Detection of Mycotoxins in Patients with CFS

[Gingergrrl]

@Forebearance @Ifish or any of the mold gurus in this thread- Is there a guidebook to interpret the HLA mold gene testing from Lab Corp? I have been really ill and apologize if it is stated in this thread and hoping someone can point me in the right direction! Don't have RTL tests back yet but do have mold gene test but clueless how to interpret it. Thank you in advance and apologize if I am slow to respond.

 

[Gingergrrl]

It is a bit confusing. When I tried to post it originally the Phoenix Rising program kept bunching the numbers together. In order to space them out, I had to put dashes in between. It might make the most sense if you work each category from top to bottom.

Take Ochratoxin A for example. If you work from the top down you will see that a positive test result is 2.0 ppb (parts per billion). The average for the three tests I did in 2012 - 2013 was 3.29 ppb. My result from my March 27, 2015 test was 1.11 ppb.

Thank you and I will wait until I have my actual results back and then may ask you a few questions. Am hoping they are more straightforward to read than the mold gene test!

 

[Valentijn]

@Gingergrrl - What's the results say? Are there some letters in the results section, and some numbers further down like 01:01 or 04:05, etc?

 

[Forebearance]

@Forebearance @Ifish or any of the mold gurus in this thread- Is there a guidebook to interpret the HLA mold gene testing from Lab Corp? I have been really ill and apologize if it is stated in this thread and hoping someone can point me in the right direction! Don't have RTL tests back yet but do have mold gene test but clueless how to interpret it. Thank you in advance and apologize if I am slow to respond.

I'll go answer you in the biotoxins section, where people discuss stuff like this!

 

[Little Bluestem]

Brewer now believes antibiotic resistant staph infections may be a cofactor in many patients.
[SNIP]
Brewer is not doing any testing as he feels there really isn't a practical way to do it. He believes, for now, that appropriate candidates are individuals that are not getting better on the mold protocol or patients with chronic sinusitis.
The treatment period is one month. My 18 year old daughter and I plan to go forward with this.

I am seriously considering doing this treatment. Since I have had a sinus infection for decades, should I start with staph treatment?

 

[Soundthealarm21]

I am seriously considering doing this treatment. Since I have had a sinus infection for decades, should I start with staph treatment?

You need to start by testing your home for mycotoxins first.

 

[Thinktank]

You need to start by testing your home for mycotoxins first.

Any recommendation which tests to do?

 

[Little Bluestem]

You need to start by testing your home for mycotoxins first.

I really can't afford that. I also rent, so assume I would need the landlady's permission.

I know that one previous apartment had mold, I could smell it. I assume that another did because it was a 'garden level' - half above ground and half below.

 

[Soundthealarm21]

I really can't afford that. I also rent, so assume I would need the landlady's permission.

I know that one previous apartment had mold, I could smell it. I assume that another did because it was a 'garden level' - half above ground and half below.

I hate to be the bearer of bad news, but starting a treatment on removing mycotoxins from your body will do no good if you're still in a home that is producing mycotoxins. You'll just be breathing in what you're trying to kill.

 

[Soundthealarm21]

Any recommendation which tests to do?

We use an air sample test from a licensed guy. He sends it off to a lab and we get the results.

 

[psz]

An interesting documentary about mold illness: https://moldymovie.com

Doesn't focus on any specific treatment but it's a good introduction for people not familiar with mold.

 

[switters]

Here's a little update FWIW. Despite continued misgivings about the RTL test, and the journals that the Hooper and Brewer studies have been published in (see this write-up for more on that), I'm going to start the Nystatin nasal treatment in a few days.

Previously I did the ampho-B treatment for about 3 weeks, and I still have not fully recovered from the nightmare reaction I had to it. I developed a sinus infection and completely lost my sense of smell (for the first time in my life), and since then my sleep, digestion, and general health have been significantly worse. I realized afterwards that I was administering the medication incorrectly (was taking the chelating agent and ampho-B at the same time), and I was also doing it twice a day since that was what was advised on the bottle. I am still not sure whether it was a "local irritation" (i.e. a reaction to the medication) or a "die-off" response.

I plan to be much more conservative with Nystatin. I will start once every three days, as lFish and others have. I have also purchased a far infrared sauna for my home, and will use that regularly as well to help with detox. I'll report back here periodically.

 

[Forebearance]

Good luck with this, @switters!
I was able to feel how long the detoxing lasted after taking a dose of Nystatin.
So I based my dosing schedule on when it felt like I was done detoxing. When the effects of a dose of Nystatin subsided, then I took another. I hope you can feel something similar going on in you.

 

[clive powney]

I have been following this thread for quite some time and am interested in the results and discussions. For a long while I have had the suspicion that my environment might well be playing a major role in my illness.
I was wondering if anyone in the UK has managed to start this protocol and if so what are the ways and means of obtaining the tests and the necessary medication and support????
Thanks in advance
Clive

 

[psz]

I have been following this thread for quite some time and am interested in the results and discussions. For a long while I have had the suspicion that my environment might well be playing a major role in my illness.
I was wondering if anyone in the UK has managed to start this protocol and if so what are the ways and means of obtaining the tests and the necessary medication and support????
Thanks in advance
Clive

You won't have it easy in the UK. There are almost no doctors familiar with any of this. Your best bet are functional medicine doctors, this will be private and not covered by any major insurance.

I managed to get it all done in the UK but it was by getting all the necessary ingredients myself from several different sources.

 

[clive powney]

You won't have it easy in the UK. There are almost no doctors familiar with any of this. Your best bet are functional medicine doctors, this will be private and not covered by any major insurance.

I managed to get it all done in the UK but it was by getting all the necessary ingredients myself from several different sources.

Thanks PSZ. Any chance of giving me an indication please of how you got this done? Please PM me if you feel it is not for forum (or non forum users) eyes.

 

[Skiii]

FYI, my insurance (CVS Caremark) had refused to cover my compounded cholestyramine with stevia starting the first of the year. Even before that, I was paying $90 for the copay plus shipping from Hopkinton and then a local compounding pharmacy. I was able to buy the remainder from the local compounding pharmacy, but after that is when I looked into Woodland Hills that buys it in bulk. Well, I finally called them last week, and they ran my insurance it and it covered it 100%! No copay, and they literally even covered shipping. It must be under the threshold limit of what they'd pay or something, I didn't inquire.

Just an FYI, I know we could all stand to save some money in this!

 

[JCamp]

That's good info, @Skiii. Thanks.

If anyone finds an alternative source for the compounded nasal nystatin from ASL, please let me know. It is not covered by my insurance (nor is the RTL mycotoxin assay).

 

[Little Bluestem]

I am going to talk to my doctor about doing this. If she agrees, do I have her FAX the prescriptions to the pharmacy, then have the pharmacy ship the meds to me?

 

[Ifish]

I am going to talk to my doctor about doing this. If she agrees, do I have her FAX the prescriptions to the pharmacy, then have the pharmacy ship the meds to me?

Yes, this is generally how it is done.