After my Lyme Titer, the next step was to have a Western Blot done. It's the only way to get a "confirmed case." On a Western Blot it looks for bands. What I mean is for example, when you get the chicken pox your body goes into attack mode. Natural antibodies are produced. This is the case with strains of the flu. Once those antibodies have made them self known they will show up in the blood as having once fought an infection thus keeping you from getting that infection again. It's like a "antibody blah blah blah was here on whatever date." So, while it is possible to get the flu many times during your lifetime, you are experiencing a different flu probably each time. This is why the medicines change. When our body doesn't naturally produce the antibody, then an antibiotic is taken to bring it out and make it fight.
When your body is first infected with Lyme antibodies come out to war. Like in the movie Rudy, they fight!fight!fight!. Sadly they don't win win win without help. Unless it's caught early (and this is even debatable) they get tired of fighting and eventually give up. They start to think that the infection isn't a foreign invasion but belongs in the body and they let it start taking over.
On a Western Blot according to the CDC there must be 3 bands show up. Meaning certain different antibodies came to war. This is fine and good for the person who was just infected, but for the person who's little soldiers have gone dormant..........thrown up the white flag.......
I had two Western Blots performed and both times I got a negative test. I only had one one band show up. The titer was positive, the one band I had show up was igm 23. Now this doesn't mean much to you, but for me even though the CDC was not willing to recognize my positive confirmation, it was a positive. There are some bands that can show that may mean other infection not specific to Lyme thus giving a false positive, but for the igm 23 it is Lyme specific meaning. I was positive. Now I had to find someone to treat me. Easy you say? A doctor wasn't going to touch me unless I had a state and CDC confirmed case. It's just not that simple.
Lyme Disease is a controversial disease to treat. It is believed it was accidentally released from a place that houses infectious diseases and diseases of bio-warfare. UTMB in Galveston has a facility like this. This one was off the east coast on an island by Old Lyme, Connecticut. This is how it's name came to be. The east coast has a higher populous of infected than any other area in the US. I'm gonna go fast here so keep up or read slow.
The only real known treatment for Lyme is long-term high-dose antibiotics. It is a powerful bacterial infection that is spreading faster than HIV/AIDS. The antibiotics have to continuously fight. When you have had Lyme for so long the body has stopped fighting, you must take these antibiotics. Average precaution when have been bitten by a tick is to watch the bite site and your symptoms for 30 days. People, by then it has invaded and it too late. Because of the long term treatment and it's no real cure (there isn't one) insurance companies do not always want to pay for the hundreds of thousands of dollars. Doctors do not want to treat because the insurance companies do not want to pay. Government backs them on this. (until recently, laws have been changing even right here in Texas) Government back them because "they made a mistake". So, doctors started loosing their licence to practice. They had to go into hiding. You can't just look at your provider handbook or go to findadoctor.com and look up doctor to treat Lyme. As a matter of fact, the doctors that do you can't just call them up and make an appointment for your Lyme.
I'm going to attach a clip to a documentary at the end of my post. I hope you take the time to watch it. It can explain it all much better than I can. If you have Hulu or Netflix you can watch the whole screening. I encourage to you to watch the whole story. It was here I sent my friends and family to when I was first diagnosed.
So, now I have to find a doc to treat me, but have no where to go. No one to turn to. I'm alone. All alone. I felt like everywhere I went people looked at me like I was a leper. Yes, just my own paranoia. But I was marked. As excited as I was to finally find out what was wrong, I quickly realized and told my husband that it would have been easier to have been told I had MS, because at least I could have found treatment and doctors willing to help me. Even when first diagnosed with fibromyalgia, I didn't have to take a test to prove I had it. They just gave me a pill. There was something that couldn't be proven, yet doctors are willing to treat it everyday. But something that could be proven, no one wants to help. Such a hopeless feeling. I was already ready to give up.
Then I found the forums. Then we found doctors willing to treat. In New York, Missouri, California......no one in Texas. Long story short, I was put into contact with people involved with the Texas Lyme Association. They placed me with a doctor in Houston. We had almost booked a ticket to New York when I got the phone call about the doc just an hour away.
So she started me on oral antibiotics. Now, when you have Lyme and the immune has been suppressed and is shot like mine is, you have to take these antibiotics to wake up the antibodies. As they wake up the war is back on and this time its a lot more intense. It's like full blown flu times 10. As the body wakes up the bands start showing in the blood work. Now I had a positive CDC confirmed case. It was officially official. What started off as 1 sleepy little band turned into 7 over a few months. With Lyme you have to get sick to get better, much like a cancer patient going through chemo. Remember in my first post when I told you to make note of me always coming home sick from the hospital? I was being given high doses of IV antibiotics as everyone gets when they're in the hospital. My body was having a reaction to them in a positive way. So much was starting to finally make sense and I just knew I would have this thing licked in no time and a few months of being knocked off my feet was gonna be worth it.
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