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ME/CFS Moderate → no benefit

ME/CFS: LDN, Abilify and cannabis tried, no improvement

Condition
ME/CFS
At worst
Moderate (mostly housebound)
Ill for
Not stated
Last post
Aug 2025
In their words
Read from 7 of their posts and comments; links to the 6 this page draws on

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Summary

A Reddit user with ME/CFS tried low-dose naltrexone, building slowly to 4.5 mg without being sure it helped, then stopped. Low-dose Abilify, started at 0.1 mg and built to 0.3 mg while still increasing, hadn't made a noticeable difference yet. Medicinal cannabis at a very low dose worsened their muscle tension and pain, while THC-free CBD oil did nothing for them. They also reported that treating B12, iron and thyroid deficiencies worsened the deficiency symptoms.

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What they tried

Also tried

CBD topical roll on· HelpedLow Dose Abilify· No changebroad spectrum CBD oil (no THC)· No changeB12 Methylcobalamin· Worseiron bisglycinate· WorseThyroid medication· Worseintravenous fluids· Worsemedicinal cannabis oil (20:12 CBD:THC)· WorseLow Dose Naltrexone (LDN)· Not said
Their words about each treatment
  • Low Dose Naltrexone (LDN) · Not saidI wasn’t sure it was making any difference and I recently stopped taking it. In context ↗
  • B12 Methylcobalamin · WorseThe longer I take it the worse every single symptom of B12 deficiency gets until the point where I have excruciating electric shock nerve pains. In context ↗
  • iron bisglycinate · Worsethe longer I take it the worse every symptom of deficiency gets plus one symptom of excess iron - extreme pain in my joints in my hands In context ↗
  • Thyroid medication · WorseEvery symptom of hypothyroidism is worsened when I take Thyroid medication and lessened when I stop, and yet the blood levels show improvement when taking. In context ↗
  • intravenous fluids · Worsewhen I was put on intravenous fluids for dehydration I constantly was needing to go to the toilet during treatment and became so ravenously thirsty I could chug bottles full of water during IV, which would obviously be counterproductive In context ↗
  • Low Dose Abilify · No changeI haven’t noticed any difference yet but I will continue to increase by 0.1mg over a period of time. In context ↗
  • medicinal cannabis oil (20:12 CBD:THC) · WorseEven at this dose my muscles tense up and I get more pain and the longer I take it the worse it gets. In context ↗
  • broad spectrum CBD oil (no THC) · No changeI have previous tried broad spectrum CBD oil (no thc) but this didn’t do anything for me. In context ↗
  • CBD topical roll on · HelpedI have been prescribed a CBD topical roll on and it is very mildly helpful for headaches only In context ↗

Their path

They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.

WhenWhat happened
—ME/CFS, onset date not givenI have ME/CFS and suspect that this probably has a role to play in these issue In context ↗
2023-02-28treating B12, iron and thyroid deficiencies worsened deficiency symptomseach and every symptom and sign of deficiency is measurably worsened the more I treat the deficiency In context ↗
2025-08-16still seeking pain relief; nothing has workedNothing works for me and the medicinal cannabis was a last desperate hope for some relief. In context ↗

Adverse events

  • Vitamin B12“the longer I take it the worse every single symptom of B12 deficiency gets until the point where I have excruciating electric shock nerve pains.” In context ↗ Made symptoms worse
  • Iron infusion / ferritin repletion“the longer I take it the worse every symptom of deficiency gets plus one symptom of excess iron - extreme pain in my joints in my hands.” In context ↗ Made symptoms worse
  • Thyroid hormones (unspecified)“Every symptom of hypothyroidism is worsened when I take Thyroid medication and lessened when I stop” In context ↗ Made symptoms worse
  • IV saline and fluids“when I was put on intravenous fluids for dehydration I constantly was needing to go to the toilet during treatment and became so ravenously thirsty I could chug bottles full of water during IV” In context ↗ Side effects
  • “Even at this dose my muscles tense up and I get more pain and the longer I take it the worse it gets. ... other times it feels like my brain is on fire” In context ↗ Made symptoms worse

Symptoms mentioned

Their words about their symptoms
  • Pain & fibromyalgiaMy pain tends to be worst in my neck and head normally and this is made worse. In context ↗
  • Headaches & migraineit is very mildly helpful for headaches only In context ↗
  • Neuropathy & tinglingI have excruciating electric shock nerve pains In context ↗

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