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The Story Behind this Page

Hi. My name is Jordan, and I’m a 37 year old American man with an ongoing condition known as CFS, or Chronic Fatigue Syndrome

(Please note that clicking underlined words below open a descriptive tooltip you can close by clicking again)

Even though I avoid using the word “chronic” (it’s discouraging) the term CFS/ME comes closest to describing my symptoms, and is a rallying point for some amount of targeted research and innovation. My condition is unique, like many sufferers report. While it comes with plenty of fatigue, it’s an entire bundle of symptoms including brain fogBrain FogMy mind often feels detached and slow, especially early in the day. Thoughts will feel muddy and I will lack the ability to deliberately think, which makes it much harder to be productive and do moderate-high level mental work.

Often feel “underwater”, disconnected from surroundings in a somewhat dazed dreamlike state. I’ll walk into a room to get something and forget why I’m there. When it’s really bad I sometimes feel like there is a processing delay between looking at something and assessing it. I also have some degree of ADHD (have not taken anything for it since being on adderall in high school). My memory also feels weak.

Maybe once every 2-4 weeks, I’ll have a day where I’m very sharp and I remember what it’s like to have clarity. It’s a feeling that my mind is both sticky (like glue when trying to access) and slippery (like crisco, when trying to retain).

For a while I would use 200mg of Ginseng for a kick (was great for low key productivity) but it stopped helping. I currently don’t have any reliable way to feel clarity.
, insomniaSleep IssuesMy sleep is often light and restless troubled and only lowers my fatigue maybe 10-15%.

It seems like my mind thrashes against my attempts to form routines. I can go from falling asleep 12 midnight naturally to other nights not being able to calm down until 3AM (some days my mind unfortunately only wakes up very late at night, and in excitement I ride the wave as long as I can).

I’ve taken melatonin, CBD oil and klonapin to help with this. I’ve also taken sleep studies which showed no evidence of apnea. Tracking my sleep with apps, it revealed a good amount of REM sleep. In addition, it doesn’t seem like sleep has a strong correlation on feeling energetic and sharp (though lack of it can make the baseline worse) which is why I place it downstream from other things on the list.

I often wake up in the morning, and after naps feeling anxious and bewildered.
, anhedonia/depressionAnhedonia/DepressionI’ve experienced a persistent mild depression (dysthymia) for over 10 years.

There is often a feeling of “gravity” in my face, and/or a sensation like a vacuum cleaner is sucking the vitality out my insides. Anhedonia is a word I’ve seen around, and it definitely seems like joy and enjoyment even of “sure things'' such as playing guitar are weaker than they used to be in my early 20s.

Things have not been great overall since my early 20s. I place this last because I see happiness as a chemical byproduct of the feedback loop between better circumstances and ability to use my brain as intended. When I have energy and am productive, I’ve seen my mood jump 1+ points, making me wonder how much of it is feeling trapped in my circumstances and “not myself”.

I took SSRI’s throughout highschool, and in short bursts afterwards but haven’t seen anything good come of it.
and generalized anxietyAnxietyI’m often mildly to moderately anxious. Lately worst in mornings. It manifests as a strong heartbeat, racing thoughts. It doesn't have any perceptible trigger, but seems to get worse when exerting myself against the brain fog and fatigue.

It’s not new but has gotten worse in recent months, before which depression/fatigue seemed the bigger issue. While it’s never full blown panic, I’ll feel a rapid, intense heartbeat. The effect ranges from making me feel irritable and “darty” like a chased animal to just making it hard to concentrate.

I take a low dose of klonapin (0.25 to 0.5mg) 1-2x a week (mostly to sleep) and other than that usually take 100-200mg of L-Theanine. Occasionally I’ll take Lavender. These all help take the edge off but make me feel tired/dopey. Nights tend to be better.

I suspect that the anxiety is downstream from brain fog, as when I’m unable to think straight I feel out of control like a stationary bug about to be squashed.
.

The trouble is that CFS is a shorthand descriptor for a set of symptoms, all of which which can have a wide range of causes. There are at least 10 theories for what could cause it, and nothing I have discovered so far has narrowed it down far enough.

I named this site “Operation Fog Free”, not because the fog is the only symptom I care about. But if only one symptom could vanish in a puff of smoke, I would nominate that one, at his has been the most destructive to my ability to function. Even simple life planning is very hard without clarity, and being in public highlights a strange feeling of depersonalization where I feel disconnected like I’m in a boring dream. Spooky stuff, and unlike anxiety, there is nothing I’ve found to even provide temporary relief from it.

But fatigueFatigueI’m tired alot, and many days I feel like there is a vacuum cleaner inside of me sucking up any energy. I also get tired easily following meals or exertion.

I need naps most days to function and they often don’t help that much. It sometimes seems like there is a lingering fatigue even good sleep doesn’t correct. Granted I haven't been getting much exercise, but when working out lifting heavy weights 3X a week between June and December 2019 I saw no substantial difference to energy or mood.

I’ve also not seen a strong correlation between energy and sleep or diet (unrestricted, eat a mix. Haven’t experimented here in a while). I’m not a big caffeine user as I’ve found the dose it takes to make me energetic also makes me jittery. I was taking an energy combo supplement that used to help with fatigue, but I’m trying to not be reliant on stimulants unless I need an usually sized burst of energy.
, insomniaSleep Issues My sleep is often light and restless troubled and only lowers my fatigue maybe 10-15%.

It seems like my mind thrashes against my attempts to form routines. I can go from falling asleep 12 midnight naturally to other nights not being able to calm down until 3AM (some days my mind unfortunately only wakes up very late at night, and in excitement I ride the wave as long as I can).

I’ve taken melatonin, CBD oil and klonapin to help with this. I’ve also taken sleep studies which showed no evidence of apnea. Tracking my sleep with apps, it revealed a good amount of REM sleep. In addition, it doesn’t seem like sleep has a strong correlation on feeling energetic and sharp (though lack of it can make the baseline worse) which is why I place it downstream from other things on the list.

I often wake up in the morning, and after naps feeling anxious and bewildered.
, anhedonia/depressionAnhedonia/Depression I’ve experienced a persistent mild depression (dysthymia) for over 10 years.

There is often a feeling of “gravity” in my face, and/or a sensation like a vacuum cleaner is sucking the vitality out my insides. Anhedonia is a word I’ve seen around, and it definitely seems like joy and enjoyment even of “sure things'' such as playing guitar are weaker than they used to be in my early 20s.

Things have not been great overall since my early 20s. I place this last because I see happiness as a chemical byproduct of the feedback loop between better circumstances and ability to use my brain as intended. When I have energy and am productive, I’ve seen my mood jump 1+ points, making me wonder how much of it is feeling trapped in my circumstances and “not myself”.

I took SSRI’s throughout highschool, and in short bursts afterwards but haven’t seen anything good come of it.
and anxietyAnxiety I’m often mildly to moderately anxious. Lately worst in mornings. It manifests as a strong heartbeat, racing thoughts. It doesn't have any perceptible trigger, but seems to get worse when exerting myself against the brain fog and fatigue.

It’s not new but has gotten worse in recent months, before which depression/fatigue seemed the bigger issue. While it’s never full blown panic, I’ll feel a rapid, intense heartbeat. The effect ranges from making me feel irritable and “darty” like a chased animal to just making it hard to concentrate.

I take a low dose of klonapin (0.25 to 0.5mg) 1-2x a week (mostly to sleep) and other than that usually take 100-200mg of L-Theanine. Occasionally I’ll take Lavender. These all help take the edge off but make me feel tired/dopey. Nights tend to be better.

I suspect that the anxiety is downstream from brain fog, as when I’m unable to think straight I feel out of control like a stationary bug about to be squashed.
don’t lag too far behind in severity. I would gladly accept relief from any of them

I’m creating this living document not for sympathy but in hopes somebody reading this can help either directly or indirectly.

Are these all “new”? Not exactly. My health journals have shown me some of these symptoms have existed for me in varying degrees, sometimes with different names over the last 10 years. They made life difficult, but I was still able to function professionally and personally through it all, while still wiping out occasionally.

This changed in March of 2020, after getting COVIDMy COVID ExperienceIt involved about 5 days of fever, extremely low energy and I didn't feel alright for 2 weeks, 'normal' for 3-4. I still get some sensations in my upper nasal cavity I didn't have before it. If I hadn't had variations of fatigue and brain fog before getting it, I would be more on board with the 'long COVID' explanation. But it's possible COVID made something pre-existing worse. . Easy things became hard, hard things became almost impossible. Symptoms became less intermittent than they were in the past. After losing my job in October, I realized this could not go on this way and I decided to make health a priority.

I spent most of 2021 consulting with various integrative health and functional medicine docs, as my allopathic doctors could not find anything beyond D and B12 deficiencies.

I tried several supplement regimens, and took alot of recommended standard and nonstandard tests and bloodwork. There were some promising findings, but sadly none of the regimens to address them worked.

The paradox of brain fog is- to stay proactive in addressing it takes cognitive power you don’t have, kind of the way it takes vision to look for your eyeglasses. I feel I’m running out of steam, so every bit of help and encouragement is welcome, and I’m willing to try anything with any logic behind it.

If you have ever suffered from an illness with an unknown cause or treatment, you might know how isolating it is. It’s an extremely unfair fight, akin to swinging at a ghost

At this point, my hope is entirely manufactured, when I even have the ability to do so. But I feel there are many things I’ve yet to try, and I’m optimistic when I solve one of these things, I’m likely to see improvement or resolution in multiple symptoms.

What I would like the most is to find a practitioner who has who has helped enough people solve CFS and/or brain fog to call it a specialty. This would help me to outsource some of my missing brainpower, and keep moving forward.

If you know a practitioner with a great record for helping people like me, or are that person, please reach out here. In the interest of being concise, I highlighted certain terms where you can read details using tooltips, and also created a separate FAQ page for some common questions practitioners have asked.

However, I’m receptive to advice from anyone. If you are just a civilian who notices something I may have missed, I would still appreciate the advice. Drop a comment in the Suggestion Box. 

On most medical internet forums, people appear to ask questions in a period of struggle, vanish either when they stop fighting, or when they get better. So you’re left reading about the acute period of action and struggle, and not the happy ending, if there is one. It doesn’t make for a very inspiring ratio.

So when I overcome this, the website will remain a monument to my struggle and victory even after I achieve it. Getting better is just the beginning of my responsibility. I will have a great karmic debt to lift others in the same predicament. Maybe it will define a future life path, maybe not, but at a minimum, I plan to help others find hope and relief from similar in some form for the remainder of my life.

Thank you for reading. Whether or not you are able to help, I appreciate it.

Tests and Bloodwork

8/21 Homocysteine 9.0 mcmol/L, Methylmalonic Acid, Serum (MMA) 128 nmol/L

7/21 Thyroid & Renal Panel, Ferritin, CBC, B12/Folate, Magnesium

1/21 Comprehensive Bloodwork

4/21 GI Map (+ Additional individual tests below)

  • Negatives: CMV (igg/igm), LYME DISEASE AB, TOTAL W/REFL WB (IGG, IGM), EBV (early antigen), Saliva Cortisol test normal
  • Positives: HHV-6 (iGG 1:40), HSV-1 (5.96H)

5/21 Doctor’s Data Fatty Acids Test

9/21 OptimalDX Profile of Bloodwork 10/11/21 Additional: Estradiol 5.2 pg/ml

12/21 Labcorp Blood Draw

Things I've Tried (Worked)

Black Seed Oil (Nigella Sativa)- Did not work for morning anxiety, but good for night time anxiety, mild sense of well being, and seems to make my body feel less inflamed too.
Lavender (for anxiety)- Was a life saver when having panic
Ashwagandha- Good for anxiety, but makes me demotivated
Kratom (For energy, 2019, haven't tried in a while)
Fasoracetam- Stimulant. Best brain fog buster I have found thusfar
Clonezapam/Klonapin- Helps with both sleep and anxiety. Love it, but have seen tolerance grow quickly and don't want to lose it as a red button. 

Things I've Tried (Neutral/Not Sure/Didn't Work)

Intense exercise: Worked out 3X a week (lifting) from June 2019 until January 2020. Best physical shape of my life but It had no significant impact on energy or mood.
Multivitamins (Rainbow Light Mens)
B12 shots/supplements- Tend toward deficiency, but got my levels up using supplement to no effect
Vitamin D3 supplements- Tend to be deficient but  even after getting it up to 60s with 10K daily, no major difference
Fish Oil/High SHA/EPA supplements
Alpha GPC

Blood Type B Diet
Gluten Free Diet
SAM-E
NAC
St John’s Wort
SSRIs(many), Buproprion
Magnesium
Methylene Blue (4-8mg)

6 week GI antiparasite/dysbiosis regimen of (all Biotics products) ADP Emulsified Oregano, Dysbiocide, and Saccharomyces boulardii. No major effects but bowel movements were smoother, less gas
Paleo-vegan (Pegan) diet hybrid (1.5 months)
Topical Testosterone cream
Malabsorption Regimen- Oxbile, NTFactor Energylipids, Cod Liver Oil
Panax Ginseng leaf used to give a focus lift, but stopped working very well in 2020.
High Dose Niacin, didn’t take regularly or for long but experimented briefly with up to 500. I flushed with everything above 50mg, and 500 was bad (felt burning sensations on skin for over a day after)
Turmeric/Curcumin (brain health version, as well as raw powder)
Lithium Orotate- Took all amounts from 1-5mg. 4-5mg is a decent anxiety buster but creates a mild burning sensation in my skull and lingers too long to qualify as mainstay
Doxepin- Took for sleep. Seems to make later sleep better, but harder to fall asleep (2-3 hours). About a draw. Seeking alternatives

Things I've Tried (Negative Impact)

Aniracetam
Armodafinil- seemed to make me jittery without giving me energy.
Mucuna Extract- Sedative/depressant
Bacopa- somewhat calming but irritable
Buspar- Got very nauseous
Effexor- Caused so much anxiety even at low-ish dose I needed to take daily benzos
Lions Mane- Have taken it in various forms, and don't like how I feel on it
Inositol- Standard 500mg dose seemed to make me very nauseous.
COQ10 (2 days)
Alpha Lipoic Acid (1 day)
Pregnenolone- Seemed to make me irritable/emotional
DHEA- See above
Doxylamine-
Had the worst sleep when I took 25mg.

 

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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