ME/CFS
Severe → near normalIll 12 years before improving or writingNeeds ongoing treatment
CFS kept them in bed, now near normal with Wellbutrin and supplements
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 12 years
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
Hi I have CFS (no LC but still follow this sub bc of the similarities).
In context ↗ - At worst: Severe
If I don’t take anything I’d be bed bound.
In context ↗ - Now: Near normal
But for the last week or two my energy is back up and I've been grinding away at the gym. ... There is 10% that can be better, but with a 50% improvement i cannot complain.
In context ↗
Read from 32 of their posts and comments; links to the 20 this page draws on
Summary
A US user with CFS of about 12 years said that without medication they could not get out of bed, and worked from bed needing daily rest. High-dose Wellbutrin lifted physical energy to about 90% of normal at first, later 60%; a large supplement stack added gains, though a February 2024 dip set them back, and Vraylar later added gains. Naps and daily flu-like feelings remained.
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What they tried
What they credit
Also tried
NAD+ / Liposomal NAD+· HelpedAncestral supplements (Fish, Beef Organs)· HelpedLexapro (escitalopram)· HelpedQualia Mind / Resilience· HelpedTylenol· HelpedAdvil· HelpedB1 / Super B-1 Complex· No changeIron Bisglycinate· WorsePercocet· WorseMultivitamin· WorseC8 MCT Oil· WorseCertain stimulants· WorseLSD· Much worseLamictal (lamotrigine)· Not saidLithium Orotate· Not saidLiposomal Glutathione· Not saidSuper B Complex· Not saidFish Oil· Not saidEnzyme Complex· Not saidPre, Pro, Post/biotics· Not saidUTI treatment· Not saidMagnesium· Not saidPotassium iodide· Not saidPotassium iodide· Not saidMiralax· Not saidPrimatene Mist Inhaler· Not said
Their words about each treatment
- NAD+ / Liposomal NAD+ · Helped
Yeah I'm already feeling it lol, feeling funny sensations in my body and very energetic.
In context ↗ - Ancestral supplements (Fish, Beef Organs) · Helped
I took 2 each of the Fish, and the Beef Organs and feel really good rn.
In context ↗ - LSD · Much worse
but no one should fuck with lsd IME, fucked me up 1000x more.
In context ↗ - Wellbutrin (bupropion) · Helped a lot
Wellbutrin is the only thing that helps, BUT there are tradeoffs.
In context ↗ - Lamictal (lamotrigine) · Not said
High amounts of Lamictal or Lexapro + Lithium Orotate to offset side effects of anxiety
In context ↗ - Lexapro (escitalopram) · Helped
Lexapro helps with stress/anxiety but worsens fatigue
In context ↗ - Lithium Orotate · Not said
Lithium Orotate to smoothen and stabilize the mood
In context ↗ - B1 / Super B-1 Complex · No change
I tried B1 and am still taking it - it doesn’t really help.
In context ↗ - Iron Bisglycinate · Worse
1. Iron Bisglycinate ... that stuff screws my gut too much so I can’t take it
In context ↗ - Qualia Mind / Resilience · Helped
I remember Mind helped me a while ago. Then I bought Resilience which was absolutely useless.
In context ↗ - Percocet · Worse
they made me feel couch locked.
In context ↗ - Liposomal Glutathione · Not said
5. Liposomal Glutathione (1000-1500mg) (Antioxidant)
In context ↗ - Super B Complex · Not said
7. Super B Complex (CFS, Energy)
In context ↗ - Fish Oil · Not said
8. Fish Oil (Antioxidant)
In context ↗ - Enzyme Complex · Not said
9. Enzyme Complex (Digestion, IBS)
In context ↗ - Tylenol · Helped
11. Tylenol (Muscle Aches)
In context ↗ - Advil · Helped
I need to take several advil and tylenol to feel some relief
In context ↗ - Pre, Pro, Post/biotics · Not said
13. Pre, Pro, Post/biotics (Digestion, IBS)
In context ↗ - UTI treatment · Not said
14. UTI treatment (rarely, as needed)
In context ↗ - Magnesium · Not said
15. Magnesium (stopped)
In context ↗ - Potassium iodide · Not said
16. Potassium iodide (stopped)
In context ↗ - Miralax · Not said
17. Miralax (Rarely or as needed for Digestion, IBS)
In context ↗ - Primatene Mist Inhaler · Not said
18. Primatene Mist Inhaler (1 spray every 1-2 weeks or as needed
In context ↗ - Multivitamin · Worse
the caffeine or something else in it caused nausea and vomiting on the second day. I switched to Alive.
In context ↗ - C8 MCT Oil · Worse
2. C8 MCT Oil ... that stuff screws my gut too much so I can’t take it
In context ↗ - Certain stimulants · Worse
3. Certain stimulants ... that stuff screws my gut too much so I can’t take it
In context ↗ - Vraylar (cariprazine) · Helped a lot
vraylar brings me up another 50% i would say
In context ↗
Approaches: CBT & mindset · Antipsychotics · Other antidepressants · Other drugs and medicines
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 |
|---|---|
| 2012 | CFS onset; unmedicated, bed- or couch-boundif I’m unmedicated it’s the can’t get out of bed or off the couch type, the oversleep in the morning typeIn context ↗ |
| 2023-11 | high-dose Wellbutrin gave relief, later fadedI get relief at 600mgIn context ↗ |
| 2024-02-24 | large supplement and medication stack helpedwhich on aggregate helps me get out of bed, have energy to sit down, work and move around a little bitIn context ↗ |
| 2024-02-27 | dip after feeling better; back to square oneFeel like my energy envelope is back to square one.In context ↗ |
| 2024-06-02 | energy back up, going to the gymfor the last week or two my energy is back up and I've been grinding away at the gymIn context ↗ |
| 2024-07-15 | Spravato, Wellbutrin, Buspar and therapy helpingSpravato Wellbutrin Buspar TherapyIn context ↗ |
Adverse events
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“Yeah I'm already feeling it lol, feeling funny sensations in my body and very energetic.” In context ↗ Side effects
- Bupropion (Wellbutrin)“When I would take 600mg my GAD would become much worse” In context ↗ Mood or psychiatric effects
- Bupropion (Wellbutrin)“it was a slippery slope going up to 600xl then I’d have to go up on my other med - and it made me feel more sick” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“I have taken lexapro and CFS worsened” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“It would cause me constipation at doses higher than 300mg which is what I’m on currently.” In context ↗ Gut side effects
- Oxycodone / paracetamol (Percocet)“A lot of ppl are validating that that is normal which is strange because they made me feel couch locked.” In context ↗ Side effects
- Multivitamins (Centrum)“the caffeine or something else in it caused nausea and vomiting on the second day” In context ↗ Gut side effects
- Iron infusion / ferritin repletion“I have IBS already and that stuff screws my gut too much so I can’t take it” In context ↗ Gut side effects
- Iron infusion / ferritin repletion, MCT oil, Stimulants (unspecified)“I have IBS already and that stuff screws my gut too much so I can’t take it” In context ↗ Gut side effects
- Stimulants (unspecified)“I have IBS already and that stuff screws my gut too much so I can’t take it” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsPain & fibromyalgiaSleep problems
Their words about their symptoms
- Sleep problems
don't feel well rested or fully awake
In context ↗ - Flu-like symptoms
I have felt like I always have some sort of flu
In context ↗ - Brain fog
my brain and body feel like I'm a walking zombie
In context ↗ - Gut problems
I have IBS already and that stuff screws my gut too much
In context ↗ - Pain & fibromyalgia
Tylenol (Muscle Aches)
In context ↗ - Anxiety & low mood
Wellbutrin (300mg) (CFS, Physical energy, depression)
In context ↗ - Breathlessness
opening up the lungs and airways to improve breathing and oxygen blood flow
In context ↗
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