Having fully recovered three times over 40 years: the first time due to misdiagnosis that resulted in appropriate treatment (before CFS or Lyme existed); the second time due to a treatment approach that claimed 75+% recovery (and 3 of the 4 of us did recover!). This last time due to an approach of what CFS may be that is likely far closer than prior models.

The question of whether I had CFS is really moot this time, SPECT scans were abnormal in the manner the chronic Lyme and CFS are; Vitamin 1,25D was sky high – seen with FM, CFS, and many autoimmune disease (and returned to normal due to treatment).

The model is simple to describe — but difficult to create a “simple” treatment plan for because the key factors are inherited (not in your DNA but in you gut bacteria DNA). CFS is a stable gut bacteria dysfunction that impacts metabolites (B12, magnesium, and possible bad stuff etc) that are produced by the gut bacteria.

Contrary to urban myth, antibiotics do not kill ALL of your gut bacteria, only selected species (depending on which antibiotics). Conventional probiotics usually contain species that will out compete or impact(by producing their own natural antibiotics) a few other species. The typical example is Lactobacillus Acidophilus reducing E.Coli populations.

Gut bacteria tests only covers a handful of species and rarely identify if the species that are there are good or bad. Auzzie studies did find a common pattern (Low E.Coli, High levels for a half dozen other species).

Treatment will often make you sicker for a while, typically 7-14 days before any improvement. Sometimes, massively sick with extremely nasty headaches.

My latest recovery illustrated to me that addressing specific species shifts (killing or supplementing) impacts subsets of symptoms. Dry eye, dry mouth disappear with E.Coli supplementation. Cognitive improvement increased greatly within 10 days by killing other species off with Neem and Tulsi at 3 gms/day.

The real problem is that each of us has about 150 species out of 1500 “good bacteria” species when we are healthy. Effectively, they are as unique as finger prints! When CFS hits, the species shift is unique (hence the unique symptoms). Even if we knew the exact species shift, treating that shift is complex. The herb haritaki kills some of the high species, but also kills some of the low species (and normal species). The same applies to all of the antibiotics and herbs.

I targeted the low species by finding the right supplemental probiotics (not easy to obtain) and searching through hundreds of antibiotics and antibiotic-like herbs to find ones that had the right profile for those species that were high but did not severely impact the low species.

My game plan was derived from:
http://www.ahmf.org/98access/98butt3.html

So the problems for recovery are:

• Herx /feeling sicker for a while
• Not being able to tell if there is an improvement (forgetting how you were!) — I test myself with Wii Fit every day. When I herx, test performance drops badly then it returns to normal
• Getting the RIGHT probiotics needed (cost, and for the most critical one, having the hassle of having to import it into the US because the FDA deems it to be a drug!)
• Getting the antibiotics Or natural herbs/spices that are antibiotic like (MD issues for the first, ND issues for the second — my ND, who is a specialist for CFS, did not have that knowledge when I started).

Will I get CFS? Again, given what it is, it is possible. At the first signs of it, I do have a varied supply of supplements on hand that may stop it from becoming established….

Best to you all!

Ken

This week’s Economist had another article dealing with the microbiome (gut bacteria, microflora), “Sniffing out hypertension Gut bacteria help regulate blood pressure“. A major drop in blood pressure (often with dizziness and other symptoms) is common in CFS – but the mechanism for this happening has been unclear. On the other side, there is an increasing problem with high blood pressure in society.
There are two proteins that may be produced Olfr78, and Gpr41. The presence (or absence) impacts how the body responded to metabolites produced by the microbione.

• ” in normal, healthy mice propionic acid regulates this process, causing blood pressure to drop.”
• “the blood pressure of those in which Olfr78 had been reduced, dropped more than it did in normal mice.”
• “reducing Gpr41, by contrast, blood pressure did not fall at all.”
• “she treated some mice with an antibiotic, to kill off their gut bacteria. Mice so treated that had no gene for Olfr78 showed a significant rise in blood pressure. Those that were genetically normal did not.”

While this does not confirm the role of gut bacteria dysfunction in CFS causing low blood pressure and other symptoms — it does suggest that this may be a viable mechanism.

Today I had a conversation with an old friend and he asked if I had any insight to cystic fibrosis from my readings. I had to say no — but stated that it would be worthwhile to examine whatever research may apply.

Cystic fibrosis is a genetic disorder, so the initial assumption would be that it had nothing to do with the microbiota. From my readings, both the DNA of the body and the DNA of the bacteria that inhabits the body are inherited — so there is a possibility that it may take a double inheritance to cause the condition to develop fully. While altering the microbiota may not stop or prevent the disease — it may have an impact of the rate of progression or side-effects — this is the hypothesis that I am exploring in this post.

As a starting point in this 2010 article,Comparing the microbiota of the cystic fibrosis lung and human gut which states “the typically mutually beneficial relationships usually found in the GI tract from the injurious relationships in the CF lung.” This is a familiar situation of the disease altering the microbiotia, with the microbiotia then supporting the disease. This was  illustrated in the diagram below.

For CF, this is reported in this 2004 article, Intestinal inflammation is a frequent feature of cystic fibrosis and is reduced by probiotic administration

The authors go on to say, “demonstrated that pathogenically important behaviors of Pseudomonas aeruginosa can be impacted by the presence of bacterial species that are routinely disregarded by most treating clinicians.” In terms of the general relationship (not CF specific), “association between changes in the composition of gut microbes and changes in the normal functioning of the nervous system” speaks to the neurological issues seen with the shift of the microbiota seen with Chronic Fatigue Syndrome.

The article does a nice discussion of some of the issues and ends with “The challenge that remains for the study both of chronic infections affecting CF airways and of gut microbiota is to construct theoretical frameworks in which the implications of these data can be understood.” – in other words, we have a concept but not sufficient evidence to suggest a study supported therapy.

Other Studies

Almost all of the studies raised the question that it is unclear if the effect is due to reduce inflammation because of the probiotics or because it inhibited the CF process.

• Lactobacillus Rhamnosus was found to improve CF patients [2010] [2007] [2008] [2004]
• A non-CF study finding that Lactobacillus casei reduces Pseudomonas aeruginosa [2001]
• Azithromycin and other antibiotics improves CF patients [2003] [2011]
  • The issue is always whether it is because they alter gut bacteria, or impact the other infections seen in CF.

What I would love to see is a well designed study done of CF patients with the two commercially available (and unusual) probiotics:

• Mutaflor (E.Coli Nissle 1917)
• Prescript Assist (mixture of 29 non-Lactobacillus species)

This post does not deal with Chronic Fatigue Syndrome alone, but also deals with any disease that impacts the mind – for example, Parkinson’s, Alzheimer’s, Dementia, Multiple Sclerosis etc. If there are neurological issues occurring, the items below may help.

Minocycline

Minocycline  is usually thought to be an antibiotic, or perhaps an anti-inflammatory. Often it is mis-assumed that anti-inflammatory means neuroprotective. This is incorrect. There are a variety of reasons and mechanisms involved, but that’s an academic topic. This 2010 abstract summarizes it nicely:

ABSTRACT

Minocycline is a clinically available antibiotic and anti-inflammatory drug that also demonstrates neuroprotective properties in a variety of experimental models of neurological diseases. There have thus far been more than 300 publications on minocycline neuroprotection, including a growing number of human studies. Our objective is to critically review the biological basis and translational potential of this action of minocycline on the nervous system. [ 2010 Prospects for minocycline neuroprotection]

The full text is available here. The conclusion state:
“Studies to date have clearly established that minocycline exerts neuroprotective effects but have also shown that the actions of this drug are complex, and that its administration can, under certain circumstances, also have neurotoxic consequences. More studies, both clinical and preclinical, and both combinatorial and sequential strategies, should be carried out to ascertain the therapeutic window and the indications for which minocycline could be useful, effective, and safe.”

Doxycycline (a member of the same family) is also reported as a neuroprotective [*], as is Rifampicin [*], Rapamycin, Ceftriaxone, Beta-lactam antibiotics. All of these require a prescription and judgement of risk versus benefit.

Food Derived Neuroprotection

There are several herbs, spices, etc that can be described as” nutraceuticals derived from such spices as turmeric, red pepper, black pepper, licorice, clove, ginger, garlic, coriander, and cinnamon target inflammatory pathways, thereby may prevent neurodegenerative diseases” 2011, Neuroprotection by spice-derived nutraceuticals: you are what you eat! (Full text is here)

Many of those listed above, have been a regular part of my past treatment for CFS, with significant impact from each, especially licorice and turmeric (with black pepper).

Turmeric

Turmeric (Curcumin) is a common kitchen herb that has 60+ articles describing it’s impact. With a reasonable summary in this 2012 article: Multiple antidepressant potential modes of action of curcumin: a review of its anti-inflammatory, monoaminergic, antioxidant, immune-modulating and neuroprotective effects.

Ginger

Ginger is another kitchen spice with only 15 studies.

Other Non-Prescription Neuroprotection

In general I will point to a sample study on PubMed. If you know of others with backing PubMed studies, please add a comment (with link to an article)

Piracetam

Piracetam was easily available over the internet and has recently disappear from sites like Amazon, although some smaller sites still sells it.  It is prescription is some parts of Europe. There are over 200 articles describing it. For example, this 2012 article, Piracetam and vinpocetine ameliorate rotenone-induced Parkinsonism in rats.

Olive Leaf Extract

Olive Leaf Extract has only 5 studies, mainly dealing with stroke, for example: 2012 The neuroprotection effect of pretreatment with olive leaf extract on brain lipidomics in rat stroke model.

Alpha-Lipoic Acid

Neuroprotection of lipoic acid treatment promotes angiogenesis and reduces the glial scar formation after brain injury.

Ashwagandha

Attenuation of oxidative damage-associated cognitive decline by Withania somnifera in rat model of streptozotocin-induced cognitive impairment.

Boswellia

Incensole acetate: a novel neuroprotective agent isolated from Boswellia carterii.

D-Ribose

This sugar was recently found to help CFS, it’s neuroprotective aspect may be part of the positive response. A sample study, D-ribose improves cardiac contractility and hemodynamics, and reduces expression of c-fos in the hippocampus during sustained slow ventricular tachycardia in rats.

Neem

Deoxygedunin, a natural product with potent neurotrophic activity in mice.

Tulsi

The science behind sacredness of Tulsi (Ocimum sanctum Linn.).

 Remember Each have different mechanisms and other effects!

Antibiotics will usually impact gut bacteria (for better or for the worst) and may have other side effects. The same applies to many of the other items, like Olive Leaf Extract and Licorice.

Consult with your knowledgeable medical professional always