ME/CFS
Outcome unclearNeeds ongoing treatment
ME/CFS too tired for stairs and unable to sit up, tried supplements and antivirals
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Mar 2019
Summary
Petrel 97330 became ill with ME/CFS and became more severe over time. By late 2018 they were too tired to manage stairs and could not sleep through family noise. They tried supplements, thyroid hormone, saline infusions and antivirals. By March 2019 they could not sit up and described a persistent dark feeling that was not impulsive.
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What they tried
Also tried
Mixed tocopherols· HelpedHigh dose thiamine· HelpedBCAAs· Helped · wore offL-Tyrosine· Helped · wore offchaga· Helped · wore offthyroid· Helpedsaline· Helped · wore offgabapentin· Helped · wore offcyproheptadine· Helpedoral vitamin D· No changevitamin K· No changeritalin· Worsemedical weed· Worsephenibut· WorseAmbien· Worsesnris, ssris· Worseaspirin· Not saidglycine· Not saidgelatin· Not saidvaltrex· Not saidmany kinds of antibiotics· Not saidethyl pyruvate· Not saidcarbogen· Not saidherbs, supplements, vitamins and medicinal mushrooms· Not saidkratom· Not saidantihistamines· Not saidcervical traction/PT· Not saidred light therapy· Not saidexercising (early in illness)· Not saidpacing· Not saidlow dose naltrexone· Not saidketamine· Not saiddifferent diets· Not said
Their words about each treatment
- oral vitamin D · No change
i've never really felt benefits from oral vitamin D supplementation
In context ↗ - vitamin K · No change
I take vitamin K although I don't notice it doing anything
In context ↗ - aspirin · Not said
mainly because I often take aspirin and vitamin K can prevent blood thinning
In context ↗ - Mixed tocopherols · Helped
Mixed tocopherols has helped me much more than normal vitamin E.
In context ↗ - High dose thiamine · Helped
High dose thiamine has occasionally helped.
In context ↗ - BCAAs · Helped
High dose BCAAs combined with tyrosine definitely helps but the effect is short-lived
In context ↗ - L-Tyrosine · Helped
the only supplement combo that really helped was BCAAs plus L-Tyrosine
In context ↗ - chaga · Helped
high quality chaga, made very strong, has helped ... but it's very short-lived
In context ↗ - glycine · Not said
I try and take glycine and gelatin when I remember cause it's generally good.
In context ↗ - ritalin · Worse
I became more sensitive to the negative adrenergic effects I think ... leave me shivering and shaking like I was having a meth overdose
In context ↗ - thyroid · Helped
thyroid has caused some side effects but without it i would be in a lot more agony for sure
In context ↗ - saline · Helped
saline (which actually helped for awhile until I became more severe)
In context ↗ - valtrex · Not said
Ive tried valtrex
In context ↗ - many kinds of antibiotics · Not said
many kinds of antibiotics
In context ↗ - ethyl pyruvate · Not said
virtually everything that could affect metabolism and pyruvate dehydrogenase (high dose thiamine, ethyl pyruvate, thyroid hormone)
In context ↗ - herbs, supplements, vitamins and medicinal mushrooms · Not said
basically every herb and supplement and vitamin and medicinal mushroom there is
In context ↗ - gabapentin · Helped
gabapentin used to
In context ↗ - medical weed · Worse
medical weed (I hate it)
In context ↗ - antihistamines · Not said
antihistamines for mcas stuff and sleep
In context ↗ - phenibut · Worse
phenibut but that causes other problems
In context ↗ - Ambien · Worse
I tolerated it fine before I got sick, but after I got sick it felt like poison--weird hangovers and whatnot
In context ↗ - cervical traction/PT · Not said
cervical traction/PT
In context ↗ - red light therapy · Not said
red light therapy
In context ↗ - exercising (early in illness) · Not said
exercising (early in illness)
In context ↗ - low dose naltrexone · Not said
low dose naltrexone
In context ↗ - different diets · Not said
different diets
In context ↗ - snris, ssris · Worse
Very sensitive to everything and hate snris, ssris, stimulants now.
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.
| When | What happened | Where they were |
|---|---|---|
| 2018-10-09 | too tired to manage stairs, sleeping badlyas I am too tired to go up and down stairs without difficultyIn context ↗ | Severe |
| 2019-03-14 | fully bedridden, in pain, suicidalBut hate mobile gaming and can’t sit up to do Xbox or anything.In context ↗ | Very severe |
Adverse events
- Zolpidem (Ambien)“after I got sick it felt like poison--weird hangovers and whatnot” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“I would take a dose and it wouldn't even help me focus but would leave me shivering and shaking like I was having a meth overdose” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I just can't sleep through it
In context ↗ - Brain fog
I forget fast and almost feel like I have dementia
In context ↗ - POTS & dysautonomia
It helps my blood volume so that feeling you describe goes away
In context ↗ - Mast cell (MCAS) & allergies
antihistamines for mcas stuff and sleep
In context ↗