Treatment: Where do I go from Here #1

A new reader emailed me and provided a very detailed medical history and asked for suggestions. The reader knows that the issue is in the gut very well, is well educated in health issues and have seen several of the leading medical authorities. Almost all treatments failed to have any positive results.

Reader Beware

Before I go through my analysis of the information and make proposals to discuss with their health professionals. I should clarify that I am not a MD, nor a health professional. My current job title is Principal Software Engineer for a rapidly growing company that has received over $140 million in venture capital over the last year or so. In the past I have held Senior software positions for both Amazon and Microsoft; I get regular ongoing contact from Google HR to join their team (which would be a trifecta for my curriculum vitae). I was in a gifted child program and started to read medical journals at 14 yo, My Master of Science in Commerce topic was actually analysis of treatment effectiveness for different conditions by emergency service My particular strengths are:

  • Modelling systems, especially reduction of complexities to get to a reduced core model. I need to do this often when triaging problems with software systems, I have recycled that skill looking at auto-immune issues.
  • Not getting overwhelmed by complexities – if anything, I like to work with “rich-complex issues”
  • A systematic logical, disciplined mind — expected from doing a Honors Mathematics undergrad program. Nit-picking is a trait, which can be good or bad (depending on the people that you are working with).

And yes, I have had Chronic Fatigue Syndrome three times and recovered each time. I know and remember the helplessness of having a condition with no known effective treatment. Today, I have a working model that appears to be effective for me, I am in remission and believe that I can stay there by minimizing the risk of relapse be selected probiotics, herbs and prioritizing the appropriate lifestyle and life-decisions.  It is not a matter of what I want to do, but what is good for me.

A special class of CFS Patients

With the model of CFS being rooted in a gut bacteria dysfunction, there are thee main paths that could result:

  • The dysfunction auto-corrects (about 5% of patients at 6 months, 4% of the reminder in the next 6 months, with decreasing odds onward)
  • The dysfunction become stable and the patient stays in a stable pattern that waxes and wanes
  • The dysfunction increases, perhaps ending with a diagnosis of Crohn’s or other inflammatory bowel diseases. Typically once those diagnosis are made, the patient no longer qualifies for a CFS diagnosis.

This reader is in this latter class that has seen continuous deterioration over the years. It is dealing with these out of control microbiome that this and subsequent posts are looking at. These suggests are unproven, they are suggestions arising out of my model that I am look at.

Short Summary of Significant Factors for Patient “M”(IMHO)

Skipping over the common symptoms and focusing on the more unusual ones:

  • Three Stool/Fecal Transplants — first one “worked” but only for a few weeks, subsequent transplants did not
  • Distinguished list of world-class CFS specialists seen, and recommendations followed
  • Have gone to the most severe form of CFS, effectively bed-ridden
  • “furry tongue” – “was very much a feature of my symptoms when i had fairly severe gut problems aged 16-19”

The classic starting point is always the simplest model that explains most of the history.

Preliminary Analysis

What appears to bubble up as a model from my analysis is that there is a reserve of the bad bacteria is in the mouth, or between the mouth and the stomach.  This is consistent with re-population of evil-bacteria after a fecal transplant, and the logical flow: bacteria move from the mouth to the gut and not the reverse.

There could be two things happening : the mouth bacteria issue may be independent and simply thrive on the chemicals that the gut bacteria pumps into the system. Keeping to the simplest model, we will assume the mouth bacteria has repeatedly recolonized the gut [Reference]

Furry Tongue is associated with constipation according to WebMd. High numbers of staphylococcus and streptococcus was found on “M” before the first fecal transplant and different analysis at different time produced different results. Recent studies have found a high variability of populations of a person microbiome according to the time of day — the assumption of the population being stable over days may be incorrect.

Logical Course

Postulate: The root cause is bacteria in the mouth, with staphylococcus and streptococcus being significant contributors/support for other evil bacteria. The reader may have to address both gut bacteria and mouth bacteria. In an earlier post, I raised the issue that for some people there may be a significant reserve of evil bacteria in the mouth and/or sinus region. This should be assumed here.

Attacking the reserves

There are two ways of fighting the evil bacteria:

  • killing them off by herbs, antibiotics, etc
  • displacing them with healthy bacteria

The preferred sequence appears to be kill and then re-settle with healthy bacteria when dealing with major dysfunctions of gut bacteria. The evil bacteria should be assumed to be “thugs” and the good bacteria being very polite and civilized. A heavy hand seems like the best course.

Reducing the Reserve

The ideal situation would be herbs, spices, teas that can be kept in the mouth for a while. There are a number of them that are known to be effective, including (listed according to my preference):

  • Tulsi
  • Haritaki
  • Neem
  • Tumeric [2013]
  • Ashwangandha

There are some 60+ articles available on Pub Med for herbs and staphylococcus,  and just 19 articles for herbs and streptococcus. Many of the herbs are used in traditional Asian medicine and may be easy to obtain in locations with large Asian populations (and a challenge elsewhere).

Making teas or heated drinks of the above may take a little creativity. If the source is coarse enough, teas may be easy to make (or ready as tea bags – unfortunately, often at a much higher cost), or by boiling (effectively making a water extract) and then pouring thru a paper coffee filter.

An old “medicine” Licorice

As I am writing this, I am dealing with a sore throat and sucking away of Spezzata, a form of licorice. It seems to be a natural suggestion here, as this early post describes its action.This form is slowly dissolved in the mouth and thus saturates it.

Another old “medicine” Altoids

Altoids second ingredient is acacia gum a.k.a  gum arabic (right after the sugar 🙁 ). This is very much in agreement with it’s intent in 1780, by Smith Kendon, founder of Smith & Co., developed an exceptionally strong lozenge known as Altoids® mints, originally marketed to relieve intestinal discomfort, let alone a remedy for bad breath. Almost none of the newer equivalent products have gum arabic in it.

  • “The action of acacia gum against suspected periodontal pathogens and their enzymes suggests that it may be of clinical value.”[1993]
  • “Ten grams of gum arabic may produce a prebiotic effect in humans by boosting gut populations of specific bacteria”[2008]

On the down side, the EU Study group deem any impact has not been proven sufficiently[2002]. For a more recent review see this [2009] review.

Oral Probiotics

There are now available an increasing number of oral probiotics

  • Now Foods OralBiotic on Amazon (60 capsule for $14) – Streptococcus salivarius BLIS K12
  • Oragenics Evora Plus Probiotic on Amazon (30 mints for $16) – Streptococcus oralis, Streptococcus uberis, and Streptococcus rattus
  • Swanson Oral Probiotic: Blis K12® S. salivarius, L. rhamnosus, L. plantarum, L. reuteri, L. paracasei, L. salivarius
    • This one was a delight to find because it contains L.Reuteri which is hard to find in a probiotic. This one looks the most promising of all of the Oral Probiotics.

In terms of species available in these, they include:

  • Streptococcus salivarius BLIS K12
  • Streptococcus oralis
  • Streptococcus uberis
  • Streptococcus rattus
  • Streptococcus salivarius
  • Lactobacilus. rhamnosus,
  • Lactobacilus plantarum,
  • Lactobacilus reuteri,
  • Lactobacilus paracasei,
  • Lactobacilus salivarius

Taking the Herbs

The longer that the spices are in the mouth, the more bacteria should be reduced. There is a gotcha, the bacteria defends itself with biofilms so doing an oral mouth rinse of biofilm breakers such as EDTA and NAC should be part of the treatment(See this earlier post). Since these are both consumable, they could be added to teas described below (assuming the taste is not too bad!). Some teas are know to be effective (Ginger and Tulsi teas I like,  Garlic tea would be an experience!)

  • Ginger tea and Garlic tea – based on [2015] results for mouth bacteria.
  • Tulsi tea – demonstrated as an effective mouth wash [2014], and appear very effective [2014] [2011]

The above is intended to reduce the reserves, the items below can/should also be taken as capsules to address the gut bacteria.

Cost Savings

I usually advocate buying herbs such as Tulsi, Neem, Haritaki, Turmeric in bulk (typically $10-$20/lb) and making your own capsules. It is one way you can get certified organic supplements 🙂 at a very reasonable cost . The cost difference per capsule can be as high as 20x — which makes a huge difference for the budget.

In the above case, one could follow a similar pattern (instead of buying tea bags):

  • If the grind/herb is coarse enough, make tea in the old, pre-tea-bag method.
  • If the grind is too fine – consider getting coffee filters or reusable tea bags [Example, Amazon.Uk]

Is it working?

This is always the greatest challenge with any supplement — how to determine if it is effective, especially when it has a slow mechanism of action. For example, Vitamin D supplements may have no noticeable effects for months. We could hope to see a change of the fuzzy tongue. perhaps by taking “selfies” of the tongue daily (ideally with the same light conditions).

Bottom Line

Whether the mouth is really the reserve or not is immaterial with the targeting of the mouth above — whatever goes into the mouth, ends up in the gut! In my next post, I will explore a much more aggressive approach — taking off the boxing gloves of assuming only a CFS style of bacteria shift.