Saturday, March 26, 2011

Insight into our Local Medical Facilities

I just got some interesting insight into our local medical facilities about Lyme the other day. I was talking to a nurse practitioner and asked - why do the practitioners around here dismiss Lyme so easily when it is obvious that it's here. She said that's because it is not within their standard guidelines and they are told to not even go there. I said are you kidding me?

So people are left not having a clue what may be going on with them? She said people need to see a special doctor and we don't have the time for that. I said but you don't even offer that information. It can easily be treated if you catch it early enough and I know many local people that this has happened to and without early diagnosis treatment can run into the thousands of $$. - just unbelievable.

It doesn't matter where you live, if this is the general view and opinion of most clinics or doctors you need to be aware -because they are not going to be that helpful in most cases to a diagnosis or give you the treatment that you need, you really need to be vigilant.

I don't even want to imagine where I would be right now if I didn't get treatment. It was systematically going through my body affecting face with Bells Palsy, my thyroid, etc. not to mention the shear exhaustion and not being able to think, slurring words and not being able to complete a sentence and thinking that I had Meningitis.

A friend of mine just told me that a local doctor told her last year that some locals are "GRAND-STANDING" - totally dismissing the validity of Lyme in our community! (looks like that would be be)

I would be happy to say I will and am taking a stand and it will be GRAND !!! to help educate people about Lyme ... I can't tell you how many of my students after hearing my story have found out that they or a loved one has Lyme. I just wish instead of dismissing it they would consider the possibility. just nuts!!

Letter from Canada
I got told by my family doctor it was a very rare disease here in Canada. She hadn't seen a case before!!! I asked her if she had ever tested anyone for it... I expect you can guess the answer :( There are so very few doctors here who will treat it. Those that do get into all sorts of trouble. One doctor in the GTA has been told in no uncertain terms if he treats anyone else for lyme with anti'b's for more than 2 months he will be struck off as this is not standard practice. How do you fight the system to get the treatment you need?

My response
That has happened to many doctors especially on the East Coast. Treatment and doctors almost seems to be underground due to the standard guidelines. It has a lot to do with politics, insurance companies etc. a good movie to understand why it is that way is to watch the movie Under Our Skin

When I finally got the right test, I asked the lab director how do I find a doctor that knows what he's doing, his response was. Find one that treats well beyond standard treatment guidelines and uses integrative medicine....I could have cared less..I thought it would be a quick fix a couple of months at the most. Only to find out that I wasn't any better a couple of months into treatment and if I would have stopped - I would have still been dreadfully ill. It took 1 1/2 year of oral antibiotics and 6 months of a pic line - it took a total of 3 years to really get my energy back and I still worry about it sometimes. My body has now finally recognized that I have a problem and I do all I can to support my immune system as much as possible to be able to fight this thing.

Monday, March 21, 2011

Bells Palsy and what I did

Well they said I would never recover I haven't fully but it is much better than it was. my face was a mix between flaccid and a Hemi facial spasm so it looked a little swollen in my cheek, my eye was wide open as many peoples are then for awhile it seemed that it was going to be normal size then it started to get smaller than my good side.All of my nerves in my face seemed to be attached to my eye. meaning when I made any movement with my mouth my eye would try to close.

The nerves in my neck, face and head were all attached to my shoulder, so everything went into pain at the same time. It seemed that most practitioners did not know what to do to help so I have spent a lot of time and money trying to relax all of those facial muscles, nerves and adhesion's, (it would be similar to someone that has a knot in their back and having a message to try to release it).

This is what I did.
I first started with straight acupuncture about a week after the BP first hit. I could I see out of my affected eye nor did have the energy to go anywhere (due to the Lyme-which I didn't know at the time. I simply could not function).

After three months my neurologist said I would never improve, I told her that I had just started to get back the tinniest movement, and that I actually made a tear after watching a touching movie of animals - that was a HUGE deal - I made I tear ! I was SO EXCITED - the tinniest thing was such a big deal.

It was not until I asked for electrical stimulation on the needles that it seemed to make the a slight movement in my upper lip (and this was three months after the initial damage). That was when I realized that I could not believe everything the doctor said.

I told the doctor about the electrical stimulation that I was doing and how I thought that this was the only thing that made any difference. She then prescribed Physical therapy - with stronger electrical stimulation which may have been a little too strong. I feel as people with BP we need to be careful that we don't over do it because then it seems in can go in the opposite direction and then turn into a jokers smile so pace it, meaning hit it hard, then give it a break, then over again.

I might have done more of the electrical stimulation but I was also dealing with the Lyme / Babesia and could not afford the Lyme treatment and treatment on my face at the same time. It was not until I was officially in remission that could I then turn my attention back over to my face.

About 3 1/2 years later I then started to see an osteopath. (I tried one before without much success she really didn't do much and I noticed no difference). This time this doctor was not gentle and found out that I had NO IDEA how much pain I still had in my face until he touched certain areas of my jaw, inside my mouth, touched parts of my face by my brow and nose and by my ear. I was in agony, wanted to cry, I wanted him to stop but just let him do what he needed to. (It was funny how I looked forward to my appointments with him where I knew that i was going to be in pain) but I think what kept me going was intuition and the realization and shock that my face still was in pain.

Electrical Stimulation
I would see him once a month then after a month or two the pain subsided, it started to feel sort of like the other side and people started to notice that I had more symmetry. I was please that people that hadn't seen me in a few months could actually notice a difference and that my face didn't feel as pulled anymore. So I feel what the doctor was able to do was to take the areas that were frozen and now have those channels open up for stimulation.

I then started Macro Electrical Stimulation ...apparently a very old technique with electrical currents that are compatible with your body it's not noticeable, only if it touches dry skin, then it is a slight zap. What they do is place a wet towel over the area that they want to treat then apply the current. The current is focused in these areas but runs through your body...the current it is very very slight and as I said not noticeable.

I'm coming up to 4 years on May 4, I'm happy to be where I'm at, have quite a bit of energy (which is huge) I am now able to exercise, trying Zumba (1-3 times a week, and am actually sweating (something I don't usually do) and when I do I think of all of those little creatures (Lyme) and how I am making an an environment that is hostel to them. Exercise, sweating, breathing and attitude.

Wednesday, March 9, 2011

Bells Palsy Update - it will be 7 years in May

Like many of us with residual BP when possible I prefer to wear my sunglasses when possible

I am really happy to have to have as much of my face back as I do,they said I would never recover.I still try not to smile too big when taking photos, because when I do my face is still a little cock-eyed.

The doctors wanted to put a gold weight into my eye-lid, but I thought - they just don't know me very well and I did not accept their opinion. I did go through a lot of acupuncture with electrical stimulation, PT with electrical stimulation and macro electrical stimulation. I have also been seeing an osteopath (something I never believed in before) but to my shock when he started to work on my face - I had NO idea of how much pain I was still in, until he touched certain areas of my jaw and neck. It would be similar to someone having a tight muscle in your back and having someone massaging it to work it out. Now it feels similar to the other side but it still pulls in areas of my neck and eye.

I haven't had any therapy for about 2 months and nothing seems to be improving any longer. I might try a little more but I know that I have pushed my recovery to the limit. They say your going to get as much back by about 2 1/2 years but I am here to tell you my recovery has been ongoing until now slow but steady, so don't believe everything they say but you must take control and get some sort of electrical stimulation.