If you all recall Chris was a former member who had returned sometime in May/June and informed us that he was now symptom free?
He even had a blog that recommended a collagen cocktail and detailed his experiences. He hasn't logged into the website in a while.
I am no longer able to access his blog, does anyone have a way to access him or have the information stored somewhere?
i was thinking about this since some days and also wondering if somebody tried what he suggested and how is it going
I've tried cutting out all gluten and using the supplements he suggested. Since starting it I would say my dry mouth symptoms are not as bad.... No idea if it's related at all, but I take less pilocarpine a day and was not so miserable. However, recently I've begun to have dry eye symptoms. So I wonder if the disease just moved from one place to another.
What interesting timing; I just now had returned to the SW forums for the purpose of answering that very question, after I noticed that his blog (http://chris99999.blog.com/2016/05/14/my-sjogrens-recovery-journey/) is down.
I have been trying his protocol for the past two months. I haven't noticed any significant improvements, though my SS symptoms are reasonably manageable at this point. I already have all the ingredients to his cocktail, and plan to stick with it until either my supply runs out, or I start noticing improvements.
It has already happened in a past when the link to Chris blog didn't work. You can inform the forum admin about, and hopefully the link will be restored. In case of necessity you might want to contact Chris directly as I did, please PM me for his email. With regards to the protocol: Chris mentioned that he also didn't notice much improvement for the thirst 3 months, so, I do not expect it either at earlier stage. Personally, I'm planning to do exactly what WhatYouSjo does: try the protocol untill I'm out of supply, and see what will eventually happen. And we should not forget about anti-Candida diet and treatment, should we? It might be not less critical than healing the gut.
Unfortunately that particular blog site has been "down" for several days, with no indication as to why or a possible time of return. According to a website server status check, "Blog.com is DOWN for everyone. It is not just you. The server is not responding."
http://www.isitdownrightnow.com/blog.com.html
For future reference, informing forum administration here won't really help. We have no control over weblinks posted, except to edit out commercial sites and remove unacceptable or non-functioning ones, we can't restore them.
Hi.
I did not try Chris's protocol, but did start another with an Alternative Medicine Doc. I started near the end of May and am feeling much better. Much more energy, less pain (taking less pain med), have stopped my BP med & am tapering down off of the Prednisone. Still taking my Evoxac, Plaquenil,& Restasis.
Take Care.
SjoDry
SjoDry, it's really great to hear that your conditions are improving on this protocol! It could be another sign of possibility become Sj-free for others. What are the key elements of your protocol? Does it include anti-Candida and gut healing elements?
Seems like his blog is back up now.
Alek,
My Alternative Med Doc is treating me with a Proteolitic Enzyme Therapy Approach (http://nutritionreview.org/2013/04/controlling-inflammation-proteolytic-enzymes/). I am following a very strict food plan (at the beginning), that is: I am following the Autoimmune Paleo food plan(Sarah Ballantyne); have gone GF, Sugar-free; dairy-free and vinegar-free. I will follow this protocol for 100 days, then have my next phone consult with my doc (she is out of state). She explained that eventually, I can reintroduce some currently banned foods slowly to see my response to them.
I had been researching alternative med docs and thinking about trying this approach for quite awhile..but most docs charge so much and it is not covered by insurance. When I found this doc, I was thrilled. She charges only $50.00 for an hour long consult. Truthfully, I was feeling so horrible, I just didn't think I had anything to lose. (Oh yeah...I have also lost about 14lbs)..so I did lose that. Even if I never got any better than I am now...I have had some impressive gains from where I was functioning when I started. I now feel well enough to exercise and don't need daily energy drinks to get me through a day. Sleeping much better too. Truly, I wish I had done this a long time ago.
Take Care.
SjoDry
I've been taking the "collagen cocktail" once daily since May 22, and Plaquenil since May 7, so I can't tell which one is responsible for any of the improvements I've experienced. The word "cure" is not on the horizon, but I have noticed the following: my energy level is as near to normal as I need. Since it's excruciatingly hot and humid even in the Northeast, I have slowed down in the past few days, but I can certainly attend to my duties. I can garden, walk, stay awake all day without needing a nap, and even concentrate at the bridge table. My mouth is not as dry, but my eyes still sting and burn occasionally throughout the day, despite using Restates twice daily. Since I'm insanely vain, I've started to wear my contacts again, just for a few hours a day, but I have to use Systane Ultra first.
As I said in an earlier post, I am unable to cry, but sweat does pour down my face while I'm gardening in the heat. For months there was a visible redness in my neck near my submandibular glands, and it's almost gone. However, my glands still swell up whenever I drink or eat anything that is tart.
My recent blood tests revealed nothing amiss. The only marker that stands out is my platelet level which has been elevated consistently since my Sjogren's started. I've just bought a bottle of BioGanix Omega 3 fish oil and plan to start taking that.
Hi Sjodry- Know of any 1 pill which contains all those enzymes?
I already have supplements coming out of my ears.... ::)
And yes all, I too began wondering about Chris today!
Sharon,
I wish I did only have one pill. My Alternative doc took inventory of what supplements that I was on & told me which ones to stay on, which one to lose & also added a few that I was not on. What I can do, is take a look at the supplements I am on & let you know. My doc does have a few that are her proprietary blend (she uses herbs from the Rain Forest). I was wary at first..thinking oh no..she's just trying to sell me her line of stuff...but as I listened to several of her podcasts & got to know her better, and then started feeling better from the regimen that she prescribed, I realized that my fears were not necessary.
I will try to remember to take a look & write them down.
SjoDry
Thanks Sjodry, I think I consume more supplements than actual food at this point! ::)
I actually saved that entire blog post, but it's on my other computer, so I'll have to retrieve it later.
Sorry about the delay.
I wasn't sure where to upload the info to, so I found a website I'm going to try out, let me know if there are any issues with it, I can post it somewhere else: https://pste.eu/p/cYC.html
I've actually tried the L-glutamine since Chris suggested it but it made
my GI issues even WORSE!
Hmm... Sounds disappointing. I'm wondering if anyone has got any improvements on Chris protocol. I do it for 2 months, but cann't say there are signs of improvement yet. But in my case L-glutamine does not seem to be affecting my GI issues in a bad way.
sharon for me also impossible to take glutammine and also hyaluronic acid. my gerd becomes horrible
I wonder why it affects us negatively...
bec they are acid
I guess those that react positively to it are lacking in stomach acid.
Sharon, yes, I also think it relates somehow to stomach acid. Anyway, it does not seem that many of us do the protocol.
i tried hialuronic acid before knowing of chris protocol and i had troubles with stomach but this is not new for me, since decades i have gastritis, even without sjs
Greatly reducing gluten has helped me in a variety of ways.
I no longer take any GERD product daily. Once in awhile, I take 75 mg of Zantac as needed, which I think is perfectly reasonable.
My dry mouth is slightly better.
I have the odd advantage of getting a cbc often. Of most concern are my low platelets. Oddly, my platelets have gone up.
Don't know about the other stuff from Chris. I might re-check the post or the blog.
I saw a documentary by Dr. Michael Pollan called "Cooked" this weekend. He said originally bread had three ingredients. I think flour, salt and water. Today, bread often has 31 ingredients. Hmmmm. Never mind all the weirdness with GMOs. IMHO, probably not wise to mess around with Mother Nature. I do wonder if some of us who have noticed weirdness with bread...not Celiac or anything, but we do better when off of it or greatly reducing it, are reacting to some of the weird crxp in it. He interviewed a natural baker and the baker said that many if not most companies put in a fast acting Yeast that he believes is not good for many people. It was really interesting.
Yes Nomad, I do believe bread contain loads of unhealthy ingredients nowadays.
I've been strictly gluten-free for about a year now and it really helped the GI issues at first,
but since then I've had to cut out many more foods as my digestive issues returned and persisted.
So gluten is just one no-no on my now very long list of banned foods.
Quote from: Nomad on August 29, 2016, 09:43:43 AM
I do wonder if some of us who have noticed weirdness with bread...not Celiac or anything, but we do better when off of it or greatly reducing it, are reacting to some of the weird crxp in it. He interviewed a natural baker and the baker said that many if not most companies put in a fast acting Yeast that he believes is not good for many people.
Personally, for me, I was being affected by foods that had flour but not bread, so I think it's just the gluten itself.
Kind of funny, it took my boss a long time to realize that gluten is not the same thing as yeast =) He kept asking me if I could eat things like flatbread or crackers.