Autoimmune state

[[Ti...]]

Anyone in protracted diagnosed with an autoimmune disease that turned out to be just benzo WD? If diagnosed, did you treat it and how did you do with treatment? There is a diagnosis of drug induced lupus that is listed as temporary, which makes me wonder if these autoimmune states are reversible with time. If drug induced lupus is a possibility, then surely others under the autoimmune umbrella are as well? 
 

I’m so scared to start treatment, and so scared not to. Not sure what to do, so my plan is to keep watching my inflammatory markers for one year, but the rheumatologist ghosted me because I refused pharmaceutical treatment. I noticed on the last visit they were markedly improved (my blood tests), so why on earth would I embark on a treatment that has drug induced lupus and liver damage as a possible side effect? 
 

I truly think I can get better with time, positive coping, excercise, good diet and minimal stress. If I’ve learned anything this process it’s that the body has an innate and miraculous ability to heal itself. 
 

Note: Yesterday I had a pretty incredible window, sans the spine pain and tinnitus. I’m positive I’m healing mentally and physically and will come out of this healthier than before. I’m just not feeling this autoimmune state is a permanent thing and treating it will slow down or hinder my recovery. 

Also interesting: 2nd line treatment for pain after anti inflammatories is gabapentin and various antidepressants, I kid you not. 
 

Anyone? 

[[De...]]

Hey tinkered

 

I posted about how the gabaergic system affects the T cells and the immune system over another thread on chewing the fat, not a single reply which sucks, the thing is, our innate immune system is damaged due to the effects of a drug that affects the gabaergic system

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8136847/

 

Activation of GABA(A) receptors inhibits T cell proliferation, when your gabaergic system is "damaged" by a drug, It cant work properly inhibiting the immune response

 

 

I had an immune response and It damaged my nerves, the immune response is chronic and i had no diagnosis and proper treatment, only dismissal, the same happens every time and to everyone, psych drugs víctims, long covid víctims, and other conditions, anyone dealing with this would be very lucky to get an anto-immune decease diagnosis right at the beggining, because that would lead to proper targeted treatment and prevention of chronic damage

 

There are several stuff to treat auto-imune issues, better If knowning what do adress,  there is information about downsides of the drugs used for treatment of Auto-immunity, the doctors dont Tell the downsides to patients and often deny It, exactly like what's done with benzodiazepines and psychiatric drugs, denial and non informed conscent, 

 

 

If you have an auto-imune inflammatory decease you're better adressing It. 

 

The problem is, "its never the case" and the cause being benzodiazepines, even worst because If you claim "i cant take steroids anymore due to its effects onto the gabaergic system" or "i want artesunate in order of trying to reverse the consequences of benzodiazepines onto the gabaergic system " then you're completely crazy as such a thing doesnt exist, benzodiazepines doesnt harm the gaba receptors, you're delusional

 

Its never the case, for example,  i found a case of thyroid papilary carcinoma causing an anti-SOX1 antibodies-positive paraneoplastic neurological syndromes

I have papillary thyroid carcinoma, but Its "rare" for PTC to cause such a thing, that means, its never the case, It was the case in the case of this one at this paper, but thats the only case that will ever exist in Regards of PNS due to thyroid cancer, because "for you" its never the case.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10118322/

 

 

 

Im sure im dealing with auto-immunity, and already suffered nerve damages, now its only trying to recover from the damages, what most affected my levels of pain and constant immune mediated damage was sr9009, even 0.2 mg deeply affects pain, downside is that It cause major anxiety specially in higher doses, not so much at 0.2 mg but It does, better than suffering Constant pain and auto-imune mediated injury.

 

Sr9011 doesnt cause the same anxiety, but doensnt provide the same relief also, just a bit, and you feel kinda off , in non bodybuilding doses of 3 mg, maybe i need more since its selective to rev-erb b instead of affecting rev-erb a as sr9009, too soon to tell

 

Maybe by targeting the auto-imune response i will have more luck with stuff that seems to do something for the nerves, like HDACs that are showing to reverse some aspects of the neuropathic pain pathology

 

Imo If you're dealing with auto-immunity, and imo auto-immunity is a big issue on ourselves dealing with psychiatric drug mediated issues, then you're better adressing It, you have the internet and Bro sicence, and there are New stuff comming out that might be of help to the damages, that goes from HDACs like bromantane (1/2) artemisin or artesunate (HDAC 1,3,6) bempedoic acid (HDAC6)

 

Also andrógen receptor agonists, estrogen receptors selective agonists, farnesoid, retinoid and liver X receptors modulators which are still mostly not on the market, and that im not well versed to speak of, but might alleviate and reverse some aspects of the brain damage and nerve degeneration, OA and other issues caused by the psychiatric pestiscides and other auto-imune disorders 

 

Edited February 24 by [De...]

[[Ti...]]

Thank you @[De...] for all of that information. I will definitely take into consideration while I determine what direction to take. The first proposed treatment is sulfasalazine and folic acid. I filled the script but cannot bring myself to ingest even one pill. I made a spreadsheet of all the pharmaceuticals and treatments I’ve endured over decades of health issues. It’s probably not even near comprehensive and complete, and it’s so much.  They all made me worse in the long run. None of them cured me, not without losing body parts, and maybe even caused a cascade of health issues.  They all have long term effects. And frankly, I don’t think doctors and scientists even know how most of them work. 

My spine might be eating itself, but it might not. What if the pain is just amplified by WD and with time and self care will settle down on its own? I truly feel like I just want my body to age naturally at this point. I’m so tired and I’m only 54.
 

If, by the end of the year my markers are still showing an autoimmune cytokine storm inflammatory state I will accept the treatment plan, but after much research and deliberation with autoimmune patients that show favorable results. Migraine treatments almost destroyed me. Cancer treatment poisoned me and disabled me. Antibiotics for appendicitis saved my life. What if modern medicine is best served solely for emergencies? So I’ll have to determine if this is a true emergency or not. 
 

I do know that in another support group a lot of the people in protracted were testing positive for autoimmune states, which lines up with what you are saying. Food for thought.
 

I'm interested to hear if anyone in protracted that has embarked with Rx autoimmune treatment has improved healthwise. I’m so scared of a downward setback if I take anything. I’ve come so far after such immense suffering. It’s such a gamble. 

[[Fo...]]

Yes , me. 

Rnp antibodies 

Severe pain

I didn't take meds,  I too had autoimmune attack on my tissue when I would eat just about anything.  I was perfect before my cold turkey. I'm not taking meds,  I eat keto and aip and take supplements.  Folic acid isn'tgood for us by the way,  folate. 

[[Ti...]]

@[Fo...] thank you for responding.  What is AIP? I was far from perfect before CT, but no where the state I ended up in. Did they give you an actual diagnosis? Thx. 

[[Fo...]]

10 hours ago, [[T...] said:

@[Fo...] thank you for responding.  What is AIP? I was far from perfect before CT, but no where the state I ended up in. Did they give you an actual diagnosis? Thx. 

Connective tissue disease,  sicca syndrome, and a form of spondylitis.  Google aip diet. 

[[Ti...]]

@[Fo...] do your gums feel inflamed as well with the dry mouth? Teeth hurt along the gum line? 
 

I have also been diagnosed with a form of spondylitis. If I saw an orthopedic doctor, oh god, who knows at this point. I refuse to go to one. 

Edited March 4 by [Ti...]

[[Fo...]]

6 hours ago, [[T...] said:

@[Fo...] do your gums feel inflamed as well with the dry mouth? Teeth hurt along the gum line? 
 

I have also been diagnosed with a form of spondylitis. If I saw an orthopedic doctor, oh god, who knows at this point. I refuse to go to one. 

Yeah,  also nerve pain in the teeth.  This is all insane.

[[Ti...]]

1 hour ago, [[F...] said:

Yeah,  also nerve pain in the teeth.  This is all insane.

@[Fo...] I drink water ALL day and cannot hydrate. Any small chemical substance or rising of the sun and the trigeminal nerve to my teeth/gums is screaming in unison with the tinnitus in my ears. Yes, insane beyond words. 
 

Ever wonder what you did in a past life to deserve this? 

Edited March 4 by [Ti...]

[[Be...]]

I was diagnosed with APS Lupus when I was in tolerance w/d.  A few years ago, I was diagnosed with Lupus Encephalitis which explains the bad head pressure and throbbing in the back left side of my brain.

[[Fo...]]

6 hours ago, [[B...] said:

I was diagnosed with APS Lupus when I was in tolerance w/d.  A few years ago, I was diagnosed with Lupus Encephalitis which explains the bad head pressure and throbbing in the back left side of my brain.

I had this too, the pain and throbbing , I often felt I had vasculitis. I'm blown away and have ptsd from everything. 

 

Tinkered - no, I don't wonder what I did in a past time, the drug was made to keep people on it, like most, nothing to do with emotional or moral things.  I feel sorry for us though, it's so hard. I feel what I've been through was like a non stop spiraling nightmare.  I'm exhausted.

[[Ti...]]

@[Fo...] interesting about the AIP diet. I’m already doing so much of that out of necessity, I know what helps me to feel better and what makes me worse. So much lines up with my current food choices. Interesting about the eggs. I wonder if it matters that I get free range from a local farm. 
 

How far out are you? 

@[Be...] did you try any of the dmards or biologics for lupus and do you have the face butterfly rash? I know you mentioned in the past you take aspirin.
 

I’ve got the throbbing/pulsating to my heartbeat on both temples and have for years. It started at 6 years into benzos. I thought it was chronic migraines progressing, but have ascertained it was probably the benzos. It’s calmed, more muted now, but always there. Always. 

[[Fo...]]

5 hours ago, [[T...] said:

@[Fo...] interesting about the AIP diet. I’m already doing so much of that out of necessity, I know what helps me to feel better and what makes me worse. So much lines up with my current food choices. Interesting about the eggs. I wonder if it matters that I get free range from a local farm. 
 

How far out are you? 

@[Be...] did you try any of the dmards or biologics for lupus and do you have the face butterfly rash? I know you mentioned in the past you take aspirin.
 

I’ve got the throbbing/pulsating to my heartbeat on both temples and have for years. It started at 6 years into benzos. I thought it was chronic migraines progressing, but have ascertained it was probably the benzos. It’s calmed, more muted now, but always there. Always. 

2 years 

[[Sh...]]

@[Be...]what are your current symptoms and waht symptoms got better?

[[Be...]]

I have bad cognitive problems now too, so can't really remember.  I had vasculitis over a year ago in my legs and hands.  I was diagnosed with Lupus Encephalitis two years ago.  My brain is swollen inside my skull.  I guess that explains the head pressure and cognitive problems.  I also have urinary incontinence now too.  I'm mostly housebound, but go out when I can.  My new goal is to drive myself to go get a hair cut.

Edited March 6 by [Be...]

[[Ti...]]

On 06/03/2024 at 01:01, [[B...] said:

I have bad cognitive problems now too, so can't really remember.  I had vasculitis over a year ago in my legs and hands.  I was diagnosed with Lupus Encephalitis two years ago.  My brain is swollen inside my skull.  I guess that explains the head pressure and cognitive problems.  I also have urinary incontinence now too.  I'm mostly housebound, but go out when I can.  My new goal is to drive myself to go get a hair cut.

I hope you find the strength to get out and get yourself a haircut. I’m contemplating a pedicure in the near future, but something keeps holding me back.
 

My dream is to form a support aid group of prescribed harm survivors, chronic pain patients left by the wayside, and seniors in need. Strangely though, most if not all, forums don’t seem to want us to connect “in real life” “for our protection and safety.”  It’s a pipe dream, but maybe someday it will happen. Maybe like a wheels on meals type scenario. 
 

The Bible study ladies do this in my complex. So does AA/NA. I guess we are too broken to need help without policing from the powers that be. /sarcasm. So many desperate people relegated to online suffering without real time communication. Seems unnecessary.