***** I am not saying everyone has Lyme. This is MY story, and I hope so much it helps someone.
As I blew out my 30th birthday candles in 2007, I did not wish for health, as I was healthy (so I thought), and I didn’t realize life as I knew it could be lost at the blink of an eye. I was HAPPY: engaged to the love of my life, and after many years of hard work I had earned my PhD in Clinical Psychology. I figured the hardest part of my life (years of schooling) was behind me. I had so much to look forward to as I embarked on my 30s. That was the last candle that would be blown out without wishing with everything that I am that I would be healthy again and not have to suffer anymore. That would be the last birthday that I was able to smile, truly smile. My life as I knew it changed dramatically several months later in 2007. The next 6 years would be filled with nonstop suffering, nonstop doctor’s appointments, and nonstop searching for answers.
Symptoms: My first symptom was this torturous sensation of rocking when I walked. I felt as if I was on a boat that never docked! Accompanying this was an intense feeling of fatigue, as well as migraines.
Looking back, I wasn’t feeling at my best for about 1 and 1/2 years prior. My at most annual migraines progressed significantly to the point that I was having sometimes multiple migraines with aura per week, and headaches on other days. I also had bouts of feeling rundown for 6 months prior to my big downfall. However, this wasn’t chronic, and I went about my daily life.
As quickly as this 2007 bout of rocking and fatigue hit me, it came and went a few times until 2 months later when it NEVER left. I have NEVER been without this rocking sensation since. How I yearn for stillness. Unfortunately, as the years progressed, I only got sicker. My rocking became even more violent, and eventually was present when standing, then sitting, then even lying down. I am NEVER without it. I also experience a spinning sensation in my head. This is the hardest symptom to describe. Perhaps, I can illustrate it by making the analogy to having the inside of my head in a washing machine. Also, it is analogous to how one feels after spinning around and around. I have that sensation 24/7. The fatigue has worsened through the years. It is bone-crushing, and I feel flu like all the time. I continue to have head pain, and head pressure, as well as intermittent migraines. I have developed something I call “brain zaps,” where it feels like someone touched a nerve in my head. Again, a very difficult symptom to describe. It can be triggered by someone moving ever so slightly or changing the intonation of their voice. Sometimes it is spontaneous. Other symptoms include nausea, blurry vision at times, and extreme auditory/tactile/visual hypersensitivity. I went from being an, active, social woman to a prisoner in my own body and environment
Journey of what I think was misdiagnosis: When I became ill, I immediately saw a neurologist who ordered an MRI. I was told that it was negative, and my symptoms would go away. He did some routine labs. Furthermore, this neurologist remarked that I should be a football player, not a tennis player, as football players keep on playing when injured while tennis players get knocked down. He finally referred me to a neuro-otologist who did many vestibular tests. Again all was negative. The neuro-otologist suspected Migraine Associated Dizziness. An answer? maybe? I spoke to my neurologist who didn’t believe that was my diagnosis, but he had no alternative diagnosis, except to say this should go away.
Time passed, and I saw more neurologists, more neuro-otologists, and ten months after I became ill, I met with a neurologist who treats many cases of Migraine Associated Dizziness. He assured me this was my diagnosis and I had hope. I was so relieved. Through the years, I trialled over 15 migraine preventatives, including beta blockers, calcium channel blockers, anti-seizure medications, as well as antidepressants. I have always been extremely determined, so after each drug trial that failed, I fought on and tried the next one. NOTHING had worked adequately. The only improvement was a decrease in headache with aura, which was truly the least of my concerns.
I was even put in the hospital for one week to receive IV medications to try to break the migraine cycle that was causing all these symptoms. You see the irony in that. I will get more into that later.
As I was not getting well under the care of my New York physician, I got second opinions, third opinions, fourth opinions, etc, by top specialists around the country. I was either told that they had no idea what my diagnosis was, I had spontaneous Mal De Debarquement Syndrome which was incurable (even though I never even debarqued), or I had Migraine Associated Dizziness, also known as Vestibular Migraine or MAV for short. Well, the MAV diagnosis seemed like the best option. So, I continued on trying medication after medication.
As my life was slipping further and further away, I went to Duke where I was told that I could have a cerebral spinal fluid leak. I had repeated spinal taps while there, and 6 blood patches. No success!
6 years later: The first few years were brutal, but the last few years have been unlivable. The sensations are so violent. I do not get a second of peace. I cannot walk or stand without holding on. Accomplishing my own activities of daily living (e.g., dressing, eating, bathing) is brutal. I can only see my own husband and my darling sons, often times a few minutes at a time, as I am extremely hypersensitive to any movement, sound, touch, etc.
During Summer 2012 I began to reassess this diagnosis of Migraine Associated Dizziness. Could I have 24/7 chronic migraine for 6 years that had ripped my life apart? How could this be? What is that diagnosis? Why hasn’t any medication helped me? By this time, I connected with 100s of people around the world who were labeled as having MAV. Migraine can cause bone-crushing fatigue, night sweats, 24/7 violent dizziness, brain zaps, etc? Even though the literature supports this I thought something isn’t right. A once active, healthy, 30-year old, is now incapacitated at 36!
Lyme Disease: In the Summer of 2012, I met a lovely group of people on an online forum who were also diagnosed with MAV but were searching for another possible explanation for these symptoms. What resonated with me, was that these individuals all had some type of dizziness as well as other neurological symptoms typical of MAV. There was some overlap in symptoms, but many, many differences. Yet, we were all diagnosed with MAV and not getting better. We began to search for other possible explanations.
Lyme Disease became a topic of conversation among this group. I had been tested for Lyme Disease years prior, and was one of the lucky ones that didn’t only get the Elisa screening test, which misses the majority of cases. I went on and had the Western Blot which came back with one positive band. Through the years, something in me prompted me to bring my Lyme test result to each doctor I saw (and there were A LOT), and again and again I was told that one must have a certain number of bands to have Lyme Disease, and I do not have the typical presentation.
During the Fall 2012, I began to have more serious conversations with my husband about Lyme Disease. I should note that my husband is a physician, and moreover he wanted me well more than anyone in the world. But, he assured me based on his medical training that Lyme Disease was likely not my diagnosis, as I did not recall a rash, I wasn’t in the woods, I don’t have joint pain, and over 30 physicians said that I definitely do not have it. That quelled my anxiety for some time. But, as I researched more I began to learn that most don’t have a rash and you absolutely do not have to be in the woods to contract this awful disease, and joint pain doesn’t occur in many Lyme sufferers.
My husband began to do more research with me, and I pushed and pushed to do as much research as my sick head would allow. We learned that Lyme testing is grossly 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, one’s immune system 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. Most only receive a screening test called an Elisa, which comes out falsely negative the majority of the time. And, if someone is lucky enough to even get a Western Blot, most doctors are taught to follow Center of Disease Control (CDC) and Infectious Disease Society of America Guidelines (IDSA) which I personally believe are scientifically flawed and state that you must have a certain number of Lyme bands to be considered Lyme positive. There is luckily some more sensitive tests (e.g., Igenex) that have been developed, but even with those there are many false negatives. I learned that one only needs one lyme specific band to come up positive or even indeterminate to indicate that there was exposure to Lyme. Thus, adhering to CDC and IDSA guidelines (which most doctors are taught to do) may lead to missing a positive case.
In the beginning of 2013, I met with a Lyme expert, who is known as a “Lyme Literate Medical Doctor” or “LLMD.” I met with him for several hours, reviewing my entire history and lengthy medical file. I shared all my records including a Lyme test I received in 2008, which was sent to Stony Brook Laboratory. I was told at the time that I came up with one band, 41, and this is the test result that I brought around with me for 6 years. This LLMD 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. I learned that the CDC doesn’t require revealing the full test result unless it is specifically requested by the ordering doctor. The LLMD shared with me an article written way before 2008 about this band and why it is indicative of Lyme Disease. The article was entitled, “THe 93-Kilodalton Protein of Borrelia burgdorferi: an Immunodominant Protoplasmic Cylinder Antigen.” written by Benjamin Luft, et. al. For the first time in almost 6 years, I cried tears of hope and relief. Further testing through Igenex revealed that I have come up positive on other Lyme specific bands. Months later, I was also diagnosed as having coinfections, Babesia and Bartonella. I learned that many do not only have Lyme, and it is these coinfections which oftentimes make someone sicker than the Lyme itself. Little did I know the journey to health had only just begun.
Future: As difficult as it was to be diagnosed, learning about treatment options and making treatment decisions have been just as challenging. I decided to treat with aggressive antibiotics despite evidence to the contrary. I am also trying to build my immune system through supplements, detoxing, adhering to a Lyme-friendly diet, etc. I hope that one day I can write a happy ending to this story. I am fighting everyday for my life.
Update: 7/2013: I have completed 3 months of aggressive treatment focused heavily on my Babesia infection.
First months: As typical in Lyme treatment, you get worse before you get better as the bacteria is killed off. It was the hardest thing to continue to take all my pills everyday, watching myself get sicker and my body wither away and weaken further.
After three months of this aggressive treatment I have finally noticed some gains for the first time in 6 years! My rocking sensation is less violent, such that I can finally feel the ground. I have been walking around my house all week, as I am just in shock to not have violent rocking. I never knew what my own floor at home felt like if that makes sense. I can now feel the floor again! Brain zaps and blurry vision have significantly decreased. I have had some reduction in flu -like symptoms, and the spinning in my head slowly improving. I was even able to play with my children. I was not able to run around with them, of course, but be with them! and smile for the first time in years. Recovery from Lyme is a marathon and I have a long road ahead. It is also not linear. My worse symptoms, the vestibular ones, are far from gone. But, I am so grateful to have any improvement after 6 years.
Note from the Administrator: it’s important to realise that there is no evidence to suggest this individual was “misdiagnosed”. Though this story is written in a convincing tone, the person has stated clearly on the forum on a number of occasions that she has had migraine with aura for a very long time, long before the dizziness began. She also stated that one year ago that she had “severely low levels of hormones” reported to her by a reproductive endocrinologist. Nothing more was ever reported about that. It is more likely that her migraine condition has been either exacerbated by Lyme disease or she doesn’t have Lyme disease at all. There are a number of people here now who were given a Lyme dx only to find it was incorrect. Igenex testing is subject to cross reactivity and this individual’s earlier testing was found to be insignificant by reputable physicians. If there is another illness present, it is fundamental migraine 101 management to treat that illness otherwise it can make migraine management very difficult. Please see the Survival Guide.
We have a number of neurologists who have contributed to mvertigo all of whom agree that the symptoms of migraine variants such as VM can prove difficult to treat in cases where there are other concurrent infections/illnesses/hormonal imbalances occurring.
Dr. John Aucott: 2011 report from the SLICE prospective cohort and his Maryland studies. He indicated that 75% of patients with early Lyme disease will have the telltale skin lesion within the first 1-4 weeks of infection that lasts from days to weeks and expands in size. He emphasised that the classic description of a “bull’s eye rash” occurs only 20% of the time – it is not the most common manifestation of the Lyme rash. Rather, a uniformly red or reddish-blue rash, round or oval in shape, with sharply demarcated borders is most common. Most often the rash develops in places such as the knee, groin, or arm pit, occurring at prime tick season, such as the late spring and early summer. The rash is usually accompanied by fever, chills, and muscular pain in the neck and extremities; these rashes are not extremely painful. For a balanced view on Lyme disease please visit the Columbia University Medical Center website:
http://columbia-lyme.org/index.html
. The old brain still gets tired and am working less hours. If you can get back to physical functioning confidently is at least one devil conquered! Good luck!