Tag Archives: lyme patients

maybe its lyme_gla

How the New “Maybe It’s Lyme” Article Hurts Lyme Patients

Is this becoming a trend? Another opinion piece on Lyme disease that dismisses post-treatment and chronic Lyme disease. The author calls these debilitating stages of Lyme an “identity” for people rather than an illness. And ridicules patients for finding solace online, in a community of people who are suffering from the same illness. Can you imagine someone writing an article that dismisses patients with late-stage Alzheimer’s, another illness that relies on a combination of clinical diagnosis and laboratory tests?

The story, “Maybe It’s Lyme. What happens when illness becomes an identity?,” by Molly Fischer feigns to take a fact-based approach. Yet when she cites Global Lyme Alliance (GLA), not once is there a direct quote, but rather second hand accounts from fundraising events. In one sentence the author states, ““chronic Lyme,” which can encompass a vast range of symptoms and need not be linked to any tick bite — has grown into a phenomenon often untethered from scientific method or peer review.” Yet if she had referenced the multitude of peer-reviewed studies on the GLA site or performed even a modest Google search for “Lyme disease research”, she would have found the science she quickly dismissed as lacking.

Does more research need to be done to better understand the persistent and chronic form of the disease? Absolutely! If she had called to speak with one of our two in-house Ph.D.s they could have had an in-depth conversation about tick-borne disease research, from basic science, understanding the persistent form of the bacteria, to treatment options. But that didn’t happen. Unfortunately, articles like this,  that dismiss and mock Lyme patients, hinder that progress because it influences the community that more research is not needed. Articles like this delay progress and ultimately hurts patients.

There is one item in the article we can agree with. Yes, there are some Lyme physicians who treat without science, studies, or clinical trials to support their protocols. Some are more genuine than others. But as in the early days of HIV, before protocols were developed, many doctors were forced to try various treatment options, looking for the right combination that would alleviate pain and suffering. And yes, patients desperate to feel better subscribe to these treatments. But what else would you suggest they do? There is no standard of care for anything beyond acute Lyme disease. And even that doesn’t work for everyone, with 10-20% continuing to suffer symptoms.

What does the author prescribe for the two million patients that will suffer from post-treatment Lyme disease by 2020? And the untold number of patients who did not have the “fortune” to be diagnosed and treated early in the disease, that while the bacteria had time to move to the patients’ heart and other organs, the illness got worse and worse, and then harder to eradicate.

The bottom line? We must work together to help patients, not tear them down.


GLA invites anyone needing facts about Lyme disease to reach out to us.

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: [email protected]

Chronic Fatigue or Feeling Tired?

by Kerry Heckman
#MyLymeLife

There is a difference between chronic fatigue and feeling tired. Have you developed chronic fatigue as a result of your Lyme disease?

 

I remember the moment when my husband said, “I get it,” and I knew he did. It was the time he’d developed an acute bladder infection and was stricken with a high fever. I had to go to work, so he took himself to urgent care. Later that evening he said, “I think I was putting on a show at the doctor’s office, I probably didn’t even seem sick. Then, as soon as I got home I completely crashed. I haven’t moved from this chair since.” That was it. The feeling I’d been trying to describe to him for years. It’s like using every last bit of adrenaline to get through a show, only to immediately collapse in the wings afterward. He could finally understand what I go through on a daily basis.

Everyone can relate to what it feels like to be tired. There are a million things to do and never enough time in the day. We stay up too late, clinging to the few hours we’re not working, and then slog through the morning fueled by cups of coffee.

Chronic fatigue—a common symptom of Lyme—is completely different. Chronic fatigue is a medical diagnosis and cannot be healed by a good night’s sleep and a day without commitments. It is there when you wake up, there with you all day long, and there when you fall asleep. Chronic fatigue presents differently in every person. Here are a few perspectives from others in the Lyme community:

“I feel like I am walking around with weights attached to my body.”
“The fatigue is like every little thing that you need to do, like say fold laundry, that would take a healthy person a half hour, takes a person with Lyme hours. We have to rest in between. I actually spend more time resting up to do something, than actually getting it done.
“Not quite up to starting the big game, but the big game is every day.”
“Feeling like you have been hit by a train or have a terrible case of the flu and are incredibly weak and tired, and that you can only get off the couch or out of bed with a huge effort. It is hard to think straight and nearly impossible to get anything done.
“It feels like you just finished running a marathon that you hadn’t trained for…and at the end of the marathon, you also got the flu and also got struck by lightning, which caused everything in your body to shut down.”

My available energy comes and goes in cycles, and sometimes it’s difficult to know how much energy I will have to spare. This is especially true in social situations, which seem to be the most draining. One day, I had the energy to go out with friends. I felt great, better than I had in months. We got Mexican food and talked for hours. We were joking and laughing so much, I almost forgot about my illness. I thought, I must be getting better, I haven’t had this much stamina in months. When I went to sleep my spirits were high.

Then I woke up and I couldn’t get out of bed for two days.

This is the difference between chronic fatigue tired and just being tired. There is a limit to what a person can do, and when they overdo it, it takes days to get the energy back just to take a shower. This was the feeling I found so hard to describe to my husband, which he finally understood when he got a serious infection.

Some Lyme patients are wheelchair bound, or spend months or years confined to a bed. I am fortunate in that, as long as I don’t run myself into the ground, my bouts of fatigue last only two to three days. I can’t imagine what it is like to go days on end and never feel the energy to get out of bed, but that’s the harsh reality for many Lyme patients.

It’s hurtful and invalidating when people compare chronic fatigue to just being tired. Lyme patients’ fatigue is caused by our bodies constantly fighting off illness, then on top of that we have to do everything else other people do on a regular day. We get so used to it, we forget what it feels like to be normal.

Next time, when you’re discussing your chronic fatigue and someone says, “I’m tired, too,” politely remind them it may sound like the same thing, but there is absolutely no comparison.


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.

HOT, HOT, HOT: WHAT A HEAT WAVE MEANS FOR LYME PATIENTS

BY JENNIFER CRYSTAL

When I opened up Facebook on July 4th, the app showed me a photo I’ve posted every year on that day since I joined the site. The scene is summer camp in Maine—where I got my original tick bite—and the year is 2002. My fellow Head Counselors and I are gathered around a hot grill, making pancakes on one of the hottest Independence Days on record. The temperature was 105 degrees.

Decked out in red, white and blue, my friends and I are smiling in the photo. I may have put on a good face—something Lymies do far too often—but inside, I felt like I was dying. Or said in another way, I felt like I was burning up.

July 4, 2002 was a brutally hot day for everyone involved. When I re-post that photo, my friends write the same comments every time: “The hottest I ever was.” “Even the lake was hot.” “The barometer for all other hot days. Am I hot? Yes. Am I July 4, 2002 hot? No? Then I’ll survive.”

All joking aside, I remember feeling like I legitimately might not survive that scorching day. Everyone was sweating, everyone was complaining, everyone was drinking lots of water. But I’d already downed two water bottles by the time I finished cooking breakfast, and still had a headache coming on. By noon that headache had turned into a full-blown migraine; the pressure was such that I wondered if my brain might explode right out of my skull. It felt like nails were being hammered into my left eyelid, over and over. I spent the afternoon sacked out on my bed, chiding myself for not being able to suck it up and play Capture the Flag. I felt weak and ashamed—not to mention nauseous, exhausted and debilitated by excruciating pain.

What I didn’t know was that my body had been harboring tick-borne diseases for five years at that point. I didn’t know that extreme temperatures can exacerbate Lyme symptoms, and that my already compromised system was fighting a much bigger battle than typical overheating. I didn’t know that the hot sun was enraging the bacteria in my body, bringing it—and its inflammatory manifestations, like the migraine—to the surface.

Why does heat affect Lyme so severely? For starters, spirochetes can’t live at very high temperatures. This is why some Lyme patients use infrared saunas, to try and kill off—and sweat out—the Lyme bacteria. Use of these saunas is controversial, however, because they make some patients much sicker. That’s because killing spirochetes at such a high and fast rate can cause a Herxheimer reaction, leaving the body full of dead toxins that it can’t efficiently eliminate. A day in the hot sun can have the same effect.

Another reason Lymies can’t tolerate extreme temperatures, both hot and cold, is because tick-borne diseases can damage the nervous system. Some patients’ bodies have trouble regulating blood pressure and heart rate, and extreme temperatures can send those processes into distress. Common Lyme symptoms of dizziness, fatigue, and joint aches—hard enough to deal with on a moderate day—are intensified in the heat of summer or the bitterness of winter. And because our nervous systems are out of whack, we often can’t recognize that we’re getting too hot or too cold until it’s too late.

I liken this sensation—or lack thereof—to being a lobster in a slow-boiling pot. You’ve all heard the explanation for why lobsters don’t try to climb out of their cooking pots: because the water temperature is slowing rising, the lobsters don’t notice what’s happening until they’re cooked. The same is true for Lymies on hot days. I can be outside feeling fine…fine…fine…and then suddenly, seemingly out of nowhere, I am not fine. Suddenly my face is on fire, my heart is racing, my glands are leaking sweat, and I’m feeling dizzy and faint.

Lyme treatment can also intensify these effects, since many medications (especially antibiotics in the tetracycline family) cause phototoxicity. If you are on one of these medicines, you can’t be in the sun at all, but even umbrellas, hats, and sunglasses don’t protect overheating. High temperatures and humidity, rampant at this time of year, are a dangerous mix for Lyme patients.

So what’s a Lymie to do? Here are a few suggestions for keeping cool:

  • Stay in—This may seem obvious, but when healthy friends are out playing in the sunshine and you have enough energy to join them for a bit, it can be really hard to say no. Remember, though, that your energy will be depleted much faster than usual in high heat. Cooler days will come, with better energy to go with them. Don’t waste what little reserves you have on a 100 degree day. If your home doesn’t have air-conditioning, see if you can stay with a friend, or rest at a local cooling center. Fans are not enough to cool an overheated Lymie.
  • Take breaks—Even if you’re feeling okay when you’re outside, your body will likely overheat without warning. Try to give yourself breaks before this happens, by ducking in to air-conditioned buildings or sitting in the shade.
  • Hydrate—I don’t just mean order a cold drink when you stop in to one of those air-conditioned places. I mean carry water with you at all times. Make sure you have more than enough with you for your outing, no matter how short it may be. You never know when you will get stuck in line at the pharmacy, and suddenly that overheated feeling comes on…
  • Indulge in cool treats—Without breaking the Lyme diet, you can enjoy refreshing treats. You may not be able to sip a frozen daiquiri, but you can drink flavored seltzer with ice, smoothies, and all-natural lemonade; you can eat naturally-sweetened ice cream (So Delicious is my personal favorite); and you can have popsicles like Paleo Frozen Pops or Luna and Larry’s Organic Coconut Bliss Bars.
  • Take a lukewarm shower—Your instinct might be to take a cold shower, but your body will have to work harder to regulate its temperature afterwards. Let the shower do the regulating for you!
  • Put your wrists in cool water—The pressure points on your wrists, and also on your ankles, react quickly to cool temperatures, and can spread that coolness around your body. Run the veins of your wrists under a tap to quickly lower your body temperature.
  • Put a cool compress over your face and neck—Similar to putting your wrists or ankles in cool water, this trick is a quick way to lower your body temperature.
  • Invest in a cooling towel—Sold at sports shops and at stores like Bed Bath and Beyond, Lowes, and Walmart, these towels are basically the opposite of heating pads. While running your own towel under cool water works just fine, these towels are specifically designed to quickly chill you, and are made to target certain areas of your body.

And finally, as always, be gentle with yourself. You are suffering from an insidious disease that rears its ugly head when the sun blazes down. Don’t chide yourself the way I did. You are not weak. You have angry spirochetes in your body, and if you treat them kindly during the heat wave, they just may let you go out to eat lobster, instead of becoming one. Then you can smile in the photo for real.