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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 []

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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

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Celebrating My Independence from Gluten

July 21st, 2011

Summer is a great time for traveling. Many spend time outdoors attending fairs and festivals enjoying the nice weather with family and friends. But smelling the fair food can really make me feel like I am missing out on some of the fun. While we are all watching our waistlines, we definitely give in to temptation occasionally when we are out celebrating with family. Part of the fun of going to a carnival is getting to dine on your favorite greasy treat, be it a corn dog, ribbon chips, fried Twinkie or the classic funnel cake.

I have just returned home from visiting my younger brother, Justin, who is now living with his wife in Colorado Springs. Traveling from Indiana by car with my husband and son, we saw many sights and had a wonderful trip. Of course I still packed my cooler full of gluten-free goodies because I had no idea what to expect along the way. When we finally arrived in Colorado, I dined on the best gluten-free pizza I’ve ever had from a take-out restaurant. Plus the grocery stores were fully stocked with organic whole foods and gfree options. I can attest to the area being a gluten-free mecca and would happily move there, if I could convince the rest of my family.

My dad unfortunately passed away this year, so I didn’t get to visit with him on Father’s day or the 4th of July. So my trip to Colorado to see my baby brother was a much needed visit. All of us went on a day trip to the Royal Canyon Gorge park. Not only did we get a gorgeous view, but there was an incline railway, a petting zoo, a few rides, along with the typical fair food. My brother bought a funnel cake, and I reminded him to eat slowly and to chew his food properly. You see, the last time he ate funnel cakes he almost choked to death.

Gluten-Free Funnel Cake

Gluten-Free Funnel Cake

My mom is a bit of a spendthrift and as she didn’t like spending $5 on a small funnel cake at the local Forest Festival. She thought, “Why not have funnel cakes anytime we want?” So she bought a funnel cake kit. My dad would mix these up and my younger brother would practically inhale them. One night, Justin ate one too many and it upset his stomach. In a late night run to visit the porcelain god, his stomach in angry protest began returning the food from whence it came. Unfortunately, Justin didn’t chew his food properly and some funnel cake lodged in his throat. Luckily my dad was up late that night, probably having problems sleeping. He heard Justin being sick in the bathroom and was able to give him the Heimlich Maneuver. Dad saved Justin’s life that night, true story. So after this happened to my little bro, he is able to eat funnel cake, so why can’t I? Oh the Gluten.

What if I told you there is a super easy way to make a gluten-free funnel cake, easy enough that even I can make it? So easy I made two pretty perfect ones my first time trying. The idea came to me when I was telling my mom about my brother risking eating a funnel cake again. I was reminiscing with mom about how dad use to make them. I asked her if the batter was anything like pancake batter and when she said yes, I instantly thought about Pamela’s Products. After I got off the phone, I whipped up a batch.  I’ll warn you though, they are a bit dangerous. Please chew them properly. Eat slowly and enjoy!

Gluten-Free Funnel Cake Recipe
(Follow the directions on the Pamela’s Products Pancake and Baking Mix for Waffles)

1-1/2 cups Pamela’s Mix

3/4 cup water

2 eggs separated

2 TBSP oil

You will also need clean vegetable oil for frying. You don’t want your funnel cake to taste like onion rings. For the topping you will need enough powdered sugar or brown sugar & cinnamon mix to dust on top.

To make the batter, first whip the egg whites until they are stiff. In a separate bowl combine Pamela’s Mix, egg yolks, water and oil until there are no lumps. Fold in stiff egg whites.
Gluten-Free Funnel Cake
I mixed my batter in a large Pyrex measuring cup with a spout. I filled a medium size pot with vegetable oil. Once the oil was up to temperature, I drizzled the batter into the hot oil in circular and criss-crossing motion. I let the funnel cake fry until the bottom was golden, then flipped it to brown the other side. When it looked golden and delicious I placed it on a paper plate and tossed powdered sugar all over it. Another option would be to top them with brown sugar and cinnamon, which would taste more like an elephant ear that you would purchase at a carnival.

Upon tasting my deep fried treat, I thought it must taste so good because it has been so long since I have had one. So I had my hubby taste it and he thought it was pretty close to what you might get at a fair. Unfortunately it doesn’t reheat well, so just make as much as you can eat in one sitting. Using 1-1/2 cups of Pamela’s Mix yielded two good sized funnel cakes.

 

Diary, Recipes , , ,

Celebrating One Year!

February 27th, 2011
Celebrating One Year GFree

Celebrating One Year Gluten-Free

On February 25, my family went out to Arni’s to celebrate my one year anniversary of when I went gluten-free. I’m sure that last year around this time I was probably thinking I would never eat pizza again, but just this past month one of my favorite restaurants started serving up a GFree Pizza that is actually pretty tasty. Frankly, I couldn’t think of a better way to celebrate this life-changing event!

When I cut gluten out of my diet last year, my health improved significantly. While it was a difficult diet to follow in the beginning, the rewards of doing so were practically immediate. Withing three days of adhering to a strict gluten-free diet, the inflammation in my body began to recede and I had more energy than I’d experienced within the past four years. I remember crying in front of the butter at the grocery store, wondering if the “natural flavor” in the generic butter meant it might contain gluten. The possibility of something as simple as butter containing gluten was overwhelming to me at the time. I quickly found it easier to avoid processed foods altogether, with food labels that require a chemistry degree to decipher, and stick to whole foods that I cooked at home. I think by doing this that I also eliminated many chemicals and preservatives that my body was reacting to as well.

At one point I noticed that I was getting nauseous eating baby carrots. My doctor didn’t think I was allergic to carrots, and he suggested I try eating organic carrots to see if I had the same reaction. I tried the organic carrots and was able to eat them just fine. So from then on I started buying organic products whenever they were available. This also has helped eliminate my exposure to toxic chemicals and has reduced some of my symptoms.

About two years ago, even before I cut out the gluten, I swore off Monosodium Glutamate (MSG) and artificial sweeteners. Doing this really helped alleviate some awful migraine headaches. So I must say that it isn’t just through avoiding gluten-full foods that I have reduced my Fibromyalgia symptoms, but it has been a process of eliminating my exposure to variety of triggers. However, I believe that going gluten-free has had the most significant impact on the overall improvement of my health thus far.

Going gluten-free has certainly improved my health over this past year. I have lost about 45 pounds without counting calories. I didn’t concern myself with counting calories or tracking fat intake because it was such a challenge just to make sure that I wasn’t ingesting gluten. I’m not sure my body knew what to do with all the chemicals in the processed foods. Possibly my liver couldn’t process things fast enough, so maybe it just manufactured fat and shoved the chemicals into the fat cells thinking it would get to that later. Also, a skin rash I’ve had on my arms since my early teen years has almost completely vanished. How interesting that the rash originally appeared around the same time I was diagnosed with Irritable Bowel Syndrome (IBS). I have fewer problems with my digestion now, although I still suffer from reflux. I cannot seem to stop taking the Protonix, a proton pump inhibitor, that I have been taking for over four years.

I am still having occasional flare-ups, and so I’m trying to figure out what some of my other triggers might possibly be. On my list of suspects are corn, soy, chocolate, cinnamon, nutmeg, and probably vinegar.  The last four are known to be  high in histamine or produce large amounts of histamine in the body. I have horrible reactions to cinnamon and nutmeg; my arms get stiff and heavy, with numbness and tingling in the mouth, accompanied by persistent coughing and fatigue. Chocolate seems to make my skin crawl, and I’ve always attributed this to the caffeine. Cinnamon and nutmeg are high in benzoates, and I know I have reacted to a salad dressing that has had sodium benzoate as a preservative.

I’ve been reading Dealing with Food Allergies by Janice Vickerstaff, and apparently it is possible to have an intolerance to benzoates. She also discusses the possibility of developing a histamine intolerance caused by a deficiency of two enzymes, diamin oxidase (DAO) and histamine methyltransferase (HMT). Histamine tolerance may also be reduced by autoimmune diseases and medications, such as antidepressants. Since histamine is responsible for triggering the immune response, it becomes difficult to distinguish between a reaction due to an allergy, or a reaction that has resulted from high levels of histamine in the system. Without the proper enzymes to break down histamine, it can build up in the body. One way to cope with reactions due to histamine toxicity is to modify your diet and eat foods that are naturally low in histamine, and foods that do not trigger a release of histamine to the body.  Dr. Vickerstaff recommends trying a histamine-restricted diet for a period of four weeks to see if it will alleviate symptoms.

Low Histamine Diet

I think that it is worth a shot to see if my remaining symptoms will subside. I’ve seen many fibromates talking about how they avoid the deadly nightshades. I think that it is interesting that these are also high in histamine and should be avoided on this diet. I’ll make sure to post if this also makes a difference.

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