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My daughter was diagnosed with Lyme.... What now?

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Posted 9/24/2012 7:57 PM (GMT 0)
Here is our story. We are from AZ. We visited TX in June 2012. A couple of days into our trip my 13 year old daughter started breaking out in hives. When we got back home we took her to the Dr. We were given a referral to see an allergist. She went through a series of allergy tests and tested positive to many environmental allergens as well as multiple foods that she previously had no problem with. We eliminating all of the foods and did everything the allergist suggested but, she was still having outbreaks of hives. We took her back to the pediatrician and she was diagnsosed with Lyme about 6 weeks ago. She took doxycycline for 14 days. Her primary doctor said that after the 14 days no further testing was needed and basically sent us on our way.

Is this right? I feel like there needs to be more testing done. She is still having breakouts of hives on or near her joints. I understand from the research that I have been doing that symptoms of Lyme can persist for months or years. We live in AZ so we don't know anyone that has ever dealt with Lyme since it is so uncommon here. Do you know of any LLMDs in AZ?

Thanks!
Posted 9/24/2012 9:31 PM (GMT 0)
Hi SpecialK,
I'm so sorry to hear what your daughter is going through! I know it has to be very scary as a parent. It's such a shame that doctors know so little about these infections.

Lyme isn't that uncommon in Az, by the way. That's where I got reinfected a few times when I lived there.

Lyme disease is a very complex infection and it requires more than 2 weeks of abx, even when caught early. Your daughter should have been on at least 400 mgs of Doxycycline for at least 30 - 60 days in order to put the infection in remission.

I would highly suggest that you read through our "New to Lyme? Start here!" thread at the top of the forum if you haven't already. It's full of important information, informative links, symptom lists (Lyme rarely travels alone),and even a list of questions to ask a doc!

I would also encourage you to visit Dr. Charles Jones site - www.drjoneskids.com/- as he is a Pediatric LLMD and has a lot of good information on his site as well.

Here are the links to help you find a LLMD in your state:
To start, please email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

The best thing you can do for your daughter is to learn all you can with her about these infections. The more informed you, are the better patient you will both be, as you will be able to actively help your practitioner determine what may be going on.

The testing isn't reliable, as over 50% of those with the infections won't test positive, partly due to the bacterias ability to actually avoid the immune system.

Another thing I wanted to mention - there's a site for teens with Lyme, it's their own online support group. You're daughter might find it to be very helpful. www.lymeteens.socialgo.com/

We can help answer most question that you don't understand or may need help with, and we have a really great search function that can help to narrow down posts that have information that relates to your situation.

You are not alone! We are here to help and we are so glad you found us!!! :-)
Posted 9/25/2012 8:09 PM (GMT 0)
There are a lot of people who get lyme in Arizona. Just look at al the birds and rabbits and things running around in the desert. Pigs, dogs, horses, birds. Lots of animals.
Giving your daughter only two weeks of doxy is infuriating! Both of my daughters got it too when they were young. Lilly twice. Once at 1 and again at 3, in Texas too. I got her on amoxy for 6 weeks. But that is only because the Dr. knew me and knew I understood what she needed.
There are many wonderful LLMD's in Scottsdale. I went from Palm Beach there to the clinic to be treated. Envita is the name. There is another really good LLMD there. I know that you could find his name in the 2009 threads on here by snake. He went to him as well.

250 Million birds migrate a year. Lyme is all across our country.
When dealing with Lyme and sick kids it is really a battle. Even worse than getting help for oneself.
When my baby got lyme she was unable to walk and vomiting and a high fever and a bull eyes. And the Dr. in the emergency room in Marthas Vineyard told me she had an ear ache and asked me if this was my first child!
lol.....
I said no....is it yours?
She lost her job soon afterwards.
For some reason getting Lyme and proving that you are sick to our medically trained Dr.s in the US is a lot like getting thrown in jail in Mexico and trying to prove your innocence.
Posted 9/26/2012 12:04 AM (GMT 0)
Thank you for the information! I am glad to know that my "mothers instinct" is right on.
Posted 9/26/2012 8:43 PM (GMT 0)
LOL!! MV - I sure liked your comment to that E-room doc!! ***evil giggle!!***
Posted 9/26/2012 8:58 PM (GMT 0)
lol.....The Battles we lymies have to fight :-P
The only way to get most of these Dr.s attention is to give them a free vacation to Martha/s vineyard and let them take a walk through the yard, in the woods, down to the beach. Then!!
Then they will be very interested in what we have to say. Let them take Doxy for two weeks....and good luck with that! They will need therapy asap too!
lol!
Most of the good Dr.s out there are the ones who got Lyme and then....GOT IT
Posted 9/26/2012 10:50 PM (GMT 0)
For the mom....lets start with the good news. I am happy that you actually got a positive test back. shocking! Happy that you have answers I mean. And surprised that you got a positive reading. What lab did they send it to? Lab Cor?
the bad news that if she tested positive at one of those labs from lyme then her CD57 has to be really high. Meaning.....most labs tell you that you are negative if you don't have enough bands. The test has 10 bands. Meaning that on a scale if you have 5 or under they say you are negative.
So if she tested positive with them....then she really has it. But look at the good side. Now you know and it is early. Lyme grows very slowly, only every 28 days. Not like Maleria every day. So you are on it. I personally prefer penicillin. And that is what my daughter was put on. She got better, I didn't because I am allergic and was put on doxy instead.
in the mean time run to a health food store and buy the best colloidal silver you can find and add it to her water. Put her on a radically strict diet, water only, start taking vitamins like a pregnant women would and increase your Vit. C big time. No more junk.
It helps to think that lyme is like spilling water on a lap top. It makes the thing act all weird and sort of breaks it. That is what lyme is like to the immune system and the central nervous system. It makes it
all start doing weird things with symptoms all over the place that are strange.
so it help to think about how to arm your body and help your immune system heal after this.
I never saw hives on any of my kids as a result of lyme. But I don't know about the co-infections.
You need to check into those as well. IGENEX.
For the most part she seems to be doing well. It is good that you are on it. Most everyone in the world will test positive from Lyme if they do IGENEX. Since we do not live in a bubble and we go out side and have dogs and cats and horses. It is passed many ways. But again, if she tested positive from a regular lab then she has high amounts of it and that needs to be addressed.....asap.
Don't forget to put her on pro biotics. As well. For she will get sicker if these are not replaced. Yogurt too.
Envita was the name of my clinic in Scottsdale. They have a lot more info than I do. But early detection is key.
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