posted
My ten year old daughter came down with a fever followed by all over joint pain - knees, ankles, fingers, neck etc... She was tested for Lyme and parvovirus along with Epstein Barr. We live in Connecticut and my concern is of course that it could by Lyme, with a false negative. The pediatrician however, seems to think that with Lyme it is very unusual to present with all over joint pain. Rather, the presenting joint pain is in one limb or area. Please tell me, have any of you presented with ALL OVER joint pain or do you know of anyone with Lyme who has? We have an apt. with a rheumatologist and I think I will take her for a second opinion. Thanks in advance for any info!
Posts: 144 | From Connecticut | Registered: Sep 2006
| IP: Logged |
posted
I started with joint pain in one joint at a time...but it progressed a few months later to include several joints at once. Strangely enough, the only joints that never bothered me were my elbows!
When my bizarre symptoms started, I began keeping very detailed records of how I felt, what hurt, etc. It's in a spreadsheet but you could just do it Word just as easily. Just make it easy to print out copies to give the doctors. That's what helped the doctors realize I wasn't just a hypochondriac!
Good luck...and be very diligent for your daughter's sake!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
ALL OVER joint pain is very much a recognised symptom of Lyme disease!
Almost all the literature discusses flu-like symptoms that include joint pain. I dunno about you, but I never had a flu that presented in ONE joint. Your WHOLE body hurts. This is because the disease can disemminate into the body within HOURS.
I have ALL OVER joint pain and all over muscle pains too. I test CDC positive, if it matters (which is shouldnt) and had the rash and the tick still attached.
Your daughter really should be seen by a LLMD. A lyme Literate physician. It is expensive and there are often long wait times, but the wait is worth it. It is her life we are talking about.
I am soo soo sooo angry that this doctor would hold up treatment in a possibly EARLY and treatable case because he got his facts WRONG!
False negative test is highly possible.
If you need help finding a doctor, please go to the seeking doctors board and start a thread there.
Your best weapon right now is to go to the ILADS site and READ READ READ and then print print print out material to take with you.
I am so sorry to hear about this. best, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Pauline
Do you know where her lyme test was done?
The standard lyme tests are as much as 50% accurate. You may as well flip a coin.
Here are reasons why you can still have lyme & test CDC positive:
I had joint pain along with fatigue as my first lyme symptoms. Started out in my neck & spread.
I went to a rheumie who told me I had arthritis even though my blood tests for neg.
I went down hill. I didn't know at the time I had lyme. I also tested CDC negative. I have been treated over the years for lyme and gotton in remission many times. If I had listened to my rhemie I would be in a chronic rehab center somewhere.
Hoping you can find a good doctor and your daughter can feel better soon
take care Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
I had (and still have some) joint pains everywhere. Back included.
The first pain started on my left knee but I got elbow, hip, ankle, and vertebral column pains soon after.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
| IP: Logged |
posted
Thanks of all of your help. It's been almost a month now since her first symptoms appeared. I am so mad at myself for listening to the pediatrician! Having had Lyme disease myself, you would think I would know better. Need to find a specialist fast!
Posts: 144 | From Connecticut | Registered: Sep 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I just wanted to add I was 10 when I got sick and all over joint pain was one of the first symptoms I had.
posted
My daughter ten and turning eleven soon definitely complains about all over joint pains.... negative too, I do have lyme but my husband somehow was in denial for several months when she was going down the hill till she landed at the ER with heart involvement.... the dark circles around her eyes are the most visible and annoying symptom. It is easy to think "it is not lyme".....or "lyme is not the only disease in the world" specially if it ine of our kids....
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
CHECK FOR BARTONELLA.
I think that bart is documented as being more prevalant than Lyme in the east.
Was ther a history of urinary tract infection prior to the problem? If so check out reiters sydrome (cause unknown, but may be bacterial in origin also)
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
posted
My 10 year old daughter was diagnosed when she was 8 and had all over joint pain. She was tested through Igenex 12/04 and had a positive test for lyme.
Last April she was tested for Bart and the results were negative which doesn't mean she doesn't have it. This disease is a clinical diagnosis..many people do not ever test positive.
I'd take your daughter to an LLMD ASAP.
Posts: 738 | From Colorado | Registered: Oct 2004
| IP: Logged |
posted
I have all over joint pain, muscle aches, and severe debilitating fatigue. usually in am is the worse. Get your daughter to llmd. Good luck. Keep you in thoughts and prayers.
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic