Questions re: mold testing, labs, treatment

[Gingergrrl]

I would also be interested to know the name of this lab @Ema if you know of it.

Me too please!

 

[Ema]

Me too please!

I sent an email asking and will definitely post when I hear.

 

[oceiv]

I did use that company years ago. I can't remember the exact cost, but I think it was a few hundred dollars, and I have heard that the price of the ERMI has gotten cheaper since then.

As I understand it, mold allergies are a separate issue from mold poisoning. So as far as I know, they aren't related to your HLA haplotypes. I've known people with mold poisoning who had mold allergies, and people who didn't. Similar to the general population. Again, anyone else feel free to jump in on this.

Thank you for the old price on the mold testing and for distinguishing between mold allergies and mold toxicity.

I'll look at http://www.mould-works.com/ too. I had no idea building mould was spelled with a "u."

Q: Why do you spell mould with a "u"?
A: Scientists in the field of micro-fungi often refer to species that are found in homes or commercial buildings as "moulds". Since our driving principle is sound science, we felt it appropriate to use this spelling.

Spellcheck doesn't know either.

 

[Forebearance]

@ociev, I was assuming that the retired professor who runs Mould Works might be an English guy. lol
It's the way the English spell it.

 

[Ema]

@Ema Yes would love to know the name of alternate lab and also the name of the Lab Corp test.

@MCRobbie

The name of the alternate testing lab is BioTrek Labs in Atlanta. Their test panel is $450.

I'm having the kit sent to me so I'll hopefully know what all is tested for that price in the next few days. It sounds like from what her nurse said that there are several different panels, probably all at different prices.

Maybe someone who is familiar with the RTL testing can tell how the sample report compares to their report?

http://biotreklabs.com/medical-mycotoxin-sample-report/

 

[MCRobbie]

Thanks @Ema!

 

[MyOwnOpus]

Dr. Brewer is my doc and I am sending in my sample to RTL tomorrow. Will provide an update here when I get the report back to see how it compares.

 

[Forebearance]

Welcome, @MyOwnOpus ! It's nice to have you on the forum.
Forebearance

 

[Forebearance]

Hi @Gingergrrl,
Here's my reply to your question about what worked for me to treat mold poisoning.

I tried cholestyramine and phytosterols and they both worked well at removing mold toxins, but I couldn't handle the side effects, so I ended up taking soluble fiber of various types. I've been taking it for years now. It works for me.

There's a huge overlap of things that help ME/CFS and help mold poisoning. I take anti-inflammatories like Advil to sleep at night, antioxidants like grapeseed extract, resveratrol, milk thistle, and every mineral I can get my hands on.
Molybdenum, magnesium, manganese, and potassium have been especially helpful, because they have helped me detox. Calcium helps me sleep without using sleep meds.

I like Flor Essence detox tea a lot because it's very gentle. I am super sensitive to most things that detox a person.
Garden of Life Raw B complex has been helpful. It's what I take to help with methylation. I also take Egg Yolk Lecithin, and a balance of EFAs in the form of fish oil and evening primrose oil. I drink over a gallon of water and other liquids a day, to keep stuff moving through the kidneys, and lots of vitamin C to keep things moving through the bowels. (Sorry to be graphic, but Rich VanK mentioned during the early days of the methylation protocol that we should be pooing at least three times a day when detoxing, and I try to keep that happening.)

There are SO many things you could take to help detox mold toxins. I'm sure I'm forgetting some of them. Different things seem to work best for different people. Maybe other people will have suggestions, too.

And of course, mold avoidance played a big part in helping me detox and feel stronger and more energetic.

I hope you find the treatments that work the best on your particular body. It takes a lot of trial and error.
Remember that doctors might be experts on detoxing from mold, but you are the ultimate expert on your body.
Sending you love and hope!
Fore

 

[Gingergrrl]

Hi@Gingergrrl, Here's my reply to your question about what worked for me to treat mold poisoning.

Hi Fore,

Sorry I found this thread and then lost it. I don't think my old phone has the bookmarking feature so hopefully I do not lose it again!

I tried cholestyramine and phytosterols and they both worked well at removing mold toxins, but I couldn't handle the side effects, so I ended up taking soluble fiber of various types. I've been taking it for years now. It works for me.

What side effects did you have from CSM and how much did you take? What fibers did you take? I think you mentioned some kind of fruit pectin once and I am very limited in what fruits I can take due to MCAS.

There's a huge overlap of things that help ME/CFS and help mold poisoning. I take anti-inflammatories like Advil to sleep at night, antioxidants like grapeseed extract, resveratrol, milk thistle, and every mineral I can get my hands on. Molybdenum, magnesium, manganese, and potassium have been especially helpful, because they have helped me detox. Calcium helps me sleep

I take magnesium and potassium every day but do not take any of the others.

I like Flor Essence detox tea a lot because it's very gentle. I am super sensitive to most things that detox a person.

I forgot if I already asked you but do you have MCAS too? I have to avoid most fillers, and all dyes etc and very limited in what I can ingest but hoping this improves with time.

Garden of Life Raw B complex has been helpful. It's what I take to help with methylation. I also take Egg Yolk Lecithin, and a balance of EFAs in the form of fish oil and evening primrose oil.

My body wasn't able to handle the methylation stuff (over a year ago when I was sick but not nearly as now) and cannot eat eggs b/c of histamine and never tolerated fish oil. In general I don't tolerate most food or meds that could help me which is a bummer for me.

I drink over a gallon of water and other liquids a day, to keep stuff moving through the kidneys, and lots of vitamin C to keep things moving through the bowels. (Sorry to be graphic, but Rich VanK mentioned during the early days of the methylation protocol that we should be pooing at least three times a day when detoxing, and I try to keep that happening.)

No worries about TMI here LOL. I have some GI issues from one of my meds but hope soon to be off of it. I do take Vit C every day (it's part of one of the three types of Quercetin that I take) and try to drink water.

There are SO many things you could take to help detox mold toxins. I'm sure I'm forgetting some of them. Different things seem to work best for different people. Maybe other people will have suggestions, too.

Did you ever use activated charcoal, Chlorella, bentonite or zeolite Clay? I have not used anything yet but just curious as these are things my dr uses with some patients plus CSM.

Also, did you ever try nebulized glutathione? Or other forms of glutathione?

And of course, mold avoidance played a big part in helping me detox and feel stronger and more energetic.

We are working on this part and still trying to find a mold free place to live.

I hope you find the treatments that work the best on your particular body. It takes a lot of trial and error. Remember that doctors might be experts on detoxing from mold, but you are the ultimate expert on your body. Sending you love and hope! Fore

Thanks and to you, too. How long would you say this whole process takes (once you get to mold free enviro and start the binders I mean.)

Thanks again!

 

[Forebearance]

Hi @Gingergrrl,

CSM and phtyosterols were basically too strong for me, even in tiny amounts. That's not true for most people. For me, they sucked up so many minerals that my teeth began to feel weak. I didn't want to risk losing a tooth because of binders.

My favorite soluble fiber is Benefiber. I also take CitriCel sometimes.
I've been taking Chlorella for a few years, because it helps prevent numbness in my hands at night. Someone said that it detoxes mercury, so maybe that is why. I have many silver fillings still.

I tried one activated charcoal capsule once and didn't like it. I can't remember why. I haven't tried taking clay internally. I've tried soaking my feet in it, but the clay products I tried stung my skin and I wondered if they had been exposed to mold toxins.

I've tried glutathione in pill form, a couple different brands. It didn't feel good to me. My liver is probably too touchy to tolerate it. I haven't tried nebulized glutathione. But I know plenty of people who have been helped a lot by nebulized glutathione. I don't have MCAS, but I am really sensitive to lots of things. So you will probably have to experiment on yourself to see what works for you.

I don't know how long it might take you to detox. Some people get much better in a few years. I think it varies according to your liver, kidneys, genetics, etc. But I think it would be safe to say that for most of us with ME/CFS it is a long process. We seem to have a lot of toxins stored inside us.

Really the Brewer protocol and my salt inhaler have probably been the best treatments I've found so far. People seem to be loving their FIR saunas. I do love a good soak in a hot spring. Or a hot tub. But you have to change the water each time you use the hot tub, because you'll leave a bunch of toxins behind in the water.

Driving up to the top of a hill or mountain and breathing really pristine outdoor air helps a lot too.

I hope that helps. Your experience of detoxing could be really different from mine. You won't know until you try things. I hope you will find things that really help you.
Fore

 

[Gingergrrl]

@Forebearance

CSM and phtyosterols were basically too strong for me, even in tiny amounts. That's not true for most people. For me, they sucked up so many minerals that my teeth began to feel weak. I didn't want to risk losing a tooth because of binders.

Is it common that someone could lose a tooth from CSM? Also can you remind me what phytostrols you tried?

My favorite soluble fiber is Benefiber. I also take CitriCel sometimes.
I've been taking Chlorella for a few years, because it helps remove the nerve pain in my extremities. Someone said that it detoxes mercury, so maybe that is why. I have many silver fillings still.

Do those kinds of fibers act as mold binders? I know my mold doc uses Chlorella for some people but I have never had a mercury filling and my recent issue is from a proven severe mold exposure for two yrs.

I tried one activated charcoal capsule once and didn't like it. I can't remember why. I haven't tried taking clay internally. I've tried soaking my feet in it, but the clay products I tried stung my skin and I wondered if they had been exposed to mold toxins.

Bummer and I wish you remembered why you didn't like the charcoal! This is the first binder that I will be trying. As far as the clay, my mold doc said it has to be from a really pure source and not sure if I will ever be trying that one. I have a phone consult with her tomorrow and hoping to figure out a plan. She was supposed to speak with my MCAS doc today but unclear if this really occurred.

I've tried glutathione in pill form, a couple different brands. It didn't feel good to me. My liver is probably too touchy to tolerate it. I haven't tried nebulized glutathione. But I know plenty of people who have been helped a lot by nebulized glutathione. I don't have MCAS, but I am really sensitive to lots of things. So you will probably have to experiment on yourself to see what works for you.

Do you know anyone in which nebulized glutathione helped with shortness of breath and on the flip side, do you know anyone in which it caused bronchospasm?

I don't know how long it might take you to detox. Some people get much better in a few years. I think it varies according to your liver, kidneys, genetics, etc. But I think it would be safe to say that for most of us with ME/CFS it is a long process. We seem to have a lot of toxins stored inside us.

Thanks and I no longer believe there is a quick fix and not expecting a miracle. I've had multiple toxic exposures starting with a toxic bldg at work, at home, viral, and to an antibiotic to name a few!

Really the Brewer protocol and my salt inhaler have probably been the best treatments I've found so far. People seem to be loving their FIR saunas. I do love a good soak in a hot spring. Or a hot tub. But you have to change the water each time you use the hot tub, because you'll leave a bunch of toxins behind in the water.

What is a salt inhaler?!!! I do not have sauna or hot tub but afraid it could cause me tachycardia.

Driving up to the top of a hill or mountain and breathing really pristine outdoor air helps a lot too.

Definitely no pristine air where I live LOL.

I hope that helps. Your experience of detoxing could be really different from mine. You won't know until you try things. I hope you will find things that really help you. Fore

Thanks and it does help!

 

[Forebearance]

Hi @Gingergrrl,

I think it's pretty rare for people to lose a tooth from CSM. But I could be one of those rare people who might.
I can't remember the kind of phytosterols I used. I went to the Lowering Cholesterol section of the health food store and picked one to try.

Soluble fiber acts like a super gentle toxin binder. It works a lot more slowly than the stronger binders. But hey, it's better than nothing.

I'm sorry to say that I don't know much about glutathione. Maybe someone who has used it will jump in and talk to you.

I got my salt inhaler from www.himalayansaltinhaler.com I'm using it to treat my sinuses along with the Nystatin. The good thing about salt inhalers is that they also help prevent colds and allergies, and they don't conflict with any meds or supplements. I'm always interested in trying things that are innocuous (unlikely to hurt me).

Yes, I can understand why you wouldn't want to try a hot tub.
Fore

 

[Gingergrrl]

Hi Fore,

I think it's pretty rare for people to lose a tooth from CSM. But I could be one of those rare people who might.
I can't remember the kind of phytosterols I used. I went to the Lowering Cholesterol section of the health food store and picked one to try.

Thanks and was just curious re: the CSM. I finally started a toothpick amount of charcoal about two hrs ago (and am still alive!) following the phone consult with my mold doc so will be slowly increasing the amount as my first binder.

Soluble fiber acts like a super gentle toxin binder. It works a lot more slowly than the stronger binders. But hey, it's better than nothing.

Hey, whatever works, works!

Can I ask you (and apologize if I already did ) what your mold exposure was and your symptoms? Or can you direct me to your initial thread where you spoke about it?

I'm sorry to say that I don't know much about glutathione. Maybe someone who has used it will jump in and talk to you.

No worries and spoke in detail to my mold doc about it and think we have a plan (in a few weeks after I am on the charcoal.)

I got my salt inhaler from www.himalayansaltinhaler.com I'm using it to treat my sinuses along with the Nystatin. The good thing about salt inhalers is that they also help prevent colds and allergies, and they don't conflict with any meds or supplements. I'm always interested in trying things that are innocuous (unlikely to hurt me).

I did a lot of research on this yesterday and even found the Dr. Oz segment where he is promoting it. It looks pretty benign and something to consider.

Yes, I can understand why you wouldn't want to try a hot tub.

Not at this point but you never know in the future! Thanks again for all your help.

 

[Forebearance]

Hi Gingergrrl,

I think my mold exposure symptoms were having ME/CFS, basically. I got sick while living in a basement apartment in a building that I found out later had a toxic mold problem. I came down with mono and never got better, even though I moved out of that place. I was getting gradually better until my apartment flooded three times. Plus the refrigerator leaked. Mold grew in the carpet. Then I started getting worse again. One new symptom at that point was that my skin began to feel like it was burning.

It wasn't until after I moved out and started mold avoidance that I developed all the warning symptoms of being around mold toxins. For example, pounding heart, internal organ pain, dizziness, stinging skin, etc. Those warning symptoms vary by person. For some people a main warning symptom is a feeling of doom.

Good luck with your charcoal experiment!
Fore

 

[fromstrawtomore]

Mycometrics (the lab Shoemaker recommends) costs $275 for ERMI (36 mold species) and $125 for HERTSMI (5 mold species), if you supply your own swiffer cloth.

 

[Forebearance]

Welcome, fromstrawtomore.
Is your name suggesting that you are spinning straw into gold?

 

[Gingergrrl]

Hi Gingergrrl,

I think my mold exposure symptoms were having ME/CFS, basically. I got sick while living in a basement apartment in a building that I found out later had a toxic mold problem. I came down with mono and never got better, even though I moved out of that place. I was getting gradually better until my apartment flooded three times. Plus the refrigerator leaked. Mold grew in the carpet. Then I started getting worse again. One new symptom at that point was that my skin began to feel like it was burning.

It wasn't until after I moved out and started mold avoidance that I developed all the warning symptoms of being around mold toxins. For example, pounding heart, internal organ pain, dizziness, stinging skin, etc. Those warning symptoms vary by person. For some people a main warning symptom is a feeling of doom.

Good luck with your charcoal experiment!
Fore

Thanks Fore and so far my charcoal experience has not been good so I am going to try a different brand before giving up on it.

When you said (in another post) that you didn't remember why you disliked the charcoal, if you think back did it give you heartburn, tachycardia or itchy skin? No worries if you don't remember.

Am trying to gather data and find at least one mold binder that I can tolerate. My next to try after charcoal are CSM and glutathione.

 

[Sea]

I had no idea building mould was spelled with a "u."

That seems to be an odd explanation for a different spelling. In Australia we always spell mould with the u, I think it's more likely to be just one of those international spelling differences.

 

[Forebearance]

Thanks Fore and so far my charcoal experience has not been good so I am going to try a different brand before giving up on it.

When you said (in another post) that you didn't remember why you disliked the charcoal, if you think back did it give you heartburn, tachycardia or itchy skin? No worries if you don't remember.

Am trying to gather data and find at least one mold binder that I can tolerate. My next to try after charcoal are CSM and glutathione.

I'm sorry I can't remember why I disliked the charcoal, Gingergrrl. It was many years ago that I tried it.