I am still trying to get into an LLMD. Might need a referral for one.
Question is, with migrating knee pain in chronic Lyme Disease, is there typically swelling present? Both an ortho and my pediatrician are dismissing possible chronic Lyme Disease due to the absence of swelling in the joints and normal sed rates.
Have read that sed rates are not reliable indicators with Lyme, likewise it stands to reason swelling may not have to be present.
Posted by Lisianthus (Member # 6631) on :
Sounds very familuar to me. I always had very painful knees but NO swelling. I think its a myth that you have to have knee swelling to have Lyme.
My HMO doctor said the same thing to me when I came to see him about getting a lyme test. He said "you probably don't have it because you don't have any joint swelling." But he did give me an ELISA just to prove I didn't have it.... What a crock!
Alls it proved to me is that HE didn't know anything about Lyme Disease!
Your on the right path by getting an LLMD. I will PM you with a good LLMD near you.
Lisi
Posted by Sue vG (Member # 3143) on :
Knee pain has been one of my most frequent symptoms, but it's not pain IN the knee, it's painful swelling in the tissues (ligaments, tendons) AROUND the knee.
I can move around fine, but if I bump my knee or try to kneel, it's like kneeling in glass shards.
I think that part of the problem doctors have in helping us (those few that are so inclined) is that lyme symptoms are not described in their differential diagnosis lists, nor by their patients, with the proper degree of specificity. "Knee pain" is simply not specific enough.
Posted by nancyb (Member # 10154) on :
Knee and ankle pain are one of my daughter's worst symptoms.
When I asked the pediatrician about Lyme she immediately dismissed the possibility because my daughter never had any swelling. I then immediately dismissed her!
Our LLMD does an interesting test on the joints. He puts the back of his hand on my daughter's calf and then on her knee. The calf should always feel warmer because of the blood flow but my daughter's knees are always warmer.
He was the first doctor out of many to do this and he was very surprised to be told that. He said it was basic med school stuff and they are watched for it while doing their examinations.
Posted by duke77 (Member # 5051) on :
Its a common myth perpetrated by most of the ducks that your knees will be swollen with Lyme. One of the first docs I saw was a neurologist he said "you don't have Lyme your knees would be as big as basketballs." Wow, profound knowledge how many people have you ever seen with or without Lyme with knees swollen the size of basketballs? My knees bother me often but they were never swollen.
I had a P.A. tell me if you think its Lyme just get a sed rate test. I just looked at her evil and said I see now all those expensive specialized tests for Lyme are not needed. A sed rate test is all I need thank you for that. I had an elevated sed rate once in my life and since then it is usually around the 3-5 range very low.
Posted by sixgoofykids (Member # 11141) on :
I had knee pain so badly that I could hardly bend it, but never have had swelling.
Posted by Geneal (Member # 10375) on :
Fiction for me.
I also have painful ligaments around the knee that hurt like the devil to touch, but no swelling.
No swelling in my hips or fingers either (I have tons of joint pain in those places).
Good luck.
Geneal
Posted by twopuggles (Member # 10971) on :
I had an infectious disease doctor tell me the same thing. It is bs. Among my worst symptoms was pain in my knees and calves. When my LLMD examined me he felt fluid in my knee, but no swelling.
Posted by bubbear (Member # 8976) on :
It's fact for me...my knee and elbow swell up like a basketball....not saying yours is not Lyme...I believe it is different for each person...
Posted by SouthernCO (Member # 11167) on :
AJM,
In the Taber's medical dictionary I have (copyright 1993) Lyme arthritis is described as "polyarthritis WITHOUT SWELLING".
I have had so called Dr.s tell me that my knee pain could NOT be arthritis because there is no swelling.
It would behoove these geniuses to read their own dictionary.
Posted by Beverly (Member # 1271) on :
AJM
I knee pain also, with swelling and without it, but LLMDS take the whole picture in all of your symptoms, not just knee pain. I never saw a regualr doc for my joint pain even though it was bad, I just lived with it.
Let us know how it goes when you get to a LLMD.
hugggsss to all... Posted by timaca (Member # 6911) on :
I had normal sed rates, pain in my knee, and NO swelling. I have lyme. (Unfortunately, I think orthopedic doctors see lyme as a red hot swollen joint).
Orthopedic doctor gave me a steroid shot to my knee which activated latent lyme in my body. I started to fall apart big time. He didn't have a clue why.
He did knee surgery on me, giving me IV vancomycin. I ended up with a Jarisch Herxheimer reaction which had me in full body nerve pain crying in his office. He didn't have a clue.
Then my shoulder started to hurt A LOT as did my hip. He still didn't recognize it. He just wrote a script for PT.
Print out Dr. B's guidelines where he talks about AVOIDING STEROIDS and see if your orthopedic doc has a clue about steroids and lyme. Mine sure didn't.
I'd love to talk to a sympathetic, caring orthopedic doctor who would hear my story and then begin to educate the orthopedic community. If your's turns out to be such a one, let me know. I'd love to talk to him/her.
Timaca
Posted by Penn92 (Member # 9207) on :
My daughters and I have all had knee pain but never swelling.
Posted by Nebula2005 (Member # 8244) on :
My knee is classic Lyme--stiffness , lots of swelling (my whole leg), heat with no redness. Goes away, comes back.
After five years of symptoms, normal x-rays and MRIs, was finally told I had oseoarthritis.
Ha ha I don't have Lyme Disease. Posted by duke77 (Member # 5051) on :
quote: After five years of symptoms, normal x-rays and MRIs, was finally told I had oseoarthritis.
That is strange the xrays and MRI were normal but they think you have Oseoarthritis. OA should be seen very easily with an xray or an MRI. WIth OA there is definite damage to bone and cartilage.
Posted by wilsongal22 (Member # 11210) on :
Hmmm...my orthopedist doesn't take me seriously becaus eI have serious pain in my knees but NO swelling! I have pain in most of my joints, but NEVER swelling. Of course, I still don't know what is wrong with me. So, it could be coincidence. So, does that mean that people with lyme don't necessarily have to have joint 'swelling'? Thanks Christi P.S. If you would like to read my story it is 'Christi's Story...Please Help'...Maybe you know what is wrong with me...Thanks
Posted by SouthernCO (Member # 11167) on :
Christi,
"POLYARTHRITIS WITHOUT SWELLING" is the description of Lyme arthritis in my Taber's Med. Dictionary, copyright 1993. It may be a misprint, but that's what it says.
Can anyone verify this?
Thanks, Dave
Posted by ESG (Member # 4816) on :
my daughter has debilitating knee & ankle pain and no swelling, nothing showing up in Xrays, no tenderness, no redness, etc. etc.
LLMDs never thought this was odd, regular docs dismissed her.
ESG
Posted by Robin123 (Member # 9197) on :
Just read the posts. Looks like we're all different.
I have major swelling going on around a knee and it hurts alot. On ice and also I use a red light machine which I think increases circulation and takes down pain.
Also swelling in ankle tissues and Achilles tendons.
Lyme ain't no picnic...
Posted by SouthernCO (Member # 11167) on :
It's a given that swelling may or may not be present. It sickens me (even more than I already am) that the medical establishment can get away with misdiagnosing Lyme because there is no swelling. If only LLMD's know facts like this, it is no wonder that misdiagnosis is the rule.
I'll be taking my medical dictionary to my next PCP appt.
Posted by randibear (Member # 11290) on :
i have a lot of left knee pain but i also tore the cruciate (sorry for spelling) ligaments in that knee.
i fell face forward on the concrete in my garage and really messed up my knees.
that is where the lyme has settled. i also have a damaged lower and upper back and it's there too.
Posted by SouthernCO (Member # 11167) on :
randibear,
So sorry to hear of your fall and the injury to your knees. Your Lyme in the low back sounds similar to mine. In 1992, the initial infection hit me in my ruptured disks with pain like a burning knife for 2-3 weeks then returned to stay 2 years later. But my worst pain by far is bilateral on the outside of both knees radiating down the sides of the calves to the feet.
So I can somewhat empathize with your ordeal.
Thanks and best of healing to you, Dave
Posted by Laurie (Member # 159) on :
I have knee pain AND I've had swelling AND a high sed rate AND a bull's eye rash -- and lots of other things -- and still ran into a plethora of doctors who said nope, ain't Lyme. Discouraging isn't it. Posted by csperanza (Member # 9613) on :
fwiw, i have had sporadic knee pain with no swelling. sharp pain in the very center of the knee, making it painful to put weight on it. it never lasted more than a few days and sometimes goes from one knee to another. i saw the tick and had the bull's eye rash, so... carol
Posted by merrygirl (Member # 12041) on :
Another test for inflammation is C- reactive protein. It is not specififc, but mine is very high and climbing. My SED rate is completely normal.
My LLMD said this was not a good sign (didnt have him elaborate, wish I did)
maybe get this test done?
Also my knees hurt so bad. No swelling.
I take Piroxicam a prescription NSAID. It is great.
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