Knowledge is Power, so we are spreading the word

We have decided to be a little more open about our lives and what is going on. As many of you know the last several years Brian has not had great health. He has  been diagnosed with fibromyaligia, narcolepsy, meningitis, and chronic fatigue along with countless other things. He tried everything from physical therapy, pain meds, epidurals and even tried an extraordinary amount of fish oils pills. Nothing helped. A friend of ours has Lyme and he is very open about what he is going through, and his family and he have educated us immensely on the topic. Brian had been tested for this twice before but both tests were negative.

You may ask, why test for Lyme, well at age 12 Brian developed a weird rash, this is a key trait of Lyme which is why they tested him for it then. Well at 18 symptoms stared and several of these led one of the many doctors he saw to test for Lyme once more. Again is was negative. Well through this friend we learned that lots of people with Lyme test negative. WHAT?! How is this possible? Well you see Lyme is a tricky thing. It is really good about getting places in your body that are hard to test. The cheap test that insurance will cover is not very accurate. We learned that a western blot is the test we needed and we needed to send the blood to Igenex, a lab that specializes in this test. So we ordered the kit directly from the lab, got the doctors signature to get the test and got his blood drawn. It took 2 weeks and then we had results. They were positive!

Getting the results was a great moment for us, what he was going through was no longer a mystery of strange unexplainable symptoms. We now had a source for everything reeking havoc. Here is the thing though, this test can tell us whether he has Lyme or no,but what it can not tell us is if there are co infections as well. See this test too is not 100% at detecting exactly what we may be up against either. More that 50% of people that have the co infection tests run for things like babesia and bartonella get negative results even though they truly have them. And the way you fight Lyme is not the same way you fight these other things.

Learning more about this disease has brought a lot of frustration. First, how could 2 tests get run previously, and neither going to the lab with the highest reputation for running this test accurately. Second, why would doctors knowing how inaccurate the test they ran were, solely base their conclusion that he did not have it off a test and not off the symptoms that were before them. They were happy to give him diagnosis' for many other things and offer treatment for those without much reason to do so. He went misdiagnosed for over 11 years.

The thing with Lyme is, that if you catch it early you can often get rid of it quick with antibiotics. But the other thing about it is that because of these inaccurate test most patients don't get that treatment soon enough, which results in severe ongoing symptoms and even sometimes lifelong problems.

For those of you with Netflix you should watch Under Our Skin: The untold story of Lyme Disease, there are also clips on you tube that you can access here. It will probably scare you to watch this, but it should. This is what people are dealing with everyday, we are dealing with it, and it is a bigger problem than any of us realize. Like I said many have no idea this is what they are dealing with.So many are misdiagnoses because of how the medical world currently deals with this disease. Awareness is high amongst our group of friends here and the more that are tested the more are getting positive results, along with answers to their symptoms. As there is more awareness we are sure that doctors and insurance companies will be forced to accept the problem before them. Patients will no longer be ignorant of the problem they face and will demand changes to the system. Reported cases have increased from 2004 to 2009 by 94%, and a lot of this is because of the video above and bring awareness. And how many of you still had no idea about Lyme before reading this?! Imagine how many more have this but just don't know it yet.

There is a petition currently to get the CDC to change their standard for treating Lyme. Please take a minute to sign it.

We aren't writing about this to whine or complain about our situation, we are doing it to bring awareness so that others infected don't have to go as long as Brian has had to go without knowing the cause. Knowledge is power and we want to share what we know, the earlier this disease is detected the higher your changes of a recovery are.