Holding Steady!

Hello everyone! I wanted to write an update about my phone appt. w/ Dr. J. The more treatment we do and the more medication I am on, the spacier I get, lol. I told Brian that he is going to have to be conferenced in on the next phone call because frankly it's a bit of a blur. However, I will do my best to remember the details. :)

Since starting treatment, we have noticed a couple of things. The more rounds I do, the more difficult it gets. That is because my immune system is actually starting to fight the bacteria instead of letting it lie dormant in my body. However, it definitely is not pleasant. We have also noticed that when I am on treatment I herx (symptoms that appear as the result of a die-off reaction of the Lyme bacteria) a lot including an increase of pain, dizziness, nausea, a racing heart, fatigue, insomnia etc.. However, my sensitivities actually stabilize. Yay! Dr. J's method of treatment is pulsing the drugs (taking them every other day and then having one or two week breaks between treatment segments) which he feels like is the best treatment method because it allows your body to recover. However, the worst part about gaping treatment for me is that my sensitivities seem to get worse when I am not on the antibiotic therapy. Dr. J explained that this is because while on the drugs, my immune system is ramping up to fight the Lyme and progress is made. However, when I take the necessary rest between treatments my immune system is still reved up, but no longer has the antibiotics to help fight the Lyme and so it causes an over-reactive immune system resulting in a TON of allergic reactions. As you can see my case is very complicated.

Dr. J was honest and said that he is not going to pretend to know exactly how to develop a treatment plan for me because how I have reacted to Lyme is very unusual. However, he did say he has one patient who has identicle symptoms to mine and he has had success and no longer has as many sensitivities which has led to a better quality of life. That was SO encouraging. He is the first doctor to not try to put my symptoms in a box and throw a treatment plan at me. He told me he would get me well, but emphasized again how long it would take because of how slow we have to go.

So, as a result, Dr. J said I am still too sick to ramp up my treatment. I was really disappointed because I saw how the antibiotics helped stabilize my reactions. However, he said because my allergies/allergic reactions basically explode after I am no longer on the treament, that if we ramped up treatment now, during my resting weeks (or drug holidays as we call it), I would be extremely ill. He said it would do more damage than good. Even though it was hard to hear, I have to agree with him. I am down to only being able to eat 3-5 foods so we definitely don't want to take a chance of losing those. He gave me a medication to help me sleep (since I sometimes can't fall asleep until 4am) and then also wanted me to try another supplement and increase two medications that I am already taking.

Thankfully, he said that I was way too ill to travel and told me he would not allow me to come to an actual office visit until he thinks I can handle the trip. What a relief! Brian and I were racking our brains trying to figure out how, in my current state, I would ever get to Washington DC. We are always so impressed with how willing he is to sacrifice so much for his patients. Most doctors would never let you gap in office visits. He was also very compassionate on the phone call and even commented how hard the isolation and restrictions must be for us. For six years, we have lived like this, and we have never had a doctor say that to us before. He truly is a gift.

We did talk about the future and if at some point I would have to switched to IV treatment. He said he could see that IV (through a picc line or port) might benefit me as I could infuse saline, minerals and do other detoxification treatments, but antibiotic infusions I would definitely not be able to handle for a long time. On the flip side though, he also thinks at this point I am probably too sensitive to tolerate the procedure and the infusions. So, that is a ways off. It is our prayer that I will improve with just oral medication as treatment by way of IV is astronomically, mind boggling expensive because insurance will not usually cover the cost.

So, that is a summary or at least the details that I remember. Ha! If you could be praying that I will be able to tolerate the new meds and that my system will calm down and I'll be able to sleep, we would appreciate it. Dr. J said I cannot step up treatment until those things happen.

On to other things....Brian started his new job last week and loves it. His last day of working at the grocery store is today and I could tell he was super excited. :) He loves what he has done so far at his job and thinks this career will be a perfect fit! I start school on Monday. I am a little apprehensive about this semester as the classes I am taking are going to be extremely difficult and time consuming. Maybe not stepping up on treatment yet is a blessing. It's nice to know God's timing is perfect, it's just the waiting game that I kind of stink at. Ha!

Speaking of waiting game, today we looked at a house, loved it and are going to put an offer on it. AHHHH!!! This is an actual house, and it's not a short sale so if they accept our offer, we could be in contract by the end of next week. That is exciting and scary at the same time! The house is a beautiful ranch that was built in 2005. It's super clean and a perfect size for us. I'll post pictures once we know for sure we got the house. You never know these days, and we aren't sure if there are other interested buyers. So, if you could pray that God's will would be done we would appreciate it. We only want this house if it's God's idea because obviously it's a HUGE commitment. We think it will be great for my sensitivities and I could go on and on about the benefits. However, we are just laying it in God's hands and asking him to move (or let us move...no pun intended there, lol).

Well, that is all for now! I will update later next week or once we find out whether our contract has been accepted. Exciting times! Thanks for all of your prayers and encouraging words. It means so much to us to have family and friends who support us. Blessings!