We're Back!

Boy was that a fast trip to California! I apologize for just writing this post. We were pretty exhausted on Sunday, and even though I had every intention of writing a post that day, it just didn't happen. I didn't get a lot of sleep on the trip because of my insomnia and the chemicals in the hotel. Brian was super tired too as he did most of the driving because of all the meds I am on. I have such a wonderful husband! He sacrifices so much for me, and always is concerned about how I am doing or how he can make me feel better. What a precious treasure! Let me get to the details of our trip...

On Thursday morning, we left at 4am. I know, pretty insane huh!?! It's about a 14 hour drive with stops. My food schedule doesn't fit well with travel since I can only eat specific foods and most have to be cooked. So, it's always important we get to our destination by dinner. We had a great trip! It was wonderful to spend time talking with my husband. We made it to our hotel about 7pm that night. The hotel staff was wonderful. They cleaned the hotel to our specifications (no chemicals); however, unfortunately, if they use an air freshner or clean with chemicals every other time, it still is in the air. Last time, we didn't notice any smell in the room, but this time, it was definitely there. Thankfully, I didn't react too bad. I didn't feel good, but it wasn't debilitating. We were able to stay there without any adverse reactions. The pollen count was extremely high (we could see layers of it on our car), so that compounded the problem. Still, God protected my body from any horrible reactions. I just felt pretty awful while we were there. However, I can live with that! :)

On Friday morning, we were able to go to the Golden Gate Bridge. We couldn't stay there for very long because of my allergies, but we were able to at least see it this time. God parted the fog and by the time we got to the bridge, it was blue sky! We got some pics. I will try to upload those in the future. It turned out to be a beautiful day.

My appointment with my Lyme doctor was at 2pm. It went very well. I think I have mentioned this before, but this is the first time we actually met with my Lyme doctor. I had been working with his PA and NMD up until this point. I don't think I can say enough good things about my doctor. He has a wonderful personality. He is pretty relaxed and really funny. He made us feel at ease right away. He is also brilliant! He had so many ideas for us about how to help me improve. He is very experienced working with people with chemical sensitivities, and his knowledge about Lyme Disease and co-infections is incredible. We feel so blessed to be under his care.

We were told some good news. First, he was happy to see that Rifampin had enabled me to make such great improvements. He feels like Bartonella is the big culprit as to why I still don't feel great. So, we are going to work on that. He addressed my chemical sensitivities, and said that because my chemical sensivities reduce when I do enough detoxification, he doesn't think that my chemical sensitivities are a permanent condition. This was so AMAZING to hear! Brian and I have had this question for quite some time. We were unsure if my chemical sensitivities would be a permanent condition caused by the length of time I have been sick and also how long I took steroids when I first got sick. Steroids and Lyme DO NOT mix. This is when my chemical sensitivities first appeared. However, my LLMD thinks that once we get the infections under control, my sensitivities will improve. That would be amazing and finally allow us to get involved in a church body again. What a day that would be!!!

Another thing we talked about was my allergy to formaldehyde. He actually gave me some supplements that will help draw that chemical and ammonia out of my cells. He said that when you are exposed to formaldehyde like I was in the new construction building I worked in before my health took a plunge, it sticks in your cells for years. So, we are going to be trying to draw that out of my cells in hopes that it will reduce the burden on my body enabling it to heal more quickly.

As far as antibiotic treatment, we are going to stay the course but increase the intensity. I am going to be doing Rifampin for 7 days a week instead of 3 or 4. YIKES!!! I do get to stay at a smaller dose, but I do not get any time off. It will be interesting to see how my body tollerates this. By the end of day 4, I am usually pretty sick. He also wants to add another drug from the same family as Rifampin. This drug actually stays in the gut to fight the bugs that reside there. He feels pretty strongly that is where my main bacteria load resides because of how quickly I improve when I get the toxins out of my system. To be honest, I am dreading adding this drug on top of increasing Rifampin. However, at the same time, he did say that we could kick Bartonella within about 4 or 5 months. That is SUPER exciting!! That will help me push through the not-so-fun side effects. I am excited to be getting to the other side of this! He does think that we have made great progress with Lyme Disease, so we are just on a maintenance protocol for that infection. My doctor also gave us some great ideas to help me detox even more. He said he wouldn't have me get a snake bite at this point (he was kidding), but he did tell me to take some pretty strange stuff including yucca root and a supplement derived from the prickly pear cactus. He is the best of both worlds. He an amazing western medicine physician, but also uses a lot of natural and integrative medicine. It's important to have a good balance on both sides.

Finally, we were told some information that was very exciting to us. As I have written before, Brian and I have always wanted a family; however, with how sick I have been, we have wondered if that day will ever come. We have noticed improvements in the last couple of months, but we have been cautiously optimistic. Before we could even ask, he actually brought it up. He said he couldn't promise what my chemical sensivities would do, but had no problems with once we get the bartonella infection under control if we thought about a family in the future. We were absolutely shocked! There is a lot of literature about pregnancy and Lyme Disease, and if you do a maintenace treatment of antibiotics that are okay for pregnancy, there is a VERY good chance the baby would be completely healthy. We trust his judgement. He has treated thousands of patients. We know that there is always a risk, but I guess in our opinion, pregnancy is always a risk. We aren't planning on pursuing this anytime soon, but it's just nice to know that we don't have to necessarily close the door on one of our dreams.

I have a phone appointment scheduled in about one month with his NMD, and then we will see him again in the office on September 9th. Hopefully, when we take that trip, I will be greatly improved. We have so much hope for the first time in a LONG time!

Now, we do have some important prayer requests. I have to get on quite a few new meds and supplements. Obviously, this is usually pretty difficult for me, so please be praying that I tolerate these as they are all very important for my health. Also, we have been looking into having me try acupuncture. There is a lot of medical reports that it helps in a variety of ways including boosting your immune system (which I desperately need some assistance), helping your body to detox naturally, improving insomnia and also assisting in regulating hormones. We feel strongly this would be very beneficial; however, it is really expensive. We did find someone local who has worked with a number of chemically sensitive patients, but the sessions are between $50 and $75, and once again insurance doesn't cover this type of treatment. I would need to go once a week, and as we assessed our finances, we just can't do it at this point. It would be too much of a hit each month. So, we are going to work on trying to save for this therapy. If you could be praying that God would provide financially so that I could obtain this treatment, we would appreciate it. The World Health Organization and the National Institutes of Health even report the amazing benefits of this type of treatment. All in God's timing!

Finally, if you could be praying for Brian. He was able to study a little bit on our trip, but he has a lot to do in the upcoming two months. He is not behind at this point, but he is traveling out of town for business the week of the 23rd, and he is tired. Please pray that God would give him energy to be able to finish his class and the last section of the CPA exam. He is one amazing guy, and he deserves to finish successfully. I have confidence he will do it, but please be praying for strength and that God would multiply his time.

Thanks for praying friends! We are blessed to have such wonderful support!