If you read my earlier post,  An Experience resolving hypersomnia and unrefreshing sleep you will know that I slipped out of remission for myalgic Encephalomyelitis/chronic fatigue syndrome. I was a “light” relapse which I have been fortunate in keeping short by being aggressive using my model.

One of the last symptoms has been night sweats. My body will sweat and overheat that it woke me mid-sleep and I needed to remove all blankets etc.

One of my reader posted that he had them too, but by following the methylation protocols developed by dear departed friend, Rich Van Konynenburg  they stopped after 2 months.

Some postings about Rich’s work:

• From Dr. Myhill, CFS – The Methylation Cycle
• Phoenix Rising: Augmenting Glutathione

As happenstance should happen, I tried a simple experiment boosting Vitamin B intake, namely what I happen to have on hand:

• Niacin (regular – flushing) to 1500 mg/day — important to have lab tests  to verify you can handle that much.
• Vitamin B1  1200 mg/day

Fortunately, I had a complete lab workup done recently, and had gotten MD permission in the past.

Why increase B-vitamins, well, methylation protocols use methylated B-Vitamins AND I had recently started to notice B vitamins showing up more and more in my suggestions.

Vitamin B1 Impact

http://microbiomeprescription.com/Library/Modifier?mid1=51

Genus and strains are also listed on that link.

Niacin Impact

http://microbiomeprescription.com/Library/Modifier?mid1=56

Genus and strains are also listed on that link.

Outcomes

Within a day, the severity of the night sweats decreased. Today, just a few days later, I awoke with none and an uninterrupted sleep. I do have to endure a few niacin flushes but that is fine given the consequences. Since this appears to be a microbiome shift that is being corrected, I intend to keep on these vitamins for 3 more weeks.

Some visuals from my Pebble watch

A surprise that B-Vitamins in sufficient dosage could be an effective microbiome modifier (antibiotic effectively).

Note: I have been told my medical professional that lab results should be good before taking these levels of B-vitamins. Please check with your medical professional.

This is an education post to facilitate discussing this approach with your medical professionals. It is not medical advice for the treatment of any medical condition. Always consult with your medical professional before doing any  changes of diet, supplements or activity. Some items cites may interfere with prescription medicines.

A reader wrote:

“I’m a fellow CFS person and I’ve spent the morning reading your excellent blog. You have an impressive ability to think through massively complex information!

• Irritable Bowel Syndrome
• Fibromyalgia
• Multiple chemical sensitivities
• Temporomandibular disorder
• Interstitial cystitis
• Postconcussion syndrome
• Tension headache

• Sleep disorders

• Depression
• Anxiety disorder
• Mood disorder
• Hashimoto’s Disease
• Sjögren’s Syndrome
• Lupus
• Orthostatic Intolerance and Postural Orthostatic Tachycardia Syndrome

There are many other autoimmune conditions which are looking more and more like a microbiome dysfunction is a major source of symptoms.

The simplest evidence that the root cause is a persistent microbiome dysfunction comes from dozen of reports of immediate remission from symptoms after a fecal matter transplant — unfortunately, many find that the symptoms returned in 2- 6 months. The bacteria consortium causing the symptoms were able to re-establish themselves. The unresolved challenge is how to stop this bacteria consortium.

High Level Process

Which Lab?

The analysis site will work with any lab results reporting on bacteria. The main difference is simple:

• Manual entry of perhaps 1-2 dozen bacteria (see non 16S lab tests for current supported tests). Often people have already had one done by their medical professional.
• Upload a file from a 16S lab report with 300-1200 bacteria detailed with actual counts. The two main players report similar results but with one difference:
  • uBiome is currently slow for turnaround to get your results back, but it is cheap (< $90)
  • thryve has recently come down considerably in price, now $99– with an alleged two week turn around
  • Your location in the world may be a factor (i.e. where they will ship to).
  • In Australia, there is a new testing firm: https://www.microba.com/

I am a statistician by  training and for part of my career. More data is better!

Treatment Pattern

Supplements: Vitamins and Minerals

If we assume that various good bacteria are diminished or gone, then the metabolites (chemicals) that they produce are no longer being produced in the same amount as before. The absence of these metabolites will cascade through the body systems. So the first item is usually supplementation with the chemicals (i.e. vitamins) that are diminished. For CFS, we have a pretty good idea because the typical decrease of bacteria seen and the vitamin supplements that help are a match up! For other conditions, there is much greater uncertainty.

My suggestion of thumb — if you are not at the median (50%ile) for a level, supplement to get up to the 50%ile — that is half the population have at least this level! There should be no clear risk of increasing to this level. 

• Your MD will likely say “no need, you are not deficient!”, Your response should be “Is there any known harm caused by increasing it to the average value?”

For items like Vitamin D, my personal goal is the 90%ile because the western population as a whole has been found to be deficient in vitamin D (so the lab norms are shifted low) — a consequence of not working outside like our ancestors did!

Bad Cop/Good Cop to the bacteria foes!

This is not quite correct, but it is a nice expression. The concept follow the Ricketessia protocol that originated with the Pasteur Institute for Tropical Diseases. This was revived for treating ME/CFS by Dr. Cecile Jadin, a surgeon and an artist/painter. The process consists of antibacterials/antivirals for 7-10 days followed by a break. My own variation on it is 7-10 days of antibacterials/antivirals followed by 7-14 of appropriate probiotics (which depends on your microbiome profile). To illustrate both points:

• See this post on dealing with hypersomnia and non restful sleep
• See this post on probiotics to use and which ones to avoid for a person who had a fecal matter transplant. There are NO GENERAL SUGGESTION for any specific probiotics. Each can be good for some people and horrible for other people!

You may want to ask why antivirals are included? In the case of ME/CFS there is considerable evidence that some diminished metabolites allowed reactivation of prior viral infections. If the virus happens to be EBV, this can then result in a false-positive result for Lyme disease. Diminished metabolites cascades into many secondary effect which can become red herrings for the root cause.

Changing your diet — but not following a canned diet!

Certain types of diets have impact on the microbiome. The unfortunate aspect of diets is that they are very complex creatures that interact with a complex microbiome — making things really hard to deal with specific shifts.

The http://microbiomeprescription.com/ suggestions include specific herbs, spices and foods from many studies. It also include results from certain diet types. The problem is that a diet type is often poorly defined and may be implemented differently in Italy than in Florida, but both have the same name!

The bottom line may be a “mediterranean style diet without olives or olive oil, no walnuts but with …. ”

This may be a twelve step program for some…

That is, the cycle of {16S microbiome testing, antibacterials, probiotics, prebiotics, diet changes} may have to happen many times. Each cycle may alter the microbiome  to a new place that will need to be altered again.

Bottom Line– the Half Solutions..

Twice in the past week I have gotten emails from people who had been trying to increase their E.Coli with E.Coli probiotics (Mutaflor or Symbioflor-2). Their lab results have been showing that the E.Coli levels kept decreasing!!!!  They discovered by looking at this blog and the microbiome prescription site that their common sense taking of lots of Lactobacillus and Bifidobacterium probiotics was the likely cause — these are hostile to E.Coli… ooops

Yes, there is complexities — there are foods, herbs, probiotics etc that are to be avoided. It is not just a take A to improve, but also, avoid taking X,Y and Z at the same time (where X,Y, and Z may be a part of your regular diet! items that you may have a quasi-religious belief are good for you)

This is not guarantee to work — it is a logical model based on existing studies and technically low quality, small sample size, vague studies. It is the best that we have to work with — so until a better model with supporting data comes along, it is worth exploring.

This is an education post to facilitate discussing this approach with your medical professionals. It is not medical advice for the treatment of any medical condition. Always consult with your medical professional before doing any  changes of diet, supplements or activity. Some items cites may interfere with prescription medicines.

In 2014, I did my My favorite probiotic: E.Coli Nissle 1917 (Mutaflor) and today, I discovered there have been a lot more studies done on since this post. Is it still  my favorite?

Please note: I said FAVORITE (for me) and I am not claiming BEST.

Let us see what the new research says:

• The probiotic strain Escherichia coli Nissle 1917 prevents papain-induced respiratory barrier injury and severe allergic inflammation in mice.2018
• Escherichia coli Nissle 1917 restores epithelial permeability alterations induced by irritable bowel syndrome mediators. [2018]
• The Probiotic Escherichia coli Strain Nissle 1917 Combats Lambdoid Bacteriophages stx and λ. [2018]
• The Administration of Escherichia coli Nissle 1917 Ameliorates Development of DSS-Induced Colitis in Mice. [2018]
• Prophylaxis of acute respiratory infections via improving the immune system in late preterm newborns with E. coli strain Nissle 1917: a controlled pilot trial. [2018]
  • “The present pilot trial provides first evidence that EcN is able to reduce the incidence of ARIs in the neonatal period of late preterm newborns. Additionally, EcN is characterized by an excellent individual biocompatibility in the absence of adverse drug reactions. “
• Probiotic Escherichia coli inhibits biofilm formation of pathogenic E. coli via extracellular activity of DegP. [2018]
• dentification of an analgesic lipopeptide produced by the probiotic Escherichia coli strain Nissle1917. [2017]
  • “Administration of the probiotic Escherichia coli strain Nissle 1917 (EcN) decreases visceral pain associated with irritable bowel syndrome. “
• Oral Administration of the Probiotic Strain Escherichia coli Nissle 1917 Reduces Susceptibility to Neuroinflammation and Repairs Experimental Autoimmune Encephalomyelitis-Induced Intestinal Barrier Dysfunction. [2017]
• In Vitro Evaluation of the Impact of the Probiotic E. coli Nissle 1917 on Campylobacter jejuni‘s Invasion and Intracellular Survival in Human Colonic Cells. [2017]
  • “We conclude that EcN might be a viable alternative for controlling C. jejuni infections.”
• Intestinal Anti-inflammatory Effects of Outer Membrane Vesicles from Escherichia coli Nissle 1917in DSS-Experimental Colitis in Mice. [2017]
• Effects of Supernatants from Escherichia coli Nissle 1917 and Faecalibacterium prausnitzii on Intestinal Epithelial Cells and a Rat Model of 5-Fluorouracil-Induced Mucositis. [2017]
  • “Factors derived from Fp SN and EcN SN could have a role in reducing the severity of intestinal mucositis.”
• Escherichia coli Nissle 1917 protects gnotobiotic pigs against human rotavirus by modulating pDC and NK-cell responses.[2016]
• Synergic Interaction of Rifaximin and Mutaflor (Escherichia coli Nissle 1917) in the Treatment of Acetic Acid-Induced Colitis in Rats. [2016]
• Use of Escherichia coli Nissle 1917 producing recombinant colicins for treatment of IBD patients. [2016]
• Role and mechanisms of action of Escherichia coli Nissle 1917 in the maintenance of remission in ulcerative colitis patients: An update. [2016]
• Intestinal-borne dermatoses significantly improved by oral application of Escherichia coli Nissle1917. [2016]
• Amelioration of cadmium- and mercury-induced liver and kidney damage in rats by genetically engineered probiotic Escherichia coli Nissle 1917 producing pyrroloquinoline quinone with oral supplementation of citric acid. [2016]
• Escherichia coli strain Nissle 1917 ameliorates experimental colitis by modulating intestinal permeability, the inflammatory response and clinical signs in a faecal transplantation model. [2016]
• Escherichia coli Nissle 1917 in Ulcerative Colitis Treatment: Systematic Review and Meta-analysis. [2015] “EcN is equivalent to mesalazine in preventing disease relapse, “
• Escherichia coli Nissle 1917 enhances bioavailability of serotonin in gut tissues through modulation of synthesis and clearance. [2015]
• Efficacy of Probiotic Escherichia coli Nissle 1917 in Patients with Irritable Bowel Syndrome: a Double Blind Placebo-controlled Randomized Trial. [2015]
  • “probiotic therapy with E.coli Nissle 1917 was not able to induce significant improvement in the symptoms of patients with non-categorized IBS. Nevertheless, when IBS patients were recategorized to subgroups according to their main symptoms, evaluation of the efficacy of the probiotic on some individual items in the symptom list reached the significance level. “
• Pyrroloquinoline quinone (PQQ) producing Escherichia coli Nissle 1917 (EcN) alleviates age associated oxidative stress and hyperlipidemia, and improves mitochondrial function in ageing rats. [2015]
• Probiotic Escherichia coli Nissle 1917 reduces growth, Shiga toxin expression, release and thus cytotoxicity of enterohemorrhagic Escherichia coli. [2015]
• Preventive effects of Escherichia coli strain Nissle 1917 with different courses and different doses on intestinal inflammation in murine model of colitis. [2014]

Bottom Line

Answer is YES — please try finding any other specific strain of any probiotic (except Lactobacillus rhamnosus GG which has been studied more) that has been as well studied with so many significant impacts!

Others appear to agree:

• The Best Probiotic Supplement on the Market – Darwinian Medicine

For an excellent history of Mutaflor /E. Coli Nissle 1917, see Insights from 100 Years of Research with Probiotic E. Coli. [2016] and Escherichia coli strain Nissle 1917-from bench to bedside and back: history of a special Escherichia coli strain with probiotic properties.[2016]

• I’m in the US, so I am forced to use the Canadian Supplier, (thanks to the FDA — because it is effective, they treat it as an experimental drug and thus highly restricted)
• It is available across Europe and also in Australia

Action Item for US Residents

The reason that it is not available in the US is the FDA and NOT the company. It was sold in the US for a while(2010-12) until the FDA forced it’s removal.

http://2017.igem.org/wiki/images/1/17/NDI_733%2C_E_Coli_Strain_Nissle_1917_and_Mutaflor_from_Medical_Futures_Inc_.pdf

“Section 301(11) of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 331(11)) prohibits the introduction or delivery for introduction into interstate commerce of any food (including a dietary supplement) that contains a drug approved under 21 U.S.C. 355, a biological product licensed under 42 U.S.C. 262, or a drug or a biological product for which substantial clinical investigations have been instituted and their existence made public, ”

Write your congressman and senator, asking them to demand the FDA  to grant a waiver for Mutaflor to be sold in the US — just like it is in Australia, Canada and most of Europe. It has been in use for over 100 years. You may wish to copy and paste the PubMed articles above and in the prior post into your email or letter.

Background: https://me-pedia.org/wiki/Mutaflor

I though that I should share a recent person experience.  Recently, I have had a relapse of Myalgic Encephalomyelitis/chronic fatigue syndrome. Technically, I do not have it since it has not lasted 6 months — whatever!

The cause was the same that triggered all prior ones — stress.

I should clarify stress better because is a vague word with many meanings. I have Autism spectrum, which translates for me to challenges with interpersonal interactions.  I have developed a lot of play-acting/conditioned responses/cooping strategies over the years and would fall well into the high functioning autism spectrum.  Stress coming from interpersonal interactions is the trigger — and not general stress. Having a high adrenaline situation is a non-problem for me — so being asked to deliver a massive software product in an unreasonable short period of time is not a problem for me at all. It is some other chemical (other than adrenaline) generated from the interpersonal interactions that is the food for the bad bacteria.

Short list of Symptoms

The first symptoms was going up to 10+ bowel movements a day and night sweats.

The following were seen intermittently this time around:

• Emotional lapidity
• Dizziness
• Slur speech
• Bouts of depression
• Excessive tiredness
• Recurrent sore throat
• POTS
• Slowness of thought
• Heat intolerance

My strategy was simple — use the model that I preach! This meant trying to destabilize the gut intentionally so the bacteria shift that caused above does not stabilize. It also meant to aggressively remove the stress — not a “deal with it”. This translated into alternating weeks doing high dosages of:

• Antivirals, antibiotic herbs: some examples at every meal taking several capsules each of:
  • Olive Leaf
  • Artemisinin
  • Tulsi
  • Haritaki
  • Monolaurin
  • Triphala
  • With items to breakdown biofilms and improve penetration
    • NAC
    • EDTA
    • Serrapetase
    • Lumbrokinease
    • Nattokinease
    • Bromelain
• Probiotics – whatever was at hand but changing each week – it did not matter what, destabilization was the goal. Typically at least 100 BCFU at each meal
  • Bacillus
  • Lactobacillus
  • Bifidobacterium

Needless to say, I needed to take sick time and work from home days because of the herx/die off . Most of the above symptoms stopped appearing intermittently. 🙂

Brain Fog was eliminated by Neem

Happenstance had it that a study on brain fog and d-lactic acid crossed my screen. I checked up for items that would reduce the bacteria associated with it, and went to 3 “00” capsules of Neem with each meal (we make our own from organic neem powder we buy in bulk) . Within a few days the brain fog and other cognitive issues were fading rapidly. In the past, minocycline was the magic bullet for brain fog for me.

Hypersomnia and non-refreshing sleep appeared

The model says that there is a consortium of bacteria involved, with subsets creating certain symptoms.  Think of a criminal group — one group handles dope, another group obtains protection money, another group smuggle tobacco, etc.  You may shut down one of the operations and jail everyone involved — but the others continue.

I found that my sleep went 40-60% more than usual (up to 14 hours). This was easily tracked by my watch, an old Pebble smartwatch. Instead of starting the day awake and alert, I felt like I had gotten totally wasted drinking the prior day. The polite term would be non-refreshing sleep. This persisted for 2 weeks during which time I was heavy on the antivirals, antibiotic herbs.  At the end of that cycle, I decided to try a simple combination of mutually-support probiotics different than the ones above. A directed sniping instead of the broad shotgun approach with probiotics above.

The pair of probiotics were taken three times a day:

• Symbioflor-2 (a collection of E.Coli probiotics) from Germany – 18 drops
•  Bioflorin^®  (Enterococcus faecium SF68  — originally classified as Streptococcus faecium SF68;)  from Switzerland – 2 capsules, 150 million CFU

Within a hour, I could feel something changed. Energy levels seemed to improve. That night, I slept much less. The following night, I was almost back to normal sleep patterns. And, I awoke fresh and alert — ready to take on the day. 

I will run hot for periods of the night with night sweats, so not 100% recovered.  Night sweats are my dominant symptoms now — that I can deal work with.

Bottom Line

The first question is simple — why did I not get uBiome or Thryve done before starting? The answer is simple — it would take too long to get the results. I perceived that the dysfunction was likely unstable and prone to fluctuations (since symptoms fluctured!).

My best ‘probe’ was to see if something caused die off or herx. If it did, I know that it was effective in controlling some abnormal overgrowth. If I turn lobster red after taking 500 mgs of regular niacin, that indicated that lots of toxins from dead bacteria was in my system (even if I did not herx). If I no longer get a niacin flush then it was time to move on to other things. It was also another indicator of progress.

Where I got my supplies — I am in the US.

• https://www.paulsmarteurope.com/symbioflor-2-tropfen-drops-50ml/
• For bioflorin, I recall that we eventually found a european pharmacy that would send it to us.  If you have friends or family in Europe, that may be the easiest route.
  • I have emailed customerservice@germanapotheke.com (Paul’s mart above) asking if they would included it in their catalog. The more people that email and ask them, the more likely it would be added.
  • An alternative:  https://www.paulsmarteurope.com/symbioflor-1-tropfen-drops-50-ml/ is Enterococcus faecium DSM 16440 and a serving (12 drops) is 10-45 million CFU. Bioflorin capsules (Enterococcus faecium SF68)  are  75 million CFU each.

Source of the stress has been removed, and I am intentionally targeting a low stress situation for the next year…. I need to make sure that a healthy stabilization happens.

It looks like I will no longer need to take a cup full of pills around each meal. I will keep monitoring myself closely.

Experiment with lots of variations!

The bottom line is to have a plan and keep to it. There is great variability in the bacteria, in the above case, it was only after repeated weeks of eliminating bad bacteria (until there was no niacin flush) and then hitting it with the right good bacteria that success happened.

If the bad bacteria were still there, the good bacteria could have been quickly eliminated with the resulting “Nope — does not work” conclusion.

Fecal transplants to remove a single bad bacteria like Peptoclostridium difficile, more commonly known by it’s old name as Clostridium difficile have been very successful.  When it comes to a syndicate of bad bacteria which seems to be the case with myalgic encephalomyelitis/chronic fatigue syndrome, the story that I have heard time and time again from correspondants is simple:

• Almost immediate remission
• Remission disappears around 6 months.

Standard medical advice after a fecal matter transplant is usually “Do not take any probiotics” — I am in strong general agreement because people will usually try off the shelf probiotics. In the list below, the common off the shelf probiotics are on the avoid list – confirming this general advice for this person. There is evidence suggesting that very specific probiotics (not always easy to get) may be of significant benefit.

A reader share a before and after several month lab tests (after symptoms started to reappear). Unfortunately they were from different labs so it was not possible to do an easy side by side. Only two items were reported on both. One went from low to high, but the other was reported as very high on both:

There are good and bad members of this group, and we should likely assume that there are robust bad ones that have made a comeback.

This becomes a challenge…. I suspect that normal Escherichia Coli (like Symbioflor-2) will likely be eliminated by these. Given the history of the very robust good Escherichia Coli Nissle 1917 (Mutaflor),   a trial for 1-2 weeks should be discussed.

Other Suggestions

We have a before and an after lab. The return of symptoms suggests that the prior syndicate of bacteria is returning.  Fortunately, on the Other Labs Analysis, we have

• All Taxonomies from tests

which allows me to enter both test results at the same time and get a list of suggestions.

There were several probiotics that were clean suggestions (i.e. no negative impact known on any shift):

• enterococcus faecium probiotics
• lactobacillus kefiri probiotics
• lactobacillus salivarius probiotics

There were also some clean avoid advice, do not take:

• vsl #3 probiotic mixture
• cvs maximum strength probiotic

And several with far more harm than good being calculated, do not take

• lactobacillus acidophilus probiotics
• bacillus probiotics
• bacillus subtilis probiotic
• saccharomyces probiotics

There are many which are very unclear if they will help more than hurt. I would generally advise against them unless there are no clean ones. The numbers are weighted by the number of studies — NOT the magnitude of effect (almost impossible to find those numbers for  most things)

Prebiotics – AVOID!

Again for these specific results, the engine found no prebiotic was safe to take. This point may be missed by physicians…

Supplements

The following are clean suggestions — most of the B vitamins and melatonin

• Other clean suggestions
  • sucralose sugar
  • turmeric herb
  • triphala herb mixture
    • tulsi herb
  • brown rice
  • clove herb
  • bitter melon herb
  • oregano
  • chili peppers
  • cinnamon
  • fennel
  • neem herb
• Not clean by strongly suggested:
  • aspirin

But do not take:

• Vitamin a
• Cocoa
• resistant starch
• soy
• pulse / legumes
• resveratrol / grapes seed  / wine
• beta-glucan foods
• walnuts nuts

Diet is usually a pain because they are massive collections of positive and negative foods (and spices).

Bottom Line

The above suggestions are based on a specific person’s results using two different lab reports. If you click thru on the linked items above, you  will be taken to the studies the suggestion was based on, for example for triphala impact on Escherichia.

Prior Posts on FMT

• https://cfsremission.wordpress.com/2017/10/15/theortical-protocol-for-fecal-transplants-for-cfsibs-etc/
• https://cfsremission.wordpress.com/2017/09/11/ubiomes-before-and-after-a-fecal-microbiota-transplant/
• https://cfsremission.wordpress.com/2014/01/04/review-the-poop-on-fecal-transplants/
• https://cfsremission.wordpress.com/2016/05/14/fecal-transplants-not-for-the-herx-adverse/
• https://cfsremission.wordpress.com/treatment/crohns-disease/experimental-and-new-treatments-for-crohns-disease/fecal-microbiota-transplantation-fmt/

Again, this is an education post only. All changes in probiotics, supplements and diet should be discussed with your knowledgeable medical professional before starting.