What I saw and heard next changed my life. The news segment was about a documentary movie called Under Our Skin. They were saying how all these people were misdiagnosed for years, and eventually found out they had Lyme Disease. I couldn't believe my ears! While watching, I felt an instant connection with these people. They sounded like me; our stories were so similar. I felt like that was me on the TV--but wait--I had tested NEGATIVE for Lyme in the past.
The next day I couldn’t get the news segment out of my mind. I was ridiculously giddy. My naive self feels stupid about my excitement now. If only I knew what I was in for. I did online searches for the movie and looked up Lyme Disease in Chicago. I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn't really expect a call back. No one believed me before, right? Why would someone call me back? Well, I got a call back from Lauren within a half hour. Wow! It turned out she was in the news segment. Her whole family has Lyme Disease; she lived right here in the suburbs. She directed me to where I could go for the much more accurate test called a Western Blot Blood Test done by IGeneX.
That day, I sent out a FB message and email to my friends, inviting them to come see Under Our Skin with me. No one responded. Who can blame them? They didn't know anything about this "Lyme" thing, and it didn't affect them, so why should they care? I get that. I do. At least my little sister Adriana came with me. Thank you! We saw the movie and I think I sobbed through most of it. I felt like the people on the screen were telling my story, without even knowing me. It was a crazy experience.
I went for my Western Blot test and waited a month for the results (that's how long it takes). I had prepared myself for the grueling results and expected them to be positive. I had all the symptoms. Well, my doctor read--misread--the results and told me they were negative. I cried. I cried so much. I was glad I didn't have this horrible disease, but then what was wrong with me? I left with my bittersweet answer and never felt more defeated. Now I was depressed.
About three months later, I went to the Lyme Support group to see if I could sell some "Awareness" jewelry. Lauren heads the group and asked to see my Western Blot results. We went through them together and her face went blank. She just looked at me with this face of “uh-oh,” turned to me and said, "We need to talk to Dr. ***** right now and you need to see a Lyme Literate doctor right away." I started to shake, had a minor panic attack and walked out of the room. The support group is in the same office as the doctor who ran my Western Blot.
After re-reading my results, Dr. ***** pulled me into a room, sat me down, and told me she was so sorry. She had read the results wrong and I was in fact POSITIVE for Lyme. I was bawling at this point and just wanted to collapse. I could hardly breathe and for a moment, really wanted to die. She was crying too and was very apologetic. It was surreal, sad, and stressful. Was this really happening? Or was this another bad dream? I hold absolutely no ill-will for this doctor. It was a mistake and although I was angry for a moment at what was happening, I forgave her right away. I love her! She has been a blessing in my life.
Now, I had to come back to terms with the results being positive. But this time, I had a huge amount of support around me. I had new friends who would be there to help walk me through it. I was on solid ground, even though it felt like quicksand. This was a bittersweet diagnosis, because as much as you want an answer, this answer told me I’d be screwed for a very long time--possibly forever. The “Old Tiffany” probably wasn’t going to come back, at least not for a long time. I was going to be the “Always Tired, Always Hurting, Always Home, Boring Tiffany” for an indefinite amount of time.
My friend helped me get in with her LLMD (Lyme Literate Medical Doctor). I got an appointment two weeks later with his PA. Do you have any idea how amazing that is? My doctor has a 400 New Patient Waiting List. I was very lucky, and I've been in treatment since October 2009. I’m already on my third protocol for treatment.
Although I probably got the Lyme from the tick bite, I could’ve also gotten it from a horsefly bite or other insect. I used to go up north to Land ‘O Lakes, Wisconsin where I had been bit many times by many little punks.
Lyme disease is an infection caused by Borellia Burgdorferi, a type of bacterium called a Spirochete carried by ticks, fleas, deerflies, horseflies, and mosquitoes. Lyme disease has three stages, and at any stage Lyme disease is very dangerous to somebody’s health. Stage One is known as the early stage, Stage Two is called early disseminated, and Stage Three is called Chronic Lyme. Because it "hides," most people take years to get the proper diagnosis and it ends up being too much, too late. Mine took six years.
Along with Lyme come a lot of “co-infections.” The co-infections are what make most of us Lymies really sick. They are called Ehrlichia, Babesia, Bartonella and some others. There are parasites as well, which I also just tested positive for. Lyme and its punk friends may be caused by a little itty bitty insect, but causes so many big problems. It’s led me to Hashimoto’s Disease (thyroid disease), endometriosis, ovarian cysts, Reynaud’s, daily migraines, GERD, anxiety, and a ton of other common Lyme issues.
As you can imagine, it’s a tough disease, and insanely hard to treat, making you feel like you’re going insane! It’s hard, it’s REALLY hard. There is no known cure, and no one way to treat it. Most of my Lymie friends are on months of antibiotics, and most get them by IV. Unfortunately, Infectious Disease Guidelines say there is no such thing as Chronic Lyme Disease and believe it can be cured with two weeks of Doxycycline antibiotic. It’s very frustrating and can leave many of us Lymies feeling hopeless. I go back and forth with those feelings--depends what day it is. Because of the ISDA’s ridiculous guidelines, our treatments are not covered by insurance. My bill with my doctor is already over $2,000 and growing. That is all out of pocket plus my medications and supplements that insurance won't cover--or partially cover. Just one of my medications, Mepron, costs me $230.
I try to sell my jewelry to help pay for the medical costs. But even that's hard, because my hands hurt and cramp too much to make more jewelry. It's a catch-22.
One of the closest “Lyme Literate MD’s” is in Fond du Lac, Wisconsin . I drive three hours each way to see him. I just got diagnosed in October and have been told I have at least another year+ of treatment. Right now I take more than 45 different medications, supplements, and shots, in hopes that one day I will be at least a little better. For now, I mostly stay home and live life vicariously through online friends, wishing I could do what they’re doing. Wishing that I could go out for at least one night of fun with friends or family, and not be laid up in bed the next day for over 17 hours. I have hope, I have strength. Even though it may not seem like it at times, I will make it through.
Tiffany Gonzalez, Illinois