I had a great lecture at the Common Ground Fair yesterday on living with Chronic Lyme. It was packed, and I kept talking with people for an hour after the lecture ended. But the person I wish I could have talked to was the young woman who got up ten minutes into the talk declaring, “I’m sorry, I know all this, and I feel like I’m dying right now.” She left, and I wanted to thank her.
Thank you, stranger in pain, for reminding me of the desperate need we have for answers. I wish you had stayed, because I shared a few. But my talk wasn’t meant to cure your pain, just to give you more tools to look at how to treat it with your caregivers.
Thank you for reminding me that what I do matters, that those in pain want answers now, and that sometimes ten minutes is too long to wait. I’ll work on making it clear what to expect at the outset, on making it clear what I can and cannot do, so that before you sit down you know what to expect.
I want to thank those who stayed with me as I went through giving the outline of what it means to live in a state where we will be infected and reinfected with Lyme. We are not alone, and our healthcare system can’t meet our needs. But we can meet that system halfway, by knowing what we need and how to ask for it.
For those of you who missed the lecture, I posted the questions on a separate post.
If you, like the young woman, know every question, you have my admiration, and my condolences, because far too much of your life has been spent working on the puzzle that is Chronic Lyme. Thank you for not giving up on yourself when others likely have.
For those who don’t know all the answers, I promised I’d post them here.
- Before it was called Lyme, Since at least 1909 it was called: erythema chronica migrans (ECM) )
- The first person to get Lyme was probably: Ötzi the iceman
- You know you have Lyme if the following is true: five + genetic markers -CD
- The difference between ILADS and the CDC is: if Chronic Lyme exists AND how you get it/testing
- The best information we have on Chronic Lyme is: Doxycycline can help
- Lyme co-infections are: scary as heck And found in the Caribbean and China
- Antibiotic resistance in Lyme: is found in the round and spore forms And has been around since 1992 AND is scary as heck
- You can get Lyme from: three ticks AND possibly mites, biting flies, mosquitoes, sex, pregnancy, and urine
- Lyme autoimmunity: overlaps RA AND can be triggered by OspA AND continues even if a person is clean at a cell level of Lyme
- The Jarius-Herxheimer reaction, which includes stroke as a possible side effect, is from: antibiotics or mercury treatment for Syphilis AND is immune TNF.
- Going on the internet to research Lyme: leaves you poorer AND puts your health in the hands of trolls AND is good for a laugh
- Lyme sufferers in chat rooms: love a good JHR
- Cell wall deficient forms of Lyme are: not unique to Lyme AND weaker than persisters.
- Stephen Buhner and Dr. Rawls: don’t agree.
- Desbio homeopathics for Lyme can cause heart palpitations.
- Babesia represents _50%_ of Chronic Lyme patients.
- In the Netherlands _one in sixty people____ bitten developed a rash.
- In Norway out of 8000 people who got bitten: 300 people had more than a rash AND 80 needed more care AND 2x more than what you’d expect were older women.
- What do stevia, anise, and Disulfuram (Antabuse) have in common? They kill Lyme.
- Where can you get my books?
How’d you do? If you need more information, refer to question 20. And to the young woman who walked out, I’d love to know what you were hoping I’d be able to give you in the lecture that wasn’t there. Please email me at email@example.com. Thanks!