Nick on his experience in chronic Lyme groups:
I got better after I finally stopped trying different treatments and seeking something to “cure” me. Exercise alone helped me more than any treatment that costs money ever did in getting me my life back. The standard antibiotic treatment made me feel worse like I had the flu, but it was all I needed even though I often couldn’t remember my own name for months after treatment. The other treatments after were just a waste of money. My body just needed a couple of years to heal.
It also turns out my symptoms going untreated so long left me with a serious lifelong neurological sleep disorder that requires serious medication and is something no “Lyme-literate” physician ever would have noticed, and so I would have spent years unnecessarily disabled and suffering if I had continued to see a Lyme specialist instead of real doctors including a sleep specialist.
These are real possibilities for many of our post-treatment symptoms that people need to be exploring. I wish more people would take the route I did and continue to trust in science and medicine instead of insisting they have an incurable infection.
What makes it so everyone is so sure *they* have chronic Lyme and nobody wants to believe they are the person who actually has PTLDS instead, when even people like Stephen Buhner believe the majority of people have PTLDS or post-treatment symptoms rather than an incurable chronic infection?
I didn’t even know my own name for months after the 30 days of doxycycline treatment and guess what? I still kept getting better and better with time and got my life back. No magic potions required, no need for “Lyme-literate” doctors. It just took me two years, exercise, and maintaining a positive attitude and proactively managing my mental health. I have a diagnosis for most of my post-treatment symptoms that didn’t get better or disappear with time over the last two years. I’m doing so well, that several leaders in the local community want me to run for City Council against the vice-mayor this fall.
I would suggest people seek out a diagnosis or a way to manage the symptoms they have that do not improve with time, rather than wasting years of your life and your money searching for an elusive cure for a false diagnosis. I hope people consider the strong possibility that perhaps you are one of the many people who does have serious symptoms post-treatment (that can potentially be diagnosed and/or properly managed), but does not have a chronic infection that needs to be cured. I was diagnosed by two highly respected Lyme-literate physicians with chronic Lyme, RMSF, Babesia, and Bartonella at a time when I was actually already cured of RMSF… And I never even had Babesia or bartonella like I was told I did. Co-infections exist but are over-diagnosed within the Lyme community. There are many popular myths about them in these groups, so be skeptical of any diagnosis involving multiple co-infections or information you read on them.
Do not be afraid to question things. Just because something is popular opinion in the community does not make it true. Most of the things I was taught by the chronic Lyme community and by online groups later turned out to be false. I wouldn’t have had an opportunity to get my life back and would have remained permanently disabled had I listened to their advice instead of standing up to them and refusing to back down despite threats and intimidation that I would only get more sick if I didn’t follow their advice.
Even now people with Lyme *still* try to “educate” me (I find that funny) or intimidate me (not so funny) with insinuations that I “know” I am not actually better and how I don’t know that “it’s only going to get worse from here,” while accusing me of being “paranoid and ragey from the Lyme,” etc. Don’t tolerate people like that. That is not being supportive, that is textbook abusive behavior.
The only reason that I am not still disabled today and unable to support myself is because I stood up to the Lyme community and chose not to follow their advice despite constant personal attacks, threats I’d never get better, and other forms of intimidation. When people do what I did they need to be supported, and not attacked or driven out of the community like I and many others have been. Many people feel the same way I do but are too afraid to speak up for fear of losing friendships, or they just leave the Lyme community entirely because the constant abuse we receive for having different opinions and/or experiences isn’t worth it.