@seamyb The exact opposite is true. So it's possible that you may indeed have had a candida or some sort of fungal infection.
https://www.sciencedirect.com/science/article/pii/S1081120621008590
Just a few sprays of a home-made Dr Brewer antifungal nasal spray for nasal mold triggered significant PEM
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https://www.sciencedirect.com/science/article/pii/S1081120621008590
Daffodil
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first time I took B12, probably 30 some years ago, I had a few-hour remission. I was jumping up and down, so happy but it did not last.
now, after 32 yrs of , well, you guys know what, I responded dramatically, for about 6 weeks, to Ketoconazole.
Despite 30 yrs of being told it was NOT fungus by every Uber expensive specialist I saw.
Being told that I would love itraconazole, I excitedly got on that, only to develop a rash. so I stopped. I am now trying fluconazole and modifying diet.
Thinking of digging up long packed away nasal spray supplies from when I tried Brewer protocol 10? yrs ago. I stopped because the worsening scared me. Was I further damaging the sinus Microbiome? I did not know. Also, the worsening came on only after about a week of doing it....so I was not sure if it was die off or what.
Whaddya think of that
How funny would it be, if after 32 yrs of unadulterated hell and an entire life destroyed, it ended up being fungus all along? The first thing my first doc thought of? lol (It was never followed up on because I guess he did not know what die off was and the diet made me so much worse, he got worried and made me stop)
now, after 32 yrs of , well, you guys know what, I responded dramatically, for about 6 weeks, to Ketoconazole.
Despite 30 yrs of being told it was NOT fungus by every Uber expensive specialist I saw.
Being told that I would love itraconazole, I excitedly got on that, only to develop a rash. so I stopped. I am now trying fluconazole and modifying diet.
Thinking of digging up long packed away nasal spray supplies from when I tried Brewer protocol 10? yrs ago. I stopped because the worsening scared me. Was I further damaging the sinus Microbiome? I did not know. Also, the worsening came on only after about a week of doing it....so I was not sure if it was die off or what.
Whaddya think of that
How funny would it be, if after 32 yrs of unadulterated hell and an entire life destroyed, it ended up being fungus all along? The first thing my first doc thought of? lol (It was never followed up on because I guess he did not know what die off was and the diet made me so much worse, he got worried and made me stop)
Daffodil
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By the way, I don't think they have any idea about the mycobiome yet. There are tons of different types of fungi in there and many do NOT come out in poop. If I had to guess, I would guess I have systemic malessezia (which, by the way, shows up in pancreatic cancer too)
:-/
:-/
One thing about treatments for ME: they might not be working the way they work for other people. It might be an effective antifungal, but maybe its antifungal effect isn't affecting your ME, but some molecular product of its breakdown somewhere in the body is affecting your ME. The biological effects of molecules is not necessarily simple.
So, if one antifungal had a dramatic effect, and several others had no effect, you might drop "antifungal effect" from your list of what provided the benefit.
Daffodil
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yes you are right because I also had explosive energy for a week once on valcyte ...yet it did nothing else while on it for years after. you are so right.
Daffodil
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@Wishful one thing I will say, though, is that this time, my brain fog was improved and other treatments (except FMT) did not touch that. That is severe.
well actually 2 things helped brain fog in the past: B12 but only for 2 hrs, the first time I took it. and it was totally gone while I was on Rocephin (about 10 days). It was moderately affected in a positive way on Xifaxan too, for about 10 days. But Rocephin can affect Glutamate uptake too....in the brain
well actually 2 things helped brain fog in the past: B12 but only for 2 hrs, the first time I took it. and it was totally gone while I was on Rocephin (about 10 days). It was moderately affected in a positive way on Xifaxan too, for about 10 days. But Rocephin can affect Glutamate uptake too....in the brain
Those "works for one or two doses, then never works again" are wonderful, because they show you that you can get better ... but also heartbreaking when you realize it was only a brief respite. It's not very useful for clinical science, since it's not predictable or repeatable. I think it's very useful for theoretical science, since temporary remission show that it's not permanent degradation or a slow process, which at least narrows down the possibilities for theories.
You may be interested in this small, but somewhat intriguing study.
A case report of only four patients, none of whom had ME/CFS, but "a history of significant (sometimes severe) and repetitive inflammatory reactions including respiratory symptoms, joint pain, irritable bowel symptoms, muscular pain and enervation." Other symptoms are listed as well, including 'mental fatigue'.
The only time these patients suffered, was when the food product or products contained 'citric acid'. Even if the food was organic, but citric acid was used as a preservative. Citric acid is most often made from aspergillus niger, a mold.
They cut out all and anything that listed it as an ingredient, and all got better.
Don't want folks falling into another rabbit hole, but it just might help?
https://pmc.ncbi.nlm.nih.gov/articles/PMC6097542/
Daffodil
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Thank you. I will keep this in mind.
I have decided to see yet another doctor, which I swore I would never do, but this time, a local one to keep costs way down, and I went in JUST to investigate fungus. Lol and behold, he says I should do 2 weeks of liposomal glutathione before doing the testing. In the FB fungus groups, everyone seems to know that this can "open up detox pathways" ?? and turn a test positive for fungus. For whatever reason, no one around the planet ever told me this before. what the actual fk.
So the glutathione has strangely made me even worse. So I guess I will see what happens now. I am so brain dead now, I can barely do the testing properly and keep having to order extra kits.
I am thinking that fungus is going to turn out to be important, and I am very late to the game. Another very strange development: for well over a decade, after having experimented by taking toxic IV Vistide, my kidney function was below normal. eGFR in the low 60's. Always. Now, after having been on Ketoconazole and fluconazole, a recent test showed my kidney function returning to normal. wtf??? That did not happen even with FMT.
and itraconazole works on pancreatic cancer too.
Maybe I have fungus in all of my organs cuz it can be systemic. ??
Thanks for reading.
southwestforests
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Which is a thing I wonder.
Actually, am confident of.
Can't seem to get what is available here in the way of health providers interested in the concept.
And my SSD income doesn't allow spending money to go find people and go try things.
(tangent - where are those people coworkers talked about who got rich off SSD? Been on disability since 2008 and haven't encountered a one of them)
Daffodil
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perhaps ordering meds from overseas....if you want to experiment and want to risk it. I know someone who might know the best places to order. Just make sure you get regular bloodwork while you do it
one practitioner I spoke to online, with a lot of history working with autistic patients, suggested the idea of systemic fungus to me, which could explain why I did not respond much to Nystatin, which acts only in the gut I think.
Nasal passages and mouth will turn out to be almost as important as the rest of the GI tract, since that is where foreign bodies go in. Maybe more so, who knows. That is closer to the brain, too
Anyway, they are finding that the brain has its own microbiome now too....
one practitioner I spoke to online, with a lot of history working with autistic patients, suggested the idea of systemic fungus to me, which could explain why I did not respond much to Nystatin, which acts only in the gut I think.
Nasal passages and mouth will turn out to be almost as important as the rest of the GI tract, since that is where foreign bodies go in. Maybe more so, who knows. That is closer to the brain, too
Anyway, they are finding that the brain has its own microbiome now too....
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southwestforests
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There's the thing, my body, my paternal grandfather, my Dad's sister, all have a history of occasionally odd responses to medications.
Daffodil
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@southwestforests
there is one fellow who beat fungus by totally clean living, clean diet, and supplements I think. detox saunas and a bunch of detox things. took time but he did it, he said. maybe there is a way? I could connect you if you like.
am short of money myself but still have a little determination left. not much. lots and lots of body damage by now, but will give it a couple of years more of fighting lol
there is one fellow who beat fungus by totally clean living, clean diet, and supplements I think. detox saunas and a bunch of detox things. took time but he did it, he said. maybe there is a way? I could connect you if you like.
am short of money myself but still have a little determination left. not much. lots and lots of body damage by now, but will give it a couple of years more of fighting lol
southwestforests
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Hmm. First show me verifiable documentation that they are not some kind of obsessively hyperactive activist who ignores the boundaries of your communication channels and constantly pressures you to DO MORE! DO MORE! DO MORE! DO MORE! DO MORE! DO MORE!
After encountering a few of those I have judged and condemned everyone as guilty until proven innocent, and they are going to have to prove themselves innocent in their own time on their own dime without bothering me even once.
Daffodil
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lol I can relate.
aquariusgirl
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who was the researcher ....who talked about fungus in autistic patients. ...PM me if you prefer. TNx @Daffodil
Daffodil
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I Pm'd. there are cases of almost total resolution of autism, with antifungals. one mom wrote a book about her son