Discussing POTS with a Medical Researcher

[ramakentesh]

I was lucky enough to meet a senior medical researcher at a work function recently. He was involved in studies on autoimmune conditions and their causes for many years, and although he has moved on into other fields, was still abreast of recent developments in that area.

When i talked to him about POTS - which he had never heard of at all - and its many symptoms, he was particularly interested in the relating hypovolumia that this condition and CFS also shares.

In his opinion, there could be literally hundreds of conditions that could causes this, most of them being unknown - and that the hypovolumia would be a compensatory response to any of these numerous conditions. He could see many biochemical pathways that could be influencing this phenomenon. On one hand you might have dietary, viral or genetic problems that are causing your kidneys to excrete too much water. On the other hand the renal system may be acting to compensate for a problem elsewhere. For instance our arteries have stretch detecting receptors that act along with many other systems to regulate blood volume and hence pressure. I dont know where the current research is on these receptors but I'll bet we dont totally know how they operate. It is quite likely that they react to the enzymes produced by the surrounding tissue when under stress. If you had a defect in these cells making your vessels weak then your low blood volume would be a very desirable compensatory mechanism that the body has utilised to keep you alive.

In all he was very worried about people taking meds to increase blood volume if there is a biological problem that is occuring that is making or bodies lower blood volume to compensate.

The most interesting point he made was that when he was involved in this area, the current thinking was that many of these mysterious conditions might be viral in origin. He was told that there were currently about 40 virus known to have been integrated into the DNA of the majority of us. He explained that Researchers believe that in the end we will find out that their numbers are in the 1000s. Under the appropriate conditions these virus can activate and manipulate their host into reproducing them.

This was what they were and still are investigating with a huge number of health problems.

[MightyMouse]

I believe the stretch receptors you're speaking of are called baroceptors also called barorceptors.

Nina

[steph37822]

oops

[Gena]

I'm curious if this researcher mentioned what "biological problems" could be occuring that would "make our bodies lower blood volume to compensate?"

It seems that lowering blood volume in a person starting out with normal blood volume would only serve to be detrimental to the body, so I wonder how this response from the body would actually be beneficial in any way. Low blood volume causes so many bad symptoms, I don't see any good in it?? Just curious if the researcher elaborated on this at all?

I know you're just relaying info here, so don't take these questions personally.

[MomtoGiuliana]

It sounds like this researcher was talking off the cuff--and very theoretically. In addition, he may not understand that hypovolemia is so debilitating.

I am trying to think in what other cases the body malfunctions and the malfunction is actually believed to be protective of health. That's one question I would ask the researcher in response to his conjecture.

Katherine

[Ernie]

I am really glad to be taking salt tablets because I have more muscle strenght and have less presyncopal events. Also, when I faint I don't need to go to the ER to get an IV. I know salt is not good on the kidneys but I have many fall injuries so if I have to choose between long term effect of salt and hurting myself when I fall I will choose the salt.

Ernie

[Guest tearose]

Wow everyone has such different experiences! I am glad we have this opportunity to brainstorm with each other!

Here's my experience...I have swelling all the time in my left arm and on exertion in my left calf and foot, which came as the "permanent damage from late treated lyme". For this, I must limit my sodium intake and I am supposed to keep the foot of my bed elevated higher than my heart. (As we know the opposite is the treatment for POTS). This swelling is called lymphedema and it came upon me at the same time I had my first pots symptoms. I had this fancy test at Mayo, the thermo-regulatory sweat test which documented the small fiber damage in both my legs, and in my torso. These baroreceptor reflexes Nina mentions are in our legs.

(I did do a lot of international flights prior to the lyme disease so I may have had some baroreflex damage during that high altitude flying time.)

It was explained to me that the lyme spirochete in my arm and calf was attacked by own immune system and in so doing caused the damage to my lymphatic system. My body was actually protecting the rest of me even at the cost of permanent damage to my arm and calf. It also pushed my small fibre receptors past what they could manage as well.

Not to further complicate things but this is my peculiar body...

What I also find interesting is that my blood volume when low , keeps me from lymphatic swelling. When my blood volume was elevated after two erythropotin (sp) injections I developed increased lymphatic swelling, a horrible headache and had developed small pericardial effusion as seen on echocardiograms.

I do accept the fact that I have several things going on that make my case not clear cut but the bottom line for me is... I think my body "fights" to find an equilibrium that surpases the current medical ability/technology to diagnose or treat.

There is just so much information out there that still is incomplete that we truly can not know what will work to even treat the "average bear" cause there really is no average bear!!!

Sorry, one more point...We must remind ourselves that every treatment or lack of treatment has a consequence. We must help each other to educate ourselves and then make the best decision for our body and move on. No doctor, no scientist, no one will ever be able to guarantee any treatment!

My son had a reaction to general anesthesia that nearly killed him when he was four. He went on to research this reaction as a high school student and found that there is a muscle disorder that can contribute to this deadly cascade of events during general anesthesia. Our doctors do not discuss this with us, however, these deadly side effects also happen when people take STATIN drugs. The very drug that last week was in the news being advocated to be taken over the counter!!!! There is just so very much we are not told!!!

Why do so few people know how deadly statin drugs are?

You know the answer...pharmaceutical companies....

Always ask, Who is doing this research? What do they have to gain? Why is this treatment being prescribed? What are all the side effect? What will it do to my body? What may it make worse?

my goodness, I guess this blizzard gave me a flurry of energy, hope I didn't wear you out!

off the soap box, tearose

[MomtoGiuliana]

Tearose--great points about skepticism regarding research and treatments. It is hard for us lay folks to effectively analyze research, and we often have to rely on the help of the medical community--yet, politics also plays a role. Also, very interesting points regarding your specific condition and how increasing your blood volume impacts it.

Ernie--salt intake bad for kidneys? Can you point to some research showing this? Or, did a doctor tell you this? This seems to be a common belief--but when I ask my doctors about it, they tell me it is not going to be damaging to my kidneys to take large amounts of salt.

Thanks, Katherine

[ramakentesh]

I am surprised by some these responses. And maybe the way i wrote my post has caused some of these problems. I was just chatting with this guy out of the blue and wasnt suggesting anyone should take anything he said as gospel - i just thought people might be interested in his unpaid for opinion during a down-to-earth discussion at a party. He raised some points that i hadnt considered, so i thought it would be ok to post this info. Whether any of it is valid or not, i thought it might interest someone.

I was talking to this guy for some time, describing my symptoms - and i have hypovolumia and diagnosed POTS and have had for a year and a half. He understood entirely that low blood volume would have in his words an 'incredibly detrimental affect' on the living standard of any person and also sympathised greatly with the fact that it would be particularly hard to diagnose this kind of condition. He also talked about hypovolumic shock and what happens if blood volume goes down in a rapid timeframe.

On that note, we both agreed that taking salt tablets/florinef/other substances that increase blood volume, would significantly improve the living standard of any person with this problem. What he said was that if the low blood volume was a body response to things like an unknown cardiac, kidney, or artery contsricting dysfunction, then increasing blood volume might put a person at danger of further health problems. This was assuming that the reason for hypovolumia in POTS patients is unknown, and to my understanding there isnt any definitive answer as to what causes this in POTS/CFS patients.

I explained that most people take these agents and lead healthy lives for many years without detriment and he suggested that perhaps the kidneys are the problem in regulating blood volume so maybe there is no danger in taking blood-volume-increasing agents.

What he was more suggesting was that hypovolumia could be the answer to what might be causing these conditions in the first place - unless there is some demonstratable problem with renin levels being produced by the kidneys, then the reduced blood volume might be to compensate for other problems. WHen you consider that cardiac and kidney disease now days often require diaretics to lower blood volume to reduce strain on these organs.

[Guest tearose]

ramakentesh, I think it is an excellent thread! You make us think and consider things and so the thread is a value of increasing importance. Sometimes I find that what I felt or understood at the beginning of a topic changes greatly by the end! I enjoy the development!

It made me take things further...

Anyway, I was thinking that in the future the real treatment for all conditions and bears and kittens too, will maybe look like this:

They take your DNA, blood type, metabolic type, and put you in some cylinder to measure/evaluate your body fat, muscle, bone and skin...and then create a personalized medication to constantly treat your medical illness/ malady. I picture a non-alergenic patch like instrument sleekly mounted on our waist that would deliver our medicine, vitamins, minerals or supplements!

thank you for making me exercise my brain! tearose

[briarrose]

Thank you for the post it was interesting reading and everyone had great responses.

I will continue to take my Epogen as NO doctor has offered to eliminate by testing other possibilities for my continued hypovolemia problems.