True confessions - What didn't work in the long run

Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,495
Deciding to Not Seek the Cause of My Misfortune (this illness) I did about four years worth of ignoring it. Not accepting its existance. Doing meditative work in a chair. Every day pretty much.

so after all that I got worse, so it didnt' work. did it help reduce my stress? yes, probably.
 
H

hapl808

Senior Member
Messages
2,341
Wishful said:
I keep hoping for chocolate or donuts or bacon to be a treatment. :)
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It's the synergy that's important. Possibly your ratios of chocolate to donuts or bacon was off. The bacon offsets the chocolate receptors, so the balance is important. You need regular experimentation in order to find homeostasis. The donuts act as a binder. So if you have too much chocolate and bacon and start to feel sick, be sure to take enough donuts until you feel better. If you feel sicker after adding the donuts to the bacon and chocolate, that's just a healthy herxheimer reaction. No need to be concerned; that's how you know it's working.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,495
wabi-sabi said:
healthy detox
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2 frozen (rice) waffles * editted to indicate I cook them in a pan first..., bittersweet chocolet chips, creame cheese and butter- you can forgo both the donut and the bacon. The second waffle on top,melts the choc chips nicely.

save the bacon for a ripe tomato day. forgo donut.
 
C

cporro

Messages
37
worked: wellbutrin, long term high dose vit C (2-4grams a day for >6 months)

may have worked for a while: tulsi, alcohol, coffee, thyroid (natural), low dose naltrexone.

didn't work: chelation, exercise (many forms), testosterone, injected b12, sleep hygiene, trying to think positive and any of that stuff, almost all supps. iodine.

made things worse: B9, zinc.

When I feel well i go live my life. When i feel bad I look for solutions so can I live normal.

A few thoughts Ive had...

1) I (and many others) might be permanently damaged. There might not be a return to normal.

2) on the optimistic side as independent researches we are unrestrained. unlike medical doctors we are free to experiment on ourselves. we aren't locked into a generally narrow (medical school) and profit driven system. You doctor will likely not recommend a 50 year old patent expired drug, or herbs, etc. I would support a movement where chronically ill people could get meds with less doctor gate keeping. If they can't help us we should be able to give it a shot. i'd rather guinea pig myself then lie in bed for 2 years.

3) I have read a lot but almost all of my learning comes from trying. Narrow things down with research and try.

4) as others have said... interventions from doctors have done more harm than my own experiments. been put on zinc and B9. worse. My depression and fatigue have been far worse after getting off wellbutrin which in itself was a terrible ordeal.

5) I noticed that alcohol and caffeine are all anti-inflammatory. as is wellbutrin. it has occurred to me to use alcohol as a medicine. dose control 1-4 drinks per day.
 
W

Wishful

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6,116
Location
Alberta
cporro said:
I would support a movement where chronically ill people could get meds with less doctor gate keeping.
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Me too, and even for not chronically ill people. If you've got an infected tooth and need antibiotics to keep you from agony until you can get to a dentist (somehow it always happens in the evening just before a long weekend, right?) why waste a doctor's time and the patient's time? The pharmacist can check the patient's computer record to make sure that they aren't asking for it frequently. I'm sure there are other drugs that a pharmacist could safely prescribe using common sense.

As for chronically ill people who don't have any viable treatments, I'd certainly support the ability to order small amounts of reasonably safe drugs from a pharmacist in the search for something that might help. As far as I can see, blocking access to such experimental amounts of drugs isn't benefiting anyone.
 
Insomniac

Insomniac

Messages
767
Location
Israel
cporro said:
2) I would support a movement where chronically ill people could get meds with less doctor gate keeping. If they can't help us we should be able to give it a shot. i'd rather guinea pig myself then lie in bed for 2 years.
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I agree. Apparently that was the state of the law in the USA pre 1930 or 1920.

Didn't work:
LDN, was so desperate that I tried it twice.
tumeric,
Dr Myhill's protocols and treatment,
hyperbaric oxygen,
aloe vera and ,
glycine,
ambien and various sleep drugs long term- just all got addicted or didn't work,
cannabis has now stopped working too. though it originally only helped sleep and pain.
A good number of drugs Dr Goldstein's protocol. The only drug on his protocol that did work was ketamine. Ketamine only helped pain, and I can't access in my country without claiming severe depression as my illness.
A couple of mast cell inhibitors did not work either. I can't get properly tested for MCAS where I live either. I had the tryptase test alone, which was negative.


After reading this thread, I think I too will stop trying new things after this Winter is through. I find it hard emotionally.
 
Shanti1

Shanti1

Administrator
Messages
3,513
Confession time :)
Things that didn't help or made me temporarily worse (mostly worse):
Most supplements (Vit E, NAC, glutathione, fish oil, mitochondrial support sups, digestive enzymes, probiotics, most polyphenols, gcMaf, sports enhancement supplements, nootropics, methyfolate, exogenous ketones, adaptogenic herbs, magnesium, melatonin, inosine, mushroom supplements and other immune sups, natural antivirals, D-ribose, malic acid, and more!)
SHINE protocol
IV ozone, IV saline
Low dose thyroid hormone, low dose cortisol, Testosterone/DHEA/Estrogen/progesterone, cerebroside (peptide)
LDN

For all the things I've tried that didn't work, I found a few that have really helped me, so I consider it worth suffering through those that didn't and will continue to try new therapies.

Things that help:
Valacyclovir, Oxymatrine, Short duration supplemental oxygen, Turmeric extract (Gaia Herbs), Andrographis, B12, salt, trigger point injections (muscle pain), antimicrobials for dysbiosis/candida, caffeine
 
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Strawberry

Strawberry

Senior Member
Messages
2,148
Location
Seattle, WA USA
sb4 said:
I have sinned so much.
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:lol::rofl:


hapl808 said:
It's the synergy that's important. Possibly your ratios of chocolate to donuts or bacon was off. The bacon offsets the chocolate receptors, so the balance is important. You need regular experimentation in order to find homeostasis. The donuts act as a binder. So if you have too much chocolate and bacon and start to feel sick, be sure to take enough donuts until you feel better. If you feel sicker after adding the donuts to the bacon and chocolate, that's just a healthy herxheimer reaction. No need to be concerned; that's how you know it's working.
Click to expand...

Now THAT is just so scientific. I’ll blame you when I look 9 months pregnant from the donuts though. But oooohhhhh, life will be good. For a short while!


My confession is exercising and hiking so much and thinking I could build up muscles and be normal again. Even after coming here and learning the truth, I still sinned. My final sin I even bragged about here. And have been punished for it ever since.

What helps? Hawaii. I start getting back to normal in just a week. Until I smell jet fuel, then it’s back to jello legs. I’d love to live there for a few months, but my kids no longer live there…
 
sometexan84

sometexan84

Senior Member
Messages
1,241
Valtrex didn't work.

I've only banked on 2 treatments. 1 was Valtrex. But when I thought this would work, that was towards the very beginning of my ME/CFS research.

I know a lot more now than I did then... Peginterferon Lambda is the other treatment I've banked on. Which I haven't yet started.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,612
Location
United Kingdom
oh let me see... ;p
  • Singlet Oxygen Machine (Kinetic Oxygen 6)
  • Vitamin B1 Thiamine High Dose
  • Methylation (seems to oddly work short term if defienct or depleted but long term not needed (if at a higher level of functioning) - I still take b12 as often as my body will let me))
  • Massive amounts of vitamin c - eeek!
  • q10 (not sure it ever did anything??)
  • MitoQ (crashed me)
  • C60 (crashed me)
  • Oxymatrine (took it for 7 weeks, made me a lot worse at the time, but I've recovered in the last 6 months sort of)
  • Lions mane (caused dysphoria and lack of sex drive long term)
  • Probiotics (all of them apart from Solaray 24 strain - which works wonderfully for me)
  • D-ribose
  • cbd Provocan - 600 - crashed me several days each time
  • Valtrex - terrible crash after about 2 weeks and extreme difficulty tolerating the drug
And many more I can't remember ha!
 
Woof!

Woof!

Senior Member
Messages
523
Strawberry said:
My confession is exercising and hiking so much and thinking I could build up muscles and be normal again. Even after coming here and learning the truth, I still sinned. My final sin I even bragged about here. And have been punished for it ever since.
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Ooooo...you hit one big-ass nail on the head here, for me. I remember when I first joined PR, there was a thread about pacing (to pace oneself or not to pace, that was the question...). And of course me (Dr. Moderation and Care) agreed that pacing was important. Shortly afterward (since it felt like a pretty good day to me), I went outside and stuffed brush and a bunch of small dead pine trunks into a wood chipper for 90 minutes. Wow! That felt great...until the next day. :pem::pem::pem: AAARGH! :aghhh::aghhh::aghhh: It's a lesson I will never learn, apparently, cuz' when I'm not fatigued to the gills or brain foggy until I drool, I WANT TO MOVE and DON'T LIKE being forced to sit on my ass just to prevent feeling lousy the next day.

In all fairness to my "too active" side, sitting around all day would NOT be good for me, either. I'm genetically predisposed to blood clots and have osteoporosis & bad posture... so... bottom line - I do what I can til I can't then I don't...in moderation.
 
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