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Sjogrens Topics => Living With Sjogren's => Topic started by: chrisr on May 14, 2016, 12:47:22 PM

Title: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 14, 2016, 12:47:22 PM
Ok,

Here is the link to my blog which chronicles my Sjogren's Journey using a Functional Medicine Approach.  I sincerely hope it helps somebody else to achieve relief from their symptoms.

http://chris99999.blog.com/?p=5

BR-
Chris Repko
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: LucyD on May 14, 2016, 01:06:44 PM
Chris,

THANK YOU so much for chronicling your experience to elimination of symptoms and improved health.
You wrote it in such an organized manner, it is logical and easy to follow. I am very, very happy for you and I hope your good health and relief of symptoms continues! What a winding path it has been for you (as it has for many of us).

I am sure it took you quite some time to get this all down on paper in such logical blog.

It is very obvious that you did this only out of willingness to help others, and I just can't say thank you enough. Thank you. I am very sad you received anger from others when your only intention was to share your experience in the hope of helping others.

This might and might not help some of us, but it is sure worth a try and I am grateful.

LucyD


Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: irish on May 14, 2016, 01:28:34 PM
THis link did not work for me. Did anyone else have this problem? Lucy got it to work I see. Irish

I tried doing the input as per the link shown above and I got a page of articles on how to design a blog or start a blog. ????
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: irish on May 14, 2016, 01:59:32 PM
OK, I found it--had to do with cookies!!!

I read your article fairly fast and I do applaud you for your note taking through out your ordeal. THe one thing I will note is that so many things that did not work for you sort of are a common sense thing. It seems to me when we have to load ourselves down with certain foodstuffs, vitamins, minerals, etc it will come back to haunt us cause our bodies do know more than we do.

The info on the reflux is some old---adding acid to the diet sometimes helps some people. Vinegar has been used by many with good results. Also, the Nexium does shut off all the acid production and it can really give a person a gut ache. Some of these meds are worse than others. Also, the dryness is really apparent to me as I get dry from some of these meds.

Yes, there are reports of the organ damage and other stuff that has been out in public for the last year or so. Makes sense. I also think that if a doc says 2 pills a day I take one. I am not into always doing what docs say.

The processed foods are going to kill us all and most of us realize this. Our society is so used to eating fast and empty calories that are not good for us and are probably hurting us.

The probiotics are good for us but I have been saying for years that I can't eat yogurt or take the pills everyday because I get stomach upset and diarrhea from what I deem to be the overgrowth of the good bacteria. The use of antibiotics can cause us a world of hurt and at the same time there are several protocol out there that use the daily antibiotics. It is a double edged sword.

What I am saying is yes, we all have things that may help us and it is up to us to make the right choices and the educated choices when we pursue this avenue.

I have to add that when I got ill with my autoimmune diseases there was no yogurt on the market, the stomach acid meds had yet to be developed and there were very few antibiotics on the market. This was back in 1964 when I was in nurses training and there were not that many oral antibiotics out then. Also, I was seldom ill and didn't take antibiotics. Also, there was not much processed food on the market and MacDonalds had hardly shown up on the scene.There were Dairy Queens.

I also didn't take antibiotics or other meds for years cause meds were not given like they are now and there sure weren't that many of them back in those days. We just sort of lived off the land and led a pretty natural life compared to now.

All my symptoms were there for so many years and just escalated and you name it I had the symptoms which finally got diagnosed. I now have 5 autoimmune diseases and 2 immune deficiencies. I don't get too crazy with treatments as I am drug sensitive and I have just plodded on with all my ailments and managed to make it through until age 60 when things really escalated.

So, I think that all your trials are of interest and can give some people some ideas on things to try but I also think that over doing some of these diets and trials can sometimes be hard on our system. Some times of healing may be interspersed with times of breakthrough symptoms. Time will tell. Good luck and thank you. Irish

My side of the story regarding a disease that has many causes.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SjoDry on May 14, 2016, 03:51:23 PM
Wow! Chris,

That was/is definitely a journey. You did a nice job of explaining it. I do think I will need to read it a few times with some research time in between your approaches to fully comprehend it all.

I applaud your strength in being so stringent in your efforts at trying these different diet approaches. That has never been my strong suit..sticking to a diet. Perhaps if I were seeing a functional medicine doc ..I would be motivated and financially invested in giving it my best efforts.

I did order the stomach acid book. It had some good reviews on Amazon. I will also follow some of the links to check those out .

I appreciate that you wrote this and shared it. I found it helpful.
I wish you continued success in feeling the best that you can.

Take care.
SjoDry
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Wal on May 14, 2016, 04:18:31 PM
Wow! Thank you so much for taking the time to blog what you did. I have to admit there's a LOT to digest. However, there were so many things that you experienced that I definitely identify with...not just physically but emotionally. Thank you again for taking the time to share this with us!
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: kimberly64 on May 14, 2016, 04:31:12 PM
Thank you for posting this !  This is what this board is for sharing experiences even if what works for some may not work for all but everyone should be treated with respect when they give their experience!
Kim
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on May 14, 2016, 05:35:00 PM
thanks so much for posting. i read many times what u wrote and i would love to start to try but im really sad because i  have  terrible gastritis and   i tried collagen and aminoacids and had horrible pain. i think that here in europe we have less junk food , i never went to a mc donald and im in a strict diet for gastritis and diverticulosis  and i also  take ppi but this mean that paleo for me seems to be quite difficult. there are days when i can eat just potatoes and rice...but ill try your suggestions bec im sure that gut is responsable of many deseases.ciao from italy
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: LucyD on May 14, 2016, 06:27:50 PM
Just read some of posts by others and have to agree with Wal, "many things that you experienced that I definitely identify with...not just physically but emotionally."

So I just had to reach out and say I really identified with the part where you said, "...so I was swirling in the perfect shoot storm of hopelessness." Love it. I am there quite often. It helps in some weird way.
:-)

Best to you. Thanks again.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: singeanna on May 14, 2016, 06:49:49 PM
Thank you! Reading your blog has inspired me!!
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 14, 2016, 11:01:25 PM
Bluegardenia,

You might try juicing cabbage for your gastritis.  Hannah Yoseph mentions it in her book.   It cures stomach ulcers in a matter of days, and since gastritis is just inflammation of the stomach it should work for that too I would think. 

Look here: 

naturalnews.com/027454_cabbage_ulcers.html
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Linda196 on May 15, 2016, 04:11:19 AM
Please let's keep this thread civil, no need for name calling.

Many established rheumatologists and immunologists willingly diagnose Sjogren's without antibodies or with inconclusive biopsies. The only time it isn't a valid diagnosis is if the patient is being enrolled in a scientific study in which, to allow a very level playing field and a method to accurately evaluate response. To accommodate this level exactness in basic diagnosis, the American College of Rheumatology established a new universal regulating criteria in 2012. This simply means that approximately 30% of patients with Sjogren's are excluded for studies, according to a research rheumatologist in Canada. (passed along in personal conversation, so I can't name him, but if I find a printed reference to his comment, I'll post it).
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: kimberly64 on May 15, 2016, 04:39:36 AM
I believe this gentleman said in his blog his parotid gland biopsy was positive.  Are we really going to be hateful to a fellow sufferer on a minor detail?  It appauls me how this person has been treated simply for trying to help others with their experience. 
Kim 
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on May 15, 2016, 06:41:47 AM
thanks chris, i have hiatal hernia and diverticulosis with some attacks of diverticulitis. cabbage is forbidden for me even in juice,  my stomach and gut becomes like a ballon with cabbage ,i could fly directly to hospital but thanks anyway for  kindly answering!!!!
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Lindabridge on May 15, 2016, 06:54:31 AM
Chris,

I'm so impressed with your detailed story of your struggle to fight Sjogren's.  It wasn't easy, and it required an enormous amount of self-discipline, self-examination, and perserverance.  Hats off to you, young man! 

It's encouraging to hear that it took Plaquenil three months to kick in. This gives me incentive to continue with it and to be  patient. I went to my first Sjogren's support group yesterday, and was disheartened to hear the woman sitting next to me claim that after only one week on Plaquenil, her symptoms had disappeared.  Then she later admitted that she didn't have any of the classic symptoms at all-- no dry eye, dry mouth, or fatigue.  Perhaps she was in the wrong group!

Ironically, Hannah Joseph's book is the first one on Sjogren's that I ordered.  At first I was put off by her diagrams, charts, arrows, etc., but I will go over some of the chapters now that you have simplified it. 

Like you, I've  had no success with Restasis which i've been taking religiously since March 13.  So, I'm going to explore other options, like the punctual plugs, and even some of that collagen cocktail.  Anything that has "cocktail" in it sounds appealing to me!

Regarding whether someone is an alternative practitioner or not, I think it's important to me to find a qualified medical professional who has had sound training, but who is willing to think outside the box when it comes to his or her patients who are not responding to traditional medicines.  That kind of person is hard to find. 

Let's continue to support each other in our quest for good health. 
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr 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.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: irish 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
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: WhatYouSjo 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 (http://www.whatyousjo.com/2016/05/a-sjogrens-patient-finds-success-with-diet-and-collagens/) 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 (https://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria) 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 (http://www.medscape.com/viewarticle/848782) 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!
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Dolly Dimples 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
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SjoDry 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
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr 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
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: mollie carey 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
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: irish 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
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Bigleyj 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.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: singeanna 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?
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Lindabridge on May 16, 2016, 06:04:30 AM
Chris,
I echo Singeanna's request-- how many tablespoons, teaspoons, etc. of each.

Thanks.

Linda
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr 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.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Nomad 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.



Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon 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!
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Lindabridge on May 16, 2016, 01:46:35 PM
Chris,

How many times a day did you drink the cocktail? 
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 16, 2016, 02:24:48 PM
Sharon,

The amino acids and vit C are part of the Linus Pauling protocol.  You can google it to see the theory behind.  Basically you are providing the building blocks to repair damaged tissue in your body.

Lindabridge

I take the cocktail once per day.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon on May 16, 2016, 02:42:48 PM
Thanks Chris, so basically the idea is to put a stop to the AI attack by healing your gut
and then to repair the damage already done from the illness with the collagen cocktail?
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 16, 2016, 03:06:22 PM
Yes,

I think the collagen accelerates the healing of the gut, as well as the joints and other damaged tissues.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on May 16, 2016, 03:25:09 PM
chris, sorry for disturbing with more questions.
my problem are the amino acids bec with gastritis i really cannot tolerate them. so i should heal first my gastritis and then take them?
thanks
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon on May 16, 2016, 03:47:53 PM
Thanks Chris, can you explain why the cocktail ingredients need to be added to a green smoothie?
Wouldn't it suffice to take the 4 powder supplements in capsule form?
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 16, 2016, 04:41:07 PM
Not sure, Hannahs book recommended mixing it with juiced apples.  I changed it up.   Capsules would be much more expensive.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon on May 16, 2016, 05:27:14 PM
I only come across the capsules...where can you find them in powder form?
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: singeanna on May 16, 2016, 05:44:30 PM
Sharon, Amazon has free form amino acids in powder form. A brand called "Bulk Supplements" sells
them but I am sure there are many others.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 16, 2016, 07:05:28 PM
iHerb, Swansons, VitaminShoppe to name a few.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon on May 17, 2016, 03:28:35 AM
Thanks guys, I now see that all I needed to do was to add the word "powder" to my searches....
Any recommended brands Chris?
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: WhatYouSjo on May 17, 2016, 07:15:49 AM
I ended up mostly ordering the Bulk Supplements brand. Seemed like the best price, and had good reviews. I've had good luck with NOW brand supplements in the past, but they were a little pricier.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 17, 2016, 07:28:57 AM
I will post a photo of the supplements I use on my blog soon.  It doesn't matter which brand you use as long as it is a reputable source.  Also don't forget the magnesium, calcium and zinc.  They are important to keep your food intake alkaline.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon on May 17, 2016, 07:58:44 AM
Thanks guys,
I'm already taking magnesium citrate and zinc supplements.
My calcium blood levels are already quite high.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: RichmondGuy78 on May 18, 2016, 12:26:05 PM
Chris, thanks so much for posting your update and blog. I'm happy you feel so well recovered. Your story is very inspirational and just what I need to hear right now.

You might remember corresponding with me about a year ago? Since the time we spoke, I have followed the Paleo diet (with some success), but I have not achieved remission. I am just starting the GAPS diet and hope all that bone broth will heal my gut. Depending on how I progress, I may add in the collagen cocktail and the other supplements you mention (Zinc, Calcium, Magnesium). Do you think bone broth could be as healing as the collagen cocktail (or even more so)? By the way, do you still do bone broth?

Anyway, congratulations on successfully recovering your health.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 18, 2016, 02:32:16 PM
Bone broth didn't do the job for me, neither did the GAPs diet.  I should have added the GAPs diet to my healing journey blog.  Left that one out.  I think the collagen cocktail is probably what helped me the most or the anti-candida diet.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Lindabridge on May 18, 2016, 06:05:30 PM
Chris,

The first installment of your protocol arrived today-- L-Glutamine and the probiotic.  I will hold off on the cocktail until all the ingredients arrive, but I took the probiotic with dinner. 

Will update you accordingly. 

Linda
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SunshineDaydream on May 18, 2016, 06:52:23 PM
Thank you for posting this interesting information, Chris.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: irish on May 18, 2016, 10:09:08 PM
Just wanted people to be aware that taking these minerals can sometimes cause some issues. High levels of calcium can interfere with the heart rhythm and be potentially fatal. Magnesium can be dangerous for people with Myasthenia gravis to take as it can cause increased weakness.

It really is prudent to check with doctors before starting these OTC meds that are natural for our body. We can get into big trouble. I just read an article about the number of serious side effects and deaths caused by OTC meds that people take without medical supervision. Good luck--just want people to be safe. Thanks. Irish
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on May 19, 2016, 05:31:34 AM
I totally agree with Irish on checking with your doctor first before trying any natural healing protocol.  Also keep in mind that I have my CMP blood work done every 6 months so I can see if my calcium levels are OK.  So far my blood work has been perfect.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Lindabridge on May 19, 2016, 09:36:55 AM
Just as Chris modified Hannah Joseph's protocol so that it fit his own needs, we can do the same.  I'm already taking a CalMagZinc supplement, and have done so for years because of my low bone density. My doctors have told me it's perfectly safe for me. The Vitamin C will also help me, and I've taken it in the past with no side effects.  Years ago, I took some of these amino acids, but not all of them, and the worst thing that happened to me was that NOTHING HAPPENED.  This particular probiotic is new to me, but so far I have not imploded or exploded.  We will see.  I haven't had any rashes in two days which is a good sign.

But, I agree  that if you have a complicated medical situation, you should definitely consult your doctor first. 
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon on May 19, 2016, 01:16:50 PM
Concerning the Vitamin C....isn't 4g a bit much?  :o
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SabbraCadabra on May 27, 2016, 05:56:56 AM
There's a lot of truth to this. I've had LPR for as long as I've had Sjogren's symptoms (probably not a coincidence), and being on PPIs for about a month did much more harm than good. Lower carb intake (neo-paleo) and higher acid production really does work miracles. I wasn't able to find HCL when I checked at the store, so I just tried swigging lemon juice instead, and now I always make sure I have it in stock.I feel like finding ways to produce more saliva also helps a little, as it has lots of digestive enzymes in it.

I also have ASD, which is highly co-morbid with leaky gut, and began to have allergic reactions to gluten. I was doing some research on leaky gut, probiotics, and candida, but your research goes a bit beyond what I was able to find. I guess it's not surprising that all of this stuff ties together.

Kind of disappointing to see the length of time it takes to see improvements, but any hope is better than no hope. I'm going to have to dedicate myself to some of these steps.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on May 27, 2016, 07:44:37 AM
sorry to disturb, im probably stupid but i cannot find any name in chris blog for the probiotic...
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: hopeforall on May 27, 2016, 11:00:57 PM
@Bluegardenia:
Chris has uploaded a photo incase you get the same brand in Europe.

swansonvitamins.com/swanson-probiotics-ultimate-probiotic-formula-3-pack-3-30-ct-bottles-veg-drcaps?otherSize=SWL024

Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on May 28, 2016, 07:57:39 AM
thanks, unfortunately we dont have it here... i take VSL3 that seems a good one with 450 miliards bacteria but i wanted to follow chris  suggestions
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sooki on May 28, 2016, 08:05:10 AM
I just finished skimming through Yoseph's book.  I had a hard time reading through the cartoonish, pseudoscience format and language, but in the end, I think she's saying that in AI, the immune system is reacting to a class of microorganisms which include mycoplasmas, H. pylori, and ureaplasma.  These all grow better in acidic environments. So, much of the remedy involves eating in a way that creates an alkaline environment. (This is different from eating nonacidic foods).    The worst offenders are sugar and grains.  Besides the more or less paleo food list, she recommends, cabbage juice, probiotics, and alma-seltzer (aspirin, sodium bicarb, and anhydrous citric acid(?) ), and alkaline minerals, and bits of raw onions and tomatoes.  The next important step is to recreate collagen (amino acids, etc.).

]While I was turned off by the manner of the book, I resonated with the idea that my immune system is responding to something real.  That there is an underlying infection, by bugs with mondo abilities to hide and thrive, which my trusty immune system is trying to eradicate through drastic means.  The alkaline thing sounded more reasonable.  And as my body goes through aging (spellcheck wants to make that raging), and arthritis, and hugely sagging skin, the idea of building up collagen is also appealing.  None of the regimen, other than the amino acids and vit C which I'll start a little at a time, are very different from what I'm already doing.  (Instead of Alka Seltzer, I might try a baby aspirin and a small amount of ] baking soda).

I'm interested in hearing what other people's experiences are over time.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on May 28, 2016, 11:07:43 AM
Tomatoes are nightshades so from what i understood they are not good....well i think that we have to try and try. eliminating all grains will be really difficult for an italian... and if i dont eat pasta my gut is blocked
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SjoGirl on May 29, 2016, 05:17:13 PM
As noted, one might check on use of supplements with your doctors, particularly if you work with an osteopath (they typically have a more open mind).

Supplements can and do interact with drugs and some vitamins taken in very large doses can be toxic or at the least cause some significant discomfort.

I would agree that cutting back on sugar is helpful as was cutting out gluten for me.

Bluegardenia, gluten free pastas have come a long way. There are corn based, quinoa based, black bean and many others that are quite tasty.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SabbraCadabra on May 29, 2016, 11:56:57 PM
Gluten-free grains are still grains though, are they not?
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on May 30, 2016, 06:53:45 AM
thanks, i know sjo girl, but the gluten free have not the same benefits for my very personal gut...
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SjoGirl on May 30, 2016, 03:51:36 PM
Yes a gluten free grain is a grain. Some choose to go without grains, I tried, but was hungry all the time.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Sharon on May 31, 2016, 04:05:12 AM
From my experience and all I've read, oatmeal is an anti-inflammatory grain
and has really calmed my intestinal inflammation.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Lindabridge on May 31, 2016, 03:38:41 PM
Perhaps this is a bit premature to respond to the forum, but I have been ingesting the "protocol" for ten days.  I've also been on Plaquenil for three and a half weeks, so I'm not sure which improvements are related to either.  I have a feeling that most of it is related to Plaquenil.

My fatigue is greatly reduced.  I am not 100% what I used to be, but I'm sure much better than five months ago.  I actually drove from Vermont to New York City today which is a five-hour drive, including stops for lunch and dog walking.  At no time was I ever in brain fog or "swirl" as I used to call it.  In fact, for the past several months, my bridge partners ( hence my user name Lindabridge), wondered what was wrong with me.  For those who are duplicate bridge players, you know that when you are the dummy, you are not expected or permitted to speak, but as my partners said, "you shouldn't be in a coma."  That's what was happening to me every afternoon right after lunch. 

Anyway, my peripheral neuropathy in my fingers has disappeared.  I'm not sure whether this is due to Plaquenil or the protocol, or to  Vitamin D, or Vitamin B12. My rheumy ordered a slew of blood tests, and I was low in Vitamin D. I knew this years ago, and sort of got lazy about taking it the past few months because of all the other meds I was taking.  I also read that if you are taking  acid-reducing meds, they can interfere with your body's ability to metabolize Vitamin B12 and/or D, and this can cause peripheral neuropathy.  So, I am making sure that I don't miss my daily doses of either of them. 

My burning and stinging dry eyes are not flaring all day as they used to. For a few hours during the day, I actually feel nothing in my eyes!  I am still using Restates and occasional OTC drops.  It's so tiring to have to attend to your body all day long.  I'm sure many of you understand exactly what I'm saying. 

Now, for Chris's protocol:  I modified it a bit by increasing the amount of L-Glutamine because it may be the most important amino acid in the healing of the leaky gut.  Otherwise, I take it once a day as a morning drink with juice.  I have not noticed any adverse side effects.  The worse that can be said is that NOTHING is happening as a result of the protocol.  But, since I have these enormous containers of white powders in my kitchen, prompting my husband to think that I am either a drug addict or a witch, I will continue with this effort to battle Sjogrens as best as I can. Chris said it took months for the protocol to kick in. 

I still have swollen submandibular glands, and intermittent inflammation in my knees on a rainy day.  Dry days are the best for me. 

My ophthalmologist said my corneas look good, and I can feel comfortable taking Plaquenil as long as I am monitored regularly.  I do that anyway.  I will  continue using both the traditional and alternative medicine and will update you as time goes by.



Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: bluegardenia on June 01, 2016, 06:23:37 AM
my problem is with stomach,  i can slow down  antiacids but i dont know where to find hydrochloric acid here in italy they do not sell it. i will ask for pepsine. with my gastritis and acid reflux i cannot take enzymes, they burn. i tried collagen but had to take half the dose bec it burns
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: upquark on June 04, 2016, 11:29:23 AM
I would like to try this too. I am already on the AIP diet and although it helped in my general health, it has not helped with the dryness in my mouth and eyes. My problem is I am in a strict no grains diet and it seems most Vitamin c powders are made from corn, which I avoid at all costs. Could I use Vitamin C pills instead?
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: chrisr on June 06, 2016, 10:37:02 AM
Here is a little write up on why you shouldn't worry to much about the ascorbic acid Vit C.

http://www.approachwellness.com/best-vitamin-c.html
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Scottietottie on June 06, 2016, 12:21:02 PM
Its possible to get gluten free oatmeal and rice is a gluten free grain.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: GgcJap on October 23, 2016, 05:42:17 PM
Hi All,
I couldn't access the blog but have read it through someone else's posting on another site.
I couldn't access the list of supplements he is currently taking at the bottom of the page though.
Would someone be so kind as to list them here for me?

Thx in advance

GgcJap
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SunshineDaydream on October 23, 2016, 08:31:13 PM
Hi All,
I couldn't access the blog but have read it through someone else's posting on another site.
I couldn't access the list of supplements he is currently taking at the bottom of the page though.
Would someone be so kind as to list them here for me?

Thx in advance

GgcJap

I haven't tried his cocktail, but this is from my notes of what he said:

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.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: GgcJap on October 23, 2016, 10:53:42 PM
Hi SunshineDaydream,

Sorry to be so confusing, Ive read the main blog which has his cocktail but at the bottom Chrisr says these are the supplements Im taking now. The page I read there is just a box and if I click on it it tries to take me to the original blog page which I cant access.
Are those the same supplements as in the main blog?

GgcJap
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: SunshineDaydream on October 24, 2016, 06:55:09 AM
GgcJap, maybe this will help. There are some pictures at the end of this link that I found through whatyousjo's blog entry referenced on page 2 of this thread:

http://www.whatyousjo.com/wp-content/uploads/2016/05/My-Sjogren%E2%80%99s-Recovery-Journey-_-My-Recovery-from-Sjogrens-Syndrome.pdf
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: GgcJap on October 24, 2016, 07:52:01 AM
Thank you SunshineDaydream your the best.

Exactly what I was looking for.

Thanks again

GgcJap
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: Alek on November 01, 2016, 02:04:19 AM
Does anyone still continue with Chris protocol? I remember that a few months back some of us decided to give it a try. It is my 5th month on the protocol, and unfortunately I can't say it helps with dryness in my eyes and mouth. Chris said that he noticed more and more moisture since month 3, but definitely it's not my case. Sometimes it seems that other symptoms became less annoying within last months, but it could be usual wax and wane, so I'm not quite sure. I guess it would be good to share experience from time to time finding out if the protocol has any value or not.
Title: Re: How I Recovered from Sjogren's - The Link to Blog
Post by: GgcJap on November 01, 2016, 03:58:28 AM
I'm on AI paleo though I will be trying the cocktail and supplements in the near future. I'll post with my progress.

GgcJap