lassesen 10:19 pm on September 10, 2017  

Another uBiome for a MCS person

Patient Summary

  • “67 now, MCS started in 1982
  • Universal reactor is a good term for me, not only did I over-react to a huge variety of odors and foods but I could over-reacted to almost everything I ate or smelled and I reacted in other senses too.
  • Touching the wrong thing could result in the same type reaction as eating the wrong thing or smelling the wrong thing.
  • I over-reacted to sound and emotionally too. But the food and the odor reactions were by far the most extreme and damaging.
  • I have improved over the past 10 years or so. The MCS has improved greatly (though it is still there) but food reactivity is still quite severe. I can eat very few foods.
Currently I have to live on 3 types of meat, 3 vegetables and a nice variety of fruit.
  • Meats:
    • Venison, turkey, camel
    • Recently started to react to elk and beef
  • Veges:
    • bell peppers (red, orange, yellow)
    • celery (raw or cooked)
    • romaine lettuce
  • Fruits: React to:
    • Watermelon,
    • Concord grapes,
    • Muscadines
  • I did spend 12 years at the beginning unable to eat any fruit whatsoever and only recently have I been able to eat a wide variety of fruit. And I once spent 8 months able to eat only beef round cuts and drink distilled water. That was my most limited period.
  • I never thought of myself as having ME/CFS though I had strong fatigue issues. Just didn’t seem to fit the pattern.
    • I did not have PEM for instance though I may not have had the strength to exert much at times. But if I could go any length of time without reacting my fatigue would lift considerably.

History:

  • I tried  Robert Gray’s cleansing program with herbs and psyllium seeds. 
    And I added colonics and enemas to that under yet another experts advice.  
    Always slender and more so from that first diet, within a couple of months I looked like a concentration camp victim. At 5’11.5″ I got down to 117lbs. I could just barely function. 
    Then I figured out I was reacting to almost everything I ate. And I still am 35 years later.
  •  I tried things but seldom for more than a couple of days (the time it would take me to start reacting to a new item).
  • I tried many many alternative supposedly health enhancing approaches that did not involve food or supplements. 
    Some of those did help like biofeedback, neurofeedback, a meditation like approach called Open Focus was very good. I had lots of body tension so I tried all kinds of body work and still do. A few of those were very helpful (Neurosoma, Hendrickson Method, Fascial CounterStrain come to mind).
  • I currently do different types of exercise for fitness and for specific physical complaints. I also do intuitive movements and I am learning Qigong. 
    And work with early trauma. All of this has been helpful and likely has helped me improve my vitality and reduce the severity of my symptoms.
For the first 30 of those 35 years I took no supplements (for more than a few days).
  • The only supplements I currently take are magnesium citrate (for kidney stones), cherry juice and cherry extract for gout and pain, and recently vitamin A. Almost all supplements I try I react to though not as strongly as before. The magnesium citrate and cherry juice clearly help for those
    specific uses.
  • Over the first 30 – 33 years of this I could not take probiotics. They were especially reactive for me.
  • I tried different ones but only for 1 or 2 days and then I felt too awful to continue.
    • Currently I am taking Equilibrium without reacting.
    • I also took Prescript Assist for awhile though I seemed to react to that eventually and stopped.
    • All the others I tried I never continued more than a few days or maybe a week or two before reactivity made me stop. I never noticed any improvements from probiotics.

I would really appreciate any ideas you have about my condition. ”

Basic Criteria

  • Firmicutes/Bacteroidetes Ratio: NORMAL
    • Firmicutes: 1.02x
    • Bacteroidetes: 1.02x
  • Bio Diversity: 22%ile
  • Bifidobacterium: 0x
  • Lactobacillus: 0x
  • E. Coli Order: None
  • Akkermansia: None

You are like SIBO (at least the ones that I have seen) patients in having none of certain bacteria genus – but do not have two traits common with CFS:

  • High Bio Diversity
  • Normal Firmicutes/Bacteroidetes Ratio

So you are likely very correct in your judgement that you do not have MCS.

High Bacteria Genus

mcs1

Comparing to the earlier MCS with CFS uBiome — there are no common overgrowth in bacteria genus. You have high Dorea (which Ian Lapkin reports is commonly low in CFS and have been low in most uBiome of CFS patients).

DataPunk.Net has known details about this bacteria genus:

NUTRIENTS/ SUBSTRATES

ENDPRODUCTS

INHIBITED BY

ENHANCED BY

ANTIBIOTIC RESISTANCE

 

Sutterella is high — but according to DataPunk.Net, this is enhanced by a high protein diet (which is what you are compelled to eat).

Roseburia (genus)  being high is interesting because it is normally inhibited by high animal protein diet and high meat diet.

NUTRIENTS/ SUBSTRATES

ENDPRODUCTS

ANTIBIOTIC RESISTANCE

Pseudobutyrivibrio (genus)  we know little, but it’s end products is Butyrate.

Anaerostipes (genus)  we have more information:

NUTRIENTS/ SUBSTRATES

 

 

 

 

ENDPRODUCTS

Commonalities

Fruit Analysis

I wandered over to Flavor, Fragrance, and Odor Analysis and found

“The highest levels of ellagic acid are found in  walnuts,  pecans,  cranberries,  raspberries,  strawberries, and grapes, as well as distilled beverages….Urolithins, such as urolithin A, are microflora human metabolites of dietary ellagic acid derivatives “.. [wikipedia].. utolithins are also end products of Bifidobacterium.

The bacteria that produces utolithins are below,  ubiome indicate low levels of the other bacteria.

Gordonibacter: 0.20 X
(Earlier MCS person was .38x )
PRODUCED AS ENDPRODUCT BY:

Supplements

I recently did a post to determine what is not being produced when lactobacillus, bifidobacteria and E.Coli disappears [which is what your uBiome states]. You may wish to start supplementing with those items. ( I know someone else with MCS that is also about to try this)

  • Add one item at a time with a low dosage and slowly increase every 4th day until you hit “the recommended” dosage on the bottle — then move along to the next one.
  • Question: is ellagic acid resulting is die off (herx)?
    • Trying some of the other fruits high in ellagic acid should clarify it (i.e. raspberries)
    • All of the known ellagic acid producers are not there or low levels. Start with a low amount and slowly increase.

Bottom Line

My wishful common pattern did not appear. I did find some interesting coincidences:

  • Reacts to food rich in ellagic acid, have almost no known bacteria producing it.
    • Is this something that kills or inhibits the bacteria causing MCS?
  • Many of the uBiome shifts seen with SIBO and CFS are there — but the overall balance between Firmicutes/Bacteroidetes is normal and much lower diversity than CFS.
  • If flaxseed can be tolerated in small quantity, then slowly increase the amount to suppress the overgrowth bacteria genus,
  • Over production of butyrate is a possibility

Probiotics:

  • I know of another MCS person that has strong reaction to probiotics. Besides equilibrium which they also tolerate — they also tolerate Culturelle (see this post ”

    Probiotics: Lactobacillus rhamnosus – a MCS probiotic?“)

  • “The findings show that Bifidobacterium lactis containing fermented milk decreased cecal pH, altered SCFA concentrations, increased the relative quantities of lactate- and butyrate-consuming bacteria, and reduced intestinal inflammation scores (Veiga et al., 2010). ”
    • Bifidobacterium BB-12
    • Danone’s Activa — contains it.

As always, an educational post not intended as medical advice. Always consult with your knowledgeable medical profession before adding or stopping supplements or changes of diet.