It made me realize just how behind the curve the CDC was. I have been working very hard over the past 6 months and I believe in the next couple of months there will be some big news.

Or have no money for travel....

People who want to do something need to support efforts and organizations that already exist, not re-invent the wheel, in my opinion. They are always in need of help.

The other thing is that the problems in Lyme disease are part of a larger disfunctional health care system. If that were not the case, maybe we would be further along.

What blows me away is that ignorance and self-interest seems to get rewarded. Alan Steere, one of the leading reasons why we are not getting appropriate diagnosis and treatment, was recruited by Harvard, even tho it was known that many patients complained about him. Why would they do this? Only reason I can think is that he brings in the grants. Money is at the root of a lot of bad medicine.

Sorry, I know this is not the answer you wanted and I felt the way you do when I first started down this road.

In the absence of the big uprising, maybe you could just do what you can to help in the Lyme cause, whatever that is. Teddy Roosevelt once said something about just going ahead with something worthwhile even if it doesn't look like it will succeed, and the odds are against you. It should be done because it needs doing. So, do something, was his message.

In CA, CALDA was very active in getting the state legislature to pass a law that will require lab reporting of any positive Lyme tests, instead of expecting physicians to do the reporting.

On the east coast, a similar bill resulted in a 17 times increase in the numbers reported.

Since the department of health services in each state is responsible for the reporting to CDC, that is an important step that we need to take. And it has to be done state by state.

Check with LDA, or your local affiliate, to see what is being done. We have to have the numbers to make further demands. As long as it is claimed that Lyme disease is a rare illness, they will give it no attention.

We need to let it be known that Lyme disease is NOT rare, and that it disables and kills, costing the country big time. That is why AIDS got attention, because it was EXPENSIVE for the government.

And riversinger is right about getting things done in states. I tried to give this a push in my state. It was amazing how many excuses people had for not getting involved. I suspect this is an all too common scenario elsewhere.

I think getting angry about things sometimes is good, gets things done, but I don't think it's healthy to be that way very much. Gives you a burst and some ideas and then you can go with things from there.

--Annie

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``The best way out is always through.'' -Robert Frost

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Again the reply from the CDC to my Congressman was from Gerberding directly, and did include a copy of my letter that I had written the CDC last year along with her response to me.

Her response to my Congressman was exactly what I expected, there is no change in the status for Lyme Disease in California. I have also been in contact with Senator Feinstein's office and they have also committed to help, and a letter from the Senator was also sent to the CDC.

I will now be sending out my response to the Congressman this weekend. I had it already to go. While all of this communication is meaningless to helping us out in the short run, it was a necessary step that I had to take, before I could move forward. I do have a group of influential people waiting in the wings to move forward. We are almost there. My plan is to go after the CDC directly.

In my opinion the CDC is at the center of this problem. It is their leadership that is allowing this problem to grow at an alarming rate.

I am not saying the CDC is the whole problem, but it is an important part of what needs to get corrected. I do not feel that enough has been done to handle this piece, that is why I am doing what I am.

Things will change I know it will. It will take alot of effort on all our parts, but I do feel like I am seeing some light ahead.

Another question, is Pennsylvania any closer to passing the bill about protecting our lyme doctors?? I hope this is not dead and if it becomes reality someday I hope that will help a bit to get some attention, momentum, yes?

I get mad, too, OFTEN. I need to find out how I can be useful here in PA. Rick Santorum...

hwlatin,

The other villain in this piece, in addition to the CDC, is NIH. Most of their research money is spent on proving chronic lyme is not infectious and does not need treatment. We have had two managers of the Lyme program at NIH now who have this outlook, presumably tolerated or initiated by their bosses. Does it go higher than Fauci? Hard to say. But there really are only a few NIH employees who are doing a good job with Lyme, and they aren't calling the shots.

I agree that if the government changed its stance, then the universities would follow along. They go where the grant money is.