Intros Hello

[stu]

Hi all,

Ex-raver here who straightened himself out in the early noughties and then got diagnosed around 2015 with an extremely rare (1 in 100 million) hereditary auto-inflammatory condition.

Since then I have seen the NHS crumble and have been round the houses many times while suffering multiple side effects from the powerful medication I was prescribed to try to control my condition.

A few months ago i finally took the plunge and joined a clinic. It is changing my life in that finally I have a way to treat the most debilitating symptoms without the harmful side effects. It doesn’t stop the symptoms but they are much more bearable and I have now gone the longest time without pharmaceutical medication since I was first diagnosed and I am still going strong despite multiple flare ups.

 

[GrownHealth]

Welcome @stu and great news that you have finally found relief and managed to reduce or eradicate pharmaceuticals as this can only be a positive as I've witnessed the effects some of these drugs can have in my role as a husband/carer so this is really great news and lets hope the improvement continues

Ex-raver here also who straightened himself out in the early noughties after a wild decade.

 

[stu]

Great times from what I can remember

 

[GrownHealth]

Great times from what I can remember

Yep I have flashbacks triggered by certain tunes and great times where you just went with flow

 

[stu]

My condition is so rare when I was diagnosed my consultant showed me off to all his students (with my permission) and got to publish a paper on my diagnosis.

He is long gone having moved to a different hospital but it would be nice if one of my consultants could publish a paper on how much CBMP have helped me to cope with the symptoms of my condition to the point it barely bothers me now. Yes the traditional pharmaceuticals could also do that, but the side effects have so far included cataracts, and permanent hearing loss amongst other things (and I am a musician :-()

 

[stu]

Yep I have flashbacks triggered by certain tunes and great times where you just went with flow

Or even just hearing the original tune that they sampled

 

[GrownHealth]

My condition is so rare when I was diagnosed my consultant showed me off to all his students (with my permission) and got to publish a paper on my diagnosis.

He is long gone having moved to a different hospital but it would be nice if one of my consultants could publish a paper on how much CBMP have helped me to cope with the symptoms of my condition to the point it barely bothers me now. Yes the traditional pharmaceuticals could also do that, but the side effects have so far included cataracts, and permanent hearing loss amongst other things (and I am a musician :-()

It's absolutely crazy I feel, some of the side effects of some of these meds with permanent hearing loss as you mention and also the toll over years of accumulative taking of the medicines continually .
The Rheumatology department where my wife attends are all ears now on CBPM's after years of not being interested so progress but slow and it'd nice to see them prescribe the stuff one day.

 

[stu]

My dermatologist back in 2018 would have prescribed CBMP if she could but her hands were tied. She just told me “if it works then go for it”. I didn’t go for it then because unless you grow it yourself you really don’t know what you’re getting.

 

[cornucopia]

Hello & welcome, it’s brilliant that MC is helping you so much.
It feels like the Dr’s just guess sometimes at what will or won’t work and when you go back and explain the horrendous side effects you’ve experienced they just shrug it off and offer you the next tablets etc !!

 

[Dooby Doo]

Hi all,

Ex-raver here who straightened himself out in the early noughties and then got diagnosed around 2015 with an extremely rare (1 in 100 million) hereditary auto-inflammatory condition.

Since then I have seen the NHS crumble and have been round the houses many times while suffering multiple side effects from the powerful medication I was prescribed to try to control my condition.

A few months ago i finally took the plunge and joined a clinic. It is changing my life in that finally I have a way to treat the most debilitating symptoms without the harmful side effects. It doesn’t stop the symptoms but they are much more bearable and I have now gone the longest time without pharmaceutical medication since I was first diagnosed and I am still going strong despite multiple flare ups.

Welcome @stu

 

[Mary dee]

Welcome @stu