These words are the beginning of a classic CFS joke. The good news is “You are not going to die”, the bad news is “You are not going to die”.

There are two diseases that can present almost identically, both have no diagnostic tests, both have SNP associated with incidence (SNP means a gene mutation). I have been unable to find out if any of the SNPs overlapped… The two conditions are Alzheimer’s Disease(AD) and Chronic Fatigue Syndrome(CFS).

The easiest way to tell them apart is the presence of post-external-fatigue (PEM). Unfortunately, PEM is not always present and actually forms a research subset. So, for CFS patients without PEM, there can be a bit of an unresolved question. CFS is characterized by a 1% decrease in gray matter volume per year of the disease, as well as decreasing white matter volume. Similar are seen in AD.

SPECT Scans

The interesting thing is that AD, CFS and chronic lyme all show hypo-perfusion in the same areas of the brain. With chronic lyme, the right course of antibiotics results in SPECT becoming normal in 1-2 years according to PubMed studies.  The term right is very significant because it is not just a single antibiotic but several. My KISS model is that the SPECT results originates from gut bacteria dysfunction. The use of the right antibiotics would correct (or at least ameliorate) this. This would be in keeping this Philipe Bottero who found that many patients in psychiatric hospitals recovered fully when given the rotating antibiotics protocol for Rickettsia.

My interesting speculation is whether the progress of AD is significantly determined by gut bacteria dysfunction. I have been unable to find any studies on gut bacteria in AD.  Without such information, antibiotics are as likely to worsen instead of improve.

Life Expectancy

To return to the humor (or attempt there of), the other difference between CFS and AD is life expectancy.  AD has a greatly reduced life expectancy, CFS may have a slightly reduced life expectancy. If you are alive 10 years after onset, you likely have CFS and not AD.

This Christmas I sent a care package of various supplements to a CFS friend that is on SSI and having been having increasing problems. He is interested in my gut-bacteria model of CFS as well as needing neurological improvement.

Before sending the pills, I told him that he must run them past his medical professional before starting. There are always drug interactions etc. that are risks…

Often medical professional have no idea of what sequence to add various pills in. I tend to keep to the “no more than one new item every day (or even three days)” philosophy.  To assist his medical professional, I put together the sequence that seems to make the most sense (and why) below. It may be of interest to other readers’ discussions with their medical professionals. The goal is to have high risk of herx items later in the list and items likely to reduce inflammation (degree of herx) earlier in the list. The intent is not to send him to a herx-hell too fast!

4Olive Leaf ExtractProtects brain, will impact some gut bacteria

Notes:

• For chlorine tablets, after mixing 1 tablet in 1 qt of water, allow it to rest in a dark cupboard for 30 minutes. Keep it in a dark cupboard so minimize the breakdown.
• The ideal on day 13 or after a 7-10 pulse has ended, would be the addition of Mutaflor, Lacobacillus Reuteri, etc

I expect him to have a good headache and other signs of herx as he goes through the list (after approval by medical professional). When a herx starts, it is often best to stop adding more stuff until the herx ebbs (usually 4-7 days). If the herx gets too severe, stop the last item and wait 4 days before starting the next item. Often the herx will be a lot less severe on a second round/pulse.

My earlier post on Crohn’s Disease(CD) had some feedback asking for more herbs that are effective against Escherichia coli. This is not what a CFS patient want to use – their E.Coli levels are very low. This feedback was coming from Crohn’s patients because they could not tolerate some of the herbs. A person with Crohn’s that tried Mutaflor – Escherichia coli Nissle 1917 – (up to 3 capsules/day) reports much better symptoms and greater food tolerance since starting the Mutaflor. The Mutaflor replaces some of the bad E.Coli, but does not appear to be able to eliminate all of them.  For some people, several weeks or months of Mutaflor may be needed before trying/tolerating the herbs. Sorry, no overnight cures.

The key for this approach is simple:

We want to nuke the invasive strains and immediately repopulate with Mutaflor.

The following table should be helpful. I have ignored the extract method, I will leave that to advance herbalists. Some may require a visit to an oriental herbalist to obtain. All of these should be reviewed by a knowledgeable medical professional before starting.

It should be noted that resistance to herbs have been reported by repeat use [Study], thus two weeks on two followed by a different pair may be a good approach. Taking one capsule of Mutaflor (separated by 12 hours) may be beneficial. E.Coli is viewed as the most resistive of all bacteria [Study].  Less than 10% of herbs and spices will impact E.Coli – so make sure there is a study supporting the use of any herb, and not personal opinion. Because a herb work for a different bacteria, does not mean it will work for E.Coli.

This Christmas I sent a care package of various supplements to a CFS friend that is on SSI and having been having increasing problems. He is interested in my gut-bacteria model of CFS as well as needing neurological improvement.

Before sending the pills, I told him that he must run them past his medical professional before starting. There are always drug interactions etc. that are risks…

Often medical professional have no idea of what sequence to add various pills in. I tend to keep to the “no more than one new item every day (or even three days)” philosophy.  To assist his medical professional, I put together the sequence that seems to make the most sense (and why) below. It may be of interest to other readers’ discussions with their medical professionals. The goal is to have high risk of herx items later in the list and items likely to reduce inflammation (degree of herx) earlier in the list.

I expect him to have a good headache and other signs of herx as he goes through the list (after approval by medical professional). When that happens, it is often best to stop adding more stuff until the herx ebbs.

I came across an article in New Scientist (22/29 December 2012, p.13) today dealing with the relationship of weight gain and Enterobacteria.  A 175 kilo patient dropped 51 kg by going on a special diet. Before the diet, Enterobacteria was 35% of the gut bacteria, after the diet, undetectable (Enterobacteriaceae went from 13% to 0.3%). The full article is here [PubMed].  When this bacteria (Enterobacter cloacae B29) was added to germ-free mice, “the expression of the tumor necrosis factor-alpha, interleukin-1β, interleukin-6, I kappa B kinase epsilon and Toll-like receptor 4 pro-inflammatory genes increased significantly” – in other words, CFS-like inflammation. The interesting aspect is that with CFS, patients either go rail thin, or beach-ball round over time regardless of calorie intake.

This bacteria is resistant to many antibiotics[PubMed] with ciprofloxacin appearing to be the most effective.

I found one study of unripe papaya being effective against Enterobacter cloacae. Other studies (items are not easily obtained)

• Mitracarpus frigidus – Moderate
• Moringa peregrina
• Blumea balsamifera – sambong or bukadkad
• Dortenia picta
• Bridelia micrantha – Mitzeeri or Coastal Golden-leaf,
• Helichrysum pedunculatum
• Cylicodiscus gabunensis (Mimosaceae).

I was unable to find any easy to obtain herbs that are documented to be effective (I have written the authors of the above article for details on the traditional Chinese medicinal foods that were used).

No Bananas Please!

I found an interesting study where both the peel and the pulp of bananas increased the growth of ” Escherichia coli O157:H7, Shigella flexneri, Enterobacter cloacae and Salmonella typhimurium, as well as two non-pathogenic E. coli strains”.

The exception is if you are a skinny as a rail CFS patient, then you want to encourage E.Coli…

This study found norepinephrine(a usual stress produced chemical) also appears to encourage Enterobacter cloacae. Hence weight gain as a result of stress may be bacterial in origin.

More reading..

•  Enterobacter cloacae on MicrobeWiki
• Occurrence of Virulence-Associated Properties in Enterobacter cloacae – “in patients receiving antibiotic therapy, E. cloacae strains may be selected and may excessively grow in the gastrointestinal tract.”