posted
My 12 year old daughter tested positive IgM band 23 and 41 but negative to IgG. She gave lots of blood (per Ped Rheum)but hasn't asked for results. She has A LOT of memory problems and such (in addition to joint problems in the knee and ankles/toes, stiff neck, dry eyes, OCD, slow changing from activity to activity, fatigue, etc) so she is most often playing catch up with no time to think ahead. Ped Rheum scheduled an appointment with an ID Doc in 2 weeks but I am wondering if I should just bypass that and try to get her in to an LLMD instead...why drag her through both?? Or maybe, just perhaps ID will put her on an antibiotic until I can get her into a LLMD?? The wait is so long. If you were me and your child was experiencing these things..what would you do..what would you tell her and when? She is such a sweetheart, so sensitive and constantly worries about everything, HELP us please. P.S. Any favorite LLMD's. Dr J is too expensive for us, anyone heard anything about Dr L in Vienna, VA?
Posts: 166 | From USA | Registered: Feb 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I would prefer a good LLMD and you can take the results with you.But in the meantime probably I would also meet the ID doc, he probably will give her doxy.I was started with doxy and then ampicillin what was better than nothing.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thanks for your response! Someone said that Doxy was too strong for a twelve year old, is that true? Were you young when you started? Do you have a good LLMD?
Posts: 166 | From USA | Registered: Feb 2010
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter started on zithromax at 16. She was really ill.
Tell your daughter that it's like being treated for cancer. She will feel worse, like most cancer patients do on chemo. She will need to listen to her body and follow instructions.
My daughter chose to fight. She worked very hard.
Tell your daughter that my daughter was just like her. My daughter spent the last two years of high school on the sofa. Graduated in a small ceremony while listening to her friends graduate in the stadium of the high school down the street.
After four years of antibiotics and all the rest of the things you need to do to cleanse and strengthen the immune system, she traveled to Berlin to compete in speech tournaments.
Five years ago, her memory was horrible. Today, she memorizes several ten-minute speeches.
Five years ago, her hands were in so much pain she could hardly use them. Today, she is majoring in sign language.
Tell her she will have life, but it will take a lot of rest..and hard work.
There are many who have walked in her shoes.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I am so sorry to hear that your girl is ill.
I second what Karenl said about getting to the infectious disease MD and start there. Some lucky folks are much better after that initial treatment provided by non-LLMD's(me being one of them-not 100% yet, but very close). Then, schedule an appointment with an LL practitioner for down the road, and that way she will not have to wait. Also, start her on a diet that is low in foods that promote inflammation (look up on line...nightshade vegetables are a big one), and start a good probiotic to get her ready for the antibiotics she will be on. Keep her hydrated and nutritionally sound, and that will go a long way to help her body and immune system address this. Please keep us posted...my heart aches for her!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
Thank you so much for your input...I check this site A LOT in hopes of more information. This is really scary! I am glad you are getting better..what a confusing disease. Kelmo, WOW! You must be so proud of her, in so many ways! Thanks KarenL, I will do that. Do any of you have any recommendations for an LLMD that treats children and uses Dr B protocol? I have a few names but I need some reassurance. Of course we only want our children to see "the best of the best". Thanks again for your advice!
Posts: 166 | From USA | Registered: Feb 2010
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posted
My daughter was 11.5 when all this started two years ago. She was very freaked out about everything--ER had us thinking she had a brain tumor--we went from ologist to ologist.
Blood was taken so often I had to schedule her appts around when her body had replenished her blood--ugh--was awful. And this was a needle-phobic child to begin with!
Since she was so worried about everything, as were we, we tried to downplay it a lot. I would suggest the same for your child at least in the beginning.
We found that a lot of my daughter's fears and worries were also amplified by the nature of the tick borne infections. Once she started on treatment, her emotional strength grew to where we could start talking openly about the infections and why we were treating in a particular manner or seeing a particular specialist.
I think the growth came from both the abx finally working on the infections as well as time spent dealing with the illness showing her that she will get through this, and we, as her family, will be there to support her through it all. Plus, our own knowledge about the infections was growing too, so we could now answer her questions with realistic answers.
We've always maintained our hope and optimism and end each day with powerful, positive affirmations of good health.
She will get well--is it frustrating that it is taking SO long to get there? Yes, but we know we WILL get there, so we hold on and move onward!
I would only see the ID if that is the only way to get doxy. Twelve is fine for doxy, btw. My daughter was on it at 12. If you have a doc that can get you doxy without having to see the ID, I would wait and get in to see a LLMD as fast as possible.
I also second the recommendations to build up the body with supplements and good diet while you wait.
I know your mind is probably reeling right now with everything you're reading, but try to take deep breaths, read and learn everything you can about these infections, but in short bursts--and hold on to the fact that with proper treatment from a LLMD, your child will get relief.
Good luck!
HUGS!
Posts: 648 | From northeast | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with others who said try to get some abx from the ID and get her to an LLMD ASAP.
I'm so glad you were able to get answers for her. Every person is different in how they will handle the information but having been a child with a mystery illness myself (lyme and co-infections), I personally would have felt some relief to know that someone figured out what was wrong and could finally help me.
It's a lot scarier to feel really sick with an illness that no one can figure out or help you with than it is to know what is wrong and that help is coming.
you asked: what would you tell her and when
I would tell her now that you know what is wrong and she will eventually be living a much better life!! Then I would slowly let the testing and treatment issues unfold so as not to overwhelm her. If she asks questions, I'd be truthful and tell her what you know but that you don't know everything. I'd put as positive a spin on it as I could.
Kids heal faster than adults and there is no way of knowing how long it will take - it could be fast or it could take a little longer. BUT, you have some good news to tell her. WE KNOW WHAT IS WRONG AND WE ARE GETTING THE BEST DOCTORS TO HELP GET YOU BETTER!!!
Wishing her a full recovery and a healthy wonderful life!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Your daughter may be ready to join this support group for young people sometime in the future.
It was started by a young girl who got lyme at age 13 and no one could figure out what was wrong with her. I think there are lots of people who would understand what she's been through.
posted
Mystery - Everything TerryK and aMomWithHope said is so true, and you will feel so much better once you start treatment and are on your way to her feeling better. She may feel worse for a little while after starting treatment but then it gets alot better and you see improvement each week. Hang in there!! And keep us posted.
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
Thinking dealing with a tween will be harder...
Mine was infected at age 3, almost 4. Misdiagnosed (despite classic symptoms) until age 5. Never had to explain anything to him, lyme was just a part of his life that he accepted.
When he began treatment with Dr. J at age 6, we were just matter of fact about why he was taking them. He understood that sometimes he wouldn't feel good, but that he would get better. We seldom talked about lyme, just tried to keep his life as normal as possible.
My belief, he had lyme, lyme didn't have him....
After 10 months of treatment, my now 7 year old is MUCH better. Just saw Dr. J on Monday and we've stopped antibiotcs. Cured? Hoping so....
Hope someone can point you in the right direction to a good LLMD so your daughter can get on the road to recovery.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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