ME/CFS
Severe → no benefitIll for 10 years
Bedbound with ME/CFS for four years, still bedbound with no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Sep 2014
In their words
- Condition: ME/CFS
having been extremely il for 10 years....bedbound for the past 4 years
In context ↗ - At worst: Severe
stuck in bed (i have 13 yo son, so it makes it even worse....not being able to participate in any of his school, sports, etc)
In context ↗ - Now: No benefit
tried tons of different treatments and have gotten nowhere
In context ↗ - Began after: injury or surgery
my illness really kicked off after IVF, peri menopause and now menopause.
- Says they never had: Brain fog
my symptoms are mostly energy related vs. brain fog or cognitive...thank goodness. i can read, watch TV, talk.
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
A person in Berkeley, California, who had been extremely ill for ten years and was bedbound for the last four, described many treatments that made them sicker or didn't help: antibiotics for Lyme, antivirals, methylation and mitochondrial supplements, and retrovirals they said wiped out their remaining energy. The only thing that didn't make them ill was opiates for pain; propranolol was the best OI medication but still left them bedbound. They reported no improvement and were still bedbound in 2014.
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What they tried
Also tried
opiates· Helpedpropranlol· Helpedhs creams· No changesaline infusions· No changeoral and iv abx for lyme· Worsevaltrex· Worsefamvir· Worsevalcyte· Worseyasko's methyl program· Worseyogurt gcmaf· Worseanti depressants· WorseAntibiotics (unspecified)· Worseviread and one other· Much worseb vitamins· Not saidc· Not saidmeyers, cocktails· Not saidribose· Not saidoils· Not saidmito supplements (like myhill recommends)· Not saidacupuncture· Not saidenergy healing· Not saidlightening process· Not saidhomeopathy· Not saidchinese herbs· Not said
Their words about each treatment
- oral and iv abx for lyme · Worse
1st 2 years treated for lyme w/oral and iv abx....cant remember all the different kinds we tried
In context ↗ - b vitamins · Not said
b vitamins, c, meyers, cocktails, ribose, oils.....mito supplements (like myhill recommends)
In context ↗ - valtrex · Worse
tried, valtrex, famvir and finally valcyte...all made me super duper sick but even after months never saw any improvement.
In context ↗ - yasko's methyl program · Worse
tried yasko's methyl program...once again,,,toxic sick feeling and no improvement.
In context ↗ - viread and one other · Much worse
viread and one other....not azt...that is when i crashed really hard again
In context ↗ - hs creams · No change
tried hs creams and supplements......never saw any improvement after 2 years of use
In context ↗ - acupuncture · Not said
have done acupuncture w/many diff practitioners
In context ↗ - energy healing · Not said
energy healing, lightening process
In context ↗ - opiates · Helped
the only thing i can take that does not make me feel ill is some opiates for pain relief
In context ↗ - yogurt gcmaf · Worse
i did try yogurt gcmaf thru cheney too....no help; think that made me worse too.
In context ↗ - homeopathy · Not said
have tried homeopathy a couple of times and chinese herbs too.
In context ↗ - anti depressants · Worse
anti depressants make me feel like death....terrible heart palpitations and anxiety...no relief from them at all
In context ↗ - saline infusions · No change
i did try saline infusions for about 1 year.....1x/week...dint help either.
In context ↗ - propranlol · Helped
the best one was propranlol (sp?)
In context ↗ - Antibiotics (unspecified) · Worse
1st 2 years treated for lyme w/oral and iv abx ... made me super duper sick.
In context ↗
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 6 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2004 | ME/CFS began after IVF and perimenopausehaving been extremely il for 10 yearsIn context ↗ | Not stated |
| 2010 | crashed hard on antiretroviral drugs and became bedboundthat is when i crashed really hard again ... bedbound for the past 4 years | Severe |
| 2014-09-09 | still bedbound despite many treatments; propranolol tolerated but not enoughbut still kept me bedboundIn context ↗ | Severe |
Adverse events
- Antibiotics (unspecified)“1st 2 years treated for lyme w/oral and iv abx ... made me super duper sick.” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“tried, valtrex, famvir and finally valcyte...all made me super duper sick” In context ↗ Made symptoms worse
- Famvir / famciclovir (Pridgen)“tried, valtrex, famvir and finally valcyte...all made me super duper sick” In context ↗ Made symptoms worse
- Valcyte / valganciclovir“tried, valtrex, famvir and finally valcyte...all made me super duper sick” In context ↗ Made symptoms worse
- Methylation support (unspecified)“tried yasko's methyl program...once again,,,toxic sick feeling and no improvement” In context ↗ Made symptoms worse
- Tenofovir (Viread, Vemlidy)“when mikovitz claimed xmrv tried to retro viral drugs, viread and one other....not azt...that is when i crashed really hard again” In context ↗ Made symptoms worse
- GcMAF, Goleic and Bravo yoghurt“i did try yogurt gcmaf thru cheney too....no help; think that made me worse too” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“anti depressants make me feel like death....terrible heart palpitations and anxiety” In context ↗ Heart rhythm problems
- Antidepressants (unspecified)“terrible heart palpitations and anxiety...no relief from them at all” In context ↗ Mood or psychiatric effects
- “others caused too many negative side affects.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodGut problemsHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaSleep problems
Their words about their symptoms
- POTS & dysautonomia
big problem is standing for long though....HR increases dramatically and already low BP drops even more
In context ↗ - Sleep problems
i wake up feeling the WORSE.....however in evening nearly feel normal again
In context ↗ - Gut problems
i wake up feeling the WORSE.....nauseaus (sp?)
In context ↗ - Anxiety & low mood
god, it's been a crazy, depressing 10 years
In context ↗ - Muscle weakness
nauseaus (sp?), anxious, weak
In context ↗ - Pain & fibromyalgia
the only thing i can take that does not make me feel ill is some opiates for pain relief....only thing that takes pain away
In context ↗ - Heart symptoms & palpitations
anti depressants make me feel like death....terrible heart palpitations and anxiety
In context ↗