Does anyone here have any info or links regarding post lyme syndrome or lyme arthritis.
I would greatly appreciate - I would like to send it to the ID duck that told me I have post tramatic stress disorder.
Thanks
[ 11-05-2010, 11:09 PM: Message edited by: sixgoofykids ]
Posted by Lymetoo (Member # 743) on :
Well, there's no such thing a Post Lyme Syndrome, so I don't know if you could find papers from OUR SIDE on that.
Try Pub Med on the lyme arthritis.
Bringing this to the top for help!!
Posted by TF (Member # 14183) on :
"Post lyme syndrome" is what non-lyme literate doctors call your condition after your lyme has been treated for 30 days and you still have the same symptoms you always had.
They don't want to believe their 30 days of meds FAILED, you know. So, they say that your body is still acting as if the lyme bacteria are there and that your body will eventually calm down and these symptoms will just go away!
They have come up with this theory (it is not proven) and that's what they stick to.
Here is a link the ID doctor might take seriously because it was not done by any of our lyme doctors. It is an interview with one of "theirs," instead. It mentions arthritis a number of times. It is just a general lyme discussion:
It should be common knowledge that lyme causes arthritis symptoms. Any ID that doesn't know that has something seriously wrong.
Really, I would not waste my time trying to educate an ID doc because they, as a group, have their position on lyme firmly established and they have not budged for 30 years, so you giving him any articles at all will not make a hill of beans difference. The ID docs have too much to lose to admit they were wrong about lyme disease at this point in time. They cannot be "educated" in other words, due to other factors.
Sorry this happened to you. We all have our horror stories to tell regarding ID docs. And, I seriously mean horror stories.
Posted by onbam (Member # 23758) on :
PLS is BS. will pm.
Posted by july (Member # 10469) on :
I found this on the CDC website.
"Most cases of Lyme disease can be cured with antibiotics, especially if treatment is begun early in the course of illness. However, a small percentage of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics. These symptoms can include muscle and joint pains, arthritis, cognitive defects, sleep disturbance, or fatigue. The cause of these symptoms is not known. There is some evidence that they result from an autoimmune response, in which a person's immune system continues to respond even after the infection has been cleared."
I know ID-iot docs will say there is no evidence that supports "chronic lyme", but the rheumetologist that I saw said it was possible to have a lyme arthritis, and this was at the same clinic.
Anybody else with info? I realize it won't do any good to try to educate them. I think I just need it for myself.
Posted by sixgoofykids (Member # 11141) on :
Then tell him you have Lyme arthritis. Are you seeing an LLMD? Your LLMD should be able to treat this condition. Someone who doesn't believe Lyme is chronic and believes it's "post Lyme syndrome" will not be able to adequately treat it.
The CDC's site is basically saying there is no such thing as chronic Lyme, that it's some syndrome after treatment that they don't know the cause of.
Posted by july (Member # 10469) on :
I had seen a neurosurgeon a couple of months ago as my mri showed degenerative disc disease and a bulging disc that is pushing on my spinal cord. As he was examining me, he was curious to know why I had so much pain in my entire body and why I have involuntary body jerking and why my fingers and legs move on their own. He talked with the ID doc (that I had seen in 2008) as the neurosurgeon wanted a spinal tap done to rule out some other things and to see if there was possibly lyme bacteria still in my body. The ID doc told him that there is no chronic lyme and that I probably had post traumatic stress disorder. End of that place.
And YES I found a llmd 2 months ago. He's probably the only doctor that has ever listened to me.
Posted by littlebit27 (Member # 24477) on :
I was so angry the day this stupid "LLMD" (was said to be LL) told me I had "post-lyme syndrome."
Basically means your crazy and it's all in your head...which we know it's not.
Posted by sixgoofykids (Member # 11141) on :
Sad that other doctors can see a patient has Lyme but an infectious disease doctor cannot.
Posted by sprite8 (Member # 28259) on :
sorry you had to go thru that. it really makes me angry too. i have had simmilar situations.