posted
We're aren't sure who to trust right now. My daughter was DX with Lyme 2 1/2 year ago, she was 2. She had a septic knee, fevers, etc. She was treated with IV antibiotics initially, then orally for two years: amoxicillin, azithromycin, rifampin. She was also DX with Bartonella. She went off her antibiotics about 8 months ago and withing 6 weeks symptoms appeared that had never appeared before: full leg pain and she didn't want to stand. Her pediatrician referred us to a rheumatologist to see if anything else was going on and they DX her with juvenile Rheumatoid arthritis. They put her on Naporoxen and she responded really well, and has been pain free for two months. Well, this past week, after being very sick with a stomach virus two weeks ago, she started complaining of terrible leg pain and didn't want to walk again. I've upped her dose of Naproxen, but she is still exhausted, irritable and in pain. Normally, we would go see our LLMD, but he is leaving his practice and not available. My question is this: Do we search for a new LLMD? Do we return to the rheumatologist? Is this Lyme? OR JRA? After reading some research, I'm wondering if it is Lyme and maybe she should go back on meds and add Flagyl? Do kids do OK on Flagyl? This battle is never ending.
Posts: 4 | From United States | Registered: Mar 2009
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My children both took flagyl..
It doesn't taste too hot, but we got through it.
One was 4 and the other 5 when we started treatment.
I would find a LLMD.
Do you have Lyme?
Just curious. I guess I was thinking it would be hard
To diagnose in a 2 year old unless she had a tick attachment
And a bulls-eye rash.
I guess I believe a Lyme Literate Medical Doctor
Would look at all possibilities.
Not just possible JRA.
I hope she gets to feeling better soon.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Did you know that lyme disease was first discovered in Old Lyme, Connecticut when a large number of children were suddenly diagnosed with juvenile rheumatoid arthritis?
That's the history. With that history, I would start looking for a new lyme doc for your child. The so-called lyme arthritis most often attacks the knee. The pain usually comes and goes. So, it may be that the treatment you have given your daughter has not done a thing. It may be that the lyme disease is just coming and going in her knee as is so characteristic of lyme.
Here is a sample website that mentions the history of the discovery of lyme disease:
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm not a child, but when I was going through my five years of misdiagnosis's, I had the RH Factor test run and I too tested positive for that.
My Rheumotologist felt at the time that I had fibromyalgia and myofascial pain syndrome but felt the Rheumotoid Arthritis test was a false positive.
Later, I found out it was lyme and co's and I don't think my Rheumotologist understands how my fibro symmptoms are going away with treatment.
He understands I'm treating Lyme and wasn't happy when he found out my LLMD had me getting a port, but I figure if I can get rid of the positive blood work for R.A., not be suffering from the fibro or myofascial pain, that perhaps I can sway him over to take lyme more seriously.
Yes, I know, I could just be dreaming and he won't budge, but I need to hope.
This isn't to say whether it's Juvenile R.A. or else Lyme, but I do know that quite often they give meds like Plaquenil for R.A. and Lupus type illnesses, so perhaps a protocol that would cover both and see where it takes you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
My son (now 16 yrs old) woke up on his 5th birthday, with a severely painful right knee. So painful, he could not stand up/ walk, put weight on the leg to walk.
I panicked. I went to the pedi, who referred us to a pedi orthopedic specialist. His first action was to xray the knee to rule out "bone cancer" talk about a scary time. That was ruled out, and we were sent to UCSF JRA clinic in San Francisco. It took 6 weeks to get him into that clinic, and by the 2nd week of the painful knee/not walking, it disappeared. We kept the UCSF JRA clinic appt, because I thought that must be what my son had.
We had the full workup at this clinic, and the only thing that came back was an elevated RA level. Not alarming, but there it was.
Another 6 months went by, and the pain returned. I did not know what to do, as the UCSF clinic was not that proactive on treatment.
The knee pain came and went over the months/years. We dealt with it by monitoring it with his regular pediatrician.
After 2 yrs (he was 7 by this point), I became symptomatic with my own lyme symptoms, my oldest son was also having symptoms (daily headaches) so we all ended up at the LLMD who practices in San Francisco, yes, we were all positive for lyme disease.
I truly believe that JRA is just lyme that has settled in the knee joint. From my reading, this is what seems to be the findings as well.
Not to say there is NOT JRA, just that the doctors do not seem to have an answer as to the cause. And the treatment is benign (Aleve? really?) to not pursue the lyme piece is to not completely rule out everything.
I would get to a LLMD pronto.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My son was diagnosed with JRA at the age of 8 by his pediatrician and a reputable hospital. He had water on the knee and was put on naproxen. Hospital wanted to take the fluid out of his knee to test, but with the naproxen, the fluid was almost gone. They extracted what they thought was the remainder of the fluid though it only came out as some blood and tissue due to the naproxen. The poor kid had to be put through a painful test like that for no reason. I took him to a llmd and he was put on a course of antibiotics from symptoms and a positive test. He is now 14 years old and has been off antibiotics in general for a year and hasn't had anything recurring rheumatoid wise since he was 8. I thank God his lyme has been dormant for about a year now, but with this, you never know when its going to flare again. Good luck and follow your gut.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
bettyg
Unregistered
posted
WELCOME BECKI! check your profile above for private message from me on kids llmds per your request.
i'm NOT sure if you said how old your child is or NOT; please include that in your edited version on 1st post ok!! thanks; some llmds have AGE limits they accept.
please break up your post for neuro lyme folks like me who can not read or comprehend what you wrote. we'd like to be able to help you if we can; otherwise, we have to scroll on by, sob. see my guidelines below for editing. thanks
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
IP: Logged |
adamm
Unregistered
posted
It is still Lyme--no question. There's not been one study demonstrating that the disseminated disease can be cured, and a persistent symptom-free state is generally only attained with very long courses of treatment. You should be able to find someone knowledgeable enough and willing to help him get well by posting in seeking a doctor.
IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just wanted to let you know that I completed my lyme treatment nearly 4 years ago, am symptom-free, enjoying my life. I take no meds or supplements whatsoever. Lyme is a thing of my past. I had lyme, babesiosis, and bartonella. Had them all at least 5 years, but probably more like 10 or 15. My doc required me to continue treatment for 5 months after all my symptoms were gone.
So, with proper treatment, people get over lyme and it is no longer an issue in their life.
The doc is the key. I strongly suggest you get one who follows the Dr. Joseph Burrascano lyme treatment guidelines. Ask when you call to make the appt.
Be encouraged.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
quote:Originally posted by TF: Did you know that lyme disease was first discovered in Old Lyme, Connecticut when a large number of children were suddenly diagnosed with juvenile rheumatoid arthritis?
That's the history. With that history, I would start looking for a new lyme doc for your child.
Definitely!! There are a few LLMD's who are also rheumatologists.
Also, read on www.roadback.org about RA patients brought back to health by taking antibiotics.
PS.. We can help you over in Seeking a Doctor if you need help locating another dr.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I was dx with JRA at 14, found out it was Lyme all this time at 40! Also have the HLA DR4
Posts: 315 | From USA | Registered: May 2005
| IP: Logged |
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I'm just wondering Becki if your little girl could have sciatica due to the lyme.
I had JRA at age 13 but believe it was lyme. Drs. thought it was rheumatic fever while in hospital so gave me penicilan. Later said it was JRA.
When I got sick as an adult and was diagnosed with lyme, I had pain so bad in my leg that I could hardly stand and it lasted for a couple of weeks.
Posts: 1297 | From USA | Registered: Dec 2002
| 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!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
Printer-friendly view of this topic