Supported Studies Point To Possibility That Dietary Salt May Stimulate Activity Of Key Immune Cells Involved In Ms Attacks

[Zap]

From the National MS Society - this may be a slippery slope for us with autoimmune POTS:

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7446

They're basically saying that studies have shown up-regulation of Th17 immune cells which cause at least some MS symptoms.

Strangely enough, I was on a very low salt diet for some time. Despite the contradiction it was part of what helped me quite a bit. I've always wondered anyway if supplementing grossly large amounts of salt result in more purging by the kidneys of both salt and the water we want to hang on to.

I've been in a lot of pain the last few weeks and stumbled across this while looking for some type of explanation. Love to discuss it further.

[sue1234]

I have been one that does not do well on high salt. When I have tried it in the past, it seems to bloat my stomach, and that is a huge issue already for me. I will avoid that particular symptom at all costs! So, no loss for me not to take in salt.

[issie]

LOL ---proving my point even more. I've never thought that salt loading was a good thing. No one seems to listen -----to me.

Next thing will be something on florinef ---let's wait and see. LOL!

Issie

[Zap]

I suppose my thought is that if the body is already in a state of attempting to purge water/electrolytes that adding more will just make it correspondingly purge more.

The Florinef at least works in a similar manner to aldosterone, which tells the body to conserve water and electrolytes. Supplementing it into the bloodstream will ultimately have the desired reaction UNTIL the additional levels cause the body's own aldosterone production to drop, as it believes them to be too high. So if the body is mediating these things in the first place by lowering aldosterone, adding a synthetic copy of it will not do much better than adding more salt and water.

The problem is ultimately trying to force the body to do what one wants instead of figuring out WHY it is behaving this way and finding the root cause for this. Once the root cause is treated, it is likely that aldosterone levels will normalize on their own accord.

If the root cause is indeed an autoimmunity, it would make sense that attempting to balance that will shift the entire body's process toward normal. I can certainly attest that my week stint of dexamethasone a while back definitely normalized many things. But again, one has to ask if the body will then lower cortisol as a result if levels are artificially raised for too long, causing a vicious cycle with the body's own feedback systems.

[issie]

ZAP - I like how you think. We seem to be pretty much on the same page. I've always said unless there is a proven adrenal dysfunction --I'm thinking that messing around with Florinef --will long term, NOT be a good thing. I've written plenty about my views on Florinef ---and most of it's not favorable. I have always worried that long term - there could be bad consequences. If you are messing with something that isn't messed up - and intentionally changing how it functions ---what will be the long term effects? Is this "band-aid" worth it? I don't think this is getting to the CORE of the problem. Just masking something with possible long term complications. But, this is just ME and my OPINION.

Issie

[ramakentesh]

This might suggest that if POTS is autoimmune or autoinflammatory then excess salt might be like putting gasoline on a fire... But until there is firm evidence I would tell people to increase blood volume they need lots of salt and perhaps florinef.

[Relax86]

Originally my POTS came on strong after a 4 day hospital stay. Way too much blood work and chronically low BP was a terrible combo to me. Florinef didn't work; made me worse; but I seemed to tolerate salt and water. The combo only temporarily helped along with hydrocortisone. At some point I could no longer sustain my BP without some extra help and I used midrodine. Once I stopped craving salt I stopped using salt. AFter only a few weeks with midrodine my BP returned to my normal. I guess my point is that while hypovolemic the salt and water helped; once that seemed to resolve then salting didn't help. I am currently exploring my + ANA. Unsure what came first the possible autoimmune or hypovolemic POTs caused autoimmune flare. At any rate, it seemed like for me salt had it's place but only temporarily.

[ramakentesh]

Im starting to think that in many hypovolumia might just be a biproduct of the illness, not the main problem.

[issie]

Im starting to think that in many hypovolumia might just be a biproduct of the illness, not the main problem.

I think so! I really think we have to address the immune system itself. Take care of the core problem and the problem(s) will go away. I also STRONGLY think we have to do whatever it takes to make our bodies as clean as possible so it can support itself. We have to make CHANGES TO HAVE A CHANGE. Diet, I believe is very important. Stop putting the fake-out Band-Aids on and treat the real issues! Lots of things masking the issues, (meds, salt, massive amounts of water). But, get to the core of the problem and we may not need ANY of these things. Not saying we won't need medicine --we probably will ---those things that make the immune system function to optimal. We will probably also need alternative meds to support in other ways.

Issie

[ramakentesh]

We dont know what the real issues are so its hard to treat them. We might know soon but not yet.

[issie]

We dont know what the real issues are so its hard to treat them. We might know soon but not yet.

I think we are a whole lot closer.

Issie

[Zap]

I've been revisiting this dialogue on account of some of my endocrine test results that were discovered to have irregularities (and need to be redone).

My reading further sent me looking at more genetic items, the most interesting of which is a gene that results in greater urinary excretion of aldosterone.

The SNP in question is rs6387 - each G allele results in 21% higher THAldo excretion (a metabolite of Aldosterone). This is also tied to excretion of androgen, THCortisol, and cortisol metabolites.

Reductions in 11-hydroxylase efficiency can result in impaired production of cortisol and aldosterone production (via lowered corticosterone). Adding this to enhanced excretion could result in deficiencies of essential hormones that regulate blood volume and inflammatory response.

I'd be curious to see how many others have mutations in the rs6387 gene. I've got one G allele, and 21% higher excretion of aldosterone doesn't seem to be anything to scoff at. Maybe the resulting numbers are even sub-clinical given current testing and width of the normal ranges. It would also be worth noting whether hypovolemia is likely present or not, since this mutation may OR may not apply to other etiologies of POTS, aside from hypovolemia-based ones.

It is also interesting to think that, if a perfect genetic storm occurred one could be prone to high blood pressure, but exhibit normal blood pressure due to changes in aldosterone excretion. This would definitely be a red herring for diagnosis of certain disorders, given the absence of highly expected symptoms, like elevated blood pressure. May even explain how one syndrome can have such different sets of symptoms based on each individual. Food for thought.....

[tachyfor50years]

If I don't take enough salt I would faint in a heart beat! but it always makes my hands and feet swell up (no rings, no shoes) but I don't know if it is the salt or my kidneys.

One unusual thing about me is: I can't tolerate plain water, it makes me sick to my stomach, I mean (bottled spring water, distilled water, tap water, and smart water); it has to be juice, herbal tea or gatorade.

[julieph85]

I agree with RAMA. I also had a dr one time tell me he thinks that our bodies just THINK we are low volume and that we actually aren't. This is why I don't salt load- my pots came on when I was 7 months pregnant. My blood volume at that point was 6 times higher then a normal person. Still got pots. My volume is not the issue. My issue is my blood isn't getting upstairs because it is hanging out in my legs because I have deconditioned vaso receptors in my body from 4 months of laying flat and then given an injection of betamethasone that stimulated an autoimmune response. In my opinion anyway

[diabeticgonewild]

Salt causes your body to secrete anti-diueretic hormone (ADH), thus causing fluid retention.

Anyways salt causes cramps for me, in addition to other problems.

I have autoimmune dysautonomia.

[Zap]

It may indeed be that the body somehow thinks there is low volume, as at least one or two studies have shown no functional lack of perfusion in the brains of POTS patients. This at least explains a lack of any physical damage, but leaves the hanging question as to WHAT could possibly be going on to cause such symptoms.

My problem is I seem to have a migratory etiology - I've gone from pain and achy back to dizzy and confused. At least in this expression / phase of my troubles, salt seems to improve my symptoms. Other times, it doesn't do as much. That is probably the most confusing part of all of this - the changing collections of symptoms. I don't know if many others have this same phenomenon, though I've seen it mentioned at least once or twice before.

Since I posted, I've been reading about some other disorders, including glucocorticoid resistance, which can cause some other steroidal imbalances as well. The treatment, is ironically the same as that which made me feel normal again - a small dosage of dexamethasone. At least in my case this certainly warrants further research. This disorder can also cause blood volume issues as it affects aldosterone and sex steroids through compensatory feedback.

Some research even indicates that autoimmunity and rheumatoid disorders may have underlying causes in HPA axis abnormalities, which eventually trigger the inception of disease. This has a certain similarity to possible onset causes of dysautonomia, as infections can modulate the HPA axis, leading to unforeseen consequences.

[issie]

http://jcem.endojournals.org/content/91/12/5051.full

Zap, is this the article you're referring to? I find this interesting and yet confusing at the same time. My allele is listed as CT on rs6387. So, not sure why it's not the CG variant that you list. I don't know if this is an old way of recording the allele or why (since my testing has been done awhile). I do however know that I have both low renin and aldosterone. What this article indicated is there would be low renin and high aldosterone and this causing high bp. I do have higher bp's - rather than lower ones. I don't do well on higher salt. I use salt at a normal level and do not salt load. It also mentioned an association with estrogen as to levels of THAIdo excretion, (although this didn't look confirmed). The association with salt/fluid balance and ACTH I haven't been able to figure out. Early in learning of my having POTS - I researched aldosterone since my levels are low and also low renin. Interestingly, the treatment for this is high dose diuretics. Which seems to be so wrong for a POTS person. And the doctors must have thought that also - because they didn't give them to me. I was advised not to salt load. With time, I did continue to have worsening kidney function and my GFR continued to get lower. Since I'm addressing my autoimmune issues with both diet and low dose antibiotics and anti-malarial herbals ---my kidney function has improved considerably - almost near normal now. I'm thinking my key to POTS and my genetic mutations lies in diet and autoimmune. Of course, you and I have talked, and working on the methylation dysfunctions that I've found do seem to make a big difference in how I feel. I think working around that and getting that function to work better - is helping too.

Issie

[Zap]

Yes, I believe that is the one (though maybe from a different journal or source). There are different sets of abbreviations used for the various genetic alleles, depending on the source. It looks like you're also heterozygous, hence a 21% increase in excretion, at least per the genes. I'm not sure how this ties into the increased production issue - because even if there was elevated production, there is also greatly elevated excretion, which in theory could possibly result in low levels.

I would think that it would be completely unsound to recommend anyone that has high blood pressure increase salt intake. That said, diuretics certainly seem wrong for POTS.

I definitely still think that there is an autoimmune connection and this article seems to discuss abnormalities in steroidal excretion - which could set the stage for autoimmunity. What I find reprehensible is that despite some of the other articles that have been posted that postulate that POTS is an autoimmune disorder, or that at least a subgroup has specific indications of autoimmunity, is that most doctors won't dare to attempt to treat it with a 100 foot pole. Their flawed assessment of risks of autoimmune treatments versus their ability to alleviate suffering cannot be understood by a completely normal, healthy person. Many of those that are sick would likely take huge risks for the possibility of being something approaching normal. The doctors should not be allowed to stand in their way, but rather to provide information and compelling arguments to weigh a decision that should ultimately belong to the patient.

[issie]

So, we address our immune systems ourselves --with what WE can do. Diet and supplements. Here's something someone sent me that I thought was very interesting. I don't have reference sources - but, I found it interesting. When I tried colostrum --years ago - it made a huge difference. So maybe, will go that route again. I do have the Symbiotics Immune Formula of Colostrum and seems like that would be a good thing to try. Something I'm thinking of trying again - anyways.

Issie

Colostrum contains IgA, IgG, and IgM - which may be why it proves helpful. It could be used similarly to IVIg - but whether or not the large molecules absorb into the bloodstream is questionable, as well as if the stomach acid damages them.

MCAD) likely result from one of two scenarios - Infection or Immune malfunction. IgD activates basophils and mast cells to produce antimicrobial factors. IgE triggers histamine release from mast cells and protects against parasitic worms AND some microscopic parasites. Reducing these parasitic infections reverses the immune system suppression that they can cause. This immune suppression can be the cause of various maladies. Some of the research is showing that some autoimmune issues may actually be the result of reduced immune function.
________________________________

[Zap]

Some of the research is showing that some autoimmune issues may actually be the result of reduced immune function.

I've seen this research, and I agree with it - even in spite of normal levels of antibodies, if hormone levels have issues (maybe sub-clinically) then the immune system isn't operating properly, and as a result it may not be able to overcome the chronic infection. Stimulating it has helped me, but even in spite of all I've done in the past (strict diet, copious amounts of herbs, etc) I have yet to be able to do anything more that keep things at bay for some of the time.

This seems to indicate some other type of functional abnormality that allows the infection(s) to return as soon as one lets their guard down, even a little tiny bit.

Reference this article: http://www.ncbi.nlm.nih.gov/pubmed/2062254

In addition to the well-known detrimental effects of large, pharmacologic dosages of glucocorticoids upon the immune process, there is impressive evidence that physiologic amounts of cortisol, the chief glucocorticoid normally produced by the human adrenal cortex, is necessary for the development and maintenance of normal immunity.

This just shows how much of a balancing act is necessary to keep the body operating correctly. The article goes on to say that there is a feedback mechanism between the HPA axis and the immune system.

In my research I've seen indications that function of the hypothalamus is affected by chronic stress (including things like PTSD). Chronic disorders (chronic fatigue, POTS, Fibro) may stem from the body attempting to adapt to changing conditions that don't seem to abate (and may even cause other comorbid issues like PTSD). Many of the symptoms could be related to deeper problems, which appear to be tied to immune function and HPA activity.

[BadBadBear]

Zap, that's interesting.

I know my AM cortisol is low-ish (12), but then one of the things the adrenals supposedly really like when they are stressed is salt... So at least for me, I come in a circle back to consuming more salt. I have found that however much salt I consume, I am never bloated. The only time I bloat up is when I go to a lower salt diet - then my abdomen puffs up like a balloon and I'm in complete misery.

I would like to cut back on salt (I'm at about 5-6 grams a day) but I'm not sure how to do it without having issues.

[issie]

Zap, that's interesting the connection with cortisol and the immune system. Years ago, I had low cortisol and had to take meds for awhile for that. (I also have IV cortisol with any surgeries that I have to support my adrenal function and prevent crashing during the surgery.) But, I didn't really find that taking the oral meds helped that much. I remember pulling myself out of that with massive doses of colostrum. I didn't realize it was because of working on the immune system that it was doing this. But, I guess it was. Most of the blood testing that I had back then showed cortisol levels at normal - but, the alternative, saliva testing showed very abnormal low levels.

Issie

[Relax86]

I'm one who credits Hydrocortisone with pulling me thru my flare of Jan 2012. I originally thought that flare got so bad due to a 4 day hospital stay with tremendous amounts of bloodwork lowering my blood volume. It took me forever to feel better. Unfortunately my symptoms have re-flared much sooner than I expected and I don't have a reason to suspect low blood volume. My autoimmune issue was never diagnosed, it was left as positive but non-specific. Now that I'm re-flared (although my symptoms aren't exactly the same) I got some updated bloodwork from the autoimmune doc. I pray she ordered the right tests. But I will say that once again - cortisone has been keeping me functional. Dose I've been using is 2.5 mg at 8am and 2.5 at 1pm. But this flare is very different from the last - sort of like a second child....haha....comes from same genes but has an entirely different personality.

[Zap]

Interesting - converting either cortisone or hydrocortisone on the steroid equivalent chart shows that to be quite a low dose. My moment of truth was using Dexamethasone, near the low end of its dosing scale, but even still that results in approximately 10x as much, equivalent to around 25 mg HC (or somewhat equivalent to a normal amount the body should be producing). It was only for a short term, and who knows if less would have had an effect or if something with more mineralcorticoid action would have been different. That said it also is a lot more anti-inflammatory, so that could have likely been playing a part, too.

I've reached another moment-of-truth. Two more salivary cortisol tests went in for processing today, if they match my other botched tests, maybe I'll finally find a root cause for the unexplained part of my misery. I figure with two doctors saying my dysautonomia is only mild that there must be something else at play keeping my ability to function reduced. Time will tell, I suppose.

[issie]

Zap,

Hope you get some answers!

Issie