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Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 4)

This is the fourth blog in a series on my theory that a major ME/CFS pathology may be a complex fungal intolerance. If you have not read the introduction and parts 2-3, that is recommended before reading this post. This is a speculative theory and a sharing of experience, and not to be considered medical advice.

Just for a quick review, in parts 2-3, I introduced and discussed the topic of tryptophol, an alcohol produced by Candida from its metabolism of tryptophan. In part 4, I will present an experiment in self-treatment, targeting the theory that tryptophol is somehow getting into circulation and causing major ME/CFS symptoms.

An Experiment to test the Tryptophol Theory. After discovering the possible tryptophol connection between African Trypanosomiasis (Sleeping sickness) and Candida Albicans, and then discovering the chain of logic presented in parts 2-3, I started reviewing my own ME/CFS journey for clues to see if it was possible that I have a long-term problem with Candida producing tryptophol. I have had a few partial remissions over the years, so I carefully reviewed each to see if there were clues. I had to think back and sort through the different treatments tried, as well as treatments several family members had tried, and remember which ones seemed related to our partial remissions. And I was surprised to observe that every remission could be related to a treatment acting against intestinal Candida. I had never made that connection before because some of the treatments were not generally known as Candida treatments, but as I searched through the literature I found that in fact there was a possible Candida connection with every successful ME/CFS treatment I had used.

Since I had never connected those partial remissions to Candida in the past, I had never tried a comprehensive approach using all of the effective treatments together, I had never stayed with a treatment long enough to address the complexity of Candida, I had often quit a treatment due to ‘die-off’ reactions, and I had never focused exclusively on reducing the production of tryptophol. A shift in focus to tryptophol turned out to be an important missing piece to the puzzle for me. The new focus is to use a combination of treatments that together will weaken and reduce Candida levels in the small intestine, while depriving it of some of its tryptophan supply in order to reduce tryptophol production and hopefully produce functional improvements in major symptoms.

Goals of Treatment. The logical treatment goals were: 1) Reduce Candida’s ability to produce tryptophol, 2) Reduce the nutrient flow to Candida to weaken it, and 3) Reduce the Candida levels in the small intestine. These were simple goals, but addressing them successfully was complicated. There are many different perspectives in the healthcare industry about the role of Candida in chronic illness, and multiple many ways to treat Candida problems. However, by narrowing my options to only address these treatment goals, I have been able to construct an approach that is helping a lot, and I believe supports the tryptophol theory of ME/CFS. Some of these goals were easy to address, others took a lot of time to work out with much trial and error. By identifying the treatments that had produced the most improvements in the past, I found a combination that I believed would make a significant difference.

1. Reduce the tryptophan supply. This was fairly simple, we had experimented a year earlier with a low-tryptophan diet so knew it was possible. The most important part was to stop eating pork, as that is the single highest source of tryptophan in most diets. I also reduced my serving size of other meats to about half what I usually ate. One family member went farther and followed a zero-tryptophan diet, which is much more difficult. She seemed to benefit from that, but that did not seem to make a difference for me. A few months into this experiment I ate a serving of pork and definitely noticed all symptoms flaring, so I avoided pork and reduced other meat serving sizes and that seemed to help. There are other foods with relatively high levels of tryptophan (eggs, cheese, peanuts, etc.), and I was careful to use small servings with those, but meats seemed to be the major source where serving reduction or in the case of pork, avoidance, made a difference.

There is one possible issue with the tryptophan supply that may be the key to perpetuating ME/CFS and also creates a problem in reducing the tryptophan supply. As I mentioned in the prior parts of this blog, if a metabolic trap is active, there will be a regular supply of tryptophan for the Candida in the host cells it can access. Primarily this will be a problem in the small intestine. Fortunately cellular turnover can be rapid in the intestines (days to weeks). There was not much I could do to directly treat the metabolic trap except be aware that it could take time for tryptophan levels to lower inside cells in the small intestine. So patience became part of the treatment approach.

2. Reduce the nutrient flow to Candida. I focused mostly on finding the best anti-Candida diet, especially eliminating simple carbohydrates. This was also fairly easy as I have tried many anti-Candida diets before. I mostly have used ‘The Body Ecology’ diet, which allows ancient grains. In particular I added millet to my meals, at least two meals a day, as millet has antifungal properties. And that seemed to make a major difference. But you must eat more millet than other grains due to its lower calories per serving, about double the normal serving. So I often supplemented with quinoa. I have been gluten-free and sugar free and mostly fruit-free for years, with the exception of avocado and sometimes a few apple slices. I believe diet was a very important factor, although the major change I made to my existing diet was to use millet as the primary grain.

3. Reduce the Candida levels. This is probably the most important treatment goal, and another area where I had some experience and was able to identify what worked best. In the past I have used natural antimicrobials, anti-fungal enzymes, and also a fungal cell wall inhibitor. I have also used pharmaceuticals and they have helped sometimes, but often I would get worse after stopping the pharmaceuticals and it was not safe to take them long term. Candida can even develop tolerance to some pharmaceuticals. So for a potential long-term protocol I wanted to stay with natural products I knew I tolerate well.

Antimicrobials. I used oregano oil, korinje cinnamon, olive leaf extract, monolaurin, coconut oil, pao d’arco, and grapefruit seed extract. I have used these on and off for many years. The most important seems to be monolaurin. But they all help, I notice the difference when I do not take them. I only take small doses of these, mostly at night. Although I take the coconut oil with breakfast since it gives me some energy as well as the antifungal effect. There are probably many other very effective natural antifungal supplements like these, this is simply the group that I was comfortable with and knew that I would tolerate well and also knew to be effective against Candida.

Anti-fungal enzymes. I have also experimented with anti-fungal enzymes from time to time, and knew that some seemed to help. But I had never stayed with one product long enough to recognize the gains that were possible, because I followed the label instructions on the bottle, which generally talked about acute infections and using high daily doses of the product for only a few weeks. And I had tried that several times but could not tolerate the higher doses recommended, and eventually had quit the products. But maintenance instructions are also given, although I had never followed them and never continued using them long-term before due to the strong die-off experience from the higher short-term doses. This time I decided to use only the maintenance doses in order to fully test the tryptophol theory. This was because these enzymes were probably the most effective treatments I had tried in the past for short-term use.

The most important natural antifungal for this experiment turned out to be cellulase, an enzyme produced by soil-based bacteria to digest cellulose debris. Cellulase enzymes happen to destroy the Candida cell wall, as that includes some cellulose. Without these enzymes, I believe this experiment would not have worked. There are other enzymes that can break down Candida cell walls, including chitinase, and beta glucanase, but cellulase has been the easiest to find online as a supplement. I used several product brands including Candex, Candidase, and BioFase. There are several other anti-Candida enzyme product brands available that probably work just as well. I had the most success with Candidase, which is pH balanced for intestinal absorption. My daughter with ME/CFS had better success with BioFase, but she only tolerated half the suggested maintenance dose. We both could use Candex and that seemed to work almost as well as the other two products. I do not believe there is a benefit to trying to take higher doses, as this is a fungal management situation and not an attempt to eradicate all gut fungi. I do not believe that full eradication is realistic or safe to attempt given the sensitivities of ME/CFS patients.

Fungal cell wall inhibitors. The growth of Candida cells can be weakened by using fungal cell wall inhibitors. This includes chitooligosaccharides, such as chitosan, an extract from shellfish shells. Chitosan causes Candida cell walls to be thin and weak. In theory, cellulase enzymes should work better to break down Candida cell walls if chitosan is used. I have used chitosan successfully in the past, it has a very strong anti-fungal and anti-parasitic effect. I did not try to combine it with the cellulase during the experiment, but I plan to eventually add chitosan in small doses, as the combination with cellulase could create a powerful die-off.

The following are a few other treatments I follow regularly that I believe may be related to success with the anti-Candida treatments.

Supportive therapies. I believe each of these could be contributing to success in treating and recovering from the tryptophol problem. These all support the three treatment goals in a general sense.

Detox support. I used several liver detox support supplements, including a lemongrass tea (especially Red Zinger), a liver extract formula and milk thistle. I also used probiotics that can help with resistance to intestinal Candida, including Lactobacillus and Saccharomyces Boulardii. In the past I have also used soil-based organisms and would have included those but simply had none on hand.

Genetic support. This will be different for each person, I have tested my methylation genetics using 23andMe. I learned from geneticgenie.org that I need methylation support (methyl B12, B6, methylfolate, magnesium, Vit C). I believe that contributed to the success of the experiment.

Reducing total fungal load with mold avoidance. The human body has two general sources of fungal load, either from the environment through the airway and lungs, or through the digestive system. The small intestine has three times the surface area of the lungs, when you consider the full area of the avioli of the lungs and the intestinal vilii. So the majority of our fungal load could be from the digestive system, however, the lungs still can contribute significantly to our total fungal load. I believe this is an issue because environmental mold utilizes many of the same immune and detox resources as Candida. Both rely on the HLA-DR immune genetics for example. Both activate cross-reactive antibodies (IL-17). I suspect I have the HLA-DR problem identified by Ritchie Shoemaker in mold illness, so I have tried to address the lung's contributing factors to my total fungal load due to mold toxins. This has included practicing mold avoidance, paying attention to moisture and humidity and being careful to avoid moldy areas. I even relocated to a dry climate in 2007 to reduce mold exposure, which was very helpful, even life-saving. I continue to be vigilant about the airway and lung portion of total fungal load. Reducing total fungal load should improve the body’s ability to cope with the Candida die-off from the other treatments.

Nutritional support. I regularly take digestive enzymes, and am careful to include all the essential amino acids in at least one food daily. I also practice juicing vegetables, basically making my own V8 Juice daily.

Rehydration support. I use an oral rehydration formula from the W.H.O. The formula is a rice broth with salt, and is very helpful in staying hydrated. The rice broth may also help reduce gut permeability. I take the rehydration drink twice daily. There are several commercial rehydration products, including one based on the W.H.O. formula, that may also be effective. I just preferred the homebrew version.

Mitochondria support. I take small amounts of d-Ribose twice daily, and also take Goji powder and berries twice daily, which support mitochondria function.

Other support issues. Other issues I try to address include taking choline to support connective tissue, omega oils for brain health, and a few others from time to time as issues emerge.

Addressing the stress response. The stress response is a complicated topic that I believe is also essential to address in order to support the three treatment goals. The stress response is tightly intertwined with Candida management.

Research shows that Candida levels are influenced by stress levels. My experience with Candida has been that the fungus is in a continual vicious cycle with stress. High stress load seems to allow Candida to proliferate and be more active. At the same time, high Candida levels seem to worsen stress responsiveness and anxiety levels. Based on research this revolves around glucose swings from the cortisol response to adrenal activity. Candida can feed on the host glucose when glucose levels get high, and that may be a mechanism Candida utilizes, by stimulating a host adrenal response, which leads to elevated cortisol, which raises glucose. Research supports this idea that lowering stress levels helps lower Candida levels.

Stress reduction may also be important in eventually resolving the metabolic trap. I believe stress should be reduced long-term in order to avoid the perpetuation of the tryptophan increase that feeds the metabolic trap. The resolution of the metabolic trap is not well defined yet, and may depend on specific IDO2 genetics a person has. But for now my best guess is that the metabolic trap for those with the worst IDO2 genetics is only resolved as cells decay and new cells are created, and only under low-stress conditions.

There are many approaches to stress management, and I have taken several commercial courses. Every one of them has helped somewhat. Ironically, once the Candida load was starting to be reduced, within a few months of starting this experiment my stress response became much easier to manage. I found that all of the methods I had learned worked better. My anxiety levels also went down significantly, without any stress management, just from the lower Candida levels. However, the increased mental energy from the lower Candida activity has had the surprising result that I actually need the stress management methods now just as much as before. When I experience stressful situations now, I find my mind has more energy to become stressed, if I do not use these methods. So they were useful before treatment and I expect to continue using them indefinitely during recovery.

Personalizing a stress management approach. I hope to write more about stress response training in the future, it was a fairly difficult skill to learn due to the way my brain works. But I have found ways to combine breathing, meditation, self-talk, and the use of positive imagery that seemed to calm the Limbic system. I also learned to shift my inner dialogue in ways that have helped me get past some of the mental blocks I previously had due to over-focus on negative and traumatic memories.

Results of the treatment experiment. I have now used the cellulase and other treatments together for four months, from January through April, 2020. I knew this was going to work after the first few weeks, because of symptom improvements.

Improved Sleep. The first and most important change was sleeping better, sleep started to become restorative for the first time in over 20 years. I also was able to sleep naturally, without benzodiazepine. I did taper off the benzo very gradually though, and found that when I got sick with the flu virus going around this winter, I needed some benzo again to sleep. But once the symptoms resolved, I could sleep again. The sleep improvements have continued.

Improved Immune Function. I suspect the anti-candida treatments, particularly the cellulase enzymes, helped me with recovery from the winter/spring virus, because I seemed to have fewer symptoms than family members who were sick about the same time, although the symptoms did drag on for several weeks. I don’t know if this was a mild case of COVID19 or influenza, but I did have mild versions of the symptoms of COVID19. Anyway, that was one benefit, handling a difficult virus better than usual.

Improved Energy Levels. My energy levels are about double what they were before. Including both mental and physical energy. I could not have written this blog a year ago, in fact I had only been able to use a laptop computer while laying in bed for the previous year, but I am now sitting at a desktop computer writing this. I have also noticed that I can stand up a little longer than I could previously, and I have less PEM after exertion. My daughter can now walk farther than she has been able to for many years.

Improved Connective Tissues. My joints also are stronger, I get fewer backaches, and my neck seems to work better, I have some CCI type symptoms in certain head positions, and they are improved.

Reduced POTS symptoms. I had started developing a serious tachycardia problem the year prior to this experiment. I had to go on beta blockers and my activity level was significantly reduced. I was losing the ability to be upright. This has mostly reversed just in the past four months, and I have returned to the state I was in about a decade ago. I do still take a small dose of beta blockers but have missed a few doses accidentally and did not have any tachycardia.

Reduced Environmental Sensitivity. My tolerance of mold and VOCs is improved, although I still am sensitive, just not as hyper-sensitive as before. My daughter has noticed her normal sense of smell returning.

Improved Mood. I have much lower levels of depression and anxiety, and much better mood stability. I believe my limbic system is more stable. My daughter has experienced a more positive and stable mood.

Improved Muscle Tone and Density. The reversal of muscle wasting, gaining weight (which is good for me), was an unexpected bonus. I had lost a lot of weight and most of my muscle tone a year ago when I started having heart (BP and tachycardia) problems.

Restoration of Cognitive Function. I have experienced better cognitive function. I feel mentally almost like a teenager again which makes me wonder if the Candida problem started at that age. But I don't have teenage level mental energy, just a sense of cognitive vitality that reminds me of that age.

Reduced Stress Sensitivity. One wonderful outcome of this experiment has been a reduction in my hypersensitivity to stress. My anxiety levels are much lower, I am not easily startled. And I learned a lot about stress sensitivity during the process, as the reactivity to stress went down during the experiment. I now realize that the popular ideas of how to resolve difficult parts of our past don’t work well with my ME/CFS brain. I had to figure out how to put multiple modalities of therapy together in ways that worked for me. I suspect many ME/CFS patients could benefit from this same type of process, perhaps with their own combination of stress reduction therapy elements.

Improved ANS functions. Both myself and my daughter have experienced a partial normalization of our day-night cycles, and a reduction in the 'wired-but-tired' phenomenon. We have started becoming tired at night, sleeping most of the night, and feeling more alert during part of the day. This is not a complete recovery of ANS function, but a noticable improvements. We still have an afternoon slump many days. But we both had inverted day-night cycles that were very dysfunctional and that is definitely switched back to a normal schedule. I believe we are experiencing a normal release of melatonin and the melatonin receptors are unblocked by tryptophol for the first time in many years. We also are both able to tolerate more exertion than we have been able to previously, which may also be tied in to a partial normalization of ANS function.

These are only functional improvements, not remission, but the gains are across nearly all of my ME/CFS symptoms. This is a more balanced improvement than I expected, and I attribute this primarily to reducing tryptophan, using the cellulase enzymes every day at a maintenance level, and maintaining the other treatments I had been using as I described above. I estimate I have gone from about 15% functional to about 35% functional, which is a major improvement for a low-functioning ME/CFS patient in only four months. My daughter has been following this same approach and has experienced similar improvements, but at a slower pace than my own. Her gains so far are from about 10% functional to about 15-20% functional. The speed of improvement appears to have leveled off for both of us, but the gains are stable.

Some Symptoms Were Not Much Improved. While most of my symptoms are improved with this experiment, my orthostatic intolerance is mostly the same. I do have a little better endurance for standing up, I have not tracked that but it seems like I get an extra few minutes each day beyond normal. But this is one area where I was disappointed that the improvement has been so small.

Conclusions from the Experiment. The experiment seems to confirm the gist of the complex fungal intolerance theory. Overall, I am still disabled by ME/CFS, but my quality of life is much improved. It is nice to have restorative sleep again and have some of my mental faculties back. Although I do notice that my memory seems damaged, and I can tell there are some hard limits still to my activity capacity, perhaps the tryptophol exposure for so many years caused some nerve and tissue damage. I expect recovery to be slow given the damage, and also given the slow rate of cellular turnover in many important organ systems that may also be stuck in a metabolic trap, such as the liver and lungs. Even with the right treatments, if this metabolic trap and Candida theory of ME/CFS is correct, this condition will probably take a long time to heal. Therefore, my ongoing focus will be on how to maintain the improvements.

Maintenance of the improvements. I’m still working on building a long-term maintenance program to sustain the treatment goals. I believe this requires maintaining the better stress response, managing and maybe rotating anti-Candida treatments, maintaining the changes to diet, and developing a life balance that will prioritize maintaining wellness. I have also started to experiment with a gradual exercise program and will continue that as endurance allows.

The overall objective I am pursuing is to hold onto the gains. That is an ambitious goal given the track-record of so many ME/CFS treatments that work for a while then stop working. But I believe some treatment failures could be due to the adaptive nature of Candida, and if this theory is correct, a long-term maintenance program should allow the improvements to become permanent. Time will tell.

Now on to Part 5 ...

Comments

If it's in the small intestines would this be similar to SIBO, but with fungus instead?
 
If it's in the small intestines would this be similar to SIBO, but with fungus instead?
Yes, SIFO. But in theory very complicated due to the tryptophol problem and how it can disrupt the autonomic nervous system.
 
interesting
but totally uneducated guess - wouldn't more people then see they have intolerance to sugars, junk food?
i personally dont notice it so much,...until I ruined my gut with too much antibiotics, then i noticed classical yeast flares and they made ME flares too.

But overall i didnt hear people saying much that their ME is overly sensitive to sugars? !
it seems to vary what food types people do better with?

I mean most seriously sick people say food cant make them better anyway, as for the popular diets.
 
interesting
but totally uneducated guess - wouldn't more people then see they have intolerance to sugars, junk food?
i personally dont notice it so much,...until I ruined my gut with too much antibiotics, then i noticed classical yeast flares and they made ME flares too.

But overall i didnt hear people saying much that their ME is overly sensitive to sugars? !
it seems to vary what food types people do better with?

I mean most seriously sick people say food cant make them better anyway, as for the popular diets.
I can only answer for myself, but my ME is definitely heavily yeast-related - I have done several tests and multiple rounds of anti-fungals over 11 years. And although I eat a strict Paleo-Ketogenic diet, which definitely helps to keep me at a basic level of functioning, I wouldn't say I have 'sugar intolerance' - that's to say, sugar (on the rare occasion when I have it) doesn't cause an immediate, identifiable reaction. But I know if I kept eating it (and all the other carby stuff I've cut out) I would gradually get worse.

I know this because I tried a meat/protein/fat only diet for 7 weeks (one of Dr Myhill's less great ideas!). The idea was to radically alter the gut flora by eating stuff which couldn't be fermented. Not only was this pretty horrible eating-wise, but I could feel myself getting steadily worse. Eventually it seemed that the high levels of protein were being converted to glucose and flaring the Candida - hence back to square one :(
 
Some good comments about sugar:
interesting
but totally uneducated guess - wouldn't more people then see they have intolerance to sugars, junk food?
i personally dont notice it so much,...until I ruined my gut with too much antibiotics, then i noticed classical yeast flares and they made ME flares too.

But overall i didnt hear people saying much that their ME is overly sensitive to sugars? !
it seems to vary what food types people do better with?
This is more complicated than just the sugar issue but you raise a good question. Some people seem to have not passed the threshold where sugar causes their Candida to create the more potent mycotoxins. I think there are some variables here that will take a lot of research to figure out. But we all have Candida inside us and if it gets in the small intestine, even at normal levels, it will probably produce tryptophol if given tryptophan in the diet or in cells in the metabolic trap. There may be variations in the microbiome, and even may be variations in Candida Albicans strains that create differences between patients. Also, we may have not had leaky gut prior to ME/CFS, or we may have been able to process tryptophol at the lower levels and the levels just may have spiked once we got into the metabolic trap. Also, this situation may only apply to a subset. But the result of my experiment was undeniable and I am a really sensitive person, being on benzodiazapine I had a kind of litmus test for whether a treatment was working or not. Getting off benzo this easily is unprecedented for me. I just see the pattern here as pointing undeniably to a connection between ME/CFS and tryptophol. I'll explain more in later blogs, how I worked through the chain of studies that led to this conclusion. Thanks for your comment!
 
Have you shown any of this to Dr. Phair (@HTester)? It's very interesting and may lend something to his research.

Also do you have issues with Saccharomyces cerevisiae (beer yeast also used in making bread). Somethings I have read said it also can make tryptophol but to be honest I don't understand the mechanism.

I cannot eat yeast. It's one of my worst allergies. I wonder if other yeasts also make this as vinegar even in the air starts to swell my eyes and throat.

Judee
 
I had also found this article a while back while talking to another member about tryptophan. It says:

"Bacteria such as Escherichia coli (a friendly inhabitant of our gut) need amino acids to survive—because, like us, they need to build proteins. One of the amino acids they need is tryptophan.
If tryptophan is available in the environment, E. coli will take it up and use it to build proteins. However, E. coli can also make their own tryptophan using enzymes that are encoded by five genes. These five genes are located next to each other in what is called the trp operon.
"

Maybe it doesn't affect the body's total amount of tryptophan but I found it interesting because it sounds like other bacteria do that too. Have you heard of that with Candida? Making it's own tryptophan, I mean.

Edit: I felt better when I first started to use Mutaflor. Maybe it was using up some of the tryptophan in my gut. It also significantly improved my blood pressure numbers.
 
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My candida IgA was high when tested a few years back. I got ringworm on my hand recently from seemingly no where, i have excess gas recently.

At one point I recall kimchi being very helpful and I had no idea why. When trying candida supplements in the past, I don't remember there being any effect.

Would a ketogenic diet not be ideal?

EDIT: I see Bacillus Coagulans supposedly eat tryptophan.
 
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This is more complicated than just the sugar issue but you raise a good question. Some people seem to have not passed the threshold where sugar causes their Candida to create the more potent mycotoxins.
I have reduced the very extended wind I stupidly caused myself - presumably coming from candida - now within in 10 days or so. These have been the interventions (the first three in purpose of that, the last two may play a role).
  • diary: kefir, yogurt, cheese, prebiotic drink
  • sauerkraut
  • no or strongly restricting caffeine
  • low manganese diet (anyway)
  • no meat (? by accident)
  • a new supp, newly with Ka: Mg, Ka, B6, B12 (? by accident), rather only in sips
A problem is of course - for me at least - the carving from low/no carbs. My solution for now is - a bit surprising - chocolate. Although it obviously feeds candida, it´s on the longer run nevertheless not hindering the diminishing of wind and athletic food under the other conditions (athletic food additionally with topically vinegar only). It seems but that it is dose dependent, luckily I have no problem to skip any carbs for a day or so (though the diary contains some sugars). For meat, if it is important, I would suspect the DNA as it is broken up by certain enzymes (but I havn´t already delved into this issue).

@drob31 Kimchi is as well as sauerkraut and some of the diaries a fermented product. Some say, no fermented product for candida, others say yes. I have only read about kimchi though (I even don´t know what it is).
 
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Aye, yi yi.....I thnk stomach problems and diets go hand in hand with this ilness. I also don't think our chances of getting to the bottom of the problem are likely.

It seems that we have so many things wrong; one may manifest as a stomch ache, another as an upset stomach, infections,,,,you name it we have it or will have it. I find that meds put a lot of weight on me, and when I'm off them I weigh less than I did on my wedding day. It's just a constant yo-yo and I feel very sorry for anyone who doesn't have a large closet. I also think that women tend to feel weight gain more around permineopause and menopause. Everyone I know has a collection of outfits in different sizes and are reluctant to let go of them. I'm sure this latest run will see me running up on the heavier side again.

Now let me tell you that I eat a good diet....lots of salads with everythign in them), veggies, sweet potatoes and little meat. I couldn't believe how I blew up on that one, but it looks like I'll have to try to it again. Darn! Just when things seemed to at least look normal, this happened again! I'm not looking for pity, just wondering how many women are also living this way? Also, I wonder if antibiotics play a role in the weight gain we so often experience? Lots of questions to be answerered, we're simply waiting for the right person.
Thanks for letting me drop is...Yours, Lenora.
 
Have you shown any of this to Dr. Phair (@HTester)? It's very interesting and may lend something to his research.

Also do you have issues with Saccharomyces cerevisiae (beer yeast also used in making bread). Somethings I have read said it also can make tryptophol but to be honest I don't understand the mechanism.
Dr Phair is aware of my theory, we discussed it privately several months ago. In fact he helped me connect a few dots, the possibility that melatonin could theoretically be blocked by tryptophol in the pineal gland.

I avoid brewer's yeast due to the general fungal issues, so don't know if I am sensitive due to tryptophol, but that makes sense. Some wines also can have tryptophol.
I had also found this article a while back while talking to another member about tryptophan. It says:

"Bacteria such as Escherichia coli (a friendly inhabitant of our gut) need amino acids to survive—because, like us, they need to build proteins. One of the amino acids they need is tryptophan.
If tryptophan is available in the environment, E. coli will take it up and use it to build proteins. However, E. coli can also make their own tryptophan using enzymes that are encoded by five genes. These five genes are located next to each other in what is called the trp operon.
"
...
Edit: I felt better when I first started to use Mutaflor. Maybe it was using up some of the tryptophan in my gut. It also significantly improved my blood pressure numbers.
That's interesting! My BP also seems to be involved in the Candida/Tryptophol problem. Which I assume is due to ANS disruption.
At one point I recall kimchi being very helpful and I had no idea why. When trying candida supplements in the past, I don't remember there being any effect.
Would a ketogenic diet not be ideal?
EDIT: I see Bacillus Coagulans supposedly eat tryptophan.
Kimchi is full of probiotics, maybe there are some soil-based probiotics that produce cellulase enzymes, that would make sense as Kimchi is known to help control Candida. The more I look into treatments that work in ME/CFS, the more connections I am finding to Candida management.

But I am not optomistic about a keto diet, that might look like a good choice due to low simple carbs, but Candida can use multiple energy sources, including ketones. And more meat means more tryptophan. I suspect keto is contraindicated for a candida tryptophol problem. I tried the Atkins keto diet once years ago before I had a diagnosis and it felt good for a day or two but then I felt awful, it did not help anything after the few good days.
...These have been the interventions (the first two in purpose of that, the last two may play a role).
  • diary: kefir, yogurt, cheese, prebiotic drink
  • sauerkraut
  • no meat (? by accident)
  • a new supp, newly with Ka: Mg, Ka, B6, B12 (? by accident), rather only in sips
A problem is of course - for me at least - the carving from low/no carbs. My solution for now is - a bit surprising - chocolate. Although it obviously feeds candida...
You seem to have found a combination that matches very well with this theory. Also, B12 is actually a fungicide for Candida, I plan to include a reference study for that in my next blog post. I also tolerate a little chocolate, I use raw cacao for the antioxidants, but I always supplement with lysine whenever I take cacao, to compensate for the arginine.
 
I find that meds put a lot of weight on me, and when I'm off them I weigh less than I did on my wedding day. It's just a constant yo-yo ..... I eat a good diet....lots of salads with everythign in them), veggies, sweet potatoes and little meat. I couldn't believe how I blew up on that one, but it looks like I'll have to try to it again.
Sweet potatoes may be lower calorie than white potatoes, but they are still are fairly high in starch so not good for an anti-Candida diet. I have had good success with 'The Body Ecology Diet', and have been on that for over a decade now. You mention weight gain and that's a good topic that I don't address much because I tend to lose weight more easily than gaining it. However, my weight has normalized on this low-tryptophan anti-Candida diet with the cellulase enzymes. Weight gain and loss interacts with the nervous system, both the ANS and SNS play a role, and given that tryptophol interferes with ANS function, I would think this type of treatment approach could restore a person's normal baseline weight. Then in theory you would go back to pre-ME/CFS weight control issues without the imbalances from the tryptophol.
 
Well, it looks like here I go again. No, yo-yoing diet wise isn't/can't be good for anyone. I still think the hormonal changes women go through leave us open for problems in our mid-late years. My husband (not a good choice b/c of his weight) is exactly the same as the day we married. Most people aren't like him...he has muscle, everything. He also has one bad knee:). But thankfully, that's it.

What about food hang-ups? Right now I'm on this craziness with soup &, of all things, saltine crackers. I can't have soup b/c of the salt content, that leaves me with the saltines. Why is that? It will all be over in 2 wks. or so,
but what brings it on to start with?

Also, you should know that I'm 73 yrs. of age and I've tried more treatments than can even be thought of. I'm sure you don't get many people my age b/c we're now tied up with just the facts of life health wise...meaning joints, heart, etc.

You've been most diligent about posting this info & I thank you. I know it isn't easy when you're faced with so much push-back. I don't mean to sound like that, but when you're dealing with two separate, severe diagnoses within 3 mos. of each other, it's tough going. I do think the younger one should take advantage of what you've learned...and if you have any words of wisdom for me, I'm always listening. Thank-you. Yours, Lenora
 
You seem to have found a combination that matches very well with this theory. Also, B12 is actually a fungicide for Candida, I plan to include a study for that in my next blog post. I also tolerate a little chocolate, I use raw cacao for the antioxidants, but I always supplement with lysine whenever I take cacao, to compensate for the arginine.
Interesting with the lysine. I had good effects from that, so will look at this again!

I added two points I forgot: no / restricitng caffeine and low manganese.
I still need to get a feeling for the procedure. Maybe the approach will turn out to be restricted in its success, but I don´t think so. No mistakes though! It probably will be a somewhat longer process, despite an initial good success. However, my impression is that the candida is handled by the body, and this might be pretty hopeful. And maybe the manganese thing is important here (for different reasons).
 
Some good comments about sugar:

This is more complicated than just the sugar issue but you raise a good question. Some people seem to have not passed the threshold where sugar causes their Candida to create the more potent mycotoxins. I think there are some variables here that will take a lot of research to figure out. But we all have Candida inside us and if it gets in the small intestine, even at normal levels, it will probably produce tryptophol if given tryptophan in the diet or in cells in the metabolic trap. There may be variations in the microbiome, and even may be variations in Candida Albicans strains that create differences between patients. Also, we may have not had leaky gut prior to ME/CFS, or we may have been able to process tryptophol at the lower levels and the levels just may have spiked once we got into the metabolic trap. Also, this situation may only apply to a subset. But the result of my experiment was undeniable and I am a really sensitive person, being on benzodiazapine I had a kind of litmus test for whether a treatment was working or not. Getting off benzo this easily is unprecedented for me. I just see the pattern here as pointing undeniably to a connection between ME/CFS and tryptophol. I'll explain more in later blogs, how I worked through the chain of studies that led to this conclusion. Thanks for your comment!
very interesting. For me personally ME is just smaller part of illness, my POTS and now Sjogren's sicca dominate as problems , and some unspecificed encephalopathy that has ME features but is not only ME, i have broader symptoms seen in encephalitis . It all responds to gut treatments, IVIG, vitamin D...
Seems like ME is some part of brain (arcuate cingulate cortex?! ) inflammation, again just based on n=1, when i take various essential oils sometimes I even managed to shut off ME completely but other brain areas stay inflammed. Or opposite.
But what makes me confused is so many people have SIBO and yet not so big CNS disease, who it hits my brain and not theirs...

Benzo makes my POTS worse it seems to me, I had severe POTS attacks under them which i never have.

how do you think is the right way to handle candida? or SIBO/SIFO?

is it just consequence of low bowels movement from SFN in some?
I met quite a few people w POTS who only later developed ME/severe fatigue, not in beginning of POTS.
seems it took some time for their microbiome shift become bad enough?
Just another guess...
 
Hi......I've been following this off and on. At age 73 with having had this for at least 34 yrs. or more, I'd just like to say that I think this is a combo of many different illnesses. I do think the body just gives up....the major common thing among us, and will either alleviate on its own or will stay ill for a long, long time to come. A lot of us have concurrent conditions....how do they play into this? I hope I'm alive when they finally figure it out; yes, I know it's too late for me to have relief but, boy, would it give me a shot in the arm to see others have it. Thanks for all your hard work in trying to figure this out....we need as much help as possible. Yours, Lenora (I do this b/c I want to have more than dropping off the earth when closing, and thanking people.)
 
Really interesting! So which proteins are best to eat on this diet? I would love to hear more about what meals would look like on a typical day
 
I had also found this article a while back while talking to another member about tryptophan. It says:

"Bacteria such as Escherichia coli (a friendly inhabitant of our gut) need amino acids to survive—because, like us, they need to build proteins. One of the amino acids they need is tryptophan.
If tryptophan is available in the environment, E. coli will take it up and use it to build proteins. However, E. coli can also make their own tryptophan using enzymes that are encoded by five genes. These five genes are located next to each other in what is called the trp operon.
"

Maybe it doesn't affect the body's total amount of tryptophan but I found it interesting because it sounds like other bacteria do that too. Have you heard of that with Candida? Making it's own tryptophan, I mean.

Edit: I felt better when I first started to use Mutaflor. Maybe it was using up some of the tryptophan in my gut. It also significantly improved my blood pressure numbers.
One of my 'kept in a box' curiosities is why I crave turkey carcasses. Thanksgiving is a great time because it's so easy to get free carcasses. And it's not just making broth, it's the facia and sinews. I love to volunteer at Meals on Wheels for Thanksgiving to take a haul of carcasses.
 
Well, Iknovate, that's a really good reason for volunteering...removing some of the trash, too. Turkey necks or wings are also good & cheap for making a soup base for turkey. It's one of the better buys in the grocery world today...and it's even edible. There was a time when turkeys were far less than enjoyable.

You know it's almost as if I've give up on trying to balance different things in the body, such as trytophan. This January hospital visit with the Autoimmune Encephalitis has just left me wondering what to do...with everything. One Dr. tells me I still have it; another says it went with the antibiotics. I'll wait and see my own neurologist....I trust his expertise most. In the meantime, I'll have to try to keep myself alive. Electrolytes and that balancing act, you know. So respect your bodies, even if you think they're broken. They can always snap to get your attention. Be healthy!! Yours, Lenora.
 
Dr Phair is aware of my theory, we discussed it privately several months ago. In fact he helped me connect a few dots, the possibility that melatonin could theoretically be blocked by tryptophol in the pineal gland.

I avoid brewer's yeast due to the general fungal issues, so don't know if I am sensitive due to tryptophol, but that makes sense. Some wines also can have tryptophol.


So is tryptophol bad ? Because it's a metabolite of Disulfiram
 
So is tryptophol bad ? Because it's a metabolite of Disulfiram
I can be bad if there is more than a trace quantity. Tryptophol is the active toxin in African Sleeping Sickness. And I believe it creates problems in ME/CFS as well, if there are high enough levels. We should not have much tryptophol in us, but may have enough to block melatonin, due to tryptophan processing issues.
 
@kurt ...I suspect an issue with copper dysregulation. Wonder if that ties into the fungal issue?
I would not be surprised. Candida is so complex, iron status is also important. And apparently the IDO2 gene is also important in fungal immunity. So we have that working against us.
 

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