ME/CFS
Severe → much betterIll 15 years before improving or writingNeeds ongoing treatment
ME/CFS: fatigue, brain fog, depression much better after probiotic and antioxidant
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Nov 2021
In their words
- Condition: ME/CFS
It was about 2 years into what I now know is CFS that symptoms became very intense.
In context ↗ - At worst: Severe
I had severe chronic fatigue with cognitive difficulties.
In context ↗ - Now: Much better
I have to take 7.5 mg methylfolate every day, 15 years after infection, to feel closer to normal?
In context ↗ - Began after: glandular fever or EBV
It's like Mono never ended.
Read from 44 of their posts and comments; links to the 26 this page draws on
Summary
Crocus 28715 fell ill around 2007 after a mono-like infection, with fatigue, brain fog and depression that became intense about two years in. Zinc helped for a while; a multi-strain probiotic plus an antioxidant cocktail left them mostly recovered by 2017. They still needed 7.5 mg methylfolate daily in 2021 to feel closer to normal, and stopped 1.5 mg LDN after severe depression.
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What they tried
What they credit
UVB light / sun exposure· Helped a lotzinc (ZMA)· Helped a lotzinc (ZMA)· Helped a lotmulti-strain probiotics (Renew Life)· Helped a lot · mainB. infantis (Align)· Helped a lot · mainhormonal birth control· Helpedmethyl folate / Deplin· Helped · wore offL. Rhamnosus / L. Reuteri· HelpedNAC· HelpedCo Q 10· HelpedAcetylcarnitine (ALCAR)· Helpedglutamine· Helpedalpha lipoic acid (ALA)· HelpedPQQ· HelpedQuercetin· HelpedMagnesium maltate· Helped
Also tried
super hot baths with Epsom salts· HelpedAdderall· HelpedKrill oil· HelpedCurcumin pills· Helpedsupplemental dietary fiber· Helpedthigh high compression stockings and fluids (Liquid IV, Gatorade, pedialyte)· Helpedthigh high compression stockings and fluids (Liquid IV, Gatorade, pedialyte)· Helpedtonsillectomy· HelpedCBT· Worseantidepressants· Worselow dose naltrexone (LDN)· WorseAntibiotics (unspecified)· WorseCannabis (THC, marijuana)· Not said
Their words about each treatment
- UVB light / sun exposure · Helped a lot
I can make my symptoms almost completely disappear if I spend a lot of time outside.
In context ↗ - zinc (ZMA) · Helped a lot
I've search high and low to figure out how and why zinc improved things for me for so long.
In context ↗ - CBT · Worse
I found CBT to be counter productive and harmful.
In context ↗ - hormonal birth control · Helped
Getting back on hormonal birth control seemed to help the CFS but didn't make it go away by any means.
In context ↗ - methyl folate / Deplin · Helped
So I'm one of those people who greatly benefitted from taking methyl folate to restore proper methylation levels.
In context ↗ - super hot baths with Epsom salts · Helped
I started taking super hot long baths, I guess almost instinctively, because it made me feel better.
In context ↗ - antidepressants · Worse
Antidepressants only make me feel worse but I don't think they trigger a relapse if that's what you mean.
In context ↗ - Adderall · Helped
Just got on adderall and it helps a bit as long as I don't over do it.
In context ↗ - low dose naltrexone (LDN) · Worse
I've just started to take it. It seems to be helping but I have yet to get up to the appropriate dose of 3mg.
In context ↗ - multi-strain probiotics (Renew Life) · Helped a lot
Personally for me, the only probiotic that has worked is Renew Life with 16 strains and 80 Billion parts.
In context ↗ - B. infantis (Align) · Helped a lot
A probiotic with B. Infantis was the answer for me, but I'm not saying that everyone else CFS is caused this way.
In context ↗ - L. Rhamnosus / L. Reuteri · Helped
Quecertin and the probiotic L. Rhamnosus.
In context ↗ - NAC · Helped
I highly recommend using lots of NAC, once you start to feel relief from the probiotic, to combat the oxidative stressed that built up.
In context ↗ - Co Q 10 · Helped
Probiotics plus antioxidant supplements (NAC, PQQ, Co Q 10, Acetylcarnitine, alpja lipoic acid, zinc, magnesium) have me nearly recovered from CFS.
In context ↗ - Acetylcarnitine (ALCAR) · Helped
ALCAR should always be taken with omega 3s and biotin
In context ↗ - glutamine · Helped
Glutamine either in powder or pill form is excellent at expediting the repair process of gut tissue.
In context ↗ - alpha lipoic acid (ALA) · Helped
NAC, Zinc, ALA, ALCAR, PQQ
In context ↗ - Quercetin · Helped
Quecertin does seem to help me.
In context ↗ - Magnesium maltate · Helped
Magnesium maltate
In context ↗ - supplemental dietary fiber · Helped
I also found supplemental dietary fiber very helpful to keep things wet and moving.
In context ↗ - thigh high compression stockings and fluids (Liquid IV, Gatorade, pedialyte) · Helped
Thigh high compression stockings and always staying hydrated are the treatments.
In context ↗ - tonsillectomy · Helped
Still, way better than living with tonsils that were always infected and basically choking me to death slowly.
In context ↗ - Cannabis (THC, marijuana) · Not said
Pot helped me gain weight for a while and then all at once started making me crazy anxious.
In context ↗ - Antibiotics (unspecified) · Worse
Every time I am on antibiotics, it comes back.
In context ↗
Approaches: Amino acids and carnitine · Sex hormones · Supplements
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 | After |
|---|---|---|
| 8.5 years ago | CFS began after a mono-like infectionThis all started 8.5 years ago.In context ↗ | |
| about 2 years into the illness | symptoms became very intense, with heavy brain fog and depressionIt was about 2 years into what I now know is CFS that symptoms became very intense.In context ↗ | |
| 2015 | zinc changed things for a whileI've search high and low to figure out how and why zinc improved things for me for so long.In context ↗ | |
| 2016-06-23 | crashed on 1.5 mg LDN with severe depression and stopped itI just stopped taking 1.5 mg LDN. It made me feel like I was hit my a truck. Severe depression.In context ↗ | Low-dose naltrexone |
| 2017-01-10 | nearly recovered on probiotics plus an antioxidant cocktailProbiotics plus antioxidant supplements (NAC, PQQ, Co Q 10, Acetylcarnitine, alpja lipoic acid, zinc, magnesium) have me nearly recovered from CFS.In context ↗ | Probiotics and fermented foods |
| 2021-11-23 | still needs daily methylfolate to feel closer to normalI have to take 7.5 mg methylfolate every day, 15 years after infection, to feel closer to normal?In context ↗ | Methylfolate (L-methylfolate, 5-MTHF) |
Adverse events
- CBT and psychotherapy“I found CBT to be counter productive and harmful. ... Ultimately it was only invalidating.” In context ↗ Mood or psychiatric effects
- Cannabis (THC, marijuana)“Pot helped me gain weight for a while and then all at once started making me crazy anxious.” In context ↗ Mood or psychiatric effects
- Antidepressants (unspecified)“Antidepressants only make me feel worse” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“Extended release is a disaster.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I just stopped taking 1.5 mg LDN. It made me feel like I was hit my a truck. Severe depression.” In context ↗ Mood or psychiatric effects
- Methylfolate (L-methylfolate, 5-MTHF)“Then I over methylated because Deplin is way too high to be taking.” In context ↗ Mood or psychiatric effects
- Antibiotics (unspecified)“Every time I am on antibiotics, it comes back.” In context ↗ Made symptoms worse
- Sinus, jaw and tonsil surgery“I had to go back under to get cauterized. They didn't tell me the risks and I nearly died” In context ↗ ER visit
Symptoms mentioned
Their words about their symptoms
- Brain fog
one thing that still seems off with my cognition is perception of time
In context ↗ - Anxiety & low mood
Depression was the most obvious symptom.
In context ↗ - Temperature regulation
Being too hot is borderline trauma.
In context ↗ - POTS & dysautonomia
My doctor just insisted I wear thigh high stockings and gave me new options for beta blockers.
In context ↗
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