The post I didn’t want to write. 

I want to preface this post by saying that I have been very open with my symptoms and experiences, but have intentionally not gone into great detail about Chloe because I don’t feel it is my story to tell. Everything I do mention about her, I check with her first and try to avoid giving too much personal information. This isn’t an easy one to write, and honestly not one that Chloe is very comfortable with. We did decide that we owe it to those of you who have been with us on this journey to keep you apprised. 

Chloe’s test results came back. We had tested her for a lot of co-infections because she had started having some symptoms again recently and we knew that some others who have gone had to deal with the co-infections still after getting rid of the lyme. 

The good news is all the co-infection tests were negative. The bad news is her lyme test is still positive. Her levels have gone down, but she is still CDC positive for an active lyme infection. We are absolutely devastated. As you can imagine, I feel absolutely terrible that I got better and she hasn’t -yet.  My heart breaks for her. 

We have contacted the klinik and sent her results and current symptoms to them. Dr. Douwes, the head doctor who pioneered hyperthermia for lyme treatment is reviewing her files and will get back to us soon with his recommendations. We believe in the treatment, as it did cure me and are very anxious to hear his thoughts on why it was not successful for Chloe and what our next move should be.  

Chloe has the best attitude. I admire her positivity so much. She is I’m sure disappointed and scared, but she says “Well, we know what we are dealing with so now we try again to fix it”.  As her 8th grade year winds down, this kiddo who has been through so much already, tells us that her goal is to be lyme free before she starts high school in the fall. Her joints have been bothering her again, but today she starts cheerleader try-outs because she won’t let this hold her back.  I hope and pray she makes it- I can’t stand for her to have another disappointment. 

So as we wait to hear back from the klinik, please keep my little hero in your thoughts and prayers. She’s going to beat this like I did, and be even stronger for it. I will post another update just as soon as we hear. 

  

6 thoughts on “The post I didn’t want to write. 

  1. I’m so sorry. Thank you for sharing, I know that was tough. I hope that the Dr will have a plan as to how to resolve the rest of the infections. My thoughts are with you both.

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  2. How heart breaking! Nothing worse then seeing your kids suffer. Good news is that kids/teens heal easier and faster then adults so hopefully this will be the case with adequate treatment. Prayers and hugs 💚

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  3. During 12 years of treatment with many of the well-known ILADS docs, we’ve learned that treating the co-infections is the key to allowing the body to heal itself from the actual Lyme bugs. Eliminating them is considered the toughest piece of the puzzle. Hopefully this will give some solace as you await word from the Klinik. Perhaps you daughter’s youth and eradication of the buddies that ride with Lyme will give her the ability to kick the rest with an oral protocol. Prayers to all and thankful for the information.

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  4. My thoughts and good wishes go out to Chloe. Keep your chin up Chloe and know that everyone in the “Lyme World” are thinking of you.

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