Fibromyalgia Fertile Flora

Having suffered more than usual with tummy issues for the past 8 weeks, I thought I would share this blog post from Ken Lassesen, writing for Health Rising:

(Ken Lassesen has recovered three times from chronic fatigue syndrome (ME/CFS).  In his gut series on ME/CFS/FM he provides his personal prescription for better health through gut flora manipulation. Please note that Ken is a patient, not a doctor; these blogs are for informational purposes only. Please consult with your physician before making changes to your treatment regimen. )

Fertile Flora: The Gut Microbiome and the Infection Connection in Chronic Fatigue Syndrome and Fibromyalgia

Before we look at correcting the microbiome, we should understand better what we are striving to do and why.

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Microbiome is the fancy new name for the gut and other bacterial systems that keeps us alive.  All microbiomes are not the same — in fact, the microbiome you have is connected strongly with your DNA and is actually more unique than your DNA. A recent study of identical twins found that they can be told apart by their microbiome and not by their DNA.

You have around 100 trillion bacteria according to a recent New York Times article which states:

Our resident microbes also appear to play a critical role in training and modulating our immune system, helping it to accurately distinguish between friend and foe and not go nuts on, well, nuts and all sorts of other potential allergens. Some researchers believe that the alarming increase in autoimmune diseases in the West may owe to a disruption in the ancient relationship between our bodies and their “old friends” — the microbial symbionts with whom we co-evolved.

Microbiome Under Attack?

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times have not been good for our gut flora. Our modern high carbohydrate and fat diets have been shown to negatively affect the gut microbiome but for increasing numbers of us the negative impact to our gut flora began long before junior had his first french fries.  Research indicates mothers actually pass important parts of their microbiome to their children as they move through the birth canal. Some researchers believe the higher rates of C-sections in the modern era maybe inadvertently contributing to the higher rates of allergy, asthma and autoimmune problems present.

Frequent antibiotic use may have snuffed out some good gut flora in many of us. Nor do we eat the array of probiotic saturated fermented foods our ancestors did.  Given all that it’s no surprise that the diversity of our gut flora compares poorly with those living in more traditional societies with their healthier, more varied diets and reduced C-section and  antibiotic use rates.

Micro in Name Only: Little Bugs With Big Impact

There is already abundant evidence that microflora can have system-wide effects and influence immune responses, brain development and behaviour (Williams, Hornig and Lipkin et. al).

Researchers are still figuring out how important gut flora is to our health but studies suggest the state of our gut can impact many areas, some of which are listed below:

  • inflammatory gastrointestinal disease – reduced levels of a helpful bacteria appear to set the stage for Crohn’s disease
  • cognition – specific bacterial families are associated with poor cognition and inflammation
  • obesity – certain bacteria that metabolize food more completely may increase the risk of obesity/weight) B12 levels (Lactobacillus Reuteri produces most of it)
  • autism – people with autism appear to have a unique gastrointestinal flora that has less variety than healthy individuals.

Autism provides an intriguing example of a dysfunctional gut (increased intestinal permeability, aberrant immune profiles, etc.)  possibly contributing to severe cognitive and emotional dysfunction. Hornig and Lipkin’s Center for Infection and Immunity recently published a study suggesting reduced levels of carbohydrate digesting enzymes may lead to high carbohydrate levels that foster the growth of unhealthy bacteria.  Indeed, RNA sequencing indicated an abnormal gut flora was present (decreased levels of Bacteroidetes, increased Firmicute/Bacteroidete ratio,  Firmicutes and Proteobacteria, and increased Betaproteobacteria.)

A CFIDS Association of America pilot study recently found greatly increased ratios of Firmicute/Bacteriodetes bacteria before and after exercise in ME/CFS. People with ME/CFS also may have deficits in the bacteria that produce B-vitamins in our guts.) These researchers believe changes like these could affect immune functioning, brain development and behaviour.

The Infection Connection

Could an infection have altered the gut flora permanently for some people with ME/CFS?

Could an infection have altered the gut flora permanently for some people with ME/CFS?

It turns out that most infections do temporarily change the microbiome which usually reverts to normal after the infection has passed. In approximately 4-8% of cases, though, this fails to happen and the microbiome remains in a new stable state.

That percentage is pretty close to the percentage of people who come down with a CFS-like state after flu-like infections. Researchers have examined immune, autonomic, endocrine functioning in people with ME:/CFS at the start of infection and afterwards with marginal success. Thus far, immune upregulation and increased symptoms during the early course of an infection and autonomic variables later on are the only unique factors found in people with infections who come down with ME/CFS.

No one yet, however, has examined the most immune-rich substrate of all – the gut. I propose that an infection induced change of gut microflora – which do not revert to normal – plays a key role in chronic fatigue syndrome.

Your Microbiome is Unique to you — and So May Be Your ME/CFS/FM

If my hypothesis on the cause of ME/CFS/FM is correct (a stable dysfunction of your microbiome) then every patient will have a different variation of their unique microbiome! This means that your symptoms will be slightly different because your dysfunctional bacteria are slightly different. This actually goes one step further, the signalling chemicals from these bacteria interact uniquely with your DNA.

Getting a good idea of your gut composition, however, is difficult. Unfortunately currently available medical tests only characterize a small percentage of the species in our gut. Tests done at academic centres (not available at commercial labs) using PCR and DNA fragments are more accurate. Furthermore, many species (~ 80%) cannot be kept alive outside of the body which makes study very difficult.

A good review is at Aging of the Human Metaorganism: the Microbial Counterpart from which the diagram below comes from.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Altering Gut Flora: More Art Than Science

That means there’s more art to changing the gut flora than science.

On the plus side, it appears very possible – by effectively declaring war against the offending bacteria – and then aggressively repopulating it with good ones, to alter the gut flora. The disruption is not easy — before the arrival of antibiotics- a reset of the gut flora often began by inducing a gut infection (often cholera) to clear the slate, so to speak. Asking a MD to infect you  with cholera to treat CFS today , of course, would be met with complete disbelief ; at one time, it was conventional medical practice and was reportedly successful. (Then again who would have thought we’d be talking about faecal transplants or using worms to alter gut flora….)

To me, any change is better than resignation to the current state of health in CFS. The key items are:

  • Killing off bad species (may have collateral damage on the good species) – antibiotics, herbs, spices
  • Feeding the good species (so they start to dominate) – prebiotics, often FOS, but there are other things
  • Disruption of the new stability (so the old ones have a fighting chance)
  • Importing good species (a.k.a. probiotics of the appropriate type, fermented foods, raw milk and faecal transplants)
  • Starving the bad species (so there are less of them) – no gluten and no sugar diets are likely doing this

I believe the following approaches have the right general approach but may lack the fine-tuning needed for ME/CFS and other disorders. Early reports suggest that ME/CFS patients, for instance, may have a major drop in all E.Coli species but in Crohn’s Disease over 95% of the invasive species are E.Coli. With one, you want to encourage (healthy) E.Coli; with the other, you want to kill off (unhealthy) E.Coli — one treatment plan does not suit all conditions.

These approaches below are correct, I believe, that we should attempt to enhance our gut flora — but they have not evolved enough to address specific gut dysfunctions:

If you are doing any of the above,  I suggest that you keep doing them but consider adding a few modifications which I will be suggesting in my following posts that are specific to the microbiome shift that may be occurring in CFS (which is likely similar to that seen with IBS).

I have yet to see any reports of the above consistently resulting in remission of CFS  but I have seen reports of symptoms reduction. I believe they are likely part of the solution but are insufficient in themselves.

Ken Lassesen has a plan…

Ken Lassesen has a plan…

In his future posts, Ken will share his current understanding and experience in being an anarchist against this dysfunctional microbiome.


Guess what? I was lucky enough to experience a new symptom (for me, at least!)

8907It seems, or so the emergency room doctor tells me, that it is very common in FM sufferers to feel intense pain in your ribcage and chest. This aching and stabbing pain can really impact on your enjoyment of life – says she who just spent 6 hours in the emergency room.

Supposedly, chest pain in FM is usually nothing to worry about, but occasionally it can indicate other problems. AND we are always told not to ignore chest pains – so when a stitch in my side spread under my right boobie and into the middle of my chest, while driving in the car with Mommy, it was: ‘umm, I think we need to go to the hospital.’

This chest pain is referred to as costochondritis. It is an inflammation of the cartilage that joins the ribs to the chest bone. It is this inflammation that causes the sharp chest pains inside the chest wall. The pain of costochondritis often mimics the pain of cardiac problems, including heart attacks and stroke. This can be quite scary for some sufferers (and my Mommy and I!); however, costochondiritis rarely causes any physical complications.

largeCostochondritis affects about 60% to 70% of us. Costochondritis in women is particularly common, especially in women between the ages of 20 and 40. Costochondritis rib pain can last for weeks and even months, and can reappear at different intervals throughout your illness. This problem is not restricted to just us; it can also affect those who don’t have FM and is often a result of chest trauma or exercise-related injury. In fact, it is thought that about 10% of the general population has costochondiritis.

Costochondritis affects the junction between the ribs and the chest bone (the sternum). Seven bits of cartilage attach your ribs to your sternum, and costochondiritis causes this cartilage to become inflamed and sore. If you have costochondiritis, you will be able to feel pain upon movement of your upper torso or when you touch your ribs. Most commonly, pain is felt on the left side of your chest, though chest pains on the right side, or even on both sides, can occur.

stabbing_pain_in_chestThe pain felt like a knife stabbing between my ribs, until it waned and just started aching whenever I moved. I have been told that this pain can wax and wane: some days it will be worse, while other days it will be much better. The sharp pain caused by costochondritis generally begins in the chest. This pain can then radiate outwards, attacking the shoulders, neck, and upper abdomen – Great! Something to look forward to in the morning! Costochondritis pain can last for long periods of time and chronic costochondritis is not uncommon. However, most pain should be gone within 6 months to a year from the onset of symptoms – WTF!!!!

To date, the specific causes of costochondritis are unknown (again?), though researchers do believe that a variety of factors could play a role in the development of the illness.

  • Repetitive Activity: Repetitive activity, like sitting at a desk or leaning forward over a computer for long periods of time often puts stress on the muscles in the chest, may exacerbate pain in the chest area. We already have hypersensitive muscles, and this repetitive activity can cause costochondritis.
  • Fibromyalgia Tender Points
  • Myofascial Pain
  • Infection: Rarely, costochondritis can be caused by upper respiratory tract infections or non-allergic rhinitis. These conditions can cause long periods of repetitive coughing. This coughing can stress and strain the cartilage that connects the ribs with the sternum, causing constant chest pains.

Costochondritis can exacerbate your symptoms; in particular, FM often inhibits your ability to participate in certain activities or sit in certain positions for long periods. Because costochondritis causes such intense chest pain, it often makes sleeping difficult or impossible, causing disordered sleeping and insomnia. Costochondritis disability is not uncommon, especially in fibromyalgia.

It is important that if you are experiencing any type of chest pain that you immediately consult a physician in order to correctly diagnose the nature of the pain.

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Good Night, Sweet Prince

Given that us FM fighters battle sleep disruption, pain and a number of other stressful symptoms, you may be wondering what impact this is having on your immune system. Potentially, all this stress on our bodies can drag down a person’s immune system (among other things).

In a study, Ines Kaufmann, M.D. and co-workers in Munich, Germany compared 22 FM patients with 22 age and gender-matched healthy control subjects, Kaufmann found a significant reduction in two immune system markers.

Both of the markers are called adhesion molecules because they stick to the surface of the white blood cells that circulate as part of our immune system. These adhesion molecules work like a GPS to get your white blood cells to travel to places in the body where they need them, such as tissue injury sites. They also are involved in recognising and destroying infectious organisms, as well as removing toxic substances and debris from the body.

A lower number of adhesion molecules on the surface of your white blood cells means that the white blood cells are travelling without a map and can’t get to where they are actually needed. This could lead to a compromised immune system, one that lags in its ability to get rid of infections and clear up inflammation in the tissues.

Consequently, you may have a more difficult time getting over colds or flu-bugs that commonly occur during the winter months.

Besides lowering your ability to fend off infections, a decline in adhesion molecules on your white blood cells may also compound your painful symptoms. These molecules also play a role in triggering your white blood cells to release powerful opioid-like pain relievers in the muscles and other tissues where local injury may easily occur.

While the reduction in adhesion molecules may explain why you have trouble getting rid of infections and why the slightest injury produces more pain than it should for you, these defects in cannot identify people specifically with FM – Kaufmann’s team has reported similar findings in people with complex regional pain syndrome.

This means that additional studies are needed to determine the relationship between the immune system changes and the development and persistence of painful conditions.

BUT, if you find yourself trapped with a head cold, flu, or other infection that lingers on and on, all they can offer us for now is the advice to increase your sleep time to help power up your immune system. (Wouldn’t we love to?)