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19 year old having problems with her parents understand Lyme?

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Posted 7/7/2014 7:47 PM (GMT 0)
I'm so frustrated I am crying right now. I had a really good day this past Saturday and ran around and swam. Severe joint pain Saturday night that kept me awake a long time. Then most of Sunday was good until I felt awful in the afternoon. Feeling generally not so great today. Frustrating how it goes back and forth.
But my Dad and my Stepmom keep on telling me I need to exercise and work longer and "push through it" or I'll never get better. And they keep on telling me to sleep and rest less. I keep on trying to tell them that I feel tired and sick because I AM TIRED AND SICK. The problem was the stupid doctors told them earlier this year I have Fibro. caused by depression and the only way I'd get better was if I kept active.
The problem is I have Babesia, Lyme and Bartonella. I feel awful. But my parents are making me feel lazy/stupid/slow/pathetic. I'm 19 by the way and supposed to return to school in the fall which is part of the reason why they are freaking out. But I can't help what my body does!!! How do I tell them to F-off politely?????????? They never listen to me!
* By the way, has anyone felt awful after stopping Atovaquone/mepron?
Posted 7/7/2014 8:53 PM (GMT 0)
That's too bad that your parents don't see what's really going on with you. We did that for a little while when our daughter was first ill. We blamed it on puberty until more symptoms came on that couldn't be explained and she just kept slowly going downhill.

How long have you been sick and how did you fine out you have the 3 infections? You need a Lyme Literate doctor to do the proper testing and diagnoses. You can start a new thread to ask for names, something like "Looking for LLMD in (your city and state)." It's not uncommon for doctors to diagnose other things when they aren't familiar with Lyme. It wastes a lot of time when someone does have a Lyme infection. I'm so sorry for what you're going through with your parents and I hope they will eventually understand and be on your side. Keep coming here for support and to learn more. Let us know how things go.
Posted 7/7/2014 9:51 PM (GMT 0)
I would def spend the summer resting so you CAN attend school in the fall. I think you are sicker than your parents realize and if you push it too much you could have some set backs. I still take it pretty easy after 11 months.

Here is a video for them to watch:

topdocumentaryfilms.com/under-our-skin/
Posted 7/8/2014 12:49 AM (GMT 0)
Great idea to watch the movie listed above. It gives such a clear
idea of what LD is and what living with it is like. Hope your parents can watch it.
Posted 7/8/2014 2:56 AM (GMT 0)
Here is another good documentary on lyme disease:

http://vimeo.com/95647143

If prompted, the password is LD.

There are a two really good books on lyme disease they could read. The first is "Cure Unknown" by Pamela Weintraub and also "Why Can't I Get Better?" by Dr. Richard Horowitz. I might read
Dr. Horowitz's first.

Why not ask them to look around the ILADS website? Here is the link: http://www.ilads.org/

Hope this helps!
Posted 7/8/2014 3:37 AM (GMT 0)
Very sorry to hear that.

I can't imagine going through something like that at the age of 19.

I hope we can help "parent" you through a difficult time.

Personally, I thought "Under Our Skin" seemed a little bit like propaganda.

There have got to be better movies about Lyme out there, although "Under Our Skin" is a start.

Start looking for research studies and academic papers.

Show them one of the handouts that patients give their doctors.

Ask them to look at one of the websites. The best one is the one that used to be CALDA. Now, I think it's either, Lyme.org, or LymeDisease.org. I don't remember. The organization also puts out a really good magazine to which you can subscribe.

If they still don't believe you, tell them you have to look for support elsewhere, or let them go, until they can be more understanding. They should investigate before jumping to conclusions.

Parents are important, but they aren't going to be helpful if they keep dismissing you.

Margaret
Posted 7/8/2014 3:38 AM (GMT 0)
PS, Feel free to email me if you wish.

Also, yes, when I stop Atovaquone, I get hot sweats, starting at dusk. I don't know about mepron.

Margaret
Posted 7/8/2014 3:48 AM (GMT 0)
Also, I would order Pamela Weintraub's book, "Cure Unknown," and maybe the Horowitz book, although the latter ties Lyme in with a bunch of other diseases and sensitivities.

The Weintraub book is an excellent introduction to Lyme.

Margaret
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