A frustrated reader wrote
“Hi, Ken. I am diagnosed with CFS, FM, MCS, LYME DISEASE and I am celiac. I have read your article about taking lactobacillus and CFS. However, in my case I have very low lactobacillus and can not raise them. I also have high clostridium species but not clostridium difficile . I have done several treatments based on antibiotics selective only for the intestine – intestinal dysfunction. I am not having results with suppositories based on natural herbal extracts that a naturopath friend from Germany brings me.
I’m still the same. I have taken probiotics only with lactobacillus -Ther Biotic Factor 1- and now I am with ther- Biotic complete. I would like to know your opinion. I have been testing different probiotics for 5 years without any results. A million thanks”
To start, supplementing with lactobacillus probiotics will not cause your lactobacillus to increase. Most lactobacillus probiotics do not take up residency. They will just hang around for a few hours and be gone — see this post for studies. This issue is made more complex because while they are in your system for a few hours, they will also be killing off bacteria families that you are low in.
You have to encourage the remnants of your own lactobacillus to grow. There are several ways that may be needed:
- [ROTATE] Killing off the bacteria that kills off the Lactobacillus… At present, I would suggest as a (gentle) starting point:
- [CONTINUOUS] Providing suitable foods (that we know are missing in CFS patients because the bacteria producing these metabolites have been devastated)
- B-12, Methylcobalamin – 1000 mcg/day
- CoQ10 300mg/day – ideally with a few ounces of Grapefruit juice.
- B9 as Folinic Acid (the bioactive form) 1000 mcg/day
- Personal Note: After doing the above post, I started taking precisely what was suggested. While fully recovered from CFS, I had residue severe psoriasis on my heels with very deep cracks. Within two weeks, the cracks disappeared and the heels have been growing healthier every week.
- WARNING: Some people can respond with severe anxiety, see this external post.
- Vitamin D3 – 15,000 IU/day see this post for it’s impact on Vitamin B production
- [ROTATE] Population by probiotics known to take up residency (and thus can start making the environment friendlier to lactobacillus)
- E.Coli probiotics are my first choice.
- Mutaflor – a comment reads “After trying a number of suggested supplements, I wasn’t expecting much but mutaflor resulted in a complete symptom remission in only 3 days with no herx reaction. I thought I was cured but, sadly, after about a month mutaflor’s effectiveness dropped to almost nothing. “
- Symbioflor 2: see this post for some readers’ experience
- Bifidobacterium probiotics (with no lactobacillus) see this post for what’s available and relative costs
- E.Coli probiotics are my first choice.
My model is simple to understand: “There is a shift across dozen of bacteria families — the shifted (bad) families cross support each other making it hard to undo. Some item X may reduce 90% of dominant (bad) species, resulting in apparent remission — but the remaining 10% become resistant and slowly regrow — resulting in a relapse. You have to slowly repopulate across multiple good bacteria families until they are able to keep the bad bactera in control (ideally evict them).”
This means that you need to keep rotating herbs, spices, probiotics, antibiotics, at least every two weeks (every week is fine!). The 10% that survived week#1 are unlikely to survive a different antibacterial that uses a different mechanism. You may be down to 1% — but 1% can still regrow… so it is constant rotation even after symptoms disappears. You may later go to one week on and 1-2 weeks off; keeping a close monitor on symptoms. Mutations will cause resistance constantly — thus you must keep ahead of the mutations by constant changing of antibacterials.
I do not have a treatment plan or a protocol. I have a model. I also consolidate clinical results from PubMed. My goal is to just provide a list of candidate substances to try (in discussion with your knowledgeable medical provider) which are more likely to help than randomly trying things. These candidate substances are also consistent with the model, for example —
- Low B12 –> no/low Lactobacillus Reuteri (which produces B12) –> verified from lab results
- Low B9 –> no/low Bifidobacteria (which produces B9) –> verified from lab results
- Low Vitamin D3 –> low production of B vitamins