Author Topic: How I Recovered from Sjogren's - The Link to Blog  (Read 17641 times)

chrisr

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #15 on: May 15, 2016, 09:29:57 AM »
Hi Linda,

My Functional Medicine doctor has a DO degree, so he is a real medical doctor in training.  He just took additional training in nutrition and alternative medicine and got his ACAM certification.

irish

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #16 on: May 15, 2016, 09:50:48 AM »
chrisr, Let me point out that the info you posted was quite assertive. We have had posts on this forum over the years that were nontraditional to the point of being "weird". Many of these people have ended up having something to sell or something that was for their personal gain.

It took so long to present the blog and seemed at one point that we might not see the blog. Maybe it would have been advantageous to have presented the blog right off the bat. It would have answered questions up front and made it less controversial.

I don't think that your experiences are controversial now that the blog can be seen. Many of these things have been tried by many at one time or another. It is all in what works for each one of us and how we perceive our reactions to our disease and treatment. Sometimes it is not what the info is but how it is presented.

People are often wary of new people or information. It is hard to not be wary when peoples antennas go up. It is part of human nature. We will all go on from here because all is well that ends well. Thank you for your information and good luck in your qwest for health. Irish
« Last Edit: May 15, 2016, 11:31:11 AM by irish »

WhatYouSjo

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #17 on: May 15, 2016, 12:44:47 PM »
Chris, I just wanted to say thank you for the long and detailed write-up! As someone who has tried a variety of treatments, including a paleo diet, LDN, and helminthic therapy, I can relate to much of what you went through. I plan to explore the supplements that you credit with much of your success; I will certainly let you know how I fare.

I hope you don't mind that I added a post to my own blog linking to your entry. Let me know if you have any concerns.

I arrived to this thread a little late, but it looks like a critical post was removed. While I can't be sure who posted it, I have a strong suspicion. I received a long personal message from a member of this forum criticizing my blog and saying that I didn't have a 'correct' diagnosis and thus I shouldn't be writing. I just wanted to note that your diagnosis sounds accurate to me. As Linda noted, many rheumatologists will diagnosis Sjogren's Syndrome even when we aren't a perfect fit for the American-European Consensus Criteria. Indeed, the Sjogren's Syndrome foundation notes that "classification criteria is the strictest criteria available to prove a definitive diagnosis of Sj?gren?s for research purposes. Physicians usually diagnose SS for clinical purposes on a more individual, medically intuitive and broader basis." Dr. Robert Fox, one of the most respected SS researchers, has a good article on diagnostics where he notes that SS patients can and do have negative lip biopsies.

Again, thank you very much for your post, and congratulations on your success!
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

Dolly Dimples

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #18 on: May 15, 2016, 01:15:44 PM »
 Well done Chris,  I think it's certainly food for thought.
       Thank you , and good luck...     Dolly x

SjoDry

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #19 on: May 15, 2016, 02:04:58 PM »
Whatyousjo,

I have been receiving the same emails from the same person telling me I don't have Sjogren's and shouldn't be writing my blog also!

SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

chrisr

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #20 on: May 15, 2016, 06:52:42 PM »
WhatYouSjo,

Thanks for mentioning me in your blog!  I am very flattered.  Sounds like you have been on quite a journey yourself.  Best wishes to you, and e-mail me if you need any help.

BR-
Chris

mollie carey

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #21 on: May 15, 2016, 08:47:28 PM »
Chris,

First your blog is excellent. Your story is very inspiring. When I was first diagnosed with Lupus/Sjogrens and Hashimotos (via blood testing, Anti Ro, Anti La, ANA, Rheum Factor, Sed rate, Anemia, low c-3, low white count, and anti-thyroid antibodies). I went to a doctor who had me do this diet almost exactly. A Dr. John Green, from Oregon City, who now treats children with autism only, and has people flying from Europe and all over the world to help their child. He has been on the new here and in may articles about his approach to medicine.

I went on the diet, no gluten, organic only, no sugars, low carbs....he had me doing so many of the supplements you are speaking about. It was a very hard thing for me to do, it was a huge commitment, but as I did it, I was able to go off steroids, and plaquenil  (after 3-6 months) and it was like I was healed. I was like my younger self, and sadly, I kind of took in for granted again. After two years I slowly stopped some of the supplements (they were expensive and I thought I was better), and by the 3rd and 4th year I was sick all over again. I have never been able to go back on the program, instead I am on so many meds, and been sick with so much more, and each time I thought about restarting I put it off, for 14 years now.......

Your post has motivated me so much. Even thought I know what a huge commitment it was for me to do it before, I am going to start the cocktail and I am already eating gluten free, but will do the paleo diet also. I am taking this to my Chinese Medicine doctor this week. He has long proposed that my gut is the center of my heath issue, that I have to heal the gut to heal myself and after reading what you say I know he is right.

Thank you so much for sharing this.

I will let you know if I get improvement again, I am starting gradually, but I know my body was so helped before and I pray it can be again, at least to some level.

Thanks!
Mollie

irish

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #22 on: May 15, 2016, 11:25:55 PM »
The gut has the most amount of lymph tissue in the body and is really involved in just about every infection or autoimmune issue that comes up. It is strange to think of it this way but the medical community has known this for a long time but just the past few years are they expanding upon this.

The other thing is the brain/gut connection which is related to stress and other issues that directly affect the gut related to the nerve pathways. These medical issues are sure interesting but complicated. Irish

Bigleyj

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #23 on: May 16, 2016, 02:30:44 AM »
Hi Chris,

Your blog is great and good on you for being so disciplined.

I've seen this kind of thing with my own eyes:

My father's diabites, insulin injection dependant, totally gone when on whole/raw food.
My sister had a range of health issues that "dissapeared" while on paleo.

But it's difficult to resist certain foods even though we know darn well they are bad for us. 

Good on you Chris.

Jo.
Female, 44 Yrs, Victoria, Australia. 
Diagnosed SJS Nov 2014, diagnosed skin-only Lupus Dec 2014, overactive thyroid medicated since 2011.
 plaquenil, carbimazole, escitalopram (esipram), second generation oral saliwell stent, vitamin D.
Came off low dose Valium mid-2015 😀

singeanna

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #24 on: May 16, 2016, 05:45:11 AM »
Chris,
Could you please give us directions on how to make the cocktail with the measurement of each substance?

Lindabridge

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #25 on: May 16, 2016, 06:04:30 AM »
Chris,
I echo Singeanna's request-- how many tablespoons, teaspoons, etc. of each.

Thanks.

Linda
Relapsing Polychondritis,Secondary Sjogren's, Acid Reflux,Osteoporosis, Synthroid, Plaquenil, Losartan HCTZ, Acidophilus,Omega 3, D3, Calcium, B12, Restasis

chrisr

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #26 on: May 16, 2016, 06:47:41 AM »
L-Lysine Powder  - 1 tsp
Glycine Powder - 1tsp
L-Proline Powder - 1 tsp
L-Glutamine Powder - 1 tsp
Vit C Powder - 4 grams (two scoops in the brand i use)

Blend into a green smoothie with some fruit for sweetness.

I weigh 175 lbs so if you are little you might want to scale down a bit.

Nomad

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #27 on: May 16, 2016, 08:13:30 AM »
Chris...Thank you very much for posting this. I am supposed to be doing something else this moment, so I read it quickly, but book marked it and will definately read it again. One of my traditional docs is taking courses to also be a functional doctor, because he is sick and tired of not being able to help folks with their difficult problems...particularly things like AI issues. He recently gave me digestive enzymes and I admit, I haven't been taking them, but I will try them.

Quick note: I was shocked when my GP told me not too long ago, that my H2blocker might be making my mouth more dry, esp. at such a high dose. Then, shortly afterward, my hematologist, said it might be worsening my already low platelet count. I have ITP (low platelets) which is part of an AI disease. Anyway, PPIs sometimes give me headaches and their side effect profile bothers me. So, I thought I was fine taking Zantac (an H2 blocker). I had a fair amount of trouble with GERD. But given what these two docs said, I phased away from the Zantac in one day. Say what? I now simply drink water mixed with a little baking soda almost a few days a week and I'm a little strictor with my diet. On a rare occassion I take 75 mg. of Zantac, but esp. based on what I've read on your blog, I think I need to stop that. Perhaps I'm going in the wrong direction.  What shocked me though, is two of my docs, when push came to shove, didn't like the recommendation (for me) of my gastroenterologist regarding taking Zantac. And what also shocked me is that I got BETTER eliminating the Zantac. WT Heck?

Ive had freakish good luck with taking Oil of Oregano tablets for the prevention of colds and sinus infections. My Functional Doctor is giving it to patients left and right. And to my shock, my hematologist confided in me that she is using it. Yet, folks have trouble believing this sort of thing.

Out of all my docs, I would say my rheumatologist is the least open to new ideas...heck, he was the slowest to accept how important Vitamin D is to overall health and bone health many many years ago when studies were indicating how important it is for us.

I'm pseudo gluten free and most of the time eat in a healthy manner (see my tag line below). Judging from observation, I seem to be ok with a bite or two of bread now and again, but definately can't be stupid and eat a sandwhich, for example. (Which I did recently and feel like crud today...perhaps this is part of the problem).

I think I'm going to get two of the books you mentioned...the one on stomach acid and the other on AI ...the cause and the cure.

Thank you again! I hope you continue to do very well.



« Last Edit: May 16, 2016, 08:17:17 AM by Nomad »
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

Sharon

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #28 on: May 16, 2016, 11:25:05 AM »
Hi Chris, thanks for posting your very interesting and inspiring journey!
I would like to better understand why the collagen cocktail would benefit SJS?
Thanks!
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Lindabridge

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #29 on: May 16, 2016, 01:46:35 PM »
Chris,

How many times a day did you drink the cocktail? 
Relapsing Polychondritis,Secondary Sjogren's, Acid Reflux,Osteoporosis, Synthroid, Plaquenil, Losartan HCTZ, Acidophilus,Omega 3, D3, Calcium, B12, Restasis