This may turn into a long post, so please bear with me.
We had our first follow up appointment with the Lyme Literate doctor today. She is very pleased with how Paige is tolerating everything to this point. She even said, “I am impressed and I am not easily impressed!” She can’t believe what a fighter Paige is and how she is attacking this disease.
She did some testing today to see how the supplements/meds are working and what, if anything would need to be changed. She noticed a LARGE amount of Lyme die off (that is a good thing) but it is causing a buildup of ammonia and neurotoxins in Paige’s body (that is not a good thing). These neurotoxins are what are causing so many of her symptoms (I will list those below) and the ammonia is causing her lack of appetite and funny taste in her mouth all of the time. It was good to know that there is a good explanation for these things.
The Babesia, one of Paige’s more aggressive co infections, seems to be either responding to the protocol we have her on OR laying low trying to survive. Unfortunately, we don’t know which it is right now.
The viruses that Paige has (she tested positive for 19) are worse than the Lyme right now. The doctor is shocked by this and says that we need to go after the viruses as hard as the Lyme (or maybe harder). I guess usually when you start killing the Lyme the viruses go away also. With Paige that isn’t the case. Her body is telling us that the viruses are a higher concern at the moment.
We have added in 8 new supplements/medicines and we are stopping one. Paige was thrilled with bringing home a large bag of new supplements (insert sarcasm). She is currently on an intestinal protocol that was only to last 30 days, but the doctor wants to extend it by another 14 days and see where she is after that time. Paige’s liver seems to working well and removing a large number of toxins, but her digestive tract isn’t working quite as well and we need to get that working well also to further help remove the neurotoxins. After the exteded time she will create a new protocol for Paige’s intestines. The new ‘meds’ will go after the Babesia and the other viruses.
The doctor feels that Paige is doing well enough that we can go FOUR weeks until her next appointment…that was good news…we thought appointments would be every 3 weeks. Now, during these 4 weeks she wants us to be in close contact with her and let her know if there are any issues.
From what the doctor was explaining to us, Babesia is a very ‘dark’ infection. She warned us that when we start going after it aggressively that Paige can have some mood alterations, nightmares and maybe even suffer some depression. We aren’t looking forward to this and hope that this doesn’t happen for Paige. Her positive attitude and lighehearted response to her symptoms is making this fight a little easier. If she starts to get down or have bad thoughts, it will make this journey much harder for everyone.
So, that is an update on the appointment…now for her symptoms. She continues to have a very low appetite and isn’t eating well (even with her mother threatening her). She is down another 4 pounds in 2 weeks. 😦When she wants to eat, she will eat without stopping, but that only happens about once every 5-6 days. She is having a much harder time concentrating. Her attention span is about 30 seconds it seems. She has almost no control of her hands a lot of the time. They look almost like she has cerebral palsy, curving inward. Her hand-eye coordination is severely decreased. She can’t seem to put her hands where she wants them or feed herself without MUCH effort. She is having a hard time speaking and putting sentences together, she almost stutters and can’t get words out. Her energy level is a little better, her headaches are minimal, her chest pain is very rare, and she is sleeping a little better. The past several days she is having a hard time walking, not just the dizziness, but just making her legs work. Her feet are pointing inward and it takes much thought to put one foot in front of the other. She needs help getting from her bedroom to the living room. We have had several ‘episodes’ over the past 3 weeks. They aren’t as aggressive as before but they are much more frequent. (the doctor said this is totally normal) Paige is still rolling with the punches and just laughs, cracks a joke or makes light of most of her symptoms. Saturday was a rougher day and she cried a lot, but was back to her ‘normal’ self yesterday.
After her appointment, today we took all of the kids to the mall and pushed Paige around in the wheelchair. She was glad to be out of the house, she even enjoyed a small amount of chocolate ice cream (she hasn’t had any in over 2 months, since we went gluten/sugar/dairy free). It took a lot out of her though and by the time we got to the car she could hardly keep her head up. She slept all the way home.
Tomorrow we start the new protocol and we pray (with everything in us) that she tolerates it well, it doesn’t change her personality and that it starts to kill the viruses.
OHH, the best part of today (at least for mom) was when she went to tally up what we owed. I didn’t realize that each visit would bring new meds so I was only expecting the office visit fee today…but then she started bringing out new bottles and jars and I sort of freaked out. She started adding it all up and went “OH” I forgot to tell you, I overcharged you last time and you have a credit toward today’s visit…I started to cry!!!!!!! Today ended up costing ONLY what I had budgeted for the office visit and the meds she was out of, including the new supplements/meds. I need to order 2 online that she didn’t have in her office that I will have to pay for, but the credit was a HUGE blessing today…one that still brings tears to my eyes.
Thank you again for praying for our girl, she still needs them. (well, all of us do) We appreciate all of you so much.
PS: remember to check out the auction, possibly bid and please share it…it would be awesome if we could raise enough money to cover 3 months’ worth of treatments.