Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

[Pyrrhus]

Many people have assumed that the positive effect of saline infusions is due to an increase in blood volume.

What does this mean?

Basically, it means that the saline infusions increase the amount of circulating blood in the body, which compensates for the impaired circulation due to the dysautonomic control of blood vessels.

What does that mean?

Take the case of basic orthostatic intolerance.

1. When a healthy person stands up, gravity will pull their blood down, but their autonomic system constricts the veins in the legs to force blood upwards against the force of gravity, ensuring an uninterrupted blood flow to the brain.
2. But when this autonomic response fails, the veins in the legs will not constrict, and gravity will pull blood down into the legs, depriving the brain of sufficient blood flow. This form of dysautonomia is called orthostatic intolerance.
3. If someone has orthostatic intolerance, but has been receiving saline infusions, they may have a larger amount of circulating blood. When they stand up, gravity will pull blood down into the legs, but there will still be enough circulating blood to ensure an uninterrupted flow to the brain.

EDIT:

To better understand how increasing blood volume can alleviate orthostatic intolerance, see:

Orthostatic Intolerance Basics: Dysautonomia of Blood Vessels, Low Blood Volume, and Baroreflexes
https://forums.phoenixrising.me/thr...sels-low-blood-volume-and-baroreflexes.86445/

 

[Pyrrhus]

There was a classic publication in 1998 that found that ME/cfs patients may have reduced blood volume:

Circulating Blood Volume in Chronic Fatigue Syndrome (Streeten and Bell, 1998)
The following link is only visible to Phoenix Rising members with at least 100 posts.
https://forums.phoenixrising.me/threads/streeten-1998-circulating-blood-volume-in-cfs.10423/

Excerpt:

The recent description of delayed orthostatic hypotension in patients with CFS, and previous findings of reduced red blood cell (RBC) mass in other patients with orthostatic hypotension not known to have CFS, led us to measure RBC mass and plasma volume in 19 individuals (15 female, four male) with well characterized, severe CFS.
[...]
Plasma volume was subnormal in 10 (52.6%) patients and total blood volume was below normal in 12 (63.2%).

 

[Pyrrhus]

There was a classic publication in 1998 that found that ME/cfs patients may have reduced blood volume:

Circulating Blood Volume in Chronic Fatigue Syndrome (Streeten and Bell, 1998)
The following link is only visible to Phoenix Rising members with at least 100 posts.
https://forums.phoenixrising.me/threads/streeten-1998-circulating-blood-volume-in-cfs.10423/

And here are other papers that reported low blood volume, from a different thread:

In 2015 David Bell gave a talk regarding Blood Volume In ME
www.investinme.org/Documents/Research/David%20Bell%20Blood%20Volume%20in%20ME%20Sep%2015.pdf
He explained the difference between anemia and low blood volume. He treated patients with IV saline. He discussed Streeten's study of MAST (Military Anti-Shock Trousers) trousers on the orthostatic intolerance. This transcript of his talk is much easier to read than any published study.

Chronic fatigue syndrome: Illness severity, sedentary lifestyle, blood volume and evidence of diminished cardiac function
May 2009
Barry E. HURWITZ, Virginia T. CORYELL, Meela PARKER, Pedro MARTIN,
Arthur LAPERRIERE, Nancy G. KLIMAS, George N. SFAKIANAKIS and Martin S. BILSKER
http://sci-hub.tw/10.1042/CS20090055 (full text)

Blood Volume Status in ME/CFS Correlates With the Presence or Absence of Orthostatic Symptoms: Preliminary Results
Nov 2018
C. (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser
https://www.frontiersin.org/articles/10.3389/fped.2018.00352/full

 

[Pyrrhus]

The author of this paper, Todd Davenport, recently gave an interview that you can watch:

Todd Davenport talks about ME/cfs & PEM with LongCovidPhysio
https://forums.phoenixrising.me/thr...-about-me-cfs-pem-with-longcovidphysio.83025/

 

[panckage]

Many people have assumed that the positive effect of saline infusions is due to an increase in blood volume.

What does this mean?

Basically, it means that the saline infusions increase the amount of circulating blood in the body, which compensates for the impaired circulation due to the dysautonomic control of blood vessels.

What does that mean?

Take the case of basic orthostatic intolerance.

1. When a healthy person stands up, gravity will pull their blood down, but their autonomic system constricts the veins in the legs to force blood upwards against the force of gravity, ensuring an uninterrupted blood flow to the brain.
2. But when this autonomic response fails, the veins in the legs will not constrict, and gravity will pull blood down into the legs, depriving the brain of sufficient blood flow. This form of dysautonomia is called orthostatic intolerance.
3. If someone has orthostatic intolerance, but has been receiving saline infusions, they may have a larger amount of circulating blood. When they stand up, gravity will pull blood down into the legs, but there will still be enough circulating blood to ensure an uninterrupted flow to the brain.

I take cold showers which helps POTS symptoms, which i assume works in a similar way . The cold water closes up arteries close to the skin, IOW the arterial volume decreases while the blood volume remains constant. This should have the same effect as increasing blood volume while keeping arterial volume constant.

I have however, never seen this quantified and I'm not sure if the arteries near the skin contain enough volume for the change to matter. Taking into account volume vs radius makes me think think that it would probably not. But again I would love to see a way to quantify this.

If someone can't handle cold showers just go in hot water until you are nice and warm (or as I do uncomfortably hot). That way the cold water after won't lead to a significant temperature drop.

 

[Pyrrhus]

The cold water closes up arteries close to the skin, IOW the arterial volume decreases while the blood volume remains constant. This should have the same effect as increasing blood volume while keeping arterial volume constant.

That makes perfect sense. Your total blood volume remains constant, but the blood that was close to the skin is now available to the brain if you stand up.

I have however, never seen this quantified and I'm not sure if the arteries near the skin contain enough volume for the change to matter. Taking into account volume vs radius makes me think think that it would probably not.

My guess is that they do contain enough volume to matter. The autonomic cold response constricts not just the small arteries closest to the skin, it also constricts the larger arteries that feed into these small arteries near the skin.

 

[Tella]

I have severe ME and have been receiving 2L of saline per week for just over 12 months. It has improved my orthostatic tolerance, cognitive function and energy envelope. I have not fainted since starting. Before starting I was on a slow constant decline in functioning. It has helped me more then any supplement I have taken.

Before the saline, I usually had cold lips and blue tinged fingers and struggled to sit for even one minute. I could not stand, I had to transfer bent over and pee with my head between my knees. I had to have cool flat baths. I was short of breath whenever upright.

Now the first 5 days after an infusion I can stand long enough to wash my hands. I can sit upright to 45 degress (with legs up).

This has been a magnificent benefit to my mental health as I can go for short walks in a tilt in space power chair now and be out of bed.

The first infusion I felt what I can only describe as high. My lips felt warm again and my vision became saturated with colour. My head felt buzzed and I could think much more clearly - but really I was just getting blood to my head and damn that feels good.

I still have severe POTS and ME. But the improvement in my quality of life and ability to get out of bed has allowed me to be a part of the world. Best of all is I have improved a little instead of continued to get worse. I believe I would be bed bound now without the infusions.

Hey do u still havr them and how often?

 

[Marylib]

I love IV saline. I love a nutritional IV with saline even more. There's a remarkable difference to what I experience when I compare the two, but the nutritional IV's a very expensive - from a naturopathic physician in my case.

 

[Tella]

I love IV saline. I love a nutritional IV with saline even more. There's a remarkable difference to what I experience when I compare the two, but the nutritional IV's a very expensive - from a naturopathic physician in my case.

how often do u get them and which one helps with what please?

 

[Marylib]

I get saline as often as possible. That helps me stand up without tachycardia. (POTS). I had maybe 3 nutritional IV's and they woke me up. The effect only lasted as long as the nutrients stayed in my system. I fell deliciously asleep during the first one. (Doc said 'that would be the magnesium sulfate..') I was in quite a severe state in those days and at one point the doc took my vitals and asked if I was sure I was still actually alive. My theory is that bypassing digestion corrects whatever metabolic problem is happening. But I have no way to know and not enough money to get more. Once I did wake up with a headache after one but a small price to pay for feeling alive like that. I also kinda woke up when I took the shingles dose of acyclovir for 10 days or so. I guess that is 4 grams a day? But that stuff is hard on the kidneys and liver after awhile - so I am told. Shingles is hell, but at least I had a chance to experiment with higher dose antivirals.

 

[Marylib]

how often do u get them and which one helps with what please?

I should say that eventually I got a port a cath implanted for the saline. My veins gave out. They only get plumped up after the saline and it was getting ridiculous.

 

[Tella]

I get saline as often as possible. That helps me stand up without tachycardia. (POTS). I had maybe 3 nutritional IV's and they woke me up. The effect only lasted as long as the nutrients stayed in my system. I fell deliciously asleep during the first one. (Doc said 'that would be the magnesium sulfate..') I was in quite a severe state in those days and at one point the doc took my vitals and asked if I was sure I was still actually alive. My theory is that bypassing digestion corrects whatever metabolic problem is happening. But I have no way to know and not enough money to get more. Once I did wake up with a headache after one but a small price to pay for feeling alive like that. I also kinda woke up when I took the shingles dose of acyclovir for 10 days or so. I guess that is 4 grams a day? But that stuff is hard on the kidneys and liver after awhile - so I am told. Shingles is hell, but at least I had a chance to experiment with higher dose antivirals.

how severe were and are you? I want to run trial of a few salines for a few weeks which im sure will help pots
can't they use vein in the hand too?
did vitamin ivs make u much much better than normal saline?
was it painful to insert the port? if I have an iv once a week can my veins get away with it? there a few sites they can use ?

 

[frozenborderline]

METHODS:The patient received 1 L of 0.9% IV saline through a central line for a total of 675 days. Single CPETs were completed periodically to assess the effect of treatment on cardiopulmonary function at peak exertion and ventilatory anaerobic threshold (VAT). An open-ended symptom questionnaire was used to assess subjective responses to CPET and self-reported recovery time.

Interesting study but many me/cfs docs order two liters run quickly, and some research has suggested that's how short our blood volume is of normal. So maybe that should be taken into account In further research

 

[Pyrrhus]

Related discussion:

Poll on the effects of IV saline on ME/CFS symptoms
https://forums.phoenixrising.me/threads/poll-on-the-effects-of-iv-saline-on-me-cfs-symptoms.33507/

 

[marcjf]

Daily IV saline does not sound very practical, even if you manage to do it yourself.
Why not simply increasing water and electrolyte intake, combined maybe with either Fludrocortisone or Licorice root?

Also, how do you objectively measure blood volume on a day-to-day basis (non-invasive)? Symptoms can help, but that is probably not sensitive enough.

 

[kushami]

In answer to the previous comment:

Patients are usually put on IV saline only when other measures for volume expansion have failed.

This could be because they cannot tolerate an increased salt and fluid or electrolyte intake, or cannot tolerate the medications that increase blood volume. Or because they’ve tried these methods and they don’t work, but the treating doctor still suspects low blood volume.

There has been some research on patients with POTS with low blood volume implicating the RAAS*. The hypothesis is that a faulty RAAS keeps the blood volume artificially low, meaning the person “pees out” all the extra liquid despite their best efforts to top up and hold onto it.

IV saline bypasses the RAAS, and the patients can hold onto that extra fluid for perhaps a day to a week until the faulty RAAS catches on and removes it.

*RAAS = renin angiotensin aldosterone system

 

[Jyoti]

Here is a small controlled study done by Julian Stewart that looked at the effects of both IV saline and ORS on children with POTS. Obviously, this won't apply exactly to all of us, but I have found it helpful in navigating my choices in dealing with low blood volume issues. He finds that:

Giving ORS to POTS patients produced effective, short-term mitigation of their orthostatic intolerance, presumably by facilitating rapid repletion of salt and water. Within the short time course of this investigation, ORS was at least as effective in increasing orthostatic tolerance than IV saline. This supports the use of ORS as an easy, safe, practical therapy to mitigate symptoms associated with orthostatic intolerance. Because ORS is inexpensive, safe and easily administered, it may be considered as an effective alternative to IV saline for rapid resolution of symptoms associated with orthostatic intolerance.

He noted as well several areas in which ORS was actually notably MORE effective than IV saline in reducing OI symptoms, without, of course, the risks involved in regular saline administration.

I kind of poo-pooed ORS after an initial trial. It definitely did not cure my POTS! That was at the outset of my illness, though, and I fear I thought perhaps something would do all that. I have since had IV saline a couple of times and ....yes. It helps. For a bit. After reading this study I decided to experiment with a few ORS options and I have had different reactions to each brand/formulation.

Eventually I found one that seems to work for me and I am taking two liters a day of it consistently. I would say that doing so has bumped up my functionality by about 10%, which, while no cure, is something for which I am very grateful at this point.

 

[servideus]

This is a very interesting topic! My red blood cell volume, hemoglobin and reticulocytes have been reduced for a long time. And on the MRI of the brain, doctors found more than 15 focal changes, probably of a dystrophic nature. Now it became clear to me that it was a lack of blood.

I tried drinking electrolytes for 10 days. After that, the reticulocytes increased from 7.6 to 10%, this is already normal. But the volume of red blood cells and hemoglobin have not changed. It is expensive to take electrolytes all the time. And I read on Wikipedia that enalapril helps reduce water consumption.

"ACE inhibitors may also be used to help decrease excessive water consumption in people with schizophrenia resulting in psychogenic polydipsia.[12][13] A double-blind, placebo-controlled trial showed that when used for this purpose, enalapril led to decreased consumption (determined by urine output and osmolality) in 60% of people;[14] the same effect has been demonstrated in other ACE inhibitors.[15]"

After that, I started taking 4 mg perindopril, as a more modern analogue of enalapril. After a month of administration, reticulocytes increased slightly from 10 to 10.7%. And the volume of red blood cells and hemoglobin increased slightly. So maybe enalapril and its analogues also help to increase blood volume a little.