I am posting a qualified success story after nearly four years of dizziness, vertigo and other neurological symptoms. I should perhaps mention now that Scott knows that I am posting here since this is in part a story about Lyme. I start my story in October of 2011, because that’s when I started noticing that I was having periods of dizziness. That’s also when I started to keep track of my symptoms, which included dizziness, vertigo, problems with my balance, headaches with stomach aches, tinnitus, rashes, tingling or burning hands and feet, neck pain, some swelling joints, brain fog, and memory issues.
I saw lots of doctors, was in the ER several times, in the hospital a few times. I was originally treated for MAV last October. I started Topamax and had trouble with the side effects. I very slowly made it to 62.5 mg, which was the most I was ever able to handle. The Topamax helped some with the visual vertigo, but I continued to get worsening symptoms, especially confusion. I knew that my confusion and memory loss were not normal. I would get lost in my neighborhood, I forgot people I knew, I couldn’t make sense of maps, I couldn’t make lists, at one point I had “left neglect” - I partially ignored input from my left side (for instance, I couldn’t read the numbers on the left side of a clock). I was exhausted from trying to think.
As my symptoms worsened, I did another round of testing in April, which included the IGENEX Lyme test. I tested positive and started treatment under an Infectious Disease doctor who specializes in tick-borne disease, not because I was sure I had Lyme, but because no one had any other treatment ideas for me and the doctors I consulted pretty much said “why not?”. I started with oral antibiotics in May and then did daily iv infusions in July and early August. My health is exponentially better now than it has been in at least a year. My head is clear. I feel like I have been given my life back.
I am weaning off of the Topamax, which in retrospect, probably was not a good choice for me since I was prone to confusion, and confusion can be a side effect. I started my Lyme treatment on a dose of 50mg to help with the headache side effects. I am now down to 37.5 and hope to be completely off of Topamax in 6 weeks. It has been easier to titrate down than up.
I realize my journey isn’t over. Recovery is a process. It took almost 4 years to get as sick as I was. If Lyme caused most of my symptoms (or in the case of the headaches, exacerbated them), I have only had one round of treatment and it is not unusual to need more. I have only felt this well for about a month, but on the other hand, I have felt this well for about a month!
I’m not interested in re-telling the details of my story (though will share privately with others who might want to know more about Lyme), nor do I want to stir up any debate. I do, however, sincerely want people who come to the forum to see Lyme disease as one possible cause of their symptoms to be considered and ruled out or rejected.
I have now personally met many people who have Lyme (or other tick-borne illness) whose primary symptoms included confusion, dizziness and migraines. It wasn’t until I saw the discussion at mvertigo that I thought to be tested. I will always be thankful to Scott for setting up the forum, for the vast amount of migraine information here, and for pointing me in the direction of testing for Lyme.
May we all be well!
Mary Lee