A Hello & a question or two.

[nmylifeback]

Hi All,

Im not one to roll over when Im sick..Doc's have said go home..watch and wait…no cure no treatment..Im sure it sounds familiar.!

Ive a few autoimmune things occuring,
Gastric Parietal Cell AB's
Hashimotos'
And the worst..Sjogrens !

Just want to ask ..is anyone trying the protocol and had success for Sjogrens type dyness symptoms…my eyes are so dry as is my skin and mouth…

thanks to all posters who reply

JB

[DragonSlayer]

Hi, JB:

I don't have RA, but in AS we get Sjogren's-like symptoms that can be treated with EFAs and GLAs–oil, oil, and more oils.  And, I personally believe (from reading–no direct experience) that everyone with RA should be taking much EVOO (extra-virgin olive oil).  This should be cold-pressed, of course.  We need at least 11g daily and fish oils are good to an extent, but I have had great results with borage seed oil, less so with evening primrose, and never tried black currant oil (these are the GLAs).

Since supplementing with the oils, I have not had the dry eye, dry mouth, dry skin problems to as great an extent as before, but in my case, getting out of inflammation was also a major key.

Hope you find what works for You,
John

[nmylifeback]

Hi John

Thankyou for your response..!

btw Im HLA-B27+ r u ? Hope you dont mind me asking as Im having trouble with my back..Xray showed Osteophyte lipping…causes a lot of pain at times..also get pain in pelvis.. a burning sensatin in right shoulder to middle of back..Doctors have absolutely no idea what the issues are..however AS has been mentioned but the sac joints looked ok via an MRI so they wont dx it as that..

I thought Id mention that one just incase it sounds familiar..
I found out that my neice has AS..since she was a teen now in fifties. So I know this stuff is in the genes.

Ive been taking the Oils for about 4 months..I use Borage Oil(GLA 220mg) x1 per day as well as Omega 3 6 x 1mg..I dont use the Olive Oil though…so far it has not helped..and I just seem to get drier and drier…

Im just wondering if my Sjogrens..is Sjogrens..or part of AS or HLA-B27+ spinoff ! if that makes sense !
ALl my bloods are negative including ANA, ESR, CRP..all the SJogrens tests and Lupus tests..negative. Doctors do not have a clue.

Ive also noticed an increase in joint noise..I can make any joint in my body snap crackle and pop..never used to.

So I still ponder if the protocol may help ?!

[Kim]

Hi JB,

I also have Sjogren's and doctors just kept telling me to pour in the eye drops (Restasis did nothing for me so I use Refresh and Systane, otc).  For 9 months I kept going back to the eye doctors and asking for a different doc each time because I knew it was more involved than that.  Sure enough it was a bacterial staph infection–all tear ducts were blocked and pus was coming out!  They gave me antibiotic salve with Prednisone to use for 2 wks only because it can cause problems of it's own if you go longer.  Most importantly they stressed cleansing a couple of times a day.  There is a product (I think by TheraTears otc) that you use to wash your lashes then after holding a warm cloth on your closed eyes do a gentle massage to try to open things up.  The infection is still there, but a little better.  I know it wants to come back with a vengeance if I let down my guard.

Good luck…….Kim

[nmylifeback]

Hi Kim

Thanx v much for sharing your experiences.

My Sicca symptoms dont appear to be from infection..but Im at best not sure.

I do the warm compresses and cleansing morning and night. The idea is to shift any blockages in the glands in the eye lids and margins. So far it has not helped after 4 months of trying..my eyes are quite quickly drying out.

I see you are in AP for 1 year ..may I ask if your dryness has improved at all ?

My Schirmers test was 0 and 4…that was before I felt drier.

Thanks Kim wishing you all the best

[DragonSlayer]

Hey, JB:

Sorry, but WELCOME to the club!

Im just wondering if my Sjogrens..is Sjogrens..or part of AS or HLA-B27+ spinoff

This last part is absolutely true, and you should eliminate starches from your diet to get out of inflammation, which although insidious is causing skeletal and joint damage.  You have crepitus (noisy joints), which is an early sign of this disease.

Yes, I am B27 positive, and so is Carol Sinclair who had IBS problems more severe than any other manifestation of her AS.  Her book is available on amazon in UK (she never “translated” it into American).  She never knew she had AS until people from another website contacted her about her total starch excluding diet and she finally got tested.

I think that, if you can nip this thing in the bud and have not used NSAIDs (aspirin, aleve, etc) very much, you can heal your intestinal tract enough to not require such a strict diet.

The only difference between a B27 who has AS and one who does not is the integrity of the intestinal tract.  In the early stages of this disease, there is no way that I could have been convinced of this fact, but after NSAIDs greatly accelerated my AS due to ulcers and every other -itis associated with the digestive system, I am now convinced that the mechanism requires LGS and is due to the bacterium Klebsiella pneumoniae. 

Since knocking down the inflammation through diet and antibiotics, my dryness has totally relented.

Good luck to You,
John

[nmylifeback]

John

Yes I think thats the twist !
My starch intake is way down..I avoid chips any potatoes..and am trying to eat more vegetables and at the moment Im also on a gluten free diet..

Ive been doing this since the beginning of the year..my back has flared once since after an over enthusiastic massage.
But is so far not to bad…yet I still have this dryness.

Ive had the IBS for many years off/on sometimes worse than others. I will check that book out ! thx

Seems I have may have a few overlaps causing all these symptoms…

ATM apart from Dry Eyes and mouth..the second worst is fatigue..then comes my shoulder which ranges from intense ticklish feeling to sore burning and sharp pain…I cant seem to stop it..drives you crazy.

John could AP therapy help me do you think ?
I feel Im doing everything I can  to help myself but it seems it's not enough to stop the dryness or fatigue worsening.

Thanks for all your help
 

PS I looked for more about Carol & the low starch diet and found this website and this great interview/phone in with her (goes for about 50 minutes)

http://lowstarchdiet.net/index.html
http://www.abc.net.au/overnights/stories/m1056476.ram

[Kim]

Hey JB,

You asked if the dryness has improved since I started AP, and unfortunately it has not, but many other things have so I'm not complaining.

Kim

[nmylifeback]

Hi Kim

Glad to hear you feel other symptoms have improved..of course i wish your dryness would to..perhaps it will yet..i wish it so.

thanks for being honest.
Im still debating in myself if to give the therapy a go..certainly Im seeing a Doc who is willing to try it if I wish.

thx again Kim

[DragonSlayer]

Hi, JB:

Yes, it will certainly help you and if you send me an email I will return my own AP for AS.  Gosh, I sure know about the fatigue and be careful about the shoulders–I developed adhesive capsulitis one of the worst experiences of my life.  Had to quit racquetball altogether.

GF is not enough for AS; it must be NSD all the way for a time.

Some people with AS and not following the diet have had good results with the duct plugs so tears do not drain out so rapidly.  It is possible that you will require this, but I think you will still need to do the diet if you are considering antibiotics.  Some people have tried the antibiotics without attention to diet and the antibiotics stopped working after about one year–they obviously 'selected out' a resistive strain.

If you cannot think of any specific trigger for your AS (some stomach or intestinal infection), it is possible that candidiasis is a factor, since that is so insidious, so it is important to consider treatments for this before and during antibiotic therapies.

The interview with Carol is pretty good.  I was fortunate enough to see her at a seminar with Professor Ebringer in Las Vegas.  He wrote the foreword to her latest book; he explains the mechanism behind AS and she has stories and wonderful recipes that have kept her SIJs from fusing.  Her father had severe AS and was quite hunched over from it, but her nephews will never suffer like he did and will never be diagnosed with AS if they follow her diet.

Health,
John

[nmylifeback]

Hi John

Thank you v much for your help.
Have sent you a PM with Email addy inside.

Certainly I will give this a go..Im lucky I have a Doc who has said he would work with me with an AP…and now Im on the NSD already..it's not easy but again Im getting help with that from my wife as well.

Thanks for the tip with the shoulder..it had started to lock up at times..maybe it's what you speak off ..capsulitis..having regular massages help and stretching along with regular exercise..also seems to help.

Thx again

JB

[Karen R]

I too have Sjogren's with severe dry eyes. I tried Restasis and plugs and still no help. After being on AP for some time, I can now wear my contacts again. I believe it is an infection and limited sugars and starches help greatly. In my case I was very sick with Scleroderma so I required three different antibiotics and anything to reduce inflammation.

 

Karen R

[nmylifeback]

Hi Karen

Thanks you heaps for posting.

Im really glad you have got some tears back…Im going to give it a go ..JB is going to give me his AP regime…

All I have to do at the moment is get my thyroid level right before I start.

From what Im reading…as ever what works for some does not always work for all..so you never know…however listening to your own and Kims and John's experiences ..it is worth a trial on AP.

Thanks Again

JB

[nmylifeback]

To John AKA DragonSlayer

thx I recieved the Literature…the AS 2006 paper Im finding very interesting…

I found mentioned and explained is the episodes of Inflammation go on until damage can be seen…only then will you get an AS diagnosis from a Doctor…

This is so true….my Sac came back negative for Arthritis so Doc's will not call it AS….according to the paper Im Pre-AS and if episodes continue soon the damage will be enough to be seen.

My Rheummy told me to go home as my Sac joints were OK…that was it..no diagnosis just go home LOL…

This paper is on the money !
Now I really would like to find a Rheummy that is up with this information in the area…but I fear not !

John thx again..Im still reading…I guess being Pre-AS I do have a chance with AP therapy.

JB

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