WELCOME TO THE SCHOOL OF LYME. 6 TIPS FOR THOSE NEWLY DIAGNOSED WITH LYME DISEASE.
by Jennifer Crystal
Every day, I receive emails from people who have recently been diagnosed with Lyme disease. As most of us do when we hear a new medical term or leave a doctor’s office, these people frantically search the web looking for information. Sometimes they come across one of my blog posts. Then they write with questions about treatment, with requests for finding a good doctor and with prayers that I will be able to offer them some hope. Most of all, they want to know: “What do I do to get better?”
Because I find myself offering the same responses to many such patients, I thought I would create a “School of Lyme For the Newly Diagnosed.” Consider this a brief survey course on tick-borne illness, open to anyone who wants to learn the basics of what to do when you get (or suspect) a Lyme diagnosis.
Lesson 1: It’s Lyme, not Lyme’s!
It’s important to know the correct name of your disease! Many people mistakenly call it Lyme’s disease, assuming it was discovered by a Dr. Lyme. In fact, Lyme is named for the town in which it was first detected: Lyme, Connecticut. As for the names of co-infections, those are not as simple, but should still be part of your working vocabulary; we’ll get to those in Lesson 5.
Lesson 2: All cases are different
Everyone’s looking for a one-size-fits-all treatment protocol. Unfortunately, that doesn’t exist, and here’s why: Lyme bacteria, called spirochetes, impact every victim differently. It depends how quickly the infection was caught and diagnosed; how far it’s spread, and to where. The bacteria can affect different organs, muscles, bones and cells in different patients. It can cross the blood-brain barrier and enter the central nervous system. Moreover, there may be co-infections present—the list goes on and on. A Lyme doctor can see a thousand patients and use a thousand different protocols. Telling you what antibiotics I took won’t help you; you need to work with your doctor to figure out the best combination for you.
Lesson 3: Find an LLMD
An LLMD is a Lyme Literate Medical Doctor. This is a physician who has trained with ILADS (The International Lyme and Associated Diseases Society). Some practitioners claiming to be Lyme literate may not be versed in all tick-borne disease. The best way to know you are getting good treatment is to make sure your doctor is ILADS-trained. You can find an ILADS-trained physician in your area through Global Lyme Alliance, by clicking on GLA.org/find.
Lesson 4: Get tested for co-infections
Unfortunately, ticks don’t only carry Lyme disease. Many of them harbor what are known as co-infections: other tick-borne diseases besides Lyme. The most common are babesiosis, ehrlichiosis, anaplasmosis, and bartonella, but there are many others. It’s critical that you get tested for co-infections along with Lyme disease. If you are receiving treatment for Lyme and haven’t been tested for other tick-borne infections, you may be fighting only half the battle.
Lesson 5: Take probiotics
Antibiotics kill spirochetes, but they also kill the good bacteria in your gut, which can cause a yeast infection. To combat this, take probiotics (available at any pharmacy or health food store). Important: make sure you take the probiotics at least two hours before or after you take the antibiotics; if you take them too close together, the antibiotics will kill the probiotics.
Lesson 6: Don’t panic
The information available at our fingertips in this internet age is a double-edged sword. You may read stories that terrify you. Remember, every case of Lyme disease is different. If you catch tick-borne illnesses and treat them immediately, chances are you will not suffer as long those who have been sick for many years. Don’t let my story or those of other chronically ill patients frighten you. Do let these stories offer you hope, however, especially if you have been sick for a long time. I am living proof that even the worst cases of tick-borne illness can eventually be wrestled into remission. I am living proof that long-term treatment works. I am living proof that it’s a long road between being bedridden and skiing, but it can be traveled.
Most importantly, know that you are not alone in this fight. There are many of us battling tick-borne diseases right alongside you. We feel your pain. We validate your suffering. And we know that it can get better. There is hope!
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock for which she is seeking representation. Contact her at:
- Lyme’s been around since the beginning of time: https://www.utoronto.ca/news/u-t-researchers-find-ancient-iceman-s-infection-helps-lyme-disease-bone-loss-discovery, and https://madisonarealymesupportgroup.com/2018/02/12/the-persistent-spiral-the-ancient-history-of-lyme-disease-and-tick-borne-infections/. Wisconsin has the first published case from Taylor County in 1969: https://www.ncbi.nlm.nih.gov/pubmed/5497158. https://www.publichealthalert.org/how-lyme-got-a-bad-rap—lyme-connecticut-that-is.html This article discusses how dermatologist Dr. Rudolf J. Scrimenti diagnosed the Borrelia infection and described both neurologic and arthritic symptoms exhibited by the patient. He took his knowledge & experience, and attempted to educate Dr. Steere, the person called to the scene of the Lyme, Connecticut “outbreak.” Excerpt: Scrimenti even corresponded with Steere and visited Yale to inform him of the long European history and strong possibility that the Lyme clusters were likely a form of Borreliosis. However, Steere, the rheumatologist-to-be had been summoned to investigate outbreaks of juvenile rheumatoid arthritis. After extensive study and consideration, guess what he concluded? He believed that he was observing a previously unrecognized form of JRA. And, we’ve been paying for it ever since.
- Doctor lists constantly change. The best way for you to find credible doctors is through your local support group. While organizations like Global Lyme Alliance are a place to start, they aren’t aware of changes that can occur quite rapidly. You can also ask people their experiences with various doctors, keeping in mind that people are going to have differing opinions.
- Testing for coinfections is abysmal. Most LLMD’s will diagnose and treat people clinically, which means, individually based on symptoms. Seronegativity is common with Lyme/MSIDS which just means you can test negative over and over and over yet be infected. I’ve found that getting a negative on a test can lead to a false sense of security. Also, treating this for many people is like peeling an onion. You start out with certain symptoms and then as you treat, other symptoms can rear their ugly little heads. For instance, we started treating for Lyme only to discover further down the road Babesia symptoms which needed addressing.
- Taking probiotics is a great place to start; however, as Dr. Burrascano states, “Now is the time for pristine health habits.” Eat a whole-food based diet and avoid junk food, soda, alcohol, and anything that could lower your immune system & cause inflammation: https://articles.mercola.com/lyme-disease/diet.aspx and https://www.tiredoflyme.com/diet.html. Many patients also find they are sensitive to many things and omitting dairy or gluten, for instance, can really help some patients. Being willing to try things is important as sometimes the only way we learn is by trying. Support groups are also good for this type of information. You will find people who are making their own bone broth, kefir/yogurt, kombucha, and have ideas for recipes that are healthy yet don’t taste like cardboard.
- Treating this is unlike anything else you’ve ever treated. Treatment is hard and costly. You feel far worse for a long time before you start feeling better. This is one of the hardest things to accept as a patient, but accept it you must. People are so relieved to finally be diagnosed that starting treatment is like a slap in the face. They expect to feel better but in fact, they feel worse. This is due to the herxheimer reaction: https://madisonarealymesupportgroup.com/2015/08/15/herxheimer-die-off-reaction-explained/. Also, once patients hit a plateau, LLMD’s switch the meds around typically bringing back the dreaded herx. You go up and down like the waves of the sea. You have many bad days and a few good. You have to learn to adjust your life around Lyme/MSIDS. It will sift you like wheat and you will find in the end you are made of much sterner stuff than you ever realized. For more: https://madisonarealymesupportgroup.com/2015/12/06/tips-for-newbies/
- The silver lining. After this you never take life for granted (or a day without pain!) and you become much more aware of and sympathetic of others. All in all, it makes you a better human and God knows, we need more of them!