One Step Forward, Two Steps Back

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We saw Paige’s doctor today, and like many of our past appointments, we had some good news and some bad news. During her exam the doctor was pleased at how Paige’s body was responding to her and giving her clear answers. She said that her body is starting to realize what is going on and making sense of the Lyme and treatments. That is a good sign. We want her body to sort out what is going on and figure out what it needs. Lyme is so different for each person, symptoms are always changing and there is no ‘one size fits all’ treatment plan. So we really need to listen to Paige and her body to see what she needs. She also tested quite low for ammonia and neurotoxins and that made us happy, until further into the visit when we realized that there was little to no die off, which explains the low ammonia and neurotoxins.

The part of Paige’s brain that interprets sound still has a lot going on. Lyme, Bartonella and Babesia are the most ‘active’ right now. This explains why sounds have been overstimulating Paige in recent weeks. Her doctor has made a special blend that will help direct her medicine to this part of her brain.

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As we got into the appointment and her doctor started the indexing, we realized that there wasn’t much progress from 5 weeks ago. She was expecting much more die off and more progress after such an aggressive treatment plan and how sick Paige has been. Lyme shows good die off and Babesia does show some die off, but not a significant amount. Bartonella, which is really tricky to treat, started to respond and then ‘got smart’ and changed up a bit. This is TOTALLY typical of Lyme and co infections. They take on many different shapes and learn how to hide so that they survive. Bartonella is one of the hardest to treat, and we are seeing that with Paige. Bartnonella is very neurological, so she is hoping once it starts to die we will see a change in Paige’s cognitive skills and decreased neurological issues. She has upped one of the ‘killing’ meds and started a new one. She again warned us that this is a very strong medicine, so be prepared for Paige to feel terrible when it kicks in.

When we discussed Paige’s on going issues with eating she asked if we have ever lived in a house with mold…um, yeah!! That is why we had to move from our last house. She had checked Paige for mold toxicity when we first saw her and she didn’t respond, but today she did. Her doctor said she thinks her body wasn’t recognizing the mold back then, due to the other viruses and infections being so bad. But as we start treatments and her body starts to respond and learn what is going on, we will see negative tests become positive. This was not encouraging. Back to mold…since she tested positive we will be treating her intestines for mold. We are HOPING and PRAYING that this will be the answer to her intestinal issues and will allow her to eat and gain weight. We will try this for 21 days and see how she does.

Paige had an episode right before her appointment and was pretty out of it for the first half of the appointment. It was good for her Dr to see her this way and be able to understand what we mean when we say she is having neurological issues/episodes. She didn’t really give us any new things to try to get Paige through these, she just told us to keep doing what we are doing and to get her to eat as much organic high/animal fat as we can. We are doing about all we can medicine/treatment wise right now, we just need to kill this stupid Lyme and co infections. We will continue to ‘feed’ her brain with healthy fats and foods and help ‘wake it up’ when she is having issues. We do all of this and pray hard that none of this is permanent.

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I guess that updates on her appointment. Please continue to pray for Paige, that her spirits pick up a little bit and that these treatments will start to work. It is hard to realize that she has been so sick and not a lot to show for it. (some die off, but not much)

(Today’s appointment wasn’t cheap, but I guess none are, adding several new meds made today a bit more than usual, and it was AMAZING when we got home to 2 cards with donations for Paige that covered 1/3 of the meds that we got today. I am amazed each time I open a donation, at how many love Paige and how God takes care of her needs before we even know they are a need.)

 

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