Being diagnosed with Lyme disease can feel pretty overwhelming. I remember first coming across Lyme disease, and suspecting that I might have it, several years before I was diagnosed. I was so terrified of what it would mean if I had it, there are so many stories of medical neglect and abuse of patients with Lyme disease that I just didn’t want to go there.
But alas, ignorance really isn’t bliss in this case. Self-education is so important because from the moment you get diagnosed you really do need to be your own advocate.
Here are some resources for Lyme Disease. It’s important to note, though, that Lyme rarely comes in isolation, and most patients will also have other infections such as Bartonella, Babesia, Epstein-Barr or other reactivated viruses, so it’s worth self-educating about these things too.
- Lyme Disease UK website and facebook group
- Caudwell Lyme website. Set up my phones4u founder John Caudwell, who was affected by Lyme.
- Dr Dietrich Klinghardt is a well-known alternative doctor in the Lyme community, and his website has lots of useful information
- Dr Sarah Myhill is a UK doctor who specialises in ME/CFS. I wouldn’t consider her a Lyme specialist but she is certainly a chronic illness specialist, and thus many of her principles are highly relevant. Her website is here.
- Stephen Buhner is a herbalist with extensive experience in Lyme and coinfections. His basic protocols are available freely on his website, and he has books that provide huge amounts of information (see below).
- The Better Health Guy – a guy who healed himself from Lyme disease and mold illness, and now advocates and educates others.
- “Why Can’t I Get Better?” and “How Can I Get Better?” by Richard Horowitz
- “New paradigms in Lyme Disease treatment” by Connie Strasheim
- “Unlocking Lyme: Myths, Truths, and Practical Solutions for Chronic Lyme Disease” by William Rawls MD
- “Rising Above Lyme Disease: A Revolutionary, Holistic Approach to Managing and Reversing the Symptoms of Lyme Disease And Reclaiming Your Life” by Julia Greenspan
- “Suffered Long Enough: A Physician’s Journey of Overcoming Fibromyalgia, Chronic Fatigue, & Lyme” by William Rawls MD
- “Healing Lyme” by Stephen Buhner
- “Healing Lyme Disease Coinfections – Bartonella and Mycoplasms” by Stephen Buhner
- “Natural treatments for Lyme Disease coinfections – Anaplasma, Babesia and Ehrlichia” by Stephen Buhner
- “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard
Protocols or specific treatment plans
Generally speaking, you want to be working with a practitioner here. Your two main routes are antibiotic or naturopath/herbal/alternative. In reality though there are loads of different modalities that can help and this includes: brain retraining/neuroplasticity, nutrition, stress management, trauma release work, herbal medicine, acupuncture, and other supportive practices like yoga, meditation, breathwork etc.
I have created separate pages on the resources tab, for those resources that I believe have helped me the most.
I have become a huge fan of podcasts as a way of gaining information but also maintaining a sense of community and connection, which can be difficult when (a) you are housebound/bedbound or generally unable to engage with the world fully; and/or (b) you are living a life that is inherently “different” to those around you and thus connection feels difficult. Some of my favourite podcasts are:
- Lyme Ninja Radio – all things Lyme Disease, hosted by Mackay Rippey who is an acupuncturist and Lyme specialist in the US, and his daughter Aurora. Really fantastic content and Mackay truly understands chronic illness and the complexity of the path.
- The Better Health Guy podcast – hosted by The Better Health Guy, who himself healed from chronic Lyme and mold illness. His website is worth checking out too.
- The Wellness Crossing – hosted by Kami Lingren who healed from Lyme disease using a range of modalities but particularly DNRS, which is mentioned on my Brain Retraining page.
- The Doctor’s Farmacy – hosted by Dr Mark Hyman who is a well-known and respected functional medicine doctor. Not specific to Lyme disease or even chronic health issues per se, but rather all things health-related.
- Bulletproof Radio – hosted by Dave Asprey. Again, not specific to Lyme or chronic illness, although you will hear both of these things mentioned and will hear lots of advice relating to living your best self generally.
- Broken Brain – co-created by Dr Mark Hyman and hosted by Dhru Purohit. This podcast is a follow-up from the docuseries Broken Brain. Tagline “Heal your Body, Heal your Brain”.
Patient recovery stories
There is so much doom and gloom in the Lyme world, that it can be easy to wonder if anyone ever actually recovers from this thing. Well, they do, and focusing more energy on the healing stories rather than the sick stories can be a very helpful step:
- Website and blog produced by a patient who fully recovered from Lyme disease and has lots of helpful resources for patients https://realfoodrebel.com/
- Another great patient-led website by a lady who fully recovered: Layers of Lyme
- On Instagram I thoroughly recommend following @the.healed.tribe @kamichristina @hopehealcook …. there are loads of other great accounts I follow, I will update this page as and when I remember them!