5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I just found out yesterday I have tested positive to this disease.MY test is as follows:
sjogrens antibodies SSA -normal/negatice is 1.00 Greater than 1.0 is psoitive. Mine was at 1.7-H
Rheumatoid factor was also high but not horrible at 14.
neg for lupus.Thyroid panals always normal.
I googled it and the symptoms are so close to my lyme: extreme fatigue,muscle/joint pain,gastro-reflux,perpheral neuropathy and occational dry eyes, & mouth. Can also cuase blood vessel problems/organ problems/immune sytem problems also.
Does anyone else have sjogrens and lyme too? Is this collateral damage associated with lyme? I wonder how common this is with chronic lyme. Or is this a total seperate disease?
I wonder also if this could this be another bougus disease of a group of "syndromes" that the medical establishment has come up with like CFIDS ect.. To explain away lyme? If so why would they have a blood test for it? What I am trying to ask is this a legitimate disease?
Now after 3 years of treatment I don't know how much of my symptoms are left over from having chronic lyme for 20 years and how much is it from sjogren's. The symtoms are so related.
How will I ever know if I got my lyme in remmission with having sjogrens symptoms so closely related? I am really feakin out.
I did a search here in medical and there where only 3 posts.
Any feedback or shared experince's would be greatly appreciated.
Thanks ahead of time dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Here is what I found on the website. I split it up to make it easier to read. See below.
I hope you will continue treatment for Lyme disease. I am not sure this is one of the syndromes that Lyme can imitate;hopefully someone else here will know for sure.
But in either case, your immune system needs all the help you can give it.
I do worry that they will put you on steroids. If they do, please insist that you also take antibiotics, as steroids will allow Lyme disease bacteria to thrive and multiply.
Please keep us posted. Ann - OH
[quote] What is Sjogren's Syndrome?
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the glands that produce tears and saliva. Sjogren's syndrome is also associated with rheumatic disorders such as rheumatoid arthritis.
The hallmark symptoms of the disorder are dry mouth and dry eyes.
In addition, Sjogren's syndrome may cause skin, nose, and vaginal dryness, and may affect other organs of the body including the kidneys, blood vessels, lungs, liver, pancreas, and brain.
Sjogren's syndrome affects 1-4 million people in the United States. Most people are more than 40 years old at the time of diagnosis. Women are 9 times more likely to have Sjogren's syndrome than men.
Is there any treatment?
There is no known cure for Sjogren's syndrome nor is there a specific treatment to restore gland secretion.
Treatment is generally symptomatic and supportive.
Moisture replacement therapies may ease the symptoms of dryness.
Nonsteroidal anti-inflammatory drugs may be used to treat musculoskeletal symptoms.
For individuals with severe complications, corticosteroids or immunosuppressive drugs may be prescribed. [end quote]
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Do you have a good LLMD? This is a question for the LLMD. They should be able to tell you the interplay between the two diseases. I am sure there is one.
I dont have definitive answers though.
just pure sympathy. I am sorry to hear this, you must be very upset, Hang in there, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
oh and whatever you do DONT take steroids as the above article suggests!!!!!!!! Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks Ann-OH for responding.
And thanks for lisiting the page.
In most webb sites I have visited it was the following symptoms(not sure this one I have to go back and check) that caught my attentiom : Extreme faigue,muscle/joint pain,gastro-problems and neuropathy. (The dry rpoblems I can live with)
Not planning on stopping treatment for my lyme. And steroids are a big NO Never!
The delema comes in when I ask myself how much is the lyme and how much is from the sjogren's.
How will I know if I got my lyme into as much remmison as possible with the new knowledge of sjogrens since the symptoms are so similar?
Very frustrated and confused
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Useful in the differential diagnosis of systemic lupus erythematosus {SLE} versus mixed connective tissue disease {MCTD}. Might be needed with suspected autoimmune disease {e.g., SLE} in patients with negative ANAs. ENA may be detectable as a speckled pattern ANA. Up to 85% of patients with Sjogren's disease without rheumatoid arthritis {RA} have SS-A and-or SS-B antibodies. In patients with Sjogren's with RA, incidence of SS-A and SS-B antibodies is lower. Test Methodology:
Enzyme Immunoassay Additional Information:
The ENA antibody test detects antibodies to nuclear antigens {RNP, Sm, La-SSB, Ro-SSA}: RNP ANTIBODIES ALONE: Have been reported to occur in 95-100% of patients with MCTD, in 25-40% of patients with SLE, in patients with overlap syndromes, and occasionally in scleroderma patients. Sm ANTIBODIES: Have been reported almost exclusively in SLE, and are noted in 30-40% of SLE patients.
A positive test provides strong support for the diagnosis of SLE. Ro-SSA ANTIBODIES: Have been reported to occur in 88-100% of patients with neonatal lupus, in about 25% of SLE patients, 25% of patients with Sjogren's syndrome and rarely {less than 1%} normal patients.
Approximately 70% of Ro positive, ANA negative patients have SLE. La-SSB ANTIBODIES: These are found in SLE and Sjogren's syndrome. Sjogren's syndrome may be present in 30-40% of patients with rheumatoid arthritis and is associated with other collagen diseases, including SLE, systemic sclerosis, polymyositis, and vasculitis.
Ro-SSA AND La-SSB ANTIBODIES: Ro and La {Sjogren's Antibodies} may be indicated not only for patients with keratoconjunctivitis sicca and xerostomia, but also for those with arthritis, myalgia, pulmonary fibrosis, and cardiac disease. Ro and La antibodies are reported to be present in newborns with SLE due to maternal transmission of antibodies.
Extractable nuclear antibody {ENAB} includes Anti-Smith, Anti-RNP, Anti-Ro, and Anti-La. Sjogren's antibodies {ROLA} includes Anti-Ro and Anti-La. Smith and RNP {SMRN} includes Anti-Smith and Anti-RNP. Each antibody may also be ordered individually: Anti-Ro {ENA-RO}, Anti-La {ENA-LA}, Anti-RNP {ENA-RNP}, or Anti-Smith {ENA-SMITH}.
Get a LLMD lyme causes have the stuff there looking for.
Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Psoriatic Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth's Fisease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, m�ni�res syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders {bipolar, depression, etc.}, encephalitis, sleep disorders, thyroid disease and various other illnesses.
If you have received one of these diagnoses please go to our symptoms page and see if you recognize a broader range of symptoms.
If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks Trail for your sensitive understanding.
I had a wonderful LLMD but the ******* medical kinda put him out-of-touch for a while. Treated me the last 3 years and brought me back in some areas from my last relapse.
I am on a stomach holiday from my meds because my stomach gave out. - gastritis. I always thought my GI issues where from lyme but now I just don't know the line blurrs in many of overlapping symptoms from lyme and sjogrens..
BTW I would never ever take steroids.No way no how!
And thanks treepatrol for lisiting the links and the added info.
I tested neg for lupus. Not sure I understand the medical stuff at the bottom. This will take a while to figure out.
Very confusing as I am not sure this is a legitamate disease?
I am so digusted I am gonna go back to bed
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by 5dana8:
Very confusing as I am not sure this is a legitamate disease?
Its a syndrom that means they havent a clue well matbe a clue. Lyme causes a lot of the same stuff. to bad about losing touch with your llmd.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey treepatrol
Reasurring about the "syndrome" info. Not to be a nag but if it is a syndrome.I wonder why do they have a blood test for it? Makes me wonder how legitamate this blood test is.
Yes. I agree, lyme cause's alot of these symptoms. Now,Not sure where one starts and the other begins.
I know. Hudge bummer about my LLMD. For him and for me
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
posted
Hey, I have tested positive for Sjogren's (4.5); Lyme Disease (Western Blot) and Candida 12,000+ anitbodies. I know where you are coming from on what issue is causing what symptoms because the symptoms for all these overlap.
I address all three in my treatment plan. I believe it's up to me to manage my plan based on my symptoms with the help of my LLMD, rheumatologist and GP since there is no one Doctor who specializes in all three.
I do believe one may have the tendency or heredity for Sjogren's and it is triggered by an immune response....in my case probably Lyme. I know my Candida is a result of Lyme and antibiotics. Hope this helps. MAH
Posts: 58 | From SC | Registered: May 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks abacomah
for your feedback. It does help.
If I might ask what does your what rheumatlogist do for you in the way of treatment.?
I went to one locally once and all she wanted to do was put me on steroids. Left a bad taste in my mouth. I guess there are goods ones and bad ones..
The best and only GP in my area couldn't diaganois his way out of a paper bag so I have not much confidence in either. Not really sure what to do yet.
Thanks again. Food for thought. I appreciate it
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Main Entry: syn�drome Pronunciation: sin-drm also -drm Function: noun : a group of signs and symptoms that occur together and characterize a particular abnormality
One entry found for Sj�gren's syndrome.
Main Entry: Sj��gren's syndrome Variant{s}: also Sj�gren syndrome -sh-gren(z)- Function: noun : a chronic inflammatory autoimmune disease that affects especially older women, that is characterized by dryness of mucous membranes especially of the eyes and mouth and by infiltration of the affected tissues by lymphocytes, and that is often associated with rheumatoid arthritis -- called also sicca syndrome, Sj�gren's, Sj�gren's disease Sj�gren, Henrik Samuel Conrad {1899-1986}, Swedish ophthalmologist. Sj�gren served as a professor of medicine at Lund, Sweden, and eventually held the position of chief physician at the hospital there. He invented ophthalmological instruments. He first described Sj�gren's syndrome in 1933.
Lots of syndrome's Mostly symptoms lyme'is a tough germ it also attacks lymphocytes.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi dana, I'm no expert on sjogrens but my doctor diagnosed me with sicca and said it *might* be sjogren's. He said one would need a biopsy of the lip in order to know for sure. I declined at this time.
Sjogren's is common in fibromyalgia. Chronic Lyme often results in fibromyalgia. I would have to guess that sjogren's *could* be a result of chronic lyme.
My doctor (not LLMD) wanted to put me on a medication called pilocarpine (brand name salagen). It is not a steroid. http://www.medicinenet.com/pilocarpine/article.htm I declined due to fluid and blood pressure issues.
As you've probably read, you can have increased tooth decay and damage to eyes due to dryness. If you don't go on medication, the least you will need to do is be meticulous with dental care (such as cleanings often, floss everyday, brush a min of 2X per day). I have my teeth cleaned every 3 months. Also, if your eyes start to itch keep them hydrated with a good hydrating eye drop. I'm not recommending this for anyone else but the only thing I've found that is helpful for the itching is a very diluted solution of colloidal silver in distilled water. I have no idea what could/would/should be said about the safety of using it that way but it does give me relief when nothing else does. I also have the swallowing problem which seems to have gotten a bit better on antibiotics and with the use of rife.
Some studies show that fatty acid metabolism is a problem in those who have sjogren's. I supplement with Omega-3, Omega-6 and Omega-9 and yet my recent lab tests showed low Omega-3's. My LLMD suggested this might be due to me not absorbing them.
I'm not a doctor but my personal feeling is that sjogren's is likely caused by an infection for some people. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
bettyg
Unregistered
posted
Dana, I've had dry mouth ever since I had to start ALL these darn pills. Dentist finally said I had it too when my tongue was so dry the cloth stuck to it when he examined my tongue.
You can buy a lubricant over the counter, but it didn't help me at all. I DRINK 4-5 64 oz. jugs of water daily. Everywhere I go; jug goes!
Yes, dental care is a must!
I copied this from treepatrol or someone else's link from Canada....
PRINT AND CIRCLE ALL YES ANSWERS
(20 yes represents a serious potential and Lyme should be included in diagnostic workup )
Symptoms of Lyme Disease
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
Rash at site of bite Rashes on other parts of your body Rash basically circular and spreading out (or generalized) Raised rash, disappearing and recurring
Head, Face, Neck
Unexplained hair loss Headache, mild or severe, Seizures Pressure in Head, White Matter Lesions in Head (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
Eyes/Vision
Double or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes
Ears/Hearing
Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears
Digestive and Excretory Systems
Diarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
Musculoskeletal System
Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems
Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockage
Neurologic System
Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness
Psychological well-being
Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety
Mental Capability
Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain
General Well-being
Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature
Allergies/Chemical sensitivities
Increased affect from alcohol and possible worse hangover
IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks again treepatrol . The more I read the more it does sound like a "syndrome"
No way do I questioning my lyme diagnosis. This I know for positive from living it and treating it the last 20 years. It's a tough b@$^@rd.
And my lyme happens to respond to ABX over the years in classic lyme fashion. Sjogrens's wouldn't explain much of my neurological symptoms along the way either. I don't hear much about abx and Sjogrens. I wonder if it is just another lyme disease parading as a "syndrome"
TerryK
Thanks so much for the added insight.
And the great links too.
It's funny because alot of the supps I already are taking for lyme are recommended for Sjogrens.
Breifly reading the links, there doesn't seem to be any treatment options are far as rx goes. Other than eye and mouth help. So maybe it's just as well.
p.s. So the blood test isn't the definitive test. A lip biopsy is? I would also decline the lip biospy too. But I really would like to known for sure. Not that it could make a heck of alot of difference.
Thanks again all for the support.
I also wonder like terry if the Sjogrens is caused or re-lated to lyme. My first impression I would say maybe.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks bettyg
for all your feedback. And appreciate the eye and mouth tips.
Thanks for posting the list.
Yes. I've had lyme for 20 years and have had or still have all but 5 or 6 of the above listed symptoms. No question about it at all.
My biggest fear or dismay is that after so many years of intensive lyme treatment , not sure where one disease starts and and the other ones ends. I.E : Is my persistant fatigue still staying because of the Sjogrens or stubborn lyme symptom. Ect..
But this may just be a moot point if Sjogrens is in fact lyme disease parading as another syndrome. And a moot point also if the blood test isn't definetive and a lip biospy is needed.
Thanks again Bettyg for taking the time and energy to help.
take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
5dana8
See the following websites that deal with rheumatic diseases including sjogrens.
I had a wonderful dentist say to me when I was freaking out over my RA diagnosis:
What is RA? Its not a bacteria. Its not a virus. It is the name for a disorder of which cause is not known. Lyme is one cause that is known. Once you cure the Lyme, the RA goes away.
This made me feel so much better. Perhaps the same is true about sjogrens?
I hope the websites above will give you some valuable information. They both are geared to an antibiotic treatment as opposed to steriods and immune suppressors.
Also, I read that you can have Candiditis without having rheumatoid arthritis, but you can NOT have rheumatoid arthritis without having Candiditis, so definitely check into yeast (systemic not just confined to the vaginal area) Curing this will help with alot of symptoms.
Now, take a deeeep breath while saying "I am" and exhale while saying "relaxed". Repeat until it is true.
Good luck. It is really lyme I am sure!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Within the last several weeks I have developed the symptoms of sjogrens as well--dry mouth, dry nose, and dry eyes. I would recommend regular checkups with the eye doctor as sjorgrens can do eye damage and see what eye drops are recommended.
For the last several days I have started using biotene toothpaste and it does help. I also chew Spry gum and use Spry lemon mints (xylitol).
The pharmacist said to be careful with the prescription medications that increase saliva production, because they may throw off the balance of natural flora in the mouth.
I believe sjogrens is due to lyme, but what I find interesting is my mother has the autoimmune disease celiac. I wonder if that makes me more prone to this and if it why I am having trouble getting rid of Lyme. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8908 | From Illinois | Registered: Aug 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
" I believe sjogren's is due to lyme,but what I find interesting is my mother has the autoimmune disease celiac. I wonder if this makes me more prone to lyme & if this is why I am having trouble getting rid of lyme"
Very interesting point Hiker. I wonder along the same lines today also.
Sorry to hear about being so dry lately.The drops and toothpaste and gum are all good tips
Thanks and hope you can feel better soon too.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks luvs2ride
For the related links.
I am sure its lyme. Not sure which came first the chicken or the egg. I guess it doesn't matter since I have done just about all I can do for the lyme but am still moving onward in the direction of lyme remmisssion for sure.
And also thanks for the related yeast and breathing tip. Pretty sure I have the yeast on the run for now. Knock on wood - click my heels 3 times
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by 5dana8:
" I believe sjogren's is due to lyme, but what I find interesting is my mother has the autoimmune disease celiac. I wonder if this makes me more prone to lyme & if this is why I am having trouble getting rid of lyme" Very interesting point Hiker.
Dana, you just answered another of your problems: you HAVE inherited your Mom's celiac gene and are allergic to wheat and perhaps rye/oats/barley.
Have yourself tested for food allergies 95 items from Meridian labs. They did mine; that's how I learned I was allergic to gluten, wheat, cow's milk, egg whites, 3 cheeses, etc.
Reading the celiac book learned about inheriting disease from 1 or both parents. If you have KIDS, THEY TOO will inherit this sometime in their lifetime.
IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Dont forget some of the abx's we get on can also cause alot of the dryness symptoms.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey Bettty
I was just re-typing hiker's statement that her mom had an autoimmune disease celiac .
Thought it was interesting that her family genes may have predisposed hiker to having a hard time shaking the lyme. This makes some sense.
I was tested for celiac and came up neg. But thanks for thinking of me.
Treepatrol. I haven't taken abx for 4 months. I am on a drug holiday because of my stomach issues but am doing rife and some herbs.
The dry eyes I can live with. It was the other closey related lyme symptoms that closely resemble sjogrens that have me concerned like extreme fatigue,muscleee/joint pain, gastro problems and some neurological that may blurr between disease's.
But How much to know is lyme and how much is sjogrens's. I think only an LLMD would know for sure.
Was up late last night reading about sjogrens.
I have come along way in treatment with abx over the last 3 years for my lyme (God Bless my LLMD)and just don't have the energy to focus on a "syndrome" that may or may not be related to lyme. Was my thinking this morning.
Sorry for the temporary panic. I figure I have enough to worry about with my lyme and no energy to spare on a disease that has no treatments and very little diagnostic conclusions.
There are alot more sicker people-specially the newbies that need our feedback. So don't want to pull up my thread agian for replys.
Woke up this morning and decided to ignore the whole thing and just continue to concentrate on my lyme.
Thanks again for all your help,input and reassurances.I appreciate you guys more than words can say.
God Bless. And may we all find our paths to wellness
posted
hey dana- my name is allison and i have had lymes and sjogren's for 9 years. i was actually diagnosed with sjogrens at 17 yrs of age, before i was diagnosed with lymes.
however, i am positive the lyme triggered it.
i would not worry about having to take steroids. i have never taken them. you would have to be really really bad off for the doctor to give you steroids.
i have taken plaquenil for 7 1/2 years now and it seems to keep things under control. my joints get really sore if i miss even one dose. i use eye drops occasionally and drink lots of water for the dry mouth.
you probably know this, but if you use eye drops, buy the ones without preservatives. also, if the doc puts you on plaquenil, you will have to go once a year to the eye doctor for a field-of-vision test.
the side effects sheet for plaquenil looks terrifying, but i have never had any problems while on it. its a pretty safe drug.
all the symptoms do overlap and i have questions about that too. i've always had both, so how do i know what is causing what. even people with sjogren's struggle with brain fog.
i'm just waiting to see how much i improve on the lymes treatment and see what symptoms are left over. i don't know that i will ever know which symptoms go with which disease.
-------------------- "We imagine that when we are thrown out of our usual ruts all is lost, but it is only then that what is new and good begins. While there is life, there is happiness. There is much, much before us." -Pierre, War and Peace Posts: 14 | From USA | Registered: Apr 2006
| IP: Logged |
posted
Hi Dana....just stopping by to say I'm sorry you're dealing with one more thing. I've often wondered if I have sjogren's as well. I have all the symptoms, but have wondered if my dry mouth is simply from the Lyme meds??
Of course that may not explain the other symptoms... stupid Lyme!
Hang in there. Aren't you glad you have Lymenet for support? These folks are awesome!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Eek!]](eek.gif)
![[cussing]](graemlins/cussing.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic