I wanted to write a quick update on my progression from being diagnosed with MAV to investigating other possibilities, which have included Lyme. I am hoping this will provide some useful information for people in the same position.
A very quick bit of background. I was diagnosed with MAV and fibromyalgia in 2011. My symptoms had some aspects of MAV (chronic head pressure, dizziness), but a bunch of others that didn’t fit. A rheumatologist told me he thought that diagnosis was ‘stupid’ and I had most likely got some post viral thing, since this all started with a flu, but he didn’t know what and didn’t think there was a resolution. He even said I could of had lyme at some point and this could be related to that, but that didn’t have a current infection.
So, I obviously decided to do what most people do and go get tests done at Igenex. Like most people (or at least it seems that way), my results came back positive. I traveled to the U.S.A to visit a doctor who diagnosed me with Lyme based on results and a clinical diagnosis. She prescribed me a bunch of antibiotics.
I am a pretty logical guy, I didn’t just jump into the antibiotics as I am extremely weary of taking them. Lyme is a really confusing and dark place. From what I can tell it’s filled with extremely dubious people who have come up with all manner of ways to take sick peoples money. Many people who have been diagnosed with Lyme are sick, have no idea why and are desperately looking for a solution. Selling them hope is easy. It’s actually heart breaking to read what some people are putting themselves through, with apparently no gains. I should note, my doctor (from my appointments so far), is really great. She has been a lot more informative than any other doctor I’ve spoken with and ordered a bunch of tests outside of the Lyme diagnosis, so I am not lumping her into that group.
Right now I still haven’t decided on if I am going to follow the Lyme protocol or not. When I am at my lowest, lying in bed, dizzy, it’s really tempting to reach for those pills. What have I got to lose? But I know that’s a tough path to go down. I’ve talked to people who have apparently been cured from Lyme with antiobiotics (people featured in newspaper articles, who I tracked down) and they are not cured. They seem to feel a bit better, but they tell me Lyme has become resistant against the drugs. Based on that, I am not sure what I would be signing up for, it seems like a lot of drugs, based on a result that my own doctors tell me isn’t trust worthy.
I’m afraid I don’t have any solutions, but wanted to give the perspective of someone who has been told he has Lyme, and struggling with that diagnosis. I can sympathise with people who jump in both feet. When you have a disease that is both undiagnosed and worsening, any hope is better than no hope at all. But I would also tell people to be cautious. Some of the Lyme protocols people sign themselves up for are really scary. IV drips etc etc, it’s hard to tell if they are going to improve you or make you a whole lot worse.
I hope this is helpful. Happy to answer any questions on this.