posted
The info on toxin clearing time isn't in that paper. I thought that is where I read it. I'm going to look through some things that I saved and see if I can come up with it.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I'm not doing the treatment right now. I get my SinusSooth in a few days and will begin with it. I'm just taking a break.
I'm not taking ABX right now. MY CD57 is low-but-normal so we're off them for now.
I didn't have time to read all the paper, but 1 month doesn't seem very long if the toxins can actually keep recycling through the intestinal track.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Ahhh, ok then. I feel like it should take years. Especially if the binder doesn't strongly work against the specific toxins.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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I am also a Brewer patient. It has been a hit and miss learning curve for him. He has now has now settled on a rather simple protocol:
1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning 2. Amphotericin B in the evening
Over 90% of his patients can tolerate this. He is working with ASL to develop other atomized fungal medications that might be easier to do. Nystantin is one that just became available. The results he reported to me are quite exciting. I wouldn't give up on it.
Posts: 27 | From USA | Registered: Mar 2014
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I did it three days in a row and my post nasal drip was completely gone. It came back though after a few weeks. I'm going to start doing it every other day, with a saline rinse on my day off.
The big question is this. What will happen when I add the Ampho B? I went off abx for six weeks in January and I had a big Bart relapse.
Regarding that, I don't think that Septra with Mino and Zithro will clear the infection...based on my experience. I'm taking the whole dose of Rifampin one time a day in the morning. This is making me herx like crazy unlike the Septra protocol.
When the Bart herxing subsides I will go back to addressing the sinus problem. I did have that cat scan and it came back all clear, the ENT said my sinus looked perfect, other than having a deviated septum.
Ifish, thanks so much for your post. Please keep us updated as you find out more. I think I'm going to ask my LLMD for the atomized Nystatin instead of the Ampho B.
Posts: 845 | From Northeast | Registered: May 2011
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posted
RC1 I would encourage you keep working on the sinus/mold issue. I've known Brewer for 17 years. I spent alot of time with him last week. He told me about patient success in great detail. He is on to something major.
Posts: 27 | From USA | Registered: Mar 2014
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posted
Thanks Ifish, I plan on it. I am only willing to herx one thing at at time at this point. I've been at this too damn long. I don't want to go back to being disabled.
I too, think he's on to something big here...Thank god for docs like him. Ones that are searching for new answers to old questions.
Posts: 845 | From Northeast | Registered: May 2011
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quote:Originally posted by Ifish: RC1 I would encourage you keep working on the sinus/mold issue. I've known Brewer for 17 years. I spent alot of time with him last week. He told me about patient success in great detail. He is on to something major.
Has Dr. B spoken to you about Sinusoothe? How long have you been treating your sinuses?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
thehause, He did not talk about sinusoothe. If you cannot tolerate Ampho B then nystantin is a possibility, but it is very early on this one. (Only one patient is using it) He is also working with ASL to develop kinder delivery systems for the Ampho B. He is also quite enthusiastic about Micafungin which is now IV only but ASL is working on making it available as an atomized medication.
I haven't started the treatment yet. I will later this week. A couple months ago I started using atomized antibiotics through my ENT and it has helped me a great deal.
Posts: 27 | From USA | Registered: Mar 2014
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posted
I did Ampho B, via two different methods, for about a year along with intranasal ABX. I'm now only doing Sinusoothe, and sometimes intranasal glutathione. I don't really notice a huge difference yet.
I'm pretty sure I have rhinitis from the Sinusoothe. I do have some chelating agent from ASL - though I don't recall what it is anymore. I have had sinus issues since childhood.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Ifish and RC1, Does Brewer have you use charcoal daily or twice daily (as I hear some of the mold doctors do along with other binders in a cocktail)?
I understand that the charcoal is more to mop up dead mold spores.. ?
I have an issue with histamine intolerance and mast cell activation that may have been triggered by the infection in my sinuses (which may still be there in biofilm post surgery).
Dr Grant (Irene) did mention mast cells in an online interview I listened to recently. She is also using a similar protocol. She said that mast cells react (spill contents/degranulate) to hyphae.
Ampho B is contraindicated for people with mast cell activation.. I'm wondering if you have heard any mention of voriconizole as an alternative. I'm reading above that nystatin might me an alternative Brewer is trialing in this thread or another. I thought nystatin only addressed candida?
The mast cell activation and histamine intolerance have become a real issue. I am on meds and herbs to control this. The concern with Ampho B is anaphylaxis.
Posts: 3 | From US | Registered: Jul 2010
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posted
Hi Learning, I am not a patient of Dr. Brewer. My LLMD saw his presentation at the ILADS conference. Yes to charcoal. I was doing Welcol alone for a bit during this protocol in the beginning. Charcoal added in made a big difference with how I was feeling daily.
Some are saying to take them at the same time, but for me they seem to work better taken apart from each other.
I can't advise you about the mast cell thing and Ampho B. All I can say is only 5% enters the bloodstream, I don't know if it being such a low dose, would it cause problems for you?
The nystatin is a new formula that can be atomized.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I asked Brewer specifically about binders and he no longer recommends using them. His patient have used them in the past with no apparent effect. His thought process is this: By virtue of the fact a patient tests positive for mycotoxins shows the patient can detox. The urine sample has mycotoxins in it, therefore it is leaving the body. It is all about input and not output. Take care of input and the output will take care of itself. He mentioned patients with a known exposure many years ago. They are detoxing just fine but are still sick.
ASL is producing voriconizole. Brewer has used it with many patients but he does not feel it works as well. About 10% of his patients cannot tolerate Ampho B and he is looking for alternatives. Some antifungals have a short life when mixed in the atomizable solution so this has been a problem. Nystantin is now available but he has just started using it, so its efficacy in this setting is unknown. Brewer is more excited about micafungin. A patient of his had excellent results with IV micafungin. ASL is working right to formulate this medication in an atomizable form.
So right now you can try either voriconizole or nystantin. Eventually you should be able to try micafungin. Do not forget about Chelating PX. If the biofilm is not broken down the antifungal will have limited efficacy.
I cannot comment about mast cell activation and histamine intolerance. I never discussed that with Brewer.
Incidentally, we have three family members on the protocol. We have all been able to tolerate the treatment just fine. We have all experience significant die off symptoms.
quote:Originally posted by learning: Ifish and RC1, Does Brewer have you use charcoal daily or twice daily (as I hear some of the mold doctors do along with other binders in a cocktail)?
I understand that the charcoal is more to mop up dead mold spores.. ?
I have an issue with histamine intolerance and mast cell activation that may have been triggered by the infection in my sinuses (which may still be there in biofilm post surgery).
Dr Grant (Irene) did mention mast cells in an online interview I listened to recently. She is also using a similar protocol. She said that mast cells react (spill contents/degranulate) to hyphae.
Ampho B is contraindicated for people with mast cell activation.. I'm wondering if you have heard any mention of voriconizole as an alternative. I'm reading above that nystatin might me an alternative Brewer is trialing in this thread or another. I thought nystatin only addressed candida?
The mast cell activation and histamine intolerance have become a real issue. I am on meds and herbs to control this. The concern with Ampho B is anaphylaxis.
posted
What if the biofilm / mold colony is not in the sinuses but in the lungs?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Brewer thinks the issue is the sinuses in the vast majority of cases. I don't know how you determine if there is colonization in the lungs or how it is treated.
quote:Originally posted by thehause: What if the biofilm / mold colony is not in the sinuses but in the lungs?
posted
Mostly, more fatigue and malaise. My wife and daughter have treated for just over a week and it seems to be easing now. I am only on my third day and I'm really feeling it right now, but if it eases up in another week or so, it will be OK.
quote:Originally posted by Jane2904: Hi Ifish,
What were the die off symptoms you and your family experienced?
Interesting that Dr. Brewer is not using binders now.
posted
I treated with Brewer as well. I took Vora and Ampho intranasal and notice no die-off symptoms. I don't know that there are any specific to die-off. That said, my mold test was really high, so perhaps I am too sick to notice.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Jane2904
Frequent Contributor (1K+ posts)
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posted
Thanks Ifish,
Good luck to you and your family with treatment.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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CherylSue
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posted
What binders is B....r not using? CMS? Questran? So he doesn't do Dr. S's protocol?
Posts: 1954 | From Illinois | Registered: Aug 2007
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Jane2904
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posted
Bringing this up to see if any updates with those treating.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
I am not treating it right now. I have my hands full with this Bart relapse, or should I say under treated Bart, that came back full force. I do want to get back at it but I've had a big setback. I can't do both because I won't be functional.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Jane2904, Sorry, I haven't been on this forum for a while. Here is an update. My wife, youngest daughter and I have entered into the third month of the treatment. My oldest daughter has returned from college and is now in her second week of treatment.
I have been ill for nearly 23 years. During time, I have been able exercise minimally. Over the last couple of years I've lost this ability altogether. I have not exercised even a single day for the past year and for about two or three years prior to that only very rarely.
I suddenly gained the ability to exercise about a week ago. I am now able to walk a couple of miles, about 30 minutes on most days. I now know I feel better and I have more energy than I did prior to the protocol.
For the last couple of weeks my wife has said she is "definitely" better than before she started the protocol. She is not well by any means, but there is a clear and noticeable difference.
My youngest daughter is by far the sickest. She is 18 years old and had to quit school when in the 6th grade. She has not been well enough to even tutor at home for the last 3 1/2 years. Her excursions outside the home are very limited due to her neurological symptoms. The only thing I can say for certain is that she is feeling better than she did during worst of the die off. I am not sure if she is better or not than she was prior to the start of the protocol.
My older daughter is the least effected by the illness. She lives a fairly normal life, but has a great deal of fatigue and sleep issues and other symptoms. The start of the protocol has effected her similarly to the rest of us but she is still very active. She is definitely feeling worse from the die off.
What really stands out about the treatment is how much is effects fatigue and malaise. During the die off I often slept 10 hours a night, sometime more, while barely moving a muscle. In order to get through it we had to pare down our activity level to the bare minimum. The good news for the three of us is that the worst seems to be over.
Posts: 27 | From USA | Registered: Mar 2014
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posted
Thank you for the update, Ifish. Glad to hear that 3 of you are making progress.
Can you tell me exactly what your protocol is? I have tested positive for aspergillus in both my sinuses. Was doing a different protocol with minimal success.
Thanks so much!
Posts: 486 | From USA | Registered: Jan 2012
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For some the die off is too much and he will reduce the protocol to every other day or every third day. Some patients connot tolerate the amphotericin B. I beleive he is using nystantin for most of these patients.
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quote:Originally posted by CherylSue: What binders is B....r not using? CMS? Questran? So he doesn't do Dr. S's protocol?
Brewer's protocol is entirely different the Dr. S protocols. He feels the issue of mold patients is the continuous production of myctoxins growing in the sinuses. He does not feel the issue lies with an inability to detox, thus is generally does not recommend binders.
Posts: 27 | From USA | Registered: Mar 2014
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posted
birdie67, It has been a tough ride but things are really looking up for us now. Just remember that the die off is difficult, but you have to keep your eye on the prize. I suddently got better in the third month. My wife is better but really up and down. My youngest daughter seems to be slowly working her way up to the break even point. So it is highly variable. Best of luck and let us know how you do.
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Jane2904
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posted
Thanks for the update Ifish, so glad to read that things are improving for you and your family.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
My wife and I took our 18 year old to see Dr. Brewer. Much has happened in the three months since we saw him last. We covered a significant amount of information which I plan to post, but I will need to do that in installments.
RealTime Labs has formed a scientific committee with eight members. All are MDs or PhDs. Brewer is on this committee. They have collected data on approximately 300 patients. Of this number Brewer has attempted to treat approximately 150 patients on the AmphoB/Chelating Px combo. About 1/3 could not consistently stay on it due to side effects from the AmphoB, including nose bleeds. (He is developing alternatives - more on this later).
Of the remaining 1/3 (approximately 100 patients) 94% have reported improvement and approximately 25% have returned to normal. These patients have been on the protocol on average about 6 months. The 6% that did not improve are not necessarily lost causes. Some might need more time, some might have bacterial infections holding them back. (Brewer believes that antibiotic resistant staph infections may be involved in many patient - more on this later).
Brewer will use this data to publish another paper. This might happen within the next couple of months or so. He recognizes that it will fall short as far as a lot of folks are concerned, since it is not a blinded study and improvement is measured subjectively. One thing that will be measured and reported scientifically is a drop in mycotoxin levels due to this treatment. This drop in mycotoxin level corresponds directly to improvement in reported symptoms.
He has discovered that it can take a very long time for extremely ill patients to improve. He recently saw a patient who had a slight, if any, improvement at six months.(This patient had been bed ridden with extreme abdominal symptoms including vomiting several times a week.) At one year on the treatment the patient is 50 to 60% improved and is continuing to improve.
We reviewed my daughter's laundry list of symptoms including anxiety, nausea, sensitivity to light, sound and touch and bladder and gastrointestinal discomfort. All of these issues have improved in one patient or another. Some patients have experienced a complete resolution of these type of symptoms.. Therefore, there exists a possibility of improvement in all these areas. (In fact my daughter did report improvement in some of these symptoms)
Six of Brewer's patients who became well attempted to discontinue treatment. All gradually relapsed over a long period of time but improved again upon retreatment. He does not know how things would be handled long term. Maintenance dosing might be required or the mold colonization might be completely eradicated if treated long enough.
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Jane2904
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posted
Thanks so much for the update IFish,
Glad your daughter is improving.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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I was tested by nasal swab and it was cultured. It took about 3 weeks for results. I will go back through my labs and see what lab it was, I can't remember.
I now doing BEG nasal spray and also Itraconazole. I also take cholestyramine to mop up the toxins that are being flushed through my sinuses.
I am seeing improvement. It is slow, but it is happeneing.
Posts: 486 | From USA | Registered: Jan 2012
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posted
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 to 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 the 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.
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posted
Ifish - how recent was your discussion with Dr. Brewer? Any idea on cost?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
All my other scripts from ASL Pharmacy have been treated like any other prescription medicine, so it should be covered by insurance. I just saw Brewer last week.
Posts: 27 | From USA | Registered: Mar 2014
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posted
Very interesting that Dr Brewer isn't using binders any more. I have noticed a slight improvement on them, and absolutely no side effects, so heck I'll keep taking them if they help me eliminate this stuff even a little bit quicker!
Posts: 2 | From New England | Registered: Jul 2014
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posted
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.
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Jane2904
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posted
Hi Ifish,
Thanks for the updates.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
OK, I have results that surprised me so I am needing some feedback. When I started on this journey three years ago, my first LLMD tested for the HLA gene test.
I tested positive for the gene that does not detox mold well. It was no surprise to me as I seem to react in moldy environments.
I was also in a WDB for a brief time in college.
When my progress in treatment stalled, I thought now would be a good time to look at the mold issue.
I just received the results back from my LLMD and all three types were negative. The only group that showed any detectable levels was the trichothecene at .11 ppb.
I can hardly believe it. I really was hoping that this was the missing piece. I have done a little research on the internet and read that Dr. Lisa Nagy says the use of a sauna can increase the numbers.
Has anyone heard about that? Also, increase the numbers from negative to positive? Can I rest assured that the negative is truly a negative?
Arrggghhh?!!! Help anyone?
Posts: 538 | From kentucky | Registered: Nov 2011
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posted
Did you do a urine test? If so, I'd generally accept the results. Not a lot of gaming there and they account for dilution levels due to water intake.
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