Hello all!

I need your help and knowledge....

My family and I have recently been diagnosed with Lyme (my mom, myself, my husband and our two girls (ages 4 and 9 months). I am feeling very sick and have just started treatment in Texas with Dr W. My husband in not symptomatic, but his Western Blot was positive for a few titers and his CD57 is low (24).

1. First question: Has anyone been treated for Lyme that is asymptomatic? If so, what has been your experience?

My 4 year old is showing many signs of Lyme, had a low CD57 (60) and had a very positive Western Blot. She is breaking my heart with the pain she is feeling in her body more frequently in the last few weeks. We are working on finding a pediatric Lyme Dr. We have an appt with Dr J in Conn in Feb, but feel we need to get her in to a dr in the meantime.

2. Second question: Are there any parents out there that LOVE their pediatric lyme dr? Any wonderful pediatric LLMD near Dallas, TX? I have been told there are none in TX.

We are currently looking at Dr R in Seattle and Dr B in Los Angeles. I think they both seem to be wonderful LLMDs, each with their own set of pros and cons.

3. Is anyone currently treated by Dr R is Seattle or Dr B in Los Angeles? I have appts for both drs in late Oct for my 4 year old, but need to decide on which dr to see soon to book airline tickets.

In addition to my 4 year old, I am strongly thinking my 9 month old has Lyme. We have been advised to hold off on testing until she is over a year (she was breastfed by me until I realized I had Lyme in July). I believe my older daughter has Lyme congenitally, so thinking it is more than likely my 9 mo old has it, too, sadly.

4. Any parents whose children have congenital Lyme? What did you do for infants under 1? Did you start to treat right away? Did you wait until after a year? Both drs in Seattle and L.A. suggest waiting till she is a year to do Western Blot testing and treatment, but I also hear the sooner you treat, the better. It kills me wondering if she is in pain when she cries :( What has been your experience?

Last thing....I am obviously worried about how we will afford treating 4 ill people at the same time without insurance coverage. I am trying to find programs to help pay for flights for my daughters' appts that are out of state.

5. Does anyone know of a program that offer assistance to ill families for airfare?

Any and all help would be SO appreciated! I am trying to take this one day at a time and be a strong leader for my girls and family, but this is hard, especially when I feel so sick, myself!

Thanks in advance!

Caliso,
I'm sorry to hear that you are all ill; what a difficult journey! I found out that I had Lyme a month ago and have started treatment. I started to become sick during my 7th month of pregnancy with my second child. After delivery, I got extremely ill. My LLMD isn't sure how long I've had Lyme. He said that I could have had it for years and that the immune system changes during pregnancy gave the Lyme "full reign". I was wondering when your children started to show symptoms and what their symptoms are? I have a six year old son. He's healthy and has showed no signs. I'm not sure if I had Lyme while pregnant w/ him or not; I don't think so. My daughter is 14 months. She is a very happy, energetic little one and hasn't showed any signs of illness. She was on antibiotics one time around 6 months for an ear infection and didn't show any signs of herxing. I have worried that I may have passed it to her though, since I was so sick during pregnancy. I did breastfeed her also, although only for 2 weeks because I was extremely ill, couldn't eat or drink and was in and out of the hospital. I just can't get rid of my concern about it though. Whenever she is cranky, extra tired, etc. (like during teething), I get really worried thinking that she might have Lyme. My husband tells me I need to chill out, LOL. I just don't want my baby to ever suffer w/ this though; I know you understand that feeling! My LLMD said that he does not recommend testing her if she isn't showing any signs of it at all. And he said that he doesn't recommend treatment w/o symptoms anyway.

Dear Calisso, I sympathize with you. I have 3 children who probably got the bacteria from me during pregnancy. two of my children have issues, but both are really healthy overall and I don't think they are suffering chronically, as I have.

My focus on their health is to maintain and promote their immune system health. The stronger that is, the better they are at fighting off regular germs and keeping those they already have in check.

I give them a good multi vitamin, they have super green food (chocolate flavor for kids) and I check their Vit D levels. Vit D is really important to the immune system and many kids are deficient due to sunscreen and lack of daily direct sunlight.

I hope your plan comes together to help them. I speak from experience that it's really difficult to juggle our own healing while worrying about our children's health. Try to stay in the moment and not worry about their future. The best news is that you know what (lyme) you are dealing with in your family, and for many of us, naming it is half the battle.

Also, I recently read Buhner's "Healing Lyme" book and it really helped me understand how lyme works and offered many ideas on how to support the different problems lyme creates. Gave me a lot of ideas to help my own healing, and ideas should one of my kids show signs of the active lyme disease.

wishing you and your family many blessings and good health,

Hi Maddybear,
First of all, let me say how sorry I am that you have to deal with this, and I'm so glad you found our site!!

For good information on children with Lyme and the other tick-borne infections, and info on congenital Lyme, you can do some reading on Dr. Charles Jones site: www.drjoneskids.com/

I would also encourage you - if you haven't already - to read through our "New to Lyme? Start here!" thread located at the top of the forum. It's packed full of important information, informative links, symptom lists (as Lyme rarely travels by itself) and even questions to ask your treating doctor!

Have you had adequate treatment? If not, that would be something that you should pursue once you get your kids treatments going. Leaving an infection untreated will end up in possible serious health issues later in life. All it takes is just the right amount of stress and the infection(s) will become active again. Please consider this if you haven't had adequate treatment. If you have, well - - at least I'm thorough!! LOL!!

Please do let us know how we might be able to help.