Monday, November 22, 2010


I couldn't figure out what to call this post if you couldn't tell. My brain is not at it's full working potential suprise, suprise. This may just be a quick update or I may get sidetracked and go on forever. I never know. Well anyways, I want and saw the doc today. We discussed a lot of the same things I discussed with my LLND last week. I also needed to clarify for myself what a herx really was. I just wanted to make sure that I was accurately relaying to my doctors what was going on. So my average day to day feeling is just how I feel with Lyme. The days that I get slammed with pain or extreme fatigue or twitching, those are herxes. It does make sense that I seem to have more herxes about every 4 weeks. If I understand correctly, about every 4 to 6 six weeks the Lyme bacteria spread or hatch. During that time my meds are killing those bacteria which then in turn causes them to release toxins. Thats why I herx. Once I got that straight, we discussed the use of Levaquin just in case I have Bartonella. The doc agrees. He just said to make sure that if I started have tendonitis type pain or joint pain (I'm guessing it is different than the joint pain I already have)that I stop taking the medication. I guess all I can do is try it. I asked how do we really know if what we are doing is working? He said it really has to do with how I feel. I don't feel any better yet for sure. He said we may see an increase in my CD-57 numbers also. We decided to do a bunch of blood work (7 viles). I know we did another CD-57 and a heavy metal screening test. The heavy metal screening I guess will give us an idea if we should do the other testing for heavy metal. Then we discussed the chest port. So it is an out patient procedure I will have done at the hospital. We are shooting for the first or second week in Janurary to have it put in. The medication may have come down in price a little it looks like $20 a day or $80 a week since I only use it 4 days a week. I still do not know how much the rest of the supplies cost but I am hoping to come in under that original $250 a week number. The doctors best guess on procedure price was $4000. I have called the hospital twice and left messages and still gotten no return phone call. One of the calls was last week. I figure they would want to provide you this information so you can make your plan ahead of time to pay for everything. I did talk to the insurance today and it sounds like I should have no problem getting coverage for the port placement. If the $4000 is right, we will pay about $1300. At least I feel like we are getting somewhere. The doctor did offer to refer me to some good docs in Mexico that will do it for half the price. No offense intended but I am not comfortable with that for a few reasons. I guess that covers the doc appt for the most part. I am interested to see what my blood work says. So I go back next month for a followup and the blood work needed for the port.
Nothing new with disability. My appeal is being reviewed by an infectious disease doctor. I won't call to check up until next week. I am sure they are off Thursday and Friday like most people so that will slow things up a few days. I am trying to not worry about it all but as I have said a hundred times, it is hard. I know God has provided so far and I am sure He will continue to do so. It is kind of funny that we got hit with an unexpected bill (very long story) and we are just to the point where things the money is really starting to get short. Just when I got down about things this weekend I got a message from a friend who has something up their sleeve. We haven't been able to connect yet so I don't know what's up. Big or small I am excited and reminded that once again we are not alone in this. I will admit I am really working on trying to change my approach to this holiday season and my perspective on things. Over the last year or two I have tried to not spend so much on the gifts. I know that is not what the holiday is supposed to be about. I realize now how much I let it dominate the holidays. I enjoy giving gifts to other people. I want to be in line at the Starbucks drive through and be buying coffee for the people behind me. I want to try and make a "black friday" shopping trip. Those are some of the things I am having to give up this year. I know we are going to be blessed with an amazing Christmas and that we have so much to be thankful for this is just going to take a little getting used to. This year more than any so far, it will be about the Birth of Jesus and the blessings of friends and family and our time together. That is what matters most. We can have a wonderful time without all of the stuff and spending all of the money. I guess it is time for some new traditions! I hope you all have a wonderful Thanksgiving. I especially pray all of my fellow Lymies feel good enough to enjoy some great food and fellowship with those they love this week.

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