Search results

Someone asked about my genetic tests I did some massive panel before I made a decision about my care and I was positive for the genes that the Norwegians found correlate It helped guide my thinking towards autoimmune disease but wasn’t used for anything definitive - more as like a cluster of...

Just thought I would post an update. In remission still and travelled loads this year. POTS is mild/moderate, and I have permanent nerve damage in my feet from chemo - it doesn’t bother me though. Overall ME is in complete remission and I have some mild days where I more go for walks or...

Understood - i hope there is this level of analysis in the daratumumab study but I think as a series of case studies it’s still a proof of concept trial

Is it possible that natural variations in starting IgG would also have to play a factor in who was given a certain dose - that might be the same for Dara as well?

Maybe not cut it out but combine with something ? I really feel like they need to sort of track PEM better

as plasma cells grow back relatively quickly, like within a month or so, would that not put patients who did a smaller bit of chemo to no avail, hypothetically, at risk of having to do it all over again at whatever dose was found to be correct, and therefore increassing thier risk of side effects?

Oh i wouldnt expect these doctors to do anything else, but I chose myself what I wanted. Thats not going to be something everybody can and should do, and I have purposfully with-held information so that its impossible to know how I went about this, this is not me saying that this drug is key -...

yes hopefully, there are a bunch of drugs but 1) IgG lowering is hard and dangerous for reasons said in this forum. 2) The norwegians are trialing dara for this very reason 3) There are up coming things like CAR-T that are much better for classic autoimmune conditions but they often focus on b...

As said before i am invisioning a future where i get this again, so a non-cyclo drug is essential for me in the future. I hope dara passes, but regardless I eill find a way. If patients can get something as safe as dara and it has good efficacy....to have the remission I have now witohut having...

scepticism is fine and expected, but you cant have a randomsied placebo controlled trial with chemo, at all. trust me on this, when you spend days vomiting after. they use the ritux failed data to do the same thing that 36 questionnarire thing doesnt capture my sickness at all that was 100% PEM...

the treatments just before cyclo also hypothetically worked by reducing IgG, so if that was the case I believe it’s just more evidence for the theory. All I can say is it took to <4 IgG for me to get that therapeutic effect but after all treatments and before cyclo it was a healthy 8. I don’t...

Was she getting worse before that though That’s what people seem to miss here ….

I am thinking if its useful to be able to post things like the actual data, including IgG and other values and timelines and stuff but in a write up, but then again if i do that i feel it needs a researcher to do so and could potentially be published as a case study, not sure how to go bout that...

two important points that i think render this data sadly not very relevant 1) PEM of 12-72 hours was not diagnostic criteria. therefore in my experience it could be a bunch of things that make people "tired", not post viral disease. 2) Improvement is not remission, and remission as others have...

yes fiull exercise no PEM, i went to a friends house the other day and cycled 20 miles and rock climbed. i feel liberated from PEM, no issues at all from it

Thank you, we also did a lot of bloods to try and track what was going on in order to understand it, this is important because I now am mentally preparing for it to return at some point - whilst I plan a huge trip around Africa for when my immune system has recovered! To be clear I do NOT say...

I think I tried paxlovid in spring 2023f HBOT in summer 2023, SGB in winter 2023. No effect at all from any of these. This drug has been in a trial, my data has a correlation with lowering IgG resulting in remission - at the exact time of lowered IgG without me knowing this was the case till...

I had a feeling that any data presented would be met with a luke warm recentption here, even though there is enough data to present as a case study. I was not in a trial. I feel that this attitude is massievly letting down patients who are at a risk of suicide about 8 times higher than the...

about 5% of patients getter better with no intervention.

Yeah your right, I’m not discrediting the game changer that RTX was for certain autoimmune diseases either- but it’s clearly not the one for a disease that at least in my case matched significant improvement with a vast lowering of IgG (didn’t even know it was the case till I got my bloods about...