Doctors appointment update:
We drove to San Diego yesterday to see Paige’s doctor. It was a LONG day. We were gone for over 12 hours, but Paige did pretty good. She started out having a great morning and her doctor was so excited to see how well she was doing. But by the end of the visit (they are usually 2-3 hours) she was feeling off. I could tell that she wasn’t well and her doctor was glad she was able to see how quickly she goes from good to bad and what happens when she is bad. She gave me some suggestions as to how to help Paige through these little episodes. She showed me what medicine to get in her right away and suggested we get some healthy ‘sugar’ to feed her. She said that her nervous system gets worn out and tired and can’t function properly. The only thing that will wake up her nervous system is glucose. So, we need to get glucose into her before her system gets overtaxed. Every time her system gets overtaxed, brain cells die, so we need to take steps to keep these episodes to a minimum. I have already ordered organic, non-GMO dried pineapple and mangos and also crystalized ginger. These are all good options to get some good sugar into her. The crystallized ginger is also supposed to stimulate her brain to want food. Which is another HUGE issue right now.
The overall visit was 50/50. She is pleased that Paige is showing improvement in some areas, less migraines, joint pain way less, only needing the wheelchair about 65% of the time and a few other things. But she is concerned that she is still having issues in other areas, not eating, feeling weak, not being able to sleep, chest pain, not being able to focus and some other issues. With Lyme (education time) symptoms should always be changing. As we address one issue it should clear up, the Lyme migrate, and we have another issue. The fact that Paige is still having symptoms that she had 3 months ago shows the doctor that even though the Lyme is less, it is still in those areas. Therefore, more aggressive treatment is needed. Lyme is also tricky and sneaky. It is ‘hi jacking’ other cells, viruses and bacteria trying to stay alive. This is where the new symptoms are coming from. As we treat the ears and her hearing issues, it will move to her nose and make food smell terrible, thus not wanting to eat it. So, we are constantly going after different issues and different body parts to flush the Lyme out.
Our biggest issue right now is getting Paige to be able to eat. Her doctor has always been concerned about her weight, but yesterday she was very concerned. When the body, t cells and immune cells don’t have enough protein to feed off of, they go after muscle. She pointed out to Paige where she can see the difference in her arms and legs and told her that is the t cells eating her muscle. She really stressed to Paige that even if she is too sick to eat, she MUST get in good protein and glucose. The lack of eating is also making it hard to kill the viruses. Paige needs lot of good immune cells in her gut to go after her 18 viruses. But when she isn’t eating, there aren’t enough good cells to do that. Also, when there aren’t good immune cells in the gut, the Lyme and other co infections will ‘hide’ there. And upon testing yesterday, we discovered that her gut is FULL of Lyme, Babesia and Bartonella. We are starting a 30-day intestinal protocol that will hopefully start to flush all of this out of her gut. Jim and I just need to be harder on her to eat something, anything. Even when she feels terrible, we have got to get food in her. And I think she finally understands the severity of the issue. She understands that if she doesn’t eat, she won’t get better. Period. And if she doesn’t eat she will need to go into the hospital where they will have to put in a feeding tube. As terrible as it sounds, I hope this scares her a little bit and she will start to eat a little more. (please don’t try and sell me Plexus for her gut, I already talked to dr about it and it isn’t something she feels is good for Paige at this time)
As far as treatment…the Lyme is still very active in Paige’s brain. She is testing high for Lyme and Bartonella specifically. The Babesia is still there, the Ehrlichia is still there, as well as the viruses, but these first two are high and causing the most ‘damage’, for lack of better word. (It seems that Powassan is gone or ‘hiding’, but isn’t ‘active’ right now) The doctor looked at Paige and asked her how sick she wants to get (because you get worse before you get better) and Paige said ‘hit me with all ya got. I just want to get better’. She then looked at me and asked what I can handle. I started crying. You mean it gets worse than this? I deferred to Paige and she said mom, ‘we can do this.’ So, we opted to go ‘all out.’. The doctor added in 7 new medicines. Two to go after the Lyme, 2 to go after the Bartonella, 1 to go after the Babesia, 1 is a strong detox that we give immediately when we see her having issues and another detox that she is take 6 times a day. She is now taking over 30 different products, multiple times a day. Dr. Cannon told me that in about 3-5 days Paige will be VERY sick. She won’t want to leave her bed at all. We need to make sure she does her foot baths (and get a rife machine if possible), make sure she uses her infrared blanket, drink AT LEAST 16 oz. of a detox tea/water (we make it with turmeric, ginger and lemon) and EAT. Even if one small slice of chicken at a time. Make sure she eats. Her body is going to need strength to get through this next round of medicine. We are to be in contact with her every 3-5 days to update her on how she is feeling.
The next 5 weeks (until we see Dr. Cannon again) are going to be hard. Mostly on Paige, but on all of us to some degree. I am already praying (almost constantly) that the Lord will make me as strong as Paige, that I can endure seeing her so sick. I am praying that we can avoid the hospital and that our care here at home will be enough to get her through this. But mostly I pray for Paige’s spirit/soul. The Dr. told us several times and texted me again last night, that this is going to be very hard on Paige and she doesn’t want it to ‘change’ her. So, we need to watch her and pray that this treatment only kills the Lyme and doesn’t kill her spirt. I know for those not aware of Lyme, its treatment or what it does to the body may read this and think this seems harsh, or exaggerated…but I assure you, this is the reality of Lyme and its treatment. Most patients with severe/chronic Lyme, really do feel like death for years while undergoing treatment. It is horrendous what it does to the body overall.
Thank you for EVERYTHING! The prayers, the gifts for Paige, the donations, the cards and messages…they are all appreciated and keep us going on those hard days. Please continue to spread awareness for Lyme Disease! Changes need to be made for testing and diagnosis and insurance companies need to step up and cover treatments. It is a shame that in 2017 we have people dying from Lyme Disease because our government won’t recognize it as a disease. Shameful!!
How can you help:
- PRAY!! Pray that this next month or two isn’t as bad as we are preparing for. Pray that Paige can press on and endure what is to come. Pray that we can be here as a support to her and help her through this.
- Send pictures or notes of encouragement. Paige can’t focus so much, so reading is hard. But a simple note that says “you got this” or “way to go Paige” or “we have faith in you” are really uplifting to her. I will hang them around her room so she can see them when is in there.
- Amazon, if you want to send something to Paige to make her smile, I have set up a list of things she needs and some wants. The needs obviously help her, but the wants are a small little pick me up during all of this.
- PayPal, this isn’t cheap! Her appointments, medicine and therapies are over 60% of our gross pay and each month that goes up a little bit. We CAN NOT afford this on our own. We hate asking for money, but it is needed. Without your help, we cannot treat Paige. It is as simple as that. It is only through donations and fundraisers that we continue this course of treatment for Paige.
If you have PayPal, you can send direct as a friend and we won’t be charged the 3% fee PRIDERECON@AOL.COM
If you don’t have PayPal, you can send through this link: PayPal.Me/jennifervanbreemen
- Pray! Pray some more. For all of us. I am mentally trying to prepare myself for what is to come, but I know it will be harder than we imagine. Pray for Jim and me, at we can stay strong and be there for Paige as she needs it.
- Give grace. I am really trying hard to keep everyone up to date, but time does get away from me. I am also trying really hard to stay on top of thank you notes, but that just isn’t happening. Please know that we appreciate EVERYTHING everyone is doing, even if I don’t get a thank you note out. With 6 kids, a house to run, school to teach and Paige to take care of, I am not as on top of things as I once was. Please extend grace if I don’t get a thank you note out or if it takes me several weeks.
- Visit the fundraiser page we have set up. We always have some fun way to help Paige out. Right now, it is with Lilla Rose clips. In July, it will be with an auction. Check it out and share it far and wide.