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

[Cort]

Cort submitted a new resource:

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

Dr. David Bell is one of the few doctors who actually identified an outbreak - the Lyndonville Outbreak - of ME/CFS. One of the first doctors to recognize the disease, Dr. Bell treated ME/CFS patients for decades before his retirement in 2011. Dr. Bell served on the federal advisory panel for ME/CFS (CFSAC) and was a board member of the IACFS/ME. He's written several books including "The Doctor's Guide To Chronic Fatigue Syndrome", "A Parents Guide to ME/CFS" and "Cellular Hypoxia and...

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[Snookum96]

Interesting @Cort , is this the update he just sent you?
I wonder if low blood volume has anything to do with blood pooling in POTS. I dont have the mental stamina to read the whole thing in one sitting so it may be in there. I will read the rest when my brain has been recharged!

 

[Cort]

Interesting @Cort , is this the update he just sent you?
I wonder if low blood volume has anything to do with blood pooling in POTS. I dont have the mental stamina to read the whole thing in one sitting so it may be in there. I will read the rest when my brain has been recharged!

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 (???)

 

[fdotx]

Thanks Cort, I saw a cardiologist last year for PVC's and asked him about it. He said mine was normal because my hematocrit was - this explains to me that he wasn't seeing the whole picture. Do you think if someone has CFIDS but no problem standing in lines or dizziness when arising beyond the normal occasional time when getting up too fast, that it's pretty safe to say this isn't an issue with them?

 

[Ginny Dudek]

I am a high functioning CSFer, with Lyme disease. My experience is that when I stand my heart rate will often jump 20+ beats per minute (a sign of POTS) and stays up for 10-15 minutes. I use Fitbit HR and Heart Rate Pro on my phone to track these episodes. I find when I take an electrolyte supplement that my heart rate is more stable. I prefer GU BREW tablets because they are convenient and does not have artificial sweeteners.

 

[Carollynn]

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?

 

[corinne]

Cort submitted a new resource:

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



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wow. I am so glad to hear someone say it...saline IV and sleep. You betcha. I have been getting saline for years and even though the increase in volume gives me energy, I can take a nap after every infusion...unless I infuse too much, then the resulting bathroom visits interfere and I believe the necessary increased heart work needed to push it around can keep me up. Otherwise, one liter...and nighty- night!

 

[Firestormm]

Hi Cort,
I just woke up and haven't checked, but isn't saline used as placebo in the Rituximab trials? If so, and it was effective, then wouldn't it mess up the results somewhat?
I now need to get my head around 'blood volume' - or return to bed - I'm still wrestling with the diagrams
Thanks
Russ

 

[Jiki Bertsch-Betts]

Cort submitted a new resource:

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...

Thank you once again Cort. My symptoms have diminished over the years, but sleep continues to be a big issue and I was not aware of Dr. Bell's research. I fall asleep reading, but as soon as I lie down I start having all sorts of problems.

 

[Cort]

I am a high functioning CSFer, with Lyme disease. My experience is that when I stand my heart rate will often jump 20+ beats per minute (a sign of POTS) and stays up for 10-15 minutes. I use Fitbit HR and Heart Rate Pro on my phone to track these episodes. I find when I take an electrolyte supplement that my heart rate is more stable. I prefer GU BREW tablets because they are convenient and does not have artificial sweeteners.

Thanks for the tip on GU Brew tablets

 

[Cort]

Hi Cort,
I just woke up and haven't checked, but isn't saline used as placebo in the Rituximab trials? If so, and it was effective, then wouldn't it mess up the results somewhat?
I now need to get my head around 'blood volume' - or return to bed - I'm still wrestling with the diagrams
Thanks
Russ

I think it is but it won't because the saline effect is gone very quickly while it typically takes months for the Rituximab to kick in.

 

[Cort]

wow. I am so glad to hear someone say it...saline IV and sleep. You betcha. I have been getting saline for years and even though the increase in volume gives me energy, I can take a nap after every infusion...unless I infuse too much, then the resulting bathroom visits interfere and I believe the necessary increased heart work needed to push it around can keep me up. Otherwise, one liter...and nighty- night!

One liter and nighty-night - I love it

 

[Cort]

Thanks Cort, I saw a cardiologist last year for PVC's and asked him about it. He said mine was normal because my hematocrit was - this explains to me that he wasn't seeing the whole picture. Do you think if someone has CFIDS but no problem standing in lines or dizziness when arising beyond the normal occasional time when getting up too fast, that it's pretty safe to say this isn't an issue with them?

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.

 

[Cort]

Some information on idiopathic hypovolemia - http://www.cortjohnson.org/forums/threads/idiopathic-hypovolemia-low-blood-volume.3076/ - and something else I came across - Systemic Capillary Leak Syndrome - http://www.cortjohnson.org/forums/threads/systemic-capillary-leak-syndrome-another-way-to-relapse.3077/

 

[Karmin]

I have haemochromatosis and have reached the stage of needing venesections. I'm wondering about the advisability of this in view of low blood volume? Would be great to have dr bell's opinion! How high should we let ferritin climb before resorting to venesection? What volume of blood is it safe to take from ME / POTS patients? Will iv saline prevent adverse reaction to reducing blood volume via venesections?

 

[Mellie]

I love how Dr. Bell listens to and learns from his patients. I also love how he embraces the results over just the "normal" treatment and am intrigued with his story of the patient with hypertension.

I have severe ME and POTS. Prior to my illness moving into the severe category, I was a research patient at Vanderbilt and they did a blood volume test. I was the typical adrenergic POTS patient with low blood volume.

 

[Soffipropp]

Aha! How interesting, that might explain why I feel so much better when I'm in the water (a little bathtub makes no difference though) and why I feel better in the summer (I live in the cold country Sweden...).

 

[Zoe]

What if the body recognizes that there is an infection within the blood cells that it cannot effectively fight, and in response, it purposely limits the production of blood in an attempt to limit the spread of the infection. If this were true, the only cure would be to find a way to kill off the infection. This brings us back to the question of why the body was unable to kill the infection in the first place, which means we're back where we started, knowing nothing.

 

[Linda B]

Hi, my brother in law was told to drink tea with every meal to reduce the uptake of iron. Don't know if you have tried that. Good luck.

I have haemochromatosis and have reached the stage of needing venesections. I'm wondering about the advisability of this in view of low blood volume? Would be great to have dr bell's opinion! How high should we let ferritin climb before resorting to venesection? What volume of blood is it safe to take from ME / POTS patients? Will iv saline prevent adverse reaction to reducing blood volume via venesections?

 

[gnee]

I had chronic low blood volume, as a child, actually even as an adult. Along with POTS, pain, headaches, violent nosebleeds, dangerous infections, failure to thrive, ect. As an adult I
developed various autoimmune diseases, about four years ago I was finally diagnosed with pernicious anemia. with frequent injections and all the supporting supliments many of the symptoms are gone or much improved, unfortunately because it took so long to diagnose I have nerve damage in the spinal cord. I do have me/cfs also as well as thyroid disease.