Went to hospital yesterday, mentioned “Kindling” to the doctor...ANND

Doctor: “I know nothing about that.” He was very nice but its alarming how out of touch the US medical system is compared to the U.K. on the Protracted Benzo Crisis. (I’m thinking of people like Don Killian and people on here who see no relief) I probably shouldn’t have gone.  I was literally discharged 30mims after getting there.  I mentioned flumazenil for PAWS and the doc said that i couldn’t have it because of high seizure risk.

 

At this point, all i know is that flumazenil could help.(recouple GABAa Receptors).

 

If it took 60 years for Benzo to get a black label, we will never see a “cure” or a proper solution.

Flumazenil is a weak anticonvulsive, it can't cause seizures except when used to flush the benzos out of your system. And even then, it's unlikely if infusion is slow enough. If you don't have benzos in your system, the feeling is usually pleasant.

Well...I guess I’m stuck with US doctors that will always say no to what might help. Unless something else is floating around.  I been thinking about that...maybe there has to be something out there that can undo the uncoupling.

Well...I guess I’m stuck with US doctors that will always say no to what might help. Unless something else is floating around.  I been thinking about that...maybe there has to be something out there that can undo the uncoupling.

The problem is BZD site uncoupling isn't the only source of symptoms. There are also glutamate issues, HPA dysregulation, etc. You have people who were feeling 100% thrown into worse than acute setbacks from working out, or drinking, or taking an antibiotic, or taking a steriod medication. Clearly, without long-term benzo use GABA_A receptors aren't going to suddenly downregulate, and BZD sites won't suddenly uncouple, so something else is at play.

They may call it ‘sensitisation’ not kindling.

 

That is how it is referred to on wiki etc.

I believe what's happening is an autoantibody response to our damaged cells causing symptoms. 

I agree with that Becks!

Glad you said it though and not me.

 

 

Becks and Adjusta, why do you think it's an autoantibody response?

 

If that were the case would we want to calm the immune system down? Surprisingly, I feel better when I take AHCC, an alpha and beta glucan. I also feel better when I am sick.

Becks and Adjusta, why do you think it's an autoantibody response?

 

If that were the case would we want to calm the immune system down? Surprisingly, I feel better when I take AHCC, an alpha and beta glucan. I also feel better when I am sick.

”Better when sick..”^^

I noticed that too.. -not so much this recent flu, but over prior years..

I ld hate to guess at why though..

I have a degree as a Med. Lab. Tech and studied the immune response and had courses in it.  I believe, in my case, that my cells are damaged and when my cells are damaged then an immune response will occur.  My body will consider these damaged cells as foreign invaders and illicit an immune response and create autoantibodies.  I had a positive ANA screening autoantibody test and then a Rheumatologist did tests and found a procoagulant antibody in my system.  My own body is attacking itself and trying to repair the damaged cells.  An immune response will cause inflammation, etc.  I was diagnosed with encephalitis on Jan. 22-brain inflammation.  I believe that is why I have bad head pressure and all these symptoms.  If you want to read about a lady on this forum who had tons of antibodies in her system read Hope4us's blog. 

I believe what's happening is an autoantibody response to our damaged cells causing symptoms.

 

There is no evidence for that. Benzo withdrawal is not an autoimmune disease.

I believe what's happening is an autoantibody response to our damaged cells causing symptoms.

 

There is no evidence for that. Benzo withdrawal is not an autoimmune disease.

Just to point out that I dont think Becs is talking about actual WD as defined, more her “somewhere downstream” damage, reaction, or response.. -Perhaps..??

 

Well...I guess I’m stuck with US doctors that will always say no to what might help. Unless something else is floating around.  I been thinking about that...maybe there has to be something out there that can undo the uncoupling.

The problem is BZD site uncoupling isn't the only source of symptoms. There are also glutamate issues, HPA dysregulation, etc. You have people who were feeling 100% thrown into worse than acute setbacks from working out, or drinking, or taking an antibiotic, or taking a steriod medication. Clearly, without long-term benzo use GABA_A receptors aren't going to suddenly downregulate, and BZD sites won't suddenly uncouple, so something else is at play.

 

Where did you go to get flumazenil treatment? How do I go about finding a doctor who would consider the treatment?  What part of the world do you live?

Yep.  I've been off the benzo's for 8 years now and I'm worse than ever.  I believe that they have caused permanent damage in me because I can feel it.

I believe what's happening is an autoantibody response to our damaged cells causing symptoms.

 

There is no evidence for that. Benzo withdrawal is not an autoimmune disease.

 

Maugham, I agree that benzo WD isn't autoimmune but maybe there is something downstream that happens when we are severely damaged by meds like this after some time?  I had a mainstream doctor kindly agree to run some labs for me and my c4a levels came back 9,000! very low VeGF and MSH, TGF-3500. Some of these are markers for neuroinflammation. My finger and toe pads are now constantly bright red (think Palmar Erythema but just the tips) like they are pooling with blood. I literally feel like I've been run over by the flu truck (minus fever) during waves- sensitive skin and teeth, chills, weakness, dysphoria, myalgia. I was very healthy before withdrawal. Eating paleo, HIT training, mountain biking. Now, if I try and exercise I get extremely ill after. Lyme tests come back negative (CDC approved-ones anyway). I'm not living in Mold. I don't know it's uncanny that such a low dose can devastate our systems like this.

TG, did you get an ANA screening test for autoantibodies?  I did and mine was high.

I believe what's happening is an autoantibody response to our damaged cells causing symptoms.

 

There is no evidence for that. Benzo withdrawal is not an autoimmune disease.

 

Maugham, I agree that benzo WD isn't autoimmune but maybe there is something downstream that happens when we are severely damaged by meds like this after some time?  I had a mainstream doctor kindly agree to run some labs for me and my c4a levels came back 9,000! very low VeGF and MSH, TGF-3500. Some of these are markers for neuroinflammation. My finger and toe pads are now constantly bright red (think Palmar Erythema but just the tips) like they are pooling with blood. I literally feel like I've been run over by the flu truck (minus fever) during waves- sensitive skin and teeth, chills, weakness, dysphoria, myalgia. I was very healthy before withdrawal. Eating paleo, HIT training, mountain biking. Now, if I try and exercise I get extremely ill after. Lyme tests come back negative (CDC approved-ones anyway). I'm not living in Mold. I don't know it's uncanny that such a low dose can devastate our systems like this.

 

I'm sorry for your suffering. The lab tests you mentioned are not specific for autoimmune disease. Many of the tests you mentioned (VEGF, TGF) are mostly useless in diagnosing anything. You're right, benzo withdrawal can cause all kinds of weird symptoms.

Becksblue- My ANA came back clean. My neurologist referred me to a rheumatologist after seeing my hands/fingers/toes. She did an extensive panel. Nothing. The dermatologist said it was "systemic" and not a skin disorder.

 

Maugham1- I've heard that too. My C4a levels have me mildly concerned. I'm not expecting to find a cause or cure other than time and a miracle though. Thank you. All good. I'll get there one day. Trying to do what my profile name says.