Mold and mycotoxins

[TheBrain]

On 11/23/17, I finally collected a sample for my urine mycotoxins test through Great Plains Laboratory. I posted my very positive results here: viewtopic.php?f=2&t=3957

After so much doubt, I do, indeed, have CIRS.

My local functional medicine physician's assistant (FM PA), Teresa, ordered the test. This Great Plains test is new. It cost me $299 out of pocket (with my provider discount) and tests for seven mycotoxins. My understanding is that RealTime Labs previously tested for three mycotoxins, but now they test for fifteen. I don't know what they charge now. I've been told that insurance doesn't cover urine mycotoxins testing.

Because of my mold-susceptible genetics, Teresa recommended I have three far infrared (FIR) sauna sessions prior to collecting my urine sample. She said that would help release mycotoxins from my liver, if they are present.

Teresa was shocked by my test results. She would expect someone with such high levels of mycotoxins to be much sicker than I am—although I'd say that the fact I can't work is an indication of how much I'm struggling with my health. Technically, I'm retired, but my intention is to become a published author and web writer. I currently don't have the mental stamina and physical energy to make much progress in that regard.

I now have the diagnosis of "cognitive impairment, mild."

Instead of going the route of compounded cholestyramine (CSM) (at a cost of $300 per month), I took Teresa’s recommendation and bought a High Tech Health far infrared (FIR) sauna to remove the mycotoxins (and heavy metals and other nasty substances) from my body. I’m also taking oral s-acetyl glutathione ($85 per month, out of pocket) and activated charcoal (a low cost binder that's not nearly as effective as CSM) to support detoxification.

I have an MRI with NeuroQuant scheduled for January 9th but am waiting for my primary care physician (PCP)'s office to get the prior authorization from my insurance company. Hopefully, that will happen on Monday (the day before my appointment). This past week, we got 3 inches of snow here in coastal North Carolina and the roads are still messed up. Businesses were closed, likely also my PCP's. If the authorization doesn't happen in time, I'll reschedule my appointment.

Meanwhile, I've done two sessions in my new sauna. My husband is doing sessions as well, hoping that it will help with his high blood pressure (which is not yet responding to a prescription he started recently, even at a double dose of it). Previously, I ended up doing a total of nine FIR sauna sessions at a local clinic.

Time will tell if I end up needing to see a Shoemaker-certified practitioner.

[TheBrain]

BTW, I have no recollection of starting this thread nor of what was discussed. I don't recall Dr. Bredesen recommending to my former FM MD that I do the urine mycotoxins test. When my FM PA recommended I do a urine mycotoxins test, I thought it was the first time I had ever received that suggestion.

I started this thread 15 months ago. Shouldn't I remember such details? If it had been five years ago, okay, but 15 months ago? As I state in my signature line, I used to have such a memory for detail. I hope it comes back.

[TheBrain]

Alysson, are you referring the RealTime mycotoxin panel? I had that test done (about $700) and it was negative, even though I evidently do have a mold problem. I’ve done some reading about this and it has been suggested that people with mold sensitive HLA-DR/DQ haplotypes may not secrete mycotoxins in their urine and can thus get false negatives on the test. This issue was discussed in a Townsend Letter on Mold and Mycotoxins (http://www.townsendletter.com/July2014/mold0714_2.html). My doctor didn’t mention anything about this, and I don’t know if my results are accurate, but (like you?) I do have a genotype that is likely to hinder my ability to excrete these toxins.

LAC, I'd like to make sure you see that I did test positive on a urine mycotoxins test (please see my longish post from earlier today). I collected my sample after doing three far infrared (FIR) sauna sessions. My functional medicine physician's assistant (FM PA) recommended I do them to ensure that my test would be accurate, given my mold-susceptible genetics.

If you have the time and inclination, I'd love to hear how you are doing on your mold/chronic Lyme healing journey.

[TheBrain]

Hi Alyson, As a type 3 in the middle of addressing mold exposure, one thing jumped out at me that you wrote. You said that you and your husband cleaned up some mold you found after a vacation. I think that would be a no-no given your genetic sensitivity. In my case my numbers are very similar to yours my tgf beta 1 is about 4600. 15 yrs ago I went into a vacation home with a bottle of bleach to make sure the place would be safe after the carpet had been removed. The home was being remediated for mold. The day after that I had non stop post nasal drip. So I can pinpoint exactly when I was exposed and after a number of years and research I got my symptoms under control and just last year found that I have more to worry about then mucous and sinus infections. My point is one exposure can cause a lifetime of problems for sensitive people.

Maureen, I later talked to my husband about the mold we had in our first home. He is certain that I didn't help with the cleanup of the mold on that one wall in our walkout basement. And to be honest, I don't have a clear memory of helping him. Given how we have divvied up various responsibilities in our 28-year marriage, I'm sure he's right. He would take care of the icky jobs like that.

That said, we didn't have proper mold remediation done at the time, at least in terms of addressing any mold components that might have spread throughout the home.

Also, for five years as a child, I lived in a home with a basement that flooded three times. My father ended up getting a sump pump installed, and that took care of any additional flooding. But my three sisters and I played in that basement. Our toys were down there. However, I don't recall getting sick after any of the flooding incidents. I continued to get terribly ill from strep throat once or twice a year (up until I got my tonsils out at age 16) and took penicillin for ten days each time.

I recently learned that penicillin is a mycotoxin!

I had a couple of other mold exposures in recent years in the previous home my husband and I lived in for 13 years. One of them I didn't know about until we were getting the home ready for sale. I cleaned out the cabinet under the sink in the master bath, and the shelf lining was heavily spotted with mold. I don't know if the mold was alive or dead, but I removed the shelf lining and cleaned the cabinet.

So how are you doing on your mold illness journey? I'd love to hear an update, if you have the time and inclination.

[buck3Maureen]

Hi Alyson,
Fellow type 3 fighter! When I wrote that post I was going to a Shoemaker trained doctor and hoping to improve my numbers. After three or four months I got discouraged. The medicine (colyster... ?? something) I had to take three times a day and it was supposed to pull toxins out of my body. As far as I could tell it did nothing but stress me out because I had to take it on an empty stomach. So trying to take a bunch of supplements with food and do intermittent fasting and take this awful stuff was driving me crazy. I tried to find people on the internet who were fans of Dr. Shoemaker and could give me some encouraging anecdotal evidence that they had improved with his methods. When I came up short and my Shoemaker doctor had no success stories, I stopped working on it. I am open to going back to working on this, but only if I find others who have had success.

About a month ago I read an article in the Life Extension (they sell lots of supplements) magazine about something that they pull out of milk thistle called silymarin. The article was of interest to me because it supposedly helps with COPD and I have a brother with this. While reading the article I found that they claim that it reduces tGFbeta1. I am very clueless about all of this but that jumped out at me and I think I may try taking it and see if anything changes.

Hope you are having more success with this.
Maureen

[LA18]

Allyson, I read your posts about your positive mycotoxin test, which I found very interesting. I suspect that I’m in the same boat and that I got a false negative on my RealTime test.

I’m so sorry that you have to deal with this, but glad for you that you have been able to pinpoint the likely underlying cause of your issues. I can totally identify with the memory scares. I’m the same way – used to have a phenomenal memory, known for it, and now…. I do find some benefit from maintaining ketosis, but I seem to need a higher serum ketone level than others who have posted about this in order to function.

I’m not sure how I’m progressing in terms of my CIRS treatment, due in part to a recent exposure to mold at work. I have now vacated that building (huge pain and questionably viable as a long-term solution), only to discover some mold in my furnace at home, despite having it cleaned by a supposedly reputable mold remediation company in my area.

One thing I’ve learned – have someone else test for the effectiveness of any remediation. They came back and redid the work, but only because they weren’t going to be paid in full until the independent tests came back negative for mold. I run air cleaners continuously at home, so I don’t know how much of an issue this has been. The mold level wasn’t too high (probably fine for someone not susceptible to CIRS).

What was frustrating is that the owner of the company I used isn’t knowledgeable about CIRS and thus uses the same set of standards across the board. He was not happy about having to come back and redo the work, felt it wasn’t necessary, etc. The owner of the company I had do the retesting (they don’t do remediation) is CIRS-aware and thus understands that my needs are not those of the typical individual.

One thing that has helped at home, I think, is the use of the air purifiers. I doubt my house will ever be acceptable (after three remediations….), and I’m planning to move, but it’s much better than it was initially, and with the air cleaners I think I’ve been able to compensate for much of what’s left.

Also, I’ve been taking Welchol as a binder for a year and a half now. It seems to be working, at least now that I’m not being exposed at work. My recent TGF Beta 1 level was in the normal range for the first time ever. I was heading that way, then had the exposure to mold at work due to flooding and it went right back up. My other numbers (VEGF, etc.) also got much worse. I feel like I should be testing more frequently, so I can have a better sense of if/when I’m being exposed, and need to talk to my doctor about that. My insurance does cover these tests, and my neuroquant was covered. The doctor who ordered that put Lyme disease and cognitive impairment as the diagnoses. I don’t know if that made a difference in terms of payment, though.

I’ve tried the compounded cholestyramine and found it to be very hard on my gut, due to its sand-like quality. Too much so to tolerate. The Welchol, in pill form, is covered by my insurance, and I am able to tolerate it, so I’ve just stuck with that, even though it is so much weaker in terms of binding capacity than cholestyramine.

I will say that after the one month that I did use the cholestyramine my numbers did improve, which makes me think that may be a better option for me, but given my gut situation, and the cost, I’m sticking with the Welchol for now. Unlike the regular (uncompounded) cholestyramine, which I could never take, the regular Welchol does not have anything in it that bothers me. I think, over time, it has resulted in some improvement in my memory, but it’s hard to say for sure given a number of confounding factors.

Good luck with your treatment, and thanks for posting about your experiences. It’s good to know that things like the infrared sauna are so effective. That’s great that you were able to get one for your home. I’m going to try to find a local place that has one.

Maureen, it sounds like you were taking cholestyramine. I also found it to be pretty gross. One advantage of Welchol is that I can take it with food. The cholestyramine powder was really hard for me to choke down, and it was almost impossible to get in the four doses per day.

Liz

[Jan]

Ladies ... {{{{{ all of you }}}}}, to support you in all that you are dealing with. I am impressed and inspired by the strength, grit, and determination you all show.

[slacker]

I recently learned that penicillin is a mycotoxin!

Hey Brain;

It appears that the ubiquitous Penicillium chrysogenum produces myotoxins, but is the medically distilled antibiotic penicillin also one? Not necessarily so - I could not find a reference one way or the other after a brief search. Of note - Penicillium chrysogenum is included in the ERMI test, but not in the HERTSMI-2, which indicates to me that it is not a main player in mycotoxin illness. From my amateur perspective.

Here is an cartoon of how penicillin is made. Doesn't answer the question of whether or not it's a serious mycotoxin. It has however saved a lot of lives since discovered...food for thought...

[TheBrain]

I recently learned that penicillin is a mycotoxin!

Hey Brain;

It appears that the ubiquitous Penicillium chrysogenum produces myotoxins, but is the medically distilled antibiotic penicillin also one? Not necessarily so - I could not find a reference one way or the other after a brief search. Of note - Penicillium chrysogenum is included in the ERMI test, but not in the HERTSMI-2, which indicates to me that it is not a main player in mycotoxin illness. From my amateur perspective.

Here is an cartoon of how penicillin is made. Doesn't answer the question of whether or not it's a serious mycotoxin. It has however saved a lot of lives since discovered...food for thought...

Hey Slacker,

Thanks for the food for thought.

I found the following from Clinical Microbiology Reviews at http://cmr.asm.org/content/16/3/497.full:

While all mycotoxins are of fungal origin, not all toxic compounds produced by fungi are called mycotoxins. The target and the concentration of the metabolite are both important. Fungal products that are mainly toxic to bacteria (such as penicillin) are usually called antibiotics.

The word "mainly" has me wondering what else these fungal products are toxic to. And does my body, which has trouble excreting mycotoxins, care whether we call a toxic compound from fungi a mycotoxin or an antibiotic? What if all or most of the penicillin I took as a child accumulated in my body and was never excreted? What might be the consequence of that?

Even with the penicillin being purified before use, I don't know how much that would help if it accumulates in mold-susceptible people.

For most people (except those who develop an allergy to penicillin, like my husband has), I bet penicillin is fine. Well, I guess another consideration is how it decimates the gut microbiome, especially with repeated use.

In hindsight, I believe that my first food sensitivity was to dairy and that my strep throat infections were triggered by that. If I had known about the dairy sensitivity and eliminated dairy from my diet, could I have avoided all those infections and all that penicillin? Maybe so. Of course, I'll never really know. But I had a root cause that was causing the repeated infections, and it wasn't addressed.

[TheBrain]

Hi Alyson,
Fellow type 3 fighter! When I wrote that post I was going to a Shoemaker trained doctor and hoping to improve my numbers. After three or four months I got discouraged. The medicine (colyster... ?? something) I had to take three times a day and it was supposed to pull toxins out of my body. As far as I could tell it did nothing but stress me out because I had to take it on an empty stomach.

Hello fellow type 3 fighter!

Thanks for the update. I agree with Liz (LAC) that you're probably referring to cholestyramine. I've heard it's challenging for many people to tolerate (including Liz, obviously) and especially if you're not seeing any improvement in symptoms or blood markers.

Advice I came across recently is to "keep working it." Don't ever give up. If Plan A doesn't work out, find Plan B. If Plan B doesn't work out, find Plan C. If your Shoemaker-trained doctor doesn't have any success stories, either he/she is very new to the protocol or isn't very good at implementing it. Maybe find another doctor to work with (I know, not such an easy task) or consider trying Welchol.

Maybe that one supplement you mentioned could help, but what would be your next step? I think it would be difficult to try to piece together a protocol for yourself without professional guidance.

It's too early for me to report success yet, but I will say that with using the FIR sauna, I am needing to apply deodorant only once a day (no longer twice a day). Also, I haven't used an aluminum-based deodorant for three days, and I've not gotten stinky. And that's with doing a lot of housecleaning in preparation for a family visit this coming weekend. I see this shift in deodorant usage as a positive sign.