I wanted to update everyone about my recent diagnosis of Lyme Disease. I was ambivalent about posting, as I got some backlash about trying hormone therapy a few months ago. I completely, though, understood where that backlash was coming from and I didn’t want to engage in a back and forth debate. I am way too sick for that. I also got an outpouring of kind, compassionate, messages, and I appreciated them very much. I hope that when you read my story you can put yourself in the shoes of someone that has been told they have MAV for almost 6 years, and has tried a plethora of migraine preventives to no avail. Trust me, if I was not bedridden or got well on any of these drugs, I wouldn’t be searching for another answer. However, as my life slips away, I had no choice but to search beyond the MAV diagnosis. I am in no way implying that others do not have MAV, but if even one person can relate to my story, writing this will be well worth it.
Firstly, wanted to explain my story. I became ill in 2007. My first symptoms were a sensation of rocking when I walked, severe, unrelenting, exhaustion, and migraines. Through the years these symptoms of rocking and exhaustion have worsened, and I have numerous other symptoms. I went from being a fully-functioning, active, clinical psychologist, to being essentially bedridden. My current symptoms consist of rocking when walking, standing, recently even when sitting down, and lying down. I am unable to walk without the assistance of a walker when I leave the home (which is rare – mostly for doctor’s appts) and must hold on to anything and everything when standing and walking when at home. My exhaustion has worsened and is particularly horrendous in the morning when I awake, feeling as if I was up all night drinking (which, of course, I wasn’t). I also feel extremely flu like and hypersensitive to visual/auditory/tactile stimuli. Other symptoms consist of brain zaps, crippling, spinning feeling inside my head, nausea, occasional blurriness, among other symptoms. I was told for 5+ years that I have MAV. I have trialed probably close to 15 medications. These were not quick trials. I have stuck through numerous drugs to therapeutic doses. Some trials took over a year to complete. Not one drug has helped me in the slightest. Only Nortriptyline and Verapamil had improved my migraines with aura, but no other symptoms were helped.
After trying bioidentical hormone therapy, which unfortunately and not surprisingly didn’t work this past fall, I began to look into Lyme. I do not regret having tried bioidentical hormone therapy as that was the path I needed to take to get what I believe is my true diagnosis. I was told in the early days by one doctor that I have lyme and I should be treated based on a blood test completed. However, I showed those results to neurologist after neurologist who said I did not have lyme, as they were using strict CDC criteria. I began to educate myself, watch the documentary, “Under Your Skin,” and read as much as my sick head would allow me to. I now know that very few see a tick, and a small percentage have a subsequent rash. I lived in one of the most endemic regions for lyme when I got sick, New York. I live in Connecticut now which is no better. But, again, I thought, well I wasn’t in the woods, so I couldn’t have gotten lyme. But, this is not true at all. You do not have to be in the woods. It can even happen in New York City in Central Park. Looking back I wasn’t perfect before the dizziness hit in 2007. I felt flu like on and off, 6 months prior, and had increasing migraines for over 1 year. Prior to that time, I was extremely healthy!
This has been a very eye opening, yet scary past few months. I also found out that lyme testing is largely inaccurate. Lyme testing doesn’t directly test for lyme. It tests for one’s immune response (antibodies) to lyme. So, even early on, testing doesn’t always come up positive, even if someone does have Lyme. Also, as someone is sicker longer, their immune systems become weaker, making it sometimes even harder to have a positive result. In addition, lyme is sneaky and hides in the cells; thus, it is very hard for the body to detect it. There is luckily some more sensitive tests (Igenex, etc) that have been developed, but even with those there are many false negatives. It is quite scary to think of possibly being diagnosed based on clinical symptoms. I know it was for me. I spent a lot of time researching Lyme Literate Medical Doctors, and have been diagnosed with Lyme. I met with a doctor who has been treating lyme patients for over 30 years and advocating for them. I shared all my records with him. In 2008, I was given a lyme test which was sent to Stony Brook Laboratory. I came up with one band, 41. This doctor told me that half of my test results were missing. He contacted Stony Brook, and it was revealed that I was positive on a specific band (93), and he explained to me that this band is highly indicative of lyme disease. He shared with me an article written way before 2008 about this band and why it is indicative of Lyme Disease. Also explains the two bands I have are indicative of lyme. Should anyone be interested in the research the article was written in 1992, and called “THe 93-Kilodalton Protein of Borrelia burgdorferi: an Immunodominant Protoplasmic Cylinder Antigen.” written by Benjamin Luft, et. al.
I am sorry this is long winded. But, wanted to share my story. Again, I am in no way implying that everyone has lyme disease. However, if others have been sick and have tried numerous drugs, such as myself, and nothing has worked, I strongly feel like it’s at least worth looking into. I know this is going to be a long, long, journey for me. I am terrified of the road ahead as lyme treatment is not easy, especially when one is so sick for this long. There is so much to learn. Again, I hope I am not scaring anyone and am not saying that everyone shares my story.
I just hope we all find our answers and get well! We all deserve to live again!