Detection of Mycotoxins in Patients with CFS

[Forebearance]

I am really struggling with the protocol and feeling discouraged.

Just to brainstorm, Skii, have you tried taking less than the 50,000 unit capsule of Nystatin? I open the capsule and use MUCH less than the whole capsule. I have really customized this treatment to suit my body.

Gaining weight might indicate that you have more toxins circulating than your body can excrete. I know my body is really efficient at storing those toxins in fat cells. One effect of this treatment on me has been getting thinner. But I am limited in how fast I can do the protocol by how fast my liver and kidneys can handle excreting the toxins that get released from killing critters. That's why I've had to do it so slowly.

 

[Forebearance]

That would be great for people like me who apparently read it but do not remember how to find it!

I can't cut and paste on this computer, but it's at the end of your thread called Questions re: mold testing, labs, treatment in the Biotoxins section of this forum.

 

[JCamp]

Following the trend and posting my update.

I've been doing the brewer protocol for 11 months. Six months Ampho b with enormous side effects. Five months now with nystatin. I've played with every other day and every day. It doesn't really seem to matter (I've never felt a strong die off reaction correlated with the medicine). In short, I've noticed no improvement in functioning. I am still bedridden and relying on caregivers. Most days it is a challenge to get to the toilet. Cognitively I am getting worse. It's hard to know if it's detox, adverse reaction, or something else. I see a new primary care doctor (functional/integrative) next month.

I did upgrade my sauna from the tent version to a sunlighten solo six weeks ago and I keep it right next to my bed. I know I'm detoxing more because the goo that comes out of my skin is grey, black, and thick. Same happens during an Epsom salt bath.

I did a retest last month and my mycotoxin numbers were lower. Hard to know if it's accurate since my symptoms are worse. Also, although I have never had chronic sinus symptoms, I've recently developed constant post nasal drip and a kind of hollow feeling deep in the sinuses with even a bit of a popping sensation now and then. I can only hope this is a good sign and not a sign that I'm reacting to the nystatin.

For now, Dr Brewer tells me to continue on....

 

[foxy loxy]

Ok, my Lyme dr. just said today that Dr. Brewer has a share in Real Time Labs. I am worried he is merely padding his pockets...It doesn't help I don't know him at all... My Lyme Dr. hasn't written it all off but is very wary of Real Time Labs.

My Lyme Dr. said though some of his patients think it helps them, some have been on it for years and does nothing.

Can anyone vouch for this info about Brewer? BTW, I am not giving up on it yet! I came this far...

 

[Sushi]

Could you post a link here when you have a chance, @Forebearance , because I think many of us might be interested to read it.
Again and again

That would be great for people like me who apparently read it but do not remember how to find it!

I think this is what you are looking for.

 

[soulfeast]

ASL/TAG has gone out of business. They have left a notice on their phone answering system. No direction other than to contact your doctor for alternative pharmacy. I have 3 boxes of product here and another malfunctioning machine (battery most likely, again), so no way to finish this product!

Any direction appreciated. Another pharmacy using this atomizer? It seems like this is an ASL/TAG product so wondering if there will be a way to replace this machine and finish this off..

http://nasoneb.com/index.php?page=nebulizer Nasoneb???

http://www.amazon.com/gp/product/B00JA6N3PE/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=A1R8FY74L4M42U this may get into lungs..

@Ifish has Brewer commented on this problem yet?

 

[psz]

Another pharmacy using this atomizer? It seems like this is an ASL/TAG product so wondering if there will be a way to replace this machine and finish this off..

It's a product called Flaem Rhino Clear Mobile, seems ASL just rebranded it to NasaTouch. Google Flaem and you should be able to get it off ebay etc.

http://www.flaem.it/en/flaem/2/aerosol_therapy/32/rhino_clear_mobile

 

[Ifish]

ASL/TAG has gone out of business. They have left a notice on their phone answering system. No direction other than to contact your doctor for alternative pharmacy. I have 3 boxes of product here and another malfunctioning machine (battery most likely, again), so no way to finish this product!

Any direction appreciated. Another pharmacy using this atomizer? It seems like this is an ASL/TAG product so wondering if there will be a way to replace this machine and finish this off..

http://nasoneb.com/index.php?page=nebulizer Nasoneb???

http://www.amazon.com/gp/product/B00JA6N3PE/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=A1R8FY74L4M42U this may get into lungs..

@Ifish has Brewer commented on this problem yet?

Brewer's office found out Monday. They were given no advance warning. They are now in the process of finding another compounding pharmacy to make the medications. I am told this will take a month at least.

We have four family members on the protocol. The frustrating part is that with some advance warning we could have purchased a maximum supply. Now we will have to ration what we have and hope there is a new supplier within a month or so.

 

[JCamp]

Brewer's office found out Monday. They were given no advance warning. They are now in the process of finding another compounding pharmacy to make the medications. I am told this will take a month at least.

We have four family members on the protocol. The frustrating part is that with some advance warning we could have purchased a maximum supply. Now we will have to ration what we have and hope there is a new supplier within a month or so.

I'm so glad this was posted here. What's strange is I've been communicating with dr brewer this week and he mentioned nothing about this. I have about ten days left of nystatin. @Ifish will you let us know if you hear of the new plan?

Any guess to what is the minimum dose for rationing at this point? Every three days? Halving pills every other day?

 

[Forebearance]

I'm so sorry to hear that the protocol isn't doing anything for you but making your hair fall out, @Roxanne Martin . That sounds really discouraging. How long do you think you'll keep trying it? So far every single ME/CFS treatment I've heard of works for some of us, but not all of us.

That is terrible about ASL/TAG going out of business with no warning!
It is pure luck that I have enough to last me until September. Whew.

 

[soulfeast]

Brewer's office found out Monday. They were given no advance warning. They are now in the process of finding another compounding pharmacy to make the medications. I am told this will take a month at least.

We have four family members on the protocol. The frustrating part is that with some advance warning we could have purchased a maximum supply. Now we will have to ration what we have and hope there is a new supplier within a month or so.

Nasoneb is probably the only alternative.

http://www.nasoneb.com/index.php?page=purchase

 

[Sushi]

I just dropped into this thread. Is getting powdered nystatin the problem or the machine? I have another source of nystatin if that is the problem.

 

[foxy loxy]

I don't know if its actually doing nothing, @Forebearance. I will say that this year I started is the year it does feel like my health is sloooooowly coming 'round. I don't know what to attribute it all to, as I am switching meds around right and left as well. I plan on giving it to the end of the year... retesting/seeing how I feel, and go from there I guess! I am a stubborn one!!

I happen to have enough nasal meds for a few months too. I just ordered...(whew) Why did they quit so suddenly? That seems odd...

 

[Little Bluestem]

For those using Nystatin, any pharmacy can get you Nystatin powder and you can mix it yourself. Be sure to get compounding powder, not topical powder.

 

[switters]

Just checked back on this thread. It seems that Ifish and is family are the only ones here that have experienced noticeable/significant improvement on the protocol. Is that correct?

I purchases a Sunlighten sauna and have been using it every other day for 40 minutes each time. I don't notice any difference at all. I ordered the Nystatin from ASL about a month ago but have been hesitant to start again because 1) I had such a terrible and long-lasting reaction to ampho-B, and 2) I am still skeptical of this protocol overall.

I'm just having a hard time getting over what I learned about Hooper, the lack of peer-reviewed evidence supporting the RTL test (I don't count the Toxins journal Brewer's paper was published in as true peer-review after reading this article), and the considerable amount of research indicating that mycotoxins present in food will appear in the urine (summarized here and here on Shoemaker's site).

I am still considering the protocol, simply because nothing else I've done (including Shoemaker's protocol) has worked. But I can't say the experiences of most people in this thread with it—aside from Ifish & his family's—are particularly inspiring.

 

[Little Bluestem]

The idea that people with long-standing sinus infections have a fungal infection originally came from Mayo Clinic. I do not know what kind of testing they are doing.

Tests are expensive and I figure the chance is very low that my decades-long sinus infection is not fungal. I am going to do the protocol without testing.

 

[switters]

The idea that people with long-standing sinus infections have a fungal infection originally came from Mayo Clinic. I do not know what kind of testing they are doing.

Tests are expensive and I figure the chance is very low that my decades-long sinus infection is not fungal. I am going to do the protocol without testing.

That idea is still controversial. Later research showed that just as many controls had fungal colonization of their sinuses as people with sinusitis. Susan Lynch's work at UCSF found that both controls and people with sinusitis have staph colonization, but the people with sinusitis have lower bacterial diversity and are missing key beneficial species like Lactobacillus sakei. In that case, the treatment would not be antibiotics or antifungals, but nasal probiotics.

In any event, sinusitis is a much different disease than ME/CFS.

 

[psz]

Just checked back on this thread. It seems that Ifish and is family are the only ones here that have experienced noticeable/significant improvement on the protocol. Is that correct?

I have recovered 90+% on this protocol. I've been on it for 11 months now with a 2 month break between the 7th and 9th month. I'll post a detailed summary when I have a while.

What is worth noting is that I had a severe relapse after stopping it and then recovered after restarting which is consistent with Brewer's findings.

 

[switters]

What are people planning to do now that ASL is out of business? Nystatin capsules are easy to obtain, but what about the chelating agent and NasaTouch?

 

[Ifish]

What are people planning to do now that ASL is out of business? Nystatin capsules are easy to obtain, but what about the chelating agent and NasaTouch?

I don't think we can necessarily assume one can just put nystatin powder in solution and spray it in the nose and it will be effective. Perhaps it is, but we can't know this for sure. One thing I do know is that the formulation of nystatin for use in a nebulizer was problematic for quite a long time before it was successfully formulated amd used by Brewer's patients. Apparently it breaks down in solution very rapidly.

I think Brewer knows what is needed and they are working on finding a new compounding pharmacy to make it. Hopefully this will happen relatively soon. I will post it as soon as I know. A short term alternative might be citri drops. There seems to be some positive history using this product. https://www.microbalancehealthproducts.com/ProductDetails.asp?ProductCode=123-002

One thing I should mention at this point. In my opinion, four things are really, really important. The first is to have a baseline test for mycotoxins. The second is to make a minimum of an 18 month commitment - two years is better. The third is the availability of an infrared sauna, that will be used consistently. The fourth is a suitable home and work environment.

The protocol takes time. While you are waiting to get better you will have to have confirmation that changes are taking place. Mycotoxin tests will give you clues as to what is taking place. It can help determine if you are killing mold in the sinuses , whether the sauna is causing the release of mold toxins, whether the body load of mold toxins is decreasing. Without some solid information it is easy to get discouraged and move on to something else, without really finding out if the protocol will work or not.

I appreciate the fact there is reason to doubt. But if one decides to go forward with it you owe it to yourself to do it right.

After leaving her moldy work environment and consistently doing the sauna for about six weeks my wife is much better. She was doing some of it right, but not everything. One thing can make all the difference.