3 things you tried that made you WORSE!

[snowathlete]

for me,

1. Siberian Gingsing (though i maybe didnt give it enough time)

2. Gingko Bilboa (spelling?) though again i maybe didnt give it enough time.

3. Probiotics (high population ones) and i gave these about three months i think. No noticable difference.

 

[L'engle]

1) Modafinal/Provigil. Made me worse.

2) Cordyceps mushrooms. Total waste of money for me. Maybe the reishiis are better.

3) Armour Thyroid. Made adrenal fatigue worse.


And the one that isn't even deserving of a number but is on everyones' list: Ignoring symptoms and pushing through activity!

 

[Min]

just three?

cranial osteopathy - left me with a really painful neck & empty bank account

homeopathy - no difference

cognitive behaviour so-called 'therapy' with graded exercise so-clled 'therapy'- oh I could rant on for ages about how much worse this left me, bed bound for weeks & weeks, graded exercise should be banned for M.E. it's too dangerous

 

[Sing]

just three? I echo. There are so very many in fifteen years. I am not wanting to think about this, however, not only because it would recall how much money, energy, time and hope I have wasted on false cures and unhelpful remedies, but also because, for some individuals, a thing I might name would be a help.

 

[SaraM]

Medications - made me worse - I have never tried ABs or Antivirals
Herbs
Vit D- made me worse
Exercise

 

[Mij]

Perhaps the name of the thread should also include 3 things that made you WORSE? I think "didn't help" includes so many since we've all tried tons of 'stuff'.

Immune modulator make me worse and causes relapses that I never recovered from.

 

[snowathlete]

cognitive behaviour so-called 'therapy' with graded exercise so-clled 'therapy'- oh I could rant on for ages about how much worse this left me, bed bound for weeks & weeks, graded exercise should be banned for M.E. it's too dangerous

Snap. i forgot that one somehow.

Good point about the title Mij, i've asked for it to be changed.

 

[Enid]

1) Osteopathy

2) Exercise

3) "Socialising"

 

[heapsreal]

The question is wrong, only 3 things?????
I have used a crap load of things that havent helped, lol, probably a small fortune.
More failures then success thats for sure.

cheers!!!

 

[Jenny]

I've taken just about every supplement anyone's ever recommended for ME and none have helped. Most recently the 'Mitochondrial Resuscitation Protocol' recommended by the Breakspear for 6 months. There is so much contradictory and confusing info about supplements. Also, dosages must be very important but no-one really knows about this.

I could list many many other things I've taken and treatments I've tried that haven't helped.

As for things making me worse - I think LDN, which I took for 3 months at a very low dose, made my pain much worse and this worsening lasted for several months after I stopped it.

Jenny

 

[Ocean]

It's interesting and somewhat frustrating to see how everyone is so different. Things that some people swear by work horribly for others.

I haven't tried much so I don't have much to choose from for my three things:

-dietary changes (no gluten, no dairy, no coffee, organic diet, etc.)
-sleeping pills including antihistamines, benzos, and more
-sleep hygeine

 

[taniaaust1]

For every 15 things Ive tired.. only one has had a very slight affect on some symptom. I could do massive lists of things tried which failed.

Things which made me worst

"get out and have more fun"
" get fit"
antipsychotic drugs (seroquel, there was also another)
anti-depressants (Loven..SSRI, Citalopram )

 

[merylg]

Three of many things that didn't help:

1) Plaquenil - Major allergic reaction - Itchy red rash on arms & legs, facial flushing that hurt as deep as the cheekbones, joint swelling in hand.

2) Cymbalta - (relieved FM pain) but I nearly died when after a week or so on the drug, I contracted a severe & rapidly dehydrating ?viral gastroenteritis that caused me to collapse, needing hospitalization.

3) Bupropion (Zyban, Wellbutrin) - Muscle pains, Psychotic nightmares.

 

[Sing]

Okay, worse.

Amitryptiline, LDN, Paxil--those three I took only for very short tries because their effects were bad.

Long term antibiotics--for supposed Lyme which I don't think I have.

Well, maybe that is four.

 

[voner]

-LDN
-supplements (way too many to list)
-cortisol

And many many many more.

 

[Sing]

Modafinal/Provigil also made me worse. A meaningless buzz that failed to activate my whole system and left me more tired.

 

[justy]

No noticeable difference -
Fish oils
co q 10 ( but i still take it)
Homeopathy
oral Vit B12 (injecting now and thats much better!)

Made me worse-
Citalopram (complete nightmare)
Acetyl l carnitine -made me very jumpy
exercising within max heart rates a la Dr Klimas (3 minute per day at under 100 heart rate on an exercise bike caused a major crash after only 3 days that took me 2 months to recover from)
resting all the time, rather than good pacing.

Take care, Justy.

 

[snowathlete]

Amitryptiline, LDN, Paxil--those three I took only for very short tries because their effects were bad.

Amitryptiline isnt for everyone. But, i take it for sleep problems, and my sleep doctor told me it was particularly effective for people with ME/CFS. She warned me that i would get two weeks of terrible side-effects at the start but that then they would vanish and i would sleep, and she was right about all of it. Its changed my sleep problem completely, i now sleep fine and have no side effects. The first two weeks were hell though, but its worth giving it a full two weeks as they are known to cause dreadful effects at first. Also you dont need much for sleep, i take 20mg. For depression they often prescribe dosages in the hundreds of mg.

 

[Sing]

snow, what were the terrible effects you experienced the first two weeks? Maybe I jumped out of the Amitryptiline boat too quickly. (Iknow, hope springs eternal.) Sorry to briefly shift this thread--

 

[heapsreal]

The most horrible was increasing dose of effexor. Using just 75mg help some as in sick of being sick it helped, but my doc at the time said i needed to go to 225mg, well this just completely stopped my ability to sleep and my brain was like an engine revving, but worse was to come when i tried to lower the dose and come off. My brain was doing somersaults, i couldnt really think or do much other then lie in bed and felt like a camera flash going off in my brain every 15 seconds. This felt worse then any of my cfs stuff for sure.

I think the problem is its short 1/2 life and what i ended up doing was change to zoloft which has a longer 1/2 life until i stablized and then slowly tapered off the zoloft, amazing that i thought of this but 2 doctors couldnt help me with it and after it was over just a quick google i found this was how alot of people got off effexor, many used prozac but the two stupid docs i saw were no help.

cheers!!!