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non-lyme doctor

How to Be an Advocate with Your Non-Lyme Doctor

by Jennifer Crystal

Here are 10 tips to most effectively work with your non-Lyme doctor

 

Finding a good Lyme Literate Medical Doctor (LLMD) is hard enough. (If you’re having trouble finding one, GLA can help. But what do you do if you’ve found one and need to see another doctor for an ailment unrelated to Lyme? How do you talk to your primary care physician who may not understand the complexities of tick-borne diseases? How much of your tick-borne illness do you need to share with your dermatologist, gynecologist, or dentist?

Patients often ask me these questions, so I’ve put together some tips on how to be your own best advocate with a non-Lyme doctor.

1. Do your research

When searching for a new doctor, especially a primary care physician (PCP), find out how much they knows about tick-borne illnesses and whether they comply with ILADS treatment guidelines. The last thing you want is for a new PCP to give you a misinformed lecture on how you should or should not be treating an illness (or multiple illnesses) that are already under the care of a good LLMD specialist. Instead, you want a PCP who’s willing to talk with your specialist and give them final say on all facets of your Lyme treatment. Does the PCP understand how acute infections affect tick-borne illnesses, and vice-versa? Call to ask these questions beforehand, or bring a list of them for your first appointment.

2. Offer information politely

If your PCP is not yet Lyme literate, ask politely if they would be willing to learn a bit more on your behalf, so that you can work together to make the best decisions for your health. You don’t want to bombard your PCP with information, or make them feel like you’re telling them how to do their job. Instead, you’re kindly asking to create a partnership in which you both together make informed decisions. In addition to speaking with your LLMD, ask if your PCP would be willing to read the Global Lyme Alliance or ILADS websites. You may wish to bring in a couple blog posts or articles that you believe speak to your own experience.

3. Be prepared

Remember that most doctors have only fifteen minutes of allotted in their schedules to see you. Before your visit, think about what you really need them to learn about your case of Lyme disease. Instead of telling your whole story, what are the key points that will help this particular doctor treat you? The PCP may need to know about treatment plans, length of illness, or specific symptoms. Or, they may only need to be made aware of your larger health issues. For example, when I visit the dentist, I remind him that I have Lyme and babesia (a tick-borne co-infection), tell him what medications I’m currently on, and ask before he does any procedures how my illnesses and their treatments might be affected by his dentistry.

4. Bring a list of current medications

Have a list of all medications, supplements, and vitamins that you’re currently taking, including dosages, written out. Include any dietary restrictions, allergies, and adjunct therapies you are undergoing. List the names and phone numbers of your other practitioners (i.e. your LLMD, your physical therapist, etc.). This will make the appointment go much faster, and you won’t have to rely on memory when the doctor asks about your medications. The doctor can keep this list in your file for easy reference. I always keep a copy in my purse, too, and an e-copy on my phone.

5. Speak up

Despite having your medical list on file, a specialist who isn’t focused on the fact that you have one or more tick-borne illnesses may not think about it when they’re treating an acute issue. For example, if you go to a dermatologist for acne, they may suggest putting you on antibiotics, without realizing that you’re already taking them for Lyme. Ask questions such as, “How would taking any additional medications affect my current Lyme treatment, since I’m already on antibiotics for Lyme? Is there another way we can treat my acne?”

6. Always check with your LLMD

Before starting any new treatment recommended by another doctor, say, “I just want to check with my LLMD to make sure he or she doesn’t have any concerns about this treatment in relation to my Lyme disease. Can I follow up with you tomorrow?” If you’re in an emergency situation when there isn’t time to check with your LLMD, make sure the doctor treating you is aware of your larger health issues and medications.

7. Designate a quarterback

If you work with many practitioners, like I do, see if one of them would be willing to serve as “quarterback” of the team, facilitating conversations so all of your practitioners are on the same page. This type of leadership—and unity—is hard to come by in today’s medical world, because insurance companies can’t be billed for the extra time doctors might take to talk to each other, and doctors’ schedules are usually overbooked. The right doctor will want to make the extra effort for you to ensure that you’re getting efficient, effective care. The quarterback doesn’t need to be your LLMD or PCP; it just has to be someone knowledgeable about your case. For me, it was my neurofeedback practitioner. He coordinated conversations with my LLMD, PCP, talk therapist, and physical therapist.

8. Bring someone along

It’s easy to get overwhelmed during a doctor’s appointment. You might miss something they say, or you might forget to speak up about a particular issue. A good idea is to bring someone you trust to act as your ears and scribe. My step-mother comes with me to my LLMD appointments. She takes notes on everything the doctor says, and helps asks me to ask questions. It’s also good to write out a list of questions/concerns before your appointment, so you don’t forget to bring them up.

9. Be confident and firm

Declare your Lyme diagnosis as fact, not a question. Do not allow a doctor who isn’t a Lyme specialist to ask, “Are you sure you have Lyme?” or “How do you know you have Lyme and not something else?” Simply say, “That diagnosis has been confirmed by a Lyme specialist, who oversees that treatment. I’m here today to talk about X…”

10. It’s your body, always remember that

At the end of the day, you have final say over your care. No doctor has that power over you. So be polite but firm. Ask questions. Take time to consider the treatments options presented to you. Talk them over with another trusted practitioner or friends. If you are not comfortable with a treatment, it’s okay to say so. And if you are not comfortable with a doctor, it’s okay to find a new one!


jennifer crystal_2Opinions 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: [email protected]

What’s Luck Got to Do with Lyme Disease?

by Jennifer Crystal

For many Lyme disease patients, luck starts with getting an accurate diagnosis.

 

Whenever someone hears my story and says, “Wow, you’ve really been through the wringer,” I respond, “Yes, it was a long haul, but I feel really lucky.”

Eight years of misdiagnosis, three years in bed, one year on intravenous antibiotics, and countless missed life events doesn’t seem so lucky, but that’s not how I look at it now. I’m lucky that I was diagnosed at all. I’m lucky that I fell in the hands of a good Lyme-literate doctor (LLMD) and got treatment. I’m lucky that I lived in a state where insurance covered that treatment.

So much of Lyme disease is just luck, good and bad.

My medical trajectory started with the bad luck of being bitten by a tick. I was in the back woods of Maine. I wasn’t focused on prevention and wasn’t wearing bug repellent, and I definitely didn’t know to check for ticks. These are factors I could have better controlled, which might have kept that original tick away from me. Then again, I have lots of friends who spent similar summers in those woods, who were similarly careless, who were never bitten by a tick. So even if I had been more careful, my being bitten may have just been bad luck. The fact that my tick also delivered three co-infections in addition to Lyme was even worse luck.

Recognizing the role luck plays in Lyme disease lets us off the hook a little. I’m not saying we shouldn’t be vigilant; anyone who spends time outdoors must be. We need to take the best care of ourselves we can. We need to follow the protocols our doctors give us. When those treatments don’t work, or when we aren’t comfortable with our doctors, we need to do something about it: we need to find new physicians, or work with our practitioners to try different mixtures of medications. We need to figure out what lifestyle changes we can implement and adjunct therapies we can try to best improve our health. We need to do everything in our power to get an accurate diagnosis, to get proper treatment, and to fight for what we need.

And then we have to let go and realize, like to stoics, that the rest of it is out of our control. The rest of it is up to luck.

Patients who get an early accurate diagnosis are lucky. Patients who respond well to treatment are lucky. But all of us have some bad luck along the way. Some of the antibiotics I tried didn’t work, or had side effects I couldn’t tolerate. One made me so nauseous I spent a week running to the bathroom. Another caused gallstones so big that I had to have emergency surgery. It took a long time to find the right “cocktail” of medications, and even then, I had bad patches. I still have them, especially when I change a medication or hit a stressful period in my life.

But still, I am getting better. So in the larger picture, I consider myself lucky.

The most important thing is to get an accurate diagnosis, and the best way to do that is to see an LLMD. Patients write to me all the time with questions and fears, wondering if they’ll ever get better. If I read that they’re already seeing a Lyme specialist I breathe a sigh of relief. I know they are in good hands, and the best I can do is wish them good luck on their journey.

If you need help finding an LLMD, please click here. Then know that no matter how hard the road has been, no matter how hard it might be, luck is likely on your side.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]