Bells Palsy or Lyme

This photo was taken six months after I came down with Bells Palsy before I knew that I had Lyme, they said I would NEVER recover, but I truly now have about 90% of my face back. I did Alot of acupuncture twice a week, I was barely able to make it to the appointments due to exhaustion. I don't have many photos of myself during this time because I wasn't sure myself if I would recover. It took about 6 months for me to train myself to blink again, the blink was slow and delayed but now almost 3 years later my face it not as swollen and if I don't smile really big you wouldn't really know, but one eye is still smaller now and I am still working on it.

60 % of people with Bells Palsy actually have Lyme - I knew mine was different when I first got my Bells Palsy, the extreme fatigue, pain, etc. was not normal. When I first came home from the hospital. I felt as if I had bugs inside of me, it felt as if I was part of a germ warfare experiment......turns out I was pretty right on.

The doctors were not able to diagnose it, I had three false negative tests....most of the current testing available is worthless, unless you got to the right lab. I first requested my blood go to the right for the most accurate testing (right from the beginning) the unfortunate thing is the lab tech decided to send it in to a more convenient cheaper lab.

A year after I got the Bells Palsy I came down with Graves disease, I am really a healthy person ( I know that seems hard to believe but I am, that was another reason none of this made sense) and that is why when they told me that I had another problem it just didn't feel right, I knew that there was another bigger problem and these were symptom of something else. Before I knew what was wrong with me I was traveling again I thought my fatigue was just my body trying to recover.

In 2008 when I returned from New Orleans and North Carolina I mentioned to my class travel experience along with why my face still was disfigured etc. when one of my students mentioned that I might have Lyme. That finally felt right, I knew that had to be what it was, that is when I started my journey of diagnosing myself. I ordered a test kit from the lab and started using my doctor as a vehicle to get things done, my doctor was at such a loss she was willing to do whatever I wanted. Most doctors around where I live don't believe it is here they think it is only on the East Coast...anyway long story.

I felt like a crazy person, I was doing much better but still pursued the testing etc. It took another two months to get the results, a month for the test and another month to get it read, the doctors, neurologist, endocrinologist etc. couldn't read the test. so the only person I trusted then was the director of the lab. I got a copy of the results myself, my current doctor thought the test was negative but I saw one small positive and asked my doctor what that was, she didn't know.

I felt crazy because I finally felt good but was still pursed this testing thing. I recognized that there would have been no way I could have done it while in the midst of all of my fatigue.

It seems perhaps that people that have Bells Palsy without severe pain and fatigue just have Bells Palsybut there are certain signs to look for that help show the difference. Anyway everything is a blessing if you choose to look at things that way and now I can help others.

Since then they have published a few of my articles in the local papers to help make our community become more aware.

Detoxing from Antibiotics

I know my treatment is not over, but at least I have a break for a little while. I am on a program to detox my system right now, give my body a rest then check my lab work again then probably return to treatment. While detoxing I had horrible headaches but that seems to be backing off. All is good.

Feeling Normal

For the last three days I am starting to feel normal again - I am now remembering what that was like. It is strange not having to go to appointments every day. I know that I am taking a break from antibiotics maybe if I am lucky longer, but I feel good finally.

The picc-line is out for now

Had the picc-line pulled on Friday just about the same time that I should have been flying out of here for the Pasadena trade show. I finally realized that it really was a good thing that I stayed home, the skin site under the dressing was red and irritated on it's way to being what they call "Angry" not a good thing. Hopefully, maybe, perhaps I won't need another one but maybe I will but for now they are giving me a break from the antibiotics and perhaps I can have a little of my life back and not always in the car driving to doctor appointments. maybe I can have time again to paint or do my instructional DVDs I am having more energy and am looking forward to it.

Good thing I am not in Pasadena

It was a good thing that I canceled my trip to the Pasadena trade show
I got the CD57 tests back - they better ..I had them an hour apart and got two different results
one came back at 40 that was taken at 1:33pm and the other at 67 taken at 2:40pm (I was at 19) in both cases the numbers are better but the difference doesn't make any sense. This is suppose to be a cell marker and should be affected by the time of day or if I have eaten - we are looking more into it. In any case it is better and I do feel some relief.

The big problem right now is that I still have my picc-line and am not on antibiotics right now due to liver enzymes being elevated. On Monday I had a dressing change, we have only been using one kind of cleaning solution and this time they used two almost immediately my are started itching, I thought perhaps since it was a new dressing. but it was an allergic reaction- and most likely from the solution- it has been getting gradually worse as the week has gone on we decided to pull the picc-line to give my liver and arm a break.

So I made an appointment to have it pulled out and went to the hospital but the nurse never showed up, no one could find her, no answer to pages or calls and no one else could remove it - no ER doc's or nurses, the intensive care nurses were freaked and didn't want to touch it, almost the same thing happened last time and it just got worse from there on until the reaction became systemic (and this is happening when things are going well). I considered going to the next county but I didn't know if that would be any better - it didn't seem to make a difference...so I will have to go back to the hospital tomorrow.
I was just in tears - I am tough and handle it just fine until I see that no one knows what to do or where any one is - then I get overloaded and break down. It is suppose to be easy to remove but the big deal is to make sure that the whole line comes out intact. Good thing I am not in Pasadena.

The wind is out of my sails

It looks like I am having a major setback and might not make it to Pasadena after all.

I got some bad news from my doctor yesterday about my CD57 test it dropped back down to 19 after climbing to 57. What happened I thought I was feeling better in general, I have had headaches for the last week and joint pain so I did sort of feel as if I was in the beginning again so what happened?

I had more blood tests today ...same CD57 test in two different counties at different labs to see if the test was wrong or if we can find some inconsistencies.

I am seeing my doctor tomorrow and we will decide if I should cancel my whole trip, it just might be too much for me. I have been having a few issues but in general I thought I was doing really well. My attitude has been great - I believed I was on the winning side but the news just took me out and let the wind out of my sails.

Hold the Antibiotics

I have a feeling that I am on the winning side of this thing but then started to have a pain in my right side, back & under my ribs, I knew it was one of my organs. My doctor called me in to go over my current test results and ordered my to stop all antibiotic immedialy. My liver ensimes were elevated to a point that we needed to allow it to return to normal. It is not unusual for the liver to elevate while on so many antibiotics and he is watching me like a hawk. He explained that we need to see how quickly the liver recovers to see which one of the antibiotics is taxing my liver. Quick improvement means the IV Rochepin slow means the oral. If it is the IV Rochepin we will just change to a different infusion.

Had another CD57 today - should know soon if there is more improvement.
If anyone thinks being sick means that you sit around the house all day ...boy are they wrong, all this driving to doctor appointments is like having another full time job and exhausting....but I do believe I am finally close to the finish line, that is why when I don't feel good I can't really wrap my head around it because I feel as if it is gone but then have to realize I might still have a ways to go. It's been over 2 1/2 years since I had the noticeable onset of my problems and 1 year 1 month of treatment now.