[Editor's note: A post in behalf of one of HH's long-time members: Skins Fan '77]
My name is Joe, and I have Late Stage Chronic Lyme Disease. I first joined Hogs Haven in November of 2009 when I could no longer get out of the house or work. This site has become the place where I can hang out and talk about one of my passions… The Washington Redskins. Over the last 2 1/2 years, I feel like I have gotten to know a number of you who frequent here daily.
Roughly 25 years after the recognition of HIV AIDS, there are effective treatment protocols, greatly improved prognostics, and public education about prevention. The causative agent for Lyme disease was discovered in 1981, and the disease itself was recognized in Lyme, Connecticut in 1977… so, 25 years have also passed since the discovery of Lyme disease, and yet the medical establishment, researchers, and the public at large are still largely ignorant when it comes to the disease.
I can't begin to tell you how frustrating and infuriating this can be for sufferers of Lyme. We are told we're crazy, and that our illness has a psychiatric cause. Most doctors are afraid to treat patients and in some instances refuse care altogether. If you can get a proper diagnosis, can find a doctor who is Lyme literate and willing to treat you, then all you have to do is have deep pockets so that you can fund your treatment program… the insurance companies will ALL stonewall you and refuse to pay for treatment.
I really wish that I was making this up, or that I was wrong about anything I've written above. Those of you who are reading this who were also suffering from the disease, already know that it is the truth.
I've been wrongly diagnosed by such noted institutions has the Mayo Clinic, Johns Hopkins University and the University of Virginia. I've been refused treatment by four doctors (so far) and my out-of-pocket expenses have now exceeded $125,000 in the four years since I became ill.
I'm telling you all this so that you will take this seriously, you do not want to get this disease and not get treatment immediately. It appears I was first infected in 1986 at the age of 22–I was not properly diagnosed until the end of the year 2008 at the age of 44. Just like any infectious disease, the younger, the older, and the immune compromised will always suffer greater circumstance. The longer the disease is inside your body, the harder it is to treat it. So, it appears I've been infected for over half my life and didn't start treating until I was almost 45, a difficult road to slog.
I'll included a couple links at the end of this that have proper information on testing, and diagnosing lyme disease. I also highly recommend renting "under our skin"–a documentary done on Lyme disease that is available on-demand through Netflix, and various places on the Internet. I had at one time three DVDs that I lent to people, and I only have one left (I can only hope that the other two are still circulating around educating the public).
Lyme disease has been confirmed in all 50 states and many countries, if you're reading this, you're in a place that is susceptible. If you live on the eastern seaboard between New York and Northern Virginia you are in the "hot zone"… the highest concentration of infection rates in the world. The other nasty place is in the upper Midwest–Wisconsin, Minnesota and points south of there.
If you're interested as to why the strange pattern of hotspots, I suggest you read "Lab 257" (available at Amazon in all forms).… I'll let you draw your own conclusions and would love to discuss the book with anyone who has read it.
For those of you who are not going to click on the links because you don't have time, I'm going to give you a few hard facts that you need to know (then I've done all I can, the rest is up to you)
Not everyone who contracts Lyme disease gets a bull's-eye rash, only about one in three people–if you do get a bull's-eye rash you absolutely, unequivocally have Lyme disease, get treatment immediately (like your life depended on it, within hours, not days) There are other ways to contract lyme disease other than the bite of a tick.
30 days of antibiotics is not an effective cure for Lyme disease, any doctor who insist it is, is doing a great disservice to their patients.
Lime disease is hard to get, and easy to treat… THIS STATEMENT IS FALSE! It is actually the other way around.
Lyme disease can cause many different symptoms depending on the patient's history, genetics, and many other factors… if you have a lot of unexplained things going on, get properly screened.
AND THE MOST IMPORTANT–Lyme disease cannot be properly diagnosed by blood work alone, run very fast out of any doctor's office when told "your test is negative, you cannot have Lyme disease" this is what happened to me, even after there was some form of testing in the late 80s early 90s, I was still refused treatment for lyme disease based on blood work alone… all the way up until the end of 2008… please do not let this happen to you or anyone you know.
Thanks for taking the time to read this,
Joe aka Skins Fan '77
Learn more about Lyme Disease: http://www.ilads.org/lyme_