Was it mold illness all along?

[animalcule]

Well, I've gone from panic to ... acceptance and hope. The reaction to the mold biotoxin could be causing Chronic Inflammatory Response Syndrome. Here are (roughly) the first steps you can take that don't require a doctor to sign off on a lab test:

The first step is usually to get an ERMI test for you home/potential source of mold. They cost $150-250. Unfortunately, I have already spent money on Immunolytics mold plates, so I'm just going to do that test and see what shows up. It won't be as accurate/useful probably, but it should still show how many different types of mold is in the air in my rooms under given conditions.

Next, look at the symptom checklist of CIRS. If you meet 8 of the 13 criteria, it's likely you have CIRS, and you should take a VCS test.

The VCS test (visual contrast sensitivity test). You can take it free here (but only one time free): VCSTest.com: Visual Contrast Sensitivity (VCS) Test
If you fail the VCS test and you meet 8 of 13 criteria for CIRS ... you probably have CIRS.

Dr Shoemaker has a protocol for CIRS that includes taking Cholestyramine or Welchol, which will help remove the mold toxins out of the body, in a way that binders like clay or charcoal cannot.

Here's a run-down of the protocol: Steps of the Shoemaker Protocol | The Hoffman Centre

And a document explaining CIRS: https://www.survivingmold.com/docs/UNDERSTANDING_CIRS_EDITV2A.PDF

Now, there's the question of what do to about your living situation, and what to do with your belongings.... There are a few camps when it comes to mold illness. One camp believes you must drop everything and move and avoid mold at all costs + follow the healing protocol. Another camp believes that depending on your level of illness, and the level of mold in your home, you may actually find your current home environment livable (with some remediation/cleaning) after you begin the protocol, specifically taking cholestyramine. The idea is that panicking and throwing everything away and running to a new environment is actually quite stressful, and may set you back, not to mention you may end up running away from your home and into a home with worse mold problems. So, perhaps you only need to leave for a short while, get the mold in the house cleaned up, do the protocol, and see if you can tolerate your home once your internal toxin load has reduced.I don't know what this means as far as belongings go, but it does leave me a bit hopeful that at least some of my belongings, once properly cleaned, will be tolerable eventually.
Dynamic Neural Retraining System (DNRS) is something else I came across that some people have found helpful. The theory is that if you can retrain your limbic system, you won't be as hypersensitive to the toxins/stressors that once set off all of your health problems. It's not a substitute for cleaning up your environment or moving to a clean environment, but many people remain in a constant state of fight/flight after their illness, and so they're triggered by even minute amounts of the toxin, which normal people aren't affected by.

Here is a video that I found very optimistic. They're by carnivores (not going back down that route, but at least there are ppl in that community who are taking it seriously when carnivores see their health decline while on the diet, and they're trying to figure out why). One woman states that after she was treated for CIRS, she was able to eat dairy again, and even vegetables and all the things that carnivores say are evil. Refreshing.


View: https://www.youtube.com/watch?v=cbt7NhOpPmE&t=0

 

[frannybananny]

I second that.

For me it took months to feel better.
But moving out was the only thing that helped.

When I was on Madeira a couple months ago I noticed that my symptoms came back in certain hostels i stayed , they have a very rainy humid climate there, the perfect breeding ground for mold. So I suspect that I would get all the same symptoms again ,if I lived in a moldy apartment.

I think some of us are more susceptible to mold issues than others. I have a history of asthma and allergies as a child so that might be the reason.

In terms of recovery I think supporting the liver is the most important thibg to do.
It has to handle toxic byproducts of mold and fungal toxins called aflatoxins are specifically damaging to the thyroid and liver.

Hi Maurito! After following your posts for some time now I am surprised that in your travels you wouldn't choose to go to a desert/dry area of the world. There are many beautiful dry deserts and possibly could help your overall health if it is reacting to mold.

 

[Brooks Esq.]

- Lifelong low energy and fatigue.
- Mood issues. Depression and anxiety.
- Neurological issues. Memory loss. So much difficulty learning anything new that I began to despair over ever doing anything with my life, ever. Feeling like my brain had turned into a brick.
- Intense brain fog, increasingly feeling disconnected and floating through life.
- Mood swings, lack of information retention, constantly at loss for words.
- Inexplicable moments of hyper-fixation and rage.
- Hypersensitivity to noise and light.
- Hyper-reactive to everything.
- Itching eyes, at one point puffy, raw and red. Sometimes pain in my eye. Eyes seem drooping now in way they weren't before.
- Joint pain since I was 19 or so, including puffy, stiff fingers every morning.
- Fertility issues. Missing or irregular cycle. PMDD.
- Nightmares, waking up screaming. Difficulty breathing at night, but not diagnosed with sleep apnea. Waking up suddenly gasping for air. Shock-like feeling when I tried to go to sleep.
- Digestive issues, that I tried to tackle for years with dietary changes (including carnivore) but only seemed to end up more sensitive by the end. Intense bloating. Weight gain that I can't lose.
- Metallic taste in mouth
- Frequent urge to urinate (not UTI)

I grew up in a house that was renovated by my parents, as best they knew how. There was water damage and damage to the siding, and I don't know how well they remediated the internal damage, if at all. There was also a roof leak that was fixed, but water definitely got in (could see spots through ceiling), and nothing was done to address this bc "the attic seems dry now." As a child I was always tired, anxious, and had low tolerance for lights and sounds. As I got older, I went back and forth between that house, and a basement bedroom in another house, which was not well maintained and likely also had some mold. In college I lived in a run down apartment building and my childhood home. Due to many of the issues listed above, I moved back into my childhood home full time after college, as I struggled to function but couldn't figure out why. During this time I took at job in a second-hand store, sifting through musty donations, in a building that leaked every time it rained, with ceiling tiles that had water damage and visible mold, but I never considered it an issue. I knew there was something wrong with me, but I could never get an answer from doctors, and after years of struggling and trying things on my own (like extreme diets, thinking it was a food allergy), I began to give up and accept that maybe I'm just not a very capable person, and all of my other issues are psychological.

Over the pandemic, staying inside even more than before, everything worsened. This somewhat coincided with me going off of the carnivore diet, and every issue I had, I attributed to that. This is also around the time that I started getting vivid, sometimes gruesome nightmares, always terrifying nightmares. My weight ballooned. Breathing difficulties at night worsened. I felt so fatigued, every small task seemed daunting. I couldn't think at all. I began to resign myself to just being this way, chalking it up to character defects or childhood trauma or potentially autism.

But then... I got rid of this old Tempur-pedic mattress I'd been sleeping on... And I started to feel noticeably better, not 100% but noticeable. Maybe it was the memory foam causing me problems, I thought... So I got rid of the new memory foam mattress I bought to replace it, thinking that eventually maybe this one would turn toxic, too. I went to sleep on a mattress in my other bedroom - and a bunch of symptoms came crashing back, along with feeling like I'd caught a cold, and a strong metallic taste in my mouth. What was going on?

And then ... I went to clean out the bedroom closet. And I found a wall covered in mold. And I think, finally, after decades of barely living life, I've found the answer, or at least a clue.
I'm seeing my doctor soon to request a serum mycotoxin test. Hopefully she will consent. If anyone has any info regarding what other tests to ask for, or experience with mold illness, it is appreciated. I will update this post with the results of the blood draw.

I found the MyMycolabs test to be the best test on the market. Insurance does not cover it, you can order it yourself, and the blood tests from a standard medical practitioner are almost useless for diagnosing mold, with the exception of the Labcorp MMP-9, Trans Growth Fact. Beta 1, C-Reactive Protein cardiac, VIP plasma, VEGF Serum, Melanocyte Stimulating Hormone tests, which measure your body's response to mold indirectly. However, I will say that even the Labcorp tests may come back normal in the super sick. Additionally, stay away from urinary tests like the Great Plains Urinary Mycotoxin test. I hate urinary tests as they are misleading and inaccurate because the super sick will not be getting rid of mycotoxins in the urine, thus often providing the patient with a test result showing the direct opposite of what is really causing their troubles. The Mymycolab serum test tells you exactly what is wrong by identifying exactly which mycotoxin your body is fighting against. If I were in your position, I personally would take the following steps:
(1) get out of the mold environment entirely (always the first step, you will not heal if still in environment);
(2) wash all your personal items which may contain mycotoxins (clothing and fabrics in ammonia, hard items in ammonia or RMR-141). Never use bleach to clean mold!
(3) make an appointment with an integrative medicine practitioner specializing in mycotoxin illness if you can afford to do so;
(4) look into the Mymycolab test if you think it is right for you;
(5) start taking NAC+Glycine+Selenium+Silymarin (I take mine at night) followed by liquid bentonite clay by Great Plains taken at least an hour after (as it will bind to the supplements if taken too soon after). Make sure you are defecating at least once a day and use magnesium citrate if you have to, otherwise the toxins will reabsorb into your system; and
(6) avoid the mold forums on facebook like the plague, as those people are toxic and will only bring you down and make you feel like your situation is helpless and permanent (not all of them on there are like that, but 85% of the posts are usually depressing).

Mycotoxins are devastating, toxic mold illness is under-recognized by standard medicine because big businesses (like apartment complexes making millions in revenue) and insurance companies (usually worth hundreds of millions of dollars) buy off politicians and elected attorney generals to keep mold from being recognized as the toxic and deadly life form it is. This benefits their profits in so many ways. Mycotoxins are thought to be the cause of many different types of illness which are diagnosed later in life and only symptoms are treated. That said, it may seem like at times that you will never get out of this, but you can heal and your issues can be fixed. I know treating mold illness can be difficult and expensive (some people spend over $100k, and I know an attorney who is at $300k and counting), and there are a myriad of people that use toxic mold illness to profit and charge big money for useless treatments; often preying on people at their most desperate point. In my personal opinion (again, not medical advice) the best thing anyone who is suffering from toxic mold illness can do for themselves are steps (1), (2), and (5) (discussed supra), if they can afford to do nothing else on that list.

I wish you well in your recovery.
Brooks

 

[Michael Mohn]

Can you rent out your home, hop into your car and drive to a dry climate? Living in southern Spain for a year had big benefits for my health. I had mold exposure several times in my life and spending time in an dry climate helped the most turning around my situation quickly.

 

[animalcule]

I found the MyMycolabs test to be the best test on the market. Insurance does not cover it, you can order it yourself, and the blood tests from a standard medical practitioner are almost useless for diagnosing mold, with the exception of the Labcorp MMP-9, Trans Growth Fact. Beta 1, C-Reactive Protein cardiac, VIP plasma, VEGF Serum, Melanocyte Stimulating Hormone tests, which measure your body's response to mold indirectly. However, I will say that even the Labcorp tests may come back normal in the super sick. Additionally, stay away from urinary tests like the Great Plains Urinary Mycotoxin test. I hate urinary tests as they are misleading and inaccurate because the super sick will not be getting rid of mycotoxins in the urine, thus often providing the patient with a test result showing the direct opposite of what is really causing their troubles. The Mymycolab serum test tells you exactly what is wrong by identifying exactly which mycotoxin your body is fighting against. If I were in your position, I personally would take the following steps:
(1) get out of the mold environment entirely (always the first step, you will not heal if still in environment);
(2) wash all your personal items which may contain mycotoxins (clothing and fabrics in ammonia, hard items in ammonia or RMR-141). Never use bleach to clean mold!
(3) make an appointment with an integrative medicine practitioner specializing in mycotoxin illness if you can afford to do so;
(4) look into the Mymycolab test if you think it is right for you;
(5) start taking NAC+Glycine+Selenium+Silymarin (I take mine at night) followed by liquid bentonite clay by Great Plains taken at least an hour after (as it will bind to the supplements if taken too soon after). Make sure you are defecating at least once a day and use magnesium citrate if you have to, otherwise the toxins will reabsorb into your system; and
(6) avoid the mold forums on facebook like the plague, as those people are toxic and will only bring you down and make you feel like your situation is helpless and permanent (not all of them on there are like that, but 85% of the posts are usually depressing).

Mycotoxins are devastating, toxic mold illness is under-recognized by standard medicine because big businesses (like apartment complexes making millions in revenue) and insurance companies (usually worth hundreds of millions of dollars) buy off politicians and elected attorney generals to keep mold from being recognized as the toxic and deadly life form it is. This benefits their profits in so many ways. Mycotoxins are thought to be the cause of many different types of illness which are diagnosed later in life and only symptoms are treated. That said, it may seem like at times that you will never get out of this, but you can heal and your issues can be fixed. I know treating mold illness can be difficult and expensive (some people spend over $100k, and I know an attorney who is at $300k and counting), and there are a myriad of people that use toxic mold illness to profit and charge big money for useless treatments; often preying on people at their most desperate point. In my personal opinion (again, not medical advice) the best thing anyone who is suffering from toxic mold illness can do for themselves are steps (1), (2), and (5) (discussed supra), if they can afford to do nothing else on that list.

I wish you well in your recovery.
Brooks

Thank you for you advice, especially the part about not hanging around the mold forums… I don’t want to panic myself unnecessarily, or read anything that will make it seem hopeless. I don’t think it’s a hopeless situation.

Unfortunately…. I did use bleach, when I first found the mold, followed by cleaning vinegar. I should have done more research but I just wanted it gone. I almost wish I didn’t remove it at all, so that I’d still be able to sample it.

I hope to do 1) in a couple of months, I can’t really afford to move now but I might be able to do something then. I’m trying to spend most of my day outside, and only sleeping at my house. I really noticed a difference in mental clarity after doing this for a couple days, and a drop box in it to indoors. In the meantime I can do binders and other supps. I know this isn’t ideal, but I listened to a video of a woman with CIRS from mold, and she said she began to feel better, even in her house with some mold. Eventually she did move out and remediate, but as a half measure it can still be helpful apparently. Again, trying not to panic and make rash moves, or worry myself into more illness when I can’t move out asap.

I’ve been washing all of my clothing with borax and storing it in plastic bags, so at least at the beginning of the day, I’m not wearing clothes with mold.

 

[animalcule]

Can you rent out your home, hop into your car and drive to a dry climate? Living in southern Spain for a year had big benefits for my health. I had mold exposure several times in my life and spending time in an dry climate helped the most turning around my situation quickly.

Kinda feels wrong to try and rent a house out that has mold issues :/

 

[Mauritio]

Hi Maurito! After following your posts for some time now I am surprised that in your travels you wouldn't choose to go to a desert/dry area of the world. There are many beautiful dry deserts and possibly could help your overall health if it is reacting to mold.

I choose my destination mostly by where I feel like going. And it wasn't like it ruined my time on Madeira, I still had a wonderful time ,it was one if the most beautiful places I've ever seen.
The issues I mentioned was only in certain places (inside), other places were fine.
Thanks for your concern though:)

 

[Michael Mohn]

Kinda feels wrong to try and rent a house out that has mold issues :/

You can set fire to your home and cash in the fire insurance . Just kidding. You have to escape this place or you will go down with it. Two years after leaving my last moldy place I still have issues. Getting convid last year didn't helped neither.

 

[mamaglee]

Same situation. I feel like I have zero brain capacity, which makes it difficult to find, interview for, and then actually hold down most jobs. I work for myself, but I don't make much money, definitely not enough to move. Which means the cycle continues, my capacities deteriorate, and my health declines, going further into the hole.

Here is a somewhat optimistic video about a man who used Dynamic Neural Retraining Systems to help heal from mold illness:

View: https://www.youtube.com/watch?v=y7TAF46O8JE&t=0


He does say that you have to leave the environment with the mold in order to heal, but he offers some optimism compared to people who talk about dealing with side effects for years, and being hyper-reactive to everything once they get sick from mold.

As far as throwing away belongings goes... I'm very unhappy about that. I have a small library of books that, according to what I'm reading online, I will have to throw away. I can't even sell them, or donate them... just throw them away. I could handle leaving behind almost all of my possessions, but the fact that I may have to trash them, and can't even sell some of the nicer stuff bc it is contaminated... that's hard to swallow.

I've read stories about people going to live in tents or RVs... I actually think that may be more stressful, long term, not having any place to call home. One possibility is finding seller-financed land, and then building tent planform and canvas wall tent. If you have a source of water, and a wood stove inside the tent, it actually might make for a pretty nice place to live... Those are my thoughts as far as solutions.

I did the DNRS program with Annie Hopper in person. I have heard many stories about success with these, and also EMF. Well done to you.