@junkcrap50 That’s crazy to me that they won’t prescribe IVIG for your relative. Did they say why?
They just said they treat PANDAS but don't prescribe IVIG. Didn't really say why, but my guess is probably because it's too much work to get it approved for insurance. They would have to go back and forth with them showing medical necessity, which is a lot of paper work / office work. But I was shocked that these doctors' advertising and known to be PANDAS doctors but wouldn't give IVIG. I mean that's basically the only treatment. They're only use I guess is just make a diagnosis & try antibiotics & steroids for only immediately acute cases.
Family member is not a typical PANDAS case anyway as the PANDAS onset was long ago (person's functional but struggling and still messing up their life, and worsened from covid), so even if the doctor did prescribe it they probably wouldn't in our situation.
I am lucky in that I have a ton of resources at my disposal and I’m pretty sure that my parents would go to the end of the world to help me.
Yes. I can't imagine how some patients with little or no support cope. I don't think they survive very long.
We’ve been trying the psychiatry route for this since I was 17 and I have since become quite pigeon holed in terms of what I can tolerate because of this . I have pretty mild me/cfs but this has since turned more towards the moderate scale after doing a botched procedure with my doctor in January. I am about to lose everything and have had to move back home.
I'm sorry to hear that. I've been there too - drowning in life and had to move back home. Have you looked into, tried, or considered trying peptides? Just a random thought as that might be something more accessible and easier to try than the 3 treatments you listed.
In your situation, I would probably try to find one of the bigger name CFS doctors in the country & choose the one who does the most thorough & biggest testing panel at the beginning. Even things that don't seem applicable to you but is known to be found in ME/CFS. Because, saying well it's not really indicated in your situation will just piss time away. When you run out of things to test and try years later, you end up returning to trying things you could have done earlier. And why close off something that could possibly lead to some treatment. For instance, I couldn't get my CFS doctor, who I like and think is a good doctor, to do a spinal tap & test CSF even though my symptoms used to be entirely cognitive. To some treatment ideas he also says, "yeah, I've tried that in a few patients, and it didn't help that many." But that's not the point, I don't care if it fails 99times but works or helps 1x for me. So you have to find someone who is willing to try. And the best people for that are not necessarily a CFS doctor specialist. Rather I've observed the best doctors willing to try are those who care, curious, and have energy to find a solution.
Basically, treating ME/CFS is trial and erroring every test and treatment known to show something wrong in some ME/CFS cases and shown to help or cure some CFS patient. If there's an annedcote of one thing curing or impmroving a patient, it's on the list to try. Obviously, you'd prioritize treatments based on success and number of annecdotes and also take into account risk and chances of damage from the treatment. But you can't rule anything out if there's 1 case of it working. "Luck-based medicine" is what one person coined it.
