Posted 8/20/2012 9:08 PM (GMT 0)
Hi...this is not my first time reading posts, but it is my first time posting. I've been sick for over a year continuously, but many bouts of illness over the years. I'm a 26 year old woman. Over this past year, and over my lifetime, I've been to the ER and primary care doctors more times than I can count. I am on government health insurance, not because I can't afford regular healthcare, but because insurance companies won't even look at my application: I am denied immediately on pre-screen. The funny part is, I haven't even been officially diagnosed with something..so they can't call it a "pre-existing condition"...I've just simply used the "amazing healthcare" in this country too much. And what has that gotten me? I have had the following things said to me just within the past year:
"All your tests are good, you're good to go"
"Are you emotionally disturbed?"
"What drugs are you using?" (Not "are you using drugs?")
"You must be having hormonal problems. A lot of females in their 20's have these 'issues'"
"Whatever 'problem' you claim to have had seems to have 'cleared up'"
"We can't do anything for you, you should see a psychiatrist"
""You are suffering from a repressed childhood trauma" (how would they know?)
"I wouldn't worry about it too much" (after having a seizure, and waking up not able to breathe)
I've been ridiculed and emotionally and verbally abused by paramedics. One, convinced I was "faking it" picked my arm up and let it fall on the metal sidebar of the gurney to try to "get me out of it." I was left with a huge bruise on my arm from the impact.
Finally, one day my boss was telling me a story about how when his son was a small child, he had bell's palsy and it took them a few months, but they finally diagnosed it as Lyme disease. Something I had never considered. Even though my last semester of college, I woke up one morning, the right side of my face drooping. My roommate rushed me to the ER where they told me it was "Bell's Palsy" and they "don't always know what causes these things," (side note: I went to school in a suburb of Philadelphia, where we actually devoted one whole class to lyme disease, because the deer population is so huge) but that it was "nothing to worry about and would clear up on its own." Well they were they were right...the Bell's Palsy went away, but I never felt right after that.
Fast forward to a few months ago. I decided to do some research. The more I looked up Lyme disease, the more I was convinced it could be that. The doctors were still in my head though "it's probably just all in your head, it's just you."
I also went back to my electronic medical records from last year when i started to have "seizure-like" activity. One of the doctor's ordered a Western Blot test, as an afterthought. I was shocked when I read the results of that test and the 23IGM band result was "PRESENT." I was never told about this. Then I learned about the CDC regulations and how you need 2 of 3 IGM bands to be considered positive.
Also, I've had, and still have so many symptoms on the lyme list, I finally found an "LLMD" and drove 2 hours to see him. I talked to him for about 30 min. He said he was convinced I have lyme disease. He also said that young women are often rejected and abused by doctors. He started me on doxycyclene for 30 days. I was so relieved to have someone take me seriously and not treat me like "some silly girl" even though I'm a well-educated, self-reliant professional woman. I was very relieved to have answers. I could explain to my co-workers why I've been so out of it.
Doxy, for one week, took away my persistent fever. Then it came back and was like nothing had changed. When doxy was up, I went back to the doctor and was extremely disheartened when he said "I was sure it was lyme disease" when I told him the doxy didn't do anything after the first week. He said he was starting me on Ceftin to see if that did anything. To me, it now seemed like he didn't really know lyme disease well. I read on forums like this that if you have chronic or advanced lyme disease, 4 weeks might not do anything.
A couple of months ago, before I found LLMD #1, I also found a Lyme clinic. They specialize in Lyme and they claim an 80% cure rate. They seemed really legit, however the soonest they could get me in was late August. It was June. I booked the appointment just because the wait was so far off and I wanted options. Soon after that, I found LLMD#1, but I never cancelled this other appointment because of a gut instinct.
I'm going tomorrow. But I'm so scared.
I'm scared because they're going to run all of these lab tests. What if it comes back "fine" again...what if it is all in my head? I can't think of anything else, I feel like I've been through all of the options and I can't live like this anymore. Also, I think I might be having some mental illness issues. I live alone, and I haven't been at work a lot recently, but a few friends have commented that I'm being paranoid, and after all I've been through, I think it might have finally broken me. I think I might be depressed.
I'm afraid to say these things to the clinic though, because if they see my medical records and doctors have written anything close to what they've told me, they'll already assume I'm crazy. So if I add personally that I think I might have mental health issues, I'm afraid they won't take me seriously at all.
I just want help. I just want the old me back. The adventurous one who used to grab the bull by the horns and go SCUBA diving, sky diving, rock climbing, marathon running. I have no one here to support me or back me up. I'm so afraid they'll just label me again. I don't think I can take the humiliation of being I'm told I'm not sick again. Sorry this is so long, I guess it's just been waiting to come out. Please tell me if you've had a similar experience, and maybe some words of support. (I'm still afraid I might bail on this appointment last minute because I'm afraid). Thanks for reading!