Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

[toyfoof]

So $20,000 for a treatment that has a 3 in 10 chance of producing long-term improvement.

Well, there goes that idea.

There is something in the back of my mind about this type of treatment when it comes to how long it lasts. Cant bleeding remember!!

Maybe this is at least a lead to other ideas for getting the same results . . . ?

I think I am going to send this paper to my doctor and see what he thinks. All his efforts to improve mitochondrial function in me fail. Maybe because my case is vascular instead. At least Table 5 gives me a good way to explain most of my symptoms, which I usually struggle to articulate in a way that is meaningful to doctors.

 

[andyguitar]

I think I am going to send this paper to my doctor and see what he thinks.

Sounds like a good idea. When it comes to the cost for this kind of treatment there must be some health insurance plans that cover it. $20k for a treatment is not that much in comparison to other things in the US is it?

 

[toyfoof]

$20k for a treatment is not that much in comparison to other things in the US is it?

I've never done any infusion treatments, but I imagine it's in line with those types of treatments. It's certainly much cheaper than the $80k+ spinal surgery I had last year (all covered by insurance, luckily).

I have new insurance now (through my boyfriend) which is not as good as my prior insurance, and I doubt something like this would be covered. But I'm hoping to get my doctor thinking about vascular/blood flow issues for me and maybe come up with something creative.

 

[andyguitar]

But I'm hoping to get my doctor thinking about vascular/blood flow issues for me and maybe come up with something creative.

Yeah might help a bit. Not wanting to be negative about it but the removal of the autoantibodies is probably the key here.

 

[toyfoof]

Not wanting to be negative about it but the removal of the autoantibodies is probably the key here.

Well, it's good to have some hope, even if it costs $20k and will likely never happen. . .

Do you know, are these autoantibodies present in all people, or would it be worth trying to test for them to see if I even have them?

 

[Learner1]

The science of this paper is way over my head, but the descriptions of how their theory presents in ME/CFS symptoms — particularly as laid out in Table 5 — really resonate with me.

Does anybody know if having the quoted procedure is a “one and done” type thing, where the autoantibodies removal is permanent, or would it need to be done over and over because the autoantibodies come back?

It would need to be done over and over as the antibodies would come back. This is why a treatment like Rituximab is used as a treatment course of it over a year or more theoretically can teach the body not to make the bad antibodies anymore. And some patients have had the mechanical removal of antibodies as a test to determine whether a treatment like Rituximab would benefit them.

Theoretically if this were the case, wouldn’t taking nitric oxide help

No.

 

[toyfoof]

And some patients have had the mechanical removal of antibodies as a test to determine whether a treatment like Rituximab would benefit them.

Interesting. I've never really looked into Rituximab for me. Forgive me if this is obvious, but would Rituximab be an option for this particular issue? Or are you just using it as an example of a similar intervention?

 

[andyguitar]

Do you know, are these autoantibodies present in all people, or would it be worth trying to test for them to see if I even have them?

Not present in everyone, they do turn up in a few diseases. Yeah getting tested for them would be the first step.

 

[Learner1]

Yes. I have gotten it for alpha adrenergic and muscarinic antibodies causing my hyper POTS and autoimmune MCAS. I was on autoimmune dose IVIG for about 20 months prior to beginning it and I have stayed on it throughout the treatment. My doctor also was very careful to ensure that I didn't have any active infections, which could have been part of the problem with some of the people who had bad experiences with Rituximab.

Several of his patients over the past 6 years have had success with this treatment. One does an initial infusion, then two weeks later a second infusion to kill all of the antibodies (B cells). Then, every 3 months for a year the dose is repeated. Then depending on how many and how bad the antibodies were to start with one can either continue for a little bit longer, or stop, and wait for the new B cells to grow back, which generally takes 6 to 12 months. And then you see if you have bad antibodies again. In most patients he's done it with that have had success, they have stayed away, if they've started to come back, then more or Rituximab is administered.

My doctor encouraged me to talk to some other patients who had gone through this process, and every one of them, whether it was successful or not was not sorry that they had done it. And, as the majority of my symptoms were due to my autoimmune problems, and I had had cytokine testing that indicated that they were totally autoimmune and not from infections, it seemed worth it to try.

Not wanting to be talked into such a major step by just one doctor, though I do trust him completely, I did get a second opinion from an immunologist in another city who is an expert at co-occurring immunodeficiency and autoimmunity, and we talked through various options, including stem cells and bortezimub, and he thought Rituximab would be my lowest risk, best chance of success choice. When I asked what protocol of it he recommended, he specified the exact same protocol, dose and timing, that my doctor had recommended. So I proceeded.

As I mentioned, it is very important to ensure that one has no infections before one wipes out all of one's antibodies. I did get a virus soon after my second infusion, and I was pretty ill for a month, but I finally kicked it with the help of IVIG, and after that everything has been fine. I have no B cells now, and I'm waiting for a few more months to see what happens.

 

[Learner1]

Not present in everyone, they do turn up in a few diseases. Yeah getting tested for them would be the first step.

The CellTrend POTS test would be helpful. My blood got sent from California to Germany so the test could be done.

Beyond these specific antibodies, a lot of patients have had other antibodies causing all sorts of weird symptoms, so you might look into some of the antibodies on this list collected from patients here on Phoenix Rising and see if you have any of the symptoms that relate to any of the antibodies before pursuing any of the tests.

Additionally, EBV is notorious for triggering all kinds of antibodies, and other herpes viruses and other infections can do so too. So if you find antibodies, you'll want to be sure that you don't have an infection quietly creating more. I didn't think I was sick for about 3 years, just fatigued but had multiple chronic infections that my immune system wasn't doing a good job of fighting. Fighting all of these issues has been tremendously helpful. I am off my MCAS meds and have greatly reduced my POTS meds and the Rituximab is responsible for this progress.

 

[raghav]

@Learner1 With covid19 in the air wont it be too risky to knock off antibodies with rituximab, at least till this pandemic is under control. In India entire hospitals are getting infested with covid 19 because of the way the airconditioning systems of multi storied buildings are designed.

 

[toyfoof]

@andyguitar and @Learner1 thank you! This is all good info for me to dig into before my next appointment, and then go over with my doctor.

I do have chronic, active EBV infection (I just had my titers done and they were high) and have had HHV (I can’t remember which one) active in the past as well. So that might be tricky. But this is a new avenue for me, which gives me some hope.

 

[andyguitar]

But this is a new avenue for me, which gives me some hope.

The treatment given to lower the autoantibodies was Immunoadsorption @toyfoof ,it was done over 5 days. Reduction of the autoantibodies lasted 6 months ish.

 

[pattismith]

endothelial dysfunction and vascular autonomic dysfunction are related.

Dr Carmen Scheibenbogen is also coauthor of this recent paper:

https://forums.phoenixrising.me/thr...ysautonomia-and-small-fiber-neuropathy.79792/
;;

 

[gbells]

This was expected given cold skin and excess inflammation from Nf-kB.

 

[Strawberry]

It may be worthwhile to look into depletion if nitric oxide and/or BH4 which may contribute to these issues.

I need to try to remember this!

 

[raghav]

Will Pentoxifylline help in reducing ROS ?
Pentoxifylline is a methylxanthine derivative and nonselective inhibitor of the cyclic nucleotide phosphodiesterases that increase the rate of breakdown of cAMP and cGMP. The drug has two major clinical effects: increasing microvascular blood flow, thereby enhancing oxygenation of ischemic tissue.

Pentoxifylline improves microvascular blood flow in conditions of vascular insufficiency. The clinical benefits of pentoxifylline have been attributed to its effects on the cellular elements of whole blood, although a few studies suggest it may also be a vasodilator.

 

[raghav]

Pentoxifylline is available as Trental 400 mg from Sanofi. I will be trying it today or tomorrow. Will post details. Only fear is it can cause diarrhea and other GI symptoms.

 

[andyguitar]

Only fear is it can cause diarrhea and other GI symptoms.

Why not try a half dose to start with?

 

[raghav]

I will do that a 100 mg dose is available for haemorrhoids. BTW Verrillo suggests this medicine in her book on CFS.