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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: lymewarriorjennifercrystal@gmail.com

The Aches and Pains of Tick-Borne Illnesses

by Jennifer Crystal

The first time I saw the award-winning Lyme documentary Under Our Skin, I was seated in the theater. In the film, a doctor who doesn’t believe in chronic Lyme was asked what might otherwise be causing the symptoms of the more than 427,000 people afflicted by tick-borne illness every year. He suggested it could just be the normal aches and pains of getting older.

With that bit of ignorance so baldly stated, everyone in the theater let out a collective groan.

There is a big difference between the aches and pains that come with tick-borne illnesses and those associated with every day life.

To be fair, those who haven’t wrestled with tick-borne illnesses might be confused by the generic descriptor “aches and pains.” That’s because it’s like so many other nebulous descriptions,—like “fatigue”—that could be the result of any number of illnesses. Let me explain.

In my former athletic life, I was a hard-core skier. In college I skied almost every winter day, and after I graduated and moved to Colorado, I skied every Saturday and Sunday from November to April. Often my muscles were sore after these workouts. Sometimes I’d even wake up with an aching back, but only because I’d worked my arms too hard the day before. These aches and pains were akin to those anyone might feel after working out at the gym, going for a run, or weeding the garden. The muscles get overworked, and you feel residual soreness.

Unless this type of soreness is indicative of a larger injury, it usually can be alleviated with gentle stretching, rest, ice and ibuprofen. Generally, the soreness dissipates within a few days, and you can continue with daily life—sometimes even exercising moderately—while these aches and pains heal. They are a nuisance but they’re not debilitating.

The same is true for what I know of the aches and pains of getting older. Granted, I am only 41, so I can’t speak yet to the pain my older readers feel when their bones start to complain or they develop arthritis. For me, the aches and pains of getting older mean that my knees creak when I crouch down to talk to a child. My back twinges more than it used to when I pick up a heavy bag or box and I’m more susceptible to a pulled muscle. When I fall down skiing, the bruises hurt a little more, I’m having more soreness the next day than when I was younger, and I tend to need more ibuprofen.

These aches and pains are tolerable. I might complain about them to a friend, but then I go on with my day. These pains don’t have me bedridden for months or years. They aren’t all over my entire body, just at the stressed joints. They don’t make me feel like I have a perpetual flu.

The aches and pains of Lyme disease do cover the entire body. When you have Lyme, you feel like your whole body is weighed down with a thick coating of molasses. It takes a slow, exhausting effort to lift your limbs. Your joints ache not in a post-work-out way, but in a way that feels like that molasses is pooling in your elbows, knees and toes. I’ve often felt a pulling sensation in these areas, like someone was gripping and yanking at my joints.

And the pain was not only in my joints. Because Lyme is a systemic inflammatory infection, I felt aches and pains all over my body. Think about how your ankle swells when you twist it badly. That’s because of inflammation. Now imagine that type of inflammation all over your entire body. That’s Lyme disease.

Different Lyme patients feel pain in different areas, depending where the Lyme bacteria (spirochetes) are gathered, and depending on which areas the infection has spread to. Some have migraine headaches. Some Lyme sufferers have back and neck pain that makes it hard to move. My worst aches were in my forearms and shins. I felt a deep pain in those bones, which would bruise to the touch. Returning to the molasses analogy, sometimes my forearms felt so weighted down that I could not type. I could hand write one sentence and then had to lie down.

These aches and pains went on for months, until antibiotics and prescription anti-inflammatory medication killed enough Lyme bacteria that the molasses feeling blissfully dissipated. The pain could not have been alleviated with ibuprofen or ice, because it was the result of a bacterial infection that was deep in my body. It wasn’t just a nuisance; it made daily life impossible.

Now, when I get “normal” aches and pains—when I’m sore from skiing, or my calves hurt from walking around the city in bad shoes, I know it’s not Lyme-related, because it’s not as deep or painful. It goes away on its own in a few days. When I less frequently feel a pulling sensation in my joints, shins or forearms, or when I can actually feel the spirochetes buzzing under the skin in those areas,–when I put my hands on my skin, I can feel a buzzing underneath, like electricity–then I know it’s a Lyme-related problem.

If only Lyme patients could show others what’s inside—if only we could demonstrate our infection the way we see illustrations of a smoker’s lungs. Perhaps then people who don’t have Lyme would better understand. To reiterate, Lyme pain is not the same as the typical aches and pains of aging, and it needs to be treated seriously, by a Lyme Literate Medical Doctor (LLMD). You can find one here. 


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: lymewarriorjennifercrystal@gmail.com

lyme literate doctor

The Dangers of Playing Doctor

by Jennifer Crystal

Being a Lyme-literate patient doesn’t mean you’re a Lyme-literate doctor. It’s important to know the difference.

 

Remember the old TV ad where the actor says, “I’m not a doctor, but I sometimes play one on TV”? Well, I’m not a doctor either, but sometimes I feel like I play one in real life.

I’ve become so well-versed in tick-borne diseases that I can distinguish between symptoms of Lyme and their co-infections; explain in scientific detail the issues with testing; talk biofilms and inflammatory cytokines and Herxheimer reactions. I have explained to actual doctors what it means when Lyme crosses the blood-brain barrier, why spirochetes evade antibiotics and how tick-borne illnesses affect acute infections. I know which blood tests I need to be ordered every month, and I can interpret the results.

I am Lyme-literate. But I am not a doctor. It’s important to remember the difference.

Anyone who has suffered from an illness for an extended period of time becomes knowledgeable about it. It’s a natural consequence of spending so much time in doctor’s offices and in bed. You get to know your symptoms—and the reasons behind them—because you’re living them first-hand. I consider this a positive effect of my illnesses, because I’m an informed healthcare consumer who can work with my doctors to make good decisions for my health. Moreover, I can help spread Lyme literacy by teaching others what I’ve learned.

The downside to this wisdom, though, is that we can start to view everything through the lens of our particular illness. Whenever someone tells me they have a rash, or flu-like symptoms, or idiopathic headaches, I immediately wonder, Could they have Lyme? We Lyme patients all know someone, either personally or in the public eye, who presents with what seem like Lyme symptoms, and we are sometimes too quick to share our opinion of the situation.

These people may very well have Lyme or some other tick-borne infection. I’ve had friends show me photos of bullseye rashes, or tell me stories of symptoms, and I’ve been able to point them to a Lyme-Literate Medical Doctor (LLMD) who has accurately diagnosed them with the disease I could only, as a non-doctor, suspect they had. It’s crucial for me to remember though that my role in that patient’s journey is simply to inform and where possible guide. Only an LLMD can make an actual diagnosis.

When one starts making blanket statements like “Oh you definitely have Lyme” or “That person doesn’t have Parkinson’s; it’s actually Lyme” one runs the risk of feeding into Lyme-related frenzy.  Someone who is new to Lyme recently asked whether LLMDs also feed that frenzy.

“Don’t they all just say everything is Lyme?” she asked me.

Well, no, they do not. A good LLMD will look at both test results and a clinical evaluation to assess whether a person is suffering from tick-borne illnesses or from something else, be it Parkinson’s, multiple sclerosis, or possibly an autoimmune disorder. A knowledgeable LLMD remembers his or her Hippocratic Oath: to admit when they don’t know, and to do no harm.

Lyme patients must do the same. It’s imperative that we help spread Lyme literacy. But we must tread carefully between offering educated advice and playing a role we’re not qualified to fill. Our illnesses are real. Let’s therefore stay true to our real-life duty as Lyme literate citizens: to help educate through our insight and experience, without trying to play the LLMD.


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 jennifercrystalwriter@gmail.com

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 jennifercrystalwriter@gmail.com

How to Be Your Own Health Detective

by Kerry J. Heckman
#MyLymeLife

Getting an accurate Lyme diagnosis can take years. With poor diagnostic tools and limited support patients are often forced to be their own health detectives. Here are six tips to help in the process.

 

The test result email popped into my inbox. I was driving and couldn’t look until I was stopped at a red light. This was it. The final clue in a seemingly never ending mystery. The diagnosis I’d been waiting almost two years to get. Two years of crippling health anxiety, and a slow steady decline, all resting on one simple blood test.

Many people who are eventually diagnosed with Lyme disease spent years leading up to it searching for the right diagnosis. Because of poor diagnostic tools, we’ve had to learn to be our own health detectives.

My journey started almost three years ago.I’d been ill for many years prior, but doctors assumed all my symptoms related to an autoimmune condition, Grave’s disease. Then, in May of 2014, my right leg started to feel “heavy” and was aching. I looked down and noticed it had blown up like a balloon. I ended up in the ER. At first, the doctors took it seriously, because they thought it was a blood clot. After the test came back negative, I was quickly discharged with no answers.

I went to my primary care doctor and she told me to wait a month and see how I felt. I immediately found a new doctor and he told me that unless the swelling was more than two inches different from the other leg I should simply ignore it. Ignore it? I was just supposed to walk around with a swollen leg for the rest of my life? No tests were ordered, no follow-up appointments were scheduled, so I moved on to another doctor, and another, and another.

Like a detective on an important case, looking up symptoms on the internet became my full-time job. I’d get lost down a Google rabbit hole for hours on end. My husband would practically have to pry my fingers from the keyboard. Every time I discovered a new lead I would follow it as far as it would take me, usually to another annoyed doctor, who’d send me away with an exasperated look. This continued for six months. Then I developed a new strange symptom a stabbing pain in my side. Again I went to the emergency room. This time I was admitted after a MRI revealed what looked to be an infection in my spine. It took the doctors five days to determine the infection wasn’t spreading rapidly enough to cause immediate concern. I was discharged again with nothing but another piece of paper with the diagnosis left blank.

From there I was passed between a rheumatologist and infectious disease doctor for another six months. When I went to see the rheumatologist, he said it was an infection; when I went to see the infectious disease doctor he said it was rheumatological.

But I didn’t give up. I found an integrative medicine doctor who was willing to think outside the box. She ran some preliminary tests for Lyme disease, and when they came back suspect, she referred me to a Lyme-literate medical doctor.

Those two years were some of the most difficult in my life, but I had to stay on the case. Here’s some advice on how to keep moving forward even when the puzzle seems impossible to solve.

How to Be Your Own Health Detective:

  1. Start thinking like one

From the very first symptom, everything is a clue. Keep an ongoing list of every symptom you experience. Even if it doesn’t seem like an important one, write it down. Keep a folder of all your test results. Compare and contrast the results over time. You never know what will end up being the missing link.

  1. Ask the right questions

Make a list of all your doctors. When a question pops into your mind, write it down under the heading of the best doctor to answer that question. By the time of your next appointment, you will a have a thoughtful list of questions to ask.

  1. Be confident in your symptoms

Before I had a diagnosis, I found that many of my symptoms were minimized or ignored by doctors. Some of these symptoms seemed small on the surface, but ended up being the most important clues. Don’t allow a doctor to tell you a symptom isn’t real,  is all in your head.

  1. Set boundaries when using the internet

Google and Internet forums are a good tool for health detectives. The problem is it can become an enormous waste of time and energy. Some good boundaries to set are to spend no more than 15 minutes a day researching symptoms or asking questions on forums. Make sure you verify everything you read with a trusted doctor; there is a lot of dangerous misinformation on the internet.

  1. Talk about your illness

When you talk about your symptoms with other people, sometimes they have good input. For example, back when my leg first became swollen, a friend of my mother suspected an infection. This was something none of the doctors had mentioned, but I kept it the thought in the back of my mind. It turned out she was right.

  1. Never, ever, ever give up

The worst thing you can do for your health is to give up. Sure, you’ll hit brick walls, but you’ll have to learn to break through them. Nothing is more important than your health, so you have to keep exploring until you feel satisfied with your care. If you can afford it, get a second opinion (and a third, and a fourth). Determine how far it is reasonable for you to travel and how much it is reasonable for you to pay, and then go to the best doctor you can find who fits within those parameters.

I was stopped by that red light for just long enough to open the email. I was scared to read it. What if it’s just another negative test to add to the list? But it was “positive.” After two long years of no diagnosis and countless doctors, I had my answer. I had Lyme disease. When you receive a diagnosis it can be a strange mixed moment of emotions. You are devastated to have the illness naturally, but even more so you are grateful to finally know what it is. My detective work paid off.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.