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.

Friday, September 9, 2011

Going International

It's been another couple of weeks and I kind of have a lot to say but may not get to it all. The past few days have been a little crazy to say the least. I have gone from feeling blessed to defeated and back again in just a matter of moments it seems. I have had some rough days physically but for a little while I was on an emotional high. I just felt blessed despite the pain. I still feel blessed but the devil is certainly using every opportunity to tear me down. The last few days I have had a substantial amount of pain. I'm having headaches almost daily. I've had a very loud ringing in my ears and lots of muscle spasms. I have a sore throat. The pain is the worst though.

I have had some substantial changes at work that I can't really say more about right now and my treatment has just been turned upside down. I had my doctors appointment yesterday and was expecting to start back on my abx including the IV Rocephin  2x a day, 3 days a week for the next two months. After meeting with the doctor and discussing symptoms, progress, etc...he informed me of the new plan. Now it is hard to think on my feet sometimes so I didn't really ask for the whys. I just said okay. I trust my doc. Since the appointment I have had a little more time to process things. This is a big change. I am going back on my two oral abx. They are both twice a day but one is two weeks on, two weeks off. Then we are switching my IV abx. I am now going to be using something called rifampin. I have heard a lot of others lymies use it. I am finding out though that a lot of them used it orally. They were usually put on it for a co-infection called Bartonella. I haven't been diagnosed with Bart but could still have it. My doc is putting me on it for the lyme though and said it has the added benefit of taking care of a number of co-infections as well. That all sounds great so far although it has really kicked some peoples butts. Then I find out it is 1 IV a day, infused over 1 hour, every day for 60 days. So I now have 60 days straight of IV's. I have to go in twice a week to the doctors office to get my needle changed out. Not looking so wonderful anymore but okay it is what the doctor wants. Now here comes the the US this medicine runs $50 a dose or higher. The few pharmacies I checked said my insurance won't cover it and for the 60 day supply I was looking at between $3000 to $4000. That would be the reason my doctor told me I need to go to Mexico to get it. Now 10 years ago that may not have been so bad. We went to TJ on occasion which wasn't a major deal. Now its a much bigger deal. I have to get a passport which could cost me $200. I need to expedite the passport process so I can get my meds asap. The doctor is supposed to call me with the pharmacy he wants me to use. The medicine should cost me closer to $600 down there. That is still not cheap but much more doable than getting it here in the US. I am not sure though how I feel about crossing the boarder with $600 cash and having to go through customs with a bunch of bottles of white powder. This is going to take some work and a lot of prayer to say the least. So I guess that is where things are at.

I am still in a prayer over going to the Hansa Center in Kansas. I did talk with them and it would cost me about $6000 to $7500 for two weeks maybe more. That is in addition to airfare and hotel. So if I could magically pull together about $10,000 then I would be gone it a heartbeat and leave my abx in Mexico. So things are really up in the air but I serve a big God. My prayer recently has been for me to submit to God's will and plan for my life without interfering. That has always been an on-gong request of mine as you know. How much do get involved with the issues at work or other things and try to change the direction they are going. I am finally learning to stop. I asked God if could make some of these things clear to me without them making sense. Like confirm that I am on the right path even when it doesn't sense. He did that very thing yesterday shortly after I prayed that prayer. Here was the answer he gave me through a friend..."Do not make decisions based on money".  The next few weeks will be really interesting and probably life changing. Thanks for your support.