I usually avoid getting too involved with readers — for a simple reason: this blog and the microbiome analysis site is already a time consuming evening and weekend gig (full time IT day job). I am not a physician or medically trained, so “patient history” is an inappropriate term to use.
This reader came via LinkedIn (where I have started posting items from this blog to confuse all of my technical nerd contacts 😉 ). The number of issues, technical documentation provided, and detail history made if a good review example.
The last time I felt great was in high school, I was eating lots, exercising 2-3 (swimming) hours a day, sleeping well, studying hard. However, even though I was doing well, after a swimming race, I had trouble getting out of the pool and was too tired, no other swimmers were like that. I knew that at age 15 I was sick due to the excessive fatigue.
Ding: typical CFS has a “day-after exhaustion” after exercise. I recall my Stress ECG Test — absolute flying colors. Next morning, horrible. This hints that something else may be in play.
I had mercury fillings since I was about 8 years old and in November 2017 I got them replaced and since then my chelation treatment (DMSA) has been easier in terms of symptoms. My symptoms started when I started college (2006), I wasn’t getting much sleep due to a noisy heating element and had frequent heartburn[GERD –
gastroesophageal reflux disorders ]. I would sometimes be sad but I attributed this to a lack of exercise. Also, I have had misophonia a year after starting university (started 2006, finished 2010).
Partial sleep deprivation is associated with shifts in 4 bacteria families, and 20 genus (list). Sadness is associated with depression in medical terms. It is associated with 13 genus (diagram). Cross comparing the genus lists, there was nothing in common (suggesting that sleep deprivation and depression are not strongly connected). It does imply up to 33 genus may be altered. For GERD, we can add a few more … :
Although far from comprehensive (only approximately 24 clones were sequenced per sample), the study found Veillonella (19%), Prevotella (12%), Neisseria (4%), and Fusobacterium (9%) to be more prevalent in patients than in controls.Microbiome in Reflux Disorders and Esophageal Adenocarcinoma 
Reminder that I use: “The microecologic disease theory, or the “Pathogenic Microbial Community” theory, is a new model in which the entire community contributes to pathogenicity, with no individual community members being classified as pathogens.13,14Dysbiosis is a similar concept that refers to an abnormal state of the microbial ecosystem, dividing commensal bacteria into “protective” and “harmful” species. With dysbiosis, the cause of certain chronic diseases is an upset balance between the two groups.13 ”  This model means that AI/Machine Learning is the best tool for analysis.
Reader’s state: ‘sub-clinical dysbiosis’, that is, most gastroenterologists would state “you are fine — I see no issues of concern”.
After university (2011), I went to Asia for a week and a few months after I came back with a duodenal ulcer (found upon endoscopy), it was a stressful experience both emotionally and sleep-wise since I went through 2 12 hour shifts. I presented with fatigue, blood loss, dark stools, coffee ground vomit, collapse, blindness, urinating in bed, sleep loss, pale skin. I then went on to working in one Asian city for about a year (2012), a year after my initial trip to another Asian city , came back to the USA and became very fatigued when I was in my parents home — especially when I was around the carpets (was there for a few months).
Ulcers are usually associated with Helicobacter pylori. (one study found only 27% of these ulcers had H. pylori ). We do see via DataPunk, a large number of bacteria that clusters with (i.e. if you have H. Pylori, you will often find these)
I went back to Asia to a number of cities (after Fukushima) and lived there for 2 years and upon using a new teflon pan, I got a headache, was dizzy, nauseated and got tinnitus (2015).
The carpet scenario with the teflon response implies multiple chemical sensitivity. While teflon is ‘normally considered to be safe’, poorly made or overheated pans are known to release “perfluorooctanoic acid (PFOA) ….
it can stay in the environment and in the human body for long periods of time. “[cancer.org] The table below shows the impact of a very closely related chemical.
At this point, my mind go to suggesting an Olestra diet for a few months. YES that ugly horrible synetic fat – Ken, you must be kidding!. Why, see “I would never do this if there was an alternative” in this 2013 post. He is already doing chelation treatment (DMSA) — this is a different form of chelation. I have seen it work for MCS persons after a chemical exposure — they return to normal much faster.
When I came back to the USA and started working in my US office, I started zoning out in the first weeks, then the next week I started having a burning feeling in my tongue, then 2 weeks after I started having headaches, memory loss, and stomach pain. Within 1-2 months, I had short and long term memory loss, I lost sleep, I became fatigued and even though exercise helped in alleviating these symptoms some days I was too tired, then I had nausea, non-blood vomiting, and ulcer symptoms. On a trip to other coast for work, I didn’t sleep well due to some fragrance in the hotel room and being woken by a fire alarm at 3am, I woke up, couldn’t breath, was about to pass out and began losing my vision and ringing in my ears started but I managed to get to some water, prevented passing out, and fell asleep (February 2017).
In fact, a similar set of symptoms appears right before I went to the ER during my first ulcer (2012) but in that case, I lost my sight and hearing and hit a wall, I crawled back to bed based upon feeling my environment. During the second day of the business trip, I noticed a bloody stool and went to a clinic whereby a rectal exam showed I did have blood in my stool, but the doctor said it wasn’t much and I continued on for a week bleeding. During that week, I had flu-like symptoms and my primary care doctor ran some blood work. I got a call from the doctor the next day to go to the ER immediately since I lost half of my blood/hemoglobin, which explained the extreme fatigue and almost passing out. I did, they found a large duodenal ulcer but it was so big they didn’t cauterize it and they also found a hiatal hernia. I continued on with my work in the office after taking some medical leave. I continued having symptoms and eventually was given work from home, but when I came to the office my tongue felt like it was on fire within 15 minutes.
I think it was due to the carpets and did an air quality test that found the VOC’s were high but not higher than the legal limits, no formaldehyde, almost no mold. I got a diagnosis of multiple chemical sensitivities but was dissatisfied with this since I thought something else was at play. I went to see a naturopath in SF since I found a yelp review of someone whose symptoms mirrored my own and that person claimed she was cured by this particular naturopath. Dr. [withheld] put me on a treatment to fix my gut problems, diagnosed me with heavy metals poisoning, and then put me on treatment for the poisoning. I did that for a while and it helped temporarily but I had the same symptoms again.
I then went to another naturopath who suggested that my phase I liver detox was doing too much and my phase II liver detox wasn’t doing enough and his treatment helped me for a while but it seems to not be doing much now. Everytime after I do chelation, I would feel better initially then usually go back to the way I was before I did the chelation a few days after. I did read Cutler’s “Amalgam Illness” and “Hashimoto’s Protocol” by izabella wentz. I did another treatment with QuickSilver Scientific’s “Deluxe Detox Qube”, once again, it helped for a while but then stopped working.
Many experiments later, I noticed that my tongue was white and when I scrapped it my chemical sensitivities were not as bad. I started scraping my tongue, gargling with baking soda and trisodium phosphate, which helped but didn’t cure my chemical sensitivities. I started consuming 2 tablespoons of food grade diatoms and that got rid of more of my chemical sensitivities but I was still sensitive (burning of tongue, headaches, memory loss, fatigue) to perfume.
I know I haven’t gotten rid of candida completely. I have candida, nystatin helped in getting rid of my chemical sensitivities and tinnitus almost completely for a few days but then my tongue was coated in white and my chemical sensitivities were getting worse.
I try to crowd it out with probiotics but it doesn’t seem to work too well. I got my thyroid tests back and they may indicate autoimmunity but according to some thats a reaction to candida. I took diflucan and then later itraconazole to try to treat the toenail fungus, I did have a history of jock itch but that’s gone and I also have dandruff (some naturopaths think all 3 conditions are connected). The itraconazole seems to be working and the probiotics seem to be working on my unhealing abrasions on my body.
I got tested for EBV, turns out I had it in the past and was actively infected at the time of the test but the only symptoms I had related to EBV was fatigue, I took valganciclovir and had less fatigue after the course of treatment. I took metronidazole, tetracycline for a possible ulcer that occurred recently (sleep deprivation). I tried doxycycline and while being on it in the beginning, I got much more access to my intellect and was able to work/study for 6 hours/day straight and exercise for hours/day. It was similar to when I first started liquid nystatin. I still have high TPO antibodies which we at 51 when I got the mercury diagnosis, went up to 100 after a year of treatment and then after the nystatin treatment, it went down to 70. I suspect that I have multiple conditions still left to treat such as SIBO and parasites but am seeking someone to help me get back to normal.
My hypothesis is that there a bacterial dysbiosis in the brain (interpret that as you may). There may be benefits from trying antibiotics and other substances that will pass easily thru the blood-brain barrier. There is an excellent article on this Characteristics of compounds that cross the blood-brain barrier  One simple take-way is items with LOW Molecular weight. For myself, a SPECT scan was (mis)read as Alzheimer’s during my last major episode.
Here are my present problems that I seek help with:
- toenail fungus
- memory problems/brain fog
- I am frequently too cold
- Fatigue, still sometimes
- Infections/scars on my lower legs
- Tinnitus and sometimes partial deafness of right ear
- Multiple chemical sensitivities such as to perfume, laundry detergent, cleaning solutions, fragrances/air fresheners such as cars.
Suggestions to discuss with your medical professionals
As always, not medical advice, just personal observations that could be relevant.
This can originate from many causes. For myself, coagulation is a major component.
- My MD accepted this when I took the maximum dosage of aspirin (per bottle) for 10 days and saw the difference. Subsequently,
- Deep coagulation testing by a lab that specialized in that only
- Low dosage heparin (originally injection, but we found sublingual worked just as well)
- Racetams (Piracetam especially)
- Other blood thinners or items that reduced viscosity of the blood.
- At one time, nurses were running out of places to draw blood from me because it was so thick.
- Get a SPECT scan (not MRI, a SPECT) — my family physician referred me for my last one. A relative got referred to Dr. Daniel Amen from a psychologist that works with him. Both scans were similar results.
I am curious if there was any testing for which particular fungii it is? As well as susceptibility to various treatments. I recall reading that mercury exposure results in reduced susceptibility for many bacteria and suspect it may be the same for fungi.
My first take on this is hypoxia (a.k.a. sea-level altitude sickness). Due to low delivered oxygen level to the brain. ” In the elderly with CVD, SDB mediated by hypoxia can be associated with more insomnia and a worse prognosis. ”  . Brain Fog and hypoxia are associated. Back in 2000, I saw the strong correlation between a subset of CFS symptoms and altitude sickness symptoms.
This issue of poor delivery of oxygen and blood would also account for:
- Frequently being too cold
- Fatigue sometimes
- Misophonia and tinnitus: Evidence and evidence gaps in tinnitus therapy
- “the tinnitus symptoms even if hypoxia and oxidative stress play a role in the genesis of tinnitus. “
Infections/scars on my lower legs
This one initially stopped me — because I have had a similar issue which I did not get connected to CFS until now. For myself, using Triamcinolone Acetonide ointment reduced it greatly but I still see some ‘rough spots’. I suspect now , as above, that it is an impeded circulation issue which prevents the body naturally addressing issues. As a FYI, over the last 10 years I have had recurrent sepsis on my lower legs. Do you have any foot neuropathy? I have a little on one toe and associated it nerves dying from a lack of oxygen — hypoxia.
Multiple Chemical Sensitivity
There is nothing that I can really add here that I have not covered in prior posts. I do not have it active at the moment, but did experience it for a few months during an acute phrase. My workplace is very saturated with chemicals (although it was suppose to be chemical free a decade ago) – so much so that coming home from work (because my wife has severe MCS)
- Infrared sauna for 30-45 minutes
- Repeated showers (occasionally vinegar rinse, and vodka rinse are needed)
- Clothes go into a plastic bag and often need to be double washed in vinegar.
I do not react physically, but do attempt to avoid fragrances for the sake of my wife.
Only suggestion is OLESTRA chips at least once a day to remove reside chemicals that may be contributing .. Make sure you read about frequent response (toxic smelling stools etc) before you start.
I suspect that the fatigue as a child may be due to impeded circulation. The ability to clear toxins and deliver oxygen was less than other people. If this is correct, then your microbiome would shift to species liking lower oxygen levels. This suggests that increased oxygen levels (oxygen mask or hyperbaric chambers) may assist.