Under Our Skin - What a movie!

[drsdonthelp]

I just watched the movie, under our skin, and I am sitting here not knowing how to feel..........

I am worried about my children, and worried that if this is lyme, am I going to get sicker than I ever was?
In the movie, some people said something about having ms and lyme?

Just listening to the stories of what people and some children have gone through, made me choke up and cry.

I am actually more fearful of lyme than I am of ms, I think mostly because I don't like to be sick and the thought of getting worse before getting better, scares the crapoly out of me!

Today I had to bring my kids in to have their school physical exam done. My 8 yr. old son told the doc. that he has been having very bad headaches. On a scale of 1-10 he said an 8. Soooooo,... he will be getting a MRI to check and see if these are migraine related. Of course in the back of my head I am thinking OMG, why would an 8 yr. old be getting migraines???

After watching that movie, it makes me feel so angry at the health care and how people are treated.
I am not an anxious person for no reason, I get anxiety when stuff like what I just saw happens and people like us are brushed off.

I am so glad this movie is out to get people to understand alittle better what lyme can actually do to someone.

Pam

[drsdonthelp]

Hi, and thanks! I will check it out.
Pma

[ree427]

I was just on Dr. Brian Fallon's website and he has information of Bartonella which I found beneficial. Just thought I would pass this on.

[drsdonthelp]

Hi everyone, I appreciate everyone's response on this. I made my sister watch this movie with me today. So, yes, I ended up watching it again, but this time, I was able to see it with a different set of eyes. My sister was totally into it, and recalled alot of things I have been through and how much it all fits.

We discussed all of the ms , ALS, Parkinson, Alshiemers and things that doc's SEEM to be baffled on how people GET IT... lyme disease makes sense.

I didn't realize that if lyme left untreated for so long, can take on a different role as in MS. (please correct me if I am wrong)

I talked about this all day long, I can't stop. I am so fascinated by the scientific aspect of all of this and I am so not ,,, and by no means "scientifically gifted" LOL

I need to go learn some more on Bartonella...
Hope to chat with all of you soon,
Pam :)

[ewford]

   Dr Jemsek told me that I would not need IV since I could actually drive from my home, park my car in a Metro station, navigate the Metro lines and ACTUALLY find his office.  He said some are so bad they can't remember the last sentence they spoke or what color their cars is.  So I feel lucky that I was able to "diag" my concern and blow off the naysayers.  Jackie is right, I was wrong that the movie IS scary to those that are just scratching the surface of Lyme disease.  It IS effective though as far as gravity is concerned.

[JackieCalifornia]

There is a website called "underourskin [dot] com / characters"  (take all the spaces out of that and change [dot] to a .)

That gives some updates on how some of the people in the movie are doing now.  The first one is Mandy, and you'll see why I didn't recognize her at the screening of the movie.

So, Ree, try to focus on the aftermath instead of the awfulness of the movie.  I was really mad after I walked out of the theater, and if I hadn't been well along toward being well at that point, it would have seriously taken me down.  So every time you watch the movie, then go to the website and look at Mandy now.

[ree427]

I must have watched this movie 50 times or so. It is very frightening and I don't know why I keep watching it. I have mixed feelings about it. I recall Mandy, the one patient in the video who really took a turn for the worst on antibiotics. It's possible her doctor was too aggressive with her treatment. My doctor told me if she would give IV antibiotics before attempting oral antibiotics, a lot of people would herx so bad they would end up in the hospital like Mandy in the movie.
What I am trying to say is if you find a doctor who is willing to go slow and steady, your odds of getting sicker are diminished, so don't let the movie deter you from treatment or frighten you. Some people don't get worse with treatment and simply get better.

[JackieCalifornia]

Oops, should read before I post.  The second sentence in my last post should say:  

"There may have been AIDS in some isolated areas of the world that then began spreading a couple of decades ago, but it is now worldwide, **AND SO IS LYME** as everyone knows (well, except maybe for large chunks of the medical profession)."

[JackieCalifornia]

Although the whole story is still coming into focus, it appears from what I have read that Lyme has become a problem only in recent years, partly because people now move into leafy areas (instead of clearing the land first), and partly because Mother Nature has a way of changing, spreading, developing and creating what to us appears to be mischief.  There may have been AIDS in some isolated areas of the world that then began spreading a couple of decades ago, but it is now worldwide, as everyone knows (well, except maybe for large chunks of the medical profession).

You may not have had Lyme for your whole life, but who knows.  Maybe Bartonella is a newly spreading infection too.  Dunno.

The thing I try to focus on is the here and now, and being well.  You may want to have your kids tested, just to be on the safe side.  I did, on the theory that my teen had been everywhere I had been, and it turned out that we both had Lyme and babesiosis.  Whaddaya know.  (My kid resisted treatment, but took it, and said afterward that there was a real difference, not so tired all the time anymore.  Neither of us ever had a rash or saw a tick.)  

But one thing at a time.  Once you've got your doc lined up for yourself, then think about getting the doc to test the kids if you're concerned.

You're doing just fine.  What's the saying -- 'when going through h*ll, keep on going.'  There IS life after Lyme.

[drsdonthelp]

Hi Jackie, Thank you for telling me that. wow, I can honestly say that I was getting a little nervous, and actually thinking I'd rather have ms if this is what I'd be going through having lyme.

I live in Upstate NY. I have always been surrounded by woods, I used to go to the Adirondacks with my friend to her camp, EVERY WEEKEND! I used to go berry picking with my friend and make forts wayyyy deep into the woods so our mom's didn't know we were smoking, we would go out there.  

I have had cats all my life. I am extremely allergic but still love them. I have had dogs all my life, and at one point had a guinnea pig when i was like 10.  I was a girl scout many moons ago and did all the camping and hiking stuff. Finding out I had cat scratch fever at 17 seemed like no big deal, I just made fun of myself and sang " I got cat scratch fever" la la la.... LOL


Seeing this movie did make me realize even more about the co infections. Bartonella!

I am getting anxious waiting for my endo. appt in two weeks, I am going to insist on a referral to an LLMD. I am sure I am close to alot of them.

Pam

[JackieCalifornia]

The movie was made and edited to be scary, in order to get the attention of those who think Lyme is like the sniffles.

Unfortunately, the scariness of the movie is exactly what we, Lyme patients, do not need to have shoved in our faces.

Not only do we live with Lyme, but we are often anxious as a side effect of the disease and a reaction to the poor understanding offered by the medical profession.

I have mentioned here before that I saw the movie around the time it premeried, in a small theater near where we live.  Afterward, the director and several other people went up on stage to take questions ... it wasn't very organized, so only well into the Q&A did I realize that the healthy, plump, totally normal looking and sounding people up on stage with the director were the actual people (Mandy etc.) FROM THE MOVIE!!!  THE PATIENTS!!!

That is why I do not like the movie:  it was made to frighten, and that's the last thing we Lyme patients need.  I think it could have been made with a wrap-up at the end that showed the people after treated.

It reminded me of a comic strip in the newspapers when I was a little kid.  It was about a grandmotherly woman named Mrs Worth, who went around getting involved in other people's lives and supposedly helping them with their problems.  One story line had Mrs Worth visiting a neighborhood child who was sickly and in bed for a long time.  The story was that the kid had leukemia, at a time before there were few effective treatments for leukemia.  I was barely old enough to read the comics, but I managed to piece the words together, and remember the shock I got one day when there was no comic strip where Mrs Worth should be -- just a printed notice that due to the concern the story line was causing for the public, the strip would not be printed for several weeks until there was a new story line.  I was upset not only about the story, but that some idiot thought it was okay to scare people with a story.

That is exactly how I felt a lot of years later when I saw 'Under Our Skin':  how dare this director edit this film to scare the wits out of those with Lyme!

Please know that the movie was done for effect, and that it is not a forecast of what will happen to you or those you know.  I know you know this at a 'knowledge' level, but learning to believe it at an emotional level is a struggle, given the politics surrounding Lyme and the poor treatment we often receive from nonLLMDs.

Take heart, keep the faith.