Category Archives: Conditions

Unknown's avatar lassesen 7:47 pm on October 17, 2013  

So what does my maintenance plan looks like?

I am recovered – and prefer not to relapse back into CFS again.

Probiotics:

One week at a time, followed by 1-3 weeks off them

  • E.Coli Nissle 1917 (Mutaflor)
  • Prescript-Assist: 
  • Bifidobacterium infantis 35624
  • Lactobacillus Reuteri
  • Bacillus Coagulans
  • Streptococcus oralis, Streptococcus uberis, and Streptococcus rattus

Coagulation

Usually as needed, or one day each week

General

Regular parts of my diet

  • 10,000 – 20,000 IU of Vitamin D3
  • Multivitamin with minerals
  • All Rye – rye bread (Non-GMO)
  • Goat Cheese
  • 85% Dark Chocolate (190 gms)

As Needed if cognitive issues

  • ALA
  • Grape Seed Extract
  • Haritaki
  • Neem
  • Tulsi
Unknown's avatar lassesen 2:57 pm on October 5, 2013  

Early symptoms of possible auto-immune (FM/CFS/ etc) onset

There are two onset patterns seen with most CFS: sudden and gradual onset.

  • Sudden onset is associated strongly as a post-infection retaining of an altered microbiome. The gut bacteria did not return to normal after being farmed  by the infection. A patient did recover from the infection, NOT — the organism causing the disease was eliminated, but the trauma to the gut bacteria stayed on.
  • Gradual onset lacks this ability to identify a point of time (or the point of time was sufficiently insignificant that memory of it is lost).

Yesterday I spent the afternoon talking with a very long term colleague and friend about career opportunities and paths. He is a very successful professional in the early 40’s. He has been giving 200+% to his employer for a decade. He mentioned:

  • 6 months ago becoming gluten sensitive,
  • 3 months ago: lactose intolerant
  • There is no history of either sensitivity in his family
  • He has noticed a significant drop in his energy and ability to focus for extended time
  • Lab tests have shown very low vitamin D and B-12 levels
  • He is still able to work a full days.

All of the above, are characteristics I have seen time and again in people with auto-immune conditions such as FM or CFS. Low vitamin D, low B12, cognitive issues, and food insensitivity are seen in over 80% of CFS and FM patients. Having those conditions is not diagnostic, other condition present with them. A CDC-strict CFS diagnosis or FM diagnosis require additional criteria to be satisfied.

My Speculation (I’m not a MD so I can’t diagnose)

We know that random mutation of bacteria and stress resulted in some bad bacteria becoming established. We know:

  • “Neurobehavioral factors, such as stress and depression, also influence the risk of IBD (Irritable Bowel Disease).[2013]
  • “Also, food intolerances are very frequent, but usually inconsistent among IBD patients, and therefore no general dietary recommendations can be made in these patients.”[2012]
  • “Vitamin D3 deficiency is rampant which may contribute to increased risk of many diseases including cancer, cardiovascular disease and autoimmune disorders. ” [2013] this article goes on to describe alteration of RNA due to Vitamin 1,25D and 25D.

A search of PubMed finds some 2200+ articles on stress and autoimmune.

Testing for most autoimmune conditions early is unknown — usually diagnosis is made when the condition is well established. Often symptoms are blown off by medical profession as “aging”, or in the case of women as typical of “pre-menopause, menopause or post-menopause”.

Personally, I believe that testing for Vitamin 1,25D levels is likely the best early test to indicate the auto-immune direction. Vitamin 1,25D levels appear to be independent of Vitamin D (D3, 25D) levels which is what is normally tested for.

  • “Results showed a strong positive association between these autoimmune conditions and levels of 1,25-D >110 pmol/L.” [2009]

My own experience is that 1,25-D went very high with onset and dropped down to the normal range with successful treatment.  A value near the top of the normal range should be of significant concern.

Treatment Consideration

These are suggestions for him to discussion with his medical professionals. Since the symptoms are dominantly gut associated (food intolerance) then the two probiotics associated with successful treatment of Irritable Bowel Syndrome would be an excellent starting point — two weeks on one, and then two weeks on the other.

  • Easiest to obtain: Align, in many pharmacies and on Amazon (98 capsules ~ $70 is best buy) – B. infantis 35624 ONLY; IBS effective, see my earlier post.
  • Prescript-Assist: on  Amazon (90 capsules ~ $60 is best buy) – 28 species, none are Lactobacillus. IBS effective. See my earlier post.

Because of the low B-12 levels, L. Reuteri also appears to be a good choice as explained in this post. I suspect/speculate that it can be taken with the above without significant loss of effectiveness. See this post on how to take it. Sources:

  • BioGala Protestic: on Amazon (30 sticks for $27) –  Lactobacillus reuteri Protectis ONLY . From Sweden
  • Jarrow Fem-Dophilus: on Amazon (120 capsules for $52) –  Lactobacillus rhamnosus, GR-1® and Lactobacillus reuteri, RC-14 ONLY . From Denmark

Needless to say for old timers — changes of probiotics should occur on Fridays in case “die-off” happens from the battle betwen probiotics and the bad bacteria. Starting at a low dosage (sprinkling 1/2 capsule on yogurt for the first day) is also suggested to allow the war between bacteria to be more tolerable. Of course, we cannot predict if there will be a war.

Unknown's avatar lassesen 8:10 pm on September 29, 2013  

An explanation of why higher dosages of probiotics may be bad

There are several studies where the experimenters tried various dosages of probiotics. The results were interesting because as the dosage increase, there was more intended effect and then suddenly the effect dropped off to almost zero (that is, the probiotics had ZERO effect).

This is important because many CFS people slip into a mentality of “more is better”, and literally overdose on one or more supplements. For probiotics, more is likely not better. Taking 50% more is likely fine, but 100%, 200% or 500% more is likely just throwing money away (of course, we know that all CFS patients are flush with too much money).

I believe a simple explanation of the mechanism that bacteria (probiotics) use may explain the process better.  Probiotics generate a host of chemicals.

  • Some of these chemicals are “purchase orders” to other bacteria to produce more (often these are different species that have learnt to work together).
  • Other chemicals are produced to say “I’m here” to other of the same species.  When this level is low, the bacteria will go into over production (high birth rate). When this level is high, the bacteria will slow or shut down production (low birth rate, or none).

When a large dosage of probiotic is consumed, none of these chemicals may be there and everyone starts reproducing… 15 minutes later, the system is flooded with the chemical and everyone stops reproducing. The bacteria/probiotics effectively triggers it’s own kill switch.

The microbiome is a complex economy. Cooperation happens by chemical signals and the level of the chemicals found. My advise is simple:

  • One probiotic at a time. Preferably a single species when possible.
  •  Start with a low dosages and increase to the recommended. Do not exceed 50% of the recommended dosage.
  • Keep on each probiotics for at least 7 days (10 days is better, 14 days is likely the maximum time before rotating). This also keeps costs in control… and benefit/dollar higher.
  • Daily changing probiotics is likely not good. You are not giving time for colonies to get established.
Unknown's avatar lassesen 1:13 pm on September 27, 2013  

Personal Observations on Cognitive impact of some probiotics

I am currently doing a cycle of different species of probiotics and noted two had significant cognitive impact on me:

  • Align ( Bifidobacterium infantis 35624 ) resulted in a very noticeable shift to being a lot more relaxed and laid back, longer sleeps.
  • Mutaflor (E.Coli Nissle 1917) resulted in more energy, focus, shorter sleep.

As an aside, a friend was finally persuaded to take 20,000 IU/day of Vitamin D3, she reported within 5 days that she is sleeping a lot harder and not dealing with a tendency towards insomnia.

Just three random observations — your mileage may vary.

Unknown's avatar lassesen 5:02 am on September 20, 2013  

Fibromyalgia and Probiotics

Today I had lunch with a friend with Fibromyalgia(FM) brought on by antibiotics for pneumonia, or the pneumonia itself. It is really impossible to know which is the cause. He was interested in the probiotics approach, and I promise to summarize what we know (from PubMed) on fibromyalgia and probiotics.

What I found on PubMed.com was:

So the bottom line is that this approach has not been investigated for FM – except for a study against RA patients (but not against healthy controls). Doing general google searches found nothing that did not appear to be opinion based on belief.

With this sparse information, we end up looking back at irritable bowel syndrome (IBS), which has had probiotic studies. On PubMed there are 340+ studies where they are cited together.  This leads us to Prescript-Assist and Align as two probiotics that have been shown in studies to be successful. It should be noted that neither contains any Lactobacillus species.