Amazed at lack of accurate information.

I was so excited to come across this site, hoping to find additional information for my 16 year son who has Lyme and co-infections. Yet, as I read the articles, I continually find inaccurate information and just overall lack of information. Why is it when I read articles about Lyme Disease, no one mentions the co-infections? Lyme disease is not the problem and is easy enough to test for. The problems lay in the co-infections, yet every article..whether written or reported, hardly ever mention these co-infections. Even this site doesn't doesn't list Bartonella..nor does it talk about testing for these co-infections. If you don't test accurately and treat all the co-infections, you will never get rid of lyme disease. There are 9 different co-infections to test and treat for. Very discouraging. They report on Avril and don't specify all the details...why would she even bother to come out and tell a partial story. She would be a wonderful mouth piece for Lyme, yet there is silence. We need to get loud and get the insurance companies to test properly and pay for it. I'm so disappointed and angry when I hear and read stuff like this.....

Hi Vberkylynn!
Welcome! I'm so glad you joined our community!!!

I'm so sorry to hear that your son is dealing with these infections!! I grew up with them, so I can most certainly sympathize with him on what it's like to have these infections at that age!

I'd like to say though, that although I heartily agree with you on the fact that Lyme is far from the only thing we deal with, but it's not easy to test for - I had to be on very strong pharma abx for 12 months before I tested positive for Lyme and I've been here on this forum for almost 9 years now (wow, that made me feel old!! LOL!) and many, many people that have these infections can't get a positive Lyme test.

The reason more of these tick borne infections aren't reported, is simply because the CDC hasn't decided that they need to be reported. It's not mandatory to report all cases of Lyme either, depending on what state a person is in.

And I'm a little lost when you say that this site doesn't list Bart. We not only have it listed in our "New to Lyme? Start here!" thread that sits at the top of the forum, there are symptoms listed for it as well as the other top co-infections.

And it's the reporter and editor of whatever paper or article or tv station that determines what part of a story to tell - not us and not the person they are interviewing usually.

Insurance co's won't pay for this testing through the good labs until laws are passed to force them to. Many insurance co's won't even cover the abx that are required to treat these infections for longer than 6 months, and some won't cover abx for more than one month.

Again - it has nothing to do with those that are sick with these infections. You've seen you son - how much advocating do you think he could do while very ill? That's mostly the type of people you are talking to here. I'm one of the few exceptions because I've healed, yet have stuck around.

Here's what I'm doing to bring more awareness and maybe you can too:
Contacting state and local officials to get them to recognize that Lyme and other tick-borne infections really are a threat to the people of that state. Get them to sign on to any tick-borne infection bills that come in front of them. This is a good site to start out on to find out what you can do: www.lymediseaseassociation.org/index.php/govt

You can support your local Lyme support group. They likely would love to have you volunteer to help out in any way you can.

You can join any one of a number of Lyme organizations that have popped up to try to get good legislation passed.

Lyme is the infection that is in the spot light right now, if we try to ignore Lyme, our chance to do more will also go away. So we have to start somewhere, and so we start with Lyme and get more done as we go along.

I hope you are in this fight with us!!!