The True Cause Of Pots, They Know About It, So Why Arn't They Doing Anything About It ?

[Guest GaryRN]

The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis.

Src: Wilkepedia

I have seen the above as the cause of POTS on many sites. What happends during a viral or bacterail infection or Trauma ?

What do all of these things have in common ?

The answer is stress on the body. What does stress do ? Answer: It surpresses the immune system.

When one is immunocompromised, if you have a disease that is laying dormant, this is the perfect time for it to come out.

In my case, it was Lyme and the POTS came on down the road only when I started treating it and not before. For some of you, the cause may be different, but I honestly believe this condition is brought on by some sort of immunosurpression as I state above.

It doesn't mean it's Lyme, but it must be something that can get into the brain to cause Autnomic dysfunction.

The pooling in the extremities, or in my case, the "Hyperadrenaline" type seems to be merely a symptom rather than the true disorder or should I say underlying cause. In my case, to fix this by treating the symptoms would merely be a bandaid.

My POTS has changed within the last few weeks. I no longer get short of breath while standing. Why is this ? My Heart Rate still doubles and I take Benzos and Benadryl all day to control the Hyperadrenaline that I feel all over. It actually inhibits my mind to think straight some times due to the overactivity of the neurons in the brain. Once I calm everything down, I can think clear as day. The sedation I take doesn't even sedate me. It just counteracts all of this adrenaline and nothing more to balance me out so to speak. My symptoms are improving as I treat my Lyme. And just so you all know, my Lyme is a clinical diagnosis which means it didn't show up in my blood. Only about 35% of the people diagnosed with chronic Lyme actually show an antibody in the blood. There are many reasons for this: One of which is that the testing just isn't in place, in many people, the body doesn't recognize the bacteria as foreign as it takes on the "L form" and is ignored by the immune system, so there will be no antibodies made are seen in a blood test. There are several other reasons why Lyme doesn't show in the blood and way to many to go into here, but I just wanted to bring it up.

Have you ever seen people with Parkinsons disease have surgery to stop the Muscles Jerks ? They keep them awake during the surgery so the patient can give feedback. I have seen this surgery on some of the medical cable networks. What you often hear the patient say is "that tickles" or "that hurts", etc. When the brain is probed, all sorts of emotional reactions can be mimicked, even crying or perhaps anxiety.

Imagine you have some infection that is much deeper in the brain, where cardiac function is affected. This area is known as the "Medulla Oblongata". The Medulla Oblongata deals with autonomic functions, such as breathing and blood pressure. The cardiac center is the part of the medulla oblongata responsible for controlling the heart rate.

The medulla oblongata is located in the lower portion of the brainstem. It sits right above the spinal cord and is difficult to get to, but I honestly believe the problem rests there, whether it's from infection, or some other means. It just makes sense given that most cases are documented to come on after some sort of virus, infection, or trauma, that a lowered immune system would be associated with all of this.

My biggest question would be associated with Trauma. Why would a trauma bring this out ? These people arn't developing PTSD or any other problems for the most part. Giving birth to twins is a good example. This is definately a trauma. I postulate again, there must be some type of correlation between a lowered immune system and "letting the cat out of the bag".

I'm not a Dr., so take what I say with a grain of salt and for education purposes only, but I honestly feel that it is this area of the brain that is being affected to cause these symptoms. Lastly, I want to end this post by saying that I'm not in any way shape or form saying that any of you have Lyme. I'm using it as my example and perhaps it is something you should look into. There is a big war going on between the IDSA and ILADS organization. IDSA are you infectious disease Dr.'s, where ILADS are your LLMD (Lyme Literate) Dr.'s, who are now popping up all over the country as many are presenting with Lyme symptoms. This is what I'm dealing with.

Take care and be well,

Gary E. BSN, RN

[mcaimless]

I tend to agree with you Gary. I've done a lot of research on this, (as have many of us) and feel that this is an immune system dysfunction, be it under or over activated. I really believe that many of the cases of dysautonomia stem from autoimmune disease as well as its offshoots like FMS and CFS. I also know that immunocompromised people have autonomic dysfunction as well.

I am currently exploring LDN (Low Dose Naltrexone) as a promising way to treat this at the source (by blocking the opiate receptors and allowing an increase in endorphins). LDN is an immune system modulator and it seems to work well with all kinds of immune and neurological disease. I've started on 2mg and while it's too early to tell yet, I'm hopeful it will help me.

If you're interested check out the LDN site at lowdosenaltrexone.org and there is also a Wikipedia entry on it. There is also a very good book out by Elaine Moore called "The Promise of Low Dose Naltrexone Therapy".

[potsgirl]

Gary,

I found your thoughts very interesting, and have wondered about the causes of POTS from viral infections quite often. I was told that I probably acquired first cardiomyopathy, and then POTS, due to a viral infection. I got sick about 4 months after moving to Tucson, and while no blood tests proved it, it was assumed that I had Valley Fever which was the catalyst for the other illnesses. However, within the last 15 years of my life, I've also had bouts of what my doctors termed a viral infection that lodged in my brain, which left me lying flat on the couch or bed all day, unable to even move my head due to the extreme nausea and dizziness it would produce. I would be entirely incapacitated for 7-10 days, and this usually hit every year or two. I wonder, however, about all of the 'virally induced' diseases. It worries me a little that so many times this is used when there is no easy answer.

Cheers,

Jana

[BelieverEM]

I was on LDN for a while, when my doctor suspected Lyme disease (I tested negative for it, but positive for Bartonella, which he said was a sign, and that may people who are positive test negative anyway). After a few months, I changed insurance companies and the new one doesn't cover it, so I stopped. How long does it take to see results? In YOUR opinion, has it helped with your POTS?

Thanks, Erin

[Guest GaryRN]

I was on LDN for a while, when my doctor suspected Lyme disease (I tested negative for it, but positive for Bartonella, which he said was a sign, and that may people who are positive test negative anyway). After a few months, I changed insurance companies and the new one doesn't cover it, so I stopped. How long does it take to see results? In YOUR opinion, has it helped with your POTS?

Thanks, Erin

Eriin, it depends on how long you have had the Bartonella and how you are treating it.

It's kind of funny, as one of the therapies for POTS is to increase your salt intake, while this same approach is used to treat Lyme alternatively.

Their may in fact be some correlation that the MD's just don't understand. With regards to Lyme, the salt creates an Alkaline environment and kills off the bacteria this way and eliminates them from the bowel through Osmosis. I made a 3 part video series on how to treat with a protocol called the Salt / C protocol. Please do watch the videos at http://youtube.com/lymenurse

If you tested pos. for Bartonella, you probably have Lyme as well (Borrelia b.). They go hand in hand. Perhaps even Babesia. I would not let this go untreated. The bacteria reproduce through Mitosis every 3-4 weeks, so the longer you wait, the higher the bacterial load gets and the harder it is to erradicate.

I would find an LLMD in your area and get going on this.

Gary

[icesktr189]

See my problem is that i had symptoms for as long as i can remember ( around 8 or 9). My mom also has dysautonomia just not half as bad. Mine just went ten fold as soon as i hit 19ish. I have no clue what caused it however. I have never been tested for lyme

[janiedelite]

Hi Gary,

I'm also an RN and had to quit working as a critical care nurse because of my post-viral/neuropathic POTS. I totally agree with your theory of immunosuppression. My mom developed small fiber neuropathy as she came out of remission for carcinoid syndrome 4-5 years ago. I developed small fiber neuropathy 4 months after having mono and 1 month after a bad car accident. Obviously, mono suppresses your immune system. My WBC's were 2.4.

In our case, I think there is a genetic glitch that was triggered by some event that suppressed our immune system (mono in my case, cancer in my mom's), which triggered either a genetic predisposition toward an autoimmune response or allowed a harmful genetic trait to emerge once our immune systems were compromised.

I was given the post-viral/neuropathic POTS diagnosis at Mayo, and I hope I can recover although I haven't seen recovery yet. And if there is a genetic predisposition toward neuropathy then I may have the more usual waxing and waning others experience. I was glad to finally be diagnosed with neuropathy as all the other experts in my area were at a loss to help me. I do think after years of research, the POTS experts have found common pre-POTS incidents (like mono or trauma) and they don't actually know the specific underlying cascade of events that takes place in our bodies that would actually cause POTS. I will never give up trying to learn more about how this debilitating illness occurred in my family. I know I'm not a researcher in the official sense. But I don't think I can ever give up on trying to figure this out! Feel free to PM me anytime.

Interesting what you said about suppressing the sympathetic NS does to help your symptoms. I don't think I have any disorder of the brainstem, but I do know that standing norepinephrine levels are high (1089) in compared to supine (250) which reflects an intact sympathetic response to my being upright (and all the pooling that occurs because of my neuropathy). I haven't taken benzos because I think they would make me feel great and I would want to take them all the time. I do take benadryl, though, which helps suppress my adrenaline symptoms (tremor, nausea, palpitations, etc.) without making me drowsy. I always was drowsy on benadryl pre-POTS. Although, like you said, my heart rate is as abnormally high as ever even on benadryl. You're right in thinking if we could suppress all the extra adrenaline, we probably wouldn't feel all that bad. But my Mayo doc says my high adrenaline levels are actually a good thing because they represent a healthy sympathetic NS, which unfortunately some folks with dysautonomia don't have. I don't think I'd want to trade places with them.

Good luck and take care, Janie

[mcaimless]

Erin,

LDN is being used with much success for Lyme and many LLMDs prescribe it. Dr Ken Singleton, author of "The Lyme Disease Solution" is also a proponant of LDN for late stage Lyme. You cannot take it if you are being prescribed any narcotic painkillers though.

I am paying for my LDN out of pocket and it isn't a terribly expensive drug-- about $30 a month from a compounding pharmacy. Check out the lowdosenaltrexone.org site for recommended pharmacies.

I've only been on 2mg starting dose for 4 days now so it's too early to tell if it's helping me or not. I don't have Lyme but I do have Fibromyalgia and RA and accompanying dysautonomia and POTS.

I think we all have a combination of factors that contribute to these syndromes and diseases, including stress, environmental toxins, and genetics. I have a sibling and my mother with autoimmune disease. I lived my childhood in a smoking household and used toxic chemicals in my work. I was subjected to a terrible amount of stress during much of my adult life with resultant PTSD. All of these things, I believe, are factors in why I am where I am now healthwise.

[Rosie]

Hello Gary and all..

I don't post here often, but do still read. And I do believe you are on the right track. You might want to have a look at Autoimmune diseases + Pyrin and/or Cryopyrin (proteins). These act as 'brakes' for the immune system response. Some folks don't have these proteins, thus our bodies create the Autoimmune response.

Regards.

[abbriggs]

I have always taken beta blockers to help control some of my symptoms. But, with me my BP and Pulse are HIGH when I am up right and LOW when i am laying. Beta Blockers always made my BP drop in the 70/30 range while laying and HR in the 30's. Because of this I stopped taking them. It was not until I stopped taking beta blockers that my tremor showed up. It is quite unnerving and only getting worse. Does Benadryl work in the same manner as Beta Blockers? It has always made me so sleepy.

Thanks

[pearsjon]

thank you for postulating some of the theories i myself have had. something is causing this, and i have not been able to find a trigger for me. probably had it since a kid.

when they say trauma, do you think they mean physical, mental or both?

if that is the case i should be dead, with either one of those.

keep helping us , we truly appreciate it.

THANKS

[Rosie]

Firewoman.... I have read lots of your posts. We have many symptoms in common. I have had symptoms as long as I can remember.... first fainted when I was about 7 yo. Have the headaches, etc. After I had a virus last Fall, and a weird reaction to that, I had looked at MCAD, and began the treatment protocol for that. But I went beyond the MCAD because I just did not feel that was the answer.

Regards.

[turtlefairy5]

I believe that my POTS was caused by a virus I had back in '06. I've described it in another post on this forum, so I won't take up space here going over the specifics again.

What I'm getting from this post is that POTS could be caused from a virus that is still in the system. I've always thought (well, thought since getting my POTS diagnosis and reading up on dysautonomia) that my ANS was thrown off by the virus I had, and though I no longer have the virus, my ANS has never recovered, if you will. In other words, in my case, the virus was like a trauma to my body the same as a head injury, which threw off my ANS and caused this continuing issue.

Are you saying that we necessarily have to have a virus that is still in our bodies, or could ANS have been kicked off by a virus, and the ANS dysfunction continue despite the fact that the originally offending virus is no longer present?

When I first went to the ER, they tested for all sorts of things, viruses, etc. and found nothing.

I've felt that my dysautonomia started with that virus a few years ago because, looking back, that is when all of my symptoms started.

Thanks,

Amber

[Guest GaryRN]

Benadryl works as a CNS depressant. So for me, it helps with the overexcitability I get from the "Hyperadrenalin" associated with my pots. It's the second type of POTS, where my BP actually goes up when I stand up.

As far as Trauma goes, I think they are referring to both Physical and Mental trauma. For example, carrying and delivering twins would be considered both.

A car accident could also be both.

Mental trauma is more like the loss of a loved one, although mental trauma can result in physical stress, which could be seen as Physical trauma if you ask me.

Gary

[yogini]

Hi, I have POTS with no autoimmune issues. I believe a virus attacked my nervous system and made by body unable to maintain BP. I think the virus went away, but the damage was done. I am not sure that everyone has an autoimmune cause. There are many people on here with EDS, mitochondrial disease and other genetic issues which caused their POTS. I think hormones also play a part in things for women, which might be why some people develop POTS after pregnancy.

It is interesting, though, to read about everyone's theories. There is so much that is still to be learned abour our condition and I hope drs continue to do research so that they can figure things out.

[ramakentesh]

Sorry mate, but I dont agree. They DONT really know the causes.

Most of the causes of POTS that are proposed are still currently conjectural. And the wikipedia article isnt really the most accurate or reliable information available on current POTS research.

At the moment the situation is that different research bodies have very different theories and are pretty much competing to prove their own contentions on the causes of primary POTS. The periodical 'Circulation' is literally full of new studies about POTS in just about every new addition.

Doctors 'cant do anything about it' because the evidence isnt 100% there yet. Time is needed to prove which theories are correct and which arent. Then they can concentrate on medical interventions that are far more appropriate. As medical research is a slow process it probably wont happen before a while (although Ive been encouraged by Dr Stewart's recent work).

Some forms of POTS do appear to be autoimmune - but that doesnt automatically mean that autoimmune disorders are caused by stress - some people or some familes seem to have a genetic predisposition to autoimmune illnesses and the exact triggers may be environmental, but they may also be purely genetic or epigenetic. Stress can be a trigger. For me I have no idea what triggered the onset of POTS - one day i was ok other than occasional mild dizziness and bad migraines and then the next I had POTS (after a few beers with mates and some heavy exercise and a recent cold).

My point is that your reasons for POTs could be correct; and so could mine even though they may be quite different, but opinions arent science and until it is widely accepted that a specific mechanism is causing POTS research will not translate into new medicines.

Just to make it clear, here are the current proposed mechanisms for primary POTS in the majority of patients:

1. Partial Dysautonomia or High Flow POTS - an autoimmune attack on the nerves in the legs that control vasoconstriction, leading to excessive vasodilation on standing. Evidence for this form of POTS is the strongest but it does not account for all patients with primary POTS (those without pooling in the legs do not have this form of POTS).

2. Hyperadrenergic POTS relating to Mast Cell disorders. In this proposed mechanism, a subset of POTS patients that tended to have elevated blood pressure on standing were found to have comorbid mast cell disorders. The suggested theory is that elevated Mast cell activity releases histamines and heparins which produce excessive nitric oxide, both leading to vasodilation and an excessive sympathetic pressor response. Research on this form of POTS is comprehensive but still based largely on conjecture.

3. Hyperadreneric POTS - this theory suggests that a subset of POTS patients who show signs of very high sympathetic nervous system overactivity have a disfunctional noepinephrine transporter - so when norepinephrine is at the synpatic cleft and is constricting arteries and veins, it is not being transported away and recycled - it is staying there leading to excessive vasoconstriction, reduced blood flow around the body and into the carotid arteries and POTS symptoms. Again there are some pretty clear studies that suggest this cause in a subset of patients, but some research bodies do not accept that this model for POTS is correct.

4. Low FLow POTS - a form of POTS caused by elevated serum levels of Angiotensin II resulting in reduced nitric oxide in the veins, resulting in reduced blood flow around the body and POTS symptoms. Nitric Oxide is one of the molecules that govern vasodilation. if it is reduced or not available (in this case because angiotensin II is increasing oxidisive stress and reducing the bioavailability of nitric oxide) excessive venouse constriction results in this form of POTS. Dr Stewart has released quite a lot of recent work on this form of POTS and his results are very interesting. This is a relatively novel concept but the evidence to support it is mounting.

5. Normal Flow POTS - this proposed mechanism is caused by excessive nitric oxide in the gut region from a possible inflammatory response resulting in excessive blood pooling in the stomach and gut region exclusively. Again there is evidence to support this model and its worth checking out as well.

[ramakentesh]

Most of the evidence available tends to suggest that the problems causing pots relate to specific nerves or chemical regulators of blood flow and not areas of the brain.

[Poohbear]

Researchers are TRYING to do something. There are literally hundreds of reasons a person can develop dysautonomia. There is suspicion that some people have this because of an underlying autoimmune disease. However, to date, no specific antibody has been found as the cause. This is an active research process and there are at least two centers currently involved in researching and looking for the antibody(s) potentially responsible. Until it's identified no specific treatment can be recommended across the board. Autoimmune diseases can be a beast of their own and as some have found through their own trial and error process of trying different treatments (IVIG, plasmapheresis, various meds etc) that there are substantial risks to these treatments and there are very few people (dysautonomia patients that is) who've had success with these routes--probably in part, due to the fact that, unlike some other autoimmune diseases where they know what antibody to target, POTS does not have an identified antibody to target making the process much riskier and more of a crap shoot.

Until this disorder gets enough research funding and antibodies are identified it will remain a much slower process.

How do you know your POTS was caused by Lyme? Isn't it equally possible that your POTS symptoms are maybe a result of damage done to the body from the antibiotics since you say you had no symptoms of POTS UNTIL you started treating for the Lyme?

You wrote, "The pooling in the extremities, or in my case, the "Hyperadrenaline" type seems to be merely a symptom rather than the true disorder or should I say underlying cause" Pooling in the extremities does not = having hyperadrenaline POTS.

You state, "And just so you all know, my Lyme is a clinical diagnosis which means it didn't show up in my blood. Only about 35% of the people diagnosed with chronic Lyme actually show an antibody in the blood" How do you know you haven't been mis-diagnosed? How can you be confident you actually has lyme disease if no objective data confirms it? Aren't you concerned of a potential misdiagnosis if there is no objective testing to verify the diagnosis?

"the body doesn't recognize the bacteria as foreign as it takes on the "L form" and is ignored by the immune system, so there will be no antibodies made are seen in a blood test" If the body doesn't recognize the bacteria as foreign and the immune system "ignores" it then how is that considered an autoimmune disease? Autoimmune diseases are where the body attacks itself so if the immune system is "ignoring" this then it's not a disease process in which the autoimmune system is responsible.

I certainly hope you find answers and get good treatment. It's worthwhile to pursue any avenue that may bring better health but try not to close yourself off from other explanations or potential sources that have other root causes.

[Sophia3]

Ditto's to Poohbear and Ramak!

It's ALL EXTRAPOLATION the so called causes unless the ANS experts are idiots and I do not believe they are. Might have different approaches to treatment or theory..but like small rivers, they all are aiming to the same Ocean.

They are all doing what is in their power to study, treat and research.

Some clinics getting new doctors to study patients.

It's no money making machine to treat ANS patients and the doctors that do are over worked but I appreciate ALL of them!!!!!!!!!!!!

p.s. and not everybody here believes in the Lyme connection. just an FYI.

[Guest GaryRN]

Researchers are TRYING to do something. There are literally hundreds of reasons a person can develop dysautonomia. There is suspicion that some people have this because of an underlying autoimmune disease. However, to date, no specific antibody has been found as the cause. This is an active research process and there are at least two centers currently involved in researching and looking for the antibody(s) potentially responsible. Until it's identified no specific treatment can be recommended across the board. Autoimmune diseases can be a beast of their own and as some have found through their own trial and error process of trying different treatments (IVIG, plasmapheresis, various meds etc) that there are substantial risks to these treatments and there are very few people (dysautonomia patients that is) who've had success with these routes--probably in part, due to the fact that, unlike some other autoimmune diseases where they know what antibody to target, POTS does not have an identified antibody to target making the process much riskier and more of a crap shoot.

Until this disorder gets enough research funding and antibodies are identified it will remain a much slower process.

How do you know your POTS was caused by Lyme? Isn't it equally possible that your POTS symptoms are maybe a result of damage done to the body from the antibiotics since you say you had no symptoms of POTS UNTIL you started treating for the Lyme?

You wrote, "The pooling in the extremities, or in my case, the "Hyperadrenaline" type seems to be merely a symptom rather than the true disorder or should I say underlying cause" Pooling in the extremities does not = having hyperadrenaline POTS.

You state, "And just so you all know, my Lyme is a clinical diagnosis which means it didn't show up in my blood. Only about 35% of the people diagnosed with chronic Lyme actually show an antibody in the blood" How do you know you haven't been mis-diagnosed? How can you be confident you actually has lyme disease if no objective data confirms it? Aren't you concerned of a potential misdiagnosis if there is no objective testing to verify the diagnosis?

"the body doesn't recognize the bacteria as foreign as it takes on the "L form" and is ignored by the immune system, so there will be no antibodies made are seen in a blood test" If the body doesn't recognize the bacteria as foreign and the immune system "ignores" it then how is that considered an autoimmune disease? Autoimmune diseases are where the body attacks itself so if the immune system is "ignoring" this then it's not a disease process in which the autoimmune system is responsible.

I certainly hope you find answers and get good treatment. It's worthwhile to pursue any avenue that may bring better health but try not to close yourself off from other explanations or potential sources that have other root causes.

Poohbear,

I have seen 2 LLMD's who both gave me the diagnosis. I have had other bloodwork that is in line with what you find in Lyme patients. For example, I have a low CD57 count, I had a high C4a count, and most importantly, I did test positive for the IGM, IGG bands for Lyme which in my case are #39 <-- the thumbprint marker for Lyme and #41 <-- the tail of the flagella.

I just didn't test pos. for the antibodies, which is what Infectious Disease Dr.'s want to see. It's a huge debate out there with the war on Lyme. It's the IDSA vs. ILADS organizations. Antibiotics didn't cause my pots, because I havn't done them. In fact, I am doing alternative treatment using a Rife machine and I'm also on the Salt/C protocol, none of which could cause POTS.

I don't believe in my case, the POTS is permanent as it keeps changing forms on me. As I said, my shortness of breath on standing is now gone. My blood pressure changes are minimal. Kind of funny, as my resting and seated Blood Pressure has seemed to go up recently to 140's/90's, which is very high for me. I usually run 110's/70's. I just started on Clonidine, an alpha 2 agonist, so I will see how this helps.

With regards to the "L form", I don't think I ever said it was immunosurpressive. What I said is that when tragedy strikes, whether it is Mental or Physical, the immune system weakens and if it was fighting a war against bacteria, it is the perfect opportunity for the bacteria to populate and dominate in the body. This is all theory and I don't say or proclaim any of it is fact. None of us can see this stuff inside our bodies, so it is guess work. Thats all I'm presenting. I am no expert in this stuff. In my case, I have every symptom of neurolyme in line with many others I have met in my journey to get well.

I do think that it would be a huge coincidence that the Lyme and POTS are not related in my case, and this, I have ruled out. POTS obviously doesn't discriminate, even though they say woman are more likely to get it. The Wilkipedia theory I posted is very much in line with what I find and hear from other Cardiologists with regards to Trauma, a Virus, etc.

I'm only here to help and of course seek out help for myself. I post here and on Lymenet.

I will be sure to keep you all updated on my treatment, whether the news is positive or negative. Please take everything I post with a grain of salt. I do tend to post in a "matter of fact" fashion. And I'm sorry if I have mislead anyone by doing so. Most of what I post is from all of the research I have done on Lyme and now POTS, so it's alot of restating in my own words, but should never be taken for face value or as fact.

I'm just theorizing and nothing more. If we don't have a good grip on this, at least for me, the future can look grim. I'm trying to find light at the end of the tunnel so I can have my life back.

TC,

GaryRN

[pearsjon]

isn't what gary said and poohbear and rammie said pretty much all speculation or theories? even in science it is theorized why we have this. seems to me the medical field and all of us here are all postulating theories by extrapolating what is read or theorized in journals. from what i have read, they are no further now then they were in the 50's. the only difference is now it has the word syndrome behind it. whoopee, a syndrome, that very few in the medical field even have heard of.

i don't feel we should dismiss anyone's theories at this point. cause to me everyone is still guessing (theorizing), call it whatever you want.

IMVHO

[yogini]

Firewatcher, I tend to agree with ramakentesh that POTS relates to blood flow and nerve damage - I have read a lot on this topic, and all of the scientific to date evidence points to that. I am not a scientist, but I would guess that, in people with autoimmune conditions, the autoimmune system attacks the nervous system causing POTS.

I know nothing about Lyme, but do think there is a Lyme connection, just based upon posts here. I would guess that lyme damages the nerves. Is Lyme disease an autoimmune disorder? I thought it was bacterial?

[potsgirl]

Gary,

Wow! Thank you for writing such a thought-provoking missive. Everyone has different theories, and your message has brought out some great discussions. This is how we move forward...

Cheers,

Jana

[Guest GaryRN]

I would just like to add one more comment on this whole thing.

A few have spoken about nerve damage. Although the nervous system is taking a beating from whatever the underlying cause is, keep in mind that people do get well from POTS, so you don't have to look at your case as being permanent.

There is obviously miscommunication in the body, almost like having wires crossed. I really don't think we are dealing with permanent nerve damage.

Just my thoughts......

Gary

[firewatcher]

I think that we need to remember that POTS of ANY type is a constellation of symptoms, NOT a diagnosis in itself! It could and probably does have many causes, just like migraines. For one person, weather triggers migraines, for another hormones, and yet another food; the result is the same: a wicked unilateral headache! However, based on the CAUSE, the treatment is different, some respond to triptans, some to calcium channel blockers, some to sleep and some to nothing! POTS is just like this. Some of us have had symptoms for as long as we can remember (possibly genetic) others had triggers either viral or trauma. We all also have OTHER DISORDERS (like EDS or thyroid diseases) that modify our POTS, just as POTS modifies other disorders (thinking of the sleep disorders/narcolepsy poll.) The body is extremely complex with many systems and feedback loops and no doctor can be a master of all these systems! Unfortunately our dysautonomia crosses over so many systems that it takes a team to even diagnose it accurately or treat it! There is NO SIMPLE ANSWER! For some, hopefully most, the blessing of healing or remission or whatever you want to call it will come and you will thank GOD and gradually leave the forum and resume your lives. For others it may progress and get worse, and for many it will wax and wane and symptom treatment will be our only option until a "cause" and "treatment/cure" can be found.

Keep thinking, keep reading, keep connecting those dots...THERE IS NO SUCH THING AS CHAOS! merely an unperceived pattern! I truly believe that with every fiber of my being.