Friday, September 23, 2011

It's going to be a long road- UPDATED!

Faith is moving ahead before knowing how! (from Rick Warren I think)

Sometimes I swear I hear the Jeopardy theme song playing in my head. It makes me feel like I am running out of time. Part of that is due to the fact that I have been holding onto a piece of news that I want to share but haven't been given the official okay to do so. I was supposed to get the go ahead yesterday and it didn't happen. Go figure. At this point the actual "thing" may have taken place before I am allowed to speak. So maybe by the time I get to the end of this update and I can throw it in. Otherwise you may get a one or two sentence update later.

*So here is the news I have been holding onto. Lyme has robbed me of some things in my life but this is a big one. As of October 5th I will no longer have a job. Lyme has robbed me of a 13 year career in the Fire Service. I am not going to let this latest thing keep me down. I have to believe God has bigger and better things for me but I will admit it hurts. I always figured that if I left the Fire Service it would be my choice. This was certainly not my choice. I will miss my Fire Department family more than most people will know. All though I have worked at a couple of different agencies in San Diego, it has been my privelage to serve the San Marcos Fire Department for the last 6 yrs. Thank you all for your support during this rough time in my families life. We will be forever greatful.

So let me move onto what I can tell you about. I can tell you that the last two weeks that I have been back on abx have kicked my butt. So many of my symptoms that had diminished have come back. I guess that means there is a mass murder of bugs going on so that is part is good. It is what I have to endure that is not. My mini seizures or twitching, the weakness and creepy-crawly feeling in my arms, insomnia, needing to sleep during the day, the list goes on...have all come back. The muscle spasms and ringing in my ears is probably the worst it has ever been. I am not back at my worst but probably not far from it.

With that being said, when the doctor asked this morning if I had any improvement I had to say no. He responds that I am "a tough nut to crack". Ya think! I could tell he is frustrated for me. We discussed a number of different things at this quick visit so here is the run down. He doesn't have a strong opinion on that MRS 2000 mat thing that I tried a month or so ago. He says it works for some, not for others its just up to me if I want to try it. He is not as supportive of HBOT therapy as I thought. He is not against it but has not seen any real results in his patients that have used it. He prefers a cheaper therapy called ozone instead. You have some blood taken out, ozonated, and put back in. (I know that's not really an explanation but the general idea) It is supposed to do some good things. He definitely likes the Rife, coil, what-ever-you-want-to-call-it-machine. He gave us the name of one to check out. So I need to look into that when I am done here. We definitely talked about this IV rifampin deal. As most of you know, we still haven't been able to get this medication. Up here in the states, it would be about $4000 for 2 months and my insurance won't cover it. In Mexico, it should be closer to $600 for 2 months. We just haven't been able to track it down. He believes in this so much though that he still wants us to try and do this. So we are continuing to tap our family resources through friends and contacts to find it. My doc is trying to go through a Mexican hospital and see if he can buy it himself. I am just praying we can get this soon and get going. We are prepared to make the trip we just need a location that has it. He also clarified the 60 days straight would be a minimum. To really give it a shot we should go for 120 days straight. Minimum of an hour a day for a 120 days...sounds like fun. Guess it would be a good time to read my Bible. Then we may switch to another IV med, that is knew. He basically called it "super rocephin". Needless to say it looks like I won't be done with IV's anytime soon. He did say I should be doing fish oil and also to try something new...bamboo extract. Easily have to be at about 40+ pills a day when I am taking everything with these new additions. You wouldn't think I would have any room left for food. I know you have heard it before, but once again I am going to try to buckle down on the diet. That is probably my biggest challenge...quick/easy, taste, and money have always won out over the alternative. So I will try once again to change my eating habits. :)

I know this maybe backwards but now on to the real reason for my appointment today. "Your blood tests are too complicated to give you over the phone, the doctor wants to see you." That is the message I got from my doctors office earlier this week. Too okay. I figured it meant something was not "normal". With this disease though nothing is ever normal. So after we discussed everything else I asked for my complicated results. My CD-57 is up to 60. So that is good. It needs to much higher but 60 at least means my immune system may be functioning on some level. Candida levels were good. YAY! Vitamin D is finally normal. So 15,000 units a day of Vitamin D it is for me. Now the not so great news. I have high/positive tests for four other viruses. Now this wasn't a complete shock since I know a lot of Lymies have these issues but it still doesn't make me happy. It doesn't mean that these are infections are current but they are present in my system. I don't know enough to say how common it is for them to reactivate or what even their dormant presence does to my system but bottom line is I don't want four viruses, two co-infections, and lyme hanging out in my body. That is a lot this body has been enduring for all of these years. Here is the list...Human Herpes Virus Type 6 (HHV6), Epstein Barr Virus (EBV), Mycoplasma Pneumoniae, and Chylamydia Pneumoniae ( and no this is NOT the std). The last two are forms of pneumonia which I have had at least twice growing up. So anyways, maybe this plays into why things haven't been as easy to solve. I haven't made the improvements the doctor expected.

Lots to think about for sure. With that, I guess I will have to come back a little later with my other piece of news. Still waiting for the official okay to say something. I guess nothing super bad will happen if I spill the beans first but I am using my patience and waiting until I am supposed to.

P.S. My wonderful extended "family" is working on a fundraiser to help my family out. I will keep you posted on the details as I get them. Thank you for all your hard know who you are! I love you all.

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