Positive

So I decided to go to my Rheumatologist appointment despite having very little symptoms of Lyme Disease or any of my diseases such as Lupus, and I want to thank those who commented here and on Facebook who convinced me to go.

I saw the doctor at the Cleveland Clinic and explained to him my situation, that I had Lupus and some other things but would like to be tested for Lyme due to past symptoms, a past positive test and a current symptom of fatigue.

This is really scary but he was the third doctor here to ask me if I had seen a bullseye rash, and I hadn’t. Doesn’t he, a rheumatologist who claims to specialize in Lyme Disease, know that 50% of Lyme patients have never had a bullseye rash, or that they might have not have noticed one since it could have been on their back or scalp?

He also talked to me about my Lupus and judged me not to have it, even after I told him I have tested positive for it many times.

It seems that the Rheumatologists of the Cleveland Clinic, from what I hear from friends and my own experiences, are fond of telling people they do not have any of the diseases that they have been diagnosed with previously. I’m not really sure what’s going on over there but this is the only hospital my insurance company will let me go to.

He ended it with, “I don’t think you have Lyme, but if you insist I will test you for it.”

I insisted.

He said he would also test me for Lupus.

When he called me with the results he was unapologetic but did sound shocked as shit that I was indeed positive for Lyme and was also positive for Lupus. He prescribed a two week course of antibiotics. I haven’t started that yet because I am afraid of a Herxheimer Reaction, which can actually make you sicker before you get better. My friend who has Lyme and is pretty well-versed on the disease, advised me to start taking it on Monday, when Tyler will be in school.

But as I researched further and looked at my test results, more questions arose. What I tested positive for showed that I had been recently infected, and the other test for long-term exposure for Lyme was negative. Do you mean to tell me that I had to move to Ohio to get Lyme? This would mean that all of my past symptoms were not in any way related to Lyme. In addition, the test can be a false positive so do I even have Lyme?

I have a call into the doctor about my results and any future testing. I will keep you posted.

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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5 Responses to Positive

  1. Junie says:

    I am acually shocked he didn’t ask to go in and talk about the results. Wishing you all the best honey when you call.
    Junie´s last blog post ..REMOVED

  2. Tricia says:

    I had a similar experience at Mayo. Where I was diagnosed with Hashimoto’s and then told that Hashi’s wasn’t causing any of my symptoms. I just started blogging about my life with autoimmune disease. Maybe you can relate: http://toughtriciabraveb.wordpress.com
    Tricia´s last blog post ..“What do you DO all day?”

    • mamasick says:

      I have heard that about the Mayo Clinic too, Tricia, that they are fond of undiagnosing you. I’ll take a look at your blog!

  3. Rebecca says:

    Hi. I’m ran across your blog while looking for a sick mom blog. I want to start one soon.

    I have Lyme disease. And a 2 year old. It’s tough stuff, so I understand exactly how you feel.

    I’m glad you got a positive test. Just because your IgG was negative doesn’t mean you haven’t had it for a while. Lyme suppresses our immune system which decreases antibody production which will cause your test to be negative. Always trust your instinct.

    2 weeks of antibiotics is not enough. You MUST find a Lyme literate doctor that will give you more or you will have a greater chance of flare ups for the rest of your life. I found one through the Lyme disease forum at mdjunction.com.

    Good luck fellow Lyme mama!

    • mamasick says:

      Unfortunately, Rebecca, it is very difficult to find a Lyme literate doctor in Ohio. Lyme Disease is rather new to the area. I am also bound by my insurance company to go only to the Cleveland Clinic, which is not all it’s cracked up to be!

      Good luck with your new blog!

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