Phone Appointment w/ Dr. J

Hello Everyone! I have intentionally not made a post until today because there just hasn't been that much to tell. That is good I think. :) My liver enzymes were in the normal range after my last treatment segment. Praise the Lord! That is so important as I go through each round. Brian's interviews went extremely well last week. I am so proud of him!!! He has one more this week and we are officially playing the waiting game. We should hopefully hear something in the next couple of weeks as to if he will be called for second interviews.

Now onto my phone appointment with Dr. Jemsek. I know a lot of you have asked me how it went and please know, I wanted to respond to each one of you personally. It's just been one of those draining days. Hopefully, I will be able to "catch up" with each of you soon! So, here is a summary of my phone appointment....

It was good to talk to Dr. Jemsek. My experience with him has been nothing less than wonderful. He is SO knowledgeable and was very patient today in explaining things to me. It's hard to do everything over the phone, but we are so thankful he is willing to do this for me as I am just too sick to travel. We started out my appointment going over my current medication and dosages. We then started talking about the "herx" reactions I had experienced. I told him about my last experience w/ the drug Flagyl and there was so much pressure in my head that I felt like my brain was swelling into my skull. The pressure feeling didn't completely disappear until 5 days later. He explained to me that it was a result of the cysts (the sac-like formation that the lyme bacteria sits in) bursting. When they burst, they release fluid made up of lypoproteins. So, the pressure I was feeling was a result of the build-up of the fluid. He did inform me that kind of reaction is to be expected, he was just shocked at how severe it was with me being on such a low dose treatment regiment.

Then he told me something that none of us really want to hear. He said I was a very sick girl and that my herx reaction to Flagyl told him a lot. I guess it's hard to tell how much the bacteria has invaded your system or what damage it has caused until you start treatment and review the reaction to it. It still is something that you don't ever really want to hear. He also said that we are in for a LONG road (years). He said that with how allergically sensitive I am and also how I have such strong herx reactions at such a low dosage treatment regiment that we are going to have to take this very slowly. He is not changing any of my antibiotics or the frequency of my dosages. He is only going to add another drug to continue to help calm my autonomic nervous system.

Another difficult piece of news that I received was that he does not know if orals will be enough to attack the Lyme that according to him "has caused so much damage" to my system. Orals just do not cross the blood-brain barrier as well as IV's do. He said there is a good chance that eventually we will have to resort to IV medication. That was a big blow as the IV treatment protocol is very tough to go through and extremely expensive. Most insurances won't cover the cost and if they do, many times they will only pay for one month. To give you an idea, I have heard that out of pocket it can cost about $4000 per month. The IV treatment usually lasts about 3 months. So, as you can see, that is why it's kind of a big blow. He did say it would be a very long way off (over a year he thinks) because I am just too sensitive to be able to tolerate an intense IV treatment protocol in my current state. We will definitely be praying that we will not have to resort to this, however, I wanted to write what I was told today.

Finally, as you know from a previous post, my doctor is moving his practice to Washington DC. He did say he would like to be able to see me more often, however he does realize how sick I am and how detrimental it would be to my body if we tried to make the trip in my current condition. Thankfully, he is willing to work with us through phone appointments. My next phone appointment will be in January. He did say he would like to try for us to shoot for an office visit in the spring, but only if I can tolerate traveling.

So, that further says to us that if possible, we need to make a move to the East Coast. Dr. Jemsek is truly an amazing physician and literally one of the best Lyme Disease doctors in the world. He takes each one of his patient's case and creates a personalized treatment plan. He has so much wisdom and has treated my case like no other doctor has. I have heard too many stories where patients visit Lyme Disease specialists and they are only one of the masses. They get stuck in a protocol in which the doctor refuses to budge or adjust anything per patient. We feel we need to move closer to Dr. Jemsek so that I can go to office visits more often. Brian has applied to a few accounting firms that have locations in Atlanta, GA. If you could please pray that a door would open at one of these firms enabling us to make the big move. Either that or that God would heal me so that I could endure a trip via airplane. My sensitivities along with some of my other autonomic nervous system reactions would need to improve quite a bit for us to consider flying.

I start my next round of treatment this Wednesday (Oct. 14th). I am a little aprehensive about my Sunday dosages of Flagyl because of my reaction last time, however Dr. Jemsek said that I probably reached the maximum reaction and doesn't think I will have such a strong response this time. I hope not!!! This will also be the first time I will be trying to work through different parts of my treatment. I would appreciate your prayers this next week.

Well, that is the summary. My appointment certainly contained quite a bit of information that was hard to swallow, but at the same time, I know that we serve a big God, a God who is able to move mountains that to us seem immovable. We are praying for God's mighty hand to move us in the direction we need to go in the area of my treatment, a job for Brian and a possible move. Until then, we are standing on his promises knowing that in Him, through Him and with Him, we can do all things through His strength alone. Thank you so much for all of your encouragement and prayers! We will update soon.