode of 2003.  Started after I ate out.  Felt bad within an hour.  Had this attack within the next two hours that had symptoms just like food poisioning.  I couldn't stop them though and so I got quickly dehydrated.  Went to the ER,.. white blood cell count very elevated.  After I got out of the ER (took 4 days to rehydrate), I suddenly had anxiety.  It was very crazy, had never experienced it before.  It would come and go for like 3 weeks, and I couldn't believe it.  I finally went to an endocrinologist.  He put me on dexamethasone (very low dose) and it went away right away.

I know that steroids are not good in general for an infection, but I'd probably do the same thing again if that panic came on.  Pretty incapacitating.  I just wanted to share this, perhaps others with this anxiety should have their adrenal's supported. 

I recently had an endo tell me that she thinks I have dysautonomia.  What type of doctor does one go to for that?  Is it important to get that diagnosis?  I don't have the symptoms described below, per se.  Apparently my CNS is in 'high gear' and won't calm down enough during the nighttime, so that I can shift over to sleep.  I'll get things such as full body or brain twitching (sleep starts or sleep stops), severe mouth parching, also hyperreactivity to sounds.  All during the 'brink' of sleep, stopping me from entering.  Weird things have happened to me though... for instance, sometimes when I sit up, the partch goes away.  When I try the humidified oxygen concentrator, the twitches happen just in my brain/head. 

These symptoms all worsen when I treat or take anything that disrupts the balance of water in my body.

By the way, gracietiger, is there anyway that you can have an area of inflammation biopsied?  that is how we found my active parvovirus, actinomyces, mycoplasma penetrans, etc.  PCR testing is more accurate that way.

I am taking amantadine 100mg daily, along with ketakanazole (anti-fungal).  Not sure if I notice a difference.

Hope something in here helps.  I hope you have some relief soon!


Nexis
New Member


Date Joined Mar 2009
Total Posts : 15
   Posted 4/26/2009 5:14 AM (GMT -6)   
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.

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 4/26/2009 10:29 AM (GMT -6)   
wow, it sounds like so many of you guys have similar stories! my autonomic nervous system seems to be eating me alive, and i still have no answers! sounds like you guys know what i mean!

nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 4/26/2009 2:16 PM (GMT -6)   
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

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 4/26/2009 4:17 PM (GMT -6)   
hi john,
i'm trying to send you a private message but i am not sure how... would you mind helping me???

your story sounds EXACLTY like mind. i'd like to hear more. i too tested negative so i'm a little skeptical....

nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 4/26/2009 6:38 PM (GMT -6)   
Gracie,
I can be reached at jrwoznicki at yahoo dot com

:)
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