Saturday we participated in the 5K Lyme Awareness Walk in San Diego. We were up early and drove nearly 3 hours to get together with other Lyme patients and supporters to bring awareness to the Lyme epidemic. The weather was cool and we got rained on a couple of times, but we kept on walking.
It was good to see people who are doing well after treatment and to talk to doctors who are on the cutting edge of new therapies and treatments. I was able to gather lots of information and now have more research to do. Is learning and research ever done with Lyme Disease?
Paige woke up and was walking well and we thought it would be a good day. However, by the time we got to San Diego she couldn’t move her legs at all. She couldn’t even lift them to get out of the car. We got her all settled into her wheelchair, and that is where she was for most of the day, until her dad helped her across the finish line. He knew that being in the chair was hard for her, so he helped her walk and finish strong.
After the walk we drove another 3 hours for Paige’s doctor appointment. This visit wasn’t as good as the others. We aren’t going into great detail, frankly because we are just weary of the messages and comments questioning things. We know people mean well, but it just gets overwhelming.
But basically, Paige isn’t getting rid of the neurotoxins and ammonia from the Lyme die off. The level of toxins and ammonia in her body, mainly her cerebellum, is very high. We are decreasing the supplements that are going after the Lyme and infections and upping and adding several other detox supplements. We are hoping this will help her flush the toxins quicker.
We are also looking into other treatments and therapies for her and will be adding those as we can afford them. Infrared therapy is top of our list.
We will also be doing some genetic testing to see if there are markers that may help us understand why her body isn’t flushing the toxins.
More diet changes are also on the list. Added in foods high in folate and drinking as much of a detox tea as she can drink. She is NOT thrilled about this.
Upon further testing it is confirmed that Paige has Bartonella, Lyme, Babesia and Powassan Encephalitis in her cerebellum. (And a few other viruses) These infections, added to the neurotoxins and ammonia, are what are causing her neurological symptoms, all which are increasing in severity. Her protocol is working against these, but not as quick as we had hoped or would like. This, and that some of the symptoms are continuous, are concerning to her doctor.
We talked about alternatives and where to go from here. Our doctor will be consulting with another doctor and seeing if together they can come up with a better plan. For us, IV medication is a last result, but it may come to that over the next month or so. We will see her doctor in a little over 3 weeks and will reevaluate our plan based on how she has responded to the new protocol.
So specific prayers requests:
1. That Paige’s body will start to flush the toxins and ammonia
2. That the new protocol will continue to kill the Lyme, even at the lesser amounts
3. For the funds to be able to get a wheelchair, an infrared mat and the genetic testing.
4. For clear direction as we move forward this month. We have some tough decisions to make and need to feel at peace that we are making the right ones.
5. That there is no permanent brain damage. We will do testing when Paige is well, and we may not know until then if any of these neurological symptoms are permanent.
6. For strength for all of us. This journey is hard, emotional, trying, lonely and tiring for everyone (but especially Paige). Prayers for endurance are appreciated.
If you would like a ‘Team Paige’ shirt, you can get one here. We make 50% on each shirt, so it is a win/win:
If you would like to send Paige something off of her Amazon wish list, you can view it here:
If you would like to donate towards Paige’s medical fund, you can do that here. Paige’s current protocol, not including therapies, diet changes, chemical free beauty products or other needs is more than half of the families income. Any help, if even $2, is so helpful.
Thank you for your prayers and support.