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» LymeNet Flash » Questions and Discussion » Medical Questions » How many with Lyme suffer from dysautonomia or POTS?

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Author Topic: How many with Lyme suffer from dysautonomia or POTS?
snowflake
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I have noticed that many of the symptoms I had early on sound like I had autonomic nervous system dysfunction as a result of Lyme.

I know someone right now going through the Lyme vs POTS dilemma. She thinks she is doomed for life with POTS and is considering stopping LD treatment.

How many of you with Lyme had ANS dysfunction?

1. What were / are your symptoms for dysautonomia?

2. Have they gotten better with treatment of Lyme over time?

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twoangie
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Hi there Snowflake,

I saw that you were asking if others here have dysautonomia/POTS. I do. I was originally misdiagnosed by my first cardiologist with neurocardiogenic syncope. I finally went to a chronic fatigue specialist and had a tilt table test which actually showed I have "orthostatic intolerance." However, that is POTS because I'm intolerant because I suffer from tachycardia whenever I am upright. I totally hate it and it really make life really hard.

I believe you asked if Lyme could bring it on, I believe so. I was fine and could stand through an entire concert before my tick bite. Once I was bitten I suffered from very heavy fatigue and I had an incredibly hard time even walking up the stairs to my bedroom. I actually remember going very slowly because each step left me short of breath and dizzy. I often would lean forward and use my hands and arms to go up the stairs. Prior to actually finding a doctor to treat me, I had even posted a message about feeling like I was going to pass out when I was trying to stand behind only one person in order to buy a book. The strain of it was leaving me in a sweat and with a tightness around my chest. It has never went away. It was good to find that post because it was proof for me that it was the disease which caused this, not my treatment.

Ok, so now to the question of whether or not she should continue with treatment. I honestly can't answer that. She's going to have to do what is best for her but I honestly doubt that treatment will cure this problem. I did years of treatment and a great deal of IV treatment as well. I don't regret any of it because I do think it helped with a number of other symptoms. Did it cure all of them? No. However, I was on a rapid decline and it stopped the decline and I improved all around a great deal. The POTS wears me out and prevents me from holding a job so it was important to get that diagnosis in order to get disability benefits. I had horrible headaches in the beginning and I would say that if she still suffers from really bad headaches that she may want to continue treatment.

I have read enough that I truly believe this disease is persistent. Furthermore, I have also had my EM rashes come back after years of antibiotic treatment. They returned very slowly over several months of stopping treatment. To me, that was proof enough that I am still dealing with the disease but there was a recent study released by Hopkins (can you believe it?!) that even stated that recurrant rashes AFTER antibiotic treatment can be evidence of chronic and persistent disease. Eventually, I want to take antibiotics for about 2 weeks for about 2-4 times a year to keep things under control. Hopefully.

I don't know if anything I said here was at all helpful but the POTS is likely permanent. She needs to get and echo done at a VERY reputable cardiac clinic and be assessed for mitral valve prolapse because that may be a reason for her problems. I talked with a mitral valve repair clinic in Maryland and they told me that most of the echos done are very poor and miss a great deal. That's why she needs to get this checked out somewhere good. She also needs to get her thyroid checked at some place that specializes in thyroid disorders because that is a problem which may also contribute to her problems with POTS. POTS is supposed to be a diagnosis of elimination but sometimes, it is good to get the POTS diagnosis first (insurance/disability support) and then begin to eliminate things that may have caused it. Despite having a cardiologist who knows I have this problem, I have had very little diagnostic work ups. I'm not happy about that. However, he has been very supportive so I can't complain about that.

Oh, and tell her to get an exercise bike and start riding it if she has become deconditioned. The more time she can spend exercising on the bike the easier it will be for her to handle her day to day activities. The chronic fatigue doctor told me to start off doing activities only a few minutes at a time, take a break for 5 to 10 minutes, whatever, and go back to the activity for a few minutes again. I literally started out with only about 2 minutes on the bike, lay on the floor and break for 5-10, get back on the bike for 2 again, break 5-10, back on the bike for another 2 and recover. Since the time is so little, it is best to recover and do at least one repetition. Gradually, build up to longer amounts of time.

I started out like this in February and have built up my time so that I can go for a much, much longer time now. It never fails to amaze me how long I can stay on the bike or even go for a walk but that simply sitting or standing exhausts me so quickly. When I sit, I keep my legs up or sit on the floor so my knees are bent next to my chest because that is a little less strain on my heart. However, it is nice to be able to push myself physically otherwise I'd spend all my time laying down.

Tell your friend she really needs to slowly condition herself because it will give her some quality of life that she is likely lacking now. She can push herself harder once she has gotten a little stronger. For me to start feeling more energy took about 3 months, working out at least 4 days a week. It's five months now and I'm still going. I'd have to hurt someone if they tried to take my bike because I know I'd backslide within a few weeks. I have a bad knee so I don't use any resistance either because that would give me a knee injury and I wouldn't be able to continue working out. I just wanted to throw that out there so that she knows she can see improvement without having to do a grueling ride.

Cheers,

Angie

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TheCrimeOfLyme
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I did.
I was dizzy constantly when I walked around ( couldnt walk around), had extreme neck/shoulder/head /jaw pain that was CAUSED by walking around and basically, just spent my days in bed.

Im cured of that now, THANK GOD. I did so much stuff, I really don't know what helped it. I did non traditional treatments ( alternative stuff)

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WildCondor
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Sent you a PM.
I got better with long term antibiotics and atenolol/zoloft/florinef. if you do a search on here you will see many past posts on this subject.

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dtiffen02
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I have pots, abnormal sweat testing, and other stuff. I'm currently on IV rocephin, but am not sure whether "Lyme" is the culprit. Few other things on the table as a DD, including chagas.
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lymie tony z
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Just to help clarify pots vs lyme a little.

I looked it up long ago and decided against Potts being what tormented me.

Potts is associated with a tuberculosis like infection of the spinal column...lyme or tbd's also infect the spine as well as every other body part and organ.

What one has to do is put the symptoms of what they suspect or have been diagnosed with side by side with symptoms they have and symptoms of lyme or tbd infection.

Yes, we can have Potts symptoms but many of us have extra symptoms that are'nt related to potts but come along with lyme.

If you get ANY diagnosis that let's you LEGALLY go on dissability than go for it....cuz you will have a hell of a time getting disability with lyme as your diagnosis.

However, remember that this spirochete is a GREAT IMITATOR of other diseases and in my opinion needs to be erradicated with antibiotics,antivirals and anti-fungals.

Dysautonomia is a RARE Heredity usually associated with Jews....not my description...taken directly from Tabors medical cyclopedia.

Y'all do what ya want...but for my money it ain't Potts...just symptoms that resemble Potts.

Good luck.....zman

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I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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am36
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I have POTS. Took 11 years to diagnose. If I have lyme, I think I've had it for 16 years. (still weaning off prednisone before testing)


The best info site for POTS is at www.dinet.org


I used to take midodrine, and then switched over to mestinon when they thought my muscle weakness is from myasthenia gravis (it's not). Florinef made my muscle weakness worse. The POTS meds don't work consistantly on me (or on many others with POTS).


The only time my POTS was under control in the past year was immediately following a bout of pneumonia after being treated with a very strong antibiotic.

Which leads me to believe that either this is a big coincidence,or I have lyme (or another infection?) that is causing POTS.

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lymie tony z
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Potts like symptoms are just one more disease that lyme imitates...

That is why the meds for Potts don't work and abx treatments alleviate the Potts symptoms...

cuz it ain't Potts...it's lyme....zman

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TheCrimeOfLyme
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POTS, Orothostatic hypotension , dsyautomia, nmh , etc CAN ALL BE CAUSED BY LYME ( or ANY infection)

There is a tilt table test that can be performed to actually diagnose it.

Lyme CAN induce Pots syndrome or anyone of the above. Lyme can also screw up other body systems that can cause any one of those ( POTS, OH) as well.

You going to say lyme can't cause meningitis next, because its not really meningitis?

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daystar1952
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I have POTS due to lyme disease. Antibiotic Treatment makes it less severe but I still have to take metoprolol for it. Actually recently I found out I was boerline low for thyroid hormones and am now being treated for that.

That also seems to help me quite a bit to stay upright for a longer period of time and it helps shortness of breath upon climbing hills. I am also much less likely to get faint when I squat and then stand up

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twoangie
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Crime,

You are exactly right. I don't know where the other poster gets the idea that dysautonomia type problems are all inherited or that it's just a symptom which will go away with treatment. There ARE many people who have inherited dysautonomia but just as many acquired it. If a serious infection attacks your cardiovascular, neurological system, etc., then it is very likely you will come out with some damage caused by the infection.

Now, in my case, I did NOT have POTS prior to becoming ill with Lyme. I went to a Dave Matthews concert and stoood through the entire thing not too long before I became ill. After I was bitten by the tick I became very ill very quickly. I noticed the symptoms of POTS long before I ever knew a name for the specific condition - and even prior to initiation of Lyme treatment. I have a post that I wrote which proves that. So, no one can blame treatment on the development of this condition. It was caused by Lyme and, in my case, it remains as damage from the infection.

By the way for the uninformed reader, the condition is POTS which is postural orthostatic tachycardia syndrome. This means that when you are still such as when you need to brush your teeth, wash dishes, stand in line at a grocery store, etc., the heart rate will speed up. Normally, these are situation in which there is very little change in the heart rate but in POTS, the heart rate can go up 20-30 points from baseline in the first minute and stay elevated. Your heart is working so hard that it is like you are exercising when you are simply trying to stand still. Relief only comes from moving or laying down.

For anyone wanting to learn more about these conditions (and you should esp if you are trying to obtain disability benefits and you have trouble remaining upright), please go to:

National Dysautonomia Research Foundation
http://www.ndrf.org/

Angie

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snowflake
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Thank you everyone for your opinions.

I know that Lyme can cause POTS, I HAD many symptoms of dysautonomia at my sickest, but many of those symptoms have gotten better with treatment, and some are completely gone. That's right, gone.

But that is me and I would like others who had symptoms of autonomic nervous dysfunction that got better to be encouraging to my friend and let her know that it can get better with treatment. She has only been on Lyme treatment for a couple months so she is just getting started in my opinion.

Please help me encourage her to stick this out. She doesn't meet CDC criteria (had some IND bands and a positive band) and is beginning to wonder about other diagnoses, even though her famous LLMD diagnosed her clinically with Lyme based on her symptoms and findings.

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twoangie
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tabers,

Wow! I'm sorry but I am not even going to bother to read your post in full. However, I have skimmed over and gotten the jest of it and I'm going to flat out thank you for reminding me of why I don't waste my time coming on this board these days. I can't believe you wasted so much time and energy attacking me and what has been my experience with this "symptom." Frankly, I don't care what you want to call it, I have had it five years and had 2.5 years of antibiotics with almost a year of that as IV. I have been off antibiotics for over 2 years now. Nothing I have done has cured this and I am completely offended with you telling me that my attitude is "gloom and doom." My attitude is ACCEPTANCE. Got it? Sure, there may be some who get over it but there are many more who do not. I know the sites you speak of and I've talked with many others with similar diagnoses over the years. That is why I also said to have other things checked out. Something else may be out of kilter. A diagnosis such as POTS is supposed to be a diagnosis of elimination, not first line. I'm not dooming anyone here or anyone else but, frankly, if you believe that antibiotics are going to cure EVERYTHING that this infection has knocked out of whack, then good luck with that. While it has brought me great improvement that I am greatful for, it has never cured me nor has it reduced this symptom enough that I can lead a productive life and hold a job again. I still struggle to get through a line. It's five years now, tabers. I haven't stopped looking for answers but I'm no longer frantically running from doctor to doctor hoping for a miracle. Furthermore, I have stated that there are many symptoms that antibiotics CAN help and this person needs to assess their own situation and decide what to do and what they are comfortable doing. Pushing people to take more antibiotics than they are comfortable with or feel they should is only asking for another doctor to be strung up by another medical board. If POTS is the ONLY symptom this person has, then pushing someone to take antibiotics indefinitely in hopes of curing it could be a very irresponsible. Sure, people have been treated for MS, ALS, etc and gotten better - but some haven't. Thus, the patient needs to make the decision to determine how far they want to go and how much they want to spend to see if they can get results. Anyway, you are welcome to come back and blast me for accepting my disability and allowing others to do so as well but I won't be responding to anymore bait.

Angie

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chroniccosmic
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I think it is really bizarre when the newbies start scolding the oldtimers.

I think this is a great post and have been thinking alot about ANS damage from Lyme. It seems that often on this board it is difficult sticking to the subject because someone has to take offense and make that the new issue.

Hmmmmm.

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Ann-OH
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There is a big difference between POTS and Pott's!
One seems to be named after someone named Pott, and the other is an acronym POTS:

www.dinet.org
[quote]
Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.


Now for Pott's:
http://www.doctorndtv.com/FAQ/detailfaq.asp?id=7203

[quote}
Tuberculosis (TB) of the spine (Pott's disease) is the most common site of bone infection in TB; hips and knees are also often affected. The lower thoracic and upper lumbar vertebrae are the areas of the spine most often affected.

There will be a quiz later!
Ann - OH

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WildCondor
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Crime and Angie are right!
Lyme disease can cause POTS by inflammation of the vagus nerve. Treatment with antibioitcs and treatment of co-infections can reverse the POTS.

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arg82
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I have dysautonomia that I believe has been caused by the Lyme disease. I was diagnosed with NCS (neurocardiogenic syncope) after a tilt table test in February of 2005 but I can look back and remember having "episodes" at least since 1998 or 1999 (I was diagnosed with Lyme in 1997, probably infected for about 7 years or more prior to that).

My NCS has caused a lot of problems and I currently am being treated for it with daily IV hydration which has helped a lot but I still can't stand for long periods of time, have a hard time in the summer (both the heat and the humidity get to me but more so the humidity), and I have trouble with related GI stuff (having to do with the vagus nerve - the same one affected with dysautonomia).

In my case, it's very unclear whether the NCS will reverse itself with proper Lyme treatment, which I'm having trouble handling due to GI complications from the NCS and/or Lyme so it's a viscious cycle. But, I have a friend with both NCS and Lyme who is doing very well after long-term, aggressive treatment for Lyme and requires no (or very little) medication for her NCS.

I didn't read through all the previous responses but want to echo Ann-OH's info about the big difference between POTS and Pott's. Because of this, a lot of my online friends who have POTS either call it dysautonomia or say the whole name - Postural Orthostatic Tachychardia Syndrome. Some have made the mistake of referring to it as POTS to doctors and then the doctors looking in their chart for info about their TB infection.

Another good site for info about dysautonomia - http://www.dynakids.org - a group I belong to for young people with dysautonomia.

Peace and healing,
Annie

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lymie tony z
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First of all thanks Ann for informing me of my error about Pots with one "t" and what I thought the original post was referring to as Potts with two "t"'s...

I did'nt realize there were two seperate and distinct diseases or symptoms/conditions. I too have mitral valve regurgitation and it has never been called pots. I don't even see it in my Tabers cyclopedia...so it must surely be newish.

However it is a nerve condition and we all know what lyme does to our nerves....

Second, Thanks Cosmic....I don't know why someone would attack me for putting out information designed to help folks...

Unless of course you were referring to my supposedly attacking Angie...which is a totally undocumented accusation.

Your comment was somewhat unclear as to who was who.

Third crime I did'nt say lyme does'nt cause MS or ALS...or any other of the names/diagnosis given us due to our symptoms.

But then again if you ask any of these mainstream ducks what the etiology/cause of these diseases are...they shrug there shoulders and say "we don't know"....so why could'nt it be lyme disease as their cause. They just have'nt put two and two together.

Fourth...What in hell are you talking about Angie?

First, my name is Tony not Tabers...I use Tabers cyclopedia to look up stuff I don't know about. I was merely quoting that book...

I apparently got pots mixed up with Potts...cuz I did'nt know there were two so close in name.

NO ONE "Attacked you or anyone else here" so what are you talking about?

No One mentioned anything about "gloom and doom" either...
What the hell are you talking about???

I suppose I should have elaborated about my contentions.

One can call it pots or ms or als or whatever and get on disability and God bless...
BUT what is the main cause or Etiology of these many and varied symptoms/diseases manifesting themselves in mankind?

It is my contention that it is the spirochete that is associated with lyme disease AND OR another such spirochete that has as yet gone undetected or undiscovered that is at the very root of all these diseases. That said and given that lyme itself can trigger many symptoms that mimick other syndromes and diseases....

I have come to my own conclusion that lyme IS the spirochete that IS the etiological culprit!

This is based on my own personal experiences as well as some stuff I have read about on this board and elsewhere.

Such as recent discovery of a spirochete that seems to be the etiology of MS and recent treatment for ALS with antibiotics.

Now you can call it tomatoes or tahmahtoes...you can call me Ray or you can call me Jay or you can call me J J but ya does'nt has to call me Johnson!(sorry, anyone too young to remember Laugh in, won't get this)...

All I'm really saying is given that lyme/coinfections have a devistating effect on the very cells of our bodies thus creaping into every part of our bodies it's no wonder that we have so many and so many and varied symptoms/diseases and diagnosis.

The ducks have to call it something!

I believe strongly that they are TBD's initially, AND can and are transmitted either in Utero and or thru sexual contact and or blood transfusions in much the same way as body parts that are infected have been shown to transmit diseases.

Why else do the doctors ask if you've had any transfusions in your life history. Hell, they know there mistakes in not screening for infectious diseases.
Afer all a spirochete like syphilis was transmitted in the same ways...so was AIDS...BEFORE they started screening...and given that Lyme is such a negated disease by mainstream medicine....

IT's NOT screened for!

This may be the reason why many of us don't see the tick...cuz we were never bitten...we got it by other means.

OK now Angie...if you don't read this...your the worse off...but before you go accusing anyone at least get there name correct....and at least read what they have to say without reading into what isn't there...and accusing anyone of attacking anyone here.

And oh yeah...kindly break up your posts so those of us with neurolyme can appreciate your candor. [Razz]

zman

[ 25. June 2006, 10:43 AM: Message edited by: lymie tony z ]

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I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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TerryK
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I have NMH (neurally mediated hypotension) which is mentioned in Dr. B's treatment guidelines, page 6 and page 27.
http://www.lymenet.org/drbguide200509.pdf

Hypovolemia (low blood volume) as mentioned by Dr. B, can be part of the picture as it is for me. Dr. B say's that Creatine (a supplement) can be helpful as can other meds such as beta blockers and blood volume expanders. He states that the long term treatment is restoration of proper hormone levels (my note - probably aldosterone, renin and other hormones that affect blood pressure etc.) and treatment for lyme.

NMH and hypovolemia are also recognized in Chronic Fatigue Syndrome due to research by Dr. Streeten (now deceased) and Dr. Bell. As already mentioned, these type of problems are seen in infections.

Oddly enough, I got great relief, as have others, from guaifenesin treatment for fibromyalgia. Even though I was on beta blockers and other very strong meds for the dysautonomia, I didn't get any real relief until going on the guai protocol. I went from hardly being able to sit up for more than a few minutes to being able to sit up for hours at a time.

Guai treatment helped in a few other area's but did not resolve my illness to any real extent because my illness is caused by a Bb infection. Who knows why it worked but I do know that others have been helped in the same way. Fibromyalgia seems to be common in chronic lyme so I guess it's not that surprising that whatever helps fibromyalgics might help chronic lyme symptoms.

It's too early for me to tell if lyme treatment will resolve my dysautonomia since I've only been on treatment for a short while so I continue on with guaifenesin protocol because when I am not on the protocol properly, the dysautonomia seems to get worse again.

I'm still on beta blockers and other meds for dysautonomia and the other key for me is to stay very hydrated. In other words, drink lots of water and eat plenty of whole salt (sea salt) in order to keep blood volume expanded.

BTW - many in my family are sick with lyme symptoms and everyone who has been extensively studied for dysautonomia has it. We are not Jewish, I'm positive it's a result of infection and possibly a genetic pre-disposition, at least for me and my family.
Terry

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TerryK
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Tabers, thank you for explaining your feelings and having the humility to apologize. You explained why you posted the way you did and it is appreciated by me and hopefully by others.

Don't stay away from the support you can get here because of this experience. Just don't take it personally when someone gets upset. Take what makes sense, give what you feel you can and leave the rest. I understand about feeling fragile but you may need to put yourself in a different frame of mind in order to get the most out of this board and to help others as well.

Some of us have been dealing with this illness and symptoms for a very long time and even though we haven't been on this board for a long time, we have information based on our research and experience that may be helpful to others. I think it's important to share it, even if it does not agree with long time users of this board. Not only might we ourselves learn something new, but old timers here might learn something new as well.
Terry

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lymie tony z
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OOOOOHHHHHH!!!!!!!!!!

Thanks Tabers for clearing that up...I never saw your post...

However...DO STAY HERE for help and info AND understanding...

I too get where you're comming from...let me tell you that at one time my heart actually stopped for up to eight beats and then started again...or at least no one could feel my pulse for that period of time.

I did'nt have mitral valve regurgitation at the time...but that came later.

The first symptom is gone...the mitral valve regurge is still with me but at a way lower occurence level.

A lot of my previous symptoms have gone and not returned and some do return but on a lower level...so I am not convinced that what ducks say about RESIDUAL dammage being permanent is true.

Keep fighting...and re-training your body...I believe it's all reversable...with meds,supps,retraining old nerve avenues...etc.

Do not give up! And stick around.

We're all sick around here and we sometimes forget that and get our noses out of joint...

BUT...I believe we are all here for the same purpose...except some of the trolls that pop up once in awhile.....

To those who I thought were referring to me as taber....
Let me use the words of the late great comedianne
on early Saturday Night Live....."NEVER MIND" or
that other guy....EXCUUUUUUUSE ME!...

Terry...here's something to much on...
If we believe that the Jews wondered 40 years in the desert...

AND if we believe the emminant doc at BOWEN labs who found BB in the very sand over there and is picked up by winds aloft and deposited over here in America....
This could explain why Jews were believed to have a hereditary disease...cuz bb is transferred in utero...so they got it first

and now we have it cuz of winds aloft....

YES my tongue is logged firmly in my cheeck on this one so don't scold me.......zman

zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Very well said Terry! And thanks tabers for clearing things up. I was puzzled as well.

Hang in there and you will beat this thing. Don't stay away because you're fragile. Lyme will make you tough as nails!

I don't have an official dx concerning NMH or POTS, because a nurse messed things up when I was given the tilt table test. I decided not to get retested.

My tachycardia is still there, but I don't have the faint feelings and the actual fainting I used to get.

I think Lyme treatment HAS improved whatever condition I have. I hope your friend will also get treated for babesia. I think alot of my heart, dizziness, and fainting may be related to my babs.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Al
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I was really glad I happened to read this post;
It described in detail what I am going through.
I started passing out 3 years ago and became so dizzy I can't walk
, I continue to have the pass outs every month or two and the tachycardia is severe. My pulse go's from about 80 BPM sitting to 130 walking to the kitchen. I have to hurry up and make it to the couch or I will collapse to the floor.
My ears ring all the time and feel like they are full of fluid.I have just about all the symptoms
linked to lyme and just got my test results back.
I'm possitive , 6 bands Igg and 4 bands Igm for lyme ; (W.B.)
One symptom not mentioned is when I look at the computer screen I have what I call mini siezures
I also have these just before I fall asleep.
I used to go into stores when it first started and had to leave quickly because the lights made the dizziness worse.I've been to the ER. 6 times
with the syncope spending days in the hospital with many tests and MRI's etc.

Here is what I learned so far My Tilt table test was abnormal. A brain stem response was abnormal.
My Renin, Aldosterone, Sodium, and Citrate are very low.
My Cardiologist, E.N.T. Endo.and Neph. are confused although the Cardiologist said he thinks that lyme is at the root of all this because of all the work ups I've had. I now have a 60 day heart monitor on to see if I can catch
what my heart is diong when I pass out.

I would like to hear from anyone willing to share their expieriences with me and anything that may help with symptom relief.

Al ( Connecticut ) [email protected]

P.S. 6 people on my street alone have documented lyme disease

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TerryK
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I saw an LL Naturopathic Doctor today who said that she hasn't had one single lyme patient who didn't have a problem with their blood pressure. She said many have low blood pressure. I thought it was interesting and pertitent so thought I would pass it on.
Terry

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tabbytamer
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I have neurally mediated hypotension (diagnosed via tilt table test) which has similar symptoms to POTS.

Anyway, greatly improved with abx treatment for Lyme. I have been able to stop taking Proamatine (midodrine) which was prescribed to me a few years ago for the near fainting, etc.

--------------------
Tabby

 -

California Lyme support group

Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
snowflake
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Oops, sorry. I didn't mean to abandon this thread. I do appreciate everyone's input.

Yes, Lymetoo, I also think many heart related issues are because of babs. I know that my tachycardia and chest pain and irregular beats resurfaced when I began treating babs. I am glad that the fainting issues improved for you with Lyme treatment. I rarely get dizziness anymore thank goodness!

TerryK, thanks for mentioning the NMH in Dr. B's guidelines. I know that she has these as a resource. Interesting what your doc said about many with lyme having hypotension issues.

Tabby, thanks for also sharing that your NMH symptoms have also improved with Lyme treatment.

I hope that my friend finds this information encouraging. She wanted to get a tilt table test but the general duck she saw would not order it. She is looking for a new PCP and does see a great LLMD.

--------------------
We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late.

Posts: 221 | From the hills | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
snowflake
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Al,

I will send you a PM.

--------------------
We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late.

Posts: 221 | From the hills | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
lymie tony z
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Al,
don't be too surprised if your holter monitor does'nt catch your heart issues...

Although I can feel mine the 24hour monitor never caught it.......

I belive it was caught on an echo card test.

zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
snowflake
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Here are some great links for those with autonomic system dysfunction due to Lyme.

http://www.lymeinfo.net/autonomic.html

--------------------
We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late.

Posts: 221 | From the hills | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
Al
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I'd like to say "THANK YOU" to all who posted on this topic, especially Snowflake for the detailed information. I've been looking for this connection to lyme for 2 years. I visit other forums and no one ever made this connection or at least made it clear.
Again , Thank You! Al

P.S. What meds are any of you taking ? and is co infection part of this (POTS/lyme)

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Al
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Lyme/Pots, No difference.


Tachycardia (Grubb, 2000)
Lightheadedness (Grubb, 2000)
Dizziness (Grubb, 2000)
Palpitations (Grubb, 2000)
Exercise intolerance (Grubb, 2000)
Blurred Vision (Grubb, 2000)
Chest discomfort and/or pain (Grubb, 2000)
Clamminess (Grubb, 2000)
Fainting or near fainting (Grubb, 2000)
Anxiety (Grubb, 2000)
Flushing (Grubb, 2000)
Fatigue (Grubb, 2000) (which can be disabling)
Headache/migraine (Grubb, 2000)
Shortness of breath (Grubb, 2000)
Postprandial hypotension (Grubb, 2000) (low blood pressure after meals)
Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color)
Intolerance to heat (Grubb & Karas, 1999)
Feeling cold all over (Grubb & Karas, 1999)
Low blood pressure upon standing (Grubb, Bloating after meals (Grubb et al., 1997)
Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)
Delayed gastric emptying (Grubb et al., 1997)
Polyuria (Jacob & Biaggioni, 1999) (excessive urination)
Diarrhea (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)
Tremulousness (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)
Tunnel vision (Low et al.)
Sleep disorders (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
Cold hands (Low et al.) (and often feet & nose)
Loss of sweating (Low et al.)
Hypovolemia (Low et al.) (low blood volume)
Chills (Low et al.)
High blood pressure (Low et al.)
Hyperventilation (Low et al.)
Numbness or tingling sensations (Low et al.)
Generalized weakness (Low et al.)
Reduced pulse pressure upon standing (Low et al.)
Low back pain (Mathias, 2000)
Aching neck and shoulders (Mathias, 2000)
Excessive sweating (Robertson, 2000)
Nausea (Robertson, 2000)
Noise sensitivity (Stewart, 2001)
Light Sensitivity (Stewart, 2001)
Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)
The above are symptoms reported by POTS researchers. Other symptoms sometimes reported by POTS patients include:

Arrhythmias (irregular heart beats)
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
Easily over-stimulated
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse)
Hyperreflexia
Irregular menstrual cycles
Loss of appetite
Loss of sex drive
Muscle aches and/or joint pains
Swollen nodules/lymph nodes
Polydipsia (excessive thirst)
Pupil abnormalities
Weight loss or gain
Feeling detached from surroundings
Restless leg syndrome

Posts: 789 | From CT, | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
am36
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Just to clarify


POTS vs Familial Dysautonomia


Both are forms of dysautonomia. FD usually has a juvenile onset and is a hereditary condition associated with Jews of Eastern European descent.


POTS is another form of dysautonomia, brought on by many factors, including infections, including lyme. One need not be Jewish to have it.

Posts: 169 | From former Philadelphian | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
   

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