I guess it is about time I post an update. It has been a few weeks and I just haven't been able to get around to it. Well, there was a time or two I could have but it just so happened that my brain was not cooperating at that moment. So today I guess the stars have aligned and I feel well enough and have the time to complete this task. The one thing I am really bad about with my blog is going back and reading my past posts. I apologize in advance for repeating things a bunch of times but rereading my last few posts each time would just make me tired and then I would never get around to a new post. Of course I am now wondering where to begin...
Let me start with my appointment with my llnd. In the past I have usually done phone appointments because it was just easier. My doc just moved to NY and opened a new office in Connecticut so she isn't in her San Diego office as much (a week or two a month) and it is kind of a drive. This time though, I decided to go in and see her. If I am totally honest, I really wanted to meet her new puppy and office dog, Harry Winston. I believe he is a Kingsley and he is so cute. He is from Australia just like my doc. Back to the visit- it was good to see her in person. We typically go over current meds, supplements, and symptoms and figure out what to do. This time though I had to ask what supplements were crucial and what were negotiable or could I get a generic brand of. I am spending about 400 dollars a month on her supplements alone so if I could reduce that price it would helpful. We decided I could make a few changes but they may have cancelled each other out. I can stop taking the teasel root and the CogniCare but I added in a herbal detox formula. I also added in liquid glutathione but I haven't started it yet. My doc also gave me so diatamacous earth (I know I probably spelled it wrong). She had just gotten a big bag in that she was going to try so she sent me home with some for free. I haven't tried that yet either. Just taking it one thing at a time. I would really like to keep at least monthly appointments with her it $125 a visit. I just can't pull that off. My family is already trying to come up with $1000+ a month. I know for some people that is on the low end but in any case most people don't have that kind of extra money every month. Let alone the fact that we are still short over 50% of my income. I just squeeze her in every couple of months, which has worked so far but I do wish it could be more.
After reviewing all of my symptoms and everything it was decided that we are probably doing enough bug killing but not enough to help me detox. That of course would be why I started on the detox formula. We talked about my diet which I admitted sucks. She said, lets not focus on taking things away then. Lets focus on adding them in. First thing I was asked to do consistently is have a protein shake. So far, I have been fairly consistent. I also came up with a new recipe that I absolutely love. The real test of it will be later today because I just got my chocolate protein powder but here is what I have been doing. I love my coffee in the morning, even though it is decaf. I always have some type of mocha and I was usually buying them and not making them myself. I began wondering if I could make a protein mocha and lets just say it is my new favorite drink. One of the things I have mentioned before I am supposed to do is cut out sugar, which has been fairly impossible. In some of my research, including that primal diet my other doc suggested, I found out about heavy cream. It is a wonderful thing. Rich and creamy with no sugar. If I cut out the sugar as much as possible and reduce some of the carbs the fat is not supposed to be an issue. This gave me the idea for my iced protein mocha. I make extra strong decaf coffee especially if I don't have time to let it cool down and a few tablespoons of heavy cream and protein powder. Shake it up and pour it over ice. Now I get my protein and my coffee all at once. I will admit I had to finish my vanilla powder so I was adding some Hershey's which wasn't reducing the sugar. With the new chocolate whey protein powder I should be getting about 20 grams of protein and only 1 gram of sugar. I was originally also adding non fat plain greek yogurt but that bite of the yogurt wasn't so good. I highly encourage you to try it.
Sorry I got a little off topic. I tend to get long winded when I haven't updated in a while. Back to detox. I have looked at other things that are supposed to help with detox and long story short I am trying to get one of the Far Infrared Saunas. I know a few people who have the portable tent or tube type and they seem to work just fine. I am not saying I wouldn't do one of those but my parents are looking at the big ones. I mean it is a one person one but is made or cedar or hemlock, has music, and air purifier, and light therapy. It was perfect timing with our big county fair that was just here. There was a company there selling them and I am praying my parents are able to pull off getting me one. The cool thing is the whole family (except the kids) can use them and benefit. I llnd highly recommends them and so does my other doc. I have used on a couple times and they are amazing. So we will see. If you haven't read up on them I highly encourage you to do so. You can just look up FIR Saunas and you will find a bunch of great info. It actually looked like I might get one before the fair left town but in looking at them my dad became concerned over the mention of certain heart patients not using them. I tried to reassure him I was good to go but he wanted me to triple check. Since I was going to see this new cardiologist he said he wanted to wait and see what he said. So I checked and he didnt' care. So bottom line, bug killing will continue and the main focus will be detox. I do see my other doc this coming week and will get an update from him as well.
Sorry this post is so long but a lot has gone on and I want to catch up as best as I can. So I did go see a new cardiologist yesterday. This doc was recommended by a fellow lymie and is at least lyme friendly. Now have covered a lot of my heart stuff before but to recap as quick as I can...I have had a high resting heart rate for quite a while but it was never bothersome until the last 5 years or so. I started having major palpitations, tightness in my chest, and be short of breath after climbing one flight of stairs. We started a physical fitness program at work through a grant we got and it was during my first stress test that I knew there was a problem. I failed miserably, being short of breath and having my heart rate be at about 217 less then 7 minutes into walking up hill on the treadmill. Started seeing a cardiologist and wearing monitors and running tests. Must be inappropriate sinus tach. We decided to do nothing that first year. Next year and I get on the treadmill again only to have to stop about 6 minutes in with severe left sided chest pain and a heart rate of 272. You read right 272 beats per minute. I ended up getting an ambulance ride to the ER when a few hours later my heart rate was still 150. Saw an electrophysiologist (cardiac electrician) and again IST was the diagnosis. It won't kill me. Don't worry about it. Here is some beta blockers go on your way. The beta blockers have helped a little because my resting heart rate is below 100. I still have sporadic episodes where it jumps to over 200 and I'm not even on a treadmill or it goes from 95 to 140 after climbing one fight of stairs. Probably the most bothersome thing I have been having to deal with. Well knowing that heart failure is the second leading cause of death in lymies only behind suicide I wanted another opinion. I already had seen a different cardiologist who is the head at one of the local hospitals and he said I don't have lyme and this is all anxiety and depression. Obviously I didn't go see him anymore. The infectious disease doctor I say even said she believed I had Lyme Carditis which is the prime reason I needed to do the IV's. So I got this referral and was pleased with my appointment yesterday. This doc did admit that he only knew of Lyme causing heart blockage but he would look into it. Bottom line is, things are still not working as they should. My resting heart rate of 50 mg of Toprol is usually 88 but I don't think I have ever seen it go below 80. During one of my monitor tests the lowest it ever went when I believe I was sleeping was 68. The game plan this doc suggested was add a second heart medication. If that doesn't help I will add a third. Just I want more meds. I think this second one is still a beta blocker. The third one would be a calcium channel blocker. He also gave me a prescription for a med called Rhytmix or something along those lines that I can take during an episode. He told me to try and stay out of the ER ( I couldn't agree more) and just pop two of these pills during an episode where I can't control my heart rate. I back in about 2 weeks for an echocardiogram and the following week for another stress test. At least he is pursing trying to fix it. I do believe there is some possibility of a pace maker in my future. We will see how this goes.
I guess that is about it. I will be totally shocked if anyone has made to the end of this post but thanks if you have. Don't forget to help me cover the cost of my treatment by donating to fundraising site or buying some of photos. Thanks for the support. Prayers are always appreicated and comments are always welcome.
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