Author Topic: How I Recovered from Sjogren's - The Link to Blog  (Read 17805 times)

SjoGirl

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #60 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.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Sharon

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #61 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.
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 #62 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.



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

bluegardenia

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #63 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
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

upquark

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #64 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?

chrisr

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #65 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

Scottietottie

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #66 on: June 06, 2016, 12:21:02 PM »
Its possible to get gluten free oatmeal and rice is a gluten free grain.
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

GgcJap

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #67 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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

SunshineDaydream

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #68 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.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

GgcJap

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #69 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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

SunshineDaydream

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #70 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
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

GgcJap

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #71 on: October 24, 2016, 07:52:01 AM »
Thank you SunshineDaydream your the best.

Exactly what I was looking for.

Thanks again

GgcJap
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

Alek

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #72 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.

GgcJap

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Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #73 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
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil