ME/CFS
Mild → no benefitIll for 2 years
Debilitated by ME/CFS, no improvement after ALCAR and B6
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 2 years
- Last post
- Mar 2021
In their words
- Condition: ME/CFS
I’d like to know if talking to my doc about CFS makes sense.
In context ↗ - At worst: Mild
I can get a solid work day in even if I feel like shit pretty reliably.
In context ↗ - Now: No benefit
Currently I still experience extreme exhaustion, brain fog and gastroparesis.
In context ↗ - Began after: nothing they could name
These issues had been manageable until January 2019.
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Oak 70616 fell ill in January 2019 with joint pain, cramps, fatigue and brain fog, becoming debilitated by November 2019. In June 2020, after starting ALCAR, they developed migraines with aura, light and sound sensitivity and goiters, and after taking B6 they developed neuropathy, ataxia and shallow breathing. Zinc caused initial anxiety and irritability but later improved joint pain, vision and anxiety; by March 2021 exhaustion, brain fog and gastroparesis were still debilitating.
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What they tried
Also tried
Dexedrine· Helpedmagnesium· Helpedzinc· HelpedKratom· Helpedcannabis· Helped5-MTHF· Helpedsulbutiamine· Helpedprobiotics, fermented food and more fiber· No changecurcumin· No changecaffeine· No changenicotine lozenge· No changeB complex· WorseALCAR (acetyl-L-Carnitine)· Much worseB6 as pyridoxine Hcl· Much worsecreatine· Not saidexercise as much as possible· Not saidBactrim· Not saideating meat regularly· Not said
Their words about each treatment
- B complex · Worse
Tested 1/4th of a B complex containing 10mg B6 and triggered 4 days of migraines, tinnitus and anxiety.
In context ↗ - creatine · Not said
I had been taking B complex and creatine and continued to take these until recently I stopped the B complex.
In context ↗ - exercise as much as possible · Not said
I continued to exercise as much as possible throughout.
In context ↗ - Dexedrine · Helped
Prescribed Dexedrine 30mg / day as needed for ADD which helped a lot.
In context ↗ - magnesium · Helped
I had been taking magnesium with my Dexedrine which helped the side effects
In context ↗ - Bactrim · Not said
I took Bactrim at 160mg/800mg x 2 / day for three months.
In context ↗ - ALCAR (acetyl-L-Carnitine) · Much worse
Day 1 I felt much better than I had in a long time. After 6 days at 750mg x 2 / day I developed
In context ↗ - B6 as pyridoxine Hcl · Much worse
Took 50mg B6 as pyridoxine Hcl as I was told it helps with sleep. Developed intense neuropathy in hands and feet, ataxia and shallow breathing.
In context ↗ - zinc · Helped
Started zinc at 25mg / day, caused anxiety and irritability initially but improvements in joint pain, vision and anxiety developed after a few days.
In context ↗ - probiotics, fermented food and more fiber · No change
Tried probiotics, fermented food and eating more fiber to improve digestion but nothing worked.
In context ↗ - eating meat regularly · Not said
Started eating meat regularly
In context ↗ - Kratom · Helped
It works great for pain, motivation, focus and mood.
In context ↗ - cannabis · Helped
I’m totally useless on cannabis but it’s OK for sleeping.
In context ↗ - 5-MTHF · Helped
It’s called 5-MTHF. Has a pretty strong antidepressant effect for me.
In context ↗ - sulbutiamine · Helped
yesterday I tried sulbutiamine for the first time ... It was honestly amazing, I experienced real, actual, clear, functional sweet sweet executive function!
In context ↗ - curcumin · No change
Tried curcumin and no luck with that.
In context ↗ - caffeine · No change
Today I took my ADD stimulant, caffeine and a nicotine lozenge and still have absolutely no motivation or focus.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| January 2019 | joint pain, cramps, fatigue, brain fog beganJan 2019 Started to experience joint pain mostly in the knees and cramps in calves. This disrupted my sleep and I also experienced intense fatigue, brain fog and loss of libido.In context ↗ |
| November 2019 | symptoms became debilitatingNov 2019 Joint pain, fatigue and brain fog eventually became debilitating.In context ↗ |
| June 2020 | worse after ALCAR and BactrimDiscontinued Bactrim and ALCAR but it took weeks for symptoms to improve.In context ↗ |
| September 2020 | zinc eased joint pain, vision and anxietycaused anxiety and irritability initially but improvements in joint pain, vision and anxiety developed after a few daysIn context ↗ |
| March 2021 | still exhausted, foggy and gastropareticCurrently I still experience extreme exhaustion, brain fog and gastroparesis.In context ↗ |
Adverse events
- Cannabis (THC, marijuana)“I’m totally useless on cannabis but it’s OK for sleeping.” In context ↗ Side effects
- L-carnitine“After 6 days at 750mg x 2 / day I developed: -Migraine with aura -Sensitivity to light and sound -Constipation -back pain -restless sleep -Acne -Intense brain fog -Depression and anxiety -Goiters -Dry mouth / Dry eyes -Horse throat” In context ↗ Side effects
- “Developed intense neuropathy in hands and feet, ataxia and shallow breathing.” In context ↗ Nerve pain
- “The next day I had cracked skin in the corners of my mouth and dandruff.” In context ↗ Side effects
- Zinc“Started zinc at 25mg / day, caused anxiety and irritability initially” In context ↗ Mood or psychiatric effects
- Vitamin B complex“Tested 1/4th of a B complex containing 10mg B6 and triggered 4 days of migraines, tinnitus and anxiety.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityNeuropathy & tinglingPain & fibromyalgiaSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Pain & fibromyalgia
Started to experience joint pain mostly in the knees and cramps in calves
In context ↗ - Brain fog
Currently I still experience extreme exhaustion, brain fog and gastroparesis.
In context ↗ - Sleep problems
This disrupted my sleep and I also experienced intense fatigue
In context ↗ - Headaches & migraine
Migraine with aura
In context ↗ - Neuropathy & tingling
Developed neuropathy like issues in left cheek and right thy
In context ↗ - Gut problems
I’ve also developed delayed gastric emptying over the last few months.
In context ↗ - Light & noise sensitivity
Sensitivity to light and sound
In context ↗ - Anxiety & low mood
I’ve dealt with depression and ADD my whole adult life but it’s been different the past two years.
In context ↗ - Breathlessness
ataxia and shallow breathing
In context ↗