Assembling Your Healing Team: Thoughts on Choosing a Lyme Provider

In the Lyme-y world, you will hear “LLMD” used a lot. This simply refers to a “Lyme Literate MD,” or what I like to call a Lyme Literate Provider (because some are not specifically “MDs”). So when I refer to LLMD here, that’s what I’m meaning - a medical or naturopathic professional who is LITERATE in the Lyme and coinfection world. This is the type of provider I, and many others in the Lyme community, recommend seeking out for proper testing, treatment, and diagnostic care. 

NOT finding a trusted LLMD CAN lead to a run around of seeing a variety of providers who cannot/do not/are not equipped to help you. It can result in emotional and physical trauma, gaslighting, misdiagnoses, and more. And it can waste YEARS of your life. Ask me how I know. ;)

So no, your PCP, or family doc, or nurse practitioner friend, or homeopathist, or what have you may NOT know how to help you, may NOT believe in or know how to test for or treat late-stage or chronic Lyme and coinfections, and may NEVER have learned about it in their training. 

Let me stop here to clearly say - NOT ALL LYME PROVIDERS/LLMDs ARE CREATED EQUAL. I am in NO way claiming that a LLMD “title” means a provider is going to follow best practices or truly be knowledgeable to the degree you’d like them to be in regards to treatment, healing, testing needed, etc. 

In saying this, I want to assure you that your research and discernment are VALUABLE tools for you to be using and trusting. 

And this blog post is designed to help you ask those pertinent questions when choosing a LLMD for yourself or a loved one. I truly hope it helps you on this difficult journey. 

The following are some questions I would ask of a LLMD before booking an appointment or consult with him/her. It’s almost like an interview process, as I believe your providers work for YOU, and therefore should be compatible with you and your individual needs, goals, and desired outcomes. 

1. Where did you get your training in Lyme and coinfections? What is your primary background (what type of specialty)?
   You may want to verify a reputable training source and possibly even background prior to Lyme training if necessary.

2. How many patients have you treated for Lyme/coinfections? (Or how many years in practice? Or similar question.)
   Consider high numbers here possibly better results. Experience often does matter, but is at least worth considering.

3. What type of testing and/or lab work do you use for diagnosing? Do you test for coinfections? If so, which ones? 
   Testing for Lyme is notoriously unreliable. However there are some tests/labs out there that are considered BETTER standards than others. Igenex, MDL, and Galaxy labs are some of those. 

4. Do you take insurance, and if so, which ones (or any that you don’t take)? If out of pocket costs, what are they and how much? 
   This is all useful information to know up front, as paying out of pocket can be pricey. I recommend not putting out money for treatment until you're sure you know that the treatment you are getting is one you agree with and can stand behind.

5. What type(s) of treatments or protocols do you use? Do you use antibiotics, herbals, or both?
   There are MANY schools of thought when it comes to treatment for Lyme and coinfections. The decision of how to treat is largely personal, so you really want to make sure your goals and desires align with your provider. Regardless, multiple approaches for treating Lyme is what is typically recommended (vs just one agent whether herbal or antibiotic).

6. How do you manage herxing (Herxheimer Reactions)? How do you help guide patients through detoxing?
   Herxing happens to some patients and is REAL and potentially even dangerous if not properly managed. A good provider will consider how to best advise you in the event of a herx reaction, and will manage your treatment accordingly. 

7. How do you manage and treat Lyme/coinfection symptoms that may be systemic or impacting specific body systems? Do you refer to specialists if needed, and if so, who? And are THEY also Lyme literate/knowledgeable?
   I think it is helpful to know what you will be getting into SHOULD Lyme or coinfections impact body systems severely or atypically. In other words, if you develop cardiac issues (or ANY organ issues) due to Lyme, how would your LLMD handle that and would that have a referral source for you should that be necessary?  

Now, though I've given some brief reasons behind each of these questions, many of these questions don't necessarily have a “right” or “wrong” answer(s). In fact, YOU get to decide what answers are acceptable to you, but these questions really should be at least some of those asked and considered before picking a provider to help you navigate your healing journey. 

Unsure where to even START finding a LLMD?? Check out www.ilads.org or www.lymedisease.org to search for providers. Again, use this list of questions and your discernment to help guide you as well. Providers in these databases are not necessarily endorsed by these organizations at this time. Different providers will hold different beliefs and practice differently, so you need to be sure you’re finding one that aligns with YOU and your goals/needs/beliefs. 

What do you think? What other questions would you add?? What do you feel like are the best answers to these questions? Please feel free to comment!

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