ME/CFS
Severe → near normalIll 6 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS four and a half years, now nearly back to normal after amitriptyline
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- May 2024
In their words
- Condition: ME/CFS
I’ve had MECFS since 2016
In context ↗ - At worst: Severe
I was mostly bedbound for 4-1/2 years.
In context ↗ - Now: Near normal
I’ve been in remission since November 2022. ... I def still need some coffee to clear out the cobwebs!
- Began after: another virus
About the end of September (so, 6 months ago) I had a terrible virus, which I caught from the toddler.
In context ↗
Read from 130 of their posts and comments; links to the 46 this page draws on
- Jun 2022
- Apr 2023
- Mar 2017
- Jan 2018
- Jan 2018
- Jun 2018
- May 2018
- Jun 2018
- Jun 2018
- Jun 2018
- Jun 2018
- Jul 2018
- Oct 2018
- Nov 2018
- Dec 2018
- Nov 2018
- Jun 2019
- Apr 2019
- Apr 2020
- Apr 2020
- May 2019
- Jan 2021
- Oct 2021
- Aug 2020
- Mar 2022
- Sep 2022
- Apr 2023
- May 2019
- Jun 2019
- Jul 2020
- Jul 2020
- Apr 2021
- Mar 2021
- Apr 2021
- Apr 2021
- Apr 2021
- Apr 2023
- Apr 2023
- Jun 2018
- Jun 2018
- May 2024
- Apr 2023
- Apr 2021
- Jun 2018
- Oct 2018
- Nov 2018
Summary
She fell ill in September 2016 after a virus and, after running six weeks in, was bedbound for around four and a half years. Antivirals made her feel crappy and diets gave limited gains; low-dose naltrexone helped her brain fog. In 2022 a doctor treated her headache as chronic migraine, and once amitriptyline reached 60 mg she went into remission, back to running, yoga and snowboarding. She spent close to 30k on doctors and tests.
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What they tried
Also tried
Gabapentin· Helped a lotProgesterone· Helped a lotantibiotics· HelpedPaxil· Helpedanti-parasite protocol· HelpedPaleo diet (no coffee, no alcohol, dairy-free)· HelpedPaleo diet (no coffee, no alcohol, dairy-free)· HelpedPaleo diet (no coffee, no alcohol, dairy-free)· Helpedweighted blanket· Helpedmedical marijuana / CBD· Helpedmelatonin (Olly Sleep gummies)· Helpedeating every three hours· Helpedshot of something like strong ibuprofen· HelpedNuun tablets· Helpedmeditation (10% Happier app)· Helpedrest (6 weeks in bed)· Helpedherbal antiviral protocol· Helped · wore offAtivan· Helpedfunctional medicine (CCFM)· Helped · wore offMagnesium· HelpedMeyers Cocktail IV· HelpedDr Chedda· No changeQuercetin· Worsebirth control / Mirena· WorseValtrex· Worseglutathione· Much worsealcohol (beer)· Not saidViragraphis· Not saidTransfer Factor Multi Immune· Not saidIMN-V drops· Not saidacupuncture· Not saidPranic healing· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- antibiotics · Helped
They finally treated me with antibiotics, which seemed to clear up the grossness happening in my sinuses.
In context ↗ - Gabapentin · Helped a lot
Gabapentin has really helped.
In context ↗ - Paxil · Helped
Paxil for life! I wish I had started it like 20 years ago
In context ↗ - Quercetin · Worse
I feel like I tried it before and didn't do well, but then I started questioning myself...
In context ↗ - anti-parasite protocol · Helped
I've been following the anti-parasite protocol, paleo + no coffee or alcohol, for about 4 months, and I'm slowly starting to feel noticeably better!
In context ↗ - weighted blanket · Helped
Got a weighted blanket for the jimmy legs. It’s AMAZE
In context ↗ - medical marijuana / CBD · Helped
I get the high CBD with a little THC.
In context ↗ - melatonin (Olly Sleep gummies) · Helped
If melatonin isn’t working, try a lower dose. It’s changed the game for me.
In context ↗ - eating every three hours · Helped
It has made a WORLD of difference for me.
In context ↗ - alcohol (beer) · Not said
But a couple of beers seems to make me function much better the next day.
In context ↗ - shot of something like strong ibuprofen · Helped
My doctor gave me a shot of something in my bum yesterday, and it helped immensely.
In context ↗ - Nuun tablets · Helped
Nuun tablets are great!
In context ↗ - meditation (10% Happier app) · Helped
I’ve started meditating with the 10% Happier app
In context ↗ - rest (6 weeks in bed) · Helped
I basically got in bed for 6 weeks, and am slowly climbing out of the hole.
In context ↗ - herbal antiviral protocol · Helped
She started me on an antiviral protocol (herbal) and supplements to fill in gaps found in my bloodwork.
In context ↗ - Ativan · Helped
the Ativan does help me tremendously when I take it. But it’s such a tiny amount.
In context ↗ - birth control / Mirena · Worse
I had the Mirena finally pulled last year because any type of BC kills my libido!
In context ↗ - functional medicine (CCFM) · Helped
I’m still better than when I started seeing her.
In context ↗ - Dr Chedda · No change
I just didn’t get very much out of it, and it was incredibly expensive.
In context ↗ - LDN · Helped a lot
LDN has helped me immensely with my brain fog, memory loss, aphasia
In context ↗ - Viragraphis · Not said
Viragraphis, Transfer Factor Multi Immune, IMN-V drops. Starting slowly!
In context ↗ - Valtrex · Worse
Been on Valtrex for a month now, just got up to 3000mg a day.
In context ↗ - Progesterone · Helped a lot
My Dr wrote me script for Progesterone. It has legitimately saved me.
In context ↗ - Magnesium · Helped
Magnesium and LDN have helped a lot.
In context ↗ - Meyers Cocktail IV · Helped
the first was the Meyers Cocktail, which seemed to help!
In context ↗ - glutathione · Much worse
And then I felt terrible for 2 months.
In context ↗ - Amatriptyline · Helped a lot
he prescribed me Amatriptyline which I had to titrate up very slowly, but at 60 mg something really shifted
In context ↗ - Butterburr · Helped
has me on Amatryptaline & Butterburr. It has raised my baseline a lot, and my headaches are soooo much better.
In context ↗ - acupuncture · Not said
acupuncture, Pranic healing, you name it, I tried it.
In context ↗ - COVID vaccination as treatment · Not said
I just had a sore arm for 2 days.
In context ↗
Approaches: Supplements · Tricyclic antidepressants
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| September 2016 | viral illness caught from her toddlerAbout the end of September (so, 6 months ago) I had a terrible virus, which I caught from the toddler.In context ↗ | Mild | |
| late 2016 | became bedbound after pushing through the illnessI worked myself into the ground, and was bedbound for 4.5 yearsIn context ↗ | Severe | |
| June 2018 | anti-parasite protocol, paleo diet and supplements raised her baselineI am slowly starting to raise my baseline. ... I still crash when I go wild, but my crashed state is not as intense as it used to be.In context ↗ | Mild | Antiparasitics |
| late May 2018 | crashed after overdoing it, down to about 40-50%Did a stupid thing 3 weeks ago...and here I am at about 40-50%.In context ↗ | Moderate | |
| November 2018 | six weeks in bed after a downward spiralI basically got in bed for 6 weeks, and am slowly climbing out of the hole.In context ↗ | Moderate | Radical rest |
| July 2020 | low-dose naltrexone eased headaches and brain fogIt’s not a panacea, but it helped with my headaches and brain fog. Not gone, but much better.In context ↗ | Severe | Low-dose naltrexone |
| May 2022 | first COVID infection; rough two weeksI had a rough 2 weeks, but am back to baseline!In context ↗ | Severe | |
| September 2022 | amitriptyline and butterbur for chronic migraine raised her baselineIt has raised my baseline a lot, and my headaches are soooo much better. I am definitely NOT cured, but my quality of life is much improved.In context ↗ | Moderate | |
| Halloween 2022 | no crashes once amitriptyline reached 60 mg; went snowboarding againat 60 mg something really shifted and I haven’t crashed sinceIn context ↗ | Near normal | |
| May 2024 | still in remission, back to running and yogaI’ve been in remission since November 2022.In context ↗ | Near normal |
Adverse events
- Baicalein and quercetin“I feel like I tried it before and didn't do well, but then I started questioning myself...” In context ↗ Made symptoms worse
- Low-dose naltrexone“These or the LDN are giving me GI issues, but they seem to be tapering off.” In context ↗ Gut side effects
- Low-dose naltrexone“Feeling nauseous, which seems to be getting a bit better, but my energy has been LOW. muscles always feel like they’ve maxed out.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I’m at 1.5 mg, felt wretched for 3 weeks, but started feeling better, then tried to up to 3mg....😵.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I should have started lower! But, I’m very sensitive to drugs. I had terrible side effects, but stuck it out.” In context ↗ Side effects
- Low-dose naltrexone“Tried 4mg for a few weeks and realized I was feeling worse, so back to 3.5.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I couldn’t sleep on it for the first couple years, so I took it in the morning.” In context ↗ Insomnia from treatment
- IUD (hormonal or copper)“Unfortunately my body hates BC. I had the Mirena finally pulled last year because any type of BC kills my libido!” In context ↗ Side effects
- COVID vaccination as treatment“I just had a sore arm for 2 days.” In context ↗ Side effects
- Valtrex / valacyclovir“They made me feel so crappy that I stopped taking them.” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“I was nauseous the whole time I was on them.” In context ↗ Gut side effects
- Valtrex / valacyclovir“Oh god, the THIRST! Terrible.” In context ↗ Other
- Glutathione“But the FM doc wanted to try a Vit C bag with Glutathione. And then I felt terrible for 2 months.” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“It took me a snout 6-7 months to get there because it made me sooo sleepy in the mornings!” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I still crash when I go wild, but my crashed state is not as intense as it used to be.
In context ↗ - Brain fog
I needed 2 cups of coffee to clear the fog before the Amatriptyline, and I still do!
In context ↗ - Headaches & migraine
I have had a headache since I got sick 5 years ago, my muscles all hurt
In context ↗ - Pain & fibromyalgia
basically everything hurts.
In context ↗ - Light & noise sensitivity
I’m sensitive to light and sound
In context ↗ - Sleep problems
I’m not the best sleeper, so it helps me with that too!
In context ↗ - Muscle weakness
my energy has been LOW. muscles always feel like they’ve maxed out.
In context ↗ - Neuropathy & tingling
I have fire like nerve pain throughout my body.
In context ↗ - Anxiety & low mood
I’ve had anxiety forever.
In context ↗ - POTS & dysautonomia
light/noise sensitivity, OI, and the list goes on.
In context ↗ - Flu-like symptoms
Flu like symptoms for 3 days.
In context ↗ - Temperature regulation
My Dr wrote me script for Progesterone. It has legitimately saved me. I still get them, but they are tiny!
In context ↗
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