Pots Can Be A Symptom Of Lyme Says My Llmd

[hippychic258]

I'm misdiagnosed with POTS and have been sick for 5 years and the last 16 months was bedridden by what I was told was Pots. I have now been diagnosed with chronic Lyme disease. I have been going to the wrong doctors and many many of them. The symptoms we have lead us to cardiologists and neurologists who for the most part know nothing about Lyme and don't even think about it and if they do they give you the standard Lyme test that I think is only 30% accurate (which I have taken 3 times and had 3 false negative results). in my opinion IGenix is the test to go with.

Every symptom of Pots can be a symptom of Lyme disease imo, which makes sense as I do believe that POTS is only a symptom of symptoms anyways.

I think Lyme is not curable but can be treated and you can get better! Medications used to treat Pots symptoms might not be good for Lyme and I think exercise can make Lyme worse! I hope this even helps 1 person!! I don't have Pots so I am not on here much but you can email me anytime @ Hippychic258@aol.com

Edited May 21, 2013 by corina

[issie]

http://forums.dinet.org/index.php?/topic/22047-new-doctor-new-ideas-could-this-be-the-answer-or-at-least-a-part-of-our-puzzle/?hl=protozoa

Big discussion on this. My doctor also thinks that Lyme or protozoa infections play a big role in POTS. But, I'm not sure that it is the complete "cause" of it, for me - but, if you're positive for it ---it would only make sense that treating it should improve things for us. I'm encouraged so far and find myself improving with my diet change and treating this with supplements and meds. I'm mostly working on my immune system and getting it to recognize things that it is letting slip by and working on inflammation. It's a slow process and takes time. But, I really feel like I'm getting better. Not totally well. But, any improvement --I'll take.

I've had several PM me and let me know that they are also positive. So some of us are finding this to be an issue for us. Also, the DINET info pages says that Lyme has been found to be a possible cause of some dysautonomias.

Issie

[corina]

Thanks for being patient with me Hippy and glad you have made progress.

[ramakentesh]

Always good to read a positive story.

[margiebee]

Did you ever recognize having a tick bite or do you think you got it some other way? Reason I'm asking is the possibility of Lyme always sticks in my brain because when I was very young my parents took a tick off of my head, but it was not embedded in my skin or anything and it was not a "deer tick". Also that was quite a long time ago before I became very symptomatic but I do wonder about Lyme, although the testing would be too expensive for me currently I think

[Racer]

Did you ever recognize having a tick bite or do you think you got it some other way? Reason I'm asking is the possibility of Lyme always sticks in my brain because when I was very young my parents took a tick off of my head, but it was not embedded in my skin or anything and it was not a "deer tick". Also that was quite a long time ago before I became very symptomatic but I do wonder about Lyme, although the testing would be too expensive for me currently I think

Odds of getting lyme from a tick are slim at best. I am a wildlife photographer (mostly hobby) and spend tons of time in close proximity with deer and other wildlife. I usually end up with a couple tics per year. I get lyme tests and have always been negative. Ether I am the luckiest person in the world, or this whole lyme thing is rare and just gets hyped up

[ramakentesh]

Did you ever recognize having a tick bite or do you think you got it some other way? Reason I'm asking is the possibility of Lyme always sticks in my brain because when I was very young my parents took a tick off of my head, but it was not embedded in my skin or anything and it was not a "deer tick". Also that was quite a long time ago before I became very symptomatic but I do wonder about Lyme, although the testing would be too expensive for me currently I think

Odds of getting lyme from a tick are slim at best. I am a wildlife photographer (mostly hobby) and spend tons of time in close proximity with deer and other wildlife. I usually end up with a couple tics per year. I get lyme tests and have always been negative. Ether I am the luckiest person in the world, or this whole lyme thing is rare and just gets hyped up

Its an interesting area. Largely considered by medical establishment in America to be a dodgy diagnosis. My friend who is a physics grad was writing a blog debunking IGENEX for false positives but was concerned about litigation. its even more interesting in Australia where no recognised govt authority has identified Lyme or Lyme-related ticks in Australia yet patients groups are now claiming Lyme disease has caused a variety of health complaints - often POTS and other things and also report benefit from Lyme treatments.

Ofcourse it is possible that chronic antibiotic treatment causes immuno stimulation or suppression and some how calms down an autoimmune response. No idea really. I am personally pretty sceptical mainly because it doesnt for my mind explain the male v female balance in conditions like POTS or the sudden onset after stressor but I cant argue with people that tell me how dramatically better they feel after Lyme treatment - credible people that I doubt would succumb to placebo effect.

its all very confusing - like how EDS causes POTS - why is it often again an acute onset later in life after a stressor in some? that doesnt make sense if it is as we are told a genetic disorder causing abnornalities in collagen synthesis that compromise the elasticity of veins. If that was its primary cause you would presume that selective venous constrictors would 'cure' EDS POTS - but many have hyper symptoms with prominent tachycardia - or at leas they tell me they do

[issie]

If EDS was the cause of POTS ---why don't all EDS people have POTS? They don't. I don't believe it's the cause. It's just something else we add in as one of the symptoms. Another DX. Along with MCAS - which seems to be just as much an issue with those with EDS and HyperPOTS symptoms. We have to get to the core reason. We aren't there yet. I keep saying what I think it is and that's what I'm treating ---the immune system. Also inflammation and working on genetic mutations. Working to get around the dysfunctions there. Supporting the body as best I can via diet, and supplements, some low dose antibiotics and antimalarial herbs and enzymes. I think I place almost as much value in the diet as I do anything. But, the combo of it all is making a BIG difference. And I don't think that I'd get trapped into a placebo effect. I've got lots of friends and family noticing my improvements and that is undeniable. The treatment for Lyme/protazoa is making a big difference for me.

Issie

[hippychic258]

@ Racer, Glad you have tested negative for Lyme I also did 3 times because the standard test is only 30% accurate, then I went to a Lyme specialist and was tested through Igenix as well as many many other blood tests and there is no doudt, so you may want to look into a test that is more accurate if you haven't already. Getting Lyme from a tick is not slim to none. I was bitten 30 years ago and had some symptoms all my life here and there but nothing to alarming then about 5 years ago major sickness. There are thousands and thousands infected and very very sick from Lyme disease. I hope you keep testing negative

@margiebee Yes I was bitten 30 years ago, I was bitten by a brown dog tick, not a deer tick. The correct testing is worth the money but it is expensive.

Lyme flares are worse because of stress just as Pots is, when your body is fighting an infection such as Lyme add stress to that your body can only handle so much so any stress makes Lyme symptoms worse. You can be symptom free and then something stressful can happen and that can bring Lyme out in full force that is what happened to me.

@ Corina Thank you

[ramakentesh]

@ Racer, Glad you have tested negative for Lyme I also did 3 times because the standard test is only 30% accurate, then I went to a Lyme specialist and was tested through Igenix as well as many many other blood tests and there is no doudt, so you may want to look into a test that is more accurate if you haven't already. Getting Lyme from a tick is not slim to none. I was bitten 30 years ago and had some symptoms all my life here and there but nothing to alarming then about 5 years ago major sickness. There are thousands and thousands infected and very very sick from Lyme disease. I hope you keep testing negative

@margiebee Yes I was bitten 30 years ago, I was bitten by a brown dog tick, not a deer tick. The correct testing is worth the money but it is expensive.

Lyme flares are worse because of stress just as Pots is, when your body is fighting an infection such as Lyme add stress to that your body can only handle so much so any stress makes Lyme symptoms worse. You can be symptom free and then something stressful can happen and that can bring Lyme out in full force that is what happened to me.

@ Corina Thank you

Without wanting to sound annoying there is always doubt! Nothing about poorly understood conditions like POTS is ever unequivocal at least at the moment.