I do not have a protocol. I do not have a treatment. I have a model of what causes CFS from which individual patients (with their medical professionals) must find their own path. I do post general suggestions, like my Updated Model and Treatment Suggestions. Some suggestions will work for many and be adverse to others. The model — a shift of bacteria — is in agreement with this. Your gut bacteria is unique before you got CFS/IBS/etc. How it shifts is also unique.
A lot of my suggestions are theoretical. This appears to be a good idea based upon available data. For example, taking an E.Coli probiotic because low or no E.Coli is seen consistently in the lab reports. Whether a specific E.Coli probiotic is right is one best answered by practical experience reported from people trying them. The two reports below both had problems with Symbioflor-2 (which is the easiest to obtain). Mutaflor (E.Coli Nissle 1917) and E.Coli Leve 1931 are two alternatives. E.Coli Leve 1931 is not sold as a living bacteria, but the metabolities from this bacteria (so no risk of taking up residence).
Your contribution to surveys help others and yourself. See this summary page with links to surveys.
A long term reader update report
Even though I have been out of touch I am still reading your blog and appreciating it greatly, and have shared it with others.
I wanted to give you another update….the last time I wrote you, I had just tried Symbioflor II, which really didn’t work for me, and I also asked you about how you defined “remission” and I followed your advice and got a really undemanding part-time temp job which lasted couple of months and which I enjoyed a lot but which let me know I didn’t have as much stamina as I thought I did because I got sick the first week in and then was back to sleeping whenever I wasn’t at work. There was also a lot of family upheaval ….
Anyway, all that is background to the fact that I am actually doing pretty well in many ways, much thanks to you, plus a couple of other things that I have started doing that seem to be shoring up my results. I would say that I am at 60 – 70 percent energy most days, with that being pretty steady. In other words, without the energy surges and crashes I used to have before I got sick. I’m not taking naps, and all in all I’d say I have enough energy to get by on except the one deficit I really still have is in drive and motivation and the ability to concentrate (I sort of think of those three combined as one thing)
Here’s what I am doing:
- Using the CFS Remission model – I will send you a detailed list of what I am taking in a day or two. I made changes based on your suggestion that I alternate between Prescript Assist and Equilibrium, which worked well. I also tweaked my herbs based on the results of your reader survey, and added in D-Ribose at the suggestion of a friend with fibromyalgia (and then I saw that you had written about it though I somehow missed it).
- I finally saw a naturopath in October who said the CFS/ME diagnosis was pretty obvious…She did look at my supplement list, though, and gave it the thumbs up. She also made some diet recommendations…What I noticed about food lists for me is that many of the foods were those I had already been avoiding from the histamine restricted diet. Also, I had noticed that I felt a lot better when I ate beef, which according to the BTD is probably the best source of protein for me. It also recommended against grain (which you have also) and dairy. So I just chose to interpret her recommendation primarily as keep avoiding histamines, keep eating beef, and cut out milk and most grains, and of course most sugar and that seems to be working for me. I would say it has made the difference between having steadier energy vs. surges and crashes, which I was still having up until I started eating this way. I have also lost a little bit of weight, which I am happy about though I wasn’t really trying to do that.
- I have gradually started exercising again. As you know it’s hard to exercise with CFS, not to mention contraindicated, so I had cut way back and was pretty inactive and deconditioned as a result of basically sleeping a whole year, and then when I got whooping cough you basically can’t exercise without triggering a fit that makes you feel like you are going to die. I literally once turned blue from doing the kind of yoga where you do nothing but lay on floor and breathe; it was terrifying. So despite the fact that exercise has always been my go-to for managing my depression, I was scared to start exercising again. I started with walking (since I have a dog) and using Audible, and I am enjoying it immensely, averaging about 8,000 steps a day, and sometimes a lot more – I got lost when I visited my husband (working away from home) and walked 11.5 miles and expected a crash afterwards, but none came. Yay! I have also started swimming twice a week (deliberately doing it *much* less strenuously and with less duration than I used to, because I think over-swimming was part of what triggered my CFS or mono or whatever my initiating event was) and rather than having to nap after a workout I feel energized. I want to do yoga again but the turning blue scare is still holding me back a bit even though I know I am recovered from whooping cough…if my heath holds up I will ease my way into that too.
- This is something that I haven’t mentioned before, I don’t think….I have had depression on an off since adolescence, sometimes acute, sometimes low-grade, and have been off and on antidepressants since my twenties. Most recently, I was on them for about 10 years, and at the time I got whooping cough I had three prescriptions going. While acutely ill with whooping cough, I was too sick to take them and thus went off them without intending to. I didn’t want to start them again without talking to my prescriber, but, meanwhile, between the herbs and probiotics etc., which I did restart when I was able, my mood problems diminished drastically. I never did go see my prescriber and now have been off for almost a year, and feel better than I did when I was taking the meds (even though they helped and I am not an anti-med person at all). Often, if I go through a patch of getting tearful easily, adding in or increasing the Miyarisan takes care of it within 24 hours.
Anyhow….I wanted to let you know I am still around and still “working the program” and very grateful to you.
I found your post today very interesting. I took Symbioflor 2 in February and unlike
your other reader has a dreadful reaction – very bad burning throughout my entire digestion
system. It made a bad situation even worse and I have not yet recovered. This would tally
with the significant survival time of the bacteria.
On a different note, as I mentioned I am currently in the middle of a very bad
period of digestion pain. So in desperation I tried my remaining Prescript Assist.
I find they only have an effect if taken at 2 or 3 times the dose.
2 days later I can feel my bowel inflammation lower
Comment: The remedy for adverse reaction to E.Coli probiotic is to take Lactobacillus probiotics. These suppresses E.Coli. Lactobaccillus Gasseri is the preferred one.