Saturday, January 26, 2013
What's been Happening?
During that good week I had an unbelievably stressful day where my dog got lost, my car went off into a ditch while I was looking for him, and I had to listen to some of the most insensitive and condescending comments about chronic Lyme that are humanly possible (from an acquaintance who is a doctor!). I had a minor breakdown from the stress, but nothing like how that would have affected me normally. I found my dog and some very nice people lifted the back of my car out of the ditch with their hands so I didn't have to call a tow truck on a Sunday. Plus I finally decided to stand up to the doctor's arrogant misinformed opinions by stating some facts based on ILADS research.
The doctor situation is aggravating. I have a working relationship with this person and he is the most anti-Lyme doctor in the entire area. For that reason, I've never outright told him my diagnoses. I'm sure he strongly suspects what I have now after our conversation the other day. Not many average people are aware of cystic forms, CD57's, babesia etc. I'm not medically trained. I normally keep my mouth shut, but his comments were unbelievable. I had to say something. If he fires me for being educated, there are worse things that could happen. Although instead of being educated, he groups people that seek long-term treatment for Lyme into the following categories: "hypochondriacs, naive, brainwashed, ignorant, and just trying to seek disability" LOL. See why I avoid talking to him?
My LLMD and the rest of the office could tell I was feeling much better when I saw them during my good week. I'm glad they finally caught me on a good day so they could see the difference in my attitude and how I am normally. I was so happy. It was great to have a break from symptoms. The main break was from the psychological feelings that this is never going to end. My physical symptoms were still sticking around during my good week but they were easier to handle when I didn't feel completely hopeless and depressed.
The methylcobalamin is working miracles for my mood. It helps me get out of bed and have a good outlook. I'm able to figure out ways around the symptoms and stop myself from getting completely frustrated and giving up. It doesn't give me sustained energy though. I can feel the energy surge wearing off by the afternoon.
We talked a lot at my last LLMD appointment, but didn't change anything drastically yet. I wanted to change the way I take Flagyl to all at once in the evening instead of 3x per day. I take 750mg at night now. My reasoning for that was concern that Rifampin is lowering the bioavailability of Flagyl. I'm thinking a higher dose 1x per day will result in a higher spike in blood levels. My LLMD said it was fine to try that as long as I didn't get any GI side effects (which I never do on any medications oddly).
We talked about artemisinin a little bit. Over the next week or so I'm going to start it. I believe that some of my very resistant symptoms and the lack of drastic or permanent improvement could be due to babesia. Over the past 1.5 years I was only able to treat with Mepron for about 6 weeks at a time. I tried it for that length of time twice and both times had to stop for liver enzyme elevations.
The dosage that I'm going to start with for artemisinin is the Nutricology/Allergy Research brand Super Artemisinin 180mg. I will be starting with 2 pills 3x per day for 3 days on 11 days off. The theory behind the pulsing (according to a Seattle LLMD who uses it this way) is that your intestines develop an enzyme by about the 4-5 day point on artemisinin that renders it ineffective. So I'm starting at the middle dose. You can use up to 500mg 3x per day for 3 day pulses according to this LLMD. Another option is to do the low-dose daily schedule that Buhner used to recommend. He no longer suggests Artemisinin due to side effects. He now uses Cryptolepis and Sida Acuta. I can't really afford to dish out that much on those tinctures. I know that a lot of the "big name" LLMD's are still using Artemisinin and pharmaceutical relatives like Coartem because they feel it is the strongest of the herbs. For now, I'm going with that.
I also talked to a doctor about my appetite. I'm losing too much weight. It was bad enough when I was hungry and eating. At least I knew I was getting nutrition. Lately I have no sense of hunger and I've been eating next to nothing. Size 2 jeans that I bought a few weeks ago are falling off me now. So I asked for some help with that. The doctor I asked is not my LLMD, but an ND who knows I have Lyme and how I treat it. He suggested Gentian in a tincture to increase appetite. I was VERY worried about taking this since it contains alcohol and Flagyl and alcohol don't mix, but he said it should be fine and so far I haven't reacted.
I haven't had an increased appetite since starting Gentian. The only thing it does is give me a bad taste in my mouth so that it makes it more likely that I will eat to get rid of that taste. Maybe it takes time to work. I'm not sure.
I wish I could say that I'm still feeling great and going for walks but unfortunately this week has headed in the complete opposite direction. I'm flu-like, feverish, I lost a lot of feeling in my legs the other day to the point that I couldn't stand up for a while, and I'm very weak, tired and spacey again. I'm also having a lot of heart palpitations and joint pain. However, I'll take physical symptoms over psychological ones any day.I feel so out of control when the anxiety and depression come on. I'm glad I'm able to keep that in check naturally.
Posted by Key Lyme Pie