I have a model that I am advocating that CFS /FM(with some other autoimmune and neurological conditions) is caused by a microbiome dysfunction. The model thus predicts that correcting this dysfunction should result in reduced symptoms and potentially remission. This model is the simplest model that appears to agree with all of the literature and is testable. For example, IL-16 was recently identified to be LOW in CFS, the bacteria producing IL-16 were found in PubMed, and those were the same ones that are reported low or almost non-existent in CFS patient. This appears to confirm the model.
A model is useful for determining candidate treatments. Some may work, some may not. The odds are that more will work than doing random treatments. On the last relapse, it was 10 weeks before “a clear turning point happened” — I ascribed it to the last change (8 “OO” capsules of Tulsi for the prior 10 days). It may not have been the Tulsi, rather week 8 of minocycline pushed things over the recovery edge. With a single person during an approach, it is impossible to be certain.
How can you tell if changes are happening
First, a herx is never a certain. A herx depends on the specific strains in your dysfunctional microbiome. Running a marathon easily would also be an indicator — but that is likely not to happen. So how do you answer the question “Did this make a change?”
For me, there are several indicators that I use for myself:
- If I start to flush (flush more) from my usual 500 mg of flushing niacin each morning — I interpret that is due to toxins from killed bacteria causing vascular constriction.
- Change in sleep pattern – intensity. Taking Miyarisan resulted in long hard sleeps for me and several others. Taking a Bifidobacterium mixture (10 Billion CFU) resulted in lighter/shorter sleep – without tiredness waking.
- Change in stool shapes and frequency. Same applies to urination pattern.
- Change of weight! – several families have been associated with weight gain or loss.
- Change of preferences for food! — Once upon a time, I had a sweet tooth. Today, it takes little to “max” me out, and I do not have cravings (I do have some conditionings that I need to work on!!)
- Change in cognitive or neurological functions. Some probiotics really dropped my stress level and reactivity level.
- Stopping or starting Night Sweats. Miyarisan stopped the residue night sweats that I was having despite the remission. Starting may indicate that body is fighting an infection.
- Changes to temperature preferences. You may like hotter or colder rooms. A recent study found that environmental temperature impacts the diversity of the microbiome.
- Changes in body temperature. Typically, CFS have low or very low temperatures. As I recovered, my temperature increased. This is a good objective measure. Do at least once a week at the same time each day.
- Changes to or from having a “dry mouth”
If you look for the grand performance change, you may miss the above and stop something that is actually causing you to slowly improve.
Are there other indicators that readers have used?
Yes, I am going off the belief that any change is better than the status quo. The path to recovery may be slow, but there are many many many paths to correct a dysfunctional microbiome. Some can be challenging to walk because of the difficulty in obtaining (antibiotics, Mutaflor, Enterogermina, etc ); there are alternatives: selected spices, herbs, etc (Tulsi, Neem, Turmeric, etc) – which may or may not be as effective.
The key is to make sure that the alternatives are appropriate. I have place a copy of my matrix on me-pedia and will update it periodically (or on request from readers for specific items). It is what I used to test proposed herbs, spices, probiotics, and antibiotics.