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A New Year, a New Diagnosis

January 6th, 2013

Lupus often results in a butterfly shaped, or mylar rash, on the face.

Lupus flares often leave patients with a characteristic butterfly-shaped rash.
Photo Credit: University of Minnesota

2012 went out with a bang as I found myself subject to another battery of lab tests to check for more autoimmune illnesses. Most of the time my blood screenings are perfectly normal, however this time was an exception to the rule. I received a dreaded call from my doctor’s office alerting me to the fact that I probably have Lupus, but they couldn’t be sure with 100% certainty.  Dr. House will tell you, “It is never Lupus.” But in the real world sometimes it is. The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus1.

Lupus, like Lyme Disease, is often called the great imitator because of its ability to mimic other diseases. Similar to screening for Fibromyalgia, other illnesses must be ruled out before a patient receives a diagnosis of Lupus. One would hope any screening for Fibromyalgia or Lupus would included testing for Lyme disease, however there are glaring inaccuracies in screening for Lyme bacteria. Blood tests for Lupus aren’t 100 percent accurate either. Sometimes patients have all of the symptoms without positive labwork, so doctors find themselves making a diagnosis based upon symptoms alone.

Much of my bloodwork for Lupus was negative, however I did test positive for the Lupus anticoagulent that can lead to blood clots. Also my body was producing a small amount of antibodies to double-stranded DNA (anti-dsDNA). These are antibodies that attack the DNA, the genetic material inside the cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus, but lupus can still be present even if these antibodies are not detected2. This autoimmune response means that my immune system cannot tell the difference between foreign invaders and my body’s healthy tissues causing inflammation, pain, and damage in various parts of the body.

I am a bit confused by this new diagnosis and I find that I have more questions than answers. Do I really have Fibromyalgia? How long have I had Lupus, if it is really Lupus? Did the Lyme bacteria and other tick-borne coinfections trigger this autoimmune response in my body? Will the Lupus go away after receiving proper treatment for the Lyme Disease? Could I have drug induced Lupus from the aggressive antibiotic treatment I have been undergoing for Lyme Disease and other tick borne coinfections? How will this new diagnosis impact my quality of life? Will I ever feel well again? Hopefully this new diagnosis will provide a better pathway to treating my illness, but as of now I am feeling quite ambivalent.

 

 

  1. Statistics on Lupus []
  2. Laboratory Tests for Lupus []

Diary , , ,

Fighting a Hard Battle

June 24th, 2012

This past fall, I finally had to leave my job due to my illness. I tried very hard to manage my illness by making dietary and other health changes, so that I could continue working as long as possible. I absolutely loved my job as a school librarian and it was a tough decision for me to leave behind a career that I felt very called to do. My primary care physician had been suggesting the possibility of me applying for disability for well over a year. He isn’t the type to issue a stop work order and wanted me to come to terms of the seriousness of my illness on my own. So being that I am extremely determined, and well lets just say stubborn, I continued to push myself harder than I should. And I got very sick. Basically it came down to a point where I was so sick that I didn’t even have the option to continue what I was doing.

I have been embarrassed about my situation and honestly haven’t been very open with family and friends. So, I didn’t feel like sharing what I have been going through with strangers on the Internet. There is a social stigma that comes along with being disabled and I have not been very comfortable with the association. Some people think that Social Security Disability is a welfare system for people that are too lazy to work. That is simply not the truth. Social Security Disability is public assistance for people who are unable to work and it is a program that I have paid into while being employed. While I feel that I am entitled to receive benefits, it is a tough battle to fight. I know that there are always people that try to take advantage of the system, and this has made it harder for people that are actually justified in receiving benefits to get the benefits that they need. I hear stories everyday about people that cannot walk being denied benefits. I also hear about people getting their first check after they have already died.

Fibromyalgia is an illness that is diagnosed by process of elimination, as well as the symptoms the patient has. Pain is all subjective and there is no blood test that will tell my doctor how sick I am. I have a medical history that is a foot high when it is printed out, but I have been denied not only Social Security Disability benefits, but also benefits from a Long Term Disability policy I had paid into for several years. This of course increases my stress and anxiety, making my condition more difficult to manage. I have had to hire a lawyer to represent my case, but I am told it could take up to two years to receive any benefits.

What seemed to be  missing from my case was some sort of blood work that was abnormal. Of course I have had a few things like high cholesterol and high insulin, but those aren’t considered debilitating. I may report pain to my doctors and they note it in my chart, but there is no test that shows how bad I hurt. Just my words….until two days ago.

Two days ago I was contacted by a clinic that had run a blood test for me. I went to see a new doctor after posting a message in an online chronic pain discussion group. An individual contacted me and said that they thought I should get tested for Lyme Disease. I am familiar with Lyme Disease because my mother has suffered for many years with the illness. When I first became sick, I requested that my doctor test me for Lyme. All my symptoms mimicked what my mother had, so I thought that I might have it too. More than five years ago when I became symptomatic with what doctors thought was Fibromyalgia, my ELISA Lyme Disease blood test came back as negative. So I just brushed the idea aside that I might have Lyme Disease and trusted that my doctors would find what was wrong with me. The ELISA Lyme test has been notoriously bad at actually giving doctors the ability to diagnose Lyme Disease. I mistakenly thought however that testing would have improved in the 20+ years since my own mother was diagnosed. It turns out I made a bad assumption and my original ELISA Lyme test was a false negative. But two days ago my Western Blot test for Lyme Disease by IgeneX came back as being positive. I have Lyme Disease.My Heart Bleeds Lyme Green

Hopefully this new diagnosis will help me find better treatment for my illness. I may even recover from all of my food sensitivities! I am also hopeful that this new diagnosis will help solidify my disability case. But who knows. Believe it or not, Lyme Disease is even more controversial than Fibromyalgia and Chronic Fatigue Syndrome. Lyme Disease is often misdiagnosed as Fibro/CFS. If you want to learn more about Lyme Disease and how you might get tested, please see the resources listed below.

American Lyme Disease Foundation
Find out general information about Lyme Disease

Fibromyalgia, Chronic Fatigue Syndrome, and Lyme Disease
by Bonnie Gorman, RN
Article hosted on the Canadian Lyme Disease Foundation (CanLyme)

Lyme Disease.org
Publishes Lyme Times

LymeNet
Proper diagnosis and treatment is essential. Find a Lyme literate doctor (LLMD) near you. Click on the “Flash Discussion” link on the left hand side. Find the discussion “Seeking a Doctor” to get a referral. Many doctors have lost their practice for treating this controversial disease, so patients are referred very discretely.

Under Our Skin
A documentary about Lyme Disease available via Netflix Streaming

Diary, Disability , , ,

2012 Gluten Free Easter Candy

March 8th, 2012
Comments Off on 2012 Gluten Free Easter Candy

Chocolate Covered Peeps Spring is just around the corner and that means it is almost time to fill those Easter baskets with yummy gluten-free treats! A few of my favorites are the chocolate covered Peeps, Reese’s Peanut Butter Eggs, and of course you cannot forget the Cadbury creme filled eggs. With so many manufacturers getting on the gluten-free band wagon, there is more to chose from this year than ever. Search the candy database at myglutenfacts.com or see an alphabetical listing here.

I want to urge you to be extra cautious this year as many companies are trying to make an extra buck labeling their products as gluten-free, but maybe they are not really certified. Please read the product labels. There has already been one recall issued for a Peter Rabbit Deluxe Easter Mix that was made by Jelly Belly. The mix contained malted milk balls. Any chocolate that has malt flavoring would not be gluten free as that flavor comes from barley. Have a Happy Easter everyone!

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