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Treatment for 7 year old

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Posted 10/9/2014 6:04 PM (GMT 0)
My husband and I are struggling with how to treat our almost 7 year old daughter. She tested CDC positive on her Igenex IgM, negative IgG. We don't know when she was infected. I was diagnosed with Chronic Lyme earlier this spring. We tested her because I may have had Lyme when I was pregnant and she presented with leg pain (for the past year, mostly left leg), headaches, and random stomach pain.

Pediatrician treated with Amoxicillin (25mg/k/day) for 28 days. She refused to treat further and is not convinced the symptoms are related to Lyme. I took our daughter to my Naturopath who believes we should continue treatment (4-6 months, 2 months after symptoms resolve) and upped her dose of Amoxicillin (50mg/k/day) plus Azithromycin (200mg/day or 10mg/k/day). VSL#3 Probiotics (2-3 per day).

My husband is worried about long term abx use and that the treatment is not accepted by the medical community... I'm worried about not killing the Lyme and dealing with relapses in the future. Knowing what Lyme can do I don't want to take any chances. We're having a difficult time coming to a consensus (though we have started her on the Amox. + Azith.).

Any comments/personal experiences are much appreciated. Thanks for reading!

Well wishes to you all,
Beth
Posted 10/9/2014 6:13 PM (GMT 0)
Sorry you are having to deal with not only yourself having lyme, but also your daughter.

I think treating her with the antibiotics for a few more months is a good idea. Maybe after symptoms subside, you could turn to herbals.

I wouldn't worry too much about the medical community not accepting it. You need to do what it takes for your daughter...and stopping treatment is not best if you want her to heal.

Beth - how are you - symptoms?
Posted 10/9/2014 6:31 PM (GMT 0)
I started seeing improvements once I switched from Mino/Rifampin to Atovoquone/Cipro. The Atovoquone/Cipro has given me lots of good days. It's so important to find the right combo. Babesia seems to be a big one for me to fight right now. Headaches are gone, muscle fatigue/pain/twitches much better. I still have some neuropathy in right foot, eye floaters, fatigue, shortness of breath and lung weirdness... but when you've been sick for so long this feels wonderful. :)

Thanks for asking! And thanks for your input. I was feeling so alone in my opinion. Glad to know I'm not completely off my rocker. Great idea to do abx then switch to herbals. I'm hoping to do that myself too.
Posted 10/9/2014 6:57 PM (GMT 0)
You're welcome, Beth!

That's what this forum is for. I was really messed up emotionally/psychologically before I found this forum. It has helped me immensely.

No one knows what's it like to have lyme disease...unless you have lyme disease. It's indescribable - (don't know if that's even a word, but you get my meaning)

Children usually heal very well with treatment - so try not to be too worried ( I know -easier said, than done )...but definitely continue. The treatment past symptom resolution for a few months is important - whether it's antibiotics or herbals.

Are you and your daughter detoxing? And, have you read the thread at the top of the page: "New to Lyme?..Start Here"? It's full of great information, including detox methods.

Please keep posting...any questions, or concerns, or just if you need support at any time.
Posted 10/9/2014 7:26 PM (GMT 0)
So true, you can't fathom this disease unless you've had it or been close to someone with it. I look at my symptom list pre-treatment and shake my head. It seems impossible.

I did read the post about detox etc. that was a very helpful post. I take detox baths, have cut out gluten and alcohol, sugar and some dairy. Also use castor oil on my belly at night, was taking lots of protein powders when I felt I needed them. I take collagen too. I've seen a therapist and see a body/energy healer every week. You can't jut take the meds and expect results. Gotta fight for it!!

I'll work on detox with my daughter, have been thinking about that recently. Trying to make sure she drinks lots of water and eats healthy foods.

Thanks again!
Posted 10/9/2014 9:05 PM (GMT 0)
Your daughter likely has the infections that you tested positive for, if you feel you have been infected for years - babesia, bartonella and mycoplasma as well as lyme. The abx she is receiving will likely not totally treat babesia or bartonella.

After our daughter went through 2 years of multiple combo abx treatment for bartonella (because that was the only infection she tested positive for or had clinical symptoms for) we weaned to Buhner's herbal bartonella protocol.

She held steady (at about 80% improvement) with that for 8 months, but didn't really show more improvement until I added Buhner's herbs for babesia.

Now she is almost at 100%, although we are now having some difficulties (headaches mostly) with recently initiated Wifi in her classroom. She is fine at home though.

It sounds like your naturopath is leading you in the right direction with detox etc. But don't assume your daughter only has lyme if she hasn't been tested for coinfections.
Posted 10/9/2014 10:13 PM (GMT 0)
Thanks - I'm also worries about co-infections. She is getting tested for babesia and anaplasma. I tested neg for cos but was clinically dx. I wish the tests were more reliable. It's not an easy disease/set of diseases to navigate. Thx for your input. Good health to you and your families!
Posted 10/10/2014 2:45 AM (GMT 0)
Just be glad you found out was wrong before more time passed, like our daughter did. Hopefully you'll get the answers you need for her to get on the right meds and start moving ahead. Keep us posted.
Posted 10/10/2014 5:28 PM (GMT 0)
Welcome to our community, BethB!
I got my infections at a very early age myself - around the age of your daughter is now - 7 yrs old. I went undiagnosed for over 37 years and without effective treatments for 40 yrs. I'm so glad that you are fighting for your daughter!! Please know that we are here for you and to help you learn and deal with these infections, as well as you daughter.
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