FYI: Site is back up. There was a tangle of configuration issues with providers that took several days to resolve.

http://microbiomeprescription.com/Data/Symptoms

CFS/ME is not understood by most medical professionals because it lacks:

• Definitive Tests
• Definitive Treatment Plans
• Consistency of presentation from patient to patient for those assigned to this group

One major challenge for front line physicians is they have three patients with similar symptoms, when a fourth one arrives with different symptoms – it throws them into a loop. The CDC and health providers like Kaiser Permanente are slowly working to re-educate physicians (remember it tooks 30 years to re-educate physicians that stomach ulcers were caused by H. Pylori (a bacteria) and not because the person worried too much!). This issue has been made worst from evangelism to MDs of bad science. I like it that the Centers for Disease Control is now emphasising ” Myalgic encephalomyelitis”[pain with inflammation of central nervous system] which should help with changing perceptions. It is matching the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). 

This is even worst with the general with common misconceptions such as “yuppie flu” and “I get tired too”. In some cases, it has been deemed to be burnout, although a 2019 study found this to be false.

The most common peri-onset events reported by subjects were infection-related episodes (64%), stressful incidents (39%), and exposure to environmental toxins (20%)… At the time of survey, 47% were unable to work and only 4% felt their condition was improving steadily with the majority (59%) describing a fluctuating course. Ninety-seven percent suffered from at least one other illness: anxiety (48%), depression (43%), fibromyalgia (39%), irritable bowel syndrome (38%), and migraine headaches (37%) were the most diagnosed conditions. 

Rates of unemployment can be as high as 81% (7) while ~25% of patients may be homebound or bedridden … the median rate of full recovery is only 5%

Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. [2019]

The results indicated that chronic fatigue and burnout should be perceived as 2 distinguishable constructs in the academic context. “

THE RELATIONSHIP BETWEEN CHRONIC FATIGUE SYNDROME, BURNOUT, JOB SATISFACTION, SOCIAL SUPPORT AND AGE AMONG ACADEMICS AT A TERTIARY INSTITUTION [2019]

Last Wednesday, I attended a lunch with the Seattle CFS/ME group. Despite some of the people having had the conditions for over 30 years, now being confined to wheel chairs – the conversation revealed that they were not aware of all of the symptoms (they had some classic CFS symptoms and were not aware that they were CFS associated).

Symptom List

This list (with references) is associated with chronic fatigue syndrome a.k.a.
Myalgic encephalomyelitis. My view is that these diagnosis is a reflection of a microbiome dysfunction. Many CFS patients have gone into temporal full remission from a fecal matter transplant. With this view, we also have a list of symptoms that may be associated with a microbiome dysfunction. This is only a partial list.

Sources: [2015] , [2011] ,[2011] [1987] [1993] [2009]

• ‘small heart’ with small left ventricular chamber and poor cardiac performance in patient subsets
• 10% reduction in grey matter volume
• abdominal pain,
• abnormal growth factor profiles,
• air hunger,
• altered control and reduced cortisol production
• arthralgias and ‘gelling’ (stiffness),
• ataxia
• auditory learning reduced
• autonomic dysfunction
• awaken feeling exhausted regardless of duration of sleep,
• awaking much earlier than before illness onset,
• bloating,
• brain stem hypometabolism
• cardiac and left ventricular dysfunction 
• cerebrospinal fluid proteomes distinguish patients from healthy controls
• cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
• chronic cough(40%),
• cognitive dysfunction
• cold extremities
• day-time sleepiness
• decreased cortical blood flow
• decreased natural killer cell signalling and function,
• decreased neutrophil respiratory bursts and Th1,
• depression,
• difficulty processing information
• extreme pallor or Raynaud’s Phenomenon
• fatigue of chest wall muscles
• faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation.
• feeling unsteady on feet,
• Fibromyalgia
• frequent awakenings,
• headaches
• hypoperfusion 
• immediate recall reduced
• immune dysfunction
• impaired depth perception
• impairment in attention and motor functioning (50%)
• impairment in speed information processing and executive functioning (40%)
• inability to focus vision,
• inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension,
• increases in inflammatory cytokines,
• insomnia,
• irritable bowel syndrome
• Joint hypermobility
• laboured breathing,
• light-headedness/dizziness
• low blood pressure and exaggerated diurnal variation
• low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
• marked diurnal fluctuations;
• marked, rapid physical and/or cognitive fatigability in response to exertion,
• moons of finger nails may recede.
• mottling of extremities,
• muscle weakness,
• nausea,
• neuroendocrine and immune symptoms
• neuroimaging studies report irreversible punctuate lesions
• neuroinflammation of the dorsal root ganglia
• nocturia
• pain,
• palpitations with or without cardiac arrhythmias,
• pathological fatigue and malaise that is worse after exertion,
• photophobia
• Poor attentional capacity and working memory 
• poor coordination,
• postural orthostatic tachycardia syndrome, 
• pro-inflammatory alleles
• prolonged sleep including naps,
• recurrent adenopathy (33%),
• recurrent feelings of feverishness with or without low grade fever,
• recurrent low-grade fevers (28%). 
• recurrent rash (47%), 
• recurrent sore throat (54%),
• sensitivity to light, noise, vibration, odor, taste and touch;
• shift towards a Th2 profile
• short-term memory loss
• significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest
• sinusitis,
• sleeping most of the day and being awake most of the night,
• slow processing of information 
• sore throat,
• subnormal body temperature,
• susceptibility to viral infections with prolonged recovery periods
• sustained/switching/divided attention reduced
• sweating episodes,
• twitching,
• unrefreshing sleep
• urinary urgency or frequency,
• vivid dreams/nightmares

The COMPASS 31 indicated that 50% have symptoms consistent with orthostatic intolerance. About 43/69 (62%) had Epworth sleepiness scores ≥10, ie, consistent with excessive daytime sleepiness, 26/69 (38%) had significant anxiety and 22/69 (32%) depression measured by HADS A & D. Quality of life is significantly impaired in those with Fukuda criteria CFS (QLS score 64±11) with significant negative relationships between quality of life and fatigue (p<0.0001), anxiety (p=0.0009), depression (p<0.0001) and autonomic symptoms (p=0.04).

Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study. [2019]

Bottom Line

I am still in a “flare” dealing with a rollercoaster of the symptoms above. Most patients when ask for symptoms will give a list of 3-4 only. If you walk these patients thru the above list, the numbers increase — often to several dozens — the symptoms listed are the worst ones and the other ones tend to be ignored. I do not have just one or two of the above, but a pretty good list when waxes and wanes throughout each day.

For myself, when in a flare, I will enumerate the list and then “cherry pick” active symptoms looking at the audience who will be hearing it. Often patients will just list they dominant symptoms, “tiredness, sore throat” etc which will often be interpreted by others as low significance.

For example, instead of the wordy “Postural orthostatic tachycardia syndrome (POTS)” I would simply say tachycardia (verified by a pulse of 170 on my monitoring smart watch). A simple neurological symptoms usually go over better than “slow mental processing”, “mental fatigue”. If someone presses more, I will respond with I have ”
“hypoperfusion in the brain – my brain is not getting enough oxygen” or more technical “hypoperfusion in the brain according to SPECT Brain Scans”. I know of CFS patients that have had transient ischemic attack (TIA), especially after a stressful event.

Of course, the problem is having diminished executive decision abilities — so patients make poor presentation of their symptoms to others 😦

The model that I am assuming for conditions like CFS, is some event triggers a microbiome shift which persists in a dysfunctional state. A few of these events are well known, or suspected:

• Infection (viral or bacteria) – best documented example is Bergen Norway – giardiasis
• Stress:
  • ” an integrative conceptual model is proposed in which stress-induced enteric dysbiosis and intestinal permeability confer risk for negative mental health outcomes through immunoregulatory, endocrinal, and neural pathways.  ” [2017]
  • PTSD (Articles)
• Vaccinations – in theory should, no studies done on microbiome shifts before and after vaccination (yet!). If the vaccination works, it has been shown that depends on the microbiome being right [2017]
• Antibiotics or antivirals

In reviewing a news article, The fascinating effect a stroke has on the gut microbiome, reporting on the International Stroke Conference, 

Prior research from the same team revealed a stroke does have an immediate effect on the microbiome, but how long these effects last for was not known. Using animal models the researchers conducted microbiome examinations three days, two weeks and four weeks following an induced stroke…. A notable decrease was seen in Bifidobacteriaceae, a common bacteria found in probiotics, up to four weeks past the stroke, while increases were seen in Helicobacteraceae across the same observational period.

Another intriguing change in the gut seemingly brought on by the stroke were notable abnormalities in intestinal tissue. Normally in healthy animal models this tissue appears structured in orderly ways, almost like branches of coral. However, close examination up to four weeks post-stroke revealed the villi, structures that project off the intestinal wall, were scrambled and visibly quite different from the healthy models.

The fascinating effect a stroke has on the gut microbiome,

The real interesting aspect of the article was:

Another compelling study from 2017 suggested magnetic simulation to specific areas in the brain can affect the composition of a person’s gut microbiome.

The fascinating effect a stroke has on the gut microbiome,

The question is then — do cell phones create magnetic fields (that could potentially stimulate the brain). The answer is yes:

Among the valves tested, the settings of the Strata valve, the Hakim valve, and the Sophy valve were affected by magnetic flux densities of 6.0, 17.5, and, 40.0 mT, respectively. Cell phones produce a magnetic flux density of 3.0 to 40.0 mT. 

Effect of cell phone magnetic fields on adjustable cerebrospinal fluid shunt valves [2005]

And for Wifi, the evidence is cleaner still:

The pure cultures of Listeria monocytogenes and Escherichia coli were exposed to RF-EMFs generated either by a GSM 900 MHz mobile phone simulator and a common 2.4 GHz Wi-Fi router. It is also shown that exposure to RF-EMFs within a narrow level of irradiation (an exposure window) makes microorganisms resistant to antibiotics. 

Evaluation of the Effect of Radiofrequency Radiation Emitted From Wi-Fi Router and Mobile Phone Simulator on the Antibacterial Susceptibility of Pathogenic Bacteria Listeria monocytogenes and Escherichia coli. [2017]

Bottom Line

While we know that all of the above can cause microbiome shifts, most people microbiome returns to normal. Most people. As a statistician, I know that as the number of low risk events increases, the chance of a significant event cumulates.

We cannot say: Wifi, vaccination etc causes any specific long term autoimmune conditions, it just increases the risk — like smoking does. There are people who seem immune to the effects of smoking (like the Comedian George Burns who lived to 100 and love smoking cigars).

subtitle: A probiotic that is giving me a nice herx

One aspect of chronic fatigue syndrome is having stress intolerance [US Gov Job Accommodation Site], this is also an aspect of autism spectrum [US Gov Job Accomodation site]. I have both. I was very fortunate back in high school being part of a very gifted child program which included research psychologists evaluation of the selected students (only 0.3% of the students were selected. Mensa is 2%). These psychologists noticed and remarked to me, something that was very unusual for this population — I was stress-dysfunctional. Autism Spectrum was largely unknown in those days. This simple observation altered my behavior for school and subsequently for work.

The unfortunate aspect is when you provide literature to your supervisors (for example the above two links) — some do not get stress intolerance — especially in IT with individuals that function best with stress. They expect everyone to be like themselves.

I have been trying to exit such a situation for a month — especially when a neurological symptom appeared, which disappeared once I got a few days away from work. This symptom was a new one for me, but a sweet one for early warning. The symptom is nicely described as “Some patients will experience paralysis of the lower half of the face leading to drooling, change in speech quality, sagging of the corner of the mouth.” [Src]. With my model it means that metabolites being produced from the stress are impacting my neurological system.

Last Friday, the supervisor went into panic mode and hit me with too much stress (and unrelated to my actual code/work). At 10AM, I could feel a state change in the body and booked off sick for the rest of the day (and still off sick). The usual roller coaster of symptoms seen when leaving remission: difficulty understanding, quick mental fatigue, circulation issues, over a dozen bowel movements a day, tachycardia, dysregulation of blood pressure (POTS etc), atypical spells of depression, problems with sentence construction, etc.

A question arises on interventions — especially given a recent study in Cell finding that intervention after antibiotics is counter productive — how much do you attempt to fix things? I did my usual stress herb — Ashwagandha which appears to impact stress related bacteria (see this list of what it impacts). I happen to recall a recent post on human sourced probiotic mixtures — one of which contained Lactobacillus Fermentum (Post#1 and Post#2 on it) – which happens to be available at my local co-op.

I am trying to keep to few interventions – so not looking for the usual high dosages of antibiotics that I have needed in the past.

I am on day 2, I must say that I am impressed because I am experiencing the classic herx pattern for a few hours after taking it. That’s it — just sharing an observation. Every strain is human sourced, so there is some chance of some taking up residency – but regardless, it seems to be effecting change.

For a man, the above is not expected — but I wanted to have the lactobacillus fermentum.

As for myself, I have lots of sick time and unused vacation, emailed some key people on the issue, so I expect things to be healthy resolved. If not, then time to move on (putting up with stress is not a viable option).

Bottom Line

Enduring stress is not a viable option with stress intolerant conditions.

A reader asked me to assemble a list of known DNA mutations. In my post on Multiple Chemical Sensitivity we see that the MTHFR gene is associated with abnormal blood clotting ( US National Library of Medicine). Coagulation issues are strongly associated with brain fog.

Since this type of question often leads to “where can I get appropriate testing done?” Coagulation issues are outside of “my wheel house” except for being aware of them and knowing about the specific mutation that I have.

Thrombophilia Mutation Panel seems to be the most detailed all-in-one test:

• Factor V deficiency
• Budd-Chiari syndrome (BDCHS)
• Homocysteinemia due to MTHFR deficiency
• Ischemic stroke
• Neural tube defects, folate-sensitive (NTDFS)
• Pregnancy loss, recurrent, susceptibility to, 2 (RPRGL2)
• Prothrombin deficiency, congenital
• Recurrent abortion (RPRGL1)
• Schizophrenia (SCZD)
• Thrombophilia due to activated protein C resistance (THPH2)
• Venous thrombosis (THPH1), lab preferred: Thrombophilia

For general background read:

• Overview of Coagulation Disorders
• Overview of Thrombotic Disorders
• Note that for some conditions, i.e. Prothrombin (Factor II) 20210 Gene Mutation
  • “The diagnosis is made by genetic analysis of the prothrombin 20210 gene using blood samples. ” which suggests that 23AndMe style information may be insufficient.
• There are some mutations that only occurs in people with Jewish DNA.

A Lab that appears to offer a reasonable set of tests

A reader asked me about this lab, and reviewing what they are doing, it’s a reasonable panel. I would suggest doing BOTH tests

• THROMBOPHILIA GENETIC PANEL (this is a ONE TIME test — it tests DNA)
• HYPERCOAGULABILITY PANEL

There are likely other labs that offer similar.

Allergy of what may be occurring

Your body is like a family. Job and expenses are balanced, in fact, the family may be able to do some savings. A sickness comes along and the body/family deals with loss of income for a few weeks and higher medical expenses. The savings are gone and the family borrows. The family gets over the sickness and get back to work. Unfortunately, the family debt keeps growing and growing. Similarly, the body’s coagulation system is working as it was before. The sickness triggers coagulation (expenses) and the available income is not enough to clear it. The sickness is gone, but the side effect persists. Some families may be able to get rid of the debt over time (spontaneous remission), others gets deeper into debt, going down hill.