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db2504

Mold And Pots

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Hi all, i hope the holiday sesson finds everyone happy and able to bear their pain to celebrate with family and friends. I was wondering if there is anyone or anything documented that has found mold to be a cause or exacerbation of symptoms of POTS?

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That's actually something I'm exploring right now as well. Both my spouse and I developed POTS within the past 2 years, and we were both previously healthy. We also had a roommate who developed POTS around the same time too. Others on the forum suggested we look into mold toxicity, and we do know we were living in a water damaged, and extremely moldy, building right around the time I officially got diagnosed with POTS.

Additionally, I've had two big-name POTS doctors tell me there hasn't officially been any scientific literature showing a correlation between mold and POTS, but they've had enough patients who were exposed to it right before they got sick that they can't say it doesn't at least trigger POTS, or make it worse, in susceptible people. They told us to go through testing our house and seeing an environmental medicine specialist. Mainstream medicine largely ignores mold exposure, but my POTS doctors believe there simply hasn't been enough legitimate research done to know exactly how much of a role mold exposure plays in various illnesses.

They've sent us to a reputable physician in the area who actually specializes in mold exposure & biotoxin illness, and we got our house tested. We are also supposed to see a pulmonologist (if you have a cough, as we do, that could be a big indicator, and some scans can catch mold issues in the lungs). We were also sent to a toxicologist, which would have probably been a great idea, although this particular toxicologist didn't believe POTS was a real illness, so he didn't look into anything. He also told us that mold exposure illness is a myth and doesn't exist - says even severe black mold infestation will only cause allergies, nothing more. I talked to another toxicologist later who said mold absolutely does cause severe illness (including neuro issues), and wouldn't be surprised if it causes POTS. So the opinions among the medical community seem pretty divided on this.

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Dear ks42.

You have a very convincing case study, and you are very level-headed about this (especially given the clamor on the web, which may be deserved...).

My (pretty severe) dysautonomia was apparently caused by drug toxicity (antidepressants) and subsequent abrupt withdrawal --- even my big cheese dysautonomia specialist thinks this is the case. This is next to nothing in the literature addressing this either.

A lot of the research on neurotoxicity of environmental factors and drugs is in its infancy. Consensus is out there that research funding is limited because of liability issues down the line. It is interesting the only data I found supporting my experience are from Italy!

Yet when funds are finally released, findings are interesting. I read that most cases of Gulf War Illness (which often includes dysautonomic symptoms) --is in fact caused by drugs administered to servicepeople to undermine the effects of nerve gas.

Apparently, about 25% of the population (and all of those with GWI, none without it) have a gene that rendered this medication neurotoxic. (Not to say that environmental factors in the gulf were not also neurotoxic).

Makes me wish I could have a gene study....but goes to show what can be found with the right science and science funding....

Until then, the best news I can share with you is I was told dysautonomia due to toxicity can be alleviated and even reversed with time once the toxins are removed. My doctor did stress it is a slow process.

I appreciate how hard you have worked to understand your illness....have you thought of writing up your experience for a wider audience?

Meanwhile, I hope all three of you improve soon!

Sylvie

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We moved to a new place 2012.I had my first pots crash fall 2013, we found mold downstairs in our basement summer 2014 and moved into a newer rental with ac. Is it the cause? Prob not, but I think it's a puzzle piece to my health

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db2504 - I forgot to post a link to this thread, it's one I started about both my spouse and I having POTS, but there are a lot of helpful comments in it regarding mold exposure. Hopefully there's something in there you find helpful: http://forums.dinet.org/index.php?/topic/26926-pots-occurring-in-multiple-unrelated-members-of-the-same-household/ I'm actually seeing a Shoemaker-trained physician right now, and have had some really helpful testing done (although keep in mind, Shoemaker's work is not considered valid in the eyes of some medical professionals).

Sylvie33 - very interesting about genetics and gulf war illness. I'd heard quite a bit regarding the Mestinon and how it was thought to be toxic, then that was debunked, then they went back to the original toxicity theory, so it makes sense that perhaps genes could play a role. Some researchers have identified certain genes they think make people more susceptible to illness from mold exposure, and to developing chronic infections, but information on that is still in its infancy.

Yes, I've thought of writing up all of my experiences - especially since it's an unusual case with multiple episodes of POTS stemming probably from the same source - for a wider audience. To begin with, I'm considering at least blogging about it, then seeing where things go from there.

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Thank you for your replys. The reason I mentioned this was because I just found out there were many homes in our development that have water/mold problems and mine is one of them. I thiught i had read something about a correlation with POTS and mold. I will mention this to my daughters doctor bc as of yet we have not found the cause of my daughters POTS.

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I moved into a room that was not heated for a few winters so it had developed a lot of mold on the walls, top to bottom. Lots of black stuff.
I washed with windex a few times, sandpapered, repaired the wall with the window and prepared to primer and then painted it.

Like Bigskyfam, I don't know if it is the cause.

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Mold is prevalent in a lot of homes across the globe. I don't know if I see the POTS-like effects in a great number of people. And, thinking about the genetic tendency to react to mold, I think you would see family clusters coming down with it because of the shared genetics. I wonder how many of us here have at least another family member that has POTS(and not due to EDS or other known genetic/metabolic reason) (I am the only one in my family)

Ks42, I think your group IS an anomoly, and most likely pointing to something environmental, such as pesticides, etc.

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Say what you want, but my symptoms started in May 2012, which was during the 1 month we had tremendous mold growing all over our apartment. My roommate moved the dryer and the venting hose dislodged, causing steam to go all over our apartment without anybody knowing. Mold suddenly, seemingly, sprung up overnight.

I have never been the same. I was the picture of health, and now I can barely get out of bed. Whether or not mold caused this, I don't know, but the timing is pretty **** confirmative in my opinion.

I've had urine testing by RealTimeLabs and tested positive for both tricothecenes and ochratoxin. There are studies out there relating chronic fatigue with mold exposure, with the control group (non-exposed) showing absolute zero levels of mycotoxins in urine and those exposed and with symptoms with positive results.

I don't know if this test means anything or not, but it's more information to add to the pile.

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onearth - I tested positive for mold mycotoxins in my urine as well. My TGF beta 1 (blood test) was off the charts high, which isn't completely specific for mold illness, but is often seen in patients with mold toxicity. I also test positive for a highly mold susceptible genotype. They are looking for different molds in my bloodstream through FDA approved, science backed blood tests, and I'm waiting to find out about lung scanning, since the pulmonologist I spoke to said he diagnoses a lot of cases of mold exposure through visible mold deposits in the lungs. I'm still not 100% convinced mold is the only issue with my family's POTS, but we've ruled out a lot of other stuff so far, so it's definitely still on the table.

sue1234 - the way it was explained to me is that there are hundreds of strains of mold, but only a few (maybe even only one or two strains) are neurotoxic enough to cause POTS, so perhaps that would account for the fact that many people have mold issues, but not all of them have issues with dysautonomia. And of course, if there's genetic susceptibility, that would make it even more variable. One of my POTS docs is treating quite a few families that are sick and don't have EDS or other metabolic abnormalities, although it's typically blood relatives (siblings or a parent/child combo). I think I'm the first case any of my doctors have had where there are non-blood related family members who got POTS at the same time though. POTS isn't really epidemiologically tracked, to my knowledge, so it seems as if we simply don't know enough to draw any real conclusions about its genetic patterns (or lack thereof).

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I haven't had a TGF beta 1 blood test; that's going to be next for me. Doctor did do basic blood work + culture and no mold showed up in my blood, but I'm wondering now what they actually tested for, how in depth it was, etc.

Do you react to food? Higher carb foods make me feel poisoned. I've had stool tests that were negative for fungi I used gdx for this but I'm not sure if this company is credible or not. I've never had a problem eating in my life; always thin, fit, and able to eat whatever I wanted. Now I can't have a piece of bread without feeling like I just drank a gallon of drano.

I've also found the supplement "molybdenum" seems to help symptoms. Supposed to bind to the toxins.

Who do you see to test for this? A toxicologist? Or is this your POTS doctor? Sorry if you already mentioned it, my brain fog is thick right now.

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oneearth - yes, I do react to carbs. I can't have simple carbs at all. I actually found that by eliminating them, I improved my POTS greatly. The other interesting thing I forgot to mention: research has shown that mycotoxins can impair our ability to metabolize and use vitamins B1 and D3, and interestingly, various blood tests have shown I am low in both. We've ruled out genetic, dietary, or other causes, and my spouse is also low in both of these as well. We both now take B1 and D3, which has really actually helped improve the POTS itself. I do know that my D3 and B1 tests were normal before I developed POTS two years ago, so it's something that happened suddenly.

The only red flag is that all of the other tests in the mold panel that they typically run were normal. Most people who have urine mycotoxins and high TGF beta 1 tests have altered MSH, VIP, complement levels, and a bunch of other abnormalities, but mine (and spouse's) were all within normal limits. I'm still waiting on the MarCoNs nasal swab test results, though. Right now, based on the test results we do have available, doctors think mold is probably a factor, but not the only factor, contributing to illness. Especially since I have a really weird history of lyme and other chronic viral / bacterial infections.

I've had stool tests for fungi that were negative as well, but some of the docs I've worked with said it's really too hard to culture fungi in stool, especially from mold patients, so the results are rarely reliable, even if it's from a reputable lab.

Molybdenum might be something to look into, I seem to have no issues with that as I've taken it before, so I might bring it up with my doc. I was taking charcoal regularly (which helped with certain symptoms) and they are now switching me to Zeolite. Can't take cholestyramine because it causes digestive issues for me.

So, as far as who is testing / treating me for this.. it's been a little bit of everyone! My POTS doctors (I have two of them right now because our case is so complicated) both suggested mold as a trigger. They told me to get my current house tested and referred us to a pulmonologist who is well versed in fungal issues / mold exposure patients. My cardiologist also picked up on the mold possibility and sent us to a toxicologist. Eventually, though, we got the name of an MD who specializes in biotoxin illness. I believe she has a background in toxicology, but basically right now only treats mold patients. She is familiar with Shoemaker's work but in my opinion, diagnoses and treats a little more scientifically and safely than some of the other docs who follow Shoemaker.

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Do you mind if I get her name? I'm willing to travel if that's what it takes to find a good doctor. Most out here won't even entertain the idea of biotoxin/mold illness and trying to argue with doctors isn't possible when I'm literally stumbling into the office because I'm so sick/fatigued.

I was wondering where the mycotoxins in the urine might be coming from. They are biproducts of mold, so they have to be coming from somewhere. If blood tests are negative from mold then the only other place it would be is in either tissues or digestive tract. Possibly digestive tract, which would make sense since carbs would feed the mold, produce the toxins, etc.

Have you had liver panels done? I don't drink, but my liver enzymes are always slightly elevated. Wondering if this is because it has to filter out all the toxic sludge that is/might be produced by whatever is affecting my body (mold?).

I also noticed that the higher carbs I eat (especially simple carbs like you've mentioned), the more dehydrated I seem to get. I can go all day without drinking water on a low carb diet, but the minute I start eating white bread, potatoes, etc. then I'm suddenly craving tremendous amounts of water. I've been tested for sugar in my urine (like a diabetic would have) but it has never been positive. I don't know what to make of this.

Lastly, I've heard about zeolite too. I was thinking about trying it after a suggestion by one of my doctors, but it came in a spray form and was mixed with colloidal silver. I've read some horror stories about colloidal silver being deposited into skin tissue, permanently affecting the pigment, so I'm afraid to try anything with that in it. Some of these people are actually silver from taking silver supplements. Maybe I'm overreacting but I don't need any more problems at the moment.

Glutathione, N-acetyl-cysteine, and curcumin were things that were offered to me in the past, but I'm so supplemented out I'm literally done with all of it. This and the cost has turned me off most self-testing and diagnosis. I think at this point I want a verifiable, scientific, viewpoint rather than continuous guessing-and-checking that leads me nowhere.

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I hear you! I've had a lot of people recommend a lot of supplements that would have been very expensive and, as I found out later, would have been unlikely to help.

Yes, my liver enzymes were slightly elevated for pretty much the entire first year I was sick. They started going back to normal after that, but I haven't had them tested in awhile.

It's been explained to me that looking for mold itself in the blood is also very hit or miss, because it's the mycotoxins (mold byproducts) that get into the circulatory system, rather than the molds themselves (although rarely people do turn up positive, which is helpful).

I'll PM you with information on my doc. Actually, I might have a few names for you, since I've lived in 3 different states since I got sick!

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This is just a quick note. Recently we discovered I have some calcification in soft tissue. My research on this may indicate my use of Vit D without Vit K and magnesium could potentially cause this. I never could get my Vit D levels up to desired level. Maybe this was a compensatory thing. Seems I may have issues with higher calcium or inability to moderate. Having MCAS, and GastroCrom being one of my best meds for this, makes sense. It is a mild calcium channel blocker.

My latest discovery is I too got a mold exposure that has me in a flare. I'm positive with high MMP9 and VCS study showing positive. I even took it one step further and had a thyroid nodule biopsy and it was positive for a type mold/fungus that causes tumors in the body. We are trying to sort what next. I'm doing cleanses and did 3 weeks of chlostrotyromine. The whole time on it I had horrible headaches. I also have protozoa issues and that complicates the issue. I've had the thyroid nodule and menigioma and other tumors for over 8 years. But this latest exposure to mold for going on 2 years put me over my threshold. So all my symptoms are rather intense at the moment.

Issie

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Sorry things are so bad for you right now Issie, I hope you can see some improvment soon.

I just recently was urged by a friend to look into mold exposure and they passed along this video link: https://youtu.be/6NoKX9GvBR0

Its an interview with Scott MacMahon about mold. Would love to hear anyones opinion on this as I'm not to far into researching mold myself. Thanks.

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Things are improving with my detox and mold treatment. One great improvement is my eyesight. Not only is my vision and astigmatism improving - but my brain fog and energy levels are too. 

Issie

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I think there is a definite link between mold/mildew and dysautonomia. I was fine before moving to a house with black mold. Then I was bedridden for 3 years and almost died twice. I developed thyroid problems, tachycardia and blood clots in my lungs. I moved to an apartment and got much better. In fact, I was able to stop the beta blockers. I went back to normal. Then I moved to another house with water damage. Now my blood pressure is sky high, and I'm 158 bpm even while sleeping. 

It is appalling that there aren't more studies on medical conditions and mold illness. But then I guess that could potentially impair a very big industry.

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