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I Think I Have Found A Treatment Not Only For Just Pots, But Other Rheumatic Illnesses.


jangle
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It's 1 am right now, and I have a bunch of thoughts wizzing through my head and a large volume of information. Nothing concrete, everything based off of conjecture, but I'm going to try to present my argument in the most concise and coherent manner.

1.) Angiotensin ii is heavily involved in the inflammatory process.

http://www.ncbi.nlm.nih.gov/pubmed/12676174

http://www.jci.org/articles/view/41709

2.) People with rheumatic illnesses have increased levels of angiotensin ii, most likely due to a deficiency in ACE2 enzyme, which gets rid of angiotensin ii

Lupus

http://www.nature.com/gene/journal/v3/n1s/full/6363907a.html

Rheumatoid Arthritis

http://www.ncbi.nlm.nih.gov/pubmed/17265479

A study showing that patients with lupus and scleroderma had elevated levels of ACE2 enzyme autoantibodies (which would lead to higher angiotensin ii levels)

http://arthritis-research.com/content/12/3/R85

In that study, it showed that treatment with traditional immunosuppressive agents reduced the ACE2 enzyme autoantibody in one patient, which corresponded to a decrease in symptoms.

In POTS:

http://www.heartrhythmjournal.com/article/S1547-5271%2810%2901204-X/abstract

We have elevated angiotensin ii in our bodies. This circulating angiotensin ii, (from the 2nd study I posted) can result in inflammatory expression from virtually any cell in the body. My theory is, is that the only distinguishing characteristic between lupus, rheumatoid arthritis, POTS, and other connective tissue disorders is the type of cell that expresses an inflammatory reaction and the body's unique reaction to it.

Now, one emerging theme is that vitamin D deficiency is common amongst people with autoimmune illnesses.

Well it just so happens that vitamin D deficiency is correlated to increased angiotensin ii levels.

http://www.ncbi.nlm.nih.gov/pubmed/20351344

People with lower vitamin D levels have higher angiotensin ii levels. Which perhaps combined with other factors, predisposes them to autoimmune disease through the mechanism I explained earlier.

I.E. it's not necessarily the vitamin D deficiency directly that is causing the autoimmune disease, but it's the resulting increase in angiotensin ii levels coupled with a sensitive body to it.

Where's the proof??

Well, interestingly enough, there is a study done on a drug by the name of spironolactone in rheumatoid arthritis patients.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1808828/

Spironolactone increases ACE2 enzyme activity by 3 times (thus reducing circulating angiotensin ii levels by ~3 times)

http://circres.ahajournals.org/content/97/9/946.short

The results of the study showed that 76% of patients with rheumatoid arthritis responded favorably. "drug was also well tolerated."

My theory:

POTS is somehow tied to a connective tissue autoimmune disorder. It resembles in some way EDS, which is why EDS patients have an increased risk for POTS. According to the study that showed POTS patients have increased angiotensin ii levels, it is likely that that is causing our body to have a dysfunctional renin-angiotensin-aldesterone system which is causing our POTS directly.

Therefore, treatment would have to consist of increasing ACE2 activity

This can be accomplished in two ways.

The first, is by dramatically but safely increasing Vitamin D levels

The second is by using spironolactone to directly boost ACE2 activity.

now I can really only test one of those theories, however, according to this case study, supplementation with Vitamin D has been shown to treat POTS already.

http://www.mindcull.com/data/the-endocrine-society/endo-2009-the-endocrine-society/1-alpha-hydroxylation-defect-in-postural-orthostatic-tachycardia-syndrome-type2-remission-with-calcitriol-supplementation/#

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But, there is also a connection in the renin/aldosterone deficiency - if they are both low - people are not supposed to increase their potassium and spirlactone does increase potassium. I guess, you'd have to see if with this deficiency you are holding onto too much potassium before you'd try this drug.

Makes allot of sense - because so many of us do have autoimmune issues that we're dealing with. And speaking for myself - I think my whole body is one big oweee and I do have EDS.

Thanks jangle, for all the research!

Issie

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best wy to upregulate ace2 is to block ang II with something like losartan

Lorsartan was horrible for me. So that won't work for all. I felt like I was having a heart attack on it - pain down arm and in chest. Not good. I know it has worked for some though.

I was low in Vit D and still am despite taking about 6,000 a day. They have come up some - but not to optimal range. Can't say it's really helped my pain that much - but, maybe if I could get it up higher.

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I wonder if doing something like Boswellia which is an 5-lox inhibitor would help with this type of inflammation issues? I know it's probably not good to take asprin or Advil all the time - although Life Extension people say that everyone should. They attribute many of mankinds problems to inflammation. If we could get the inflammation down - our bodies might settle our over-active autonomic nervous systems down. We're all in hyper-drive.

Another herb that is really good for inflammation is Tumeric and also Ginger.

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My guess is that the portion of patients that do have elevated ang II may have a variety of different mechanisms that result in poor ace 2 activity - genetic, acquired (inflammatory or autoimmune) and autoantibodies to ang II receptors and ace 2 expression have been found in other conditions. Now Ill stop hijacking your thread.

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But, there is also a connection in the renin/aldosterone deficiency - if they are both low - people are not supposed to increase their potassium and spirlactone does increase potassium. I guess, you'd have to see if with this deficiency you are holding onto too much potassium before you'd try this drug.

Makes allot of sense - because so many of us do have autoimmune issues that we're dealing with. And speaking for myself - I think my whole body is one big oweee and I do have EDS.

Thanks jangle, for all the research!

Issie

That's so interesting, Issie. You're the first person who've I heard had the same thing as me....low aldosterone and low renin. My endocrinologist says that nearly all endocrine patients are low in Vitamin D3. He prescribes 50,000 units once a week for 8 weeks and then have your D3 rechecked.

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This maybe getting just a tad off topic but I've developed microcytic anemia.

With 4 IV iron infusions they brought my ferritin level up to 70.

In 2 months it's back down to 14.8.

I just read a post from a woman who also has microcytic anemia.

She said her hematologist said all of his patients with microcytic anemia had RA.

I thought maybe the cause was lady problems but at the same time I question how much blood I am really losing.

At times it doesn't seem that abnormal but I do have some very large clots like 5 inch.

And I've lost blood and soaked through pants all the way down to knees so that does not seem normal.

My plan is to have the uterine ablation to hopefully stop my blood loss and resolve the anemia but if there is an inflammatory autoimmune type process going on in my body similar to RA maybe that is the cause of the anemia.

The other woman had to receive many blood transfusions and over the years her microcytic anemia resolved.

I wondered if she may have received other things in with that blood that helped treat her issue similar to what we see people getting with the IVIG. Her story is her body chemistry somehow changed.

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Wow this is why for us ladies we get so much more symptomatic with our menstrual cycle.

We have more inflammation at that time due to hormone changes/prostaglandin which cause our symptoms to go even further out of whack. This is all fitting together and makes perfect sense.

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Jangle, I think your theory is perfect. In fact I think I am a living proof of it. I've had RA for 6 years and the docs at mayo say they feel certain my pots is caused by it due to systemic inflammation at a cellular level. That is why they do I ivig to us autoimmune potsies, to put it in remission and get rid of those antibodies. I have always believed my pots is related to angiotensin 2 because I often feel horrible after a night of even moderate drinking and I don't mean a hangover I mean days of extreme thirst and high Bp. Through my own research I concluded that it was due to high ang 2 levels because even healthy people have a big rise in ang2 after consuming alcohol so you can imagine how high the rise is in us. Something else- it is theorized that us hyperandrenergic pots are experiencing hypersensitivity to catecholamines. Look up ang2 and catecholamines. Ang2 causes increased sensitivity to catecholamines and since it is elevated in pots, there you go. Also, many women with pots have worsening of symptoms during the 2 weeks before their period. During this time our ang2 levels are elevated. Your theory makes total sense to me and fits my body and symptoms and autoimmune history perfectly. Something else to note- I experience remission of symptoms every spring and summer. I have often thought this is due to the fact that I tan daily during this time and spend large amounts of time being exposed to direct sunlight which of coarse dramatically raises vitamin d levels. In 2010 my pots was about 70% improved. During that time I was on a immunosuppressive drug called plaquenil for my RA. I don't think that was a coincidence. I've been back on it for 3 weeks and am already noticing improvement. Well done on your research and theory. I'm a believer. Now, how to get mayo or vandy to research???

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Thanks everyone for the support and replies!

lieze, julieph85 yes also I think that's why during pregnancy POTS symptoms will alleviate because the body naturally boosts ACE2 enzyme levels. Also julieph85 you're right it might be related to the heightened sensitivity for catecholamines rather than a primary connective tissue disorder we have. Either way, I'm sure it's tied to the high angiotensin ii levels. I hope your IVIG treatments help you a lot, I recall you saying that your mayo clinic doctor was very enthusiastic so I'm sure it will go well.

Rama I haven't looked at losartan yet, but yeah there's gotta be more ways other than spironolactone for upping ACE2 activity levels. I'm wondering if it might be possible to just inject the enzyme directly as some research I read did so with mice. Don't know how feasible that is with humans though.

Cfmartin, I think your best bet would be to go to Vanderbilt, Mayo Clinic, or Cleveland Clinic. It was at Vanderbilt that they did the study with POTS/angiotensin ii/ACE2 enzyme activity tests. As for the autoantibodies for ACE2 enzyme, that test might not be available anywhere, but if you got someone interested in one of those three clinics they might be able to carry it out for you.

For now I think we should all get our vitamin D levels checked and see if supplementing that can do it for us. Maybe if we got to a doctor in one of those three research clinics they might be willing to try a medicine to boost ACE2 levels, but I don't think any doctor off the street is going to do that.

Oh and Rama, I had my vitamin D levels tested, I'm going today to see the results.

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yes also I think that's why during pregnancy POTS symptoms will alleviate because the body naturally boosts ACE2 enzyme levels. .

This is the case for many, maybe a majority. But in my case I became very sick w POTS DURING pregnancy, and was undiagnosed (although very mildly symptomatic on occasion) prior to pregnancy. I continued to be sick for the first several months postpartum, w POTS. Then I greatly recovered.

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yes also I think that's why during pregnancy POTS symptoms will alleviate because the body naturally boosts ACE2 enzyme levels. .

I agree with mom, mine started during pregnancy. Which leads me to believe ours is autoimmune

This is the case for many, maybe a majority. But in my case I became very sick w POTS DURING pregnancy, and was undiagnosed (although very mildly symptomatic on occasion) prior to pregnancy. I continued to be sick for the first several months postpartum, w POTS. Then I greatly recovered.

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Just been doing some research on autoantibodies to ACE2. IF . . . we have that - it promotes vasoconstriction and hypertension - there is a connection with connective tissue disorders with this. Some of the treatments are steroids, plasmapherisis and vasodiliting drugs (according to one study I read). It has allot to do with the renin/aldosterone suppression issues that some of us have. One study showed how the liver is also involved in this. (I asked someone else to post the studies - I'm not very good with the computer and afraid it might not come through.) I think I found my reason for having low renin and aldosterone levels and why the ARB was so bad for me. Got to look into this more. I just KNOW there has to be a reason for the kidney connection with low renin/aldosterone. Maybe the connective tissue things - autoimmune things - all could be connected to autoantibodies to ACE 2. (THANKS, Rama for clueing me into this. And, Jangle for bringing it up in the first place.)

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Thanks Jangle! I am scheduled to go to Vandi in July, I will add it to my list :)

And my 2nd pregnancy was also horrid - I'm thinking I have an autoimmune issue as well since I have Raynauds and possible Celiac (getting tested for the gene, I have been GF for years). And every woman in my family on my Moms side had thyroid and autoimmune issues.

Thanks again for all the info!

Claire

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Naomi, I can't explain why your vitamin D levels are low yet your angiotensin ii levels are normal. There can be many causes of POTS I guess, but from the study done by Raj, there was definitely a higher angiotensin ii in POTS patients than controls with subsequent lower ACE2 levels.

EDIT: also they don't have my bloodwork ready yet :(

Double EDIT: Apparently spironolactone is prescribed for acne. I have some acne, maybe I can get a doctor to prescribe it to me? Then I can report back the results.

Triple EDIT: Continuing with the ironic and confusing nature of POTS, spironolactone acts opposite of florinef's actions. Florinef is a MR agonist whereas spironolactone is a MR antagonist. Florinef helps POTS patients yet my theory would say that spironolactone should help POTS patients?

"???"

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best wy to upregulate ace2 is to block ang II with something like losartan

I am on losartan 100mg. and also on vitamin D, but I had high blood pressure, before I was diagnosed with dysautonomia, and because most have low blood pressure, (even though I had looked up this disorder before I was diagnosed), I just ruled it out as a prospect, because of it. I guess we are all different! I have asthma and other allergies, inflammation as well.

Thanks Jangle for your research!

To the ladies, menopause or hormonal changes, exacerbates dyautonomia terribly; I was my sickest through that period which was 7 years in all. I was only on my blood pressure medication at the time, and wasn't diagnosed, and thought I was dying. Estrogen does help with this transition. I had migraines, too, that I no longer have. I also take Flax seed oil, (Natural form of estrogen), which I believe helps with any inflammation in the body. I was originally recommended to take this for my eyes by my optometrist.

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