Which difficult to obtain treatment would you most like to try?

[Jesse2233]

Curious as to what people's wish list treatments are.

Ran out of room for Vistide

Reply with anything I'm missing...

 

[lafarfelue]

A full body transplant?

 

[lafarfelue]

No but seriously, I'd really like to try ketamine (regular ongoing IV form).

 

[Hajnalka]

I voted IVIG.

My second vote would have been saline. But I'd be already very grateful if I could at least try pain, sleep or POTS meds. Even those are impossible to get a prescription for from the doctors I've seen.

Of course I'm also excited about Rituximab and Cyclo but will wait until the studies are published next year.

Is Dextro-Naltrexone the same as LDN (just using it in lower doses)? Then that would be in my top 3 too.

Also would like to try antivirals. Ok I'll stop here, so much to try out there and no chance to do it, it's just maddening. I'm in the process of officially retiring in my 30ies and no doctor thinks that's concerning enough to let me try any treatment.

 

[Cheesus]

Is Dextro-Naltrexone the same as LDN (just using it in lower doses)? Then that would be in my top 3 too.

I believe dextro naltexone is the molecular mirror image of typical naltrexone, which is levo naltrexone.

 

[Hajnalka]

I believe dextro naltexone is the molecular mirror image of typical naltrexone, which is levo naltrexone.

Thanks for the explanation. Will read up on it.

 

[NelliePledge]

hard to say Jesse Im in the UK and only diagnosed 2 years ago on a steep learning curve, ive got my first session of HBOT on Thursday - that is fairly easily available in the UK through the MS oxygen centres, the rest I'm still trying to work out how to even begin to get access - I have a gut feeling anti virals would help me because I have the sore throat/swollen glands symptoms a lot and had chicken pox as an adult but I need to get myself a private doctor first if I want a snowflake's chance in hell of getting anything.

 

[*GG*]

Maybe Stem cells when there is more success, more science behind it?!

Not desperate enough to try Rituxamib, IVIG etc...I am at an ok state, don't want to "provoke" my immune system, and get worse!

Was on LDN since 2009, only been off it for about 1 year now.

GG

 

[Jesse2233]

Interesting choices, so far we have Ritux and IVIG in the lead with Suramin close behind

 

[Jesse2233]

I believe dextro naltexone is the molecular mirror image of typical naltrexone, which is levo naltrexone.

Yes, it only acts on the TLR w/o blocking the opioid receptor (like LDN). Would in theory allow for much higher dosages w/o the opioid blocking side effects and thus great microglia inhibition (if Dr Younger's model is correct).

 

[Mary]

Kutapressin/Nexavir - though it seems this is no longer available from what I can find ...

I like this thread - good question @Jesse2233!

 

[alex3619]

If Rituximab and later cyclophosphamide are shown to work then it will be difficult to get them for a while as the medical community and bureaucrats wake up. Then I would put them on my list, but not before we have good published data.

The ones I really want to try, and very hard to get hold of, are all the ones that are standardly used about a hundred years from now.

 

[Alvin2]

None of these because we don't know enough and i am loath to take huge risks with my already dying self.
So my answer is $5 million a year to OMF if i had the cash

 

[Learner1]

10 Pass ozone at any time.

Rituximab and possibly stem cell with more research.

 

[me/cfs 27931]

Surely this survey needs an "All of the above".

 

[IreneF]

Suramin sounds nasty. Interferon is nasty.

Rituximab did hardly anything for me.

Stem cell therapy is nearly all heat and no light.

Maybe ampligen, altho I don't know enough about it to make an informed choice.

 

[dreampop]

I kept waiting for an actemra update, but it's been 3 months since the user posted on PR. I just have a instinctual feeling about it. It's hard to reconcile Rituximab because of its price and the possibility that you would relapse after spending $80k. I could try it once, but to get it done continuously seems out of 99% of people's budgets. That and the phase II results weren't silver-bullet level. So it could be a huge spending, to get 40% better and relapse six months later. I need something that can change my life.

I have already taken IV-Saline which made almost no impact, a little reduced muscle aching. Suramin seems to rely on the idea that the illness switch is there. I don't doubt we experience hypo metabolism, but is this the disease? I don't know. The Autism results were unconvincing and too small to weigh into any decision making.

Rapamune is interesting, but the side effects are wholly intimidating. Xeljanz sounds interesting, but I'm not sure what the theoretical application is for it based on the evidence we have now.

It's a very depressing situation, I don't see any good answers, and how long until we have them - my life has already begun to pass me by. By the time we do have a treatment I wonder what will be left of me.

 

[nandixon]

I just voted for Actemra (tocilizumab) and basically explain why in a post I made a few minutes ago here.

 

[lansbergen]

None of them. I will stick to what I am doing now untill science has evolved enough.

 

[David's]

I do not post often but wanted to on this post because Jesse does a great job of researching different topics. I have been sick for 3.5 years. Mine started with a combination of Flu vac and back surgery. At the six month mark I decided to try Stem Cell Infusion hoping that it would be the answer. I had the Stem cells removed and grown in a lab and then flew to Mexico and had the Infusion. At the eight month mark I again flew to Mexico and had two subsequent procedures one of which was quite invasive. No doctor was guiding me just the desire to cure myself.
Stem cells were of no value and I recieved no benefit from the procedure.

Next I went to a so called functional doctor who upon my initial visit said that he could smell mold on me as soon as he entered the room. We had our home inspected by two well respected mold companies both saying there was no mold anywhere. The doctor had me do various mold pricks and my body was not reacting to any mold. It turns out that this doctor also owns an HBOT center so I proceeded to do 50 dives for 1.5 hours per just to satisfy myself. I had read all the articles that Jesse had referred to in an earlier post. It gave me something to do but was of no benefit to me . The dives are not cheap at $90 per hour.

At the one year mark I went back to the Neuro who was seeing me and explained that I was having various neurological issues and could he do another NCV test. He agreed and proceeded with the test and remarked that there were some strange results and refered me to a specialist. All along I believed that this was Autoimmune because almost every disease has Fatigue,numbness, etc as symptoms. (I had ruled out MS, Lupus, RA).
His belief was this was atypical CIDP( a form of GB). At this point my whole goal was to get IVIG and see if it made a difference. I had six IVIG infusions and not one benefit came from spending the whole day every three weeks getting this put into my body. I never did have CIDP as two other neuros did their tests which were normal.

I decided at the two year mark that I would try Rituxmab. (I still had the belief that this is autoimmune). I had four infusions which by the way were less severe than IVIG and decided to stop as I was seeing no benefit (good or bad) from putting my body through this. I had read all about the delayed response but most major responders responded before 30 weeks. My B cells were completely gone right after the first infusion. Interestly I thought that I would get more infections but that did not happen. If you look at Rituxmab there are trials going on for nearly every autoimmune condition and from what I read none have been that sucessfull.

My experience with the above make me question if this is truly an autoimmune condition. My hope is that it is not because there is nothing out there that will cure it. The only thing that might have a shot is HSCT but even that is being abandoned for conditions like RA. HSCT is a difficult procedure that is not to be taken lightly.

The thing that helped me the most was getting off all the drugs. I try to walk everyday even when I do not feel like doing it. I do not have OI so this is easier for me than those with OI.

Hope this post helps those that are waiting to try some of the less conservative therapy.