ME/CFS
Severe → much betterIll 2.5 years before improving or writingNeeds ongoing treatment
Close to bedbound with ME/CFS, now much better; cannabis helped pain
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Jul 2023
In their words
- Condition: ME/CFS
I got me/cfs from LC.
In context ↗ - At worst: Severe
I was bedbound for 4 months
In context ↗ - Now: Much better
I am now working 4 days a week ... I am still suffering but my me/cfs is mild.
In context ↗ - Began after: COVID
I got sick in March 2020
In context ↗ - Says they never had: Breathlessness
I have no breathing issues
Read from 332 of their posts and comments; links to the 79 this page draws on
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Summary
Lake 94240 fell ill in March 2020 and never recovered, developing dysautonomia, migraines and later being diagnosed with ME/CFS and fibromyalgia. By mid-2022 they were still declining and close to bedbound, with chronic pain, fatigue and temperature dysregulation; cannabis products helped their pain, while LDN was not tried and an elimination diet had just begun.
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What they tried
What they credit
promethazine· Helpedvitamin D3· Helpedmethylated B complex and B12· Helpedmethylated B complex and B12· Helpedelimination diet· HelpedLyrica (pregabalin)· HelpedCymbalta (duloxetine)· Helped · mainLDN· Helped · mainliposomal luteolin· Helpedashwagandha· Helpedginkgo biloba· Helpedliquid CoQ10 with vitamin C and E· Helpedmagnesium oil, cream and Epsom salt baths· Helpedmagnesium oil, cream and Epsom salt baths· Helped
Also tried
full spectrum CBD/CBG/CBN/CBC (with low THC)· Helped a lotBotox· Helped a lotamitriptaline· HelpedDr Schultz intestinal formula #1 & #2· Helpedacupuncture· HelpedTopamax (topiramate)· Helpedpropranolol· Helpedtinazadine / tizanidine· Helpedhydroxizine pamoate· HelpedAdvil· Helpedquercetin and natural H2 blockers· HelpedDAO· Helpedliquid multivitamin (Now)· Helpedcoconut oil mouthwash (Dr Ginger's)· Helpedmito defense· HelpedCPAP· Helpedpacing· Helpedmigraine glasses· HelpedLexapro· No changegabapentin· No changerizatriptan· No changetriptans and CGRP drugs (amivig, ubrelvy, Rayvow)· No changeZantac· No changeaspirin· No changelow histamine diet· No changefamotidine· No changenystatin· No changeCBT / ACT· No changemeditation / mindfulness· No changeBenadryl· Worseproton pump inhibitor· Worseprobiotics (incl. bifidobacteria) and fermented foods· Worseoral iron (Vitamin Code Raw Iron, raw iron)· WorseAdderall· Worseexercise / walking· Much worsemigraine cocktail (ER)· Much worsephysical therapy (PT)· Much worseZyrtec· Not saidd-mannose· Not saidantibiotic for a UTI· Not saidCannabis (THC, marijuana)· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- promethazine · Helped
My doctor took away my promethazine after 24 years of being on 25mg a day. The WORST decision made by doctors through my whole LH.
In context ↗ - Lexapro · No change
I was already on it when LHing but I did taper from 20 to 5 then back up to 20 during my LH with no problem.
In context ↗ - amitriptaline · Helped
I take 50 mg at bedtime .I took it way before ME.
In context ↗ - Dr Schultz intestinal formula #1 & #2 · Helped
Dr. Schultz has saved me. I have been using his products since I was in my 20s
In context ↗ - gabapentin · No change
I have a lot of gabapentin from when another doc had me on 9 a day. I titrated myself off.
In context ↗ - acupuncture · Helped
It decreases the sensory overload point for me. Keeps me in a calmer state so I am less likely to crash
In context ↗ - exercise / walking · Much worse
If you have dysautonomia or pem please just don't do it. I did it in April 2020.
In context ↗ - vitamin D3 · Helped
Only ones that helped were methylated b vitamins, d3
In context ↗ - Topamax (topiramate) · Helped
The only thing that has helped is botox, topamax, and propranolol.
In context ↗ - propranolol · Helped
propranolol is for anxiety states/migraines
In context ↗ - rizatriptan · No change
I now take topamax, propranolol, botox, rizatriptan.
In context ↗ - triptans and CGRP drugs (amivig, ubrelvy, Rayvow) · No change
I have been on all the triptans like 6, Rayvow, amivig, ubrelvy.
In context ↗ - tinazadine / tizanidine · Helped
I am on 2 gabapentin and 1 tinazidine a day.
In context ↗ - hydroxizine pamoate · Helped
They replaced it with hydroxizine pamoate 25 mg 2x a day. Not as effective.
In context ↗ - Benadryl · Worse
I had the same experience on benadryl. It was not right for me. Increasing anxiety I discontinued taking it but they started giving it to me in the ER for my intractable migraines.
In context ↗ - migraine cocktail (ER) · Much worse
I had the same meds migraine cocktail gave me a CRAZY panic attack for 12 hours
In context ↗ - proton pump inhibitor · Worse
I did stop my proton pump inhibitor because I thought it was making my migraines worse
In context ↗ - Zantac · No change
I was doing Zantac but it destroy the microbiome.
In context ↗ - Advil · Helped
Advil does help me if I have nothing else or to supplement.
In context ↗ - aspirin · No change
I have tried aspirin it has done nothing for me. I still take it though I guess secretly hoping.
In context ↗ - low histamine diet · No change
low histamine diet did not help
In context ↗ - full spectrum CBD/CBG/CBN/CBC (with low THC) · Helped a lot
This was a life saver for me.
In context ↗ - Botox · Helped a lot
Botox saved me.
In context ↗ - quercetin and natural H2 blockers · Helped
I started taking natural h2 histamine blockers quercetin, dao and turmeric and hemp. That's when I saw a change.
In context ↗ - DAO · Helped
for h2 histamine I'm choosing DAO
In context ↗ - famotidine · No change
I took h1, h2 receptor blockers saw 0 improvement
In context ↗ - Zyrtec · Not said
I just take Zyrtek when it happens now.
In context ↗ - nystatin · No change
the doctor even prescribed nystatin nothing
In context ↗ - liquid multivitamin (Now) · Helped
I cured it with Now liquid multivitamin, zinc spray, and coconut mouthwash.
In context ↗ - coconut oil mouthwash (Dr Ginger's) · Helped
I got rid of it with liquid multivitamin and coconut oil mouthwash.
In context ↗ - elimination diet · Helped
The one change I made that did help was cutting out dairy, sugar, and gluten the elimination diet was a game changer.
In context ↗ - probiotics (incl. bifidobacteria) and fermented foods · Worse
I have a refrigerated probiotic but it contains more acidophilus I think it makes me worse.
In context ↗ - oral iron (Vitamin Code Raw Iron, raw iron) · Worse
This particular supplement made my gastrointestinal system worse than its ever been.
In context ↗ - d-mannose · Not said
I take dmannos and try to take other supplements to boost my immune system.
In context ↗ - antibiotic for a UTI · Not said
I came back positive for UTI in urgent clinic they gave me antibiotic.
In context ↗ - physical therapy (PT) · Much worse
The last 2 times I tried PT it was a DISASTER.
In context ↗ - Lyrica (pregabalin) · Helped
I improved on Cymbalta. I am at 38 months and went from bedbound to working a few days a week when my neurologist changed my meds and put me on lyrica and Cymbalta
In context ↗ - Cymbalta (duloxetine) · Helped
I improved on Cymbalta. I am at 38 months and went from bedbound to working a few days a week
In context ↗ - LDN · Helped
The LDN has helped a lot.
In context ↗ - liposomal luteolin · Helped
It seems to be helping it is 500 mg.
In context ↗ - mito defense · Helped
LDN, ginko biloba, liposomal luteolin 500mg, and mito defense helped
In context ↗ - ashwagandha · Helped
It helps me. I take it. I like the tincture the best though better absorption.
In context ↗ - liquid CoQ10 with vitamin C and E · Helped
COQ10 C+E I saw additional additional improvements
In context ↗ - CPAP · Helped
my cpap has decreased my fatigue
In context ↗ - Adderall · Worse
I took Adderall so I could finish school work which I didn't get done. Now I'm crashed.
In context ↗ - CBT / ACT · No change
I tried mindfulness, cbt, act nothing worked
In context ↗ - meditation / mindfulness · No change
I meditate, do acupuncture, accept my limitations
In context ↗ - pacing · Helped
You have to stay within the boundaries that your body can handle. You go outside those boundaries you will get sicker.
In context ↗ - migraine glasses · Helped
The migraine glasses help to reduce the strain so my eyes don't go blurry as fast at end of day.
In context ↗ - magnesium oil, cream and Epsom salt baths · Helped
magnesium salts in bath ... These have helped me a lot.
In context ↗ - Cannabis (THC, marijuana) · Not said
I am noticing increased heart tachycardia with increased thc
In context ↗ - COVID vaccination as treatment · Not said
the 1st shot made me sick for 24 days horrible flare of symptoms.
In context ↗
Approaches: H1 antihistamines · SNRIs · Alternative therapies · Diet · Other drugs and medicines · Supplements
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 |
|---|---|---|---|
| March 2020 | COVID-19 onset; dysautonomia, fevers and faintingI got sick in March 2020In context ↗ | Moderate | |
| January 2021 | promethazine withdrawn; baseline fellThat made me crash. Baseline downIn context ↗ | Moderate | |
| 22 months post-infection | bedbound for months after a 1.5-mile flat walkI was bedbound for 3 monthsIn context ↗ | Severe | |
| September 2022 | medication switch to fibromyalgia drugs; started improvingI started improving by my neurologist changing all my meds to fibromyalgia medsIn context ↗ | Moderate | |
| March 2023 | started LDN and supplement regimen; working 3 days a weekI can work 3 days a week now!In context ↗ | Mild | Low-dose naltrexone |
| May 2023 | working four days a week; close to supporting herselfI am now working 4 days a week.In context ↗ | Mild | Low-dose naltrexone |
| July 2023 | still mild; temperature dysregulation on overexertionit still happens if I push myself out of my envelopeIn context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Diphenhydramine (Benadryl)“Increasing anxiety I discontinued taking it” In context ↗ Mood or psychiatric effects
- Migraine cocktail (IV), Promethazine (Phenergan), Hydroxyzine (Atarax, Vistaril), Diphenhydramine (Benadryl), Cetirizine (Zyrtec)“I had a reaction so extreme I ran out of ER was in full blown panic for 38 hours horrid.” In context ↗ Mood or psychiatric effects
- Physical therapy / physiotherapy“I did go in for 1 session but it made me sick for 2 days.” In context ↗ Made symptoms worse
- CBT and psychotherapy, Everyday exercise and activity“Advice that had devastating consequences.” In context ↗ Made symptoms worse
- Acupuncture“I go to acupuncture but it can cause me to crash really easy.” In context ↗ Made symptoms worse
- “it aggravates my heart problems.” In context ↗ Heart rhythm problems
- Cannabis (THC, marijuana)“I am noticing increased heart tachycardia with increased thc” In context ↗ Heart rhythm problems
- “the amount of cbd cannabaniods were making me nauseous/diarrhea” In context ↗ Gut side effects
- “it really increases my neuro issues.” In context ↗ Made symptoms worse
- Baicalein and quercetin“I found those WAY to taxing on my system” In context ↗ Made symptoms worse
- “I've stopped taking all the supplements because they were to hard on my system. They were starting to make me really nauseous.” In context ↗ Gut side effects
- Botox (botulinum toxin)“The first time I got botox it lead to my first crash.” In context ↗ Made symptoms worse
- Botox (botulinum toxin)“I think it causes fatigue and muscle weakness though” In context ↗ Side effects
- Propranolol (Inderal)“it causes hair loss” In context ↗ Other
- COVID vaccination as treatment“the 1st shot made me sick for 24 days horrible flare of symptoms.” In context ↗ Autoimmune or inflammatory flare
- Amphetamine salts (Adderall)“I took Adderall so I could finish school work which I didn't get done. Now I'm crashed.” In context ↗ Made symptoms worse
- Probiotics and fermented foods“I have a refrigerated probiotic but it contains more acidophilus I think it makes me worse.” In context ↗ Made symptoms worse
- Iron infusion / ferritin repletion“This particular supplement made my gastrointestinal system worse than its ever been.” In context ↗ Gut side effects
- Ashwagandha, Ginkgo biloba“it burns 🔥 like he'll” In context ↗ Gut side effects
- Low-dose naltrexone“If I go up above 1.5 I feel my nervous system ramps up too much I crash.” In context ↗ Made symptoms worse
- Propranolol (Inderal), Topiramate (Topamax), Botox (botulinum toxin), Rizatriptan (Maxalt)“I was basically turned into an absolute zombie to get rid of the migraines.” In context ↗ Side effects
- H2 blockers (unspecified), Famotidine (Pepcid)“I was doing Zantac but it destroy the microbiome.” In context ↗ Gut side effects
- Botox (botulinum toxin)“I think it is from the botox that I got because of LC migraines.” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
PEM if I do too much
In context ↗ - Brain fog
I cannot concentrate since getting sick.
In context ↗ - POTS & dysautonomia
I still have dizziness.
In context ↗ - Mast cell (MCAS) & allergies
I only have 2-4 attacks a month now.
In context ↗ - Sleep problems
I sleep 10-12 hours a night.
In context ↗ - Pain & fibromyalgia
I have pain everyday because of fibromyalgia
In context ↗ - Headaches & migraine
I still have head pressure
In context ↗ - Gut problems
My gut is still a mess.
In context ↗ - Light & noise sensitivity
I still can't take any sensory stimuli after @ 2 or I crash.
In context ↗ - Heart symptoms & palpitations
My heart problems were 1.5 years ago.
In context ↗ - Muscle weakness
Lots of fibromyalgia pain also and muscle degeneration.
In context ↗ - Neuropathy & tingling
pain and burning
In context ↗ - Anxiety & low mood
I used to have panic attacks.
In context ↗ - Temperature regulation
it still happens if I push myself out of my envelope
In context ↗ - Vision problems
vision disturbances
In context ↗ - Hair loss
my hair is falling out it has not stopped
In context ↗
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