ME and PEM recovery via Cyclophosphamide (personal story)

Hi there
Mods might need to help me here. I’m planning to post my ME recovery story (between 80-90% recovered still suffering myalgia and POTS but no PEM or fatigue) from the Norwegian cyclo protocol.
I did not do it in Norway and I do not plan on informing people how I did it for ethical reasons and also because I don’t want it to be seen as an encouragement for others to do what is a heavy drug that was on occasion difficult to handle.
I got ME from COVID so it’s LC.
What is useful for people to know and where should I post it?

 

I don't know where the right place is for that kind of story, but I would certainly be interested to read it.

And I wonder if you have been in contact with the Norwegian researchers? They might be interested to hear your story.

I really hope Daratumumab can show a similar effect with less nasty side effects.

Congratulations on your recovery!

 

It's great that you are feeling better! I am interested to hear your story as I am very interested in the Norwegian research. However, I think you're right to be concerned about people wanting to copy you and trying to get hold of the drug themselves. I would be worried that if there became a demand for it, somebody somewhere would start charging for it and I don't think anyone should be doing that before we have robust evidence to support it. There were people who spent $10,000s on rituximab before the phase 3 study came out and experienced no benefits and we don't want a repeat of that.

 

But there is no planned phase 3 trial for cyclophosphamide. So if you want “robust evidence” it may never happen.

 

Basically what I did is not illegal but definitely not something I want to promote. I had a doctor yes

 

Frankly it’s still important for people to hear about a success and remission. I can just withhold information so people can’t work out how to do it

 

I am
Half Norwegian and currently planning a trip to Bergen with my mum as she attended uni there. Will attempt to pop in and say hello!

 

I'm not up to date with the research. I'm going to have to look into why there are no plans for a phase 3 study. But yes, I would definitely want that before I tried a treatment as strong as this.

 

How long has it been now for you that you are feeling better?

I’ve no idea whether this is the sort of thing that only helps as long as you keep taking x or is if a round of treatment then you feel better?

do you have supervision of your health for side effects and improvements etc? Ie is this the sort of thing those doing the therapy provide ongoing care and monitoring with? And do your other physicians also know about this / although I know the idea of them keeping report on progress varies a lot ?


I feel your conundrum and it’s good you are putting so much thought into this

 

It’s a six month course where most responders in the six year data were still better.
I am not being monitored by a particular group but my GP is aware and I will be doing bladder check ups once a year for the rest of my life to make sure no cancer (<5% rate in those who took as much cyclo as me but I’m still taking it seriously because stage 1 has a 98% success rate so if it happens I will be on top of it)
I had bloods throughout. Once instance of anemia from the chemo fixed with iron infusion and then daily supplements.
I’m just not sure where to post my results, including my blood findings and scientific justification for the intervention on here @moderator
I think I will just not talk about how I got the therapy at all in order to not make is easy for someone to do this risky drug.

‘I have to say that whilst chemo was rough it was nothing compared to the living hell that is ME

 

What country are you in if you don't mind you asking?

 

I'd say there's no need to worry about where on the forum to post it. Mods are super helpful and will simply move your thread if they think there's a better place for it somewhere else than where you originally put it

 

UK

 

Thank you so much for your replies. You remind us how much we go through with your last line, because it sounds like a lot you've weathered. I'm really glad to hear that you are doing well and you sound like you know your stuff on the checks that are sensible.

I feel terrible that I'm not the right person to be able to help you with your question (but from my experience at least someone admitting that rather than guessing is what we need).

I'm really glad you are here and updating us either way

 

I am doing a big write up it’s on its way I just wanna put as much info in but also not have it be overwhelming for very sick people

 

@siobhanfirestone With any recovery stories, it's useful for me when they include details of how long they were sick, how severe they became (examples of things they could or couldn't do on a "normal" day), what symptoms they experienced when they overdid things at those levels, how they titrated the dose of whatever they took, how long it took before they noticed improvement, why they think it has plateaued if they are somewhat recovered but not completely, and what they mean by common acronyms or comorbidities (it seems lots of people have a different experience of what POTS or MCAS meant for them, for instance. Some people still call it POTS when it's not provoked by orthostatic challenge, and just refer to any tachycardia as POTS).

 

Step counts before and after treatment.

 

about 4-5000 before treatment now i can go up to 15-20k without PEM.