GEDEN13
Frequent Contributor (1K+ posts)
Member # 4151
posted
have any of you been dxed with lyme arthritis ,by surgery,done by an orthopedist ?
if so , what were you treated with ? i only need to hear from those dxed with lyme arthritis,by an orthopedist.not by blood test. ei: w.b ,elisa....
this must be a visual dx ,along with the bone scraping of the arthritis off the bone.
please don't pull an answer out of the air.you MUST have had surgery ,for this dx.... , gary
p.s. yes , i am positive lyme on the w.b...
Posts: 1108 | From PA. | Registered: Jun 2003
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i had arthroscopic surgery on both knees-he took pics inside and after told me he "there was hardly any cartilage left" what was there was "a mess and stringy" and he "cleaned it up as best as he could" but i was going to need knee replacements.
he said to use cosamine ds and put the surgery off for as long as possible because they keep improving the surgery. my mri used the words"essentially obliterated" to describe my knees.
the doc did not use the words lyme arthritis-he dx me with osteo arthritis and said he didn't know if it was caused by lyme. we tested some tissue on one of the knees and it came back negative(but i don't know if it went to a good lab)
these surgeries were 5 and 7 years ago. sometimes i am pain free and the rest of the time it is bearable. i walk between 30-60 min a day on hard sand(can't walk on pavement) i also changed many things: do not do stairs, use handicap parking sticker, shop in small stores, no jumping jogging, etc, NEVER TWIST A KNEE-ON ICE OR SLIPPERY RUG ETC-i know that would land me right back in the hospital.
i take 2 cosamine ds in the morning and one at night. if i try to cut that down or switch to a cheaper brand my pain comes back and i can't do my 30 min walk. i weigh about 200 lbs.
i've been confused about the difference between lyme arthritis and osteo arthritis for awhile. i think lymie tony on here had knee problems. maybe he will answer the post.
also-both knees had some steroid injections way back before i knew how bad they were.
oh yeah-i was dx in 98 and had had lyme 15-20 yrs by then. did high dose oral abx for 3 yrs and got rid of fatigue and foot pain. i also have the bad gene that makes you get arthritis when you get lyme. my thumbs are also very bad now and need surgery. and my lower back has severe facet arthritis.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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GEDEN13
Frequent Contributor (1K+ posts)
Member # 4151
posted
up....
Posts: 1108 | From PA. | Registered: Jun 2003
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What is the name of the bad gene that you get arthritis when you have Lyme? Is there a test for it?
Posts: 649 | From United States | Registered: Dec 2003
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes there is a test and you can search it here-there are two of them-the test is expensive...others on here remember it-i'm too foggy
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
i cant believe i found it shouldn't givve up on this old brain yet!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Topic: HLA-DR4
had to copy and paste twice-
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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GEDEN13
Frequent Contributor (1K+ posts)
Member # 4151
posted
ip
i cannot use cocsamine,well i mean it would be a waste. i have no synovial lining in my right knee.was all destroyed (eatin') by the (my ) keet's..
i cannot make synovial fluid.so now, i am bone on bone. very painful...thankyou for the info...gary
Posts: 1108 | From PA. | Registered: Jun 2003
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
think this is the part you want:
The post-infectious inflammatory hypothesis also is supported by several lines of evidence. For example, patients with Lyme arthritis who carry the HLA-DR4 or DR2 allele are more vulnerable to developing a chronic antibiotic-resistant arthritis. Indirect evidence exists to support molecular mimicry as at least one possible explanation for persistent symptoms. For example, the flagellin protein (on the tail of the spirochete) can generate antibodies that cross-react with myelin basic protein, thereby contributing to axonal dysfunction. Finally, remnants of pieces of the spirochete may result in a persistent activation of the immune system, causing the production of interleukin-6, tumor necrosis factor, and nitric oxide. These cytokines produce fatigue and malaise, two of the more prominent symptoms experienced by patients with chronic Lyme disease.
It is reasonable to assume that some patients suffer from persistent infection whereas others suffer from immune-mediated post-infectious damage. Until more is known about the factors which identify who may respond to repeated treatment and who is unlikely to respond, clinical decisions will be based on physician preference rather than objective data. Longer vs shorter duration placebo-controlled antibiotic trials need to be conducted with long-term blinded follow-up using objective markers. Until then, the optimal treatment of the patient with chronic Lyme Disease will be unknown. At this point in medical history, decisions about the treatment of the patient with chronic Lyme disease need to be individually shaped by the clinician's experience, the patient's clinical profile and history of antibiotic responsiveness, and the emerging medical literature.
i can't believe myself today...i'm turning into a tincup. he he he
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
part of why i am telling you this is because the ortho docs(one knee spec one hand spec) tell me i am bone on bone too...they said i need replacements...5 and 7 years ago!!! this based on what they saw inside and the xrays.
BUT..i have kept myself going with cosamine ds---i obviously don't benefit from telling you to get this brand in any way---but for what ever reason i have found it has to be this brand-the one they did the double blind study on-it is in a purple and white box/bottle.
when i try to switch from this i go down hill with in days-which also doesn't make that much sense cuz supposeablly it takes a month or more to build up in your system and then you are supposed to be able to cut back...but i cant cut back...i feel it with in days.
i know its not supposed to work...but it does---remember i also changed my daily life stuff to be easier on the joints-but 5,7 yrs is a long time.
the doc says he can't believe i am still walking
what has really confused me (and it doesn't take much these days) is after my surgery 2 weeks ago i took ketorolac-a strong nsaid-and it totally took all my pain and dizziness away. (same thing happened 2 yrs ago after another surgery)
i'm thinking that means my problem with both joint pain and dizziness is inflammation...but i don't get how the xrays and camera can show so much permanent damage and then by reducing inflammation i can be pain free...
others on here have tried to help me with it but my brain is so foggy now i'm not getting it. i did write to my llmd since i won't see him til 2/28 and asked him about it . i will post his answer when i get it. hopefully next week.
til then i would suggest you remember the docs-especially non-llmds really don't understand lyme and it might be worth trying the cosamine ds---it might take longer for it to kick in than for normal people and you might need a slightly higher dose-but it clearly woorks for me. good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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