I Saw The Lyme Documentary...

I wish I could relay information to you regarding Under Our Skin. I couldn't possibly put into words all that is captured in that movie.

I drove 2 hours last night (we'd already driven 3.5 hours to my MIL's house earlier in the week) to get to the movie screening. I knew as I walked in that there were others in like situations as they walked the Lyme journey. I heard people discussing their onset, history, treatments... I kept quiet.

There was literature featuring symptoms, treatments etc... I didn't read.

I'm fairly certain I know all I need to know about Lyme Disease... any further information would serve to add fear and or uncertainty to my journey at this point. But I did go to see a movie that was said to educate, make aware and document case studies of individuals battling Lyme... and that will be encouraging to see- or so I thought.

It was a VERY difficult movie to watch. Extremely difficult. First- seeing others suffer in ways (and far greater) as I've suffered is overwhelming. To see multiple people explain how the mainline medical field dismissed their symptoms... maddening. And worst by far... to hear a physician previously diagnosed with ALS say that as long as he is on IV antibiotics and oral meds he keeps his health in check but once off the "ALS" (Lyme) progresses with ALS like symptoms... and that it will indeed kill him if he is not agressive. Well, that my friends is difficult to view.

Because my symptoms presented like ALS. My symptoms are neurological. And my symptoms are much worse off IV antibiotics. But it is not at all in our means to remain on IV antibiotics. And the guidelines that the mainline medicine follows regarding Lyme, the guidelines the insurance companies follow regarding paying for treatment... says that one round of IV Abx is all one with Lyme would ever need.

And if that wasn't hard enough to watch... I viewed death certificates that noted Lyme Disease as the sole cause of death. And one certificate specifically said, "ALS/Lyme Disease".

The movie was informative! And for those that aren't subjected to a relative walking the path of someone with Chronic Lyme- it will show the extreme nature of this disease in different perspectives so that a well rounded picture is formed. but for those of us on this treatment journey- it is a hard thing to watch.

I bought the movie. I want my husband to see it. There are perspectives in the movie I know he will benefit from seeing. Some confirming what I've said about my symptoms all along... some confirming the serious nature of my symptoms... and some confirming the difficulties of walking along side someone with a chronic illness.

If a screening comes available in your area... I really urge you to see it. Lyme is not ONLY in Connecticut. There are people in this movie from Orlando, Nevada, California, Seattle, and Michigan. I know some of you are from those places and think you are outside endemic areas. IF you see deer in your state... there are deer ticks. And deer ticks transmit Lyme Disease.

As for an update regarding my health... I am currently taking both oral and IM (Intramuscular) antibiotics. It is a difficult treatment course but I know full well there are times when it gets worse before it gets better. I am definitely worse at the moment. Please be praying for my neurological system. It is quite active. I have shaking, tremors, myoclonic jerks, muscle twitches. My throat, though swallowing fairly well, has muscle twitches quite often as does my tongue. And my muscles are noticeably weaker. (Though I am plenty capable of walking, driving, typing, folding laundry etc. )

And on an extremely positive note- tomorrow I'll be getting together with Tara and baby Charlie on our old stomping grounds... Messiah College. Actually, I suppose I'll be getting together with K2 as well. (She is pregnant with her second child) That will make for a wonderful end to a wonderful week here in central PA.