Waiting, waiting, waiting

Hi! Sorry, I have delayed in posting after my appointment last week. It's been a rough four days physically, and I have been trying to tackle a huge portion of my huge graduate project. It's been good to be distracted as Brian has been gone on business; however, he comes home today!!! Yay!!!

It's been pretty interesting since we have been in the "in between doctor transition". When I was previously on Dr. J's protocol and I stopped treatment for about a month, I actually felt good. However, there was a doctor switch and a med changes and ever since then, whenever I gap treatment, I am just getting sicker. Last night was pretty difficult to get through and probably magnified by Brian being away; however, I had horrible vertigo (the world just wouldn't stop spinning), numbness all over my body lasting up to an hour at times and just felt achy like I had the flu. So frustrating! I have also noticed the "oh not so fun" cognitive issues popping up again. Ugh!! It's hard when you have to wait to see doctors because they have such long waiting lists. I will be SOOOO excited for my appt. in Phoenix on July 7th. This doctor seems like she will be the best fit for me as she specializes in Multiple Chemical Sensitivities (MCS) and Lyme Disease. Lyme Disease is tricky enough to treat and many patients have to experience years of treatment and see multiple doctors before the right protocol gets them well or at least puts them in remission. What works for someone does not always work for someone else. So, it's very challenging. Then, when you add in the chemical sensitivities and the insane allergies, it makes it even worse. It's hard when you are so allergic to meds and supplements that you can't take what you need to get well. So, that is why we knew it was time to pursue not just a doctor who specializes in Lyme, but also a doctor who specializes in MCS.

I did get a recommendation from someone about a local ND (Naturopathic Doctor) who works with Lyme patients and also has experience in MCS. We saw him last Friday. It was a good appointment and he was very nice and you could tell he has done a lot of research on Lyme Disease; however, it seems like what was missing was his confidence in knowing how to treat MCS patients who have Lyme Disease. He was honest with us (which we appreciate!) and told us that I am such a tricky case (that is not an unfamiliar comment, lol). However, it seemed like we were focusing too much on what we can't do instead of what we can do. He did do some testing and said I "should" be okay with some supplements to help with detoxification. I haven't tried them yet because Brian has been out of town, but will in the next couple of days. Time to be brave as it's always hard to try new things because I am so reactive. However, I am willing to do anything to get well, so I will give it a shot! :) I am supposed to have a follow-up appt with him on Friday, but I am going to move that out a week since I haven't been able to try any of the new things he wanted me to take because of Brian's business trip.

I am really looking forward to seeing the doctor in Phoenix though. I had a free 15 minute consult with her on the phone and was extremely impressed. She is very knowledgeable about how to treat Lyme Disease and all of the co-infections (I have Bartonella, Babesia and HHV6), but the best part is she REALLY knows how to treat MCS. She follows the protocols of a famous MCS doctor in Texas and said that she has been able to get her patients to be able to tolerate a lot of her Lyme protocols because she also treats MCS at the same time. What a breath of fresh air! This is the first doctor to really know and understand what it means to have MCS, the limitations and how to help you improve. If we could get my MCS under control, treating the Lyme would be easier (well, as easy as you can get when you are dealing with such a complex illness).

So, that is an update! Brian has been in sunny CA at a training conference for his accounting firm. He has been stuck in the classroom all day, so that has kept my jealousy from getting out of control (I have always wanted to go to CA...hopefully someday!). J/K I am happy for him when he gets to travel like this because it gets him away from our intense and small world. His sister is getting married on June 25th. We are so excited for her!!! It breaks my heart that I won't be able to attend the wedding because I am too sick to travel. However, Brian will be going and I am glad he will be able to be a part of it.

So, if you could be praying for a couple of things, we would appreciate it. First, that my Lyme symptoms would not get out of control as I am off treatment and waiting to see the new doctor in Phoenix. July 7th is quickly approaching, but it seems like I am getting so much worse off of treatment this go around. The symptoms can be downright scary, so if you could be praying for peace, I would appreciate it. Also, I will have to be alone again when Brian goes to the wedding. Not that I can't handle it (I've done pretty well, the last 4 days), but it's hard for him to be away when I am so symptomatic and also hard for me to get through the episodes. Finally, if you could be praying for our upcoming appt on the 7th. We are desperately praying that this will be a good fit for us as our other option in CA is about 12 hours away. What an amazing blessing it would be to only have to travel aproximately 2 hours to see a doctor!!

Well, that is all for now. I hope everyone is having a great summer! I think our AC is running constantly now, so I can definitely tell you that the AZ heat is here! :) Have a great rest of the week! Blessings!