Detection of Mycotoxins in Patients with CFS

[Forebearance]

Thank you, Ifish!

 

[switters]

I'm on board with 1 & 3. #2 is more challenging for me given my skepticism about the tests and the entire theory, but if I am seeing noticeable progress (even if very slow) committing for 1.5-2 years is nothing. I've been sick for a lot longer than that.

#4 is an issue right now.I recently cleared out a room in our house off of the carport, and put my new Sunlighten sauna in there. Then I did an ERMI test in that room and it came back at 19, which is extremely high. The HERTSMI-2 was 30, which is basically "run away" for anyone with mold issues. This was a big surprise because I've done two ERMIs/HERTSMI-2s in my house, and they were both below the safe level.

So now it looks like I will have to get the carport room inspected and then remediated, but I'm having a hard time finding a reliable person to do this.

Re: nystatin. I still have a full 30-day supply of Nystatin from ASL. I have the chelating agent as well, but I think it might be close to expiring. I wonder if it's worth starting with the Nystatin only, and hoping that Brewer finds another pharmacy in the meantime?

 

[jason30]

I wonder if someone knows where i can test for mycotoxins in Europe?
I lived above molds/fungus for 4 years, they lived in the crawling space and I didn't knew. I am sure there are some mycotoxins in my body but I would like to know how much.

 

[Skiii]

About a month or two ago I called to get my prescriptions refilled and ASL forwarded me to this company, who was now in charge of refilling my prescriptions. I got nystatin and steroids from them, and they asked if I needed a new nasotouch. they have them. I didn't realize it was because ASL going out of business, or why ASL didn't tell everyone about this company. Anyway, they already had my scripts from ASL, so maybe they have yours too- try it!
http://www.tagaseptic.com/

 

[Skiii]

I honestly do not doubt the theory. My history matches it completely, and it makes real, common, sense to me. From those that know him on here, they say Brewer seems like a doctor trying to help his patients. Both of my doctors, whom I trust and respect, know Brewer- they sit and have breakfast with him at these conferences. Dr Nathan and Gordon Med doctors as well, some of the leading functional med/lyme doctors are using Brewer's theory, too.

As for it being in the home or the food I eat, I discount that too. Otherwise my family would be sick as well, but they aren't. I worked in a very moldy environment for a year. I went through sinus hell for that year, and even surgery. My pain started then. My pain continued and got slowly worse over the last 10 years, and I just didn't connect the two, especially because I left after that one year. When I started on the CSM and charcoal first for a couple months, my symptoms got much better. As I do this protocol, my symptoms get worse (for now). Both of which are confirmation to me.

For those with a less obvious history, I can see being skeptical of trying a long process. But my husband and I really believe this is the right diagnosis for me. Just my thoughts.

 

[Skiii]

Also, Woodland Hills Pharmacy puts the CSM resin in capsules now, I just got some yesterday- it is SO much easier than mixing the powder with water/juice!

 

[Skiii]

General grumble, but I hate that I don't get notifications about new posts on here.

 

[jason30]

Interesting Skiii, I am considering to start with CSM and charcoal. How much did you take on a day and did you took it with any food or?

 

[JCamp]

Hi all... Can anyone here remind me of why Dr Brewer says the mold is in the sinuses even without sinus symptoms? Mold was definitely my last straw in developing severe CFS but I haven't ever had the chronic sinusitis that so many here do. However, lately, I've developed some daily stuffiness and even a deep cough -- especially in the mornings and evenings, and it's worse following baths and sauna. My tolerance for sauna has also decreased.

The nasal and respiratory symptoms aren't seasonal allergies so I'm wondering if it can develop as a die off symptom or a chronic reaction to nystatin.

Any thoughts?

 

[Ifish]

Hi all... Can anyone here remind me of why Dr Brewer says the mold is in the sinuses even without sinus symptoms? Mold was definitely my last straw in developing severe CFS but I haven't ever had the chronic sinusitis that so many here do. However, lately, I've developed some daily stuffiness and even a deep cough -- especially in the mornings and evenings, and it's worse following baths and sauna. My tolerance for sauna has also decreased.

The nasal and respiratory symptoms aren't seasonal allergies so I'm wondering if it can develop as a die off symptom or a chronic reaction to nystatin.

Any thoughts?

Brewer has stated that a very large number of his patients have tested positive for mycotoxins despite not having sinus symptoms. Most of these patients have improved with nasal antifungal treatment. My oldest daughter was positive for mycotoxins and has improved with treatment. The other three in our family have sinus symptoms. I don't recall him giving an opinion as to why some have sinus symptoms and some don't.

 

[JCamp]

Brewer has stated that a very large number of his patients have tested positive for mycotoxins despite not having sinus symptoms. Most of these patients have improved with nasal antifungal treatment. My oldest daughter was positive for mycotoxins and has improved with treatment. The other three in our family have sinus symptoms. I don't recall him giving an opinion as to why some have sinus symptoms and some don't.

Thanks, @Ifish. I've heard Brewer report about his other sinus symptom free patients too, but just haven't heard the theory behind it. I'm wondering if it has something to do with a protective biofilm over the mold such that the immune system basically stops recognizing it as invasive and stops trying to fight it. Then, as the mold stars to be eradicated, the immune system activates again and sinus symptoms start. It's just baffling to me that I would develop mild sinus and bronchial irritation now...it's definitely not a new virus, though I suppose it could be related to the increasing detox I'm seeing with the baths and saunas. Though this doesn't seem to support my lower mycotoxin levels. It's all very confusing.

You mentioned having a period where saunas were tough for you to tolerate. Could you elaborate more on this? I am experiencing it now and having to back off to every few days for just 20 minutes. Also, you mentioned having a hacking cough during your treatment. Do you think this was unrelated or possibly a die off symptom.

Thanks so much for you feedback! Hope we get another nystatin supplier soon. I like the citri drops idea...there are also some colloidal silver nasal sprays that could help.

 

[Skiii]

@JCamp did you try TAG pharmacy that I listed? They seemed to already have my ASL scripts.

 

[JCamp]

@JCamp did you try TAG pharmacy that I listed? They seemed to already have my ASL scripts.

Thanks, @Skiii. I have contacted Dr Brewer's office and am waiting for them to give the ok on a new compounding pharmacy. Since my insurance doesn't cover the compounded nystatin it's not in my best interest to shell out the money until I know TAG is reliable. I'm glad ASL sent their scrips over but ASL has lost my trust as a reputable company by the way they've handled this whole thing. I also spoke to a rep at ASL a few weeks ago and they mentioned nothing about the closing or TAG. Nor did they give Brewer a heads up when they are fully aware he has several hundred patients on the protocol.

Keep us posted if you receive the TAG product and find it is satisfactory.

 

[Skiii]

I did get them in. I haven't tried the Nystatin yet as I'm finishing up another bottle but the betamethasone is fine, they look fine.

Agreed, the whole thing with ASL is really strange.

 

[switters]

Has anyone considered using nasal probiotics? This website has info about people that have put kim chi juice up their nose and significantly improved their sinusitis. Sounds wacky, but there is actually research to support the concept. Susan Lynch at UCSF discovered that people with chronic sinusitis have similar rates of staph colonization to controls, but much lower microbial diversity in their sinuses. In particular, they are lacking in a bacterium called Lactobacillus sakei, which is found in.... kim chi, among other things.

Elsewhere I've seen reports of people crushing up BLIS-K12 tablets and sniffing them and curing their nasal staph infections, even where bactroban and other antibiotics failed. Again, this sounds wacky, but if you consider the sinus microbiome in a similar way to the gut microbiome, it makes sense.

Susan Lynch said in an interview that we've been approaching this all wrong... it may not be so much about eradicating pathogens, but more about restoring microbial balance. I can't help wondering if this applies, at least in some way, to the fungal mold treatment. i.e. Is it possible that adding nasal probiotics could significantly improve the efficacy of the antifungal nasal treatment? I think there's reason to believe it would.

 

[switters]

I did get them in. I haven't tried the Nystatin yet as I'm finishing up another bottle but the betamethasone is fine, they look fine.

Agreed, the whole thing with ASL is really strange.

Does TAG also have the chelating agent? I have a bottle of unused Nystatin powder, but the chelating agent I had expired.

Good do know about the capsule option for CSM. I've been taking the cellulose powder from Woodland.

 

[Skiii]

What are you all using for probiotics? As I'm sitting here in a haze of fatigue because I seem to be detoxing this stuff so slowly, I realized I haven't been good about taking my probiotics, and they might help me eliminate this stuff a little better. Brand, amount, how often?
Has anyone noticed less die-off effects when they consistently take probiotics?

 

[Christopher]

What are you all using for probiotics? As I'm sitting here in a haze of fatigue because I seem to be detoxing this stuff so slowly, I realized I haven't been good about taking my probiotics, and they might help me eliminate this stuff a little better. Brand, amount, how often?
Has anyone noticed less die-off effects when they consistently take probiotics?

Do you like fermented foods? Kefir, sauerkraut (nonpasteurized)

 

[Skiii]

No, actually- I don't even like yogurt! Kombucha is good though, I have to remember to buy some. I also might buy and choke down some of the 'real' sauerkraut from the health food store, too...

 

[Christopher]

No, actually- I don't even like yogurt! Kombucha is good though, I have to remember to buy some. I also might buy and choke down some of the 'real' sauerkraut from the health food store, too...

I tried some of the Whole Foods raw sauerkraut a bit ago, and felt it was doing something good (I felt looser and not as stuck, if you know what I mean). I think they're better than packaged probiotics.