This is one of many “Lyme Catch-22′s” I’ve noticed with this disease, but this is what I’ve been picking up on this week and I wanted to talk about it.
The Paint May Lyme Green campaign, as well as all the other efforts for Lyme disease awareness in May have definitely been successful. Besides the PSA’s being shown across the country, and the increase in dialogue about Lyme disease, there have been the actual personal stories we’ve been hearing from people who were tested and found out they had Lyme disease because they were made aware through the awareness campaigns.
When this began I was ecstatic. Not to know people had Lyme, because that’s not something to be happy about, but because it became clear that all the hard work we put into raising awareness was paying off as people were letting us know that thanks to us they had found out they had Lyme disease, and could now be treated.
On a personal level, one of my closest friends was diagnosed about 2 months ago with Lyme. It took her 9 months and several Dr’s before she could finally get the testing she needed to confirm she did indeed have Lyme. She became concerned as she learned alongside me with my illness and realized how many of the symptoms I mentioned that she also had. This came after 20 years of Fibromyalgia, and then a diagnosis of Lupus. Those of us in the Lyme community will tell you those are two of the diseases that should be red flags for the possibility of Lyme disease. During May this friend’s adult daughter was also diagnosed. I was so happy for my friend to have an answer to years of pain and confusing medical problems, but then I almost felt guilty when her daughter tested positive. Without the awareness we were spreading, she may not have known to even get tested for Lyme. But to see it hit two people in one family was heartbreaking for me. But as I spoke with them both I continued to keep as positive as possible, letting them both know somehow we would all get through this. Everything works out…not always how we want, but it always works out.
While that was going on I thought of my Aunt and Uncle, both of whom had “inconclusive” Lyme test results in the past, even while seeing ticks and having to pull one out. They live in the mountains, surrounded by wildlife. They were both told they were negative, but because of misinformation. Many doctors don’t realize that being CDC negative does not necesarrily mean being negative for Lyme. That’s a lesson most of us have had to learn the hard way. (It clearly states on the lab results that the CDC qualifications for being positive are for statistical purposes only, not for diagnosis.) When they reviewed their actual test results it was clear there were positive bands. A positive band is indicative that there is either a Lyme infection or at the very least there has been exposure to Lyme. (I am not a doctor, this is not my area of expertise, this is me summing up what I’ve learned in the past year…but please know that only a Lyme Literate Doctor can diagnose and properly analyze Lyme results.)
The point being that in the back of my head the fact loomed that it was very possible my Aunt and/or Uncle could also have Lyme and may therefore also need treatment. We would joke that if more than one of us needed treatment we’d all end up living together to be able to pay for it. But as I watched my friend and her daughter enter this arena, the thought was always in the back of my head.
In addition I have made many friends in the Lyme community who are in this same boat. Some who come from entire families infected with Lyme and/or co-infections. I saw what it would do to those families. While I saw this, and was aware of it happening, I wasn’t experiencing it first hand like I was with my friend and her daughter.
The last week has been an influx of feedback from people involved in the Paint May Lyme Green awareness campaign telling us stories of people who heard the message and went on to be diagnosed with Lyme because of it. As the numbers increased I went from being ecstatic at knowing our message had gotten out there, to feeling a little sick over the fact that so many people were having to face the reality of Lyme disease. And if there’s one thing I hope I’ve conveyed in my writing about my disease it is that it is not a pretty reality. It downright sucks to be honest.
I kept reminding myself that no matter how high the numbers of people testing positive, it was for the good because these people had a shot at getting treated before they became completely disabled, which is what happened to me. That was why I became involved in Lyme awareness in the first place, so that others would not have their lives pulled out from under them the way I did.
But that all changed a lot today when my Mom called me in to her room and handed me a piece of paper. As I began to read it my stomach seemed to lurch as I came across the line I was dreading, Lyme – Positive. It took a minute to really sink in what I was reading, but my mother has indeed tested positive for Lyme disease.
Now, for those who question me when I say that the current laboratory tests for Lyme are inaccurate, you need to know that she has been tested at least twice since I became sick, and both of those tests were negative. This third one was CDC positive, and no question about it. (The NYS Dept of Health statistics for LabCorp testing for Lyme is a 34% accuracy rate.)
It was kind of a slap in the face for me to realize the woman who has been fighting so hard for me as my biggest advocate and supporter, the woman who opened her home up to me when Lyme made it impossible to have my own home anymore, the woman who is so willingly spending her nest egg so I can get the treatment I need to get my life back again, now has to face the same disease for herself that she has fought so hard against for me.
We will face it, deal with it and find a way through it. The messages I kept giving my friend and her daughter have been ringing in my own mind all day for myself, somehow it will all work out and we will get through this. But it is certainly not fair that so many more people have to deal with the living hell the rest of us with this disease have to go through.
So this is where I find one of those Lyme Catch-22′s. While I am so happy the message of awareness is spreading and people are taking that message to find out earlier instead of later that they have the disease, with every person diagnosed I feel a twinge of sadness at the success of the awareness campaigns, because I know what it means to each of those people who now have to fight this disease.
I found out when it was too late to get treated and still go on with my life. By the time I found out I had Lyme disease, I was completely disabled and watching the life I knew fall through my hands as if my whole life had turned to dust. So the blessing in all of this is many of these people are finding out before they get to that point, and that is a wonderful thing.
But it just reaffirms my anger that this disease has been allowed to run rampant for so long. That the medical community in general has ignored the reality in front of their own faces. That we have allowed business men and women dictate our medical care instead of the doctors who actually know what they are doing. It disgusts me that the corruption and greed on so many levels has allowed this disease to evolve over the last 30 years to the point where we are now.
I have to just take a deep breath (or perhaps I should take several) and put that anger back into my determination to raise awareness and save lives. Every day this fight gets more and more personal, and today it took on a whole new level of personal as I read my mother’s Lyme results.
My commitment is stronger than ever now to this fight. It’s no longer just a fight for myself, it’s for all the others who have to face this new reality. Please join me…I can’t do it alone. The Lymenaide Awareness Team cannot do it by ourselves. We need each and every one of you. Don’t do it for me….do it for your loved ones, because any one of them may be the one who will need you to fight for them.