A reader sent these questions to me
USING ANTIBIOTICS IN THE TREATMENT OF CFS
An Interview with Ken Lassesen
- Antibiotics played a key role of all three of your remissions, is that correct?
Correct each time the working medical hypothesis was different
- 1st time: Antibiotic resistant walking pneumonia (this was before CFS existed as a syndrome, the 1970’s)
- 2nd time: CFS proper
- 3rd time: Lyme disease (which gave a rationale for prescribing the antibiotics – since there is more resistant to prescribe antibiotics)
- Correct each time the working medical hypothesis was different
- What antibiotics did you use each time?
- The one’s in the 1970, i do not recall. I remember rotating thru several
- 2nd time: doxycycline, minocycline (with Olive leaf), Azithromycin
- 3rd time: minocycline, Amoxicillian – with Olive leaf, monolaurin, neem, tulsi etc.
- How did you choose those particular antibiotics?
- 1st time, because of the perception that we were dealing with an antibiotic resistant bacteria — the MD tried different ones
- 2nd time, MD was following Dr. Jadin’s protocol
- 3rd time, ND was following a Lyme protocol (with some negotiation from me)
- The non-prescription items were selected based on what would shift the bacteria dysfunction reported for CFS patients in 1998
- You’ve written at length about the Jadin protocol, though it was many years ago. [I’ll include a link to your PDF] Have your thoughts about that protocol changed any, in the years since? How many other CFS patients do you know, who’ve tried it?
- Getting patientcounts is always difficult because when it works, the person tends to disappear and gets back to normal life fast!
- The published rate was 70-85% went to remission. I believe it is at least 50%. A problem is that the 15+% that it did not work for are the ones in the CFS community saying it does not work! (Sample bias)
- The protocol is still an excellent approach if you do not have solid microbiome data to work from. With that data, you can become more selective in which one(s) to use — ideally with the 15-30% of non-responders decreasing.
- The three times you developed CFS, were your symptoms largely the same, or was there some variability of symptoms?
Variability in symptoms
- 1st time, “stress cough” and cognitive collapse.
- 2nd time, cognitive and physical collapse, MCS for a while
- 3rd time, digestive issues appeared with the above — this caused me to review the literature in this area and I re-discovered the 1998 papers (which I had dismissed in 1999 because there was no gut issues apparent!)
- Variability in symptoms
- Based on your surveys of readers, what antibiotics seem most effective, for someone with CFS?
- See https://cfsremission.com/2016/07/23/first-survey-results-on-antibiotics/
- I just grab the latest numbers (below)
|Much Better||Better||no change||Worst||Much Word||Herx Stopped||Odds Ratio|
Ranked by odds of improving:
- Metronidazole and Tinidazole
- From what you’ve seen and read, what are the biggest risks of taking antibiotics to treat these conditions?
- Severe herx — both the patient and the MD should be aware it may happen and what to do
- If you had to take antibiotics again, would you combine them with probiotics? If so, which probiotics come to mind, for which antibiotics?
Yes, I would attempt to pair them appropriately (which may mean doing some research. For an example see Beware nullifying probiotics by other “good stuff”
- i.e. Mutaflor and Symbioflor2 with Metronidazole and Azithromycin
- Yes, I would attempt to pair them appropriately (which may mean doing some research. For an example see Beware nullifying probiotics by other “good stuff”
- Your model posits that, for most CFS cases, an illness depleted their E. coli population, and without E. coli, pathogens were able to take up residence and kill the Bifidobacterium and Lactobacillus, among others. What studies led you down this path, about the key role played by E. coli?
- Actually my model is a stable persistent dysfunction of the microbiome. This can have many favors. Deleted E.Coli is a presentation that fits the data and is simple for brain fogged CFS patients to understand.
- What lead me down the stable persistent dysfunction was finding that the microbiome shift reported in 1998 and the protocol of Jadin were a match. Her protocol would counter the typical microbiome shift seen. Trying that hypothesis on for size (i.e. seeing if it’s prediction agrees with studies), found more and more agreement. Once the model has shown to hold water, then the non-responders made sense — they were different bacteria shifts that caused equivalent changes in the body’s metabolites but those bacteria may be resistant to these antibiotics.