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Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 6)

This is part 6 in a series on the theory that ME/CFS involves a complex fungal intolerance. If you have not read the introduction and parts 2-5 which discusses the theory and treatment experiment, that is recommended before reading this post. This is a summary of the treatments used in the experiment to test the tryptophol theory described in part 4. Again, this is not advice, just a list to think about if you are considering your own experiment with Candida self-treatment. Also, if a person is highly reactive, such as with mast cell disorders, they should probably use extreme caution dealing with Candida, and work with a competent healthcare provider.

This post is an attempt to create a simple explanation of the treatment approach my daughter and I are following. This will be a high-level list of categories of treatments. There are multiple ways to address most of these items. I believe this is a reasonable general model of how I am approaching candida that may be useful for multiple conditions, not just ME/CFS. I've received positive feedback from people trying this approach, and most are already doing many of these things and just needed to add one or two items.

First a quick review. Prior to the experiment described in part 4, I had tried many Candida programs over the years, many supplement combos, and nothing really worked long-term, although some parts of some treatments worked some of the time. I noticed that many treatments for ME/CFS and related conditions are actually addressing Candida, as well the intended pathologies. There are advocates for each of these items as a treatment for various conditions, and every time I tried one I was happy to experience a little improvement but also sad the item was obviously not enough to create any major gains. Over the course of several years I experimented with these and eventually found the necessary combination by focusing on tryptophol reduction. To do this I had to address the Candida from several directions at once. I don't know which of these was most important, they all seemed to matter, and the major improvements do not seem to happen for myself or my daughter unless we do all of these.

These are all natural treatments. I've used the pharmaceuticals before but they are not safe long-term and Candida is a long-term problem so I've tried to stay with low doses of natural products. Sometimes I rotate natural products, and there are a few I only use occasionally when I feel well because they cause strong die-off reactions. This is something I think everyone has to learn for themselves because no two people react the same to these types of treatments. This is why it is important to use small trial doses at first for every new treatment, even stress reduction meditations; any treatment can backfire. However, I found that over time I became more and more tolerant to all of the treatments and even less reactive to foods, noise, and general life stressors.

Here is a brief summary of the treatment approach we are following:
  1. A good diet, there are many anti-Candida diets. I use one called 'the body ecology diet' although I don't use that diet’s recommended fermented foods very often anymore. The basics of most of these diets include no simple carbs, low fruit, only ancient grains, legumes, limited meat portions, and only fermented dairy to avoid lactose (yoghurt or keifer often work). Also, part of the diet is to ensure good nutrition is absorbed, so we use green drinks, protein smoothies, and non-reactive foods that work well for each person. We also take goat milk whey and goat milk protein powders most days for the nutrients. As a Candida problem often involves poor nutrient absorption over many years, diet seems very important in reversing this complex pathology.
  2. Reduce tryptophan intake, because that feeds Candida and supports the production of a nasty mycotoxin (tryptophol) that can disrupt melatonin and the nervous system. Mostly this was to cut meat servings (about half) and avoid pork entirely (sky-high in tryptophan).
  3. Reduce stress levels to level out blood glucose. I took multiple courses and learned how to use meditations for stress reduction (very helpful). I went through professional guided emotional processing (moderately helpful), changed my life priorities and expectations to be able to practice acceptance (helpful), attempted brain rewiring (not sure that helped much), and both my daughter and I listened to ASMR soundtracks to try to teach our brains to relax (this has been very helpful). We both had to stop being type-A personalities, which was a difficult adjustment at first, but eventually has been a bit of a relief.
  4. Take natural antimicrobials like olive leaf extract, grapefruit seed extract and oregano oil, and a few others from time to time. This may weaken Candida but the goal is primarily to lower viral, bacterial and parasite load, and hopefully lower the overall load on the immune system so it can better fight Candida.
  5. Use a variety of mild natural antifungals daily, including coconut oil, Korintje cinnamon, pau d'arco, and sometimes a few others. Others may include chitosan and sometimes SF722.
  6. Take a strong antifungal once or twice most days, except when sick or when we need a break from the detox. This is usually a product containing cellulase enzyme (Candex, Candidase, or BioFase are my favorites). This is the only supplement we have found that always works against Candida, it breaks down the Candida cell wall. It also breaks down Candida biofilms.
  7. Take a probiotic daily. Usually a good quality blend that includes Lactobacillus (Which helps control Candida).
  8. Detox support during the Candida die-off. This is usually not a problem for us now that we have the entire treatment approach working, but in the past when die-off load became noticable, we usually took extra liver support supplements (milk thistle, etc), a Red Zinger tea (lemon grass), or extra B-vitamins (B6 and sometimes Niacin). Also, skipping doses or reducing the amount of strong antifungals was important during extended die-off reactions.
  9. Reduction of fungal load through avoidance of environmental and dietary mycotoxin exposure. Mold is its own separate pathology (sick building syndrome) and I don't want to get into that here. But there is a lot of overlap. Based on my experience, I believe toxic mold can be a trigger for opportunistic Candida and tryptophol production due to its ability to overload and/or depress fungal immunity. But the problem is not just environmental molds. Avoiding or significantly reducing eating foods that are known to have high mold levels also makes sense when you are trying to control total fungal load.
  10. Rehydration support, for low blood volume. We use the WHO rice broth rehydration recipe and take that twice daily.
  11. Mitochondria support, we use d-Ribose and goji berries daily. There are probably other approaches to supporting the mitochondria that would also be helpful.
  12. Support any other contributing pathologies including addressing genetic mutations that can weaken Candida detox. In our case, my daughter and I take supplements to support our methylation due to genetic testing showing weak folate metabolism (MTHFR). We also take liver support supplements (not every day but when needed) such as milk thistle and lemon grass tea, things like that. Also, we both take digestive enzymes with every meal.
I know this looks like a lot of work. For low-functioning or severe patients who do not have much energy and lack good caregiver support, this type of treatment approach may be difficult to accomplish. But these can be long-term goals. Addressing these types of goals takes time to figure out. Also, these are just categories of treatments, each individual needs to find what works for them.

This might not be the best list for everyone, but I believe it is a reasonable model that shows low-functioning patients can have improvements. These improvements have required many changes and we continue to learn as we go. I believe beating Candida requires adopting a comprehensive anti-fungal lifestyle.

This experience has caused a major transformation for both my daughter and myself. I believe the fact that multiple low-functioning ME/CFS patients have experienced improved quality of life from taking a comprehensive approach to Candida is a clue about the nature of this disease. A clue that should be evaluated carefully. I hope that by compiling and sharing this information we can shorten the timeline of trial-and-error for other patients. For patients who recognize this pattern of intestinal Candida in their own health issues.


Now on to Part 7 ...

Comments

Thanks for this Kurt. Very helpful. Can I ask - have you tried Cistus tea? I’ve heard it can be effective against candida. I’ve been trying it for a week or so, but now feel worse (die off?) so going to have a few days break.
 
Thanks for this Kurt. Very helpful. Can I ask - have you tried Cistus tea? I’ve heard it can be effective against candida. I’ve been trying it for a week or so, but now feel worse (die off?) so going to have a few days break.

I would be careful of Cistus - I've never heard this anywhere else, but but it sent me into full autoimmune arthritis. The pain in my hands and feet was incredible, and I still have a bit of it that flares up occasionally even two years later. It was definitely the Cistus too, and I had never had a hint of that particular pain before I started drinking it.
 
I would be careful of Cistus - I've never heard this anywhere else, but but it sent me into full autoimmune arthritis. The pain in my hands and feet was incredible, and I still have a bit of it that flares up occasionally even two years later. It was definitely the Cistus too, and I had never had a hint of that particular pain before I started drinking it.

Very sorry to hear this Froggy. It didn’t cause any more pain than usual but some other symptoms were worse. I’ve stopped it for now.
 
I've been breaking out with skin infections from time to time on what appears to be ringworm. Could this be a clue?
 
@kurt have you tried a raw meat and fermented meat elimination diet? I'm in carnivore community and have heard a few stories about these things helping. Of course everyone's microbiome skin biome is different. I'm not brave enough yet to do fermented meat..... but raw ribeye can give me tremendous energy 24 hours later.
 
@kurt have you tried a raw meat and fermented meat elimination diet? I'm in carnivore community and have heard a few stories about these things helping. Of course everyone's microbiome skin biome is different. I'm not brave enough yet to do fermented meat..... but raw ribeye can give me tremendous energy 24 hours later.
Probably great for quick energy, but a huge dose of tryptophan, which I am learning is a big variable in candida toxicity.
 
Your theory that ME/CFS involves a complex fungal intolerance really rings a bell with me. I feel that you're spot on.

I had a rapidly progressing systemic candida albicans infection not long before all my present hypersensitivity to environmental molds developed, and all the ME/CFS symptoms incapacitated me. This has worsened every year for the last several years. I had been prescribed the maximum dosage of fluconazole for several weeks and experienced horrible die-off misery all during treatment. Afterwards recovering from the fluconazole herx, my formerly severe sensitivities to molds and certain foods disappeared for a while, only to return and continue with incapacitating fatigue and more allergic reactions than ever.
 
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PS: Can't take a probiotic often because I developed SIBO (small intestine bacterial overgrowth) doing it daily. More often, I take a single dose of saccharomyces boulardii + MOS (a good probiotic yeast that pushes out its evil cousin, candida albicans).
 
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Did you see this:

It is produced by the trypanosomal parasite (Trypanosoma brucei) in sleeping sickness (African trypanosomiasis). (Wikipedia for the Tryptophol entry.)

Ron Davis has spoken about the genetic makeup of our disease being very similar trypanosome illness.

Also this doctor said:
Are there any other uses for disulfiram?
· It is known to have anti-parasitic properties: giardia, malaria, leishmaniasis and trypanosomiasis.
· It has anti-cancer properties. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5730499/?tool=pmcentrez
· It has been reported to have anti-babesia properties.
· It has been shown to reduce plaque burden in a mouse model of Alzheimer’s disease.
· It has been shown to have antimycobacterial properties.
· HIV and retrovirus:
https://ascpt.onlinelibrary.wiley.com/doi/abs/10.1002/cpt.1220
DSF in combination research for HIV:
https://clinicaltrials.gov/ct2/show/NCT03198559
https://www.ncbi.nlm.nih.gov/pubmed/26614966

They don't know the actions on how Disulfiram is helping with Lyme bacteria but some patients are getting help from it. Notice how she said it can also help with trypanosomiasis.

I think there possibly could be an overlap in some patients between Lyme and ME/CFS. The testing for Lyme is horrendously unreliable. It sounds like there are false negatives and false positives.

I'm not sure what connection I'm trying to make here. Maybe just wondering along the lines of if some type of bacteria or parasite is increasing our tryptophol output is that putting us into some kind of trap like Dr Davis talks about?
 
How long does it take on average for Candex to work under different circumstances? For the moment I have 40 capsules, so for 10 days at the maximal dose of 4 capsules per day. A new bottle with 120 capsules is on its way but it will take some time to get here. Stupid custom fees in the EU and it now takes longer. I don't mind the fees (they are very low anyway and it still pays to order many of my supplements in the USA) but the delivery time is two weeks now... it used to be even 5 days... But I digress...

And... does Candex make you less tired? By how much if it is even possible to describe the extent...
 
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This is just an update to let people know I'm starting to work on the next blog finally. It has been a long time and I should explain what has happened. As usual it's a bit of a story. So stay tuned.
 
This is just an update to let people know I'm starting to work on the next blog finally. It has been a long time and I should explain what has happened. As usual it's a bit of a story. So stay tuned.
Hi Kurt and thank you for sharing your story! Will you be linking it here or should we look in a new location? Your story is very similar to mine & I also think of all the antibiotics I took as a kid plus the conditions I primarily took them for…chronic tonsillitis followed by chronic strep throat, and tetracycline for mild acne. It’s no surprise to me that my microbiome was a mess, and my small & large intestines were ripe for all sorts of pathogenic microorganisms…mine was Systemic Candidiasis too!
 
This is just an update to let people know I'm starting to work on the next blog finally. It has been a long time and I should explain what has happened. As usual it's a bit of a story. So stay tuned.

Did you finish your update post Kurt? I'd be very interested to read it.
 

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