posted
Just found out from my GP that I have Sjogren's. I was being checked for Lupus....so at least that one is negative!
I'm just now researching the Sjogren's. I do know it's autoimmune.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
TuTu,
WWWWWWHHHHHAAAAAAT? You've got to be kidding me!
Isn't this just way too much at once? Geez, what do you do for that? It is autoimmune no?
Big hugs to you, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Oh TuTu!!
Isn't that when your skin starts to lose it's elasticity and gets really tight? I tell you, Lyme just screws everything up doesn't it? All the secondary problems we get from being ill so long...
My heart really goes out to you - you're such a great person and you don't deserve all that you're going through. Are you still rifing?
I hope you can get to the bottom of all this and find the right treatment path for what's going on.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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What tests were done?
I was told I had this just before the lyme tests become clearer but no one ever really did any tests. They seem to hand the dx out with anyone who has dry eyes. Although, I read that it can be much more complex than that.
Dry eyes were my main problem. Special eye drops help.
All the other symptoms are pretty much like lyme. I find the adrenal support measures to help.
I have to wonder if this "syndrome" is like FM or CFS and - sometimes - it can be confused when a doctor is not aware of lyme + co.'s effect on the body.
quote:Originally posted by lymielauren28: Isn't that when your skin starts to lose it's elasticity and gets really tight? I tell you, Lyme just screws everything up doesn't it? All the secondary problems we get from being ill so long...
No, not scleroderma...thank goodness....but it's associated with it.
+++++++++++
I'm wondering if this is affecting my heart and lungs, pancreas, etc, etc.
INFO:
Symptoms
Salivary glands Sjogren's syndrome can be difficult to diagnose because the signs and symptoms are similar to those caused by other diseases and can vary from person to person. In addition, the side effects of a number of medications can mimic some signs and symptoms of Sjogren's syndrome. Still, typical signs and symptoms of Sjogren's syndrome include:
Dry eyes Dry mouth Dental cavities Fatigue Enlarged parotid glands -- one particular set of your salivary glands, located behind your jaw and in front of your ears Difficulty swallowing or chewing Change in sense of taste Hoarseness Oral yeast infections, such as candidiasis Skin rashes or dry skin Vaginal dryness Dry cough that doesn't produce sputum Joint pain, swelling and stiffness
MY symptoms? All of the ones in bold.
"Sj�gren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands.
Sj�gren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans.
Nine out of ten patients are women. The average age of onset is late 40s although Sj�gren's occurs in all age groups in both women and men.
About 50% of the time Sj�gren's syndrome occurs alone, and 50% of the time it occurs in the presence of another connective tissue disease.
The four most common diagnoses that co-exist with Sj�gren's syndrome are Rheumatoid Arthritis, Systemic Lupus, Systemic Sclerosis (scleroderma) and Polymyositis/Dermatomyositis.
Sometimes researchers refer to the first type as "Primary Sj�gren's" and the second as "Secondary Sj�gren's." All instances of Sj�gren's syndrome are systemic, affecting the entire body.
The hallmark symptoms are dry eyes and dry mouth. Sj�gren's may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain.
Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Goodness, I'm so sorry to hear this news. How did they diagnose you with this, and are they sure? Praying for your health and happiness!!!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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posted
The doctor ran a panel which I think was an arthritis panel. He said it would look for lupus, and if it was neg, it would look for the next disease and so on.
The test says "Anachoice Screen" .. Sjogren's Antibody (SS-A)
Says "a positive result at this stage of testing stops further testing, and does not preclude additional positive antibodies."
Well... that's kinda scary!
"These antibodies may occasionally be positive early in other connective tissue diseases."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Yes, I am interested in what tests they used to diagnose this, also. My Rheumatologist keeps thinking I have this, but whatever test it is that he runs for it, always comes back negative. Most recently he has diagnosed me with "A Connective Tissue Disorder" based on abnormal ANA, C3 protein and C1q Immune complex. He believes it is most likey Lupus. It DOES seem like it never ends.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
What are the treatments?
I'm sorry you have this. Is it curable?
I've heard of this but don't know anything about it.
Posts: 1761 | From USA | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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What does your LLMD say about all this? I know lyme can affect the immune system.
The antibodies don't have to be around forever.
I'm thinking that if lyme causes the abnormalities, perhaps your LLMD will have some good information about how to proceed.
As for good eye drops, EyeBob sent me this note some months ago:
" . . . the best artificial tears that are unpreserved are the Refresh Plus brand. They are still made and come in individual dosings. I think that Bion tears may still be available as are a few other non-preserved brands. Stick with Refresh Plus and you cannot go wrong.
If you're a contact lens wearer and you're trying to avoid chemicals, stick with Clear Care or Ultrazyme and use a sterile saline rinse like Clear Conscience and you'll virtually be chemical free."
posted
There was an article in the NY Times about it this month...apparently the (blood) tests are only 40% reliable (sounds familiar?!) and the definitive test is a lip biopsy.
The article mentions it is similar to Lyme, Fibro, RA, Lupus, CFS etc.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Ok, tutu and bettyg,
I'm putting my thinking cap on. I have R.A., but so far not sjorgens. Inflammation is behind most illnesses per Dr. Robert Blaylock. Inflammation is what damages the internal organs. You need more moisture in your body. thinking...thinking...
Here is a website I found that looks promising. I am going to read it myself when I have more time. It is natural remedies for auto immune disorders. I only did a quick scan but there is bound to be some helpful information there.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Most of those symptoms also describe lyme disease, and spirochetes like connective tissue.
I have had dry eyes and mouth on and off with lyme. Seems like the on and off part might correlate with lyme too. Does Sjogrens come and go? Is it considered autoimmune? As we know, lyme can cause the appearance of autoimmunity.
Not trying to push you back in the lyme box, but all these syndromes are really not specific to one cause and do not preclude an infectious causation.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I was wondering that with now this, and all the other health issues you've had, if it could all still be related to Lyme? Have you spoken with your LLMD?
Huge hugs!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
Lou, I don't think it comes and goes. One source said it does not go into remission.....another mentions remissions....but that was only one source where I found that.
I think they often treat with methotrexate. I won't be doing that anytime soon!! (have done it before for supposed "RA")
I bought Replenish Dry Eye Therapy and a product with mineral oil ( i think ).. I use the Soothe at bedtime. Worked great last night!
The Replenish is good too. I have one contact lenses. It's really been bothering me lately, but some days the eye without the lens hurts more than the one with!
I will see my LLMD next week. I don't hold out much hope for continuing lyme treatment unless it's with my Rife machine.
My pancreas and bile duct are now very sensitive to abx. I don't want to go through that again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
PS.... The test is called the Anachoice Screen ... Trademark of Quest. {ugh}
It cost $520, if that helps someone find the right test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Lou,
I'm a believer that all auto-immune has an infectious and/or toxic causes and as such can be put into remission if the triggers are removed. I don't think lyme mimics it but actually causes it. Most rheumatologists accept that lyme and other bacterias, viruses, etc can cause auto immunity but they think the original cause is gone and we are left with A.I. I believe the cause is still there and once the cause really is gone, so is the A.I. Our genetics determine how we get sick when we are exposed to triggers like lyme and that is why some of us go auto-immune and others heart disease and others cancers, etc. For me, treating my bacterial infections and clearing toxins in my body has put my R.A. into remission.
Tutu,
Don't listen to the rheumatologists grim projections. My RA was so severe the rheumy didn't give me much hope of doing more than just slowing down the damage and he wanted to do that with methotrexate. Well, that has not been my story and I have done it without MTX thank you.
Think toxins and try to get analysed and treated for toxicity. Just removing toxins from your system (from drugs, bugs, environment)will take so much burden off your immune system that it may be all your body needs to stop the sjogrens symptoms. I'm thinking you have done about all the antibiotics your body can handle for the moment, but if you clear the toxicity, your body may again be able to handle some abx.
I know you have dealt very harshly with yeast but I can't recall if you have done much detoxing (under a doctor's care).
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Detoxing ... would be difficult now with all the meds I'm on. It would be a constant treadmill.
You're right, my pancreas and body are not going to handle more abx. My only hope is Rife. Not doing that right NOW!
I agree with the autoimmune and infection. For sure. I haven't seen a rheumie and don't really plan to. They'll just mess with my head!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Before I became extremely ill, I had all of the symptoms of sjogrens. About once per week I would simply dry up, so to speak. I couldn't get any fluids to absorb inside. It caused me to drink several bottles of water to get even somewhat hydrated. Didn't have the slightest clue what was going on.
When I began treating for lyme, all symptoms subsided over time (meaning treating for lyme and co's and detoxing). Grapefruit juice seemed to help me as I went through the treatment. It somehow helped get fluids into the tissues during the times when sjogrens came up, and helped with die-offs, as that seemed to trigger sjogrens. Fortunately, it only took a small amount.
Adding sea salt to my diet helped also as I think I was mineral depleted from all the water I drank, which was leeching minerals out.
Anyway, based on my experience, I would agree that it just might be the infection rearing its' head again, somehow .
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Shosty
Unregistered
posted
I agree with luvs. I think you can calm down about this, because this diagnosis really doesn't mean you have anything new.
My daughter and I have both been diagnosed with Lyme (CDC positive), lupus (my ANA was 1:5120, the highest my MD has seen), and I also had positive skin biopsy for lupus or dermatomyositis). At some point, someone also thought I had Sjogren's. Honestly, at this point, I don't pay any attention to labels.
It is very doubtful that you should take methotrexate for this any time soon. At the most, rheumatologists use Plaquenil, which many Lyme patients take anyway. The Refresher Plus is good. When they thought I had Sjogren's, I used the kind of product that was halfway between drops and ointment, if anyone knows what I mean.
Lyme affects autoimmune tests, and autoimmunity can also affect some Lyme tests. It is pretty impossible to untangle the truth, and each MD will see the situation differently.
It's believed by many, as the previous poster said, that certain bacteria or viruses, including Lyme, trigger autoimmunity. (one of my children's type 1 diabetes, which is autoimmune destruction of insulin-producing cells in the pancreas, was set off by coxsackie).The question for all of us is whether autoimmune issues continue even if the infection is eradicated.
In other words, I have not yet figured out whether my problems are purely autoimmune, after years of antibiotics, or if my autoimmune problems reflect continued presence of Lyme.
It only matters if we are trying to decide whether to do antibiotics of other anti-bacterials.
Saying that autoimmunity continues after the infection is gone, is basically the position of Steere and others who oppose the idea of chronic Lyme. (They call it post-Lyme syndrome.) And yet, I find myself considering this possibility, after many years of dealing with all this.
In any case, I think, for all of this, that these problems are all one illness, and it really doesn't matter what you call it. I don't think you have anything to be any more upset about than you were before getting this test result,to be honest.
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Low Dose Naltrexone (LDN) is used as a treatment for Sjogren's and it can help with Lyme as well.
You are the perfect candidate having both. And if you do not have Sjogren's it will still help your immune system.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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bettyg
Unregistered
posted
i have NOT had the test tutu talked of over $500.
interesting comments; thanks all for sharing!
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Hey Lymetoo,
I am wondering if I have Sjogren's also. I just posted about unusual swelling in the face, and after researching, learned this can be a symptom of Sjogren's. My amylase and lipase numbers are always elevated slightly, and I have had Raynaud's for the last couple of years. The face stuff is bugging me.
I have also had dry mouth episodes and I think my right eye is affected--itchy in the morning and swelling under the eye.
Lymetoo, which tests did doc run? Is this your llmd or another doc?
Di
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
I am wondering if I have Sjogren's also. I just posted about unusual swelling in the face, and after researching, learned this can be a symptom of Sjogren's. My amylase and lipase numbers are always elevated slightly, and I have had Raynaud's for the last couple of years. The face stuff is bugging me.
My enzymes were high while having the bile duct problem. OK now I think.
I have Raynaud's too. It's been really bad lately and winter is approaching....ugh!
Lymetoo, which tests did doc run? Is this your llmd or another doc?
It's listed above in two places.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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try not to stress, tho. i agree with luvs too. our body's go through so much with these illnesses, the meds, toxins, clogged lymph and other systems.. no wonder so many syndromes can be the result. even if they can find a test or put a label on it, there are many ways to consider approaching this effectively (meaning, actually feeling better).
don't let the disease label scare you.
i would try as much as you can to learn about and support all the potential causes and see if you don't see changes in what you are suffering with.
just m.o.
best, mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Just remembered another supplement I took for dealing with this condition: Zyflammend by New Chapter. It is an anti-inflammatory herbal complex. I took 2 capsules several times a day during acute phases. Might not be good for those with sensitive GI tracts.
Those who are drinking a lot of water it is important to be careful to supplement with some type of minerals. My physician's assistant ND pointed this out to me. I am not quite sure how to explain the biological process, but somehow when we flood ourselves with water day in and day out, it can pull minerals out of our body, which help us to stay hydrated. It could become a viscious cycle.
Again, offering from personal experience only.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Sjogrens is a cranial nerve issue. The cranial nerves supply the glands. If you have lyme in the cranial nerve you can get sjogrens. Please don't go to those site they are nothing but doom and gloom and people loving it.
Posts: 433 | From new york | Registered: Dec 2004
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quote:Originally posted by cleo: [QB] Sjogrens is a cranial nerve issue. The cranial nerves supply the glands. If you have lyme in the cranial nerve you can get sjogrens.
You're kidding! That's one reason I had my dr check for Lupus. I'm having cranial nerve pain and then there's the Raynaud's. I thought "SOMETHING'S UP."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Sorry to hear of your bad news (((( Lymetoo ))))
I know you say you cant treat lyme to well but do you think that maybe your yeast grew and that could have wacked out your immune sytem more and either
let the lyme come back or the yeast create symptoms itself or some combination?
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Sending you hugs and hoping you find a good solution for this new health issue. You have been my hope, since we're about the same age and both acquired Lyme during childhood.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Lymednva....I think that's my problem. I've had this for 50 yrs now. Things are going to fall sooner or later with this illness {lyme, I mean.}
I'll be even more vigilant on the yeast. I behave most of the time.
One thing that I did wrong was I tried to get off the cortef this summer. Things began to fall apart soon after and I went right back on.
The cranial nerve pain is much better now that I'm back on the cortef. I also tried to get off my anti-depressant. That wasn't a good move either.
I'll survive this too. No worries about that, gang!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Holy Cow!!!!
Sending you positive thoughts and prayers to you.
Just can't help thinking this is all related to our Special Disease process.
Keep us posted....please.
Call me if you need anything. Anything at all.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
OK Tutu -
Do 4 months of Biaxin, Artemesiae and Circulation P, 1st month do Zhang's Allicin then, at 1 month in drop the Allicin & add 3 months IV Rocephin, last 4 days drop Biaxin & add Diflucan & Flagyl, then start Bactrim DS & do 5th day of Flagyl, then continue with Bactrim DS & Diflucan and let me know if that stuff goes away.
Sound good?
My MS related freaky stuff seems to be doing OK, knock wood.
hugs & MORE prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
After my episode with stones in the bile duct, abx are a no-go ... I have doubts about herbs too.
Allicin I would consider. IV ROC....no way
Those who said they may have Sjogren's need to find out. If you have it, you are at a high risk for lymphoma.
I plan to get checked out.
See the NY Times link someone posted on page 1.
Top 8 Warning Signs of Lymphoma By Indranil Mallick, M.D., About.com Created: June 21, 2007
Lymphoma occurs inoccuously, often so harmlessly that it takes some time before you may realize that there is anything seriously wrong. Here is a list of the common symptoms of lymphoma.
But you must remember that most of these symptoms are common with many harmless conditions. You should not panic if you have any of these symptoms.
Consult your doctor, and he will be able to address most of your fears and doubts.
1. Painless lumps in your neck, armpits or groin This is the most common symptom and often the only one. These are enlarged lymph nodes. Most people first notice these lumps while bathing or changing, or they may be first felt by your partner.
All of the other symptoms that are given below should be present along with these enlarged nodes to be specific as a warning for lymphoma. Only an enlargement of nodes may not be specific for lymphoma. See the article Are enlarged nodes always a sign of lymphoma?
2. Weight loss Weight loss usually occurs rapidly over a period of a few months for no known reason. Often an individual can lose ten to fifteen pounds over a couple of months.
3. Fever Fever that is continuous or occurs intermittently over a period of time and doesn't seem related to a chest or urinary infection should be a cause for you to consult a doctor.
Fever that is related to node swellings occurs commonly with infections and many lymphomas are often mistaken as infections at the early stage. Occasionally, in those affected by Hodgkin lymphoma, a characteristic fever called Pel-Ebstein fever occurs.
4. Excessive sweating at night This unique situation may be quite bothersome. You may wake up at night drenched in sweat without any apparent reason. 5. Itchiness all over your body Another unique situation that is related to the secretion of some special chemicals from the lymphoma cells.
6. Loss of appetite As lymphomas spread within your body and grow in size, many individuals feel a considerable loss in their appetite. Weight loss of more than 10% can be a matter of concern as it is a poor prognostic factor for lymphomas.
7. A feeling of weakness As cancer cells are always growing, they use up more of the body's nutrients, leaving the body with less. This makes you feel weaker.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I thought ceftriaxone (Rocephin) was the only one that caused biliary sludging.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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