CFS, POTS, OH: treatment for adrenergic & muscarinic receptor antibodies

sb4

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https://docs.google.com/document/d/1cGvcKj0LcC4yRUtbVb46U3yxDff1ZIXC-FBUHCQYJuI/mobilebasic?pli=1

In the paper above patients with a similar autoimmune condition, myastenia gravis, where treated, with good results, with the following:

a) Aminoacid precursors (L-phenylalanine, L-tyrosine), 50 mg before breakfast.
b) Inhibitor of NA re-uptake (desipramine), 25 mg before breakfast.
c) NA-releasing agent + suppressor of serotonergic activity (buspirone) l0-20 mg at 10 am + beta-adrenergic blocking agent (propranolol 10-20 mg).
d) Alpha-1 agonists: adrafinil (150-300 mg) or modafinil (100-200 mg) at 10 a.m.


As far as I understand, they think adrenalin is too high and noradrenaline is too low, plasma serotonin is too high, this causes Th-1 immunosuppression + Th-2 predominance.

Am I right in thinking this could help autoimmune POTS? What could we use in place of the drugs (herbs, supplements)?
 

sb4

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An alternative to Mirtazapine could be using something like Pseudoephedrine and propanolol. Increases A1 and decreases B1/2.

I am hesitant to try this however as recently I have gotten worse from what I think is the mirtazapine. Around 2 weeks at 15mg I have been waking early morning with rapid, pounding yet weak heart beat and some skipped beats. This varies throughout the day. Wether its from serotonin syndrome or excess NE I don't know but its extremely discomfotable.
 

Lolinda

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One thing confusing me is my symptoms improve in the cold and other things , suggesting vasoconstriction issues, however I dont seem to experience blood pooling in the legs. Why is this?
I have been thinking a lot just about the same! Now, the question is, how does one know if one has blood pooling in the legs? When thinking of "pooling in the legs", people usually think of thickened heavy legs. But that is what one gets from water, fairly big quantities. Water that leaves the blood vessels accumulates in the tissues and is not drawn back by the veins and the lymph. Many people have that. But thats different from having too much blood down there, that is, have too much in the blood vessels, that is, they are dilated, stretched. I have currently the following infos:
- Tiny increases in blood vessel diameter would already cause huge problems because blood flow in a vessel increases by the 4th power of the diameter. So to say, "blood pooling in the legs" could be more accurately described as diverting flow (as opposed to diverting volume, which occurs too, but may be the smaller problem in itself)
- Its difficult to test by ultrasound. blood vessel crossection cannot be measured acurately as of today by ultrasound. I have experienced how that procedure is done: the doctor tries to fit a circle to the crossection of the blood vessel. A subjective visual procedure on an always not-so-sharp ultrasound image. Still, even reasearchers try this (and others tell them how stupid they are :) , I witnessed discussions of professors). For example here, at the end of this post, you see reference to blood flow measurements in the calves. That implies just these inaccurate crossection area measurements: flow is computed from speed and crossection area.
- impedance plethysmography has its own problems but could be more accurate and is used by researchers to measure blood pooling in pots. I am currently trying to get a doctor to do that for me.
- Is there research on measuring cm circumference of calves standing? Or, maybe smarter: immerse in water and check water levels in a deep pot?
- I always find it very enlightning to monitor issues by symptoms. My guess is: slight pain under the skin above the ankles of the feet, when standing still, could be an indication of blood pooling in the legs. If valid, this symptom could be a first antecedent heralding the later development of POTS. Interestingly, the problem came after an EBV infection, which has some papers linking it to onset of autoimmune issues.

In sum: this condition is difficult to find out, but in POTS blood does pool in the legs (and elsewhere) and improvement in cold weather probably brings about improvement by increasing your natural vasoconstriction. But honestly, all this is written from logic and not from knowledge, and if anyone has papers, more than welcome!

Another way to find out could be to look for improvement by compression stockings.

I will read your further posts in detail, when I have some time. They contain precious information such as selenium, which I will put into the questionnaire I prepare.
 
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Lolinda

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Actually, does anyone else have that too?
slight pain under the skin of the legs, most pronounced above the ankles of the feet, appears only when standing, particularly when standing still. It is worse on days when I succeed to elevate my generally low blood pressure.
- It would seem logical to me that it could be an indication of blood pooling in the legs, distending the blood vessels painfully.
 
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sb4

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Actually, does anyone else have that too?
slight pain under the skin of the legs, most pronounced above the ankles of the feet, appears only when standing, particukarky when standing still
- It would seem logical to me that it could be an indication of blood pooling in the legs, distending the blood vessels painfully.
I do not.

I dont even get my veins popping out in legs, they are hidden and cold. Yet I do way better in cold due to vasoconstriction.
 

sb4

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I would have thought that LDN would work well, as it supposedly causes an increase in endorphins which modulate the immune system. However from searching around it appears very few people with POTS improve with it...

This would suggest either a small amount of people with pots have autoimmunity or LDN works pourly against these antibodies.

@Lolinda have you tried LDN?
 

Lolinda

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Not yet. I have it on the list. However, it is low priority for me because I have no general inflammatory state. All my inflammation markers such as CRP, ESR, TNF, IL-6 are as normal as normal can be. I am not yet familiar with how LDN dampens excessive immunity, but maybe it is a general mechanism that just dampens everything? In that case I would not be the right candidate for it because I do not need a general dampening of immunity. So, from all the treatment chances, for my case, probably such things could be good that induce tolerance to self for the adrenergic receptors. Currently, I am collecting a longer than ever list what could help against autoimmunity in smart and not general ways. So to say, "not diminish the power of immunity, but increase the intelligence". :) Will publish it soon.

Have you seen people who report negative results? Side ecffects?
I like a lot your quote abut experimenting :) :) But I equally like to select those experiments, which have the best chance/risk ratio. Unfortunately, for this one needs to learn a lot about each substance, read experiences by others, etc...
 
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sb4

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@Lolinda I THINK it works by increasing or decreasing immunity depending on what's needed. Either way I will hopefully be trying some in the near future so I will let you know.

Found this which explains it:
Without getting too geeky here, I want to tell you a little bit about how LDN works because it’s interesting, and it, of course, helps to understand how it might benefit you if you have an immune-related condition. And this is ongoing. There are new papers published about the mechanisms of LDN each year, and we’re still learning about this, but so far, there are two main mechanisms that have been identified. One is that, as I said, it regulates the immune system, and it does this primarily by promoting T regulatory cell function. The T regulatory cells, or Tregs, they keep the immune system in balance, and they turn inflammation on and off, depending on what’s needed, and they prevent the immune system from getting stuck in patients with overactive immune systems, like people with allergies or asthma or autoimmune conditions. The way this works is LDN, as I mentioned, it temporarily blockades the opioid receptors in the brain, and when the receptors are blocked, the body thinks more opioids are needed, and so it produces more, and by the time more opioids are produced, LDN is out of the system, the receptors are unblocked and receive those, and that leads to essentially a net increase in opioid production.
 

kangaSue

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@Lolinda , @Gingergrrl and others interested,

The available treatment options for POTS is likely influenced by what form of POTS one but this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511487/ throws nitrates into the mix too but in this case, mentioned as an option for the low-flow POTS subset when they found that;
[Our data therefore strongly suggest a defect in NO-mediated vasodilation in the low-flow POTS subset.]

They were investigating the hypothesis that microvascular endothelial dysfunction produces decreased peripheral blood flow in low-flow POTS and testing whether α-adrenergic vasoregulation was impaired in low-flow POTS.

There was no inclusion of antibody testing data here but it occurred to me that that if having adrenergic antibodies was another reason for impaired α-adrenergic vasoregulation, then nitrates might be an option to try for those testing positive to these antibodies.

They were testing for cutaneous microvascular blood flow deficiency in this study but my own experience in finding that with using nitrates to treat intestinal ischemia from a microvascular cause, the increased nitric oxide release also raises my low blood pressure in the presence of also having mild Orthostatic Hypotension.
 

bertiedog

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I would have thought that LDN would work well, as it supposedly causes an increase in endorphins which modulate the immune system. However from searching around it appears very few people with POTS improve with it...
I have had POTS for the past 17 years but it is fairly well controlled by Propananol 20 mg on rising although I still find shopping and standing in hot department shops will bring it on.

LDN did nothing for me, in fact I had a bad reaction to even a tiny dose every time I took it. Within 30 minutes of taking a dose I would be so dizzy for between 3-4 hours and couldn't do my normal activities. It was really horrible but of course we are all different.

Pam
 

Valentijn

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Mirtazapine all but abolished my OI.
Yohimbe has helped mine a lot as well, and it has a similar mechanism. But it's more specific to the Alpha 2a, 2b, and 2c receptors, and has a shorter half-life.

I was a bit worried about the strength of Mirtazapine's affinity for a couple of the serotonin receptors, since an SSRI made me feel awful. It's impact on the histamine receptor is quite interesting, however.
 

adreno

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Yohimbe has helped mine a lot as well, and it has a similar mechanism. But it's more specific to the Alpha 2a, 2b, and 2c receptors, and has a shorter half-life.

I was a bit worried about the strength of Mirtazapine's affinity for a couple of the serotonin receptors, since an SSRI made me feel awful. It's impact on the histamine receptor is quite interesting, however.
I just ordered some Yohimbine and am gonna try it.

Mirtazapine has very mild serotonergic action. It has been combined with SSRIs in a few studies. It's antagonistic against 5-HT2A which is used as a treatment against serotonin syndrome.
 

JollyRoger

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A1 Autoantibodies
These would result in:
less saliva
less sweating
more vasodilation
pale skin
poor function in gastric sphincter muscles
salt reabsorption problems in kidn
Really!!!!!!!
I was in hospital last weekend and they found low sodium in my blood.
I told them because I always have a dry mouth.
I also have antibodies in my blood....

Damn.... it's really an autoimmune disease!!!
 

sb4

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@JollyRoger It could well be but don't jump to conclusions yet. If you can afford the cell trend antibodies test then that could be a breakthrough but I think there is more to this disease than just the antibodies problem.

Personally I think the virus that started this all for me is still causing problems in the background resulting in "adrenal fatigue", constant inflammation, overworked immune system = antibodies problem. To beat this we need to attack the root cause.
 

JollyRoger

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I made the test....
I'm positive for 2 antibodies...
BBut rituximab as treatment?? It can make so much damage if it's the wrong treatment.... like olaf bodden, the German football player.
 

Gingergrrl

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I made the test....I'm positive for 2 antibodies... But rituximab as treatment?? It can make so much damage if it's the wrong treatment.... like olaf bodden, the German football player.
Do you (or anyone) happen to know if Olaf Bodden tested positive for autoantibodies prior to doing Ritux? I'm in the middle of an insurance appeal for Ritux but if they approve it, I will be doing it as soon as possible. Prior to learning I was positive for 7 of the 9 Cell Trend auto-antibodies, plus four other autoantibodies, I would not have considered it. But I had such a positive response to ten months of high-dose IVIG, and currently have the closest to normal arm strength I have had in about 5-6 years, that we believe I could be a responder to Ritux. It is worth the risk to me and the biggest obstacle now is getting insurance approval.
 

JollyRoger

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Bodden did the treatment 2012.
I don't believe that the antibody tests were available at this time.

How much did you pay for the immunglobuline i.v.?
What about immunoadsorption?