Hello. I am 19 years old. I live in the UNMC hospital receiving treatment for an unusually complicated case of Stills disease, a hyper aggressive autoinflammatory disease. Here is my story.
A Catch-22 is an impossible, no-win situation where you cannot escape a problem because the conditions needed to solve it contradict or depend on each other.
This is where I find myself today.
Human leukocyte antigens (HLAs) are protein markers found on most cells in the body that help your immune system distinguish between your own healthy tissue and foreign invaders. Researchers have identified certain HLA/genetic profiles that may be associated with reactions to polysorbate 80. They think this phenomenon may occur in around 15% of Still’s disease cases, including mine, prompting the theory that a small subset of people with Still’s have an HLA/genetic profile that predisposes us to immune hypersensitivity to polysorbate 80.
Polysorbate 80 is a synthetic compound used as an emulsifier and stabilizer in foods, cosmetics, and pharmaceuticals. Some of the immunosuppressants I have been taking contain polysorbate 80.
The NIH (National Institutes of Health) theorizes that anakinra may be creating a Catch-22 scenario for me. The medication is needed to calm my underlying Still’s disease, but it may also be causing a delayed hyper-inflammatory reaction.
It’s a vicious cycle.
This completely rewrites the treatment plan. My rheumatology team is now experimenting with a new approach. They are going to ramp up my steroid dose while decreasing and weaning the anakinra. It is going to be extremely risky. Reducing the anakinra could send me into a severe Still’s flare and potentially macrophage activation syndrome.
I might land in the ICU again. I don’t know.
It would be nice to have a crystal ball—to just know what the answers are. But we don’t.
Do you know how you feel on the first day you get a virus? The aches, chills, fever, sore throat, fatigue, nausea, and general malaise? Much of that miserable feeling comes from your innate immune system releasing inflammatory proteins into your bloodstream to fight the infection.
In Still’s disease, that inflammatory process can become dysregulated and fail to shut itself off appropriately. Those of us afflicted can spend our days feeling like our bodies are constantly fighting an infection that isn’t there.
It is not fun.
I still have Still’s disease. The truly terrifying part of all of this is that polysorbate 80 is used in many medications. Finding something that can control the underlying Still’s while also avoiding polysorbate 80 is going to be a challenge.
My team wants to try this approach before moving forward with the bone marrow transplant option. A bone marrow transplant is already extremely risky, and because of the condition of my lungs, my team believes I would likely also need a lung transplant in order to survive the process.
So, for now, we are stepping into unknown territory and hoping this works.
Pictures, proof of my story. More to come as I edit. Check my profile for my full journey / story if you are interested. Stay safe out there.
.https://imgur.com/gallery/68XbXFO
Edit: A redditor posted this link, kuddos to them and thanks. It is extremely relevant. Note, I am not anti-vax, but I think the ingredient list needs to be cleaned up. https://thevaccinereaction.org/2016/01/polysorbate-80-a-risky-vaccine-ingredient/
Posted by bingobopboop
3 Comments
I’m sorry about what happened to you, and I believe your story
I have reason to believe, as do some other fringe actors in the medical field that vaccines cause autoimmune diseases
Especially true for the mRNA type because it turns your own cells into literal bioweapons against you
The implications behind this are quite devastating. Could humans have different HLA markers that interact with the chemicals in our foods, pharmaceuticals, drinks, vaccines, and ect? Could this be why chronic illness and cancer is on the rise? Could this be why the mental health crisis is higher? Polysorbate80 can cross the blood brain barrier when given in large amounts. Vaccines for example. Now I’m not anti vax by any means. But it does make me think. Perhaps chemicals are causing immune dysregulatation. Cancer is qualified as an immune dysregulation, as your immune system fails to recognize a mutation in its own cells. Autoimmune and autoinflammatory diseases are immune dysregulations, your immune system fails to recognize its host and tries to kill you.
OP, very sorry and I hope you get better!
The ultimate red-pill is the realization that vaxxes are deliberately harmful and vax-injuries are actually “good” for the economy because they vastly increase medical spending. P80 is bad of course, but so are numerous other vax-ingredients like aluminum and trace amounts of mercury, and all of the contaminated bio-ingredients, etc.
[Polysorbate 80: A Risky Vaccine Ingredient – The Vaccine Reaction](https://thevaccinereaction.org/2016/01/polysorbate-80-a-risky-vaccine-ingredient/)