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suecat
Member in Phase 2
| Joined: | Thu Feb 14th, 2008 |
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| Posts: | 70 |
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Posted: Fri Nov 7th, 2008 23:52 |
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Hi Mper's,
I'm endeavoring to perservere on restart of Ph 1. I've had mounting
dryness/inflammation in GI tract reminicent of Sjogren's syndrome ever since retiring
my essential fatty acids from diet (I think they were a crutch kinda like glue holding
me together loosely)
I've had blood work this week to test for things such as this as I'm so severe at this
point in restart even going slow and steady and gallbladder test scheduled next week.
??Has anybody had experience with Sjogren's syndrome -- excessive dryness in muscous membranes nose, eyes, mouth can affect GI tract and organs as well.
Would like to hear of other's experinece if this is legit question for here and what helped as palliative.
Please "Pm" me.
thanks all,
sue
Last edited on Sat Nov 8th, 2008 00:14 by suecat
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FMS/CFS 125D55 25D32 Ph1Apr08 cal/mag guaifensen gabapentin doxylamine NoIRs covered up low lux home
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suecat
Member in Phase 2
| Joined: | Thu Feb 14th, 2008 |
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| Posts: | 70 |
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Posted: Sat Nov 8th, 2008 16:00 |
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Hi Again,
Sue here. I just updated my e-mail on my profile as we recently moved and I got a
new address. It's updated but just in case anyone wants to PM me
please do so at sue.cato@att.net . It should register as so for private MP e-mail as
well as of right now
thanks,
suecat
Last edited on Sat Nov 8th, 2008 16:02 by suecat
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FMS/CFS 125D55 25D32 Ph1Apr08 cal/mag guaifensen gabapentin doxylamine NoIRs covered up low lux home
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Chris
Advocate
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Posted: Sat Nov 8th, 2008 18:51 |
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Sue,
I had the trifecta, dry eye, dry mouth, dry gut, but no doc ever called it Sjogren's. The opthmalogist noted dry eye, but just suggested drops. The internist called it irritable bowel. I didn't know I had dry mouth, until one day the herx started being a voluminous, continuous flow of saliva as the glands started working again.
It does resolve. The resolution of the eye and mouth isn't so much of a problem, but the dry gut herx can be hard to take. Stock up on the Metamucil.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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suecat
Member in Phase 2
| Joined: | Thu Feb 14th, 2008 |
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| Posts: | 70 |
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Posted: Sat Nov 8th, 2008 20:38 |
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Hey Chris,
Thanks for replying. You might want to check out Sjogren's syndrome info as I'd be
curious what you thought of it related to some of your symptoms (pre-MP) (you can have it systemic where it affects the gut)
I read your interview and the after eating fevers is something i get too, especially
fatty stuff as you mentioned.(been going on for all adult life) In fact my entire adult
life is geared around my disease symptoms too where I've always had to eat very carefully. At this point I look
emanicated and am mal-nurioushed no doubt.
I had always chalked it up to allergies as I have a host of those and connected it to something I was eating so I kept adapting my diet. I ate extremely healthy for years and got no better....couldn't understand why as it seemed to work for other people.
I had been doing a ton of essential fatty acids/oils and to keep my gi tract lubricated (pre-MP).
Since withdrawing for PH 1 my GI tract has gone beserk. The "efa's" were loosely holding me together.
I am very insulin deficient (can't think of what it's called when you can't get insulin the cells but not full blown diabetic) also but haven't been diagnoised as diabetic. I do get the shakes/trembling maybe like something you spoke of???? I have burning nerve inflammation, burning gut very severely at this point and buring in limbs also. It's frightening
as I've seemly got so much "acid " coursing thru my body. It comes out my pores and burns my skin. My mucous membranes are toast...eyes/nose/mouth/gut/skin like the sahara desert ..a layered dryness..bone dry and scalded feeling.
Did you sweat??? I can't sweat I suspect because of the fibrosis that has set up in the tissue. I've got the Raynaurds type symptoms too, did you??
Exercise was as you described completely depleting though it did have a temporary elation effect on my severe depression.
Wow so you say you have improved???? I'm amazed that you were able to continue to work!! I'm completely benched.
...Also I see the same signs in my kids as I had as a child, pink eye, dry lips, skin problems, constipation, excessive thirst....not a pleasant revelation they are both under age 14.
Wow still trying to wrap my mind/heart/soul around this ...
sue
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FMS/CFS 125D55 25D32 Ph1Apr08 cal/mag guaifensen gabapentin doxylamine NoIRs covered up low lux home
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Chris
Advocate
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Posted: Sun Nov 9th, 2008 00:30 |
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Sue,
I had a number of the Sjogrens symptoms: dry eyes, dry mouth, dental cavities, fatigue, dry skin. During the MP, I could add a dry cough and muscle and joint pains as herx from the list of Sjogrens symptoms. I've no idea of how many of these symptoms you need before it's enough for a Sjogrens diagnosis, nor how severe they have to be. My dentist said they call it dry mouth when the dental instruments stick to the side of the mouth. Seems you have to be extremely dry (or scared spitless, depending on the dentist) before it's considered a symptom.
Do I sweat? Now I do, then I did not. That whole story is probably a TMI thing, as at times it seems my sweat glands were also high volume toxic waste outlets at times.
I did manage to keep my job through the MP, though I did take a couple of months disability leave. And it didn't go that easy at work. One of the things about cognitive dysfunction, is that you get stupid and don't realize you are stupid and wait too long to take disablity, and then come off leave way too early. But then, proving cognitive dysfunction in a 20 minute office visit needs a level of convincing that only convinces the doc that you don't have it.
The kid thing, that's the scary part. Our kids were up and out when we figured this out. Both got checked, and one was diagnosed with Lyme, which seems to be responding to the more conventional antibiotic approach. Both think we are nuts on the subject of the MP.
One thing we did find out is that Lyme in kids can cause difficulty in waking up, and constipation. Who knew? It would have save a lot of yelling and heartache, if we knew then what we know now. The excessive thirst thing is a diabetes symptom, which I expect you know. Scary stuff at that age.
It is kind of mind bending, isn't it, this whole MP thing?
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Lottis
Health Professional
| Joined: | Sun Jan 21st, 2007 |
| Location: | Akureyri, Iceland |
| Posts: | 75 |
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Posted: Sun Dec 28th, 2008 16:15 |
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Hi Suecat! 
I just visited one of our members homepage about sjogrens syndrom. He is from Norway, Martin78
He writes about his road to diagnoses, and it is very impressive reading about the struggles for him to finally get the right diagnose. I admire his effort to do this webpage. http://www.youngsjogrens.com/Myroadtodiagnosis.html
He puts into words the struggle that many of us are going through. Just writing about it, is to live it over again. It is a stong achivement he has done, and a witness to the effect of the MP treatment. Read it!
/Lottis
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HTN,LVH,arrhythmia,hypercholesterol e.c.t. IBS fatique chr rhinit acne rosasea appendix-75 salivestones-89, gallblader-99, fibromyositis, e.c.t. 14feb-07 25D 7,8 &1,25D 38 http://www.nordurland.is/default.asp?cat_id=27
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Martin78
Member
| Joined: | Sun Jul 15th, 2007 |
| Location: | Norway |
| Posts: | 131 |
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Posted: Mon Dec 29th, 2008 10:15 |
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Thank you for spreading the word about my site Lottis!
Just to let people know that if visitors to the site finds "something interesting" advertised on the google ads on my site and click on them, I will donate the net revenues generated to the ARF!
So click away!!
I also wish everyone a happy new year!
http://www.youngsjogrens.com
Best Regards
Martin
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ON BREAK Sjøgrens Fatigue "B-sxs" itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium NoIRs limited outings covered 25D56 (April08)
http://www.youngsjogrens.com
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Martin78
Member
| Joined: | Sun Jul 15th, 2007 |
| Location: | Norway |
| Posts: | 131 |
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Posted: Thu Jan 1st, 2009 19:44 |
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(BUMP)
Visit, read about sjogrens, click the adds if you see something interestring, and support ARF!
It only takes a minute
http://WWW.YOUNGSJOGRENS.COM
Happy New Year!
M.
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ON BREAK Sjøgrens Fatigue "B-sxs" itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium NoIRs limited outings covered 25D56 (April08)
http://www.youngsjogrens.com
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