Reminder: Probiotic can cause major herx!

“Hi Ken,

Here’s some more grist for the CFS Remission mill. I had been much improved by upping my Vitamin D and adding Symbioflor-2. I was even working 20+ hours a week, a huge amount for me over the last five plus years. On top of those two mainstays, I rotate in another probiotic. Since I’m always low in Lactos and Bifidos via many stool tests over the years, three of which are featured on your blog, I aim for your recommendations on those. I’m no longer usually that sensitive to most supplements and probiotics and usually react well to Bifidos, especially for a slight but very elusive change in brain fog. But last Friday night I took ONE of these puppies and have been suffering ever since. The next day I could barely move and had to resort to pain killers, the histamine reaction is still going strong with blocked sinuses and runny nose and constant sneezing. Here is a link to the Bifido only probiotic I took, which I believe is mentioned on one of your posts. There are several versions of this 25 Billion Bifido only option from Renew Life, but they seem to contain the same ingredients.
Forgot to mention that I used some of the techniques you mentioned on your blog, I think from a post about your wife having a tough reaction to a probiotic. I’m bombarding myself with probiotics I know I can tolerate as well as antihistamines (OTC, quercetin, turmeric, anything I have on hand) and that has helped. Without your blog, I wouldn’t have even know that a probiotic can cause such a herx or histamine response and probably would’ve just kept taking it and chalked it up to a “flare” or bad seasonal allergies.”

On a related note, a reader asked about which version of Reg’Active (L. Fermentum ME3)

The answer is simple, start with the lower dosage one.  Some readers have reported major herx from this probiotic. If you have capsule making equipment, consider splitting the capsules into smaller dosages.

Back to the above issue. The herx/histamine causing bacteria consisted of:

Flora

First, remember that doing single species probiotics is the safest path when practical (ideally with the strain named — above lack any strain information 😦 )

Second, search pubmed, it is not hard, just enter the words!

https://www.ncbi.nlm.nih.gov/pubmed/?term=bifidobacterium+lactis+histamine

pubmed

  • “Human peripheral-blood-derived mast cells were stimulated with Lactobacillus rhamnosus (L. rhamnosus) GG (LGG(®)), L. rhamnosus Lc705 (Lc705), Propionibacterium freudenreichii ssp. shermanii JS (PJS) and Bifidobacterium animalis ssp. lactis Bb12 (Bb12)” [2011] mast cell stimulation releases histamine.
  • Bifidobacterium bifidum G9-1… whereas those in mast cell mediators, histamine and cysteinyl leukotrienes were not [suppressed].” [2015]
  • Bifidobacterium infantis and Bifidobacterium longum… Prolonged treatment …significantly suppressed both the allergy-like behaviors and all of the above mentioned factors involved in histamine signaling.” [2008]

In other related articles, bifidobacterium reduced allergies over 2-4 months.  It appears that this may be due to this bacteria displacing higher histamine producing  bacteria over time. It does not mean that these probiotics do not produce histamine.

Bottom Line

Go slow and gentle with probiotics.  Antibiotics, herbs and spices flow thru the body with a drop of 50% (half-life) in a few hours usually.  Probiotics are living creatures that may not drop, but increase!! When you have too severe a probiotic herx, it can become a challenge to moderate it. A high dosage of probiotics that you do well with, may help — you are trying to displace the herxing probiotics.

In some cases, there are other probiotics known to be hostile. For example, lactobacillus and Clostridium butyricum (Miyarisan) will moderate E.Coli probiotics.

Start with low dosages and slowly work up — if you slip into a herx, it may last a much longer time than expected.

Atypical Crohn’s Disease – later stage CFS?

A reader commented that she, like my wife, evolved into atypical Crohn’s Disease from CFS. On the surface, it means something that looks like Crohn’s Disease but does not behaves typically or appears typically how Crohn’s disease respond to treatment.

For example and to establish definitions.

An Atypical Presentation  [2004]
In this case, the patient only exhibited a few of the traditional signs, symptoms and clinical findings associated with Crohn’s disease. The patient presented with an acute GI bleed, which is seen in only 20% of patients with Crohn’s disease. In this case, the disease’s onset was acute and severe, which sharply contrasts to the typical insidious onset of Crohn’s. Additionally, the patient did not experience weight loss traditionally associated with Crohn’s disease. The histology of all four specimens taken at the time of colonoscopy was similar and did not fit the usual histologic picture of ulcerative colitis or ischemic colitis. The location of the ulcers is unusual for the initial manifestation of Crohn’s disease.
….Crohn’s disease is an inflammatory bowel disease marked by patchy areas of full-thickness inflammation anywhere in the gastrointestinal tract, from mouth to anus…. Crohn’s disease is mediated by T lymphocytes, which arise in genetically susceptible individuals as a result of a breakdown in the regulatory constraints on mucosal immune responses to enteric bacteria.

This is a nice study,  The Treatment-Naive Microbiome in New-Onset Crohn’s [2014] Disease which shows a both any treatment and what happens with treatment with an antibiotic.

crohn

Note some factors shared with CFS and FM microbiomes:

  • Major decrease if bifidobacteria [Kyberompact Post]
  • Increase of Enterobacteriaceae as seen with IBS  [2016]

The differences:

  • Pasteurellacease are normal or low in CFS [Post], high in Crohn’s disease
  • Fusobacteriaceae are normal in CFS, high in Crohn’s disease
  • Some species of Veillonellaceae  are low in CFS [post], the entire group is high in Crohn’s disease

The two biggest shifts (the biggest increase and the biggest decrease) in Crohn’s disease are also seen with CFS.  The difference is that other families have not shifted yet. How the body responds to further shifts is influenced by DNA.

This study also illustrate the effect of antibiotics — they appear to make the total shift worst (but may result in some symptom relief).


Bottom Line

As I wrote earlier: Autoimmune = DNA + Microbiome shift. The more that shifts, the worst the autoimmune condition can become. Which autoimmune disease is likely a function of your DNA. If you are unlucky, you may end up with several pages of diagnosis.  The final problem is how to shift the microbiome back to normal. The first step is to inhibit further shifting: for CFS, given what is available, it appears to be E.Coli probiotics and bifidobacteria probiotics as a starting point.

 

In memory of Silvia – a last note from a CFS Suicide

Below is an English translation of her last email (original Spanish version is here):

Aimed at all and in particular who is responsible for reading this:
I, Silvia González Rodríguez in full mental faculties and lucidity (which is to my misfortune, since suffering would be much less if I lacked them) decide to seek my freedom, to put it in a subtle way. This is the way I choose to find and fight it against this most heinous, painful, crueler than can  ever imagined.  Unfortunately many have had to perform this act so terrible, terrifying and destitute to finally find a Rest to the agony and suffering that is the nature of this disease … (but at a cost, price of suffering without equal).
After being in the midst of life suffering, enduring the unimaginable, no one (yes, nobody and I say it with all the conviction, because I am perceived, never recognized as sick by healthy people), to fight to survive, and not to live … Enough of suffering without equal at all levels, cruel, visceral pain !! ..
Among the miles of symptoms of these diseases, injuries … my hyperacusis[sound sensitivity] is very painful. This is what has taken me to the limit of the limits, the power of the self I nothing, since I am always subject to noises (machinery, exterior noises, from the building, even the wind — makes me ooze the pains of pain).
(See for another example the case of the son of one of the most important geneticists in the world, Ron Davis, with whom I feel unique and totally identified in it, except that I am not isolated from the noises etc … I do not know anyone — “More than the an academic study with me and my son Davis, with these diseases”)
In the specific case of sfc / severe sever, severe severe (not leaving aside my other diseases or injuries and their miles of symptoms, unable to put them all:
  • lumbar disc hernia,
  • ciatica,
  • lumbago,
  • scoliosis,
  • osteopathy of pubis,
  • contractions throughout the body,
  • severe fibromyalgia,
  • chronic fatigue syndrome / myalgic encephalomyelitis,
  • multiple grade 3/4 chemical sensitivity,
  • borrelia or lyme infection,
  • irritable bowel syndrome,
  • shattered microbiota,
  • nervous system,
  • immune etc. destroyed,
  • metal poisoning anemia,
  • Chronic hyperacusis,
  • severe migraine,
  • allergies,
  • asthma,
  • endometriosis very painful,
  • endometriosis polipo,
  • chronic nausea,
  • and a long list of other.

The problem is serious, very serious because we (CFS/ME patients) are doomed for life, to be chained, isolated from the world, without resources and without anyone moving a finger for us (the health system, etc.).  Then there is another component, we do not have the strength to fight nor our basic minimum rights, or manifest ourselves, there is no voice, people know nothing of the millions of people in the world that we are like us confined, without knowing about our existence and hell …

I will not go into details of what is happening, those who know my history, family, friends, acquaintances and perfect strangers are left without words. I never imagine that behind Silvia that I imaged I had so little time, (always wearing “makeup”, my reality has so deceive my mind. I know that it is was so terrible — how to continue to endure and enduring) all this suffering that I will not relate …

For 6 months I think not hay Not a single person already believer of the sea of pain, not believer, of diverse cultures, religions, ideologies etc (and there have been hundreds with which he spoke) that do not receive so that finally rests of this horror …
During almost all the years that it has been INVISIBLE in the face of the system in general, and in particular with regard to the health system … (nor am I even a number, since I can not risk going to a hospital for many reasons..  When I have gone, no treatment did any anything for me, nor to make me sleep, nor to relieve my pain nor …. I only come more sore, shattered, with my hyperacusis[sound sensitivity] becoming very painful to almost bursting … .),

I would also like to remain INVISIBLE for this … out of respect for me and my parents who are the ones who live here with me …
Since nothing can be done for me, nor do I see that the health system or whoever the competition does anything for it … since nothing makes me sleep it is crazy and I cries out to heaven!

As l am already completely obvious pain, suffering and everything else… society should be provided the necessary elements so that a person, a human being, could put peaceful end to her life (non-life) in a way not painful, with dignity,and not to have to go with much panic, fear, the way most heinous, cruel and inhumane
It should be a fundamental and vital right choice of death (rest) peaceful, serene, free, painless, with dignity, being accompanied by your family, when a person loose quality of life completely or does not have that life to the bare minimum we should have…
No one should prevent us aid to die, rest of dignified way, especially after all that we have been through, and we wish to move onwards
I know many people from different countries who ask, beg, beg this, as I do we ask help from absolute despair — help in either way [treating us effectively or allowing us to escape] … but nobody helps, no one can help us! There is fear, dread and panic of these laws that we have not let them even if they wanted to stop and help us to stop this daily torture and relentlessly
You know how many suicides and suicide attempts (because its unfortunately they don’t get it and that to me is not suicide, I don’t believe in people suicide. Yes it is people who just want to put an end to their suffering). How can the institutes here in Spain deny this healthcare?… almost all die in anonymity, disconsolately, in solitude, thinking in as it will find it , thinking of their loved ones horror of world! All we want to go sleeping (don’t know nor is that), in peace… not go died of panic, fear, in the most absolute of the solitude, tossing you about, thinking of what will happen… it is indescribable!
I am not afraid of death, yes this death in life, not life. Yes this uncontrollable atrocious suffering. Yes, we have to go through unspeakable suffering
It is a real embarrassment, the politicians’ attitude to this is shattered… before the issue of the legalization of euthanasia, assisted suicide etc…
THERE IS NO RIGHT to have to suffer excruciatingly until the end !!

My  personal comment

I have had CFS/ME three times. I have been lucky with misdiagnosis from one physician but appropriate treatment, a physician willing to take risks from the latest studies presented at CFS conferences (Dave Berg – hypercoagulation, Cecile Jadin – occult infections) and a physician willing to cooperate. To me, I really know “That there but by the grace of God, I could be me writing the above!”.

In my immediate family, I live with a person with mild hyperacusis — I cannot eat in the same room, I cannot type on a laptop in the same room; significant multiple chemical sensitivity — infrared sauna, shower with soap, vinegar and alcohol whenever I come home, clothes must be ozonated and wash multiple times. The family has been blessed because we had the means to have a small home[892 sq ft, 83 sq m] custom built for multiple chemical sensitivity on 25 rural acres for hyperacusis. That is far from the reality of most CFS/ME victims.

I have seen the progress in my wife from mild IBS, to a CFS diagnosis (and remission) and eventual progression to atypical Crohn’s disease. With specialized probiotics from around the world, she is stable without any prescription medicine — and hopeful for reversal.

My academic training is in statistics and modelling. I have read just about every article on CFS that existed when I had my last two relapses — looking for a model that better fit all of the complexities seen in the studies. Overwhelming complexities. The model that was the best fit is simple to explain but a challenge to treat (because we do not have appropriate tools to use). The model is a stable shift of the microbiome (gut bacteria) that results in the body getting a very different mixture of chemicals (vitamins, amino acids, minerals) being provided to it. Too much of some, too little of many.  Variation in DNA results in different responses(symptoms) to these changes.  Because your microbiome is unique to you, the shift is unique (but appears to be similar across many autoimmune diseases).

Treatment or correcting this shift is the challenge!  Using antibiotics is often equivalent to using a shotgun to kill a fly in the kitchen. Populating with good bacteria is a severe challenge…. most probiotics do not take up residence (“here today, gone tomorrow”). Most of the families are not available as probiotics. When they are available, government regulations and manufacturers can make it very difficult to obtain. In the US you cannot get any E.Coli probiotics through normal channels (I have to travel to Canada to get them). In Canada, UK, France, Spain etc you cannot buy Lactobacillus Fermentus ME.  If you are lucky, you can get friends or family to ship them to you and hope customs let them slip through. The costs of probiotics are not covered by medical plans and often the shipping cost can reach $50. How can a person on disability due to CFS/ME afford it?

A hundred years ago, there were sanatoriums for tuberculosis; we urgently need sanatoriums for CFS/ME. Appropriate levels of quietness, chemical free environment, dentistry to remove mercury, appropriate food, appropriate probiotics and appropriate herbs and spices. Home treatment with 10 minute office visits have failed. When a person is too tired to prepare food, and too poor to afford the essentials, too cognitively impaired to remember to take pills, the person is made helpless against this disease.

It you have Amazon Prime (free Video), you may wish to watch “I remember me

Coal Tar and “Restore for Gut Health”

One of the best performing pages on this blog is “Restore for Gut Health: Danger Will Robinson”. Coal tar has been used topically (on skin) for psoriasis vulgaris for decades [2015], but what about internal consumption of coal tar extract (which appears to be substantially what Restore appears to be “Lignite Extract“).

So what are possible risk with internal consumption?

Potential DNA Damage

Addendum

A reader forwarded me information to find two published studies. The reader noted that these were not done independently, but by members of the company (Aka CONFLICT OF INTERESTS). I reviewed them and quoted below:

  • “The lignite supplement blocked a PT-gliadin dependent decrease in TEER in small intestine and colon cell line membranes. ….demonstrated a statistically significant reduction in apoptosis in RPTCs. Human clinical trials are needed to evaluate the use of RESTORE to support health in gluten-sensitive individuals.” [2016] statistically significant can mean as little as 1% change, some of the confidence intervals as a very high 5% (< 0.05).
    • DAR and ZB are shareholders and employees of Biomic Sciences, LLC, the entity that produces the lignite extract supplement used in the study. JJG is a consultant and shareholder of Biomic Sciences, LLC.
    • “, the lignite supplement was tested by ultra-sensitive mass spectrometry based heavy metal detection and found to be free of potentially toxic heavy metals or soil minerals [7,8].” — the studies referenced were NOT testing their product and further more, 7 states:
      • “Ultrastructural changes of myocardium cells, neurons of sensorimotor cerebral cortex, endothelium of blood microvessels were registered by transmissive electron microscopy in mice receiving rock balm preparations per os. Both stimulating and toxic effects were observed dependently on used concentrations. This necessitates dosage to be strictly observed.” [1993]
      • 8 states “One-fifth of both US-manufactured and Indian-manufactured Ayurvedic medicines purchased via the Internet contain detectable lead, mercury, or arsenic.” [2008]
    • Their 2017  study “Protective Effects of Lignite Extract Supplement on Intestinal Barrier Function in Glyphosate-Mediated Tight Junction Injury
      • “Initially introduced in a 1962 patent, and commercialized in the herbicide Roundup® in 1976, glyphosate is widely used in both industrial agriculture and residential settings.” — so their claim is that it helps Roundup caused damage.
      • ” RESTORE itself is comprised of the 150 mg of Terrahydrite™ lignite extract”, a new fancy TRADEMARK name that was refused on 2017-02-02. Legally, they were required to remove this from all of their websites immediately. They did not.
      • ” Further studies are needed to assess potential clinical applications of lignite extract supplements.”

Update — I have even deeper doubts about this product and the operations of the company selling it.


Bottom Line

There are ZERO published safety studies on this product — this is essential given the nature of the product. Safety studies should include DNA mutations. There are no published studies on it’s effectiveness on PubMed. This product has the appearance of “snake oil” with placebo effects being likely.

The use of coal tar extracts internally does not appear anywhere on PubMed. Studies exists where occupation working with coal tar results in internal consumption — and all of those presenting very undesired consequences.

I strongly advise against using this product.

Suicide — a high risk side effect of CFS and FM

This morning, a friend on facebook passed the sad word that a member of a small facebook CFS group had committed suicide.  The friend was confined to a wheel chair when we first contacted and is now out of the wheel chair, walking, cleaning house, visiting family as a result of using the model that I advocate. She is not in full remission but have come a very long way since we first contacted.

This post will look at the suicide risk for CFS. The best medicine for this risk is hope and reduction of symptoms — which is the goal of this blog.


Bottom Line

Hope is the best cure for a tendency towards suicide. I have seen the general pattern for people that go into remission is to disassociate themselves from the CFS/FM community — which is very understandable. CFS/FM is a bad, traumatic experience and “best forgotten”. There is the story of the 10 lepers (Luke 17:11-19), Jesus asked, “Were not all ten cleansed? Where are the other nine?” which states the reality of the human condition.

I am the one that stayed.. have faith.  I get a continuous stream of reports from people who use my model to experiment with suggestions that have gotten major improvement — from wheel chair bound to walking to the beach!

If you return to normal life, please, please — send my your story so I can at least share it to give hope to your  fellow suffers! Or post it as a comment on this story!

Autoimmune = DNA + Microbiome?

I started this post planning to look at diabetes and I had so many hits on microbiome and other autoimmune disease included that I thought that I would move to the full topic.

My word of warning is simple: once the microbiome (gut bacteria) gets shifted out of normal (like with CFS/FM/IBS etc), the odds are significant that the shift could continue to worsen (and depending on you DNA) results in additional and more severe autoimmune diseases.

DNA SNPs

There are some 440+ articles on PubMed finding that some DNA SNPs are associated with diabetes (and other autoimmune conditions). The same appears to apply to almost all autoimmune diseases.

Other diseases (sample)


Bottom Line

There are several points that I want to make:

  • The hope of fixing your DNA is in the remote future at best; the ability to alter your microbiome — while still primitive — exists now.
  • The number of DNA SNPs involved and the number of bacteria species and strains are so huge that there is no simple ‘cookbook recipe’. The recipe is to experiment with the “spices and the yogurts in the kitchen” until you find that perfect recipe!

Doing nothing risks moving onto worst autoimmune conditions. Not only worst in terms of symptoms — but also worst in terms of the difficulty to make the microbiome right!

Real Niacin – improves IBD/IBS (and likely CFS/FM)

A reader linked me to “Niacin ameliorates ulcerative colitis via prostaglandin D2-mediated D prostanoid receptor 1 activation [2017]”.

I have mention niacin below in various other contexts:

The above articles cites:

  • “Niacin (nicotinic acid) is also known as vitamin B3 and serves as a precursor for coenzymes such as nicotinamide adenine dinucleotide (NAD) and nicotinamide adenine dinucleotide phosphate (NADP), which are essential for living cells”
  • “One unpleasant side effect caused by niacin is cutaneous flushing. Niacin stimulates prostaglandin D2 (PGD2) release in both mice and humans (Hanson et al, 2010; Song & FitzGerald, 2013), which plays a central role in the niacin-induced flushing. Low-dose aspirin could depress niacin-evoked PGD2 release and reduce the associated flushing (Cefali et al, 2007; Song & FitzGerald, 2013).”
  • “In this study, we investigated the therapeutic effect of niacin on colitis both in mice and in patients with moderately active UC. We found that niacin shows anti-inflammatory and anti-apoptotic properties through downregulation of colonic inflammatory cytokine levels, suppression of vascular permeability, and inhibition of colonic epithelium apoptosis by activation of DP1 receptor in macrophages, endothelial cells, and colonic epithelium. Furthermore, treatment with retention enema containing niacin effectively promoted clinical remission and mucosal healing in patients with moderately active UC.”
  • “Twenty-six UC patients, who did not respond to conventional therapies, were recruited… Patients were assigned to receive retention enema treatment (including 300 mg niacin/100 ml) daily for 6 weeks … Moreover, 24 out of 26 patients that received niacin treatment underwent overall histological improvement with normal epithelium, mucosal architecture, and lamina propia cellularity and few inflammatory cell infiltration”
  • The images below are from the study, and clearly shows improvement!
    niacin
  • “Niacin displays multiple beneficial effects on colitis in mice and humans by activation of the PGD2/DP1 axis. These results suggest niacin may become an effective therapeutic option for UC patients.”

Other studies:

  • Systematic genome assessment of B-vitamin biosynthesis suggests co-operation among gut microbes [2016]” shows the niacin pathways
    fgene-06-00148-g0004
    • “We found that the roles associated with the uptake of the nicotinamide and nicotinic acid  were only present in Actinobacteria, Firmicutes, and a single Proteobacteria…The phyla Actinobacteria and Firmicutes contain lower ratios of de novo producers than the other three, and in these phyla, we observed the presence of the niacin salvage pathways, which are not present in the Fusobacteria and Bacteroidetes genomes.”
    • This study also investigates other B vitamins in depth and recommended reading for CFS researchers.

Bottom Line: Enema Enigmas Again!

In an earlier post, a reader reported very great success from an enemas containing SymbioFlor-1 and Symbioflor-2 (Enterococcus faecalis and E.Coli). The above study indicate benefit from niacin enemas. E.Coli produces niacin — but any association of positive responses may be speculative.

Another 2017 study reports “Collectively, niacin promoted cardiac functional recovery after ischemic myocardial infarction through DP1-mediated M2 polarization and timely resolution of inflammation in hearts.”

Personally, I have taken niacin for the mental clarity that results after a niacin flush. It appears that there were other benefits that are just being discovered!