Chronic Fatigue Syndrome and Myeloma

A reader has both diagnosis and asked me about any relationships and the complexities of treating both concurrently. I’m not a MD, but I am a tolerable researcher.

Co-Morbid Instances

My first observation is that getting numbers may be challenging because a myeloma diagnosis may disqualify many people from getting a CFS diagnosis. If the MD attributes some of the CFS symptoms to myeloma — then the CFS diagnosis cannot be done with the research definition (see symptoms in red below).

Myeloma impacts red blood cells which can result in low oxygen delivery which will cascade into symptoms also seen with hypercoagulation and thus CFS.

“Some problems (e.g., weaknessconfusion and fatigue) may be due to anemia or hypercalcemiaHeadache, visual changes and retinopathy may be the result of hyperviscosity of the blood depending on the properties of the paraprotein. Finally, there may be radicular pain, loss of bowel or bladder control (due to involvement of spinal cord leading to cord compression) or carpal tunnel syndrome and other neuropathies(due to infiltration of peripheral nerves by amyloid). It may give rise to paraplegia in late presenting cases.” From Wikipedia

WebMd says “Multiple myeloma is a blood disorder related to lymphoma and leukemia, because it usually arises in the bone marrow. There is no cure for multiple myeloma, but treatments are available that slow its progression.”

There is an increased risk of cancer with CFS,  CFS-Ireland gives a nice list of studies, and the original Incline Village outbreak had a high incidence of cancer.

Mechanism?

We know that many cancers are associated with a virus, we also know that virus can alter gut bacteria (effectively farm it to support the virus). There has not been (that I could find) a specific virus associated with Myeloma.

At this point, if you have an apparent double diagnosis I would suggest trying to verify that CFS is likely, to do this, I would strongly recommend:

  • A SPECT (not MRI) scan — which should show major issues in 80% of cases
  • A Microbiome analysis — which should show almost no E.Coli and the typical shifts seen with CFS
  • Vitamin 1-25 (not the regular Vitamin D) – which should show very high levels

If you are not positive on at least 2 of the above 3, then the CFS diagnosis is probably (95%) false.

 

 

The Gut and Exercise

Exercise and Chronic Fatigue Syndrome tends to be a “hot button”  to many patients. The reality is that mild exercise is important. I have (and continue to) use WII Fit to track weight and monitor activity levels. There are some extremely mild exercises — just shifting balance, and progression up to yoga and step exercises.  The key is never to progress aggressively — just add a minute a day at most, or move up one more step for one exercise in their exercise scale for one exercise.

What does the literature say about Gut Bacteria and Exercise?

The first article of interest is not listed on PubMed, but may be read hereThe gut microbiota, dietary extremes and exercise  9 June 2014 doi:10.1136/gutjnl-2014-307305 which found “ The results provide evidence for a beneficial impact of exercise on gut microbiota diversity but also indicate that the relationship is complex and is related to accompanying dietary extremes.

 

  • Exercise induction of gut microbiota modifications in obese, non-obese and hypertensive rats. Petriz BA, Castro AP, Almeida JA, Gomes CP, Fernandes GR, Kruger RH, Pereira RW, Franco OL. “These data indicate that non-obese and hypertensive rats harbor a different gut microbiota from obese rats and that exercise training alters gut microbiota from an obese and hypertensive genotype background.” [2014]
  • Exercise attenuates PCB-induced changes in the mouse gut microbiome. Choi JJ, Eum SY, Rampersaud E, Daunert S, Abreu MT, Toborek M. [2013] “Our results show that oral exposure to PCBs can induce substantial changes in the gut microbiome, which may then influence their systemic toxicity. These changes can be attenuated by behavioral factors, such as voluntary exercise.” – this is significant to those who suspect some chemical like organo-phosphates is a contributing factor.

  • Exercise-induced splanchnic hypoperfusion results in gut dysfunction in healthy men. van Wijck K, Lenaerts K, van Loon LJ, Peters WH, Buurman WA, Dejong CH. [2011] “Splanchnic hypoperfusion is common in various pathophysiological conditions and often considered to lead to gut dysfunction. While it is known that physiological situations such as physical exercise also result in splanchnic hypoperfusion, the consequences of flow redistribution at the expense of abdominal organs remained to be determined. This study focuses on these effects” — this is double significant because hypoperfusion is seen in SPECT scans of CFS patients, as well as being the major part of Hemex/Berg model of CFS. Hypercoagulation contributes to the shift of gut bacteria!

So, hypercoagulation will make it harder for the gut to return to normal — and it will also cause you to tire faster when exercising.  Even mild short daily activity (I would not say exercise in the usual sense), will have a slow and positive effect on gut bacteria,

Another Lab Analysis

Another reader asked me to review and provide comments for their CFS MD (who is also well known in the community). As always, these are suggestions based on my model and my own experience and intended to be review by a knowledgeable professional before implementing.

Person Symptoms

“My story is similar to yours, including an eventual Lyme diagnosis, but antibiotics only helped somewhat. I still have chronic fatigue, inability to exercise, and pain. My biggest complaints are neurological. My brain fog is so intense most days, I haven’t worked steadily in years. I used to be a full time writer and internet consultant, even doing some light programming. Now everything is like Greek to me.

What’s interesting is that my sickness started with IBD and a Chron’s diagnosis, but both were later deemed false after tons of testing. Around 2003 I lost 40 pounds and couldn’t eat anything without diarrhea and extreme pain and nausea. But all of my gastro symptoms were healed by diet, some short rounds of antibiotics and pancreatic enzymes. I haven’t had GI complaints in ages, almost eight years now of almost perfect GI health. Every other symptom has been on a gradual decline leaving me pretty disabled, especially in the brain functioning area.”

Initial Comments

I know people who had a CFS diagnosis, treatment and then ended up with “atypical Crohn’s Disease”, complete with fistulas.  My belief is that we are talking often about a microbiome dysfunction that evolves over time with the population in the gut determining symptoms, etc.  The symptoms are likely determined by the specific strains of species which is well beyond current medical knowledge — but with further improvements of microbiome testing and Big Data analysis could be realized within 10 years if well funded.  Ten years is tooooo long to wait for me (and others), so we have to go back to old school approach and infer and do the best that we can given limited knowledge and even more limited treatment options.

Test Results

  • Lab: Doctor’s Data (same lab as the prior review)
  • Expected/Beneficial flora
    • 4+ Bacteroides fragilis group
    • 3+ Bifidobacterium spp.
    • 3+ Escherichia coli
    • 1+ Lactobacillus spp.
    • 1+ Enterococcus spp.
    • 3+ Clostridium spp.
  • Commensal Flora
    • 1+ Alpha hemolytic strep
  • Normal flora
  • Secretory IgA – borderline low

First thoughts

This is not the typical CFS shift.

Our own friend after antibiotics: Clostridum

This seems to be best ascribed as a side-effect of antibiotics. First thought is Prescript Assist  (no studies, but some MD’s appear to believe it helps).  There are no clear results on the effectiveness “the authors of this study chose to omit any trials involving the use of probiotics for the prevention or treatment of CDI.”[2014] Other choices are:

Bacteroides Fragilis

This species has been associated with neurological changes:

Bifidobacterium longum BB536 appears to reduce the bad ones, this is the species available in Japan.

In terms of herbs:

Suggestion based on my own experience with Cognitive Issues

When I was starting to suffer loss of cognitive issues, I hit the fibrinolytic and anti-hypercoagulation supplements hard, and that kept me working for several months. When I stopped them, the cognitive collapse was quick and severe. I stopped because I was starting to bruise very easily.  My belief is that the coagulation was cause by gut bacteria. I seem totally free of coagulation issue today.

During the recovery, there was a dramatic improvement over two weeks of cognitive issues from taking Haritaki,  Neem and Tulsi. One of the studies I found indicated that some of these was used by traditional Indian medicine men (tribals) for cognitive issues with their patients — so I speculate that it is effective against some of the bacteria causing cognitive issues.

I’m going to run on the herb – cognitive issue tangent here.

Web References:

My general impression is that the following herbs should be tried (one per week, working up to 6 “00″ capsules per day if tolerated), noting any cognitive or mode changes from each (if you have a significant other — ask them to record their observations and not report to you until you are done.

  • Haritaki
  • Neem
  • Tulsi
  • Ashwangandha
  • Rosavin
  • JuJu
  • Magnolia Bark

All of them appear to impact bacteria that alter mode or cognitive functions. I have noticed that some probiotics can also alter mood on occasion — however, since we are dealing with overgrowth — I believe the use of herbs may be a wiser course.

Once the cycle has been done — you may wish to cycle with the ones that had the most desired impact.

 

As always, review with your medical professionals, take detail notes, and best wishes on whatever experiments you proceed with.

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