posted
I am 34, I was diagnosed at 6 with Juvenile Rheumatoid Arthritis, now the last 8 months I have neurological symptoms and have been checked for FM, MS,ALS, now I will be seeing a LLMD. I guess there were kids from 1975-1982 diagnosed with JRA when in fact it was Lyme, is there anyone out there that was misdiagnosed like doctor thinks I may have been??
Posts: 4 | From Ohio | Registered: May 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I was misdiagnosed in 1984 with CFS. I found out in 2005 that it is actually lyme and was lyme all along.
People are misdiagnosed all of the time. I'm still soooo mad about this and I think I always will be. Twenty years were stolen from me.
I feel your pain!!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
what are your sypmtoms?
Posts: 4 | From Ohio | Registered: May 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Lots of people are misdiagnosed or not diagnosed at all.
I got sick when i was 10 (fall 1987). Then the closest thing to a diagnosis i recieved was i was faking, it was stress, it was viral and would go away, and it was all my fault i was sick.
so i finally got diagnosed with lyme in 2000 (at age 23) by the time i got treatment i was disabled.
I am glad that you are seeing a llmd. there are also other infections (called coinfections) that can be present with lyme.
I had one which we didnt know was present for quite awhile after my lyme diagnosis.
posted
I have had Lyme in my system since at least 1975 too (born in 1969). I was never diagnosed with anything, just a life of constant weird medical conditions, fatigue, and lots and lots of coffee.
Anyway, I developed full blown neuro lyme in 2003. Was doing really well but have relapsed since I stopped formal treament last summer, so now I am starting back on antibioitics, among other things.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
Unregistered
posted
welcome tammy; so glad you found us!
yes, my late Dad was NOT diagnosed correctly in 80 YEARS!!
he too started out like you with juvenile arthritis at age 7; twice was paralyzed from his neck down by STRANGE ILLNESSES; and a lifetime of unbelievable illnesses/symptoms .... ALL lyme related now that i've seen/read the LONG symptoms list!
he was never tested for it but also had BLASTOMYCOSIS in 1955; another CO-INFECTION OF LYME!
WELCOME, would you like a FREE copy of my newbie package of 120 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
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also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I think you will find that most of us here were misdiagnosed with something other than Lyme.
Only some members were fortunate enough to live
In an endemic area and have local docs familiar with Lyme.
So to answer your question. You are in excellent company.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
The Intervention TV show had a 23 year old who was addicted to pain meds because of JRA. It said on the screen at the end that when she went to rehab they found and treated her for Lyme.
Posts: 93 | From Midwest | Registered: Apr 2008
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quote:Originally posted by Connieaag: The Intervention TV show had a 23 year old who was addicted to pain meds because of JRA. It said on the screen at the end that when she went to rehab they found and treated her for Lyme.
Wow!! I'm so happy she got dxd!!!
Tammy... read my story below. MANY here were misdiagnosed or undiagnosed.
posted
thanks for the youtube site, that was great!!
Posts: 4 | From Ohio | Registered: May 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
My wife was told to see a Rheumatologist after three negative Lyme tests. She was bit by a Deer Tick and we knew that it was Lyme. I treated her for Lyme and she gradually got better until she is normal most of the time now.
Bad joint pain was one of her main symptoms. This went away also with treatment. Lyme rage also came later on. This is a pretty distinct symptom of Lyme infection.
Whether it is Lyme or not, it most likely has a bacterial cause. You can treat the symptoms alone or go after the cause. I think going after the cause is a better solution.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Connie,
You are a fellow Indiana'n as am I.
The address says PA but I have moved to Indiana. Good to know there's a kindred spirit.
I saw the same show. I was struck by how crappy her family was to her. My daughter watched it with me and she wondered what was physically wrong with her.
I thought to myself that it was Lyme...sure enough, it was.
But what I thought was the most disgusting was that the young women in the show after being treated for Lyme was given a knee replacement.
You wanta talk about misdiagnosis. What about underdiagnosis where they slice and dice you without properly addressing your lyme issue.
You know she's still a basket case....she has to be. Not fully treated, now with a bumb knee, at her age. How sad!!!!!!!!!!
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Alv
Unregistered
posted
Yes it was me.My knee -right one was in pain and my headaches started at 10 years old.My right knee would crack crazy .
Now I recall the time I got reinfected.I had painfull knee pain.Than painful right hip pain.Than painful rihgt arm pain and than numbness and a hit wave that came from head to toe on the right side.
Nobody was listening and nobody had a clue.
Reinfections and new with coinfection-brought it to CRONIC late stage neurolyme.Band 30 is +++.
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