A reader wrote:

“As an engineer and accountant I have been so appreciative of the work you have done.  I found your site last June (2017) when looking for anything to help my daughter.  We did a UBiome in Oct and a second UBiome in March 2018… Today i finally  got back to see the changes you have made since the site was launched in January.  I am still working through interpreting the aggregated results. 

At this time I had one intriguing observation as it relates to my daughter’s results.  After 11 years she was finally been labeled as having fibromyalgia with 18 of 18 trigger points.  We had started doing some of your protocols in the fall and have gotten increasingly into the routine.  (It is hard for her to do it on her own …..)

Using the protocol many of her symptoms have improved, not tremendously, but improved. 

• Migraines have gone from weekly to only one in the last 4 months,
• light sensitivity has gone from not being able to comfortably go out during the day even with sunglasses to being able to be outside on the nice spring days. 
• Anxiety much lessened.
• Brain fog a little better.
• Fatigue a little better.
• Another symptom, which is observational, is that her lip and skin color is much improved.  It was not unusual for her to have while or blue lips most days.  Currently, she rarely has color that pale. I actually use that as my first assessment tool.  If she is looking a little grey or pale, I know she is having a poor day.

But, the one thing that has not improved are the FM symptoms of joint and muscle pain, still pretty severe.  Now the interesting observation, I just got done entering all of the 3/31/18 UBiome results.  And when I did the compare samples, the October test had a 0 for FM and the March test has a 1.  It just seems odd as her other symptoms (chronic fatigue, depression, digestive issues, etc) all had multiple hits.  

Just wanted to share with you as it was the first piece of information that appears to not match our situation.”

Standard Comparison

Overall, we have the significant improvement in the autoimmune profiles. The FM profile consists of only ONE item, so it is technically a 100% match! I just checked PubMed and there appears to be no further studies 😦 . We need to wait until someone does and publishes a study.

Suggestions

The one FM taxonomy is low lactobacillus. Looking at the recommendations, the specific probiotics to try seem to be:

• lactobacillus rhamnosus gg
• lactobacillus salivarius
• saccharomyces boulardii
• bifidobacterium longum bb536
• lactobacillus kefiri (Italy)
• lactobacillus reuteri

With CFS and FM — coagulation issues (past or present) is a factor. From my observation of myself, I believe microbiome plays a part — unfortunately, no studies could be found testing this hypothesis.

“Vasoconstriction occurs in the skin above tender points in FM patients, supporting the hypothesis that FM is related to local hypoxia in the skin above tender points.” [2000]

I said past or present, because the result of coagulation is typically fibrin deposit. It is likely that fibrinolytic may reduce or eliminate the pain points. Each of the items below work in slightly different ways.

Nattokinase

“ a nattokinase/fibrinolytic enzyme and this enzyme may be considered as a new source for thrombolytic agents.” [2011] https://www.ncbi.nlm.nih.gov/pubmed/?term=Nattokinease+fibrinolytics

Lumbrokinase

“The six lumbrokinase fractions (F1 to F6) with fibrinolytic activities were purified from ..“ [2004]  https://www.ncbi.nlm.nih.gov/pubmed/15469696

Serrapeptase

“ reports suggest it to possess anti-atherosclerotic effects also, due to its fibrinolytic and caseinolytic properties.” [2013] https://www.ncbi.nlm.nih.gov/pubmed/23380245

Bromelain

“ studies demonstrate that bromelain exhibits various fibrinolytic, antiedematous, antithrombotic, and anti-inflammatory activities. “ [2012] https://www.ncbi.nlm.nih.gov/pubmed/23304525

CAVEAT

“Because clotting is an issue for my daughter.  The amount of bleeding she has after having blood taken for tests always surprises the techs as blood is streaming down her arm.”

For one of my own daughters, she was found to have  three inherited coagulation defects. One from me, and two from her mother. I would press for a full inherited coagulation panel for you daughter. There may be multiple factors at play:

• Fibrin generation
• Absence of bacteria processing or producing Vitamin K (thus the blood streaming)

According to Wikipedia, E.Coli produces Vitamin K2 (desired form). So mutaflor and/or Symbioflor-2 should be considered also for probiotics.

Other bacteria producing Vitamin K include:

• Enterobacter agglomerans,
• Serratia marcescens and
• Enterococcus faecium. [2006]

Bottom Line

As always, consult with your knowledgeable medical professional.

” The one thing I like about your site is that it presents possibilities.  The big problem for me is that I am an engineer and we are trained to only change one variable at a time.  You have now presented me with a number of new things to try and it will take a while to work through them.  I will let you know if anything seems to be significant.”

As a mathematician and statistician, I am similarly trained. When I started doing big data and fuzzy logic professionally the discipline of one item at a time was no longer possible. The result is I give choices and a fuzzy-logic probability of each having the desired  effect.

This is an education post to facilitate discussing this approach with your medical professionals. It is not medical advice for the treatment of any medical condition. Always consult with your medical professional before doing any  changes of diet, supplements or activity. Some items cites may interfere with prescription medici