How to Find the Right Doctor for Lyme Disease

Finding the right doctor to treat your Lyme Disease is a serious problem and question.

The short answer is that you need a Lyme literate Doctor.

What is that?  That's a doctor that understands Lyme Disease and knows how to treat it.

It makes perfect sense when you think about it, but if you've never heard of a Lyme literate doctor how would you know you need one?  We live in a society where we think Doctors know everything.  Of course, we know there are specialists for really specific things, but we sort of think that our normal doctor can diagnose us and send us to a specialist.  Or at least know when to send us to a specialist.

Lyme gets a little bit more complex.  Lyme literate doctors are sort of specialists in Lyme.  But they aren't viewed or described that way.  Your normal doctor may completely overlook your symptoms or be unable to diagnose you with Lyme.  Some doctors don't believe in "post-treatment Lyme disease" or "chronic Lyme disease".  

You essentially have to be your own advocate.  If you're not better and the treatment isn't working you have to be vocal, tell the doctor, find a new one when your doctor or treatment isn't working.  It's all a lot of hard work, but you have to be a firm advocate for yourself or you won't get better.

But it can all be very overwhelming where do you start?

I don't have all the answers, and I won't pretend I do.  But I was struggling to find Lyme literate doctors in my area.  I looked on different websites, I searched for all kinds of doctors.  I didn't like the way most of the doctors I found sounded, that is, the philosophies they believed in. 

So I kept looking.  My previous doctor is just not an expert in Lyme.  He's a great doctor and I'm grateful that he thought to test for it and we diagnosed it before years of misery passed.  But we hit the limitation of his knowledge on how to treat Lyme.  He started to say things like "well, maybe you don't have Lyme and I think you need to see a specialist in arthritis."  That wasn't the answer I needed, I needed someone to treat the Lyme disease I have, or to help figure out if I have a co-infection that came with Lyme that I need to treat.  So I kept looking.

Email ILADS (the International Lyme and Associated Diseases Society)

One option is to email ILADS (the International Lyme and Associated Diseases Society) for a list of Lyme literate doctors in your area.  I emailed them at the following email address:

contact@ilads.org

I made the mistake of only asking for Lyme literate doctors in San Diego.  I should have asked for a list of a broader area or several different areas.  But it was a starting place.

They also sent the following information:

Then it's a question of essentially interviewing the doctors.  Call all of them, ask if they treat Lyme and all related diseases, ask if they treat until the symptoms are gone and anything else you've had trouble with before.  Ask them if they treat symptoms regardless of whether you get positive test results back.  (Not that testing isn't a wonderful tool, but Lyme Disease and its common co-infections are notoriously difficult to test for and you need someone to work with your symptoms, not rely solely on tests.)  If they don't believe in post treatment Lyme and that's what you're dealing with, don't go to them.  Keep asking questions until you find one that's willing to work with you, to keep digging, and more importantly to keep treating you until the symptoms are gone!

Lists of Lyme Literate Doctors

LymeDisease.org has a list of Lyme Literate Physicians.  There are a few other sites that I know of that have lists.  I haven't tried looking at other lists but I know this website has a list.  You do have to sign up for an account to get the list.  But you can create a FREE account that will give you access to the list of Lyme Literate Doctors (or LLD).  

I found Dr. #3, who I have high hopes for on this list.  I also found the people recommended by ILADS on this list.  The particular doctors recommended to me by ILADS weren't accepting new patients when I tried calling.  But Dr. #3 was on this list and seems to be wonderful.  So this is an option if you get stuck and overwhelmed.  At least it's a list to give you a place to start.  

It's your health and it's your life.  Don't settle.  Keep looking until you find the right one.  

Keep fighting.

For Other Posts about Lyme Disease see the following:

How Did I Get Lyme Disease?

So, I have Lyme Disease

Lyme Disease a List of Symptoms

Lyme Disease the Great Masquerader of Diseases

A Doctor who Listens, Hallelujah!

How Did I Get Lyme Disease?

Ok, so Lyme Disease to the best of my knowledge is transmitted only by tick bites.  But I never found a tick on my body, so how did I get Lyme Disease?

My story, or at least my best guess as to how I got Lyme Disease is this:

In December of 2018 I went to Rhode Island to visit my family.  While there I went to a cute little store in an outbuilding on someone's farm.  I wandered around and then went outside to look at all the animals.  They had donkeys, lamas, goats, chickens and an adorable farm dog.  

Well, I played with the farm dog and petted him.  And I'm fairly certain that this is where I got a tick bite and became infected with Lyme Disease and possibly other co-infections.  

Why do I say that?  

While I never found a tick or had a ring rash around a bite, I came home from this trip and start having flu-like symptoms a few weeks later.  I felt like I was constantly on the verge of coming down with the flu, but I never did.  My muscles ached, I had headaches, and I sort of expected to have the flu at any moment for about a month or maybe two.  But I also explained away the headaches and muscle aches as barometric pressure swings, or because I'd been doing something that made me sore and stiff.  

It wasn't until my hands started aching like I had suddenly developed arthritis that I knew something was really wrong.  This happened sometime around Feb-March of 2019.  I finally went into a doctor and we started the process of figuring out what was wrong.  

It took from March until October, after running tests for auto-immune diseases, and every arthritis test imaginable to end up thinking about testing for Lyme Disease.  Don't get me wrong I'm grateful he thought of it at all or I'd still not know what was wrong.  

Unfortunately we are a long way from done.  I'm waiting on test results from new blood tests to see if I have co-infections that I'm fighting too.  I wish it were sooner rather than later, but I'm still fighting. 

Do you have Lyme Disease?  How long did it take you to diagnose it?  

For Other Posts about Lyme Disease see the following:

How to Find the Right Doctor for Lyme Disease 

Lyme Disease a List of Symptoms

So, I have Lyme Disease

I Feel Like I'm Playing Lyme Roulette.

So, I have Lyme Disease

Ok, it's time that I start talking about a thing I'm constantly dealing with.  

I have Lyme Disease.

It's not that I'm ashamed to say it, or anything.  I sort of keep it to myself in most contexts because it seems inappropriate to just walk up to people and start talking about how miserable your body feels all the time.  Not least because of fear of covid-19 and the fact that I'm immuno-compromised because of Lyme Disease.  Even if we weren't living in a pandemic it seems wrong to just answer every "how are you?" with "Pretty miserable, thanks for asking."  But it is nonetheless true.  And it is something, like it or not, that is part of my ongoing reality.  So, I think it's finally time to start talking about it.

I don't have any illusions that I'm going to really make a difference for anyone with my discussion or posts of Lyme.  But, one of the things that I deal with currently is "brain fog" or confusion and memory troubles.  I try to laugh it off.  I'm just being extra "lymey" today I jokingly laugh at myself.  What other option do I have?  But it may in fact be helpful for me to write about it here as a sort of Lyme Journal.  Perhaps it'll help me keep track of more of my symptoms and if it helps anyone, that's great.   

If you don't want to read about Lyme Disease, I get it.  I'm sorry this topic isn't as random, and fun, as most of my other posts.  I will keep writing random and fun posts, but these Lyme posts are going to start figuring into my writing too.  Skip them over if you're not into it.  Ok, that said, here we go:

I have Lyme Disease.

I was finally diagnosed with Lyme Disease in October 2019. 

(I had several slight positives in several bands of the IGeneX Lyme test. - note it's not enough for the CDC to consider me a Lyme patient, but it's enough for several doctors to take it seriously and perhaps more importantly to begin treatment.)

Because it's hard to ever be certain you have Lyme Disease and not something else, I can't say too much for a certainty.  I have been diagnosed with Lyme, but it could be another infection or any number of other things.  I've been tested for mold poisoning, auto-immune diseases and arthritis (I don't have it and yet my hands are arthritic).  With the help of not one but two doctors, I am currently operating under the assumption that I have Lyme Disease and possibly another co-infection that we are still doing testing to identify.  Nonetheless, I will tell you the facts as I currently know them.  I'll amend anything as we go along and find out more.

So, I was diagnosed with Lyme in October of 2019.

But I have had Lyme Disease since December of 2018.  

It took nearly a year to find out what was wrong with me, and now it has been almost a year and I'm still fighting.  I still feel miserable.  So, in roughly six weeks I'll have been dealing with this for two years.  While I am hopeful that the most recent tests will give me a better path forward, I'm just tired of dealing with Lyme.  Mainly because it's a nightmare.

A multi-year nightmare.

I am lucky that I don't have it as severely as some people and I recognize that.  But I am really not well, and the thing with Lyme is that nobody really knows what is going on with Lyme disease, not science, not doctors, there are competing philosophies on Chronic Lyme disease and whether it even exists.  Even your friends and family, they don't really understand, or sympathize in some cases.  You don't look sick to them, so they don't know how bad it is for you.  

Anyway, I don't want to go on today.  I just wanted to make a start.  If you have Lyme Disease or a co-infection, or anything like it, I'm terribly sorry.  If you want to share your story with me, successes, or tearful tales, I'm here.  

Other Lyme Disease Posts:

How to Find the Right Doctor for Lyme Disease

How can you be Certain you have LYME DISEASE?

Lyme Disease a List of Symptoms

Lyme Disease the Great Masquerader of Diseases

How Did I Get Lyme Disease?

Memory Struggles with Lyme

I Feel Like I'm Playing Lyme Roulette

Let's Put Lyme Disease in Perspective with Covid-19

Lyme with a side of Babesia

Do I have Lyme Disease or West Nile Virus? or a Co-infection?