Authored by Jodi WM, H411 staff
Lyme Disease - What you need to know
Please note that like all other information in Hashimotos 411, this is a patient-to-patient document. I will footnote sources of information where applicable, but a fair bit of knowledge I have learned from my own doctor and experience will be included as well.
What is Lyme?
Lyme is a tick borne illness (TBI) name for the disease caused by the borrelia burgdorferi bacteria. There are over 300 different known strains of borrelia burgdorferi in the world (footnote 1).
However, Lyme rarely comes alone. The overwhelming majority of people infected with borrelia burgdorferi will also be infection with at least one other coinfection. Bartonella and Babesia are ones you may be familiar with, but there are numerous others (footnote 2).
*FOR PURPOSES OF OUR DISCUSSION HERE, “LYME” WILL REFER TO BORRELIA BURGDORFERI AND/OR COINFECTIONS.”
Lyme is most commonly known as an acute illness that occurs within 2 weeks of a tick bite and comes with a distinctive bullseye rash and high fever. Lyme, in its acute presentation, is typically treated with a 21-28 course of antibiotics.
It was once believed (and unfortunately still is believed by many) that if there was no acute presentation of Lyme then there was no transmission of disease from the tick. And it was also once believed (and still is by many) that the 28 day course of doxycycline cured the illness. (More discussion of these issues below.)
1. Lyme can only be transmitted by deer ticks. (footnote 3)
2. Lyme is only transmitted in endemic areas. (footnote 4)
3. A tick must be attached for 48-72 hours to transmit Lyme. (footnote 5)
4. If you have Lyme, you will have the acute presentation of Lyme (fever and rash). (footnote 6)
5. A 3-4 week course of doxycycline will cure Lyme. (footnote 7)
6. You can accurately test for Lyme. (More on this under the diagnosis section). (footnote 8)
7. There is no such thing as chronic/persistent/late-stage Lyme disease. (footnote 9 and footnote 10)
1. Lyme mimics many other illnesses and most people will have had several misdiagnosis before being diagnosed with Lyme. (footnote 11)
2. LYME IS THE FASTEST GROWING BACTERIAL ILLNESS IN THE UNITED STATES. (footnote 12)
There symptoms of Lyme vary from person to person. (For example, I personally had many more of the neurological symptoms than the musculoskeletal symptoms.) This list should not be considered comprehensive, but includes the most common symptoms: fatigue, joint pain, twitching, cognitive impairment, cardiac problems, neuropathy, headaches/migraines, muscle aches, memory loss, sleep impairment, gastrointestinal problems, psychiatric problems (depression, anxiety, mood swings, etc), numbness and tingling.
How Lyme triggers Autoimmune Conditions:
We know that Lyme pathogens have proinflammatory immunomodulatory effects on the body (footnote 13). Lyme proteins are very similar to proteins found in the body’s own tissue (footnote 14). In the process of waging a long and chronic battle with Lyme, other “safe” tissue (such as the thyroid) can get attacked as well. Lyme can be a root cause of numerous autoimmune diseases.
How Lyme is Diagnosed:
There is no accurate test for Lyme. There are lots of tests that may show exposure, but Lyme is a very tricky and difficult thing to test for. And it has been shown that Lyme can exist in the tissue (specifically around the heart and brain), and be serologically negative (footnote 15).
LYME IS A CLINICAL DIAGNOSIS (footnote 16). It can be made based on your medical history, symptoms, and if you have had any exposure to ticks. There are many (MANY) various ways to test for Lyme. But none of them are perfect, and even the CDC’s own standard was never intended to be for diagnostic purposes: “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis. (footnote 17)”
It sounds bizarre to say - but if you have tested positive to any exposure to Lyme (on any of the numerous tests available), you are considered “lucky” - you don’t have to fight for a diagnosis.
If you are testing negative for Lyme, but still concerned you may have it, Lyme can be properly diagnosed by LLMDs (more on those in the treatment section below).
How Lyme is Treated:
If you have gotten this far, and have a positive Lyme diagnosis, take a deep breath. There are as many opinions on the proper way to treat Lyme as there are doctors who treat it.
*IT IS EXTREMELY IMPORTANT TO WORK WITH A LYME LITERATE MEDICAL DOCTOR (LLMD) FOR YOUR SPECIFIC TREATMENT PLAN.* (The only thing I would really suggest that anyone do on their own - which will not treat Lyme - but will begin to calm some of the unnecessary inflammation in the body is to adopt an AIP lifestyle. Clean diet was one of the first things my doctor recommended and it’s been a constant in my protocol since the beginning.)
LLMDs base their treatment on the most up to date findings in microbiology, they understand the complexities of how Lyme disrupts other systems in the body, and they understand coinfections.
You can search for a LLMD here: http://ilads.org/ilads_media/physician-referral/ or https://www.lymedisease.org/find-lyme-literate-doctors/
My LLMD takes a multi-tiered approach to treating Lyme.
We know that Lyme can be difficult (bordering on impossible) to eradicate (footnote 18). We also know from the diagnosis section above that it’s really impossible to accurately test for the presence of Lyme. Because of these two things, my doctor does not view the goal of Lyme treatment to completely eradicate all infected Lyme cells in the body. You could spend years trying to do that and never be successful. Not to mention that aggressive “Lyme attack” protocols are usually very heavy handed with long term and high dose antibiotics - which have their own side effects and risks.
So if my LLMD doesn’t want to fully eradicate every trace of Lyme in my body, what does he want to do? 1) He wants to eradicate as much Lyme as he can with “a light touch.” 2) He wants to detoxify the body. 3) He wants to clear inflammation from the body. 4) He wants to calm and normalize the immune system.
He finds that he has good success getting his patients to a place where they can live symptom free of Lyme disease without needing to attack Lyme with a heavy hand.
This is just my doctor’s approach. There are LLMDs that are much heavier handed with killing Lyme. Your LLMD should be willing to work with you, based on your symptoms and your actual coinfections to work on a plan that is right *for you.* However you may need to look around and interview several doctors if you are wanting a heavier handed approach or a more holistic approach - not all LLMDs offer both.
Please note, many patients who have used long term high dose antibiotics are still sick. KILLING LYME *DOES NOT* REPAIR THE BODY. You must repair the body. In my ongoing personal research I am finding that the most progressive doctors in the LLMD world are starting to focus *a lot* more time on healing the body and *a lot less* time on killing Lyme itself.
*IMPORTANT TREATMENT NOTES: At some point you will likely come across lyme protocols/recommendations that contradict the other diet and health advice you see given in Hashimotos 411. Some examples that come to mind: stevia, juice cleansing, fasting - I’m sure there are plenty of others. Lyme is a very complex disease to treat and all of these subjects should be discussed with your personal LLMD - who can balance out the pros and cons for your *overall* health. As a group, Hashimotos 411 only encourages things that are known to benefit gut health, known to reduce inflammation, known to support adrenals, etc. Lyme treatment sometimes requires deviation.
Other considerations (Mold, EBV, CIRS, etc.):
Because Lyme often goes undetected/undiagnosed in the body for years, Lyme frequently does not exist in a vacuum. We have already discussed autoimmunity as part of the collateral damage that comes with Lyme, but there are other conditions that are common with long term Lyme infection. I won’t go into many details here on reactivated EBV, Chronic Inflammatory Response Syndrome, or mold exposure - as I’m not extremely well versed in any of them. But I will say that Lyme is known to either contribute to all of these problems or make them worse. When the immune system is hyped up and overtaxed, the body becomes much more susceptible to many problems. It is not at all uncommon for people who are treated for Lyme to need to be treated for other underlying chronic conditions as well in order to begin to heal. Your LLMD should be well versed on chronic conditions that are often seen along side Lyme. If your LLMD is not well versed outside the world of Lyme and you are not getting better, you may need to employ a functional medicine doctor along side your LLMD to ensure you are looking at the entire picture.