posted
9 year old diagnosed in april. no em no tick found.
r knee swelling in jan. i dismissed it due to her skiing like a maniac and falling. ice and motrin given. swelling gone in 2 weeks.
r knee swelling again in march. i knew this was not a coincidence. saw orthopedic md who did x rays to rule out trauma and tested for lymes.
treated by pmd with amox 500 3xday for 30 days
end of june swelling in L knee(other knee). saw peds Infectious disease md who gave doxy 100 2xday for 28 days. occasional abd pain since starting. also started on probiotics.
md feels lymes possible for at least a year. but i dont really know. she has asthma & allergies and has headaches & tires easily. may also be due to lymes but dismissed as allergies.
md now also testing her for Juvenile rheumatoid arthritis. he doubts it but wants to make sure due to swelling in both knees.
can swelling involve multiple joints?
when do you know if you are cured?
i know catching lymes early=good prognosis but i don't know where she stands on this as some of you have had it for many years. i dont know how long she has had it. not many deer where we live but GM bought a house in pa 3 yrs ago and very heavily populated with deer.
IGG WB 7 IGG bands 18 28 39 41 58 66 93
IGM WB 1 IGM bands 41
thanks for your guidance. i am a nurse but like other medial professionals have had little education on lymes. now i am doing as much research as i can.
thanks, amye
Posts: 26 | From verona, nj | Registered: Jun 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hi amye,
Welcome to lymenet - you came to a good place for good information and wonderfully supportive people.
I am sorry for you and your daughter, but you are on the right path, searching for information and looking further.
I have very late stage lyme, so I have a really hard time composing my thoughts, but I see you posted your thread late and not many are around right now.
I wanted to respond until others can come along to help. Others will be by to help though.
Your daughter had what looks to be a positive WB, which is a boon. She is also exhibiting symptoms indicative of Lyme and possibly other tick-borne diseases. You absolutely can have swelling and/or pain in multiple joints with Lyme. I do, many others do.
The most important thing for you to do right now is to seek a Lyme literate doctor (LLMD). Do not worry about solving the mystery of when your daughter contracted Lyme, or if she might be cured, right now.
First thing is finding her a doctor that understands treating Lyme and related infections. Your doctor sounds like a rare open-minded one, but unfortunately that is not all that is needed in treating this disease appropriately. She needs to see someone who knows how to effectively treat Lyme and other tick diseases.
Please post a thread in the forum "Seeking a LLMD" stating your general location in the thread title, and areas/states you would travel to if necessary.
People with knowledge of an LLMD in your area, or as close to you as possible, will pm (private message) you with a doctor's info. We do not disclose LLMD names or info in the forum. Suffice to say they need our protection.
As for prognosis, she is in good hands, and she is about to get treatment from a knowledgable doctor, and that is positive.
There is no proof of cure at the moment, but there is objective proof of people feeling better with treatment (including visible joint swelling abating, CNS and neurological testing returning towards normal, etc.).
I am not dispensing any medical advice, just my personal knowledge gained and personal experience. The best course of action is to read up on Lyme and associated diseases as much as possible after you aquire a LLMD apointment.
(I missed that you already had a Lyme diagnosis for your daughter, but I will leave this next part in for any other new members that might read this):
If your LLMD determines she has Lyme, they will give your daughter a clinical diagnosis, based on their own experience, training and judgement, and her health history and spectrum of symptoms, among other things. The tests are secondary at best, and are not meant to be diagnostic.
I'm sorry this isn't as helpful or thorough as I would wish it to be, but this is the best I can do right now. You will get more help soon. I'm sorry you have to be here, but welcome aboard, and I hope we can help you help your daughter. My best wishes to your daughter, you, and your family.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I just want to echo what Nenet has already said. You really need to find a Lyme Literate MD (LLMD) for your daughter.
She needs to be treated longer, until symptoms have been gone for at least a few months.
Obviously your doctors want to help, but unfortunately they are not following treatment guidelines that will really get her well. That's why you need a LLMD for her.
Welcome to Lymenet.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Just to add that it would be worth seeing a lyme literate doctor whose viewpoint will probably differ from a conventionally inclined MD.
My son is now 11 and probably got lyme disease 2.5 years ago. After 6 mths delay in diagnosis he was commenced on abx and now, 2 years later (still on abx but hopefully off them soon) is asymptomatic most of the time. No more joint pain and full of life!! Children tend to do well and they are more likely to have tummy ache compared to adults.
Good luck and cyber empathy to you Chiz
Posts: 67 | From UK | Registered: Oct 2006
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posted
now i am getting worried about doxy and her teeth. this is a great site and i know knowledge is power but knowledge also scares the heck out of you. seems i can't sit at my computer and not read about lyme now.
Posts: 26 | From verona, nj | Registered: Jun 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I agree with what everyone else says .... please get her to see an LLMD.
You treat until she's symptom-free for two months.
I also would worry about the doxy for a 9 year old. You would think the doctor would have been aware of that. Maybe you can ask the doctor to switch her to amoxy or zithromax while you wait for the LLMD appt.
Check out the Dr. B guidelines for diagnosis and treatment at www.ilads.org.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Maybe you can ask the doctor to switch her to amoxy or zithromax while you wait for the LLMD appt.
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