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Detection of Mycotoxins in Patients with CFS

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Valentijn

Senior Member
Messages
15,786
kyzcreig said:
Would there be a cheaper way to detect if you have ochratoxin a? Otherwise I'll give that test a shot.
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I don't see it on their website, but just yesterday I happened to see an order form for the same test from the same lab. It has 4 options, including the $700 panel. But the three components of that test, including Ochratoxin A, are available for $250 each. The Ochratoxin A test ID is E8501.
 
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Ifish

Senior Member
Messages
182
jop said:
Hi @Ifish do you know if J Brewer would be prepared to make the formulation for the nystatin and edta mixtures available to a pharmaceutical compounding company in New Zealand? There is quite a forward thinking compounding company here, who do one off treatments. My GP is friends with one of their pharmacists so that all seems promising. The ampho b option would be much harder for me to get a doctor on side with than nystatin and seems to give similar results despite the difference in vitro?

I'm also trying to get hold of the flaem rhino clear mobile that @psz has said is the same as the nasatouch. It looks the same.

Thanks.
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I doubt Brewer would involve himself with this, but I can't give you a definitive answer. Perhaps the best approach is to have the New Zealand Pharmacy or the GP contact Imprimis directly: http://imprimispharma.com/our-business/sinus/
 
Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
jop said:
@Forebearance my sinuses have also given me quite a bit of pain and respond to Zinc treatment, however in my case the Zinc at first seemed to cause a flare up and I had to reduce the dose for a while till it settled. I had a zinc deficiency by medical standards at the time though.

I am using lactobacilus sakei as a probiotic in an ongoing way and my sinus pain has largely gone. This follows from the work of Susan Lynch which is discussed on the lactobacto website, except I use it in the sinus rinse bottle. It's available as a bioprotective culture for meat from the Christian Hansen safepro range, simply called B-2. I have an ongoing and obvious staph issue in my nose following pituitary surgery. This localised infection was visibly improved within a week of using L. Sakei. Long term lower dose use also correlates with improved face pain and overall health, but has been gradual over months and I've been giving my system lots of other gently tweaks at the same time.

I'm assuming you know about the work on MARCONs and face pain?
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Thank you, @jop . I appreciate the suggestion. I'm familiar with MARCONS, but I didn't remember that it caused face pain. It makes sense that it would. I'm so glad you've found something that is good for you!

Now I'm also needing a ton of magnesium. Maybe it's to balance out the zinc. Minerals have been crucial for me in order to detox.
 
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Ifish

Senior Member
Messages
182
S

stolpioni

Messages
39
Just found this thread! I believe mold might be the reason for my CFS. They recently teared down my old school which I attended from 6 - 16 years old (I am 25 now), because of severe mold infection. So maybe there is a link here.

Could anybody be so kind to tell me what steps I should take now?

1. What tests should I take?
2. What protocol in terms of medication/supplements should I do?

Thanks guys!
 
Soundthealarm21

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
stolpioni said:
Just found this thread! I believe mold might be the reason for my CFS. They recently teared down my old school which I attended from 6 - 16 years old (I am 25 now), because of severe mold infection. So maybe there is a link here.

Could anybody be so kind to tell me what steps I should take now?

1. What tests should I take?
2. What protocol in terms of medication/supplements should I do?

Thanks guys!
Click to expand...

I'd say the first thing you should do is get your living space checked for mold even if there is no obvious sign of water damage or anything. If there is a presence of mycotoxin producing mold then it needs to be re mediated or you need to leave and go somewhere clean.
 
Paintmyturquoise

Paintmyturquoise

Messages
32
Hip said:
Hold on, something seems not quite right about this study on mycotoxins in CFS: the authors claim that: "Exposure histories indicated current and/or past exposure to water-damaged buildings in over 90% of cases".

Now I don't dispute that mycotoxins may precipitate CFS, but is it really the case that 90% of CFS patients have been exposed to water-damaged buildings?

Can we have a quick survey of the people here: who has been exposed to a water damage-building? Usually the moldy smell is all too apparent when there is a mold infestation. I for one have not been exposed to any water damage-buildings or mold infestations, as far as I am aware.
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Very bad when I crashed. I can't smell mold like my Partner can and apparently that's common amongst people affected
 
I

Ifish

Senior Member
Messages
182
Skiii said:
Any personal updates? @Ifish, @Forebearance, etc? Ay updates from Brewer or colleagues?
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Skii,
I saw Brewer a few months ago. RealTime Labs is now testing for gliotoxin. Brewer is finding that his patients are consistently positive for gliotoxin even if they have lowered their other mycotoxin levels. I believe the positive rate is something around 95%.

Brewer believes the culprit is aspergillis which does not require as much moisture as some of the other molds. He thinks patients have aspergillis in the sinuses that is not responding to nasal antifungals and maybe the lungs. He is trying several approaches and is monitoring to see what might bring the levels down:
1. Oral antifungals in addition to the nasal antifungals.
2. Oral NAC which would theoretically neutralize gliotoxin
3. NAC sinus spray
4. R lipoic acid to increase glutithione

I repeated the mycotoxin panel (which now includes the gliotoxin test). I tested positive for gliotoxin at 1.53 PPB. Brewer's patient average is around 4 PPB. My trichothecene level is down to zero. I tested negative for ochratoxin but still had a detectable level. I was was slightly positive for aflatoxin, but I understand that RealTime has made some changes to the assay and Brewer wasn't certain that this is significant. (I had a prior test at 0)

I elected to go on oral itraconazole. I was on the NAC spray, but I've had two sinus infections since then and I've decided I might be getting inflammation from the spray and I've discontinued it. My wife is doing the NAC spray but not the oral antifunal. I will retest in a few months.

Brewer related the story of a woman who tested positive gliotoxin and got it down to zero in six weeks with a very dedicated regimen of daily sauna, exercise and nasal antifungals. She is now feeling well.

I am not completely well, but the sinus antifungal has changed my life. My quality of life is immensely better. In 25 years of illness trying everything under the sun this is the only thing that has helped me on a sustained basis.

I will see what happens with the additional treatment.

I think perhaps the second component of my illness is an over activated immune system. I am presently also persuing Low Dose Immunotherapy (LDI). It is too early to know if that will help.
 
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acer2000

Senior Member
Messages
818
Has anyone used EDTA only? Also how long does it take to get passed the worsening of symptoms. I am on EDTA nasal spray and I think it makes me more irritable, tired, and my vision is kind of wonky.
 
Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
@acer2000 , feeling irritable, tired, and having wonky vision all sound like they could possibly be symptoms of toxins being released inside the body.

To answer your request for updates, @Skiii , I am doing okay and I just recently figured something out. I haven't been doing the FIR saunas with the nasal Nystatin, because I haven't been able to tolerate FIR saunas in the past very well. But I figured out that the dark circles under my eyes, aching joints, and weight gain (even though I have been getting thinner) that have been happening to me might be due to a build-up of toxins internally.

If Dr. Brewer's protocol generates more toxins internally, then it requires extra help getting the toxins out. Which ifish has been saying all along. I just didn't know of any other way to help get them out.

But I found that an ionic foot bath does work on me, and I can tolerate it if I do it for 15 minutes at a time. Yay!

Also, I have tried a new alternative therapy that arrived in my town: a salt room. You sit in there for 45 minutes and breathe the salty air, and it is anti-microbial for the sinuses and lungs. I've found my Himalayan salt inhaler to be helpful, so I went and tried the room and it was nice.

I think it helped me feel better in a subtle way. It didn't have a dramatic effect, maybe because I've been using the salt inhaler for 2+ years. If I could afford it, I'd go there often. But it is a little expensive.
 
Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
Hi Little Bluestem,

It's a kind of footbath that has an electronic array sitting in it, that is attached to an electronic box. I don't know a lot about how they work. But I know that the goal of the footbath is to generate negative ions in the water, which get absorbed by the pores of your feet.

Then the negative ions travel throughout the body and neutralize any toxins they run into. It then makes the toxins easier to excrete.

While you're doing the footbath, the array rusts a lot and it looks very dramatic. It causes any impurities in the water you're using to settle out. But it's just a sideshow. The manufacturers say that one's body can influence the color of the water, but I don't worry about that too much.

The only thing I have noticed is that people who are having issues with their digestive systems say they find globs of fat in the water afterwards. Which is kind of EW. How is fat coming out of the pores of people's feet??

But anyway it seems harmless as long as one can afford the initial cost. They are around $250.
I had known about them for years and never wanted to spend the money to try them. But I recently read people with mold illness saying they were helpful, so I bit the bullet.

Fore
 
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