A radical proposal or two for ME/CFS treatment. Based on similarities btwn this and sepsis/shock

[frozenborderline]

So I agree with david bell's work about low blood volume in ME/CFS and also how the disease resembles a less emergent, slower sepsis or septic/hyoovolemic shock with adaptations that make it barely livable. Not just low blood volume, there is often high Lactate especially after activity, and hypoperfusion to some organs especially the brain ...

The hearts role in this and the energetic dysfunction driving this at cellular level have been thoroughly documented by paul cheney, with his upright echocardiograms that showed diastolic dysfunction. All of this is similar to david systroms findings. For some reason, the heart just doesnt pump enough blood to brain especially while upright, and has preload failure where the blood isnt getting g from leg veins up to the heart , either.

David bell found IV saline helped a lot, albeit temporarily. I have found that too.

He also found that blood transfusions helped more dramatically... like long term remissions, fron a single infusion. That doesnt happen with saline.

Now this makes me wonder if blood volume is one aspect but the "unknown factor" that multiple groups have found in me/cfs plasma that is toxic , has to do with why blood transfusions would help, and why very regular saline infusions may help (diluting the bad factor in the blood, even if you cannot do plasmapheresis).

Why haven't more me/cfs docs tried blood transfusions, its gotta be easier than plasmapheresis approval or whatever?





But anyway, back to the sepsis idea. I thought, if we are truly trying to quickly correct volume and also help endothelial dysfunction like happens in sepsis , we should try hypertonic saline. This is risky, and it would make doctors who have patients with hypovolemic hypertension especially nervous. However, it seems like it could be more promising than normal saline and as far as I know nobody had ever tried it, clinically OR in a study
So heres the review on its use in septic shock.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC137320/

If you read that, there are several crossover things with ME/CFS that could be helpful. Normalizing cytokines, helping with preload pressure , helping with tissue perfusion , and so on and so on.

Of course this is more risk than normal saline but it blows my mind that since it's less risky than suramin and a million times cheaper nobody has proposed a clinical trial...

Someone should propose this to dr levine or some ME/CFS doc who still follows the dr bell conventional wisdom about low blood volume in me/cfs and how that causes the pots and many of the other issues

@Hip @sb4 @Whit @Janet Dafoe @Wayne @rpapen77 @jeff_w

 

[frozenborderline]

@Countrygirl @HTester
@ChloeC

 

[Shanti1]

I agree that a hypernatremic IV could increase blood volume, but would it be offset by the dehydrating nature it would have on cells as water is pulled from them to compensate for the high osmolarity in the bloodstream? Paul Anderson (NMD) indicates here that hypertonic IVs may be aggravating for CE/MFS https://www.power2practice.com/article/injection-therapies-chronic-fatigue-fibromyalgia/. I guess only a trial could really tell us.

I am interested in ways to increase blood volume. My ADH tested below the detection limit while osmolality taken at the same time was toward the high end. Urinary lactate is high. BP typically 85/53. I am going to talk with my doc about desmopressin next visit. Have you tried it and was it helpful at all?

 

[junkcrap50]

@Hip in his successful remission stories, I believe, had documented a case of a woman who was complete cured of her ME/CFS with daily (or very regular) IV isotonic saline infusions. It took several months (or longer) however. I do believe she noticed some small benefit when getting IV's for other reasons from the increase in blood volume. So, possibly a good response to saline IV may indicate potential long term success. Small possibility of this success story might be a HealthRising article. I can't find it on PR.

 

[Learner1]

Not just low blood volume, there is often high Lactate especially after activity,

I don't have low blood volume or high lactate. Many of us don't.

As for saline IVs, I find IVs far more useful when they have other nutrients in them, like B vitamins, aminos, antioxidants and minerals. These were originally prescribed to me by Paul Anderson, as mentioned above.

 

[Hip]

@Hip in his successful remission stories, I believe, had documented a case of a woman who was complete cured of her ME/CFS with daily (or very regular) IV isotonic saline infusions. It took several months (or longer) however.

I don't think that saline IV cure of ME/CFS is in my list of recovery and improvement stories, but I would be interested in reading that story, if you have a link.

 

[Hip]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC137320/

If you read that, there are several crossover things with ME/CFS that could be helpful. Normalizing cytokines, helping with preload pressure , helping with tissue perfusion , and so on and so on.

Of course this is more risk than normal saline but it blows my mind that since it's less risky than suramin and a million times cheaper nobody has proposed a clinical trial...

I am not sure what risks are involved with hypertonic saline infusions (infusion of a saline solution with a higher salt concentration than is found in the body), but it might be an interesting experiment.

That study suggests hypertonic saline has many mechanisms of action, including anti-inflammatory and immunomodulatory effect, and modulation of cellular signaling pathways.

 

[frozenborderline]

I am not sure what risks are involved with hypertonic saline infusions (infusion of a saline solution with a higher salt concentration than is found in the body), but it might be an interesting experiment.

Anytime you use fluids that aren't isotonic it's a risk for putting the blood out of balance in terms of electrolytes I think and causing either edema or something like that. True of hypotonic or hypertonic. I guess another risk with hypertonic might be causing hypertension, but they could monitor that.

But , it would be worth a try.

 

[frozenborderline]

don't have low blood volume or high lactate. Many of us don't.

I dont presume to speak for everyone on this forum. But I dont think that it's necessary to add qualifiers if you speak of theories of ME/CFS that generalize... it's just standard vernacular to say "most or many patients with me/Cfs have so and so". I would never say "all" and I'm mostly referring to dr bell's and Cheney's research and research they refer to (dr cheney didn't do the research on lactate but If you read his seminar which I've posted elsewhere, the transcript of... he discusses a method of looking at brain lactate with spectroscopy that yielded results in ME/CFS).

As for low blood volume, I'd be curious about a) how many people have low blood volume with me/Cfs at rest, and b) how many people have low blood volume during a flare or when they're upright a lot. It's hard to measure blood volume... blood could disappear into interstitial spaces during mcas episode

 

[Jaysfan]

I don't think that saline IV cure of ME/CFS is in my list of recovery and improvement stories, but I would be interested in reading that story, if you have a link.

Anyone have any luck with inhaled salt? Halotherapy? I believe it helps my breathing a little. Loosens a tight chest feeling