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FAQ

Any allergies?

No, not that I’m aware of

What symptom is highest priority?

Brain fog. Solving it would enable me to work a mental job and also make a better plans surrounding remaining symptoms. However, I suspect symptoms are connected and rising tide would lift all boats in this case.

Describe the brain fog

There is a persistent feeling of mental dullness. Feels like someone poured a sticky thick substance into the center of my brain. Often feel a little dazed and lightheaded. There is a feeling of being both alert and foggy , the way you might be if someone jolted you awake from a deep sleep. Sometimes I forget certain details that I shouldn’t. Thinking on command, especially high level abstract systematic thinking/learning which was a forte of mine becomes difficult to impossible.

It’s never anything worrisome like forgetting my mother’s name, but is enough to make me feel mentally overwhelmed even by simple tasks. This seems to complement my fatigue negatively. I feel this on most days, and it is worst in mornings/afternoons, somewhat better at night. I have many ambitions that require on optimal mental state and this stands firmly in their way.

This often accompanies fatigue, but I almost never feel sharp even when I slept well. My memory also waxes and wanes

When did brain fog start?

I think it became persistent (while still intermittent) post Mono in summer 2014, especially between 2015-2016. It was interacting with bad sleep as well as anxiety/depression issues (those go back further). However, I think I experienced an earlier form of brain fog just connected with my depression in high school. This lifted relatively in my first year of college along with depression. There is some description of brain fog before 2014 but not as frequent or debilitating

Describe the fatigue

It takes a great effort to do the things I need to do, even basic ones. And paradoxically, I’m punished for normal levels of exertion by feeling more tired than if I had stayed still. I have the energy levels of an elderly person, not a man in his late 30s. Sometimes walking around I’ll have a feeling like there is a vacuum sucking the energy from the middle of my body making me want to stop standing.

When did fatigue start?

I have never been a good sleeper, or what you would call a “high energy person” even going back to childhood. I was fatigued and underslept much of highschool and frequently tired during the day. But if I got a good rest I could be fine. As far back as I can remember the afternoon nap was a fixture.

Fatigue that lingers became a frequent visitor following an Epstein Barr Virus (EBV, or Mono) Infection in summer of 2014. I got better, though from that point on my journals complain of longer stretches of mysterious fatigue.

Updates

Sleep Experimentation (ongoing)

As is typical to the condition, I experience non restorative sleep. A good night of sleep doesn't set me up for a "good day", but a poor night sets me up for a worse one than normal, so its important not to sleep badly

My goal is to make good sleep something I can achieve "on command", not subject to moods and other things beyond my control

Sleep hygiene will be part of it. But first I need some supplemental help as habits alone so far haven't helped

My latest experiments have been with Benadryl (neutral), Doxylamine (bad) and a drug called Doxepin (at 3mg, seemed to help with later portion of sleep but not much help with onset)

Also experimenting with melatonin, which never fails to make me sleepy but beyond a small dose of 1-2 mg makes sleep pretty weird.

3/22 - B12 Deficiency Program (ongoing)

Have been aware of B12 deficiency since at least 2016

Addressed in 2016 with a month of weekly injections, followed by oral supplementation

Levels got exponentially higher, but no noticeable difference in mood

Would still sporadically supplement, but it became a back burner to other courses of action

In latest bloodwork, levels were around 190, below acceptable range, and doctor prescribed injections

After reading that it could take 6-12 months to repair low B12 levels, I decided it was worth a repeated and more consistent effort, especially since B12 deficiency can technically cause all my symptoms

2/22 : Ketamine Infusions

6 rounds of IV administered ketamine, 2x a week for a total of 3 weeks.

Alleged to help with brain fog, depression.

Was enlightening in some ways but had no perceptible impact on CFS symptoms or even mood

10/21-12/21- Testosterone/Malabsorption Round 1 (Unsuccessful)

First took a topical testosterone cream for 2 weeks, 0 effect. I opted to avoid TRT in favor of addressing the possibility of dietary causes

Doc 2 hypothesizes my low cholesterol/D/B12/A, connected to Low T levels are due to an issue absorbing fats

Prescribes:

Hybrid of hormonal T precursors (DHEA and Pregnanolone) alongside supplements to improve absorption (low
Ox Bile,
NTFactor Energylipids, Cod Liver Oil.

5/21-6/21 (1.5 months) "Pegan" Diet and GI regimen (Unsuccessful)

Following this GI Test, as well as testing for EBV, HHV6 and Lyme, Doc 1 prescribes a dysbiosis/SIBO regimen to address imbalance as well as high Blastocystis (parasite) levels

ADP Emulsified Oregano, Dysbiocide, and Saccharomyces boulardii. No major effects but smoother bowel movements, less gas

At the same time, stopped eating gluten and dairy for a month and a half, started a "Pegan (paleo/vegan)" diet with emphasis on meat and veg

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