Even with four people sharing the efforts that result in a monthly KosAbility meeting, sometimes we aren’t enough. This month is one of those times. KosA admins have lives and varied interests and deal with our own health issues that influence how we allocate our energies. So we are not hosting a meeting at the end of this month. But since May is Lyme disease, fibromyalgia, and chronic fatigue awareness month and I have Lyme disease, I’m taking a moment to honor MayDay.
Some of KosA admins’ other activities right now include healing with qigong (wilderness voice), publishing a sci-fi novel (CathyM), home remodeling (Steven Park), and riparian habitat restoration (Besame). KosAbility also relies on members to write a story for our meeting so if you are ready to share a story, get in touch.
May is Lyme disease awareness month, as well as other neuro-endocrine-immune disorders such as fibromyalgia (fm) and chronic fatigue syndrome (CFS). May 12th was chosen because it’s Florence Nightingale’s birthday and she is believed to have suffered with fm. New research is suggesting that neuroinflammation is a main problem underlying fm and perhaps also involved in CFS.
My troubling health issues began with a tick bite over 17 years ago that infected me with Lyme disease and a protozoan parasite that causes a disease similar to malaria (Babesia duncani). Other members of Daily Kos have Lyme and other tick-borne-diseases and have written about their experiences. Below, I link to some of these previous stories and to useful information on tick-borne-diseases off DK.
Lyme disease is a common (and increasing) epidemic that is sometimes easily treated and other times seemingly impossible to eradicate. I know people who were infected with Lyme but didn’t feel sick. They were treated and apparently had total recovery. I know people who were infected and extremely sick but recovered with treatment. And others, like me, were not diagnosed soon enough or not treated properly (or both) and we didn’t recover completely. People have died from Lyme and other TBDs, and an oncologist from Duke’s undiagnosed Lyme destroyed his heart. He is alive thanks to a heart transplant. Whether or not it is easily treated is strongly linked to how fast after infection treatment begins using the suitable antibiotic types, doses, and durations.
Treatment success also depends on what other diseases are acquired from the same tick (either the same individual or a different bite from the same type, black-legged tick AKA deer tick). There’s a long list of known co-infections such as Babesia, Erlichia/Anaplasmosis, and Powassan virus. Lyme and Babesia are spread congenitally. Babesia is a red-blood-cell parasite and if you have Babs you can’t donate blood as it can be acquired from a transfusion. A different species, Lone Star tick, is responsible for other diseases: Rocky Mountain spotted fever — that is more common in the SE US than the Rockies, and STARI. Read a DK member’s STARI story here.
Stories from Daily Kos members about Lyme include the following.
If asked to relate the four most important messages about Lyme disease I’d give to people who suspect Lyme (or who knew they were bit by a tick), reducing my nearly two decades of experience and study would be tough. I know I’d omit essential information that might spare someone an expensive life crash. But here are my best four messages right now although I had to lump several issues into each message.
- Ticks that carry Lyme and other tick-borne diseases exist throughout North America and beyond (high rates in Europe). Don’t be dismissed with the assertion “there’s no Lyme here” unless you are in Antarctica. The most infectious tick life stage is the nymph tick, the size of a poppy seed. → . . . . ← how many of those dots would you see on your body? It only takes one.
- The ELISA and Western Blot antibody level tests generally won’t give meaningful results until weeks after the bite (long after you should begin treatment). It takes at least a week or two for your body to produce the right antibodies in enough quantity to register on the lab tests. A negative ELISA is not confirmation of no infection and you shouldn’t just have the ELISA. Always get a Western Blot, too. However, a negative Western Blot isn’t the final no, either. This is because Lyme is immunosuppressive and your body may be handicapped in making enough antibodies to register on the lab test. Different labs report different antibodies and the best Western Blot (uses the most different strains of Lyme and reports the most antibodies) is Igenex. You can order an Igenex test kit yourself but to send it back and have it tested requires a doctor to sign the order.
- Doxycycline is the best first antibiotic to take if you know you were bit because it also helps manage some of the co-infections (not Babesia or Powassan virus though). Even before any lab test can provide useful information, taking doxy just in case is one of the few times that prophylactic antibiotic use is worthwhile. This is WAY better than getting sicker and needing a longer course of antibiotics, or living with Lyme forever.
Some people, including doctors, claim chronic Lyme does not exist. This is semantics and assumes that a person was properly treated with medications and that the disease didn’t last more than three months. If you aren’t treated soon enough (I didn’t begin antibiotics until 9 months post-bite) and if you can’t take the proper antibiotics (I’m allergic to them) you can have a chronic disease state.
I was bit in November 1999. By September 2000 when I was diagnosed, I was bedridden and my cognition was so trashed I couldn’t make sense of the caption to a magazine photo. I began antibiotics for Lyme in September 2000, for Babesia in 2002, and continued at intervals until 2009. But I never took the antibiotics known to be the most effective for Lyme (like doxy and Rocephin) due to allergies. I’ve recently had positive DNA tests for the Lyme disease organism (Borrelia burgdorferi). Those twisty devils are still in me 17.5 years later.
KOSABILITY IS A VOLUNTEER DIARIST COMMUNITY MEETING THE LAST SUNDAY OF EACH MONTH AT 4PM PT/7PM ET. WE EMBRACE PEOPLE LIVING WITH DISABILITIES, WHO LOVE SOMEONE WITH A DISABILITY, OR WHO WANT TO KNOW MORE ABOUT THE ISSUES. OUR USE OF "DISABILITY" INCLUDES TEMPORARY AS WELL AS PERMANENT HEALTH/MEDICAL CONDITIONS, AND SMALL, GNAWING PROBLEMS AS WELL AS MAJOR, LIFE-THREATENING ONES. OUR USE OF "LOVE SOMEONE" EXTENDS TO CHERISHED MEMBERS OF OTHER SPECIES. OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF THIS COMMUNITY. FEEL FREE TO COMMENT ON THE DIARY TOPIC, ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE, SHARE SOMETHING YOU'VE LEARNED, TELL BAD JOKES, POST PHOTOS, OR RAGE ABOUT YOUR SITUATION. IF YOU ARE INTERESTED IN CONTRIBUTING A DIARY, CONTACT BESAME, WILDERNESS VOICE, STEVEN PARK, OR CATHYM.
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