ME/CFS
Severe → much betterIll 5 years before improving or writingNeeds ongoing treatment
Bedridden much of the day with ME/CFS, now much better after L-tryptophan and 5-HTP
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Jan 2018
In their words
- Condition: ME/CFS
my 'adventure' with CFS/Fibro started around 2009
In context ↗ - At worst: Severe
bedridden for most of the day every day, sleeping 14 hours a day, unable to work, barely able to study
In context ↗ - Now: Much better
Im not 'healed' but I have worked enough to buy a house, finish university with a sterling gpa and hold down an adventurous girlfriend in between
In context ↗ - Began after: nothing they could name
my 'adventure' with CFS/Fibro started around 2009 and life has been pretty sub par from then on
Read from 33 of their posts and comments; links to the 20 this page draws on
Summary
Became ill around 2009 and got really sick in his final year of school with constant headache, pain, brain fog and unrefreshing sleep, and by 2013 was bedridden much of the day, unable to work or study. From late 2013 L-tryptophan then high-dose 5-HTP (later slow-release) with zinc and magnesium lifted him to part-time work and full-time study; later full-time work also involved dexamphetamine. He was not healed and needed periodic high-dose repeats.
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What they tried
What they credit
Also tried
illicit substances (MDMA, 2C-I, shrooms)· Helped a lotB12 injections· Helped · wore offhigh UV protection, polarized sunglasses· Helpedvitamin C and salt purge· Helpeddiet· No changerest routines / spoon game· No changewisdom teeth removal· No changemodafinil· No changeL-Dopa· No changeCodine (codeine) painkillers· Worseexercise· WorseEndep· WorseZoloft· WorseCircadin· WorseSAM-e· Worsevaldoxan· Much worse
Their words about each treatment
- Codine (codeine) painkillers · Worse
i was prescribed painkillers of which they continued to up the dosage of until they turned me into a vegetable
In context ↗ - diet · No change
i have tried every medicine they prescribed me, diet, exercise, sup pils, rest routines-- but to essentially no avail
In context ↗ - exercise · Worse
i havent gone back to intensive prolonged exercise yet as i have found that will fuck me during, immediately after, and days after
In context ↗ - Endep · Worse
endep also wrecked cognitive function, made me sleepy and dopey 24/7
In context ↗ - B12 injections · Helped
first 2 weeks noticed an improvement. bigger improvement than any other treatment actually
In context ↗ - wisdom teeth removal · No change
i had 2 of mine out 2 months ago because of such an infection ... but in follow up to mine i havent seen a change sadly
In context ↗ - high UV protection, polarized sunglasses · Helped
i have found that it has improved my headaches, concentration, and energy levels (often not by much, but something)
In context ↗ - L-tryptophan · Helped
i started on L-tryptophan before 5-HTP and it took me weeks to see slight improvement
In context ↗ - 5-HTP · Helped a lot
these pills keep me healthy enough to tackle a uni degree (current GPA ~6.2) work 20 hours a week and hang out with friends regularly
In context ↗ - zinc citrate and magnesium · Helped
i can tell when i havent had these two by the effectiveness of the 5-HTP
In context ↗ - Zoloft · Worse
zoloft made me dopey, unable to handle emotions, suuuuper drowsy all the time
In context ↗ - Circadin · Worse
circadian gave me debilitating migraines and reduced my cognitive function to zero (couldnt even have a conversation)
In context ↗ - valdoxan · Much worse
valdoxin.... well that made me crazy, mood swings, sudden anger/scared/sad spikes
In context ↗ - SAM-e · Worse
SAMe gave me constant headaches and didnt help my sleep like 5HTP did
In context ↗ - modafinil · No change
was no good at all for me. just made me feel like the lights were on but no one was home.
In context ↗ - amphetamines / Dexamphetamine · Helped a lot
after a harsh long binge on the stuff and eventual 5HTP & Dexamphetamine treatment im full time uni and full time work
In context ↗ - illicit substances (MDMA, 2C-I, shrooms) · Helped a lot
me for instance, bedridden for most of the day every day ... to working and studying full time simultaneously
In context ↗ - probiotics · Helped
ive found it helps. there is good research for it too.
In context ↗ - vitamin C and salt purge · Helped
when im really bad i do a vitaminC and salt purge for a few days like they do for lyme disease. ive found i get great results with this
In context ↗ - L-Dopa · No change
went and bulked up hard on L-Dopa in hopes of getting a good result. however, i didnt get anything to write home about
In context ↗ - EGCG · Helped
I felt like this, amongst everything else i was supplementing with, was what took me from bedridden to simultaneously working hospitality part-time and studying full-time
In context ↗
Approaches: Amino acids and carnitine · Stimulants · 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 |
|---|---|
| 2009 | became ill in final year of school, pushed through examsi only got really sick in my final year of school which brought up a lot of stress and i had to push through the yearIn context ↗ |
| February 2011 | moved to Switzerland for a year and felt slightly betteri felt marginally better over thereIn context ↗ |
| 2012 | crashed after returning home and restarting universityupon coming back i am just crashing and burningIn context ↗ |
| 2013 | bedridden most of the day, unable to work or studybedridden for most of the day every day, sleeping 14 hours a day, unable to work, barely able to studyIn context ↗ |
| March 2014 | back to university and part-time hospitality work on 5-HTPthese pills keep me healthy enough to tackle a uni degree (current GPA ~6.2) work 20 hours a week and hang out with friends regularlyIn context ↗ |
| May 2015 | full-time university and full-time workim full time uni and full time workIn context ↗ |
| 2018-01-10 | high functioning, still needs periodic high-dose resets5 Htp was the savior that sent me from being bedridden to high functioning againIn context ↗ |
Adverse events
- “one of my doctors actually prescribed me Codine for my headaches, so much infact it would turn me into a vegetable!” In context ↗ Side effects
- Sertraline (Zoloft)“zoloft made me dopey, unable to handle emotions, suuuuper drowsy all the time” In context ↗ Side effects
- “circadian gave me debilitating migraines and reduced my cognitive function to zero” In context ↗ Side effects
- Amitriptyline (Elavil)“endep also wrecked cognitive function, made me sleepy and dopey 24/7” In context ↗ Side effects
- Agomelatine (Valdoxan)“valdoxin.... well that made me crazy, mood swings, sudden anger/scared/sad spikes, pushed me to the point where i couldnt stomach food or water” In context ↗ Mood or psychiatric effects
- SAMe (S-adenosylmethionine)“SAMe gave me constant headaches and didnt help my sleep like 5HTP did” In context ↗ Side effects
- 5-HTP“the only even somewhat common one is minor digestive track things, which i have experienced twice before” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Headaches & migraine
Consistent headache of over 2 years (just one headache 24/7)
In context ↗ - Pain & fibromyalgia
general body and muscle ache
In context ↗ - Brain fog
zero concentration
In context ↗ - Sleep problems
narcoleptic by day insomniac by night, go figure right
In context ↗ - POTS & dysautonomia
randomly passing out (not long, mere seconds)
In context ↗ - Post-exertional malaise
that will fuck me during, immediately after, and days after
In context ↗ - Gut problems
occasional nausea and stomach pains
In context ↗ - Flu-like symptoms
lymph nodes swelling from time to time (and hurting)
In context ↗ - Anxiety & low mood
recently it has started to get to me
In context ↗ - Hair loss
getting mad hair loss that has really developed in the last 18 months
In context ↗ - Heart symptoms & palpitations
sharp chest and kidney pains
In context ↗
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