4 years and consistently 20+lesions

[Sherrimarie1984]

Hey guys!

I am beyond excited to find a group of people to interact with and battle this amazing disease with lol

I've been battling for 4 years now and 1.5 years of proper doctors. I currently go to Mt Sanai and Sunnybrook monthly but due to our lovely government checklist it's been difficult to get me on proper drugs. They call me complicated 🤷‍♀️

About a year ago I almost lost my nose, hole in my cheek and other areas badly affected. I have days where the pain level is so bad from 100's of stones and crystals seeping from my body. The worst areas are behind knees, feet and hands. Also lungs have 30 lesions on them at this time. I'm honestly debating heading to the Mayo clinic lol

We have done genetic testing and it's currently being reviewed in the states but as of two weeks ago I've started a stronger drug.

Currently I take 26 pills a day and just curious of a lot of things lol

1. Is there anyone else that has been through this many lesions. The mouth ones and nose are the worst. How do you deal! I used to be stunning now my face is completely ripped apart

2. I do eat a lot of candy so cutting that out but is there something you guys find helps a lot food wise. I've been doing a lot of squash, blueberries and meats in coconut oil.

3.has anyone been on apo-azathioprine. I'm currently taking 2 of those, 4 cholcersine, and 6 prednisone a day and then fibro pills.

4.ive ordered Manuka honey as I find honeymed works best on lesions and stone withdrawal. Is there anything you guys use as a foot/hand detoxifier? I usually try to do natural. This is going to sound weird but while cooking with maple syrup and brown sugar my hands just started to withdraw some odd things 🙄

Lastly am I the only one that feels like is like a silly horror movie hahahaha. What is happening to our poor bodies.... right🤷‍♀️

[ColdNoodleSoup]

Sherri that sounds awful! I can’t imagine your face literally falling apart?! Is this Behcets or something worse??

I have not experienced that, but just wanted to send you support!! Good to hear you’re cutting out sugar - definitely worth experimenting with food as many here have shown success. Have you heard of the AIP protocol? It’s an intense elimination diet that I have never successfully implemented, but at this point it sounds like you may want t try everything you can!

Best of luck, we’re here to listen and support

(Also pssst I’m Canadian, too 😉)

[Curly1430]

Hi yes I take

Azathioprine

Cholchachine

Hydroxychloroquine

Pregabalin

Celecoxib and

Lansoprazole for settling the stomach

Iv just ordered myself vitamins D and sage capsules for the sweating hope you are ok txt any time just to ask more ok x