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Connecting the dots ... Is ME/CFS a complex fungal intolerance? (Introduction)

I have an interesting story to tell, and I believe a very credible new theory about ME/CFS. Well, not really a new theory, more like a reborn theory. A theory of a key role for Candida in ME/CFS. This is not the old Candida we have all experienced and heard about, the irritating skin infection, or thrush. This is a far more complex, insideous adversary, a Candida that can live anywhere in the body, in alkaline or acidic environments, under aerobic or anaerobic conditions. A Candida that can produce a key endocrine toxin found in African Sleeping Sickness in a specific location in the body. A Candida that produces that toxin when fed excess tryptophan. A Candida that can block mitochondria respiration. A Candida that can interfere with the ANS and disrupt melatonin. A Candida that can damage connective tissue and even be found in the brain where it can accumulate beta-amyloid proteins and create an Alzheimer-type condition. A Candida being revealed anew in studies conducted over the past few years. A Candida that I believe ME/CFS patients are uniquely vulnerable to due to a complex fungal intolerance that may be a consequence of being stuck in a metabolic trap. This is a new story about an old adversary.

I will try to post this over time in a series of blog posts, due to the huge volume of information that will be required. This will be the type of blog series I would have ignored in the past. There are so many exotic clues now about the cause(s) of ME/CFS, and the last thing I would want to read about would be Candida. Unless it's true.

I can hardly believe it myself, but after over 20 years of searching, thousands of hours reviewing research, hundreds of theories explored, hundreds of treatments tried, and thousands of supplements purchased, I found something that works. Not a cure, but a dramatic improvement and the reversal of a downward slide. And it is a Candida treatment that I have used before, but one that I only experimented with for a short time. This time is different, and I will try to explain why and how this theory may finally start connecting the dots about ME/CFS. And I really believe that is possible given what we know now about Candida and about ME/CFS.

The treatment I am experimenting with is simple and inexpensive, and it is only a 'proof-of-concept' for the theory. This is just a start to study of a topic that I think needs to be explored thoroughly by many patients, researchers, and clinicians. Candida is not a simple problem to treat, it was identified as a problem in CFS patients as early as 1995. I hope that with this added evidence, both from my tiny experiment and from recent research that I believe connects Candida with the metabolic trap, others will become interested and find better ways to address the problems I believe Candida is causing us.

My background: I have a very low-functioning form of ME/CFS, alternating between housebound, bed-bound, and feeling near death year after year. I've aged through this disease, with some symptoms starting as a teenager, then worsening in my early 20s, then remission until age 38, when a flu-like illness started me on the downward trajectory that led to full disability and forced early retirement at age 47. I am now in my early 60s. And I was ready to quit trying to recover. But I had tried anti-fungal treatments and fungal avoidance in the past with some success and decided to see if I could connect the dots between my fungal intolerance and current ME/CFS research. In particular I was interested in research at Stanford related to tryptophan metabolism (the metabolic trap hypothesis by Robert Pfair). I have several family members with health problems, including one with ME/CFS and one with MCAD, and we had experimented with ways to treat a metabolic trap, with one of us having some success. So I felt it might be important to connect some dots...

I believe this is a very important connection to make, between the newly understood Candida and recent ME/CFS research related to tryptophan metabolism. This includes the interesting observation that many functionally useful ME/CFS treatments may have been directly altering Candida activity and reducing its effects on multiple body systems. I believe we as a ME/CFS community have vastly underestimated the role of fungus in this disease, but thanks to the metabolic trap theory first presented in 2018, and the new Candida research, it is time to reconsider.

I hope this story can help a subset of ME/CFS patients, who may discover as I have, that their story directly supports a major role for Candida. But to make that discovery, it is important to first learn what we now know about Candida and its relationship with tryptophan...

Now on to Part 2 ...

Comments

Your theory is interesting in that it links some things that likely take part in ME symptoms. However, I don't see fungal infections as producing the rapid switching action I've observed with my ME: switching from full ME symptoms to fully healthy and energetic over the space of minutes, and just as quickly switching back. I await more details.
 
I don't see fungal infections as producing the rapid switching action I've observed with my ME: switching from full ME symptoms to fully healthy and energetic over the space of minutes, and just as quickly switching back. I await more details.
Candida is highly adaptable, its metabolism is rapid and really complicated, I would not be surprised if it can stimulate rapid energy swings in a host, but don't know what that mechanism might be, although I can speculate... Since Candida can be everywhere, including in the brain, or in the gut, this seems very possible. Food transiting through the gut can rapidly trigger mycotoxin production and thus symptoms, probably so can fungal activity in the brain and nervous system. Particularly during glucose swings, which can force Candida to shift its carbon (food) source. Another possibility would be fungal damage to neurological or metabolic energy or detox regulation. Thanks for reading and commenting!
 
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My last environmental doctor tested me with Candida antigen drops. Just one drop of the lowest dose under my tongue produced one of the worst headaches I've ever had. I didn't even want to go on with the testing so they stopped.

Years before that I also worked with his predecessor who through some mathematical figuring found my exact "shut off dose." I did work whenever I was having Candida reactions for about 2 months. Just a drop and within a few minutes I could feel myself feeling better.

However, you have to keep going back ever 6 weeks or so for adjustments to the formula and they never seemed to get it that perfect again. Plus, that doctor went on to retire. :(
 
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Kurt keep writing! of course, would love to hear your opinion of a nystatin or fluconazole round. I have had post viral ME/CFS since 2009. However, in 1990 I had acute Mono and relapsed a year later, could hardly get out of a recliner. I credit my post-mono recovery (after 5 months) to following “ CFS and the yeast connection” caveman diet, nystatin. Now that I am debilitated with ME, I have wondered if an empirical fluconazole or nystatin course could have great benefit. Have you used either of these?
 
My last environmental doctor tested me with Candida antigen drops. Just one drop of the lowest dose under my tongue produced one of the worst headaches I've ever had. I didn't even want to go on with the testing so they stopped.

Years before that I also worked with his predecessor who through some mathematical figuring found my exact "shut off dose." I did work whenever I was having Candida reactions for about 2 months. Just a drop and within a few minutes I could feel myself feeling better.

However, you have to keep going back ever 6 weeks or so for adjustments to the formula and they never seemed to get it that perfect again. Plus, that doctor went on to retire. :(
This reminds me of doctor Goldberg's treatments for CFS years ago. The treatments always worked dramatically well for a little while then stopped working. I believe this is completely consistent with candida being a primary driver of our condition. Due to its incredible adaptability. This adaptability is probably one of the reasons systemic candida has not yet been solved when it gets to end-stage and sepsis. However there is one limited treatment it cannot adapt to and I will be writing about that soon.
 
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Kurt keep writing! of course, would love to hear your opinion of a nystatin or fluconazole round. I have had post viral ME/CFS since 2009. However, in 1990 I had acute Mono and relapsed a year later, could hardly get out of a recliner. I credit my post-mono recovery (after 5 months) to following “ CFS and the yeast connection” caveman diet, nystatin. Now that I am debilitated with ME, I have wondered if an empirical fluconazole or nystatin course could have great benefit. Have you used either of these?
Yes I have used them. And many others. Pharmaceuticals help for a while but then things always get worse. Probably due to the adaptive nature of candida. Candida is a powerful opponent. It adapts to or hides from most pharmaceuticals. I have not found the final answer for treating candida yet for people in our condition, but I believe there are some very strong clues. I believe it is a particular problem for us because of a complex multi-factor fungal intolerance. Hopefully by shining a light on this aspect of the problem we might be able to make some progress collectively.
 
I've heard that Candida binds to mercury in our system...kind of the lesser of two evils that the body allows as a protective type action. When I was treating with cilantro and chlorella I did get some relief. It felt like the Candida was going away too. Have you heard of that and have you any related treatment ideas? Or does your idea relate to that?
 
I've heard that Candida binds to mercury in our system...kind of the lesser of two evils that the body allows as a protective type action. When I was treating with cilantro and chlorella I did get some relief. It felt like the Candida was going away too. Have you heard of that and have you any related treatment ideas? Or does your idea relate to that?
Yes, I've run into that, Candida can actually take in toxins, which sounds nice. Until you learn it does this to methylate the toxins, presumably to make them bio-active and use them as weapons. The gut microbiome is a war zone. Environmental fungus probably does this as well, which could be why mold plus pollution is so toxic to humans, but that's another story (which I hope to include in a later blog). Anyway, there is at least one study that shows Candida can turn elemental mercury into bioactive methyl mercury. Which is scary until you look at the levels of mercury in the environment already and remember that poison is always in the dose. I suppose it could build up in Candida colonies. All the more reason to get rid of the Candida, flush it out. Let the elemental mercury pass through us. I've also used chlorella and cilantro for that, it did seem to help. Anyway, it seems possible Candida could be a factor in making mercury dangerous to us, by methylating it. Just a thought.
 
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Pharmaceuticals help for a while but then things always get worse. Probably due to the adaptive nature of candida.

One aspect of ME is that many things work on the first try, and then quickly stop working and never work again. No guarantee that candida is involved in that.

I was thinking more about candida and the rapid switching of ME state. I still think candida doesn't fit, because if the symptoms were due to candida population, we would have a more gradual change of symptom severity, and more day-to-day variation. My ME is quite stable, aside from those rapid switchings in the early days.

At one point in trying to figure out what I had, I did try anti-candida treatments. When I first tried it, and felt much worse from it, I thought that was the expected die-off increase. However, no matter how long I took it, or how much, I still felt lousier after taking it, so I think it was an ME reaction to the treatment, rather than die-off, the same as many other treatments without antifungal properties did. I came away from that convinced that candida was not an issue for me.
 
At one point in trying to figure out what I had, I did try anti-candida treatments. When I first tried it, and felt much worse from it, I thought that was the expected die-off increase. However, no matter how long I took it, or how much, I still felt lousier after taking it, so I think it was an ME reaction to the treatment, rather than die-off, the same as many other treatments without antifungal properties did. I came away from that convinced that candida was not an issue for me.
Actually that could match vulnerability to Candida. Particularly if you try many different treatments and get the same backlash. Some people have to support detox, including metals detox, in order to beat Candida. I've had to support detox, mitochondria, and hydration status just to tolerate Candida treatment. I know one person who had to treat her Candida for five years before beating it. And that involved much rotation of treatments, including extreme diets, pharmaceuticals and natural approaches. Her fatigue went away finally. But I understand what you are saying, I've only recently started to finally make headway after years of failure, and figuring out how to address what I believe are a few key vulnerabilities that may be what predisposes us to difficulties fighting Candida. And hopefully there will be a shorter treatment than what my friend went through. Also, this tryptophol theory may only apply to a subset of ME/CFS patients, at this point I'm just trying to get the main idea organized and communicated. Treatment problems is probably a good follow-on topic though. I want to present the rest of the theory, and how it matches up with ME/CFS research. Then it should be easier to talk about treatment issues, what is working now for a small group of patients, and so on.
 
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I recently have come to the idea, that if there is an infection in ME/CFS, then it is a fungal one.

So, I would say, very interesting, and keep it up!
 
Actually that could match vulnerability to Candida. Particularly if you try many different treatments and get the same backlash. Some people have to support detox, including metals detox, in order to beat Candida. I've had to support detox, mitochondria, and hydration status just to tolerate Candida treatment. I know one person who had to treat her Candida for five years before beating it. And that involved much rotation of treatments, including extreme diets, pharmaceuticals and natural approaches. Her fatigue went away finally. But I understand what you are saying, I've only recently started to finally make headway after years of failure, and figuring out how to address what I believe are a few key vulnerabilities that may be what predisposes us to difficulties fighting Candida. And hopefully there will be a shorter treatment than what my friend went through. Also, this tryptophol theory may only apply to a subset of ME/CFS patients, at this point I'm just trying to get the main idea organized and communicated. Treatment problems is probably a good follow-on topic though. I want to present the rest of the theory, and how it matches up with ME/CFS research. Then it should be easier to talk about treatment issues, what is working now for a small group of patients, and so on.
Can you explain this tryptophan issue to me and how we know if we have it? Does taking exogenous tryptophan pose a risk? I thought we were low in it. Also, does having a normal IDO1 gene mean we're good?
 
Can you explain this tryptophan issue to me and how we know if we have it? Does taking exogenous tryptophan pose a risk? I thought we were low in it. Also, does having a normal IDO1 gene mean we're good?
The tryptophan issue here is a defect in the genes for the enzyme IDO2. The specific genes involved are listed in the 2018 paper by Robert Pfair. At one time 23andMe tested some of the genes involved, however they dropped those genes from the test several years ago. If you have a very old 23andMe test result, you might be able to figure it out. Other than that you would have to get a full genomic profile. And probably send it to Robert Pfair. I hope there will eventually be a test specific to this problem, right now it is a bit complicated to find out. If you have low functioning ME/CFS there's at least an 85% chance you have the bad genes, according to the Stanford research. So I think it is safe to just assume the problem is there for most of us.

My experience is that taking exogenous tryptophan can be bad. However I don't think all forms of tryptophan are the same. I can't explain how, but some foods seem to have more bioactive tryptophan than others. I know for myself I am very sensitive to meats that are high in tryptophan and some food such as soy-based sauces. Which are also high. Pork in particular. Once I learned how to test my tryptophan tolerance, it was a black and white observation. Particularly with pork. I can't believe after decades of CFS I had never noticed this correlation with symptoms before.

A working IDO1 gene is part of the metabolic trap, so for most of us it probably works. I do believe problems with IDO1 could be involved in a Candida problem. Since we need a well-functioning IDO1 to fight fungal infections. I don't know if lower IDO1 activity due to being stuck in the metabolic trap would make us more vulnerable to Candida it but it seems possible.
 

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