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Some things will change our lives temporarily, while other things will change our lives forever. As a child I was an active little boy who played sports and loved having fun with friends. Since the third grade though, I’ve battled various illnesses and issues. They may not have made a lot of sense at the time, but they were the beginning of a journey into a much unplanned lifestyle. It all begins with one simple, yet very complicated diagnosis. On Mother’s Day of my third grade year of elementary school I vomited before I went to church. My mom, who is a nurse didn’t think much of it. As any nurse would most likely think she thought I probably just had a stomach bug. Well this vomiting did not stop. As a little kid, I did not know how serious this really was. But I was soon to find out. See if this was a stomach bug it would have lasted maybe a week at the most. After days of still vomiting, with the amount of time vomiting each day increasing, we decided it was time to see my practitioner. The weird part about this was I felt fine one moment, and the next I would just randomly vomit. My doctor also thought I was fine, that it was just a stomach bug, so he instructed me to go on a bland diet. Not too difficult sounding really is it? I followed this bland diet for days, only the vomiting just got worse. I was losing weight, I couldn’t keep anything down, and I got to the point where I was throwing up twelve or more times a day. My mom would tell the doctor, “I was a normal little boy who loved to play and be active but in the middle of activity on frequent occasions I would have to stop to throw up.” Now that the vomiting wasn’t stopping, we knew it was time to start investigating. Doctors started normal testing first such as checking blood work and common allergy testing. Then I had a MRI to make sure nothing too serious was going on. I even had cancer testing done for different types of cancers. All the tests came back negative. At this point I was extremely drained so I started some calcium and other type of nutrient pills/shakes to try to build myself back up and maintain my weight. The doctors weren’t figuring anything out so they tried me on all kinds of medications and steroids. I even saw a specialist from a hospital that re-tested me for allergies. This time there was a diagnosis. They decided I was allergic to wheat, eggs, and dairy. This new diet was very tough. My mom would have to go to special grocery stores and buy expensive foods that didn’t contain any of these products. My food was so expensive that my mom was spending on average about $175 every week just on my food. After a whole year on this diet, I wasn’t getting any better. Still sick and vomiting, I was in fourth grade and weighed less than most second grade girls. Nothing much changed that year. I had special permission to leave the classroom without asking whenever I had to vomit. Fifth grade came and my mom decided to find a GI specialist. She contacted Dr. Miya, a specialist in three fields- Gastroenterology, Allergies, and Autoimmune Disorder. (Thank the Lord Dr. Miya really knew what she was doing). Immediately she started testing. I swallowed a camera pills to see how my stomach was breaking down food. One test I remember I had to have a tube go down my nose and have a balloon open in my stomach for a day, but was allowed to leave the hospital. This I remember was terrible. I walked around with a tube down my nose and a computer on my belt, and remember thinking when people looked at me in public, “I wonder what’s wrong with that little boy”? I had asthma testing done, and even a bone marrow test done which was my first surgery. Dr. Miya also decided to do some more extensive blood work to rule out the rare possibilities and she checked out my eosinophil’s, white blood cells. A proper eosinophilia range is 0 to 100. When she got mine back, they were over 5000. This was bad news to me, but very good news to her. Now she knew what was wrong. I had Hypereosinophila, my first autoimmune disorder. It would cause my white blood cells to skyrocket in number and they were attacking different parts of my body. It was the answer to what was causing me to throw up. Now Dr. Miya had to check out what kind of damage was done to my stomach. She did an endoscopy and found 4 ulcers. With a combination of a few meds, the condition was under control so I could eat and keep food down. Doing better by the end of fifth grade and that summer, I went into sixth grade thinking, “It’s a fresh start, no more worries”. Not long into the year I came down with pneumonia. I got put on antibiotics and felt better, but the pneumonia came back. It ended coming back five times just during my sixth grade year. To make matters worse, I started having psychiatric issues. After getting tested to see if my body could fight off pneumonia naturally, my specialist found out that I don’t produce antibodies to fight pneumonia, my second autoimmune disorder. From here on things got very intense very fast. One night I went to bed feeling great and upon wakening, I had overnight onset of multiple psychiatric issues. I went a long time not telling anyone about all this as I was embarrassed. In 9th grade I finally “came out of the closet” to get help. One psychiatrist (that I don’t see anymore) diagnosed me with five mental illnesses with various subtypes. My psychiatrists knew that this didn’t make any sense. No person can possibly have so many psychiatric diagnoses I was told by multiple psychologists. But I wasn’t responding properly to medications. They weren’t working on me the way they should and they didn’t last over an extended period of time. I would go through the same cycle with each new medication. I would do ok starting a med, but it never did enough, and never lasted. The medication may have helped initially, but I ended up feeling worse than I did before I started it. My episodes lasted from Sixth grade till now. After being told of “crazy true stories” like kids with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections), my docs are pretty sure that I must have a neurological- caused mental illness. I am going to Dent Neurology on the 4th of October. They agree now that my illness might be from having my autoimmune disorders. Plus I may have other autoimmune troubles that haven’t been diagnosed yet. This is great news to me for it’s the beginning of a new road to recovery for me. There is hope for a complete cure, for my mental health to be restored. Although the throwing up, pneumonia, and psychiatric issues would never have happened if it weren’t for the fact that my body cannot naturally fight off some pathogens. My diagnosis of an autoimmune disorder started me on a quest for the truth. I knew what they were telling me wasn’t true for me. I had to seek out the truth about the origins of my psychiatric issues by my own research. My constant research led me to make a connection between the autoimmune disorders and my mental health, a connection I had to point out to my doctors. Back when I was young, before I was diagnosed with an autoimmune disorder someone could have told me “your life can instantly change from the simple to the complicated overnight.” To this day I still cannot completely grasp the concept of it. But it’s true everything from doctor appointments, to testing, to improper diagnosis, to improper medications, to crappy diets, I’ve experienced it all. I will not give up though. We never know what might cause our lives to change or how may change. As for me, though my life changed “The Day I Was Diagnosed With An Autoimmune Disorder”.
My neuro/pandas doctor put me on valtrex for a few months but I started getting horrific side effects rather abruptly: nausea, puking, inability to eat or drink, diarrhea, extreme headaches, much worse fatigue, etc. Basically all the less severe side effects. This was a month ago, I called and they simply said to discontinue it and they'd "send labs" to check titers. I haven't received any labs and neither my calls nor emails have been returned. Lately I can't sleep, it's been 2 nights now without sleep and my brain feels like it's rotting. My ocd is much worse than it's ever been, I feel like I have no control at all over my mind. My bladder is really really bad and in urgent pain all the time. I still have a feeling of being "sick" more so than usual and differently than usual. Something is off but I have no idea what to do. I just received disability but no insurance so I don't have a PCP at the moment and no local doctor to help. I went to urgent care and they just gave me something for nausea. I feel as though I need a "new" pandas/pans doctor but I am much too ill to travel, my mother and I have to move and don't have the money. Any tips would be greatly appreciated in reference to any of the problems listed above. Lastly, I read Dr. najjar's article on auto-immunity + neuro-inflammation = psychiatric illness and I think it all definitely applies to me; in the past 10 years of being ill we've never been able to explore auto-immunity or approach any of that type of treatment. - Ophelia