This is part 5 in a series on the theory that ME/CFS involves a complex fungal intolerance. If you have not read the introduction and parts 2-4 which discusses the theory and treatment experiment, that is recommended before reading this post. This is a discussion of treatment success factors so far for the experiment, based on my experience as well as the experiences of several others.
Over the months when several ME/CFS patients have been trying the treatment approach outlined in the experiment in part 4, we have each gone through similar experiences. We are still learning, but a few observations may be worth sharing. This is a list of useful observations and success factors that I think are relevant to anyone using this type of approach to ME/CFS.
Now on to Part 6 ...
Over the months when several ME/CFS patients have been trying the treatment approach outlined in the experiment in part 4, we have each gone through similar experiences. We are still learning, but a few observations may be worth sharing. This is a list of useful observations and success factors that I think are relevant to anyone using this type of approach to ME/CFS.
- Using the treatments separately did not work, all the parts of the treatment approach were needed. My daughter and I had taken every one of the supplements previously, without lowering tryptophan or continuing the other parts of the treatment approach discussed in part 4, and we did not have the complete positive response. This is probably due to the complexity of Candida toxicity in the small intestine.
- There can be an initial die-off type reaction to the anti-fungal supplements. This can be modulated by reducing the dose frequency or by reducing the dosage. Or both. Particularly with the cellulase enzymes. To build tolerance to cellulase I started with a half capsule the first few days, then moved up to two, then three capsules. But that was too much, and I had to go back down to one for several weeks. Eventually I was able to go to two capsules daily, one an hour before breakfast, and one an hour before dinner, both on an empty stomach. Everyone who is trying this approach so far, reports similar die-off reactions and has needed to start with low doses and move up gradually.
- We always started with tiny test doses of new supplements to ensure tolerance. I have done this for many years for all new supplements, so I tried tiny doses of the cellulase enzymes before taking capsules. I think this is a good idea for highly sensitive ME/CFS patients. Some might even want to just taste a little on their tongue, to make sure they don’t react. However, so far, the cellulase enzymes have been well tolerated, as long as people don’t take too much right off.
- We increased doses very gradually. Once we knew we tolerated cellulase, it was important to start with a very small dose then increase dose gradually. I believe this is important for any strong anti-Candida supplement. Several people trying this approach have just followed the bottle’s instructions and started with several capsules of Candex (a cellulase enzyme product), thinking they would be fine, particularly if they usually tolerate supplements well. They all experienced a strong die-off reaction a few hours later, even though the product instructions say there is no die-off. Maybe the manufacturers have not tested their products with ME/CFS patients. After recovering from the die-off reaction, when they have tried starting with a partial capsule and increasing the dose more gradually to a maintenance level, they tolerate the cellulase well. So the success factor here is to be careful taking cellulase for the first time, even if you are not usually sensitive to supplements. We started with quarter or half doses and worked her way up. My daughter had to start with about half the dose I tolerated and still takes less than I do. Each person will have a different tolerance for this treatment approach, so starting with a very small dose and working up slowly, then staying within your tolerance seems to be very important.
- The use of general antimicrobials mattered. Taking general antimicrobials along with the cellulase enzymes and the other treatments mentioned in Part 4 has been important. When I don’t take the antimicrobials, Candida is more difficult to manage and symptoms return. The antimicrobials I am using include some with antiviral properties, and I suspect that is part of the benefit. There is evidence in ME/CFS research that latent viral reactivation may be involved in some cases (possibly reactivated HHV6 or HHV7, for example), and some viral infections can diminish the fungal response of the immune system. I suspect a viral suppression of fungal defense could be a primary part of this Candida pathology. That would explain why antimicrobials are essential in this kind of anti-Candida treatment approach.
- Oral rehydration was very important as part of this treatment approach. I suspect this has two reasons, first a fungal infection can be dehydrating. Secondly, the higher salt in the rehydration drinks may assist with stomach acid production. Better stomach acid production should in theory lower the candida load going into the small intestine. I don't know if this is actually happening but we definitely noticed that the salt broth rehydration part of this approach was essential.
- Taking cellulase on an empty stomach was important, as that allows the cellulase to get through the stomach and into the small intestine without being broken down. The instructions on the bottles usually say wait two hours after eating, but sometimes 90 minutes seems adequate. If you can tell when your stomach empties, that would probably be the earliest you would want to take cellulase before a meal. So take it after the stomach empties and a half hour to an hour before the next meal.
- We altered the doses during viral illness. We learned to lower the dosage or lower the number of capsules when we had acute viral symptoms. An immune reaction while taking cellulase seems to overload the detox pathways for us sometimes, and lowering the dose or skipping a dose seems to help make a normal viral immune response more tolerable.
- We seemed to fight off viral infections better than normal during the treatment approach. Even if we have to skip a few doses of cellulase to tolerate a virus, we worked through the viral immune response faster, and overall seemed to have a better resistance to ordinary viruses.
- There was some symptom ‘retracing’ during the first two months of taking cellulase. This is common in Candida treatments, and it worked like it was on a schedule. Usually it started with a lower backache that lasted for a day or two. After the backache went away other pains would start in other places, following our usual ME/CFS symptoms. The idea of retracing is that this is a reversal of the original symptoms, like peeling back the layers of an onion. But it felt more like a gradual spread of the positive effects of treatment through the nervous system. Starting at the base of the spine. Which might seem like symptom retracing. This was milder than normal ME/CFS symptoms, and fortunately did not last long. The retracing was interesting to experience, I’ve heard of it before but never had experienced it. After each of the ‘retracing’ symptoms came and went, I would feel a little more vitality in that area of the body.
- This treatment approach requires a lot of patience during the first few months, due to the slow and steady improvement, with occasional setbacks. For example, improvements in digestion were obvious after a few weeks. Energy however did not start to return for a few months. Also, when I went through a bad flu virus some improvements seemed to reverse, it was like I had a return of regular PEM for a few weeks. Fortunately that reversal ended after the virus had run its course and the improvements have continued. Treatments with slow progress using small doses that are gradually increased require a great deal of patience.
- Full recovery could take a long time because of the need to repair cellular damage due to tryptophol exposure across the body. Some of the repair may need to wait for cellular turnover. While the intestines should heal in a few weeks due to their cellular turnover, cellular turnover in organ systems outside the gut, such as liver, kidney, and lungs, takes several months, and in some cases up to a year. Turnover can even take multiple years for cells in some organs like the heart (5-20 year range per one study), or the brain (unknown number of years). So I expect full recovery to take a long time, and I plan to stay with this treatment approach and monitor progress for the long-term.
- I learned to think differently about cause and effect in this disease. Succeeding against Candida requires thinking in an integrated, multi-factorial way. For example, I had to learn to recognize that being stressed would lead to elevated glucose and slower digestion, which would mean Candida would flare up and I would be more sensitive to my diet that day, and that would lead to more tryptophol production, so I might have more difficulty sleeping that night if I exerted too much. So if I felt stress starting up, I would have to think through how all these types of factors would interact.
- Candida seems to interfere with the mind-body relationship, perhaps through altering the gut-brain axis. Successful Candida treatment seemed to push the mind-body relationship back to a prior state. This is hard to explain, but during treatment I often felt like I was starting to see through a haze for the first time in many years. My thoughts started having a more direct effect on body functions, including ANS functions like the sleep-awake cycle, regular breathing, baseline muscle tension, and digestion processes. My mood stabilized and anxiety levels decreased dramatically. My memory function also seemed to shift backwards a bit, that took awhile to get used to, for a while my life 20 years ago seemed more current than the past few years. But eventually all the memories seemed to reconnect to the proper timeline. Perhaps the brain had to make some memory connection adjustments as the toxin load was reduced.
- Improvements followed an orderly sequence. As the treatment approach started to work, particularly when I added the cellulase, it was interesting to see the shifts in symptom after symptom. The first improvement was better sleep, it was restorative for the first time in decades. And then I started noticing gradual improvements in mental focus and energy. Eventually there were gains in overall endurance. Then after a while I started noticing the return of some aerobic energy, I was able to use my muscles again and I would breathe better when I did. Then I noticed my joints were stronger, my TMJ started to heal, my back was straighter and my CCI type symptoms started decreasing. Finally, my atrophied muscles started returning and I regained weight I had lost over the past few years as my health had declined. My heart now seems stronger, with fewer palpitations and no significant tachycardia. Even my teeth were improved, lightening in color, which I think is a good sign. My daughter experienced some of the same improvements, and was very happy to have some aerobic energy again. I look at all of this now as a systemic effect, where each improvement may have helped with the next improvement. As the fungal load was reduced, the body seemed to follow its own internal recovery process, an upward spiral of healing.
- There were only a few secondary issues. I keep expecting secondary problems to crop up. Some treatments I have tried over the years have had serious side-effects. Fortunately, so far there have been no major secondary problems. But I have noticed a few minor issues. I have to keep my mind active and focused, but without using too much energy. Because with more energy available, my mind is more easily able to obsess over something. It is like OCD. However, I have learned to manage that and am able to use the increased energy productively. I think this may be a kind of uneven recovery process and maybe over time will resolve.
- Nutrients to support the healing process have been important. I have tried to ‘listen’ to my body, to sense what I am hungry for. Just an example, I have tried a few new foods, and started taking avocado oil, which is supposed to be well balanced for brain health. I drink when I feel thirsty, and have noticed more stable hydration levels, fewer dry throat, dry eye symptoms.
- I try to practice acceptance and keep emotions level. I believe this is important because strong emotional responses could cause glucose swings if the adrenals are activated. I remind myself there is no way to know how far improvement will go, and how much recovery is possible. Only time will tell, and I am being content with that. This helps keep my emotions neutral and glucose levels more stable.
- I tried not to change any treatments during the experiment. Including treatments unrelated to the experiment. So I could say with more certainty that this treatment made the difference in improving my symptoms.
- I sometimes did not recognize functional energy improvements until someone else noticed I was able to do more. Having someone else monitoring progress helped me stay on task when I was not perceiving the improvements.
Now on to Part 6 ...
