SOS: seeking lasting support

Hi friends,

I'm reaching out for support because I am extremely scared and alone in my medical illness.

I am in a really bad position– the same as I've read horror stories about from other poor souls on this forum– and I don't know how to get out of it. I have been getting sick again over the last several months, and now it's now tailspin, with my brain starting to go again over the last week. My history is so complicated it's too stressful to even begin to explain, and I have also learned through experience with misdiagnoses for years while abnormal test results stacked up NOT to try to subjectively report or "prove" my case to anyone. My hundreds of pages of records from the best doctors in the country speak for themselves. In a way, I was very lucky to prove beyond any doubt the existence of systemic infection in my body/CNS.

In short, I've been in treatment for Complex PTSD due to medical trauma over the last year at one of the best institutions in the world for it, but finally arrived at a place where I can no longer trust my mind due to the relapse of aggressive, systemic disease. I've kept my medical history to myself to avoid people's ridiculous interpretation that potentially deadly experiences as well as other crippling symptoms are all just "psychosomatic." You don't just wind up on half a dozen narcotics with half a dozen medical diagnoses (apart from infectious disease!)
receiving multiple rounds of stem cells after years of aggressive western and eastern medical treatments...

I'm still far, far away from how I sick was before, but I am struggling to manage symptoms daily, and with very limited resources. I am almost 34 and totally dependent on my parents, who have their own trauma due to my past illness and are unwilling to put any money towards medical treatment again. I love them and know that this denial stems from very deep pain and fear that they could never again afford the treatments I received in the past. But ultimately it is up to me to save my own like no matter what the challenges.

I am hoping for more than the amazing flood of support I've received on this forum, but rather could use some real guidance, talking about shared experience, or just a listening ear. I desperately want a community I belong in.

God bless you all. I never took full advantage of this community while I was sick for many reasons, but I want to now.

Sorry you are in this situation, Tabular.

I'm not sure what infections/other conditions you are dealing with. But if you think the downward slide is due to Lyme/Bart, you might be able to find herbs to take the edge off pretty cheaply. You can pick up bulk bags of a lot of herbs for $20-$40 that can last for months.

When I first got Lyme/Bart and could not get any diagnosis or treatment from traditional MD's, I learned about Buhner herbs and started Japanese Knotweed. Even at really low doses, the relief was as if, for the first time, I had found water to pour on the burning fire of my brain.

Tabular,

I feel bad that you literally sent an "SOS" but didn't get many replies. Perhaps people could provide more guidance if we had more details? It's hard to know how to give advice in a general way. For me, it sounds like you have tried many things (from what I recall from your last few posts) and I don't want to waste your time by suggesting things you've already tried or things that don't match your issues. Of course, I also understand how hard it can be to summarize years of illness and overlapping conditions!

I'm glad that your parents can support you in some ways, but I'm very sorry to hear that they are invalidating in other ways. It's generous of you to have empathy for them; I am sure that you're correct about their trauma, but ultimately I hope they do the work necessary to heal and support themselves so that they can be there for you again.

It sounds like your illness has been dismissed and/or relegated to the category of psychogenic. Is that right? Do you have any care providers who acknowledge other issues - infections, neurological dysfunction, the cell danger response, anything else that's more relevant? I'm a huge proponent of mind-body medicine, but everything needs to be approached holistically, and cramming someone into an incomplete psych diagnosis is infuriating!

Hope you are having a decent day!