aquariusgirl
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Is there a difference v. Mycotoxins & yeast? Should I be on nystatin?
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Detection of Mycotoxins in Patients with CFS
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aquariusgirl
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Bump
aquariusgirl,
I can't give you medical advice, only food for thought. The Brewer protocol requires consistancy over a very long period of time. It can take anywhere from a couple of months to a couple of years to see results. Why did you only do it on and off? Perhaps you should consider following his advice rather than try something (copper) that is less proven. After all, he has used his protocol with hundreds of patients and has published his findings.
It is noteworthy that Brewer has tried oral antifungals with poor results. I assume the copper supplement is taken orally. If so, why do you think the copper would be better? What information has been published that would demonstrate that oral copper works better than atomized Nystantin on chronic fungal sinusitus?
aquariusgirl
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Yes, maybe I messed up.. or maybe you're never going to get fungal infections under control w/out sufficient copper.
I didn't mean to suggest you messed up. If it came across that way, I apologize. I was trying to help you think it through. It is never too late to start again with the Brewer protocol. As far as the copper supplement is concerned, I'm sorry to say, I just don't have any information on that, one way or the other.
aquariusgirl
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Oh no offence taken. I was thinking aloud ...
I wish I had been more consistent because then I would know if the copper supplementation has been a factor in my response. Bummer.
I wish I had been more consistent because then I would know if the copper supplementation has been a factor in my response. Bummer.
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aquariusgirl
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I know this was discussed somewhere before ...why did folks give up the 2x a day dosing?
Chelating Px too harsh? Thanks
Chelating Px too harsh? Thanks
Gingergrrl
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Yes and my understanding is that yeast is a type of fungus (such as candida, etc) but mycotoxins are the toxin/poison that is produced by mold. So you could have a specific kind of mold in your home, for example black mold or Stachybotrys, and you could eliminate the mold, but you cannot kill the mycotoxins that it produced which are Tricothecenes. Someone please correct me if I am wrong!
Forebearance
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Hey @aquariusgirl , I decided to try some copper bio citrate because of your post. (I was too cheap to buy the expensive copper supplement you're taking.) It made me detox a lot. So I think I would need to be very careful with it. It made me constipated, which prevented the toxins that were released from moving out, which was not good.
It also gave me a patch on my wrist of something that looks like it could be psoraisis. (sp?) I think that is caused by an over-active immune system. So basically I need to be careful with copper amounts, but it seems helpful in tiny amounts.
As far as I know, Dr. Brewer does not think that we have yeast growing in a biofilm in our sinuses. I think he suspects other kinds of fungi are up there. Sorry that I don't know the answers you are seeking.
It seems like I've been going through some new phases of this Brewer protocol. My joints have been making a lot of popping and cracking noises. Especially the joint where my skull meets my spine. It doesn't hurt. It's just surprising. It's been associated with detoxing in the past, for me.
And I've been getting waves of severe exhaustion, similar to what it felt like when I first got ill. One day when I took a dose of Nystatin, the exhaustion lifted. So maybe the fungi are fighting against the treatment. Maybe???
I think these new phases are probably signs that the treatment is working.
But they are forcing me to take it really easy these days. Unlike in the beginning when I actually had more energy.
How are you doing, Skiii?
It also gave me a patch on my wrist of something that looks like it could be psoraisis. (sp?) I think that is caused by an over-active immune system. So basically I need to be careful with copper amounts, but it seems helpful in tiny amounts.
As far as I know, Dr. Brewer does not think that we have yeast growing in a biofilm in our sinuses. I think he suspects other kinds of fungi are up there. Sorry that I don't know the answers you are seeking.
It seems like I've been going through some new phases of this Brewer protocol. My joints have been making a lot of popping and cracking noises. Especially the joint where my skull meets my spine. It doesn't hurt. It's just surprising. It's been associated with detoxing in the past, for me.
And I've been getting waves of severe exhaustion, similar to what it felt like when I first got ill. One day when I took a dose of Nystatin, the exhaustion lifted. So maybe the fungi are fighting against the treatment. Maybe???
I think these new phases are probably signs that the treatment is working.
But they are forcing me to take it really easy these days. Unlike in the beginning when I actually had more energy.
How are you doing, Skiii?
aquariusgirl
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@Forebearance are u using nystatin or Amphotericin B or both? Tnx for responding
Forebearance
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Nystatin.
aquariusgirl
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Is that better for you or did u not do ampho B? Do you do EDTA w/the nystatin? Tnx
I was on the protocol for 6-8 months at least (with Dr. Brewer directly). Nystatin and Ampho-B; used ampho the longest. However the protocol was triggering my ocular migraines like mad so I stopped last summer. Before all of this our house had mold in it; I had house cleaned up as best as could be. And added a photocatalytic oxidation system to the HVAC unit.
** I don't recommend any of the following I am just documenting this
I was starting to have good days while on the meds, very much so. During those good days I would push myself riding bicycle and sweating a bunch in the sun. I noticed I felt MUCH better after sweating. So I kept at it; and it made a huge difference. I found the less I moved around the worse I felt; even if it was just walking. In the beginning it was terrible; took months to be able to "exercise" but once I found what I could tolerate I stuck with it. I have been off the meds for a bit now and on another protocol (from Dr. Brewer) on a specific Omega3/6 ratio for CFS.
So I wouldn't look past the need to detox in whatever method works for your body. Also exercise can help lift the depression which surely goes along with this disease. As depression goes hand in hand with anxiety.
As well I have been taking Magnesium Glycinate for my migraines. So far all of this is working good; and I have been off the ampho protocol for a while now. Still having good days. By no means am I perfect; but it is still slowly improving. Getting closer every month.
I'm guessing I wiped out a lot of the colony I had going on in my sinuses and just continue to detox and deal with the damage
** I don't recommend any of the following I am just documenting this
I was starting to have good days while on the meds, very much so. During those good days I would push myself riding bicycle and sweating a bunch in the sun. I noticed I felt MUCH better after sweating. So I kept at it; and it made a huge difference. I found the less I moved around the worse I felt; even if it was just walking. In the beginning it was terrible; took months to be able to "exercise" but once I found what I could tolerate I stuck with it. I have been off the meds for a bit now and on another protocol (from Dr. Brewer) on a specific Omega3/6 ratio for CFS.
So I wouldn't look past the need to detox in whatever method works for your body. Also exercise can help lift the depression which surely goes along with this disease. As depression goes hand in hand with anxiety.
As well I have been taking Magnesium Glycinate for my migraines. So far all of this is working good; and I have been off the ampho protocol for a while now. Still having good days. By no means am I perfect; but it is still slowly improving. Getting closer every month.
I'm guessing I wiped out a lot of the colony I had going on in my sinuses and just continue to detox and deal with the damage
Forebearance
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I am SO happy for you, @David.B! Thank you for the report!
Hi @aquariusgirl ! I started with the Nystatin and never took Ampho B because I know how sensitive I am to meds.
I haven't done the EDTA because I have tons of silver fillings. So I decided to use a himialyan salt inhaler instead, as a supplement to the protocol. Inhaled salty air is a broad-spectrum anti-microbial. I'm just doing the best I can, adapting this protocol so it works for me. Please do whatever works for YOU.
Hi @aquariusgirl ! I started with the Nystatin and never took Ampho B because I know how sensitive I am to meds.
I haven't done the EDTA because I have tons of silver fillings. So I decided to use a himialyan salt inhaler instead, as a supplement to the protocol. Inhaled salty air is a broad-spectrum anti-microbial. I'm just doing the best I can, adapting this protocol so it works for me. Please do whatever works for YOU.
Yes, I believe the mycotoxins must be *removed* via extreme cleaning of some items and trashing of others. The cleaning methods & products vary -- experts each have their own preferences - some are proprietary. The general rule is don't use toxic chemicals for clean-up.
aquariusgirl
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So I nebulised twice in one day & woke up w/a burning head sensation. Not fun. Not doing that again.
What do folks do to stop the inflammation? Lipo glut is not helping. Aspirin?
Eta:Lots of hydroxy B12 seemed to help.
What do folks do to stop the inflammation? Lipo glut is not helping. Aspirin?
Eta:Lots of hydroxy B12 seemed to help.
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Thank you so much for sharing your experience, David.
Forebearance- Not well (relatively, for me). I think I mentioned on Dec 10th I went for an awesome hike/jog, and the next day I crashed. Then I struggled with fatigue for about 5 weeks before I finally paid retail price for CSM, and within taking 4 doses of that within 24 hours, I felt amazingly better. Well.... last week I went for two hour-long vigorous walks, and crashed with fatigue again. The worrisome part is that I was still taking the CSM and charcoal, yet the fatigue wasn't starting to lift until yesterday and today. I did take a tiny amount of glutathione for the first time in ages on Saturday, not sure if that compounded it. I feel put down, and confused. I'm a little scared to exercise at this point, or use my sauna, or take methylation supplements... I'm not ever quite sure if they make me feel better or worse. To be clear- I *never* had fatigue before doing this protocol last spring, just muscle pain. So basically I feel like I'm slowly going downhill if I don't figure this out soon.
I'm planning on starting the Nystatin again soon, maybe next week, but am terrified of being fatigued all the time. I think I am trying hard to accept that like some others here, this is going to be a long, difficult treatment for me.
Forebearance- Not well (relatively, for me). I think I mentioned on Dec 10th I went for an awesome hike/jog, and the next day I crashed. Then I struggled with fatigue for about 5 weeks before I finally paid retail price for CSM, and within taking 4 doses of that within 24 hours, I felt amazingly better. Well.... last week I went for two hour-long vigorous walks, and crashed with fatigue again. The worrisome part is that I was still taking the CSM and charcoal, yet the fatigue wasn't starting to lift until yesterday and today. I did take a tiny amount of glutathione for the first time in ages on Saturday, not sure if that compounded it. I feel put down, and confused. I'm a little scared to exercise at this point, or use my sauna, or take methylation supplements... I'm not ever quite sure if they make me feel better or worse. To be clear- I *never* had fatigue before doing this protocol last spring, just muscle pain. So basically I feel like I'm slowly going downhill if I don't figure this out soon.
I'm planning on starting the Nystatin again soon, maybe next week, but am terrified of being fatigued all the time. I think I am trying hard to accept that like some others here, this is going to be a long, difficult treatment for me.
aquariusgirl
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Can anyone help me understand this ? A week of treatment w/Ampho B seems to have put a huge dent in my neuro inflammation.? Like a switch flipped or something?
Also I am sneezing like crazy ( may be unrelated) & my nose is running a lot(ditto).
Is this a common reaction?
Thanks
Also I am sneezing like crazy ( may be unrelated) & my nose is running a lot(ditto).
Is this a common reaction?
Thanks
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Forebearance
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Aw, I feel for you, Skiii.
That is great, aquariusgirl! I don't know why it happened, though.
I think I've heard people talking about nasal symptoms related to doing this protocol. I've had some, too.
That is great, aquariusgirl! I don't know why it happened, though.
I think I've heard people talking about nasal symptoms related to doing this protocol. I've had some, too.
Has anyone found this protocol to help migraines? I get these strange migraines that involve a significant prodrome and also post symptoms. Including mood symptoms, pressure behind my eye, irritability, nausea, seeing spots/zip zags. I notice during one of these episodes that the sinuses on the right side of my face seem inflamed and under pressure. If I press on the right side of my forehead it is sensitive. I have even had people tell me my face looks puffy. I also have CFS, but the headaches preceded the major CFS symptoms like PEM, by several months. Headaches are triggered often by fermented foods.