lassesen 12:02 am on May 24, 2015

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.

Kanon Kubose 4:51 am on May 24, 2015

I’ve been working on my gut for 2.5 years now, following your suggestions of herbs (neem, tulsi, etc) and probiotics, plus MMS and the GAPS diet). I’ve recently begun seeing Dr. Patel, a CFS specialist in Redwood City, CA, and he confirmed gut inflammation after palpating my abdomen. How could this be? I wondered, given 2.5 years of strict GAPS diet and all the other work I’ve been doing? I didn’t even have many gut symptoms to begin with, just going to the gut theory of CFS because other things weren’t working (adrenal, methylation, mitochondrial, etc.).

His answer was that until Lyme and other chronic infections are dealt with, the gut simply cannot heal. Have you ever heard of this?

I remember that you also used antibiotics, so maybe this was the key that enabled your gut protocol to work for you when it hasn’t for me?

Patient “M”, have you looked into the Lyme (and other chronic infections, like Cecile Jadin’s theory about Rickettsia) treatments?

I’ll keep you all posted about this new angle I’ve discovered in the gut approach, but I’m very interested in others’ experience and thoughts as well.
- lassesen 7:35 pm on May 24, 2015
  
  In today’s post, I look at a key decision maker on route to take: Whether there is high E.Coli, especially unhealthy E.Coli. If this is the case, then the herbs, etc are different (depending on their impact on E.Coli)
  - Kanon Kubose 1:49 am on May 25, 2015
    
    I’m pretty sure I’m in the low E.Coli case. (A rather old test showed it, and I have CFS.) Thus, I used neem, tulsi, etc. I suppose I could try other herbs or get my biome tested, but mostly I’m curious as to your thoughts about what my doctor said, that gut issues won’t get better while chronic Lyme, etc. is going on?
    - lassesen 3:10 am on May 25, 2015
      
      My conclusion for “chronic Lyme”, “chronic EBV” and several other conditions where the test for the infection is negative after treatment but the symptoms do not clear is that symptoms are a result of gut bacteria changing due to the original infection and this shift did not revert after the infection was reverted.
      
      Modern MD’s do not seem to have grasp that the symptoms are often due to bacteria shifts caused by the infection and not the infection itself.
      
      For the 3rd time around, the physician wanted to test for “persistent Lyme” and based on those results, I got long term antibiotics. They were thus justified in giving such prescriptions. We sat down and discuss it, the physician was happy to use the Jadin protocol because it contained what could be given for Lyme.
      
      Bottom line: If they want to test for Lyme, don’t fight them — the reward for humoring them are antibiotics that they would not be willing to prescribe otherwise.
      
      She got the results that match her beliefs. I got the antibiotics that matched my beliefs. We technically disagreed — but was it worth challenging her beliefs??? absolutely not!
      - Kanon Kubose 3:30 am on May 25, 2015
        
        I see. It sounds like what we’ve got is a chicken and egg situation. Did the Jadin antibiotics help because they got rid of the Lyme (or whatever) infection which allowed the gut to heal (my doctor’s belief) or the antibiotics helped the gut heal directly (by shifting the ecology to allow good bacteria to re-establish–your belief). The cases where the test for Lyme, etc. are negative but CFS persists until the gut shifts is certainly evidence in favor of your theory.
        
        Well, either way, I’ll likely be getting them, and hopefully they’ll help.
        
        lassesen 3:57 am on May 25, 2015
        
        There is really no way to tell — we are introducing something to a very complex interactive system which we really do not understand (or even know all of the components of, little more they actual function).
        
        In my research, I have often see an item advocated for A-B-C. Because it appear to work, I then research the item for impact on coagulation, gut bacteria etc. In some cases, I discovered that it would work for some and not for others (base on factors such as type of coagulation defect), or may have an adverse impact on a co-morbid condition that some patients have.
        
        The key is to take items with the least risk of adverse effects (given that we may not know how to definitively test for – or persuade a MD to rest for).
melamine 4:38 pm on May 24, 2015

Kanon, every CFS doctor has their own particular approach to addressing it and my feeling is that when searching for such a specialist, it’s best to determine which approach you are comfortable with, and who looks like they can best provide it.

Ken, I have been meaning to respond to a number of your posts before this one caught my eye. I have a lot of experience with periodontal disease that first developed acutely during a botched root canal, at which time my health was already in a downward spiral. I should preface by saying that I had had post-viral/ post-encephalitis CFS for several decades by that time, which had moved in and out of stable improvement during two brief periods, the last ending about 8 years prior.

During the two stages of the root canal, a large, deep pocket of rapidly progressing periodontitis began forming around the tooth and an adjacent one, causing gum and then bone loss at a phenomenal rate (days and weeks, not months). The endodontists and then periodontists I consulted pretended everything was normal, even while my PCP said it looked like “rotting flesh” and my (new) regular dentist acknowledged there was a problem. The last professional I consulted was a “biological”/conventional dentist, whose very expensive conventional perio. treatment had no impact even during a period of very active disease. In addition to the botched rc tooth, I eventually lost the once healthy adjacent one as a result of the amount of gum and bone loss, and sustained root exposure to others for the same reason. During the few years leading up to that I had noticed a slow, general gum recession that did not correspond to my oral care or clean dental check-ups.

About 6 months before the periodontal infections began, I had finished consecutive courses of Amoxacillin and Augmentin for a total of about 5-6 weeks, prescribed without testing for a severe upper respiratory infection that was also affecting cardiopulmonary function and my overall health. Severe malaise and other symptoms dragged on for months, misdiagnosed and otherwise untreated. The antibiotics had had zero effect and I was left even more weakened, with a new set of chronic symptoms thereafter. My breath was horrendous even when my teeth and gums were diagnosed as perfectly “healthy.” It was obvious to me that the odor was coming from my nasal and sinus regions, but nothing seemed to help much, although Neti rinsing helped minimally for awhile.

About a year after the bad periodontal infections began, still coping with old and newly festering ones, I tried a Ganeden probiotic that was the single species B. Coagulans and they began resolving almost immediately and continued to heal in a way that seemed almost miraculous by that time.

Unfortunately, when the aggressive periodontal infections returned several months later (I did not continue with the probiotic after finishing the first box), it failed to work the second time. I may have tried other probiotics but don’t remember. I probably tried higher doses but maybe not high enough, or by that time I needed something more broad spectrum. It was a period of chronic distress caused by serial doctor and dentist misdiagnoses, abuse and neglect, which no doubt contributed to disease activity and failure of the treatment that had previously been helpful. I developed autoimmune signs over the next few years, as well as immune deficiency with hyper-IgM.

For about 6 months before the upper respiratory infection, I had been experiencing an intense and unnatural itching inside my nose that I believe was bacterial or fungal in nature because it was clearly not caused by any physical irritant. I believe the severe infection was viral, but allowed bacterial and fungal infections to proliferate. (Later tests showed high/chronic level titers for EBV, all coxsacki Bs, adenovirus, and Candida albicans)

I have used both Jarrow and Swanson oral probiotics. What I’ve been using regularly with most success is a liquid called P2 Probiotic Power that’s mixed in a little water and recommended to be used twice a day. It’s called oral rinse but I swallow it after swishing for awhile and also sometimes tip my head upside down to try to get a little into the pharyngeal region, where I still have chronic symptoms. What I’ve noticed is that my mouth tends to feel cleaner, heavily coated tongue is much better, and thick green nasal and post-nasal discharge is maybe 50% better.

I don’t ordinarily like using products that don’t tell me what is in them but having felt some success with this one, I plan on continuing with it. I think it’s good however to switch off varieties from time to time and would like to try the one with strep species in particular.

I am also using prebiotics and a number of other probiotics, including several that you have recommended. The newest one I’m trying is an enteric coated premium Vitamin Shoppe brand that I selected because of its very high bifido count relative to lacto species (72 billion: 8 billion), which I have found nowhere else. When some of my symptoms took another dramatic turn for the worse last year following dental surgery, one of the things I needed to consider was the probiotics I had started using and maybe more specifically, increased use of probiotic foods (lots of kimchi, in particular). There were at least two other contenders for cause or co-cause, so that is an issue that will have to remain unresolved for the time being.
- lassesen 7:41 pm on May 24, 2015
  
  Many thanks for sharing! If something is working, then we need to at least keep it in a rotation. Probiotics produce antibiotics — and thus have the same issue as prescription antibiotics: bacteria can produce resistance to them.
- Kanon Kubose 1:50 am on May 25, 2015
  
  Thanks for the reply. What do you think of the idea that gut issues won’t heal when there are chronic infections (like Lyme)?
  - lassesen 3:26 am on May 25, 2015
    
    The treatment for the chronic infections will typically also alter the gut bacteria. The path that you, I or the MD believe we are walking on may be different, but if it results in the same or similar list of items to take, AND results in remission, do we really care about who is “right”?
    - Kanon Kubose 3:33 am on May 25, 2015
      
      That is correct. I’d be happy simply to be well, but it’d still be nice to know what’s going on in order to advance human knowledge and perhaps lead to even better treatments for those who follow.
    - melamine 4:34 am on May 25, 2015
      
      I agree.
  - melamine 3:55 am on May 25, 2015
    
    Kanon, I don’t have an educated opinion about it particularly, other than to say the matter is not settled and is a chicken or egg thing among doctors, IMO, among other approaches. If you feel uncertain, my suggestion would be to research the issues to help clarify what makes the most sense to you.
    
    I could be wrong but the thing I do have an opinion about is that I believe Lyme is way over-diagnosed and too often assumed by those diagnosed with it to be the universal malady. I also don’t see a lot of success with infectious approaches to CFS in general, whereas GI optimization and balancing makes a lot more sense to me now, not exclusively, but as a foundation at least.
    
    Thinking beyond the obvious infectious cause of my CFS, in retrospect some curious symptoms I had experienced about 8 years prior seem like they might have laid the groundwork for it: In my senior year in high school I had developed such extremely uncomfortable upper GI symptoms that I was no longer able to concentrate in school, and my good grades plummeted to the point that I had to drop out for at least a year. I can only speculate as to the cause, but less than optimal diet, stress, dental mercury and antibiotics were all potential players. For that reason and the course of symptoms that developed much later, I’m more inclined to believe that infections are something of a downstream effect.
    
    Although it strikes me as counter-intuitive to not address gut health at the same time as anything else, I don’t know enough about Lyme or the doctor’s reason for practicing as he does.
Danielle 5:44 pm on May 24, 2015

How about oil pulling (swishing a small amount of coconut or other oil around the mouth for about 20mins) with small amounts of the herbs? Might that be effective?
- lassesen 7:44 pm on May 24, 2015
  
  I assume that coconut oil is high in monolaurin, and it is effective against some bacteria, http://www.ncbi.nlm.nih.gov/pubmed/23077821
  
  Thank you for the suggestion, it’s a good one!
Nita Jain 5:47 pm on September 25, 2018

Reblogged this on AUG Codon: New Beginnings and commented:

Comments and criticisms:
(1) Bacterial migration IS bi-directional: gut health impacts oral health (I developed horrible plaques after FMT)
(2) Problem-causing bacteria are NOT thugs. Simply a matter of checks and balances gone awry, as is the case in C. difficile infection. Competition imparts stability to an ecological community
(3) Failure for FMT to work in the long-term (temporary relief only) may be due to other factors such as insufficient secretory IgA production, as sIgA not only protects against pathogens but also provides a scaffolding platform for beneficial commensals.
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