Sjogrens Recovery Update

[chrisr]

Hello everyone,

Just wanted to post an update on my Sjogren's recovery.  I am over 2 years now into a protocol that has put me in complete remission.  I have had the opportunity to talk with many of you suffering with Sjogren's about how I achieved remission and I hope to hear back from you on how you are doing.  I am now completely symptom free for the most part.  The only symptom that remains for me is slight dry mouth in the middle of the night which I believe is mostly due to my habit of mouth breathing in my sleep.  The last time I posted i got a lot of vemom from some folks on this board probably because the way I posted the message, but my my intention is only to try to share my experience and hopefully to help some other folks who are suffering greatly with this disease.  I posted a blog last year with all the details of my protocol which is basically a gut healing protocol combined with an alkalizing diet.  If you might be interested in trying it please let me know.  I hope in my heart i can help some of you feel better and let you know there is truly hope fro recovery.  Here is a link to my blog.  Hope everyone has had a great Easter and hope you will feel the blessings of health this year.  Here is a link to my blog.    http://www.whatyousjo.com/wp-content/uploads/2016/05/My-Sjogren%E2%80%99s-Recovery-Journey-_-My-Recovery-from-Sjogrens-Syndrome.pdf

BR-
Chris Repko

[Deb 27]

Wow, you had quite the journey with alternative treatments. Thank you for sharing your story.

Any evidence that this might work for people who've had this for a really long time?

Have you ever heard about Magnesium with maleic acid?

I also thought these treatments were quackery b/c I have worked in the medical field for over 30 years. But, after having the food sensitivity test and eliminating those foods that I reacted to, I have seen a huge, but slow difference. I can't say it's "cured" me but it has helped as much, if not more, than the plaquenil. I also noticed a big difference when I started taking an Omega-3 supplement and Vitamin D.  I think it's complicated and what works for one person, may not work for another.

[SjoGirl]

Hello ChrisR

Quite a journey! I've shared your post with my rheumatologist as I welcome his thoughts.

FYI I appear to be in remission as well, but am taking drugs such as Nexium and Evoxac. I am aware of the issues with these treatments and do worry about the LT effects. That said I tried the path that you have taken and it didn't resolve my issues. Guess each of us differs.

In any event, congratulations on your achievement, it's a great feeling to have your life back!

[Lotus1]

I've just read your blog.

Very glad you've helped yourself.

So, you no longer have dry eyes/mouth?

I'm desperate to help my dry eyes being an office worker.

Maybe I should try the collegan protocol.

I'm concentrating on alkalizing foods at present.

Lotus1

[WhatYouSjo]

Chris, I'm glad to hear that your remission has continued. I tried the collagen protocol for over 5 months, and didn't notice any improvements (mentioned in my blog). I believe my SS vector was a long-standing tooth infection, rather than the stomach issues that Chris mentioned. In fact, I don't really have any significant gastrointestinal symptoms, so I'm not surprised that the treatment didn't help.

[Jus]

Hi Chris,
Sounds like you have been on quite a considered journey-  thanks to the scientist in you!  and thank you for sharing.
Like you, I tried many of the avenues you did with some or none or worse effect.  The systemic candida medication also caused an allergic reaction for me, eye swollen and hives.  I am interested in the collagen supplements and may try these too.  I would like to go on a sugar free diet to improve gut flora but not sure how I will go with this.  Can you share any thoughts about how you dealt with cravings and restrictions on the diets?  My most disabling issue is my eyes are so sensitive that my eye lids close and blink a lot as a natural protection mechanism.  It would be amazing if I could find a way to improve this issue. 
Best wishes to all discovering their own remedies and wishing you strength in the ways to cope.
Jus

[alwaysimproving]

Chrisr, have you ever been tested for HTLV-1?

https://www.hindawi.com/journals/jir/2016/8402059/

"The Sj?gren syndrome has been diagnosed in patients with HTLV-1 associated myelopathy and dry mouth and dry eyes are documented in HTLV-1 carriers. However the diagnosis of Sj?gren syndrome in these subjects has been contested. "

"Our data indicates that patients with sicca syndrome associated with HTLV-1 do not have Sj?gren syndrome. However the increased production of TNF-α and IFN-γ in this group of patients may contribute to the pathogenesis of sicca syndrome associated with HTLV-1"