Detection of Mycotoxins in Patients with CFS

[Forebearance]

I've been doing this for a year and 3 months now, and it has changed my life.
True, I'm doing it REALLY slowly, but I have been able to stand buildings I couldn't stand before, and do some travel that I couldn't have done before.
People I know are starting to remark that I look better. One person said I seem 'more bouncy".
I love Dr. Brewer.

How are you doing, Skiii?

 

[foxy loxy]

Forbearance, what happens to you when you get into certain buildings? For the life of me, even tho I tested positive for mycotoxins, I have no allergies, no building intolerances no congestion etc. Am I crazy? (maybe...) hmm maaaybe a fair amount of sneezing?

 

[Skiii]

I'm glad to hear that Forebearance. I'll try to hold some hope.

I went off the sprays after 3 months, I'm such a slow detoxer that I just couldn't tolerate the fatigue and herx symptoms, even doing CSM and charcoal twice daily, while only doing a half-dose of Nystatin every 3-4 days- while also being a parent. I just needed to feel healthy for a while. So, I was trying to do that (keeping up with binders, exercising, etc) and was doing better, but then seem to have taken a down turn. I now have CFS/fibromyalgia symptoms all the time, when I didn't have them before this treatment. Before the treatment I was basically an average person with muscle pain, now I sleep 9 hours, am barely functioning in the morning, and still have so much fatigue. I'd like to talk to an ENT but just haven't mustered up the energy yet.

On that note, I was thinking of maybe trying the Nystatin again, just extremely slowly (1/2 dose once a week? Is anyone else doing it THAT slowly? Sigh). However, my insurance just declined to cover the CSM for me... and I know for sure I can't tolerate the treatment without binders (I *really* felt the symptoms if I missed a day of binders). So I need to get that figured out.

 

[Skiii]

On another note, it seems we will finally get a much anticipated update from Dr. Brewer and colleagues tomorrow, as I saw Gordon Medical post that Dr. Nathan will have him on the show tomorrow to discuss the latest updates!

http://www.gordonmedical.com/unrave...the-diagnosis-and-treatment-of-mold-toxicity/

 

[Forebearance]

Oh wow, that is great news about Dr. Brewer talking to Dr. Nathan on his show!

Oh Skiii, I must be even a slower detoxer than you are. I am taking about three-four flakes of Nystatin every four days. I figured out that it takes me four days to detox the effects of one dose. So for me, spreading the doses farther apart would be counter-productive. I start to feel bad again if I don't take Nystatin every four days.

So my suggestion to you would be to find a dose that you can tolerate. How about way less than half a dose of Nystatin? I promise you that no police will show up at your house if you take just one flake of Nystatin. Who cares what other people take? That is my attitude. I adjust all treatments to fit my needs.

The great thing about this treatment is that it IS adjustable to anyone's needs and it still works. If you get the right dose of Nystatin for you, it will actually feel good instead of bad when you take it.

There is an element to this treatment that feels like we are fighting something that may be fighting back. Whatever is living in my sinuses doesn't want to be killed off. It's comfortable in there. So I am horrified that you feel worse now, but not totally surprised.

Hey @foxy loxy! I have been sensitized to mold toxins by practicing mold avoidance for 7 years. The first 18 years of my illness, I couldn't feel anything either. You're not crazy at all.

The symptoms people get when they are sensitized to mold toxins and they get an exposure to them can vary a lot from person to person. For me, I usually get pain in my kidneys, burning skin, blurry vision, light-headedness, a need to sit or lie down, etc. It depends somewhat on the type of toxin that it is.

Fore

 

[Ifish]

Any updates? Anyone have newer info from Dr. Brewer?

I saw Brewer recently. Some of the new developments were covered in the recent radio show and some were not.

Probably the most important item is the development by RealTime Labs of a test for gliotoxin. Aspergillis and Candida produce gliotoxin. Positive tests for this mycotoxin could change treatment in the future, but it’s early in the process.

RealTime Labs is going through the process to obtain FDA approval of their mycotoxin tests, but since this is a new test, it is taking time. I am completely confident in the tests and have some major concerns about other mycotoxin tests on the market. FDA approval would cause major changes in how the RealTime tests are viewed and would really push things in a positive direction.

Nystantin is showing to be just as effective as AmphoB. He is publishing a paper on this which should be available any day.

Overall about 80 – 85% of his patients have improved and about 20% of patients are either well or nearly well.

It is my observation there is decreasing importance being place on Shoemakers “dreaded genes”, even among physicians who have gone through his training program. Brewer has started testing his patients for the presence of two MTHFR genetic variants (C677T and A1298C). Of 60 patients tested prior to my visit 58 have one or both. Interestingly neither I, nor my two daughter have either variant. He is trying a simple supplement regimen with his patients in an attempt to jump start the methylation process. It is early in the process, but many patient have experienced what seem to be fairly significant detox reactions.

 

[Forebearance]

Thanks, Ifish! That is interesting.

I know Dr. Brewer has used the Simplified Methylation Protocol in the past with his patients.
It also causes significant detox reactions in many people.
How is the new simple supplement regimin different from that, I wonder?

I look forward to his next paper!
Forebearance

 

[mamakate]

We also recently had an appointment and learned some of the same things as Ifish. My husband found out he has one of the genetic mutations mentioned and will be starting a new supplement as a result. It's methylfolate with b12. He recommends taking it really slow because of potential detox reactions.

Overall my husband is continuing to make huge improvements on this protocol. Not every day is good, but he's having more and more good days, and even great or awesome days. Whenever he gets a cold he backtracks a bit because his sinuses are clogged, but other than that we've seen really steady improvement. We are seeing the light at the end of tunnel.

 

[acer2000]

I think this was discussed before, but has Dr Brewer made any progress on culturing whatever he is treating in the nasal cavity?

 

[Ifish]

I think this was discussed before, but has Dr Brewer made any progress on culturing whatever he is treating in the nasal cavity?

Dr. Brewer does not do fungal cultures. You might be familiar with the 1999 Mayo Clinic study indicating fungal infections are the primary cause of chronic sinusitis. I have seen an ENT for a number of years and we have discussed this study on several occasions. He indicated that the Mayo Clinic used very sophisticated methods to detect the presence of fungus in the sinuses and that these methods are unavailable and impractical for the average ENT to use. So it does not sound likely that Brewer could go down this road.

 

[jason30]

I am reading this thread with a lot of interest. I have a lot of complaints due some mold toxicity and I wonder if someone knows if there is a possibility to test for mycotoxins in Europe?

Also, the hyperbaric oxygen treatment (HBOT) looks very interesting.
I'm new with this method, but I wonder if the following finding works the same as HBOT:
Recently I was in a room with a lot of people, within 30 minutes my brain fog cleared up; I was be able to think clearly and I had more focus and better concentration. I guess the many CO2 is responsible for this. Is this positive reaction similar to HBOT?

 

[JCamp]

Overall about 80 – 85% of his patients have improved and about 20% of patients are either well or nearly well.

Did Brewer mention if he has ideas explaining who would respond and who wouldn't? I'm one of the 20% -- been doing this treatment for 18 months with no related improvement. It's been a lot of time and money invested since Brewer kept encouraging me to keep going. I have never had sinus symptoms and always doubted there was mold there. I'm planning to end the treatment when my next bottle runs out.

 

[acer2000]

Dr. Brewer does not do fungal cultures. You might be familiar with the 1999 Mayo Clinic study indicating fungal infections are the primary cause of chronic sinusitis. I have seen an ENT for a number of years and we have discussed this study on several occasions. He indicated that the Mayo Clinic used very sophisticated methods to detect the presence of fungus in the sinuses and that these methods are unavailable and impractical for the average ENT to use. So it does not sound likely that Brewer could go down this road.

I'm glad this treatment works for a large number of people. I just think that at some point someone should answer the question of what exactly is being treated here. It would foster more research on this approach. Maybe he could partner with a group that could answer this question?

 

[Forebearance]

Yeah I agree, @acer2000.
We need a researcher to investigate why this treatment works and what exactly is going on with it.

 

[Forebearance]

Also, the hyperbaric oxygen treatment (HBOT) looks very interesting.

Hi @jason30 ! You might want to ask your HBOT quiestion in a thread that is discussing HBOT.
I saw there was a thread in the Alternative Treatment section about it.

 

[cigana]

It is my observation there is decreasing importance being place on Shoemakers “dreaded genes”, even among physicians who have gone through his training program. Brewer has started testing his patients for the presence of two MTHFR genetic variants (C677T and A1298C). Of 60 patients tested prior to my visit 58 have one or both. Interestingly neither I, nor my two daughter have either variant.

Interesting, I have both of these variants.

 

[dannybex]

@Ifish -- I'd be curious to know if he's testing for any other genetic polymorphisms besides the two?

If not, do you know why he's zeroing in on just those two?

 

[Soundthealarm21]

Hi @jason30 ! You might want to ask your HBOT quiestion in a thread that is discussing HBOT.
I saw there was a thread in the Alternative Treatment section about it.

Well this thread is kind of about mycotoxins and treating them in general. It just turned into discussing Brewer and amphoB kind of stuff a while back. That and @foxy loxy and I have discussed HBOT in this thread so I see why @jason30 would ask in it. Lol regardless of that explanation,

Recently I was in a room with a lot of people, within 30 minutes my brain fog cleared up; I was be able to think clearly and I had more focus and better concentration.

I honestly don't have the slightest clue as to why you'd start feeling better around a bunch of people. That's a weird one for sure.

 

[roller]

perhaps an adrenalin boost?

 

[Soundthealarm21]

perhaps an adrenalin boost?

Not sure if you were responding to my post.

If you were:

Yeah this is what I was thinking. Adrenaline can definitely help you out. Could be that being around a bunch of people increased your stress levels and your body responded @jason30 although I definitely have no way of knowing that. Just a hunch.