ME/CFS
Severe → somewhat betterIll 7 years before improving or writing
Almost zero functioning with ME/CFS, somewhat better with methyl B vitamins
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Jun 2012
In their words
- Condition: ME/CFS
My CFIDS seemed to start with a drop dead flu in Sept 2005.
In context ↗ - At worst: Severe
one of the worst long runs of multiple healthproblems and almost zero functioning ever, in my 6 years now of this
In context ↗ - Now: Somewhat better
Only thing that has really helped in 6 years.
In context ↗ - Began after: another virus
my first dropdead flu that started this nightmare in September 2005 (which turned out to be cytomegalovirus)
In context ↗
Read from 17 of their posts and comments; links to the 14 this page draws on
Summary
Their ME/CFS began with a cytomegalovirus flu in September 2005. For years they had repeated flu-like illnesses, fibromyalgia and rib pain, and by 2011 almost zero functioning. Prescription methyl B vitamins (metanx) were the only thing that clearly helped in six years, easing rib pain and brain fog; D-ribose, NAC and milk thistle helped particular symptoms, and vitamin D may have reduced flu but didn't lift fatigue. They still described themselves as ill in 2012.
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What they tried
What they credit
Also tried
adaptogenic supplements· Helped a lot · wore offadrenal supplement advised by my dr· Helped · wore offprescription vitamin D· Helpedeliminating aspartame and most nuts· Helpedinjections of cortizone· No changewhey· Worseoliveleaf and other antivirals· WorseIbuprofen and other NSAIDs· Worseantihistamine prescribed for anxiety· Much worsemindbody workshops· Much worsefibromyalgia exercise classes· Much worseDr Teitlebaum's CFS multivitamin· Not saidselenium· Not saidJarrow brand adrenal optimizer· Not saidstretches in an epsom salt bath· Not said
Their words about each treatment
- milk thistle · Helped
I took/take 1800 mgs of good quality milk thistle ... it is managable now.
In context ↗ - whey · Worse
i was taking whey at first to make glutithione ... and i got very sick
In context ↗ - oliveleaf and other antivirals · Worse
I have used many antivirals like oliveleaf etc only to get dieoff syndrome and become immensely sick and nonfunctioning
In context ↗ - D-ribose · Helped
I took it for almost two years. I felt better with it than without it
In context ↗ - injections of cortizone · No change
It really hurt and didn't really help as the treatment was almost as painful as the condition
In context ↗ - adrenal supplement advised by my dr · Helped
I took one supplement advised by my dr then and it worked for about two years and stopped. Nothing worked and i got much worse
In context ↗ - metanx (prescription methyl b vitamins) · Helped a lot
Only thing that has really helped in 6 years.
In context ↗ - NAC · Helped
I take GNC brand NAC and Ecletic Institute brand milk thistle to create the glutithione. ... I feel very much better with it than without.
In context ↗ - Dr Teitlebaum's CFS multivitamin · Not said
since it is high in B vitamins, I have had to take it every other day or every three days as high vitamin b vitamins and food make me super sick
In context ↗ - adaptogenic supplements · Helped a lot
I took adaptogenic (help lower cortisol when too high and raise when it's too lowsupplements for a few years. really helped. but doesn't anymore.
In context ↗ - antihistamine prescribed for anxiety · Much worse
turns out it is an antihistmine and is too much for the fragile body systems of cfs. I have had one of the worst long runs of multiple healthproblems
In context ↗ - prescription vitamin D · Helped
my fatigue is not better but I realize I havent had one flu since early October-not even mild
In context ↗ - selenium · Not said
The selenium/NAC I bought from my pharmacy I can safely increase from one a day to three, so I am trying that starting today.
In context ↗ - Jarrow brand adrenal optimizer · Not said
Nothing worked and i got much worse and now take Jarrow brand adrenal optimizer.
In context ↗ - mindbody workshops · Much worse
my attempts at going to some mindbody workshops and fibromyalgia exercise classes have all resulted in disastrous crashes and illness following
In context ↗ - fibromyalgia exercise classes · Much worse
fibromyalgia exercise classes have all resulted in disastrous crashes and illness following. Even tho they were super slow and simple.
In context ↗ - eliminating aspartame and most nuts · Helped
I had to give up things with nutrisweet in them as aspartame agravated my fibro terribly. ... It did help alot to eliminate them.
In context ↗ - stretches in an epsom salt bath · Not said
I do do stretches that i learned in dance class years ago in the tub while soaking in epsom salts. ... And no bad after affects or crashes.
In context ↗ - Ibuprofen and other NSAIDs · Worse
Ibuprofen and other nsaids deplete glutithione and often (at least with me) I end up paying for it in rebound flareups.
In context ↗
Approaches: 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. The chart starts 4.8 years after onset: the story doesn’t say how ill they were before that. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| September 2005 | Illness begins with a flu that turned out to be cytomegalovirusmy first dropdead flu that started this nightmare in September 2005 (which turned out to be cytomegalovirus)In context ↗ | Not stated | |
| 2006-2007, 1-1.5 years in | Fibromyalgia and costochondritis pain developmy fibro didn't really kick in until 1 -1.5 years in- before that it was just achiness and weaknessIn context ↗ | Not stated | |
| 2010 | Prescription methyl B vitamins startedMy dr put me on prescription (methyl b) vitamins last year. Only thing that has really helped in 6 years.In context ↗ | Moderate | Vitamin B complex |
| April to October 2011 | Antihistamine prescribed for anxiety in hospitalI have had one of the worst long runs of multiple healthproblems and almost zero functioning ever, in my 6 years now of this.In context ↗ | Severe | |
| October 2011 | Weekly vitamin D and extra selenium; frequent flus stopSo my fatigue is not better but I realize I havent had one flu since early October-not even mild.In context ↗ | Not stated | Vitamin D and sun exposure |
| June 2012 | Can do stretches in the bath without crashing; cleaning much lessI do do stretches that i learned in dance class years ago in the tub while soaking in epsom salts. So i have no trouble with that. And no bad after affects or crashes.In context ↗ | Moderate |
Adverse events
- Antimicrobial botanicals (other)“I have used many antivirals like oliveleaf etc only to get dieoff syndrome and become immensely sick and nonfunctioning until many days after just getting off the antiviral/immuneboosting supplement.” In context ↗ Herx / die-off reaction
- H1 antihistamines (unspecified)“turns out it is an antihistmine and is too much for the fragile body systems of cfs. I have had one of the worst long runs of multiple healthproblems and almost zero functioning ever” In context ↗ Made symptoms worse
- NSAIDs (unspecified)“Ibuprofen and other nsaids deplete glutithione and often (at least with me) I end up paying for it in rebound flareups.” In context ↗ Made symptoms worse
- “since it is high in B vitamins, I have had to take it every other day or every three days as high vitamin b vitamins and food make me super sick” In context ↗ Made symptoms worse
- “the procedure very painful injections of cortizone. It really hurt and didn't really help” In context ↗ Other
- Whey protein“i was taking whey at first to make glutithione -but not that brand) and i got very sick” In context ↗ Made symptoms worse
- Everyday exercise and activity“my attempts at going to some mindbody workshops and fibromyalgia exercise classes have all resulted in disastrous crashes and illness following” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsMuscle weaknessPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
my attempts at going to some mindbody workshops and fibromyalgia exercise classes have all resulted in disastrous crashes and illness following
In context ↗ - Brain fog
i always considered it as part of the brain fog, etc.
In context ↗ - Flu-like symptoms
Ever since I have repeated flus that last anywhere from three days to three weeks
In context ↗ - Pain & fibromyalgia
my fibro didn't really kick in until 1 -1.5 years in
In context ↗ - Anxiety & low mood
I have been hospitalized fro my depression
In context ↗ - Muscle weakness
before that it was just achiness and weakness
In context ↗
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