If you are new to Lyme disease, you are probably wondering what in the world is an LLMD? An LLMD is a Lyme Literate Medical Doctor. This is a term used for doctors that are currently educated in the proper clinical diagnosis and treatment of Lyme disease, despite the limitations set out by the 2006 IDSA Guidelines. The term Lyme Literate can be applied before any medical designation or specialist. For example: ND (Naturopathic Doctor), DO (Doctor of Osteopathy), Cardiologists, Neurologists, Optometrists, etc. They can be equally qualified in their specialty and are often interchangeably referred to as LLMDs in discussion.
These are doctors who have made it their life to help those of us suffering from Lyme disease and who have been denied proper treatment by our general practitioners, specialists, and in many cases Insurance companies. It is a thankless job with a lot of risk. Unfortunately, due to this risk, most of them do not accept medical insurance and can be quite costly. They also tend to have long wait times.
Sadly, many of them are targeted and prosecuted as using improper methods, regardless of clinical evidence and patients advocating on their behalf. One of the most heart wrenching cases, the story of Dr. Charles Ray Jones and his struggles is particularly saddening given all that he has done for countless suffering and sick children. He is the best model for an LLMD that you can get.
At the same time, due to the controversy and incomplete understanding of the disease, there are also some that claim to be LLMDs and Lyme experts that are taking advantage of the sick and desperate. If you go to any doctor, Infectious Disease doctor, LLMD, specialist, or “expert” for Lyme disease diagnosis and treatment and they tell you that they know all there is to know about it or that their treatment protocol is “the one” or that they have “the cure” do not waste your time with them. Personally, I would run screaming, and I certainly would not give them my money. It is a big red flag that they are not who they appear to be.
Be very careful and pro-active about researching who you trust your life and your treatment to. Be sure that they are a licensed physician and that they are qualified to diagnose and treat this disease.
Hopefully, your treating physician will be knowledgeable enough to help you so you do not have to go through this process. As time goes on, I hold out hope that the medical community in general will become more educated and supportive of the truth behind this disease. It is up to us as patients and survivors to educate them and open their eyes to it.
If you decide to seek out an LLMD, consider only those that are recommended by trusted sites, such as those I listed. I do not provide LLMD information, as there are already Lyme sites that keep this information up to date and are much more informed than I am on this. If you have questions on how to contact these sites, please feel free to contact me, and I will do my best to direct you to the right place.
If you are experiencing financial hardship, and are concerned you cannot afford an LLMD since most do not accept insurance, please go to the Support page for more information on funding and financial assistance.
The Importance of Treating all Forms of Lyme, Co-infections, and Secondary Infections
Part of the reason it is crucial to find a Lyme Literate Practitioner is due to the complexity and diversity of Lyme disease. It is crucial to properly diagnose Lyme, all possible co-infections and any underlying conditions or secondary infections. ALL aspects need to be treated along with immune support, detoxification, nutrition, mental health, etc.
In addition to the complexity of diagnosis, it is imperative that all forms of the Lyme spirochete are targeted. It is currently up for debate whether there are 3 forms, or if 2 of them are the same form. You can learn more about the Lyme Spirochete and how it works if you would like.
To summarize: the spirochete, or cork-screw form, is the basic form. It can change into a cell-wall deficient or L-form, in which some antibiotics are ineffective. It can also encyst and hide where the body cannot recognize it and antibiotics are ineffective. Due to the constant changing of forms, several different types of antibiotics, usually rotated, are needed to break up the cysts, and kill all forms.
There is also a biofilm layer which is produced by all pathogens in long-term infection. This creates a type of protective barrier and allows the pathogens to communicate. This also needs to be addressed during treatment. There are so many different aspects and scenarios that could be present in the Lyme patient. It is impossible to list them all here. However, if all aspects are not addressed, relapse is common and usually more difficult to treat.
You can see the importance of having a doctor that understands the complexity of the disease; is supportive throughout the process; and looks at each unique individual and treats them accordingly.
What to expect from your first appointment
Many people ask what to expect from their first appointment. Whether you see an LLMD or another Lyme Literate physician that is willing to treat, each doctor is different. Go to your first appointment prepared. Use the symptoms checklists that I provided and take it with you. Write down all of your questions, concerns, and thoughts ahead of time. If you have any lab reports, take copies with you (I started making a habit of asking for copies of lab reports from the requesting physician).
Your doctor should spend at least 45-60 minutes with you. They should be attentive, they should listen, and they should answer your questions. All of them. At the same time, be willing to listen and to do as you are instructed.
This could, and often does, turn into a long term relationship with your doctor, so make sure you like them and you trust them. Listen to your gut. It’s always a good idea to get a second opinion. Or a third.
Here is a very helpful document written by two fellow Lyme patients:
The Patient/Doctor Relationship
One of the most important things in successful Lyme Treatment is finding a doctor that you can trust and have a good relationship with. And that is what it should be, a relationship. It should not be a one-sided conversation. There should be open discussion, with room for questions. While it is important to “comply” with your treatment protocol, you should not blindly follow your doctor’s orders without understanding what the treatment and medications are. Even LLMDs do not know everything and can make mistakes.
It is so incredibly important to be your own advocate and educate yourself about everything associated with this disease. Don’t be afraid to ask your doctor questions. Don’t be afraid to speak up if your gut tells you that what he/she is saying is not right, or you are not comfortable with it. This allows the doctor to better understand your history, what is currently going on with you, and treat YOU….not just a regular “protocol.” Take charge of your body and advocate for your health!
Because Lyme disease affects everyone so differently, and because everyone’s body is so unique, treatment protocols MUST be customized to the individual. There is no one size fits all treatment. Some people are more sensitive to pharmaceuticals and/or herbs than others. Some have allergies. Everyone’s metabolism is different, so one person may need a higher dose than the next to achieve sufficient blood levels of the medication. There really is no “right” or “wrong” protocol. Just YOUR protocol.
Your doctor should be telling you what every drug, herb, or therapeutic support that they are prescribing is for, why they think you need it, and what the dangers and potential risks are. They should also tell you what to expect to experience from any new changes to your protocol. If they don’t tell you, then ask.
On the other hand, it is equally important to tell your doctor everything that YOU are doing. This includes supplements, allergy meds, therapeutic support, exercise, and even recreational drugs. This is not only so that they understand what other things may be contributing to your symptoms, but also so that they don’t prescribe something that will interact with something else you are taking or doing.
If you ever have concern about a possible reaction to a medication, you should be able to contact your doctor with your concerns. Do not ever stop taking a drug abruptly without discussing it with your doctor, as this can also have side effects. If you cannot get ahold of your doctor, call your pharmacist if you suspect an allergic reaction. And if all else fails go to Urgent Care or the ER.
This disease is rarely “cured” or resolved quickly unless it is a new infection, is caught early, and treated appropriately. It usually takes months or years. So, it is really important to make sure that you are comfortable with your doctor and that they are available for you. Especially with this disease, there are so many symptoms that may or may not be life threatening, you NEED to have a way to contact your doctor in between appointments.
If a doctor is not willing to do that or to discuss your treatment and medications, then I would seriously consider finding another doctor. There are good and bad LLMDs just like any other doctor or specialty trade. There are plenty of good ones out there. Find someone that you feel you can develop an open and trusting long-term relationship with.
Special thanks to Michael Parent for providing so much valuable information to the Lyme Community. Keep doing what you do.
LLMD=Lyme Literate Medical Doctor
LLND=Lyme Literate Naturopathic Doctor