Poll: Which Type of Treatment Has Worked Best For You?

[Jesse2233]

Edit: This poll now has a sequel Treatments That Have Not Helped

Hi everyone,

I was looking for a post like this but couldn't find one. If there's a pre-existing one please point me in that direction.

It'd be interesting to learn in a general way what's worked best. Obviously this will be somewhat skewed by a given treatment's popularity, availability, and newness.

Please respond if your diagnosis corresponds with the Canadian Consensus Criteria for CFS/ME

Let me know if I'm leaving any major categories off or using improper terms

Thanks!

Edit: it won't let me add anything new. If you have anything else to add (such as mold remediation or metal detox) feel free to post a reply

 

[TigerLilea]

You need the option of "Nothing has worked so far".

 

[brenda]

You also need the option - diet.

The autoimmune protocol has taken me from not functioning at all and feeling l could not survive, to functioning at a much higher level, having a life again, going on holiday, walking with a walking group etc and this despite untreated Lyme disease for nearly 20 years on top of pesticide and mercury poisoning.

 

[justy]

I voted IVIG, but actually I take low dose SCIG and it wasn't on the list. also B12 should have its own separate listing, not just under methylation as that's a whole other thing.

How about a box for 'other', a box for unable to get treatment, and a box for everything doesn't work or makes me worse. Olus one option for MCAS meds/antihistamines cos a fari few of us take them.

 

[me/cfs 27931]

Stimulants have worked for me short term. But with unacceptable long term health consequences.

Graded exercise has worked for me during remission. But during a relapse, graded exercise makes me much worse.

Valtrex has helped slow the decline of my health, but hasn't really resulted in much improvement. Oddly, Valtrex has apparently significantly improved my chronic sinusitis.

Psychotherapy helps a bit with dealing with the day to day reality of this disease. Then again, I've had too many psychiatrists who have misdiagnosed me, prescribed inappropriate treatments, and told me it was all in my head. CBT and mindfulness both have been worthless. Overall, psychiatric treatment has very significantly and permanently worsened my health and quality of life.

LDN continues to help with my various neuro symptoms and improves my sleep, but not as dramatically as when I started it a year ago.

I haven't been offered most of the items on your list, and they probably wouldn't be covered by insurance anyway.

 

[alex3619]

Where is pacing? Is probably the most used and most popular method to treat ME and CFS!

 

[TigerLilea]

"Have not been able to get treatment" is not the same as "No treatment has worked". I've been able to get treatment. It hasn't worked.

 

[helen1]

How about adding antimicrobial supplements. Antiviral supplements are only one type of antimicrobial.

 

[Snowdrop]

Just my opinion but I don't think that a Poll asking this question is all that useful unless it's tied to a context. In other words, how long have you been ill, what type of symptoms do you have and some sort of assessment of how to measure what is meant by 'worked for you'.

Was the person doing more than one therapy?

 

[Jesse2233]

Just my opinion but I don't think that a Poll asking this question is all that useful unless it's tied to a context. In other words, how long have you been ill, what type of symptoms do you have and some sort of assessment of how to measure what is meant by 'worked for you'.

Was the person doing more than one therapy?

Agreed. This is a quick and dirty way to visualize the more successful treatments in one place. A more robust survey system would better capture the context

 

[Neunistiva]

Maybe for every treatment there should be

1. Tried it, worked
2. Tried it, didn't work
3. Didn't try it

This was you are more visualising most common treatments rather than most successful (for example, a teatment that 20 people tried and 20 people got better on is more interesting than treatment that a million people tried and 30 got better)

 

[MeSci]

I think a lot of us have benefited (like me - for a couple of years anyway - maybe not currently!) from removing gluten/gliadin, and sometimes also avenin, from our diets.

 

[alex3619]

Tried it, didn't work

This might be very important. Figuring out what to try last is almost as good as figuring out what to try first.

 

[Jesse2233]

This might be very important. Figuring out what to try last is almost as good as figuring out what to try first.

Good idea!

 

[Jesse2233]

New poll on treatments that haven't helped here:

http://forums.phoenixrising.me/inde...tment-has-worked-best-for-you.49190/poll/edit

 

[Gingergrrl]

I voted for IVIG but in my case I would also need a category that said "Mast cell or MCAS medications" b/c without them I never would have lived to try the IVIG!

ETA: I just realized that I added something to your other poll of what didn't work vs. here for things that did work. So when I mentioned moving away from mold and mold treatments, for me I meant it as something that was helpful.

 

[Sushi]

Another editing thought: many of us take klonopin--not as an anti-anxiety medication but to move us from the seizure end of the continuum down in the direction of coma. In other words, for excitotoxicity rather than anxiety.

In atypical, you could also add GcMAF. My doctor prescribed Nexavir as an antiviral, though it does have other properties. I know--it is impossible to include everything!

 

[Seven7]

I see missing antibacterials( I have not done this ) and OI meds those are what has helped me the most

 

[MeSci]

New poll on treatments that haven't helped here:

http://forums.phoenixrising.me/inde...tment-has-worked-best-for-you.49190/poll/edit

That goes to a page that says "You do not have permission to view this page or perform this action."

 

[bertiedog]

From my point of view the most important thing I have got big benefit from is the correct thyroid medication along with adrenal meds. Following on from that has been herbal treatment for a year and half but cannot add either to this poll.

Pam