posted
Hi, I am new here and so far have only been recently diagnosed with Fibro and OA. I really am thinking that it might be Lyme.
I never had a rash and don't remember a bite. But have have a lot of pain, arthritis that migrates and numbness in my face and nose that comes and goes. I talked to my doctor last week about it and she feels because I have some symmetrical pain, that it cannot be Lyme.
I guess my question is.... can someone define Lyme arthritis to me?
I have a lot of cognitive difficulties, sometimes I can't get the right words out or the words come out wrong. I have read up a lot on both conditions and realize that the symptoms overlap.
I thought my doctor did a Lyme test last year, but on my latest visit, she could not find the results. They use Quest labs.
I have found a doctor nearby(I live in Maine) who does diagnosing of Lyme and I wonder if anyone thinks I should see him? I also realize that at lot of tests are negative too.
Thanks so much for your help. Mindy
Posts: 12 | From Maine | Registered: Feb 2006
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posted
Mindy, I had 4 negative Lyme results from Quest over 2 years. If the Doctor you've found in Maine uses a different lab, then you should definitely see him, if you suspect it might be Lyme.
I finally got a positive result from a lab my Doctor in Maine uses. My younger sister who thought she had fibromyalgia for 15 years got a positive Lyme result too after my experience.
It's worth the $ to get answers, at least I think so.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Mindy,
There are a lot of myths and misunderstandings about Lyme in the medical community. You can have Lyme with a negative test. I had many, many negative tests before a positive with a better lab.
The doctor who diagnosed me with fibromyalgia said I couldn't have Lyme because I had pain on both sides too. I swear I remember a doctor 15 years ago telling me it couldn't be Lyme because I didn't have pain in enough joints.
What is Lyme Arthritis? There is no easy answer. We all have differing manifestations. My first real symptom was severe inflammation and limited movement/pain in my left knee. This lasted for years. I never had any damage common with OA.
I then had pain in varying places for many, many years that I didn't realize was abnormal.
My largest symptoms are inflammation of muscles and tendons, not the joints themselves. But there was some fluid in my joints that my doctor could detect on examination.
OA and Fibromyalgia together suggest to me there is something causing this. Whether it is Lyme, I can't say. But below is a check-list of symptoms commonly used. It may help you.
SYMPTOM CHECK LIST
This is not meant to be used as a diagnostic scheme, but is provided to streamline the office interview. Note the format- complaints referable to specific organ systems are clustered to better display multisystem involvement.
RISK PROFILE (PLEASE CHECK) Tick infested area__ Frequent outdoor activities__ Hiking__ Fishing ___ Camping ___ Gardening ___ Hunting ___ Ticks noted on pets ___ Do you remember being bitten by a tick? No__ Yes__ When? _________ Do you remember having the "bull's eye rash"? No__ Yes__ Any other rash? No__ Yes__ Have you had any of the following? (CIRCLE ALL YES ANSWERS) 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hi, Thanks so much for the replies and the great info. I will definitely make an appointment with the other doctor. Mindy
Posts: 12 | From Maine | Registered: Feb 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Mindy, Good idea to see that LLMD. They dx'ed me with 'just' OA too. It is wear and tear arthritis, everybody has it, go home and just grin and bear it!!
Also they said, dont worry it doent spread. BUT they couldnt tell me why it was bilateral. When it DID spread they didnt believe me, said I HAD to be imagining it.
When they finnally decided I was right they called it some other name that I could never research.
My belief is they had a throw away name for it. Finnally when I pressed them enough they called it 'early onset arthritis' and said 'some' people get that for unknown reasons.
This is all prelyme to be known for me.
NOW I know it was lyme all along and when I ask the ortho docs who was dxing me they all say, "Well no wonder, your regular physician should have diagnosed 'that', its not in my area of specialty."
Okay, if weird arthritis isnt your area of practice of ortho docs, what is?? I didnt ask them THAT, but sure felt like I should!! Hey doc, ever hear of reactive arthritis???
So now I was left for years undiagnosed too long and now cant regain any progress from treatmnet.
Please dont do as I did and not get treated in time and be hopeless and helpless.
My gut feeling is you DO have lyme by symptom dx, so get treated and see what happens. If you improve OR herx you know proof positive you have it and need alot MORE treatment.
IF I had the choice I would skip the tests altogether and just go with trial treatment!! The tests are to inaccurate!!!
And doctors hang there hats on tests so could be counter productive for YOU!!!
Just my opinion because I am --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Mindy, Forgot to add--most people define lyme arthritis as migrating waxing and waning and various areas of pain.
My OA destroys one joint after another and they never get better.(once they go south) By x-ray it is no wonder because ALL of the cartilage is gone 100% and instead I enjoy bone spurs and cysts instead.
NOBODY has been able to explain that phenom to ME!!!
My help has come in the form of finding 2 Citrical, 2 good magnesium suplements(NOT WAL-Mart brand, they are worthless) and 2 Glucosomine-Clondritin(sp), ,, These help more than ANYTHING else except for PAIN meds!!!
Wish I had happened across this combo sooner, might have stemmed the damage sooner!! Try it and see if it works for YOU.
Doc said when I was taking tons of stuff "IF it helps you fine, if not quit and try something else, everybodies different"
I would try it at least 4-6 months before quiting and trying something else! Expecially the glucosomine-Clond.
As long as I take glu/clon. my thumbs dont pop out of joint every ten minutes, Thats got to be an improvement in itself!!!
AND I can write a check without the popping of my hand bones in my hands with every change of direction of the pen for EVERY part of EVERY letter of EVERY word I write. HTH--from --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Just Don, Thanks so much for info and the reply. I think I will definitely see the other doctor and see if they can start treatment and see if it helps any. My regular doctor will not consider it without a positive test. I think that she is not "up" on the current info. on Lyme. Again thanks for the help. Take care. Mindy
Posts: 12 | From Maine | Registered: Feb 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Mindy,
One other thing. You want to make sure this Lyme doctor really treats Lyme...meaning doesn't just give people antibiotics for 3 weeks and say's you're cured.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I agree with Aniek. There is only one practice in Maine these days that I would call "Lyme literate" that I know of. It's in K**nn*b*nk.
If that is where you are going, fine. If not, you may have lucked out and found a doctor who is not affiliated with the International Lyme and Associated Diseases Society (ILADS), but who treats with longer courses of antibiotics anyway. Ask how he treats for Lyme, and if he is ILADS-affiliated.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Yes! Please get tested, preferrably through Igenex labs in CA. The dr you are going to see will probably be willing to test through them if he is a real LLMD.
I was also dxd with FM 25 yrs ago, only to find out 5 1/2 yrs ago it was really Lyme disease, which I've had most of my life.
Don't delay!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i pmed you some info-but i still wish someone will answer your question...WHAT IS THE DEFINITION of lyme arthritis...is it just migrating joint pain that goes away with abx????
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I have Lyme induced Rheumatoid Arthritis. I too was confused about the connection.
I asked an LLMD about it and he said:
"What is Rheumatoid Arthritis?" "It isn't a bacteria or a virus, it is just the name of a condition". "Lyme is a bacteria that is proven to produce joint pain, muscle pain, and a large assortment of other ills."
I am researching RA since being diagnosed with it and there is MUCH RESEARCH, solid research of a bacterial connection.
The book "Arthritis Breakthrough" by Harry Schammal includes "The Road Back" book by Dr Thomas M. Brown. Dr Brown was the head of a 50 year research team that studied the bacterial effect of RA. He was successful in treating RA with abx from the tetracycline family with minocycline being the preferred drug.
His book talks at length about Lyme Arthritis which he claims is identical to RA. He believes RA is caused by mycoplasmas and when treated appropriately the RA is put into full remission. His research resulted in a 70% success rate.
He feels the 30% who do not respond satisfactorly have coinfections from sprirochetes and/or strepptochaus (sorry about the spelling) In those instances he recommended adding Ampacillan. Did you have strep throat a lot as a child?
He also thinks most cases of Fibromyalgia are really Lyme disease.
If you have Lyme arthritis, it is well worth reading this book. I have 4 LLMD's who say their Lyme patients who developed RA were healed of the RA once the Lyme was resolved. I am very hopeful this will be my story.
-------------------- 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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