ME/CFS
Very severe → relapsedIll 2 years before improving or writingNeeds ongoing treatment
Mostly bedbound with ME/CFS, better on paleo diet and supplements, then set back by mould
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2 years
- Last post
- Jun 2021
In their words
- Condition: ME/CFS
I believe my CFS is caused by exposure to mold
In context ↗ - At worst: Very severe
I've gone from being 100% bedbound unable to watch TV to playing soccer and swimming again.
In context ↗ - Now: Relapsed
it actually allowed me a remission that lasted years ... POTS and MCAS, PEM, etc. came back with a vengeance. I'm struggling to get back to that spot.
In context ↗ - Began after: mould or toxic exposure
I have no doubt that mold is what triggered my ME/CFS.
Read from 184 of their posts and comments; links to the 65 this page draws on
- Nov 2016
- Nov 2015
- Jun 2020
- May 2013
- Nov 2015
- Aug 2019
- Jun 2013
- Jun 2013
- Jun 2013
- Aug 2013
- Aug 2019
- Feb 2016
- Feb 2014
- Oct 2013
- Nov 2013
- Sep 2013
- Oct 2013
- Jan 2014
- Dec 2013
- Jan 2014
- Feb 2014
- Jan 2014
- Jan 2014
- Jan 2014
- Jan 2014
- Jan 2014
- Apr 2014
- Mar 2016
- Feb 2014
- Aug 2013
- Feb 2015
- May 2015
- Mar 2015
- Jan 2016
- Feb 2016
- Feb 2016
- Aug 2018
- Jan 2014
- Aug 2015
- Mar 2020
- May 2020
- Jun 2021
- Jun 2020
- May 2015
- Aug 2019
- Dec 2019
- Jun 2013
- Oct 2014
- Oct 2013
- Jan 2016
- Nov 2016
- Feb 2014
- Sep 2014
- Jun 2013
- Dec 2013
- Jan 2014
- Jul 2014
- Mar 2016
- Jul 2016
- Feb 2019
- Aug 2019
- Aug 2018
- Jun 2017
- Sep 2019
- May 2020
Summary
Lake 94400's illness started after glandular fever/mono, and he became mostly bedbound from March 2013, with daily panic attacks, depression and unrefreshing sleep. A paleo diet, supplements and leaving a mouldy house brought major improvements; he was able to drive and play soccer, though re-exposure to mould set him back. By 2015 he reported feeling pretty great, with only minimal crashes.
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What they tried
What they credit
Paxil· Helped a lot · wore offOmega 3 fish oil· Helped a lotPaleo diet· Helped a lot · mainMold avoidance· Helped a lot · mainRhodiola Rosea· HelpedPantethine· HelpedMultivitamin· HelpedL-Theanine· HelpedChromium Picolinate· HelpedInositol· HelpedVSL3 probiotic and kombucha tea· HelpedPhosphatidylcholine· HelpedLiquid Minerals· HelpedCal-Mag Butyrate· HelpedNiacinamide· HelpedActivated Charcoal· HelpedE-Lyte Drink· HelpedVitamin C· HelpedDigestive Enzymes· HelpedTrazodone· HelpedPacing· HelpedProzac· Helped
Also tried
Allergy shots· Helped a lotvitamin B shot· HelpedKlonopin· HelpedAdrenal Focus· HelpedThymic Protein A (Pro Boost)· HelpedBentonite clay· HelpedCholestyramine· HelpedTurmeric· HelpedDiaphragmatic Breathing· HelpedClonidine· HelpedMelatonin· HelpedAntihistamines (Claritin)· HelpedSteroid nasal sprays (Nasonex, Flonase)· HelpedAnti-inflammatory meds· HelpedVitamin D· HelpedQuercetin· HelpedCromolyn· HelpedPepcid· HelpedIV saline· Helpedtherapy· No changeCorvalen Ribose· No changeMeyer's cocktail· No changeModafinil· No changeDoxycycline· No changeMidodrine· No changeMestinon· No changeCoQ10· No changeWellbutrin· WorseSwimming· WorseLow Dose Naltrexone· WorseL-Methylfolate and Methylcobalamin· WorseL-Methylfolate and Methylcobalamin· WorseAdderall· WorsePrednisone· WorseHydrocortisone / cortisol· WorseCelexa· Much worseLexapro· Much worseVitamin C IV· Much worseLauricidin· Much worseMedical Marijuana· Much worseIncreasing calories· Not said
Their words about each treatment
- vitamin B shot · Helped
I was given a vitamin B shot the other day and it helped make me feel not so insanely depressed.
In context ↗ - Paxil · Helped a lot
I actually believe (pretty damn sure) that my SSRI (edit: in conjunction with the things I list below) got me to a point of 85-90% capacity back
In context ↗ - Celexa · Much worse
Lexapro and celexa only made my depression worse. Much worse.
In context ↗ - Wellbutrin · Worse
I've tried Wellbutrin and good god it was horrible. I've never had such bad withdrawals from a drug in my life.
In context ↗ - Lexapro · Much worse
if the lexapro didn't work (it didn't and was hell in the trial and error period
In context ↗ - therapy · No change
I'm also in therapy. Hasn't seemed to help much yet but I need to open up more.
In context ↗ - Rhodiola Rosea · Helped
Rhodiola Rosea 500 mg twice daily morning and mid afternoon
In context ↗ - Adrenal Focus · Helped
Adrenal Focus 2 capsules twice daily morning and lunch
In context ↗ - Pantethine · Helped
Pantethine 250 mg twice daily morning and lunch
In context ↗ - Corvalen Ribose · No change
It's been a long time since I've taken it, but I don't remember it helping at all.
In context ↗ - Multivitamin · Helped
Multivitamin once daily
In context ↗ - Omega 3 fish oil · Helped a lot
I was able to curb anxiety and depression almost over night
In context ↗ - L-Theanine · Helped
I take about 1000 to 1500 mg a day of L-Theanine. It does help me relax and calms my anxious mind.
In context ↗ - Chromium Picolinate · Helped
Chromium Picolinate 500 mcg twice daily morning and lunch
In context ↗ - Thymic Protein A (Pro Boost) · Helped
Thymic Protein A (marketed as Pro Boost) 1 packet dissolved under tongue 3 times daily
In context ↗ - Vitamin C IV · Much worse
I'm having a bad one right now. Been going for 3 weeks so far. Has made me more bedridden than I already am!
In context ↗ - Meyer's cocktail · No change
I've done a Meyer's cocktail as well and didn't notice anything.
In context ↗ - Swimming · Worse
swimming two hundred yards (4 laps) was conservative but obviously my body disagreed
In context ↗ - Low Dose Naltrexone · Worse
I've taken 3mg for 5 days. My advice is to not start anywhere near that high. It has made me very sick.
In context ↗ - Paleo diet · Helped a lot
The paleo diet has made the single biggest difference of anything I've done. It has been fantastic for me.
In context ↗ - Inositol · Helped
it helped a TON with my anxiety!
In context ↗ - VSL3 probiotic and kombucha tea · Helped
VSL3 Probiotic ... Kombucha Tea
In context ↗ - Phosphatidylcholine · Helped
high dose phospholipid therapy? It has worked absolute wonders for me.
In context ↗ - Liquid Minerals · Helped
Liquid Minerals (Potassium, Zinc, Magnesium, Chromium, Manganese, Molybdenum, Vitamin C)
In context ↗ - Cal-Mag Butyrate · Helped
Cal-Mag Butyrate (Butyric Acid makes up the majority of the very bottom lining of the gut
In context ↗ - Activated Charcoal · Helped
I take activated charcoal at night
In context ↗ - Vitamin C · Helped
Vitamin C (4+ grams a day)
In context ↗ - Digestive Enzymes · Helped
Digestive Enzymes
In context ↗ - L-Methylfolate and Methylcobalamin · Worse
I felt immediate effects from L-Methylfolate and Methylcobalamin and Adenosylcobalamin. The problem was that they induced extreme detox
In context ↗ - Bentonite clay · Helped
Works nicely for me. Relaxes me and makes me feel better.
In context ↗ - Lauricidin · Much worse
I couldn't handle monolaurin. It put me in a horrible state.
In context ↗ - Cholestyramine · Helped
Once I introduced the cholestyramine yesterday I noticed a huge difference in muscle pain
In context ↗ - Turmeric · Helped
I started taking tumeric
In context ↗ - Diaphragmatic Breathing · Helped
I've learned how to breathe in a manner that activates the parasympathetic nervous system
In context ↗ - Medical Marijuana · Much worse
Gives me horrible panic attacks and derealization.
In context ↗ - Modafinil · No change
When I took it (quite a few years ago) I literally didn't even feel it.
In context ↗ - Adderall · Worse
Adderall wasn't worth it for me. Didn't energize me enough and the emotional crash was too much to handle
In context ↗ - Clonidine · Helped
Clonidine .1mg x 2
In context ↗ - Melatonin · Helped
Melatonin Sublingual 1-2mg
In context ↗ - Doxycycline · No change
Took it for quite a long time as well.
In context ↗ - Increasing calories · Not said
Yeah, I got fat :-(
In context ↗ - Antihistamines (Claritin) · Helped
Antihistamines, steroids sprays (nasonex), turmeric, and anti inflammatories in general help a lot.
In context ↗ - Steroid nasal sprays (Nasonex, Flonase) · Helped
steroids sprays (nasonex)
In context ↗ - Anti-inflammatory meds · Helped
anti inflammatories in general help a lot
In context ↗ - Allergy shots · Helped a lot
My symptoms improved hugely by getting allergy shots.
In context ↗ - Vitamin D · Helped
I take 6,000 IU a day plus sitting out in the sun
In context ↗ - Pacing · Helped
As long as I take a nice steady pace while doing all of those things i'm fine.
In context ↗ - Midodrine · No change
I've taken midodrine and mestinon and neither did anything good or bad
In context ↗ - Quercetin · Helped
I take quercetin, cromolyn, claritin, pepcid, turmeric
In context ↗ - Prednisone · Worse
I only took it for for about 7 days or so, but coming off was terrible.
In context ↗ - Prozac · Helped
I'm on prozac right now and I saw major improvements after 4-5 weeks
In context ↗ - CoQ10 · No change
D-Ribose or COQ10. They didn't do anything for me personally
In context ↗ - Mold avoidance · Helped a lot
Mold avoidance and allergy shots were the main things that helped.
In context ↗ - IV saline · Helped
Went in for IV saline today. Feeling better than I did the day after
In context ↗ - Hydrocortisone / cortisol · Worse
I can't tell you how sick I've got after that. It really was the tipping point for me getting worse.
In context ↗
Approaches: POTS medication · SSRIs · Amino acids and carnitine · Diet · Mould avoidance · Other antidepressants · Pacing · 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 |
|---|---|---|---|
| 2012 | fell ill; a hard crash that summer, then recovered and went back to normal lifeIt wasn't until last summer that it crashed home and hard. I was able to recover from it (no idea what was going on) and went about my life againIn context ↗ | Mild | |
| March 2013 | bedbound for two months with reactivated mono and daily panic attacks, left school and an internshipI've been sick sick (bed bound mostly) since March of this year with a few weeks of exception.In context ↗ | Very severe | |
| December 2013 | started paleo diet and supplements; left the house and drove for the first time in over a monthyesterday for the first time in over a month I was able to leave my house unassisted(and it not being a doctor's appointment) and drive my car.In context ↗ | Severe | Elimination diets (other) |
| January 2014 | back to 40% of former health on diet and supplementsI'm back to 40% of my former health and heading upwardIn context ↗ | Moderate | Elimination diets (other) |
| July 2014 | left a mouldy house; could drive 30 minutes, take a 45-minute train trip and kick a ball for 20 minutes without crashingI was also able to kick a soccer ball back and forth (no extended running, but plenty of movement) for 20 minutes. The next day there was no crashIn context ↗ | Mild | Mold avoidance / CIRS protocol |
| August 2015 | soccer games, concerts, travel and working out againI've got a good semblance of a life back right now. Was just at a soccer game last weekendIn context ↗ | Mild | Mold avoidance / CIRS protocol |
| April 2016 | started a part-time job, 6 hours a week rising to 9, and planned one school classI'm working a pretty stress free job 9 hours a week and I'm applying to finish school.In context ↗ | Mild | Mold avoidance / CIRS protocol |
| July 2016 | working 12 hours a week and back playing and recording musicNow I'm working 12 hours a week and back playing and recording music.In context ↗ | Mild | Mold avoidance / CIRS protocol |
| February 2019 | about 85% back to full health, exercising intenselyI'd put myself at about 85% back to full health.In context ↗ | Near normal | Mold avoidance / CIRS protocol |
| March 2019 | crashed after tapering off Paxil, with old ME symptoms returningAbout 4 months in to coming off I crashed hard and have only gotten worse.In context ↗ | Moderate | |
| June 2020 | improved on Prozac for 4-5 weeks, then crashed after a walk and set off an MCAS flareI pushed too hard on a walk and crashed. That set off MCAS and I'm struggling to get all of that under control right now.In context ↗ | Moderate |
Adverse events
- Amphetamine salts (Adderall)“Didn't energize me enough and the emotional crash was too much to handle for the roughly 3 hours of feeling good.” In context ↗ Mood or psychiatric effects
- Citalopram (Celexa), Escitalopram (Lexapro)“Lexapro and celexa only made my depression worse. Much worse.” In context ↗ Mood or psychiatric effects
- Paroxetine (Paxil)“Paxil is the only one that has done anything and all it did was stabilize my mood. I just felt so flat and that's not the person I normally am.” In context ↗ Mood or psychiatric effects
- Bupropion (Wellbutrin)“I've tried Wellbutrin and good god it was horrible. I've never had such bad withdrawals from a drug in my life.” In context ↗ Withdrawal problems
- Bupropion (Wellbutrin)“Couldn't get to sleep to save my life, made me incredibly anxious and even after only taking it for 4 days I had withdrawal effects.” In context ↗ Insomnia from treatment
- IV vitamins and Myers cocktail“I'm having a bad one right now. Been going for 3 weeks so far. Has made me more bedridden than I already am!” In context ↗ Herx / die-off reaction
- Low-dose naltrexone“after going through absolute hell for the past 3 days (mood swings, nausea, sore muscles, aches and pains, etc) i'm going to take a break from the LDN” In context ↗ Herx / die-off reaction
- Low-dose naltrexone“I started at 4.5mg and it was an absolute nightmare. I felt so insanely ill.” In context ↗ Made symptoms worse
- Methylfolate (L-methylfolate, 5-MTHF), Vitamin B12“The problem was that they induced extreme detox (so un pleasant I couldn't continue after 2 days).” In context ↗ Herx / die-off reaction
- Vitamin B12“a while back I couldn't tolerate even the smallest dose of B12 and folate. It used to be that when I would take folate I couldn't catch my breath.” In context ↗ Made symptoms worse
- Monolaurin (Lauricidin)“Lauricidin made me so incredibly sick from detox, but that tells me it works” In context ↗ Herx / die-off reaction
- Phosphatidylcholine“I've been taking high amounts of fatty acids (Phosphatidylcholine) and experienced a dramatic increase in symptoms (and pain that i've never had before)” In context ↗ Made symptoms worse
- Hydrocortisone / cortisol“I can't tell you how sick I've got after that. It really was the tipping point for me getting worse.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“Gives me horrible panic attacks and derealization. It is an absolute nightmare for me and the worst thing I've ever put in my body.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I'll get out there now and have the stamina of an 80 year old man and then be bedridden for the next several days.
In context ↗ - Sleep problems
one of the largest problems that still has never gone away is my inability to sleep
In context ↗ - Anxiety & low mood
I've got it well under control now, but if I don't get enough rest I'm liable to get a panic attack.
In context ↗ - POTS & dysautonomia
It took me months to realize that coming off Paxil basically unmasked undiagnosed POTS.
In context ↗ - Mast cell (MCAS) & allergies
I developed me/cfs, POTS, MCAS.
In context ↗
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