autonomic dysfunction

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gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/16/2009 8:16 PM (GMT -6)   
i am wondering how many people developed autonomic nervous system dysfunction from lyme's? i have read that it can happen on the internet, but haven't heard it discussed much. have any of you been specifically told or diagnosed with autonomic dysfunction? also, has anyone else had that be their first manifestation something was wrong?
ANS dysfunction was my first symptom (s). facial flushing, panic attacks and crazy heart rates. i was diagnosed with POTS and told it was clearly and obviously a problem with my ANS. which is all true. i undoubtedly have a whacked out autonomic system.
however, when my lymph nodes started swelling really big, and then my finger joints got really large and developed nodules on them, it was clearly something more than an autonomic dysfunction. that's where my diagnosis went from POTS to "POTS-like." i didn't fit the picture anymore.
yet, like i said, my symptoms are MAINLY from an autonomic dysfunction problem. and i am not sure if that would unusual in lyme's/co-infection. however, i have other symptoms that just don't fit the picture so doctors keep telling me it's from some virus or infection. i have been tested for all herpes, mycoplasma, epstein barr, all that good stuff and still don't know what virus or infection the doctors are referring to!!!

i know i need to see a llmd and i know i keep asking these kinds of questions, but i am curious to see how commonly other people have experienced the same kind of symptoms or onset that i have. if there is one thing i have learned about chronic illnesses, it is that the onset of the illness can often be the key to solving the picture, which is often overlooked. i can't help but feel like the onset of my illness is so different from the one that i read about with lyme's.
i feel, however, that a llmd would tell me that lyme's is a possiblity and try to treat me. i have like 80% of the symptoms, if not more. i just don't want to end up spending a lot of time trying to treat lyme's if it's really unlikely that it's what i have. my doctor is wanting to trial me on antivirals to see if they help. so i feel just as torn about that. if antibiotics or antivirals require me to wait six, seven, more months to see a result and know if they will work, then that's a long time that i won't be pursuing other possibilities/treatments.

know what i mean? i don't want to squeeze into a box if i don't fit.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 3/17/2009 11:26 AM (GMT -6)   
GT: I just read your whole post and something you wrote caught my attention. You mentioned the "nodules on your fingerjoints" Google dermatomyositis and see what you think about it. The symptoms are very close to Lyme but I even found a picture of the nodules on the fingers. See what you think, its very possible you could have that. D

judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 3/17/2009 4:18 PM (GMT -6)   

HI Gracietiger,

I feel along with your difficulties but would like to let you know things get better, I had arrithmia, orthostatic hypotension, palpations, fluctuating blood pressure, which are autonomic nervous issues, they all got better with treatment, I did have a relapse and symtoms came back but I had a hyperactive thyroid which may have caused the relapse, are you on meds?


beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 3/17/2009 5:26 PM (GMT -6)   
Me-I was bit by a tick and 3 months later-wham-developed POTS so bad, I couldn't walk 10 feet. It's pretty much gone now!

LF1980
Regular Member


Date Joined Jul 2008
Total Posts : 78
   Posted 3/17/2009 6:48 PM (GMT -6)   

I was first diagnosed with a autonomic nervous system dysfunction virus. Only got worse and was finally diagnosed with lyme and bartonella. It sounds like you may have both tick borne infections as well. If you need a doctor recommendation please let me know.

best of luck, L


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/17/2009 7:34 PM (GMT -6)   
wow, it seems like others are in very similar boats! which is exciting because i don't feel so alone. i too am diagnosed with an autonomic dysfunction virus, but the question is, what virus? no one can figure that out!!

i was bit by a tick while living in rural africa, and i did become sick suddenly about two weeks after that. i of course at the time didn't attribute it to the tick at all. it was about three months later, and two weeks after i returned to america, that wham!, i developed this POTS-CFS-like syndrome, as they call it. i was also living in maryland at the time and spending a lot of time outdoors.
i know that bartonella is in the area of africa where i lived, but they have a tick-relapsing fever, not lyme's disease. or at least that's what they know of. i don't really have symptoms of that tick-relapsing fever. like the fever. so i thought that perhaps i had gotten bit in maryland, which i suppose is still a possibility.

dowa, thanks for the suggestion of the dermatomysositis. i have read a little on it, and need to read more, but i am wondering if this couldn't be a possibility. the only thing is that the joint swelling i experienced was only in my hands, as were the little nodules. i developed a nodule on two, maybe three, fingers. this lasted over the course of, oh, probably three months, and then spontaneously went away. this all occurred about six months after i had been sick and it hasn't come back since. i haven't found any information about dermatomyositis being progressive, or if it can spontaneously disappear.
i am also interested in it because my first symptom was facial flushing, which i have NEVER had before. and i'm talking really really really intense facial flushing. i read that dermatomyositis can cause the malar rash, similar to that of lupus, and many sufferers are initially diagnosed with rosacea. i actually insisted to my doctors, including a dermatologist, that i must have rosacea because of the intensity of my flushing and the legnth of time it lasted (ten hours sometimes), but every doctor has insisted it's not rosacea and it's a result of my autonomic dysfunction. but now i wonder...
i will have to look more into this. i'm just wondering however if because i no longer have the joint swelling and nodules, then i wouldn't test positive for it. i suppose i am more interested in the causes of it anyway. i have read in a very thorough publication that the three main causes are 1. autoimmune (which i have had thoroughly ruled out) 2. cancer (don't think so) and 3. viruses or bacteria, most commonly, lyme's.....

does anyone else have this? has anyone else developed the nodules??? mine were small, red nodules on my finger joints that hurt like heck!

anyways, thanks everyone so much for sharing. i am so glad to hear i am not the only one with the autonomic dysfunction. that definitely causes the worst of my symptoms!

LF1980
Regular Member


Date Joined Jul 2008
Total Posts : 78
   Posted 3/17/2009 8:05 PM (GMT -6)   
you might want to speak to my doctor - she is south african but now lives in NJ.

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/17/2009 9:28 PM (GMT -6)   
hi lf, unfortunately, i am based in california... quite a ways away from NJ! but thank you so much for offering your help

beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 3/18/2009 6:29 AM (GMT -6)   

I live in Maryland-my LLMD thinks bartonella is worse here, and probbably caused my POTS.

It is almost GONE with treatment.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 3/18/2009 10:22 AM (GMT -6)   
Hi All,
I used to have sudden drops in BP in the early 80's that the doctor thinks was when I was infected.  I also had unexplained hip joint pain, neck stiffness, weight gain 20lbs, migraine like headache, stomach issues, palps.  The doctors never seemed concerned about the drops in BP, I run low to begin with 90/60 so when I would drop to 70/48 they never seemed to care.  I guess if it doesn't happen in front of them they aren't concerned, or they think you're just stupid or making it all up.   I was just diagnosed a few years ago.
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 

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