Author Topic: How I Recovered from Sjogren's - The Link to Blog  (Read 17816 times)

chrisr

  • Newbie
  • *
  • Posts: 35
How I Recovered from Sjogren's - The Link to Blog
« 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

LucyD

  • Hero Member
  • *****
  • Posts: 592
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #1 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


Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13468
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #2 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. ????
« Last Edit: May 14, 2016, 01:33:44 PM by irish »

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13468
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #3 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.
« Last Edit: May 14, 2016, 05:24:13 PM by irish »

SjoDry

  • Hero Member
  • *****
  • Posts: 936
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #4 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
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;

Wal

  • Full Member
  • ***
  • Posts: 191
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #5 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!

kimberly64

  • Sr. Member
  • ****
  • Posts: 303
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #6 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
« Last Edit: May 14, 2016, 04:35:56 PM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

bluegardenia

  • Hero Member
  • *****
  • Posts: 648
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #7 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
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

LucyD

  • Hero Member
  • *****
  • Posts: 592
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #8 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.
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

singeanna

  • Newbie
  • *
  • Posts: 35
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #9 on: May 14, 2016, 06:49:49 PM »
Thank you! Reading your blog has inspired me!!

chrisr

  • Newbie
  • *
  • Posts: 35
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #10 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
« Last Edit: May 15, 2016, 03:55:23 AM by Linda196 »

Linda196

  • Administrator
  • Hero Member
  • *****
  • Posts: 5077
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #11 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).
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

kimberly64

  • Sr. Member
  • ****
  • Posts: 303
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #12 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 
Sjogrens, Evoxac, Restasis , Omega3

bluegardenia

  • Hero Member
  • *****
  • Posts: 648
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #13 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!!!!
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

Lindabridge

  • Jr. Member
  • **
  • Posts: 54
Re: How I Recovered from Sjogren's - The Link to Blog
« Reply #14 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. 
Relapsing Polychondritis,Secondary Sjogren's, Acid Reflux,Osteoporosis, Synthroid, Plaquenil, Losartan HCTZ, Acidophilus,Omega 3, D3, Calcium, B12, Restasis