Tuesday, June 22, 2010

Feeling low

I guess I am feeling a little low right now, just had the full panel and co-infection tests which will take about three weeks for the results. In general I have been doing really well but had a nasty headache last night which seems to be cycling every 3-4 weeks this could be a coincidence or possibly hatches. I would normally not worry about it but the headaches and while on my last trip dizziness (which might have been from being tired or needed more water) and my speech a little slurry I want to be on top of it instead of waiting for it to get really bad. I hope I am over reacting but the physiological bump was having the low CD57 at 14, the lowest it has ever been, maybe it will never go higher or their is another unseen problem or co-infection. The current tests can not diagnose all co-infections.

Friday, June 18, 2010

Low CD57

We just wen over my test results and my CD57 is at 14. For the lat two years it has been at 19 with an occasional 30 and one time 57 (boy that was exciting). The normal range should be between 60-360 and anything lower is considered severe and chronic. I am usually devastated when I receive this information of a low CD57 but perhaps I am not terrible surprised any longer, just really disappointed. I feel really good, have a lot more energy than many other people with much higher and normal CD57's so what's up with that.

Our next step is to run some of the original testing through IGENEX a full panel #6040 test along with a co-infection panel and also run the new (LTT-MELISA® test for Lyme disease) from Germany so see if I still have an active infection. Will know more in about a month when I get the results.
CD57 information


What is Normal Now?

I have been off of the antibiotics now for the Lyme treatment for 8 months. I have been feeling really pretty good but do get a little paranoid when unusual things start to happen like being a little dizzy, tired, bruising etc. I am not sure now what is normal and what might be the early signs of another outbreak. before I left for my trip (teaching working on painting) I had more testing, (I believe it's a good idea to stay in contact with your doctor and try to stay ahead of any potential problems). When I returned we went over the tests. As it turns out my thyroid is mostly normal but it looks like it has some elevated levels as if I am having some immune issue thinking about starting up again or if if I was wheat intolerant that would not be unusual but all of those tests look fine and I don't feel any different when after I have eaten wheat. I think in general it is much better to stay away from wheat but it is SO difficult when traveling and teaching it is almost just too much to think about then because at that time it is a marathon of traveling and teaching (I thought this trip would be a good test for me to see how I held up and boy was I an exhausted mess when I returned).

New Test For the Diagnosis of Active Lyme

There is a new test that was announced last week that is being released here in the US called the (LTT-MELISA) for Lyme borreliosis. This test was created in Germany with testing here through IGENEX. There is promise that this test can give better accuracy than the current CD57 in diagnosing an active infection of Lyme. This would also be wonderful for people that have already had long term treatment and still have low CD57's. Some people may always have a low CD57 but this test shows promise in better understanding the activity of this disease. MELISA® Medica Foundation (LTT-MELISA)

Thursday, June 10, 2010

My face

I was just interviewed by a TV station WBKB 11, CBS Affliate, about my workshop in Alpena about my workshop, turned out great, my face didn't look too bad. People that don't know me may not realize how different it is. I am already such an animated person and when teaching or meeting people I try not to let any of this stop me from having fun or being myself. But I guess I still have a little sadness when I see a photo or video clip and I am excited how uneven it is. I know I am incredibly lucky to have as much recovery as I do but has not come easy and not by itself. Everyone told me I would not recover since the Palsy was SO bad and did not change within a certain time frame, they said I could still have some recovery but I told them 3 months later that I was just beginning.

It has taken months of acupuncture with electrical stimulation with breaks in between so not to over do it and make it go in the other direction (so not fun - the joker smile) letting it relax again then starting the electrical stimulation again. I did Physical therapy too with stronger electrical stimulation which was good, but again having to be careful that it didn't constrict it too much and ball up all the nerves in my face.

I have been feeling that I needed to have the muscles in my face stretched a little since I feel many of the nerves that have connected again but don't know how to relax and stay tight. At this point I am feeling that the osteopath may be the best bet to do what my body is intuitively telling me. I have been to three during this adventure and think that perhaps this last one may be just the right person that I need to see, since I had no idea that how much the placement of pressure could be so painful. Similar to a knot in your back and having a deep massage to release it.

Started traveling again

June 2010: I have started to travel again teaching workshops and have been very happy about it. With the East coast/ West Coast time change that can be tough. When I'm tired my eye on my Palsy affected side looks so different than the other.

I have also started to feel a little pain with significant twitching in my thumb on my left (Palsy side) which makes me nervous... I have also started to feel dizzy...I am not sure if I am just really sensitive to the bounce in old buildings etc. or is this normal or the next adventure?.