questions about lyme's --- not diagnosed

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Regular Member

Date Joined Dec 2008
Total Posts : 129
   Posted 12/2/2008 8:08 PM (GMT -6)   
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.

Regular Member

Date Joined Dec 2008
Total Posts : 20
   Posted 12/2/2008 10:02 PM (GMT -6)   
Hi Gracietiger,
Welcome to the forum.  I am new here too but was a "lurker" for awhile too and also on NDRF and Dinet and your name looked familiar and wanted to say hello.  I think there is alot of overlap in Lyme and Dysautnomia and while the are likely separate and distinct "syndromes" I believe (and one of my LLMDs believes) that Dysautonomia can be caused be neurological TBDs. Not saying all Dysautnomia is caused by TBDs - but it certainly can be caused by Lyme among other neurdegenative diseases (and autoimmune causes).  As you have lurked you have seen that lyme testing is inconclusive and its a clinical diagnosis mainly.  I would certinaly suggest you see an LLMD - of course there is a wide variety of ILADS/LLMDs and you need to go to one you are comfortable with.
Also, while you might not have picked up lyme in Africa you easily could have picked it up previously in MD or anywhere for that matter - 60% plus people don't remember a tick bite.  Also, I am sure you were likely exposed to other pathogens in Africa.  Lyme is one of many TBD or other pathogens that may be affecting you (or again maybe not).
Unfortunately I have to run but will try and write more tomorrow.  Others here I am sure will share their thoughts.
BTW - I am in the DC metro area and have been to see a couple great LLMDs that you might want to consider.  I have had many of the same symptoms as you and am a young person as well (and POTS diagnosis).   One has a powerpoint on his site re: lyme and dysautonomia I will try to link to tomorrow.

Regular Member

Date Joined Oct 2008
Total Posts : 163
   Posted 12/2/2008 10:13 PM (GMT -6)   
I also have the symptoms of POTS, though not all.

Staris- I would love to see that powerpoint!

Regular Member

Date Joined Dec 2008
Total Posts : 129
   Posted 12/2/2008 10:19 PM (GMT -6)   
thanks guys!

hi staris ---- so do you have lyme disease? and may i ask, what is a tbd??? i'm sure i should know, but brain fog and all... well you know what i mean... :)
so do you have lyme's and also dysautonomia? did you think you had a dysautonomia then were diagnosed with lyme? were you diagnosed clinically for lymes?
it is a very confusing disease! along with dysautonomia. it's hard to know what is what. i would agree with my dysautonomia diagnosis, if only it weren't for the swollen joints and swollen lymph nodes that fluctuate in size nearly every day. some hours i can't feel them at all, some hours they feel huge. when i post about this on any of the dysautonomia forums, it doesn't really seem that others have experienced this.

i am wondering if it is possible for someone to "carry" lyme's, and then not have symptoms for awhile? would it have been possible for me to have had it for like a year, seem completely healthy, and then bam! one day all the symptoms started to manifest?
everything came on so quickly, i am confused about a "trigger." it seems that with POTS, i should be able to identify some kind of trigger - stress, a virus, etc. but i just can't identify anything.

does anyone remember a nervous system disorder being their first symptom???

thanks, staris! your information was very helpful.

Regular Member

Date Joined Dec 2008
Total Posts : 20
   Posted 12/3/2008 1:17 PM (GMT -6)   


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.



Regular Member

Date Joined Dec 2008
Total Posts : 129
   Posted 12/3/2008 2:03 PM (GMT -6)   
Staris -
Thank you SO incredibly for your very thorough response. We are on the same page.
I am most interested in finding a cause for my dysautonomia. I feel like I keep hitting a brick wall, however, which is what brought me to the lyme site. It seems like, even though the dysautonomias are so little understood, they still produce fairly "common" symptoms. My diagnosis of POTS, for example, produces the rapid heart rate upon standing. I do not very often have that. My tilt table test showed no inappropriate rise in heart rate. I have also found, from the dysautonomia forums, that some of my symptoms seem very rare for dysautonomia - joint swelling, etc.
I think that my onset of symptoms was somewhat gradual (over the course of a month or two), but the first set of them was very sudden. Aside from having just returned from Africa (which could indicate an infectious disease, toxin overload, maybe), the only other change in my life was being on birth control pill. I at first attributed all my symptoms to the pill, but after so much research into it, I just can't seem to find any correlation between the pill and an autonomic dysfunction.
I am living in California now, which will make finding a lyme literate doctor very difficult, I think. But I will pursue it. I did spend a month and a half prior to leaving for Africa in Maryland, and then I lived there when I had returned from Africa. I am very outdoorsy, and remember collecting tons of ticks from my neighborhood. It is hard for me to imagine having Lyme's and then it being dormant for several months and then suddenly surfacing, but I suppose it's possible. It's also hard to imagine that my initial indications that something was wrong with me (an overactive sympathetic response) was also the beginning of Lyme's. I would expect to have seen more of the typical initial symptoms - fever, joint pain, etc. However, I was bitten by a tick in Africa once that I know of, and was sick afterwards. Lyme's disease was found in the country where I lived, though I am not sure it is the same. But I suppose it is possible.
Anyways, thanks so much for listening. Doctors keep trying to medicate me for each one of my problems, but don't look at the whole picture in an attempt to figure out what the underlying cause of this mess is. People don't go from a perfectly healthy very athletic twenty something to having all kinds of physical ailments without a cause.

I am curious about one thing. At the time that it would have been very possible for me to contract Lyme's disease, I was on 100mg of doxy a day. My doctor did acknowledge that this would not have been enough to stop a Lyme infection. I have read, however, that people who became infected with Lyme's while on antibiotics might forever test negative. Do you know anything about this???

Thank you so so so so much for all your help!

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 12/3/2008 4:47 PM (GMT -6)   
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.
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