I probably caught Lyme in Fontenelle Forest, near Omaha Nebraska, some time in 2006. I was relentlessly healthy and fought it off until I got dangerously dehydrated hiking in the Sandias in 2007.
I stumbled off that mountain in early June. I was at home in my old bedroom a month later, disoriented and unable to remain awake for more than two hours. I closed my business in September, unable to perform even basic tasks.
I returned to work at the beginning of 2009, was pronounced disease free in the summer of 2010, and now, four short years after being stricken, I am well, whole, and dealing with the normal things one faces in their mid forties.
Given our healthcare system in general and how we handle Lyme in particular I could just as easily be pushing up daisies right now.
May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us all month in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
Lyme, a tick borne disease, is actually a cluster of pathogens. The Borrelia burgdorferi common in the U.S. is often found with Bartonella, a protozoan called Babesia, and other nasties.
The Missouri specialist who finally finished the job for me says he suspects that Tularemia, or rabbit fever, has exchanged genes with other bacteria found in ticks and can now exist as a long term, low intensity infection. This may be what I had, but the situation is muddled: I was blessed with a second bite four days after I received my initial diagnosis. This produced the bullseye rash and I had a 105F fever when I started antibiotics – the classic Herxheimer reaction to massive bacterial die off.
Others are going to talk about dealing with being sick. What I really want to discuss is the harder part – determining when you’re well, and rebuilding your body and your life.
If you take a lot of antibiotics over a long time you harm your digestive system. Maddeningly, the symptoms from this mimic Lyme. I believe that a significant number of patients are being over-treated. The science behind the ten day course of Doxycycline recommended by the Infectious Disease Society of America is an insurance company funded crock, but from my own experience I believe I was done with harmful bacteria and suffering more from the lack of proper bacteria in my digestive track for at least a couple of months near the end.
If you’re a Lyme victim and IF you can find a good specialist you will still need to pay VERY close attention to your health. The bacteria were gone, but I didn’t feel right until I spent three months on hormone replacement therapy, and one things were working again I got off that and on to a round of vitamins and supplements.
Each person is different, but as a rule victims should assume they need a probiotic. I really like VSL3, which is a solid cure for IBS and other stuff, as well as being good for overall digestion. Vitamins are a must, particularly magnesium due to the adrenal stress all Lyme patients face. Avoid magnesium oxide and find a more expensive glycinate. I experienced a dramatic change when I went on Krebs Chelates, a carefully crafted mineral supplement that makes it from digestive tract to blood stream even when you’re not working 100%.
I personally had very good luck with SAM-e for joint pain and overall mood. Fully half of getting better is having the confidence that you will be well again. This supplement is a potent anti-depressant, improving mood within a day or two, and it’s used in Europe to treat nearly 50% of all depression. Read the instructions – it can be a wild ride if you’re at all prone to mania.
I could go on about the different things I’ve done and tried, but you really need to find a functional medicine practitioner. You can just Google your geographic area and that key phrase. They are around, but be prepared to drive a bit – the one I am seeing is an hour away.
The treatment of Lyme requires aggressive, long term antibiotics and a focus on digestion, mood, joint pain, and cognitive function during the treatment phase. Half of recovering from Lyme is having the strength to get through each day while the antibiotics are doing their work.
America needs doctors and patients working together to determine the best solution for this cluster of emerging diseases. Insurance company profit motives only make the situation worse, just as they did with HIV a generation ago. This time there’s no foundation for a moral argument against treating those who become ill due to a love of America’s outdoors … but there definitely is a moral angle to a Congress that continues to sell out our best interests to a parasitic insurance sector.