Sunday, February 5, 2012

Follow up appointment 2/4/12

I had an interesting appointment. We had a new form to fill out. That's always interesting because it takes me a lot longer than normal to figure out exactly what the form wants. However, that wasn't the interesting part. The interesting part was that it really alarmed us. I answered honestly the questions to my symptoms. There was a list of different areas and it had me circle between 0 and 4 (0 being never, 1 being occasionally not severe, 2 being occasionally severe, 3 being often not severe 4 being often and severe -- something like that). What stood out to us was the area surrounding joints and muscles. It was very high in numbers.

In any case, we discussed his last ILADS training. We discussed it last night I was there, but I was so cognitively out of it and was so fatigued I didn't remember and important part he said. He said the most interesting (and shocking) thing he learned was that they tested the lymph nodes of "Well" Lyme patients and their Lymph nodes still had the bacteria in them. So even though they had no symptoms, they still had the bacteria. *crazy*

Then we talked (and by we I mean he) talked about different protocols. We (again ... HE) talked about Antibiotics. He talked about Cowden. He talked about Buhner's. Then he started putting it all together. He said that Cowden was really a promising treatment, but that it was practically impossible in regards to how many pills there were in the day. A doctor and naturpath have gotten together to combine different aspects of (lyme fog moment here --- can't remember the name of the kinds of treatments) herbal remedies compacted into an easier formula.

So here we go again. I am going to be a guinea. Maybe I should rename the blog to "Living the Guinea's Life." I always feel that I'm on the cutting edge of treatments. I feel it's worked out pretty well for me in the past (especially that one "unmentionable" treatment that I did that I feel got me into remission for well over a year and ... believe you me, if I could get that "unmentionable" treatment again ... I WOULD!).

I am always a little reluctant to talk about my specific treatment protocols. So, I will tell you this much. I was given a bottle of capsules and 3 bottles of herbal drops. Each bottle is supposed to target a different thing. The capsules are supposed to help with detox and is supposed to help my body get ready for the 2nd bottle. I will continue with the capsules all the way through each of the other bottles. The 2nd bottle targets Borrelia. So with the 2nd bottle, I will start off with one drop twice a day. Each day I will go up one drop each dose. So by the 7th day, I will be on 7 drops in the morning and 7 drops at night. Then I will start the 3rd bottle. This one targets Bartonella. I will start it just like the Borrelia. I will continue going up on both bottles until I get to 14 x 2 and 7 x 2. Then I will start the 4th bottle. You may have guessed by now that the 4th bottle targets Babesia. The "most" drops I can do is 25 x 2 for each bottle. However knowing my body, I won't be able to handle that much.

Once I herx and it's uncomfortable, I begin backing off on bottle 2 ... if after a few days of backing off, I'm still herxing -- I will back off on the bottle 3 ... and then with bottle 4, but theory is that the one I'm on the most of will cause me to herx. So theoretically I should be able to cut back on only one bottle and my herxing should stop.

I have a follow up in about 2 months. I have blood work and IV this week. So pray for my nurse to be able to get my blood and IV.

I won't share publicly specifics regarding exactly what this is until later (maybe never --), but will keep you up to date on how I'm doing.

2 comments:

Lyme Victim said...

Good luck with the new treatments Guinea.

Kara said...

Hope everything goes as smoothly as possible for you! You are in my prayers. I am usually a guinea pig as well, so I totally 'get it.' So far, it's worked out well for me, too! I am excited for you!!