Detection of Mycotoxins in Patients with CFS

[Ifish]

wow, 2/3, that's quite a lot.

To clarify, 2/3 (or about 100 patients) were able to tolerate the treatment. Of this number, 94 percent improved.

 

[Ifish]

Playing the devil's advocate here. Is it possible that what is going on in Brewer's patients is that they are effectively indirectly treating MARCONs due to the fact that the spray prescribed contains EDTA? Did Brewer rule out MARCONs (or other biotoxin producing bacteria) in the patients presumably being treated for fungal infections?

Brewer now believes antibiotic resistant staph infections may be a cofactor in many patients. (I believe Shoemaker refers to this at MACRONS - multiple antibiotic resistant, coagulase-negative staph). He does not seem to think there really is a very good test for it as it can locate too far up in the sinuses to culture without anesthesia.
Dr. Psaltis from Australia has done some interesting experiments with staph and mold in sheep. His group took healthy sheep and divided them into three groups. In 1/3 of the sheep researchers deposited staph into the sinus. A fair amount of biofilm grew.
In another 1/3 of the sheep they deposited aspergillus. A fair amount of biofilm grew.
In the last 1/3 they deposited both staph and aspergillus. The biofilm exploded exponentially.
Brewer's drug of choice to treat staph is mupericin. ASL pharmacies had been producing atomized mupericin, but according to Psaltis the dose was far to small. So now ASL is producing a high dose mupericin (100 mg). Psaltis believes the mupericin at this dose will not only kill of the staph, but will also break up the biofilm, possibly better than the Chelating Px. A fair number of ENTs have used this formulation for chronic sinusitus patients and have been enthusiastic with the results.
Mupericin is one of the ingredients in Shoemaker's BEG spray. I don't know how the dose compares to ASL's atomized mupericin.
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.

 

[Ifish]

Curious how Brewer folks are dealing with bleeding?

About 1/3 of patients can't tolerate the Amph B. Bleeding is one of the issues that is causing problems. Brewer now has about 50 patients on Nystantin. It is not quite as good as Ampho B in the test tube. It does have the advantage that it does not seem to bother the sinus at all. It also does not absorb at all (I think a small amount of Ampho B does absorb), so it is possible to take it multiple times a day.

It is too early to know how effective Nystantin will be. However, a number of Nystantin patients have had die off reactions and the percentage of such patients is similar to the percentage of Ampho B patients that had die off reactions.

He now only has about 15 patients on Intracanazole. He feels it can work but it isn't nearly as good as Ampho B.

 

[boohealth]

To clarify, 2/3 (or about 100 patients) were able to tolerate the treatment. Of this number, 94 percent improved.

Ah yes, internet science. Hearsay.

 

[boohealth]

There is nothing new about this btw. 20-30 years ago CAM integrative med doctors were compounding nystatin and/or amphotericin b for oral troches, oral consumption, and nasal lavage. Whoop ti do now it cures CFS. Not.

About 1/3 of patients can't tolerate the Amph B. Bleeding is one of the issues that is causing problems. Brewer now has about 50 patients on Nystantin. It is not quite as good as Ampho B in the test tube. It does have the advantage that it does not seem to bother the sinus at all. It also does not absorb at all (I think a small amount of Ampho B does absorb), so it is possible to take it multiple times a day.

It is too early to know how effective Nystantin will be. However, a number of Nystantin patients have had die off reactions and the percentage of such patients is similar to the percentage of Ampho B patients that had die off reactions.

He now only has about 15 patients on Intracanazole. He feels it can work but it isn't nearly as good as Ampho B.

 

[m1she11e]

I had my doctor call and order me the protocol. Both the chelating PX and Amphotericin came today. I will not be starting until after 4th of July as we have plans. Don't want to take a chance with any Herx or bad reactions of any kinds until Monday.

I chose to try Brewer's protocol from what I have read here and it seemed to possibly fit my particular illness puzzle. The price was also reasonable and easy for my Doctor to call in for me. Insurance covered some of the cost. I guess I am at a point that I am ready to try new things. Ive been holding just taking anti virals, some supplements and eating very healthy for quite awhile. I intend to continue with those thingsd of course.

I have kind of been just hanging back and watching and waiting... Not really wanting to spend more money, time, get my hopes up or make myself worse.

Finally I just decided to try it and see how it goes. I will update for those that are "watching and waiting."

 

[Forebearance]

Best of luck with the protocol, m1she11e.
I hope it does something good for you.
I can understand your feelings of not wanting to try new treatments until they seem really appropriate for you. I am at that point also.

 

[soulfeast]

About 1/3 of patients can't tolerate the Amph B. Bleeding is one of the issues that is causing problems. Brewer now has about 50 patients on Nystantin. It is not quite as good as Ampho B in the test tube. It does have the advantage that it does not seem to bother the sinus at all. It also does not absorb at all (I think a small amount of Ampho B does absorb), so it is possible to take it multiple times a day.

It is too early to know how effective Nystantin will be. However, a number of Nystantin patients have had die off reactions and the percentage of such patients is similar to the percentage of Ampho B patients that had die off reactions.

He now only has about 15 patients on Intracanazole. He feels it can work but it isn't nearly as good as Ampho B.

Ifish.. wow. Either I have a bad flu or I'm not going through the die off phase. I had a honeymoon period if this is the case. I am still bleeding but not as bad. I have blood in mucus, but it's not bloody as before. Stopped the steroid. I am now rinsing with baby shampoo, xylitol and saline/baking soda packets when I get up. This does help clear things out and though burns, feels relieving. Then a few hours later I use chelating px and my abx. Then evening ampho b. I am not sure if this is die off and not just a flu since my son also came down with something. This is just dragging on and I have never sweat like this or had a low grade fever continually be an issue. I am lucky if I get a fever and if I do have low grade it does not last. This feels different. So wondering if you have experienced of heard of others having low grade fevers with this and sweats.

 

[Ifish]

Ifish.. wow. Either I have a bad flu or I'm not going through the die off phase. I had a honeymoon period if this is the case. I am still bleeding but not as bad. I have blood in mucus, but it's not bloody as before. Stopped the steroid. I am now rinsing with baby shampoo, xylitol and saline/baking soda packets when I get up. This does help clear things out and though burns, feels relieving. Then a few hours later I use chelating px and my abx. Then evening ampho b. I am not sure if this is die off and not just a flu since my son also came down with something. This is just dragging on and I have never sweat like this or had a low grade fever continually be an issue. I am lucky if I get a fever and if I do have low grade it does not last. This feels different. So wondering if you have experienced of heard of others having low grade fevers with this and sweats.

No one in my family had low grade fevers or sweats. Brewer never mentioned this, but there wouldn't have been a reason to so I really can't say if any of his patients experienced this. My 18 year old has had swolen glands which became worse when she started mupericin. In fact the mupericin has started a significant die off reaction with her.

You are doing a heck of alot of stuff all at once. Perhaps you should ask you doctor if you should cut back on something. I couldn't hack daily AmphoB and I was able to stay with it when I went to every other day.

One side note I didn't mention before, Brewer wants us to eventually work our way to twice daily AmphoB. I'll have to make it to once daily first!

 

[m1she11e]

I started the protocol on Monday. It is Wednesday and I really don't feel well today at all. Frankly I am a little surprised and not even sure it is due to the protocol. It seems quick to be getting a "herx."

The last year or so I have been highly functioning in the world of sick people. I work part time and work out pretty hard 5 days a week. This has not always been the case in the 33 years that I have been sick.

Today I am having a semi truck collision sort of day. I have not had one of those in awhile and it may just be a cycle and coincidence because I do have my bad days for no apparent reason. My sinus' ache but I am sure it is due to the fact that they don't love that Amph B. It is tolerable so far. (She says after 2 days) The Chelating PX actually makes my sinus' feel better. I also have quite a lot of head pressure and a headache. As far as a sore throat, I get those when I use a Netti pot (rarely do and am not doing currently) due to the drainage so I think that is why I have a slight one now. Oddly, I have literally passed out asleep after using the Amph B at night. (After blowing my nose and trying to breathe that is) Usually I have a hard time falling asleep but I feel as if I have a head cold and just fall straight to sleep after the Amph B. The Chelating PX actually feels good on my sinus' and has no immediate physical effect on my body.

Im not going to the gym today and it is one of the things I most look forward to. I believe I am going to spend most of the day on the couch and that just rarely happens any more. To be honest I really didn't see nasal treatments landing me on the couch despite what I read here. I will see, as it could just be a cycle as I have said.

Any feedback on those that are doing it? Did you start to feel bad within days of starting?

 

[Ifish]

Three of us in my family had pretty much the same response. Immediately feeling worse, especially the fatigue. So I'd say things are happening the way they are suppose to. Brewer says only a minority of patients have die off symptoms, but it seems like more than that to me.

 

[Forebearance]

Thinking of you, soulfeast and m1she11e.
You know, soulfeast, I had similar types of symptoms when I took too much of the simplified methylation protocol supplements and began detoxing too hard.

 

[Soundthealarm21]

Interesting that Dr. Shoemaker apparently treats for biofilms, but uses antibiotics instead of antifungals, at least according to ggingues at the bottom of this page:

http://forums.phoenixrising.me/inde...ling-with-sinus-issues.2086/page-2#post-51646

I find that interesting that he uses antibiotics for the biofilm. The whole idea of biofilm is that it protects against antibiotics. One would need something to break up the biofilm, such as EDTA, and then antibiotics and antifungals to kill what is inside. I take all 3.

 

[Ifish]

Medical student astonishes experts with major Cystic Fibrosis treatment breakthrough

A medical student has astonished scientists after her summer project resulted in a major breakthrough in the study of Cystic Fibrosis.

Jo Armstead, 21, spent hundreds of hours examining medical data from 30 countries and discovered that half of adults who suffer from the rare genetic disorder are infected with a fungus called aspergillus.

Her work is being hailed as a major breakthrough that will help doctors to diagnose and treat patients with the condition.

Jo, from Altrincham, has now had her findings published in a prestigious medical journal and has won recognition from one of the country’s top Cystic Fibrosis experts

http://www.manchestereveningnews.co...armstead-cystic-fibrosis-breakthrough-7310157

 

[Skiii]

So glad to have found this, and to hear updates and how others are doing.

I've been on binders for 2.5 months and just got the prescriptions for AmphoB and EDTA, that I will start soon. Trying to expect and prepare for the worst, though my doctor wants me to start very slow.

Ifish- I am similar to your older daughter, I have chronic muscle aches/knots, fatigue, sleep and memory issues but live a fairly full life.
How quickly did the fatigue/aches hit? I have a job on the 26th that I'm trying to plan around. Also, does Brewer recommend anything to help against the die-off symptoms? I'm still taking binders which is fine with me, my bodies does not detox efficiently and anything to help get them out of me quicker is ok. Also doing saunas. I'm also wondering how long I will be on protocol, knowing I am on the healthier side of patients and also that I tested positive for Ochratoxin A- I was encouraged to read that Brewer's had the most success removing that!

 

[Skiii]

Forebearance, I too have had horrible muscle ache and fatigue any time I try even a tiny bit of methylation supplements. My body couldn't even tolerate a small amount of methylfolate or methyl b12. Also just realizing that as I increased glutathione I had the same symptoms.

 

[Ifish]

So glad to have found this, and to hear updates and how others are doing.

I've been on binders for 2.5 months and just got the prescriptions for AmphoB and EDTA, that I will start soon. Trying to expect and prepare for the worst, though my doctor wants me to start very slow.

Ifish- I am similar to your older daughter, I have chronic muscle aches/knots, fatigue, sleep and memory issues but live a fairly full life.
How quickly did the fatigue/aches hit? I have a job on the 26th that I'm trying to plan around. Also, does Brewer recommend anything to help against the die-off symptoms? I'm still taking binders which is fine with me, my bodies does not detox efficiently and anything to help get them out of me quicker is ok. Also doing saunas. I'm also wondering how long I will be on protocol, knowing I am on the healthier side of patients and also that I tested positive for Ochratoxin A- I was encouraged to read that Brewer's had the most success removing that!

Skiii,
There is alot of variation among patients, as best as I can tell. Three of us in my family had almost immediate die off symptoms, so it can hit fast and hard. It sounds like alot of folks don't get any die off reaction at all.
My wife has worked full time throughout, although it certainly was not easy for her. At times she took days off so she could manage her way through it..
Brewer does not recommend anything for the die off other than reducing the treatment. In some cases he has patients (me included) cut back to every other day or even every third day. I think in some cases he even had patients reduce the dosage as well.
The length of the protocol is unknown. Brewer has about 25 patients that have gotten well. Some of them tried to go off the protocol but gradually relapsed. It looks like this is something you have to stay with for a very long time. I feel it is safe to say even a healthier person is looking at a minimum of six months.

 

[Skiii]

Thank you so much for sharing, Ifish.

On another note, I was discussing lack of restful sleep with my doctor, and we were discussing the use of melatonin and other herbal supplements to try. Then I was just researching Ochratoxin A and came across this:
http://www.ncbi.nlm.nih.gov/pubmed/17365150

Sounds like melatonin and coenzyme Q10 might be good things to add to my regimen anyway.

 

[Christopher]

I hope this is not off topic, but has anyone tried nasal rinses with antifungals like grapefruit seed extract and water? I'll do it occasionally and find it helpful. My partner has sinus congestion sometimes, and if we're close, I will sometimes get sinus drainage and anxiety immediately afterwards. If I rinse afterwards, those symptoms die down.

 

[Ifish]

I find that interesting that he uses antibiotics for the biofilm. The whole idea of biofilm is that it protects against antibiotics. One would need something to break up the biofilm, such as EDTA, and then antibiotics and antifungals to kill what is inside. I take all 3.

Brewer told us of a study comparing the ability of different antibiotics to break up biofilm. Vancomycin and Cipro had zero effect on biofilm. Mupericin reduced biofilm by 95%. It is my understanding that Dr. Psaltis from Australia believes that mupericin might be more effective than Chelating Px in breaking up biofilm. In my current regimen, I use mupericin, Chelating Px and Ampho B.