Need help for daughter

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Hi. My daughter is 12. 2 summers ago she had one day felt tired sore throats loagy. Then she was fine within that week I noticed under her arm a bulls eye rash. I immediately got her to the dr. They treated her for Lyme. Lab tests were positive. During her antibiotics course she got a mild form of Bell's palsy that went away. Lasted maybe a week if that. Then she finished her meds and we continue on with life. In march 2017 she complained 3 times that her eye was blurry so I took her to an eye dr. Her vision is 20/20 but on the scan he did he noticed these spots on the affected eye. So I took her to a retina specialist he dilated her and saw these areas also and said they were inflammation. He did an angio of her eye and saw them still but by the pattern couldn't determine the cause. So he drew 18 tubes of blood looking for a cause. Everything is normal but her Lyme. And the western blot has 4 that are positive. I am an RN and work with an adult ID dr. I had her look she says I'd treat it with iv antibiotics. Currently I'm in hold waiting for her pediatrician to call tomorrow and seeing where to take her and what to do. I have researched. I know there can be co infections etc. looking for a Lyme literate dr. Not sure if that's what I need to find. I live in upstate ny. I was told there is a family dr in little falls that Lyme literate. What should I push for. Any help is greatly appreciated. She really hasn't complained except says her knees click and hurt at times and her feet hurt. But she isn't consistent with complaining.

0 likes, 5 replies

5 Replies

  • Posted


    Lisa, I had and still having Lyme disease, I am.definitely much better and trying to my best every single day.

    Dr's find out what I had after 3 years of different type of tests.and if we don't take care in between 48 to 72 hours it become chronic.

    All you mentioned are co infections, antibiotics help but also need to rest, change her diet, avoid or eat less food sugars, flour, preservatives , read meats, sodas, canned foods, no fast food, no frozen food.

    Eat more vegetables, water, natural teas , ginger is great, fish, fruits with less sugar.

    And keep positive mind try to have a normal life but according with her energy and little by little.

    I have seen a huge list of drs.but I havent seen any for more than 2 or 3 years. I have been dealing with it for at leat 9 to 10 years. I had just few antibiotics treatment and all DRs. said it becomes chronic after 48 to 72 hrs

    It was a nightmare but I am coming back to my normal life as much as I can.

    Every body is different and she is very young so

    she will be great. Just take day by day and do your best for her

    Avoid high levels of stress, rest, sleep well. Eat healthy, positive mind and a lot of faith. She will be great.

    If you have any questions feel free to ask.

    Have a great weekend and wish you the best.

    • Posted

      Ok her diet stinks lol. She was allergic to milk whole life so she doesn't eat much vegetables. She loves fruit and she is a sugar Holic lol. I'll keep that in mind. Thanks. My heart breaks for her. This Lyme is awful

    • Posted

      As you said it is awful but with treatment and taking care of the infection or inflammations she will be fine. About food just go little by little and eventually she will like. The body and herself will feel better with a proper diet. It is not an extreme diet. It is just eat healthier. Of course she is a kid and it will be more difficult but just one step at a time.

      Hope she feel better. It takes time and patience but everything will be fine.

  • Posted

    Sounds like a new infection. If she was treated for the first infection 2 yrs. ago and sounds like you caught that one early, then that was likely killed.Lyme is a very slow growing bacteria so I think it is a new infection. She needs to be treated for for the new infection. See an Infectious Disease doc. She might be too young for Doxy, but check with the ID MD. Co-infections will be treated by the doxy well with the except of Babesia which typically runs it course without issue. If it is a problem then they will treat with a malaria drug.

    Overall, sounds like a new infection to me.

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