Resource Dr. David Bell on Low Blood Volume in Chronic Fatigue Syndrome

[Katie]

It's one of them. The second will appear tomorrow.
I think it does. I think the increased heart rate is an overaction to reduced blood volume in the heart and brain (???)

If I remember my patho-physiology correctly: when blood volume drops the heart beats faster to get O2 infused blood to the major organs like the heart, lungs, brain etc. When a person is supine-lying down the blood is relatively even throughout the body, but when they sit or stand the blood drops rapidly to the legs and feet. The blood has been re-directed when you stand up. That's why you get dizziness or faint and why the heart beats so fast.
Sometimes increasing sodium (Na+) in the body, like with an infusion of saline, increasing salt intake and drinking gatorade will help as the sodium in the table salt, saline infusion or the electrolytes (Sodium or Na+ are electrolytes) in the gatorade draws fluid into the blood vessels which increases blood volume.
It's a fine balance (homeostasis), usually, but people with POTS and ME don't have that balance of electrolytes which can lead to high BP, low BP, low blood volume and high heart rates. We are a mess inside.

 

[GratefulWarrior]

Cort submitted a new resource:
Thank you Cort and Dr. Bell.
I was told by a ND who viewed my rbc s under a microscope that my red blood cells were also not shaped properly. She explained that this meant they couldnt carry oxygen well. Has anyone else been told this? So in addition to low blood volume , the rbc s that i/we actually do have in low blood volume do not even function well. Tried hyperbaric chamber treatment for years to help halt/ reverse(?) this.

Dr. David Bell on Blood Volume in Chronic Fatigue Syndrome - What it is, how to test for it and treatment anecdotes



Read more about this resource...

 

[GratefulWarrior]

Sorry, i don't know why my replies keep embedding in the gray area. Apologies.

 

[GratefulWarrior]

If I remember my patho-physiology correctly: when blood volume drops the heart beats faster to get O2 infused blood to the major organs like the heart, lungs, brain etc. When a person is supine-lying down the blood is relatively even throughout the body, but when they sit or stand the blood drops rapidly to the legs and feet. The blood has been re-directed when you stand up. That's why you get dizziness or faint and why the heart beats so fast.
Sometimes increasing sodium (Na+) in the body, like with an infusion of saline, increasing salt intake and drinking gatorade will help as the sodium in the table salt, saline infusion or the electrolytes (Sodium or Na+ are electrolytes) in the gatorade draws fluid into the blood vessels which increases blood volume.
It's a fine balance (homeostasis), usually, but people with POTS and ME don't have that balance of electrolytes which can lead to high BP, low BP, low blood volume and high heart rates. We are a mess inside.

I read that sea salt is best for oral intake to help with the balance of Na+ and Potassium. Watch magnesium too in m.e. Mg, K and Ca need to be watched in FM, m.e./cfs too post op after anesthesia. There are published rare research findings on this. I read them in 2010 before surgery. Mg was so low post op i had to have several iv replacements of iv magnesium post op. The surgeon was glad i showed her the research on this because they usually don't check magnesium along with the other usual electrolytes and renal labs , etc routine post op.

 

[Tricia Watkins]

I've been having weekly IV-saline infusions (1 liter) for a year. I brought studies of IV-saline for ME/CFS to my GP and noted that since it's an FDA-approved treatment for POTS and I had fainted in a tilt-table test in 2007 I would qualify for coverage through my insurance (just an HMO, not PPO), and indeed it is on that basis that I have been able to continue with them. The saline does help the POTS, and most notably, heat intolerance. Heat is still hard, but not as hard. I spend about 3 hours at an infusion center nearby once/week, and usually have a great nap through much of it. I have to have kidney function measured through blood tests every three months in order to continue the Rx.

Something I've wondered about with low blood volume is to what is the body responding to make both less red blood cells and less plasma? Red blood cells are made by the bone marrow, and many viruses implicated in ME/CFS can in time create lymphomas which are rooted in bone marrow--so that dysfunction kind of makes sense for us. The plasma, as I understand it, as made by the adrenal system. So how does something impact bone marrow and adrenals seemingly equally?

Mitochondrial dysfunction or low numbers of mitochondria could impact both of these. Mitochondria produce pregnenolone which becomes aldosterone further down the track and also mitochondria produce ATP. A lack of ATP production means less oxygen needed and thus less haemoglobin needed to transport it.

 

[susanna]

Great piece by Dr Bell. I miss him so much!
An easy way to 'infer' low blood volume may be to have an echocardiograph, which I did some years ago. The report said the diameter of the inferior vena cava was narrowed. Low blood volume was inferred from this. Demonstrates Dr Bell statement about the narrowing of blood vessels.
Earlier in my ME I tolerated IV's well (the purpose was to infuse antibiotics) but when I had one later I felt heavy and tingling afterward. As he says, maybe the blood vessels had narrowed too much by then. He makes so much sense to me!

 

[fdotx]

My guess is that most of us whether we have POTS or not have problems with blood volume. I think a good test would be Dr. Bells home intolerance test - check out the orthostatic intolerance section, although I must say that I apparently passed a tilt test and so did my twin brother (without ME/CFS) but my symptoms zoomed and his did not... If you were ask me to bend up and down several times I would be in bad shape.

My guess is that proper blood delivery is probably an issue one way or another for many of us.

I'm really interested in Dr. Bell's ideas on small blood vessel diameter...You know Fluge and Mella have loamed onto blood vessel problems as well. I imagine the answer will be complex but that they are going to figure in this disease.

Thanks Cort - I too think issues will be found with small blood vessels.

 

[tatt]

I was told I didnt have a problem with orthostatic intolerance when I had no tests (unless you count standing up from a chair once without getting dizzy, other times I might). Dont think I have a serious problem but I read lying down

I suspect adrenaline is bad for me (although I haven't had panic attacks) interesting to see Dr Bell saying that it can be.

The saline used a rituximab control would possibly be a smaller volume - but it may be worth feeding back to the researchers the possibility of their control group improving on saline.

 

[Cort]

I was told I didnt have a problem with orthostatic intolerance when I had no tests (unless you count standing up from a chair once without getting dizzy, other times I might). Dont think I have a serious problem but I read lying down

I suspect adrenaline is bad for me (although I haven't had panic attacks) interesting to see Dr Bell saying that it can be.

The saline used a rituximab control would possibly be a smaller volume - but it may be worth feeding back to the researchers the possibility of their control group improving on saline.

The effects of the saline are going to wash out quickly - within a day or so while the improvements on Rituximab can take months after the infusion to show up.

I think the problems with OI can be subtle but are still present. My results on an tilt table test were OK but I felt horrible. Likewise I don't faint and don't feel dizzy often but if I have to go and up down much boy do I quickly have problems.

 

[ladybug64]

Many of us take and technically pass tilt tests even though we feel terrible while taking them.

How many of you tested positive for the Protomyxzoa parasite? That parasite is known to clog up veins which would explain the constricted blood vessels. It could be the cause of the reduced blood volume we experience , as clogged veins impede blood flow. It makes sense then, that the body would have to work extra hard to get the smaller amount of blood to circulate. I think what they should be testing us for is a venogram, not a tilt test.

Has anyone had a venogram done and found their veins to be occluded? Anyone had the TVAM procedure done to unclog veins? If so was it successful? Thanks in advance for your replies.

 

[Issie]

In response to ladybug and the protomyzoa rheumatica - I'm probably one of Dr Frys loudest patients in trying to get this message out. I do think this may be a huge part of the problem. But that being said, bottom line is autoimmune and it not working properly to keep the protozoa in check. We have to work on it from that angle. Work on any co infections and get those under control. And try to keep cytokines and inflammation at bay. The kill off of these pathogens causes major cytokines response.

Unfortunately, insurance doesn't cover the radiology group that does the vein testing. I'm looking in to it. But I'm not sure I would do the surgery to unclog the veins, as that would be a temporary fix. It wouldn't stop it from happening again. But for some, a temporary fix may be worth it. It depends on how clogged they are. I would rather do that and not have a stroke or heart attack. But, if i can unclog them by eliminating biofilm and the pathogens it houses - that would be more of a "fix" rather than a temporary "bandaid". But, By then with diet change and aggressive autoimmune and elimination therapies - it may buy you enough time to get the body to running more smoothly with an ability to effectively detect these pathogens.

We are trying a different antibiotic on me right now. What I was on for a little over 2 years stopped working. This one is creating a major herx reaction. So hopefully we are on to something. Once you have this, there is no known way to completely eliminate it. At least, not yet. It's a managing process. Diet is the biggest key to management and autoimmune function and elimination of inflammation.

Issie

 

[Snookum96]

Following up on my earlier post, I had my tilt table test last week and it sucked. I felt horrible.

But the doctor was awesome! He wasn't just knowledgeable about all things CFS (he even used the term SEID) and pots (among other things), but he was nice. What a revelation!!

The test showed I have POTS. I told the doctor about Dr. bells home test and the low pulse pressure readings I got. That didn't show up much in the test but he thinks that bp is causing my symptoms more than hr. So even though the test didn't show my bp changes he took my word for it. This was a new experience for me!

I put this in detail in my blog but I think I know why my bp changes didn't happen but I will summarize here. I think I kind of cheated. I realized toward the end of the test that because the straps weren't too tight I was pushing my head and upper back into the table and pushing my hips out forward to support my body so I wasn't really standing as upright as I could have been. And obviously the test didn't have me free standing so that could be a factor as well.

 

[Cort]

In response to ladybug and the protomyzoa rehumatica - I'm probably one of Dr Frys loudest patients in trying to get this message out. I do think this may be a huge part of the problem. But that being said, bottom line is autoimmune and it not working properly to keep the protozoa in check. We have to work on it from that angle. Work on any co infections and get those under control. And try to keep cytokines and inflammation at bay. The kill off of these pathogens causes major cytokines response.

Unfortunately, insurance doesn't cover the radiology group that does the vein testing. I'm looking in to it. But I'm not sure I would do the surgery to unclog the veins, as that would be a temporary fix. It wouldn't stop it from happening again. But for some, a temporary fix may be worth it. It depends on how clogged they are. I would rather do that and not have a stroke or heart attack. But, if i can unclog them by elimunating biofilm and the pathogens it houses - that would be more of a "fix" rather than a temporary "bandaid". But, By then with diet change and aggressive autoimmune and elimination therapies - it may buy you enough time to get the body to running more smoothly with an ability to effectively detect these pathogens.

We are trying a different antibiotic on me right now. What I was on for a little over 2 years stopped working. This one is creating a major herx reaction. So hopefully we are on to something. Once you have this, there is no known way to completely eliminate it. At least, not yet. It's a managing process. Diet is the biggest key to management and autoimmune function and elimination of inflammation.

Issie

Thanks Issie - good luck!

 

[ladybug64]

In response to ladybug and the protomyzoa rehumatica - I'm probably one of Dr Frys loudest patients in trying to get this message out. I do think this may be a huge part of the problem. But that being said, bottom line is autoimmune and it not working properly to keep the protozoa in check. We have to work on it from that angle. Work on any co infections and get those under control. And try to keep cytokines and inflammation at bay. The kill off of these pathogens causes major cytokines response.

Unfortunately, insurance doesn't cover the radiology group that does the vein testing. I'm looking in to it. But I'm not sure I would do the surgery to unclog the veins, as that would be a temporary fix. It wouldn't stop it from happening again. But for some, a temporary fix may be worth it. It depends on how clogged they are. I would rather do that and not have a stroke or heart attack. But, if i can unclog them by elimunating biofilm and the pathogens it houses - that would be more of a "fix" rather than a temporary "bandaid". But, By then with diet change and aggressive autoimmune and elimination therapies - it may buy you enough time to get the body to running more smoothly with an ability to effectively detect these pathogens.

We are trying a different antibiotic on me right now. What I was on for a little over 2 years stopped working. This one is creating a major herx reaction. So hopefully we are on to something. Once you have this, there is no known way to completely eliminate it. At least, not yet. It's a managing process. Diet is the biggest key to management and autoimmune function and elimination of inflammation.

Issie

 

[ladybug64]

Issie, would you mind sharing which antibiotic was it that you had such good result with? Thank you!

 

[Issie]

Issie, would you mind sharing which antibiotic was it that you had such good result with? Thank you!

I used doxycycoline and rotated with Arteminsin and also use lumberkinase to break down biofilm. Timing is important when to use what. The lumberkinase has to be at least two hours or more before either antibiotic or antimalarialal herb. Then at a different time of the day use good quality probiotocs.

Dr Fry has found that fat keeps these pathogens very happy. So we have to do a lower fat diet. Also, becoming a whole food vegan is strongly advised. He has had some be able to control their illness with diet alone. Also, magnesium causes biofilm that houses the protozoa, virus and bacteria to be stronger. We have to break down the biofilm for the med and immune system to be able to get to what we don't want in our body. So reading supplement labels and avoiding Epsom salt baths etc. Is very important. One of my friends was having horrible pain from her illness and was using Epsom baths - they made her so much worse.

Some things that help my pain and herxing is to use the spices - turmeric and ginger. Make a tea or coffee and put them in it. I use 1/4 to 1/2 tea of each. Not to close to bed as it opens veins and gives energy. Helps pain a lot!!! One warning is they can thin your blood so have to get off a few weeks before surgery. Some POTS people say turmeric makes them worse, it will dilate your veins. So you need to know your subset type. It also helps some with MCAS. So that's another benefit to me.

I think DIET is the biggest key here. I can tell a huge difference if I splurge on something and have too much fat. I have periods, when I'm not in a flare, that my POTS is under really good control. I have a life now. I'm sooooo much better.

Issie

 

[Issie]

Following up on my earlier post, I had my tilt table test last week and it sucked. I felt horrible.

But the doctor was awesome! He wasn't just knowledgeable about all things CFS (he even used the term SEID) and pots (among other things), but he was nice. What a revelation!!

The test showed I have POTS. I told the doctor about Dr. bells home test and the low pulse pressure readings I got. That didn't show up much in the test but he thinks that bp is causing my symptoms more than hr. So even though the test didn't show my bp changes he took my word for it. This was a new experience for me!

I put this in detail in my blog but I think I know why my bp changes didn't happen but I will summarize here. I think I kind of cheated. I realized toward the end of the test that because the straps weren't too tight I was pushing my head and upper back into the table and pushing my hips out forward to support my body so I wasn't really standing as upright as I could have been. And obviously the test didn't have me free standing so that could be a factor as well.

BP isn't what is used to determine POTS. Heart rate is. Many have low BP. And the rarer subset types - like me - have higher BP. There usually is a drop at some point. But the main thing is the increase in pulse/heart rate with upright posture. It has to go up at least 30 beats or above 120. The longer you stand still, without flexing muscles or moving, the worse it gets. The peripheral limbs are not moving the blood like they should and the heart starts working over time to compensate. That's why some POTS people have a lower BP when moving - the movement helps the legs to flex and pump better. You will see us fidgeting while standing or sitting - unconsciously we are moving to help out bodies blood flow and oxygen.

As Dr Bell mentioned some of us has liable BP. That's where the top and bottom numbers are. Close together. The heart may be beating fast and not able to slow down and rest. This is dangerous and with some, we may require a pacemaker. I've met several that have one. Some docs make the mistake of burning the sinus node of the heart to try to balance the beat. But those with POTS, none that I have heard of, do well with this. That's one thing I've been told not to allow - from some that have had it. The good thing, it doesn't appear that there is really a heart problem. It's just our heart is compensating for our bodies inability to get blood up to our upper bodies quickly and effectively. Some of us do have some mitral valve issues, however.

Issie

 

[Snookum96]

Hi @Issie
Sorry if I was unclear in my post.

I do understand how pots is measured as opposed to nmh.

Before the test, I thought I had issues more with low pulse pressure, not Heart rate, based on the home test because my bp got to around 94/81 before the bp monitor stopped working. I never realized that this can be dangerous. I tried to do some research on low pulse pressure but couldn't find much online. I guess it's yet another affliction we get that's poorly understood!

So I was kind of surprised that the tilt didn't show the Pulse pressure going as low as it has at home. Perhaps because I was compensating.

I'm definitely worst standing still. Walking is easier. I fidget as well if I have to be standing, that sounds like you described.

Thanks for the explanation, I've always wondered why standing still is harder but have never had it explained before!

 

[AnneVA]

It's one of them. The second will appear tomorrow.
I think it does. I think the increased heart rate is an overaction to reduced blood volume in the heart and brain (???)

If there is pooling in the hands and feet, then the heart isn't getting what it deems an acceptable volume of blood pumping thru it. So it kicks up the heart rate in an effort to get oxygenated blood to the brain which is yelling that it isn't getting enough O2.

My dd was dx'ed with neurally mediated hypotension... low blood pressure when she changed position. When her systolic dipped below 100 and her diastolic dipped below 60, she started becoming symptomatic. Then her heart rate would go down, too, into the 50's and at times the mid 40's. 87/51 with a hr of 48 = Miserable. All of that resolved when the dr. started her on regular IV saline infusions.

And it helped ease the POTS symptoms, now without the large jump in the sitting to standing heart rate increase. The rates prior to saline might jump to 120 to 150 when going to standing but with saline usually doesn't go above 110.

The saline benefits usually last about 36 hours according to her POTS dr. who is a nephrologist. 2 years ago, she was doing saline infusions every other day. Last year, averaged 3x/wk. This year she is trying to every 4 to 7 days with mixed results.

I've been told that with connective tissue disorders such as Ehlers Danlos, the tissue compartments are leaky, can't hold onto fluid and that the veins can be stretchy and not move the blood back up towards the heart. Now, I've recently read that newer studies don't show that to be the case. I'm confused. Does anyone know of citations for those new studies.

Never heard of Dr. Bell but he is a rare one to promote regular saline. I'm going to be digging into his material that you've posted here, Cort. thanks for doing that.

 

[andreamarie]

I am being treated for preload failure by a cardiopulmary specialist who see exercise intolerant patients. I am also being seen by a neurologist for a chronic neuropathic pain problem. The cardio doc put me on salt tablets and I'm to drink a lot of fluid. I already was because I have Sjogren's syndrome and I'm always thirsty. I was told to stop my b/p med but that didn't work. My b/p drops intermititly so it's a balancing act.

The neuro ordered a tilt table test. I don't have P.O.T.S. but have O.I. The O.I. is intermittent. I have a balancing act because I have hypertension. I also have a fast heart rate and an irregular pulse. The neuro says the O.I. is a result of small fiber polyneuropathy. He also says my CFS and Sjogren's are also results of small fiber polyneuropathy.

The two doctors do not get along.

I've been concerned about an irregular pulse and high heart rate. I'm having a 24 hr holter monitor test.