Here is an update from Paige’s doctor’s appointment today. We are sharing more as ‘informational’ and not ‘let’s tell the vanBreemen’s what to do different’. I say this often and I will say it again, I TOTALLY understand where people come from when they offer advice and give suggestions, I really do. I know that we have been every open about our journey and that also opens us up to critique and suggestions. But please keep in mind, that we are paying a lot of money to take Paige to a highly respected doctor in the Lyme community. She has Lyme herself and has successfully treated over 1,000 patients. She also works with 2 Lyme Literate MD’s and she has consulted both about Paige and her care. All 3 concur that we are doing what is best for now. This does not mean it will be best down the road, but for now, we are doing what is best for Paige. I assure you, that Jim and I want nothing more than to heal our daughter and we will stop at nothing to see that happen. Even it means going down a road we had hoped to avoid. While messages are well meaning, they are overwhelming and take time away from my family.
With that being said, here is the good news and bad news from today’s visit. Our visits always start by going over Paige’s list of symptoms and saying if they are better, worse or the same. We noticed that a few are better or gone (praise the Lord), but that many were the same or worse. Her doctor was concerned that several are getting worse and staying worse. With Lyme, you want things to be changing daily, if not hourly. You don’t want symptoms hanging around for days or weeks on end. Her doctor was glad to hear that she is not having as much roaming pain, but it is more localized. This means that the Lyme isn’t migrating as much and if finding a safe place to hide. This will make it a little easier to treat. She was happy that her migraines are just headaches and are down to only 3 days a week or so. She was happy to hear that she had a good day on Monday. However, she is discouraged that she is back in the wheelchair, still not eating enough, still losing weight, still having issues with hand eye coordination and several other things that have decided to stick around for too long.
As for the Lyme bacteria, it is replicating at the same rate as it is dying. This means there is a large amount of die of, which means lots of neurotoxins, but is also means a high count of active Lyme. The high levels of neurotoxins are what is making her brain ‘crazy’ as her doctor put it. The increase in Lyme is what is causing the upswing in her neurological episodes, forgetting things, mood swings and her walking and balance. We have added yet another medicine to help eliminate the neurotoxins and upped a couple of other medicines. Her doctor says when we switched gears and went after the Bartonella and Babesia last month, that the Lyme took advantage of that and went hog wild. (I love our doctor, she speaks in terms we understand)
Her ammonia was at a manageable level, which is really good. That has been an issue in the past and with one of her gene mutations her body has a hard time processing ammonia. We are glad that we have a plan that is working with keeping the ammonia manageable.
Last month her doctor started her on products to aggressively go after the Bartonella and Babesia, and that seems to be working. Her cerebral spinal fluid only showed DEAD Bartonella and Babesia. Praise the Lord. This was our first area of concentration. It also show that they are starting to come out of her cells, also great news. She is showing die off at a greater rate than regeneration and that is great. Her body seems to be tolerating the aggressive treatment and we have decided to stick with it since it seems to be working.
Her doctor thinks it may only be 4-6 months until we can say that she is clear of Babesia. She said it is a gift from God that the Babesia is dying off this easily ‘finally’! It is usually a really hard co infection to treat and it looks we have finally found something to go after it. NOW, while this is great news, we also know that Lyme and its infections are tricky and things can change next month, but for now we are taking the good news!!
Mold, that is still an issue. We were assuming that they were spores from homes in the past, but upon more testing today, the doctor says that they are active. Doing some indexing, muscle testing and mental readings with Paige (I know it all sounds weird, but we have watched it and know it works) we have narrowed it down to her mattress. All of our beds came with us from the mountains, where there was black mold, and were also in our last house that we had to move out of after 6 weeks due to the kids getting sick because of black mold. SOOO, we are to replace ALL mattresses as soon as possible, but the ones in the girls’ rooms need done like yesterday. We need to replace the girls mattresses, treat the walls and flooring with Grape Fruit Seed Extract and tea tree oil, wash all of her bedding in HOT water with bleach and replace pillows. This won’t be cheap, we aren’t sure how we are going to add this into the budget, but we have to do it. Her doctor really things the mold spores in her intestines are what are keeping her from eating and gaining weight. So please pray that we can find a way to at least buy 2 twin mattresses for Paige and Samantha. We are continuing with the treatments for mold with Paige and we are to start everyone else on it as well. She said she would be surprised if not everyone has active mold spores 😦 The mom guilt has set in again that I have my kids sleeping on things that can make them sick, but I had no idea that the spores would live in the mattress from past homes.
We talked about Paige, her spirit and depression. After some indexing the doctor concluded that Paige is identifying with her Lyme and Babesia. Both of these infections are physiological, which is why she is struggling mentally. She also says that she is having ‘Lyme guilt’. She doesn’t realize it, it isn’t intentional, but it is changing her perspective and making her see things differently than she had in the past. We have some tools and exercises to help her overcome this and we have added in some herbals to also help. She will take these 3 times a day and add in as needed. We discussed prescriptions for this, but her doctor believes that these exercises and herbals/florals will help. If they don’t, we will get a prescription next time. I am to have communication with her doctor weekly to keep her apprised with Paige’s mental status. She wasn’t surprised that she is feeling this way when she saw the amount of Babesia die off, but she still wants to stay on top of it. Babesia is a ‘dark’ infection and it can affect your mental status and really become a part of you. So, we will be watching this closely over the next several months.
Antibiotics…we discussed going this route again. The doctor asked Paige how she felt, asked me how I felt and asked Jim how he felt, then she told us her opinion. She doesn’t think that she is clinically ready for antibiotics. She feels like we haven’t exhausted our efforts down this route yet. She says that she is seeing enough positives to feel good about staying this course. She shared that she keeps in constant contact with Dr. Yang and she agrees. However, we are all aware that they may become a possibility and are ok with going that route if it is needed. I know several will wonder (but not message me 😉 ) why we don’t feel she is ready. First, the antibiotic route is HARD on the body. It is a rape and pillage route of getting rid of Lyme. Patients really do feel like they are dying. It may only take 3-9 months, but is so hellish, that the patient loses part of them, their soul dies and they are forever changed. Not for everyone, but for many. We don’t feel that Paige is physically or mentally ready for this. Our doctor treats the WHOLE person (the biggest reason we chose her over others). She is treating PAIGE, not just killing the Lyme. She can see that Paige has an amazing and caring heart and she doesn’t want to kill that along with the Lyme. I know some won’t understand this, and that is ok, we just ask that you respect the choices we are making. We really are trying to do what is best for ALL OF PAIGE.
So quick recap, Lyme is having a hay day, Bartonella and Babesia are on their way out, Paige is showing signs of depression which is normal and we are starting to treat that, ammonia level are good but neurotoxins aren’t, mold is an issue and we have to replace mattresses ASAP and antibiotics are a possibility, but not right now!
Thank you for your prayers and encouragemen, they really are all that keep us going some days. I joked that I need the herbal/florals as well for depression and when her doctor realized I have 4 teenagers she agrees 😉 I promise to keep everyone updated as things change, for better or for worse!