Osteopath and Bells Palsy

Went to see an osteopath doctor today for other reasons but we talked about my Bells Palsy. As he was working on me he started to work on my face. My face is still sort of swollen from the trauma of the BP and has been like that for years. It's better and nowhere near as bad as it was but it is still there.

When he started to work on my jaw and the inside of my cheek I could not believe the intensity of pain I still had. Tears were welling up in my eyes and I had to take a break and a breath occasionally but the fascinating thing is that I knew he was doing exactly what needed to be done.

I have been feeling new twinges and perhaps new nerves are waking back up, but they have been bunched up for such a long time that it makes sense that they need to be carefully released and gently stretched so the channels can be opened and the nerves relax again.

Where do the ones you love go?

It is a very sad thing when the ones you love the most have know idea of what you are going through and make you feel horrible for ever being sick. Even when you try to function with a freakn picc-line, and try to do as much as you can for them it's still is not enough for them. Do they come by or call when your in your depths of your survival to offer support, No.

Then when try to get your life back and return to work to make money to pay for all of your medication and treatments and rebuild the thousands and thousands of dollars you have spent (depending on how long you have had the disease). Your still not giving enough to them.

One thing about this disease it really teaches you about boundaries and how stress can be detrimental to your survival. You learn to eliminate or reduce any unnecessary drama. It's so sad how selfish and unsympathetic friends or family can be, when you are not able to be on their demand and to give to them. Then when you feel better and think you can start to show them how much you love them it is still not enough.

When you have Lyme there is no vacation from this creature that's living inside your body. IT IS WAR and a constant battle....and perhaps the biggest lesson in this battle is that YOU need to be number one and your priority...on that note, thank you Lyme for that lesson.

Bells Palsy is a Symptom of LYME

I have just been reminded how many of my new friends have had, have or know someone with Bells Palsy and not too surprisingly these friends are being diagnosed with Lyme and most times, months or years later.

If you have or know someone with BP and they are extremely fatigued, had BP more than once among many other symptoms I will just about guarantee you that they have LYME. The longer it goes undiagnosed the longer the treatment

It's tick time ... and Yes those little poppy seed ticks can devastate your life. If you suspect you may have it don't take a negative test as your final result most tests have a false negative rating, and you truly need to see a LYME literate doctor ...personally I would not see an infectious disease doctor they use different guidelines, shorter treatments and I have seen too many chronic cases as a result.

Yes this get's me fired up ....too many suffering people and too many uneducated doctors, telling many of you that your crazy, this does't happen, you don't live in a Lyme area, blah blah blah that is why we need each other.

Three years tomorrow, May 4

Well tomorrow May 4 it will be my three years of when the Bells Palsy first hit and I was medi vaced out by the EMT's (not too fun). Three years later I fianaly have more eneregy and feel that I have a healthy glow again.It has taken three years to be able to see all of my teeth again when I smile, I'm still working on trying not to close my eye when I smile or talk. It sure takes a lot conscious thought to isolate those nerves and stimulate facial memory. I know I may be at the end of more possible recovery but I believe the nerves may still have a little more left.

I found that if I stayed on the electrical stimulation via PT or acupuncture it can have an adverse affect and actually go in another direction similar to a jokers smiles. So I tried to take breaks in between then aggressively exercise those areas again and it has seemed to work pretty darn good. I still am not too fond of pictures of myself, it's hard to get use to my one eye being smaller than the other, but I am still very lucky to have finally discover what was wrong with me and that the BP was only a symptom to a much bigger problem. In fact today I was thinking how lucky I am and how I love my life.

Wavy hair on one side of my head

The crazy thing about being so sick over the last three years is my really straight hair is now starting to get wavy "and" it is all on one side of my head (lovely). My hair has always been so straight that it never held a curl, but now it's wavy but it is only on one side of my head the side that was affected by the Bells palsy. I don't know if it is from the illness or antibiotics but it a huge change, (oh I am sure that would look nice if I had a hair cut.)

Before I got the BP I noticed I was loosing hair and had no idea why, I felt like a shedding dog, the hair lose was incredible. A year after the BP I came down with graves disease and it made sense that the hair lose was from that, but the Graves disease, Bells palsy, hair lose, memory problems, stiff neck and knees were all symptoms of Lyme Disease.

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.