TRUSTED RESOURCES FOR LYME DISEASE, CHRONIC LYME, CO-INFECTIONS AND RELATED CONDITIONS
Updated: Oct 15
Whether you are newly diagnosed, living with chronic Lyme and co-infections, or have been in the community for a while, here is an easy list of the places I trust most.
A quick-view graphic with the key points is at the bottom of this post.
RISE ABOVE LYME
Rise Above Lyme includes several Facebook support groups, where thousands of members share support, hope and what has helped them, plus my website with its blog and directory.
The directory covers 500+ topics that come up in our community. It's focused on education about Lyme, chronic Lyme, co-infections and the other conditions so many of us face, like mold illness, MCAS, POTS, EBV and other viruses, heavy metals, candida, gut issues and detox, along with the many solutions people use for symptom relief. You name it, it's in the directory. If it comes up in this community, you'll most likely find a blog post to help you learn about it. I update my posts throughout the year as new research comes out, so check back often and look for the "Updated" date at the top of each post.
LYMEDISEASE.ORG
In their words, they serve "the patient community through advocacy, education and research."
(Research: they run MyLymeData, a patient-powered research project that tracks patients' diagnosis and treatment experiences over time.)
GLOBAL LYME ALLIANCE
Their mission, in their words: "Cure Lyme and other tick-borne diseases through innovative research, awareness, and empowering the patient voice."
(Research they've funded includes work at Columbia, Johns Hopkins, Harvard Medical School, Northeastern, Tufts, Tulane, UC San Francisco, University of Pennsylvania, Texas A&M and more.)
BAY AREA LYME FOUNDATION
In their words: "Our mission is to make Lyme disease easy to diagnose and simple to cure."
(Scientists featured on their research page include researchers at Stanford, Harvard, UC San Francisco, Johns Hopkins, Tulane, Tufts and Columbia.)
ILADS
A nonprofit medical society that, in their words, is "dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases."
(Research: their Leading Research page highlights work from Johns Hopkins and Tulane.)
RESEARCH I FOLLOW
These two research centers are featured often by ILADS and LymeDisease.org.
TULANE UNIVERSITY: Dr. Monica Embers, Director of Vector-Borne Disease Research at Tulane, studies whether antibiotics fully clear Lyme, new treatments to clear the infection, and better ways to test for it.
JOHNS HOPKINS LYME DISEASE RESEARCH CENTER: In their words, their mission is "to bridge the gaps in Lyme disease knowledge and translate our research findings into improved patient care."
OTHER DOCTORS I LEARN FROM
Dr. Richard Horowitz has written books on Lyme and chronic illness that I recommend.
I've learned a lot from the top respected doctors in the country. The good news is that ILADS, LymeDisease.org, Global Lyme Alliance and Bay Area Lyme Foundation often share information from these doctors, so those organizations are usually all you need. You never need a certain brand to heal, and your doctor can help you decide what's right for you.
A NOTE ABOUT WHO TO TRUST
Over the years, many people have asked me to share their treatments, products and stories. I'm very careful about what I pass along.
There are some podcasts and organizations I've chosen not to list here. I've seen some of their stories mislead members, who took a story as proof that a treatment was safe or that it worked.
I'm this careful because I was that patient. I was desperate and willing to try anything to heal, so I understand that mindset. If I allow a misleading story into our community, I hold myself responsible. We're all adults who make our own choices, but I still feel a duty to protect the people I support.
Even the resources I trust sometimes share stories about new treatments. It isn't always easy to see the intentions behind a story, so I can't promise everything they share is right for you. Before you try anything new, take your time, look into it and talk with your doctor.
HOW I SHARE INFORMATION
I share helpful information from respected Lyme-literate doctors, because I believe good information can change lives.
Sharing a doctor's information doesn't mean my groups are open for marketing. Some doctors and clinics train coaches or representatives to join support groups and look for clients. I didn't create Rise Above Lyme to be anyone's marketing platform. It's a safe place for patients to find support, hope, honest information and solutions for symptom relief, so they can have a better quality of life while they heal.
So I may recommend a doctor's article, book or advice and still not allow that doctor, their coaches or their clinic to promote or recruit in my groups. That keeps the focus on you and your healing, not on someone's sales.
ABOUT FIND RELIEF
Find Relief is the one exception I've made: it's the only product I share that I have a business connection to. It was formulated by Dr. Thoring, my doctor of 13 years. I know firsthand how much this formula has helped me, so of course I want to share it with the community I care about. Simply put, I believe in him, I love his products and I take them every day. Not sharing them wouldn't make sense, and my connection to him doesn't change that.
This exception doesn't open the door to other products. A doctor or company making a product, even a good one, isn't a reason for me to promote it. I only share what I know well and believe in, the same way I've shared information and hundreds of products that have helped me and our members over the 10 years Rise Above Lyme has existed. Buying anything is always your choice.
WHAT RISE ABOVE LYME CAN PROMISE
I stand by you, because I'm a patient too. I'm here to protect you and keep you informed, with one goal: to help reduce your suffering so you can heal in whatever way you choose. I'll give you hope along the way.
I'll never allow mean people, or anyone who tries to take advantage of our vulnerabilities, into our groups. If they do get in, they'll be removed as soon as we see who they are. Compassionate behavior isn't a choice here. It's an expectation.
- Honest feedback. Reach out to me through my website, and I'll share what I know.
You deserve the truth.
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
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