For some of us it can take years of suffering and misdiagnosis before we receive a Lyme disease diagnosis, and others receive a Lyme diagnosis just weeks after becoming infected, but what then?
Each hospital and doctor’s office has its own methodology for treating infections. For years, most follow the guidelines set forth by the IDSA (Infectious Diseases Society of America), but are finding that there are many virulent strains that are not killed by the IDSA protocol (a few weeks of Doxy), so now more and more chronic cases appear throughout the country.
As this number continues to rise (along with those being diagnosed for the first time after years of suffering), well, we’re seeing a HUGE snowball effect on our worst nightmare. (But of course there’s no such thing as chronic Lyme disease… just hundreds of thousands of people who can’t deal with the aches and pains of everyday life, according to an infectious disease specialist, as if we’re all choosing to give up our vibrant, productive and pleasurable lives to live in dark rooms, bedridden in excruciating pain – that makes perfect sense…sorry, do I sound bitter?)
It doesn’t take most people long to realize they need a medical provider who understands Lyme disease and can treat it effectively. These doctors seem to be few and far between, forced to practice in secrecy for the most part due to the expensive lawsuits the IDSA has filed against Lyme specialists, NOT patients. These doctors try to practice under the radar except in those states that have passed laws that protect doctors from being sued for treating Lyme.
There was a time when you could get a recommendation from the Lyme Disease Foundation’s database of Lyme-literate doctors. However, they now encourage you to work with your primary care doctor and mail in a $10 processing fee just to get the name of a doctor in your area for a second opinion.
It’s natural that when faced with such a terrifying disease, victims wish for the best specialist, the best, in the hope that he will give them the best chance of full recovery. Well, it has always been true that wealth offers certain advantages; fly to India for a stem cell transplant if you can afford it, but even some of the big name Lyme doctors around here get $1000.00 for the first consultation. Treatment costs are above and beyond that and can easily range from $50,000 to $150,000 and more depending on the protocol and length of treatment.
I remember crying to my sister who had recommended an affordable homeopathic doctor who had supposedly cured two people of Lyme, “…how can I take a chance on someone with such little experience? I have no life! I’m a ghost! I They need a doctor who knows what they’re doing!”
Here I am, four years later, still struggling, MUCH better, but still a ghost asking the same question: “Which doctor should I go to?”
One of our community members emailed me about a chiropractor who was having great success curing Lyme in Pocatello, Idaho. So we need to keep an open mind and look for a doctor who shares our health care values and is actively educating themselves about new Lyme research, and someone who won’t give up on us.
The healing process can take a long time, so we need to consider geography and logistics as part of the full picture. I know from experience that traveling 5 hours each way once a month can be incredibly stressful and maybe totally unnecessary.
You wouldn’t get married after a date, so don’t choose your Lyme doctor after a visit (if possible). You may work together for a long time and need trust and respect and a lot of trust as you navigate what could be the scariest and most painful experience of your life.
