For Those Of You With Sjogren's...

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Dec 6, 2010.

  1. Mikie

    Mikie Moderator

    Do you have problems with lymph node pain? I think some of the pain in my face is from the salivary glands. They hurt like they did when I had mumps. My underarm lymph nodes are so sore that the soreness has traveled to my breasts. I keep applying heat and massaging but it's getting worse.

    I am having my labs done on the 15th and seeing my doc on the 23rd. From what I have gleaned online, regardless of the outcomes of tests, it can be almost impossible to get a diagnosis. Right now, I just need some help with treating the symptoms. Any help anyone could give would be much appreciated.

    Love, Mikie
  2. Mikie

    Mikie Moderator

    That someone here can help. Thanks.

    Love, Mikie
  3. gapsych

    gapsych New Member

    Did you get your labs back?

  4. Mikie

    Mikie Moderator

    Thanks so much for your responses.

    Jam, I can't take the herbal extracts as it blocks the Guai which is helping me stay off opiods. I also saw it recommended and wish I could try it.

    Gap, I go in to have the blood drawn tomorrow. We had to put the labwork back a bit so that it's been a calendar year between labwork tests. Some of the tests are just part of my yearly preventive care and my ins. won't pay for those unless a full 12 months, to the day, has elapsed. Some of the tests are screening and some others are to manage my conditions. So, it's a mixed bag of tests. Since there is really no treatment, I didn't think it would matter to wait a bit.

    I've been putting hot packs on my eyes and massaging my eyelids to get the oil running in the glands. I think it's helped my dry eyes a bit. It has also given me bags under my eyes despite using creams to get rid of them. It was the pos. result to this new dry eye test which got me to thinking about Sjogren's as it is now an indicator of this condition. Non of the tests is definitive, though. Even a neg. result to the saliva gland biopsy doesn't rule it out 100 percent. No wonder it takes, on average, 6 1/2 years to get a diagnosis.

    I'll let y'all know as soon as I get the results. I see the doc on the 23rd.

    Love, Mikie

  5. Mikie

    Mikie Moderator

    Used to be that the eye docs could only tell you whether or not you actually have dry eyes. This is a brand new test which can tell the doc whether you have a certain type of dry eye which is indicitive of Sjogren's. That is when the oil glands in the eyelids do not produce enough oil to cause tearing. I have to put hot, wet compresses on my eyelids twice a day and then, massage them. It is supposed to get the oil running.

    Since I've had the eye test, I've had blocked lymph nodes in my neck and underarms. This has caused a great deal of pain. I've been putting heat on them and massaging them. I also have painful salivary glands and dry mouth, another Sjogren's symptom.

    There is no cure for Sjogren's, and it is next to impossible to diagnose for certain, so all we will do is try to determine whether I have it and treat the symptoms. It is an auto-immune illness, so it can attack other areas of the body. I don't want to take steroids so I hope the symptoms will limit themselves to just the dryness and blocked lymph nodes. I can deal with those. Some with Sjogren's go on to suffer liver cirossis (sp?) or lymphoma. Most people don't realize that FMS and/or CFIDS can produce lymphoma as well. Hah, our illnesses are the gifts that just keep on giving!

    Take care.

    Love, Mikie
  6. Elisa

    Elisa Member

    Hi Mikie!

    I found this on Dr.Amy Yasko's site - Dr Amy is responding to a question regarding Sjorgrens...

    You have to become a member/register to access most posts/threads (so I copied it below):


    Dear Jaime,

    Yes, the mycoceutics is an excellent mushroom/immune support that I really like and may be helpful for you. In addition, the use of lactoferrin (adults can take up to 3 at a time, 3X a day) along with moducare, metals 1 used topically and HF and NC may be very helpful based on my past experience with individuals addressing shingles. Also the use of the BCAA in low doses may be of help. I would also consider using the nucleotides daily, although I have not tried that in the past with respect to shingles. However, based on how nicely lactoferrin works and the relationship between SHMT and lactoferrin and also the use of nucleotides that is another supplement you can consider.

    In terms of the Sjogren's...there is some literature to suggest a relationship between chronic viral issues, retroviruses and Sjorgren's. In addition, the methylation cycle has been implicated as potentially being involved, and the use of SAMe in particular has been mentioned. So, I do think that it would be worth thinking about the nutrigenomic panel and looking at this program. As always, Di should be sure that her friend is also going to work in conjunction with her doctor on any nutritional program.

    With love and hope,


    They also mention using slippery elm lozenges for mouth dryness.

    I have the same issues Mikie - mouth, eyes, lymph glands etc. It's no fun at all.

    Take Care & God Bless,

    [This Message was Edited on 12/15/2010]
  7. Mikie

    Mikie Moderator

    Thank you so very much for this info. I didn't quite understand her reference to the methylation cycle. Does this mean that the methylation protocol may be helpful in addressing Sjogren's? I assume so since she is heavily involved in the MP for our issues.

    Another issue I've noticed is difficulty swallowing. Twice now, I've choaked and had real difficulty coughing up the bit of food. The extreme choaking and coughing caused a very painful burning radiating out from my chest and down my arms. My arms ached for an hour afterward. I was just so thankful to get the offending food up and out that I decided the aching arms were a small price to pay.

    I'll check this out and thank you so very much again.

    Love, Mikie
  8. Mikie

    Mikie Moderator

    I just went back and did more research. I don't think the first round I did stuck with me because at that time, some of these symptoms had not appeared. Now, there are soooo many dots to connect.

    Again, thank you so very much.

    BTW, I registered at the website you provided but I have to wait for acceptance. I had a hard time registering as I don't understand some of the info they were requesting dealing with the web. I finally got past the registration hurdle and am awaiting the e-mail so I can access the site.

    Love, Mikie
  9. mbofov

    mbofov Active Member

    Mikie - Can you drink green tea on the guai protocol?

    Here are a couple of links to studies showing that the EGCG (don't ask me what that stands for!) in green tea can help with Sjogen's symptoms. It was tested on mice, but indicated it would be beneficial for humans too.

    I was watching Dr. Oz this week and he mentioned matcha green tea as being one of the best ways to get its benefits. I just googled matcha and it is supposed to be very high in EGCG compared to regular green tea. It also has anti-cancer properties (I should get some myself!)

    Best wishes,


  10. jole

    jole Member

    I have Sjogren's.....mine started with me thinking my vision had deteriorated terribly because everything had become so blurry I could hardly read, see the computer or tv. My refractory eye test was horrible! The eye doc started me on Restasis eye drops twice daily and Systane gtts twice daily. It took several months to get the moisture back into my eyes.

    I too have the swollen lymph glands and at first was concerned about cancer, but they traveled (of course, like everything and were terribly tender.

    Choking is also a problem, sometimes even on my own saliva. I attributed that to esophageal spasms until you mentioned it, so not sure if it's connected or not. Everything with these DDs are so much fun, and my doc is simply at a loss......she says she loves a challenge, but not this much of one! :) Oh, the joys of small town living and miles to go for specialists! ......Jole
  11. Mikie

    Mikie Moderator

    Mary, thanks so much. I actually have some green tea in my cupboard. I'm not usually a big tea drinker but like a cup now and then. Perhaps I make it a habit.

    Jole, I'm so sorry. I read about the latest symptom over on the CC Board. I hope your doc can find out what is going on. I answered about the Heparin over there but I don't think it's helpful for you, unfortunately. My research turned up choaking, especially on bread, as a symptom of SS. Even if we have saliva in our mouths, our throats can be dry. I've taken to eating bread more slowly and drinking water between bites. The only thing that bothers me is that I have pain in the pancreatic and liver areas sometimes at night. Because SS is auto-immune, I do worry a bit about its attacking my organs. It's rare that it does that, so I'm not going to worry too much about it. If it is attacking them, my lab tests will be abnormal. I see the doc on the 23rd and if the labwork is good, it will be a great Christmas present. Thanks so much for your help.

    It's strange to be facing this now. I don't have the strength to fight like I did back 10 years ago when I was bedridden with CFIDS. Fortunately, there is not a lot to do about this like there was for the CFIDS. I've decided to just accept it, lead a peaceful and grateful life, and do those things which will help. I never expected to be hit with another illness after fighting so hard with the others. I don't know why I thought I'd stay well. This feels like being kicked after being knocked down and having gotten up again. Fortunately, this time, I have the advantage of experience.

    The first symptom with SS was increasing exhaustion until it was almost as bad as when I first got CFIDS. I had planned to work another four years. So much for plans. I've also noticed that I can't tolerate being out in the sun. My research says that, like with Lupus, sun exposure increases the auto-antibodies. In a way, it's a relief to be able to connect the many dots over the last year. I can't remember why I had to stop the methylation protocol but I've gone back on it.

    Jole, please let us know what the doc finds out about your blood.

    Love, Mikie
  12. mbofov

    mbofov Active Member

    You would have to drink a lot of green tea to get an appreciable amount of EGCG, matcha tea does have more, but it's rather pricey.

    I was researching for myself and found you can buy a supplement in capsule or tablet form (e.g., one from Now Foods) that it is really reasonably priced and that is high in EGCG. It's supposed to have so many good properties (including anti-cancer). I still get sick too much so I ordered some for myself today from -

  13. Mikie

    Mikie Moderator

    Let us know if the tea extract helps. It gets so discouraging to be sick all the time. I'll say a little prayer that you feel better.

    Love, Mikie
  14. mbofov

    mbofov Active Member

    I will post how it goes. I keep trying different things - Epicor has helped me some, but something just still isn't working right with my immune system.

    My crashes are lighter, due to the methylation protocol which I will be restarting (for the umpteenth time!) after Christmas. It makes me detox but not as badly as in the beginning. I'm hoping that if I can stick with the MP for a good length of time, it may lift whatever is blocking my immune system from functioning properly.

    Good luck to you too with restarting the protocol - I'm really sorry you have to deal with Sjogren's now - it's not fair (but none of this is). Who knows - the methylation protocol may help with the Sjogren's too! I really hope so for you - take care -

  15. Mikie

    Mikie Moderator

    Elizabeth, above, mentioned the methylation cycle as it relates to Sjorgen's. I've restarted the MP and hope it help me, and you too. Let me know.

    Love, Mikie