Tag Archives: lyme patients

What Lyme Patients Can Teach Us About the New Normal

by Jennifer Crystal

The start of a new school year is usually a time of excitement: new pencils, new books, new teachers and classmates. While there’s always some trepidation for students, teachers, and parents alike, there’s also a general thrill in the air in September. This year is different. With COVID-19 still very much a threat, schools have been scrambling to figure out the best plans for opening. Some have decided on remote learning, some are doing a hybrid form, and some have left the choice up to parents.

What’s the safest plan for children and teachers? How do we balance physical safety and mental health? How will parents juggle work with homeschooling? These are the questions communities have been grappling with.

For Lyme patients, this isn’t our first rodeo. We’ve had to miss school or work for months or even years due to tick-borne illness. Some children have to do hybrid forms of school, attending for a few hours a day or a couple of days a week and supplementing their education with at-home learning. Adult patients find themselves unable to work, struggling to make ends meet, pay medical bills, and fight for disability benefits. Some, like me, have to alter their work schedule—and their perspective—in order to maintain their health.

Lyme patients know the stress and anxiety that comes with these adjustments. While we certainly don’t have all the answers, we can offer some guidance on handling school and work-related choices during the pandemic. Here is some perspective I’ve gained from years battling Lyme, two of its co-infections babesia and ehrlichia, and chronic Epstein Barr virus (and, most recently, long-haul COVID-19):

  • The situation is temporary: This pandemic may feel like it will go on forever, but eventually, we’re going to be able to go back to school and work normally. For some Lyme patients, this type of full return is not possible, but many get well enough to lead fruitful lives in adapted ways. My own recovery has allowed for different capabilities at different times. It helps to remember that COVID-19 only requires temporary adaptation.
  • There is no perfect choice: Parents are agonizing over whether to send their kids to school. Unfortunately, there is no perfect solution, because we don’t know what will happen later in the fall or the winter. Some communities may get hit with a second wave of COVID-19. Some hybrid plans may work better than others. Children have different needs and capabilities, as do adults. There’s no cookie-cutter answer, just as there’s no set protocol for Lyme patients; moreover, no two cases cause the same exact limitations or have the same solutions. All you can do is make the decision that seems best for your family, based on the information you have.
  • Flexibility: My capabilities with chronic illnesses can change daily. Likewise, the decisions you make now regarding COVID-19 can change. Schools may alter their plans in a month or two. You may find that hybrid schooling isn’t working for your family and you need to switch to remote. You may be working from home now and get called back into your office in the winter. These changes are stressful, but the more we prepare for their possibility, the more adaptable we become. If kids see adults being flexible rather than worrying and complaining, they are more likely to emulate that behavior.
  • Health comes first: This is a hard one, especially when other needs like finances are so pressing, but we need to be healthy in order to work and live well. For years I tried ignoring my illnesses, pushing through my symptoms, and that just made my recovery longer. Making adjustments, taking precautions, and following protocols now will lead to less frustration and fewer restrictions in the long run.
  • Self-care: This one is also hard, especially if you’re working, parenting, and teaching, all from home. There simply isn’t enough time in the day to do it all, and keep your sanity. Lyme patients feel this way when they think about being sick, missing or trying to keep up with work, taking care of family, and paying bills. But even when we’re sick, busy or stressed—actually, especially during these times—we need balance. Be sure to carve out time for whatever it is that grounds you or your kids: taking a walk, meditating, running around the backyard, reading a magazine, calling a friend. These days, it’s especially important to schedule time away from screens.
  • Remember the big picture: For Lyme patients, the big picture is getting healthy, or at least well enough to thrive rather than merely survive. During the pandemic, we have to think about what we need to do to survive so that we can someday thrive. This may mean that your child falls a little behind in school now, or that you aren’t meeting every deadline at work, because you’re also trying to live a balanced life. In both situations, it’s important to focus on the long game.
  • You know what’s best for you: Lyme patients are forever being told that they aren’t really sick, or that they should just do “xyz” and then they’ll feel better. But no one knows your body and your needs better than you do. Similarly, only you know what’s best for you and your family during this pandemic.

The good news about the current situation is that we’re all in it together. Lyme patients usually have a fear of missing out, because they’re the only ones missing school, work, or social events. Now, we can find comfort in solidarity. We will get through this—together!


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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

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The Lyme Voices You Didn’t Hear at TBDWG Meeting

The Tick-borne Disease Working Group (TBDWG) issued a public request to hear from patients willing to share their stories for its July 8, 2020 meeting. It’s an important part of these meetings, where the public and the TBDWG members can hear directly from patients, to better understand the dire need for answers and results.

Four of Global Lyme Alliance’s Educational Ambassadors submitted their public comments for this meeting. We’d like to highlight their stories and share them with you now. Below are the unedited submissions from Lyme patients Fawna Bough, Rhonda Howdyshell, Jen Kenley, and Robin Reich.


Fawna Bough

Fawna Bough_TBDWGMy name is Fawna Bough and I have struggled with tickborne diseases (Lyme, Babesia, Bartonella, Ehrlichiosis) for at least 14 years. I struggled for years to get a diagnosis which finally came in 2015. Since then I have been battling these tickborne diseases–most of which the costs have been solely my burden to bear as my insurance refuses to pay for most of the treatments, and my doctor appointments, related to my illness.  I have spent 10s of 1000s of dollars fighting this disease. The financial burden has changed most every plan I had for my life and retirement. I had to retire early from a job that I loved, realized that most of my family and friends thought I was a hypochondriac as I watched them distance themselves from me, and I continue to fight these diseases on a daily basis.

This disease brought me to my knees and almost took my life. I have heart and neurological involvement, have been bedridden, have permanent muscle damage, the list goes on and on… and I still struggle with mobility from time to time. These diseases have disrupted my immune system so much that I have now progressed into other issues i.e. POTS, Reynauds, etc. I will also share that these diseases have sadly changed me from the inside out. My personality morphed into a person that I literally did not recognize and I’m still trying to get myself back.  The neurological suffering of patients like myself is simply indescribable.

I am grateful that the Tick-Borne Disease Working Group is allowing TBD victims to voice their comments as this disease changes the trajectory of your life in every way possible. The barriers that are currently in place that discard us as patients need to be removed quickly and permanently.  There have been a variety of treatments that have been prescribed to me to help me heal; however, because of my diagnosis of TBD, my insurance will not approve those treatments due to their claim that chronic TBD does not exist and/or because the treatments that I prefer lean more toward holistic healing vs. traditional Western medicine. The treatment decisions for any disease should fall solely on the patient. There should be equality toward coverage of both holistic and traditional medicine.

I have suffered long enough, as has my fellow Lyme Warriors.  There are thousands of children that are getting TBD and not being diagnosed and these kids are being set up for a lifetime of suffering.  We have NO RELIABLE TESTING.  We have NO CURE.  Please help us gain equality in treatments.  Please help us.

Thank you for your time and consideration.

Fawna Bough
GLA Education Ambassador, Illinois


Rhonda Howdyshell

gla_rhonda howdyshell_tbdwgJust last week another doctor shared with me that it wasn’t possible to have advanced or undiagnosed Lyme Disease. Find that contrary to my own experience. I was only 8 years old growing up in Northern Virginia when my family thought sending me to camp in the Shenandoah Valley for 6 weeks would be a wonderful adventure! It was horseback riding, pond swimming, hiking, and outdoor showers and privies were all part of my summer adventure! Then one day a counselor was helping to brush and braid my hair when they found an engorged and embedded tick in my hair. It was a big deal and the nurse had to remove it, using a match to burn and make it come off. When I came down with a disseminated rash a while later—they quarantined me with measles. It was determined later it wasn’t measles. My later childhood was marked by allergy issues that had me on antibiotics often. Later I developed a strange blood disorder where I would bruise and bleed upon the slightest bump.

I moved to the Shenandoah Valley in 1979. Ticks were commonplace. Most symptoms Drs and I wrote off to getting older. including thyroid disorder, skin mottling, confirmed arthritis (suspected RA) in my hands and feet, and joint deterioration in my hip that required a replacement to walk.

I retired at 62 early, as the cumulative deterioration was making work very difficult. The next spring I found a tick attached to my chest. I had no bulls-eye, it was only on 8-10 hours. The subsequent flu, neck pain, and facial paralysis didn’t give me a clue. but a migrans rash that appeared on my calf sent me to the doctor and they diagnosed Lyme based on symptoms (note no blood test was administered! Which means the health dept/CDC didn’t have to count the case as confirmed Lyme). The speaking difficulty (not being able to remember words) and cognitive disfunction got more severe. (Like writing this account would have been impossible.). They gave me 14 days of doxycycline. Cured… NO, so I tried to accept my new normal of no energy, cognitive lapses, and arthritis throughout my body as my lot in life.

Then a friend suggested an LLMD doctor and I went to one near me. The blood tests were done and I tested “wildly positive” for Lyme. Treatment of 28 days of Doxy began and I felt some better. Then a course of two antibiotics followed. The treatment was harsh and I was sick (Herxing) daily on it. But still, I felt 60% better and I was grateful. Then I showed the LLMD the massive bruises on my legs and arms (had this since childhood) and a sore that wasn’t healing. Diagnosis? Secondary Lyme infection .. and this time the doctor tried a new trial – the WEIGMAN protocol. I remember it was just before Christmas and I decided to wait until after the holiday and I was tired of being sick every day from the meds. The protocol was cheap and effective, It gave me back my life.! It was a pulsed Mindi / Tindi antibiotic that has proven studies that show a complete kill of spirochetes over others that foster the formation of round cysts. (you know the ones that hatch out after the antibiotic cure and then multiply so you stay sick). It included boosting the immune system before starting it, to allow your body to fight along with the meds.

So my advice is:

  1. Change the CDC recommended 14-28 day doxycycline treatment to Weigman Protocol.
  2. Recognize that Lyme disease not addressed or under-treated will resurface when your body allows the remaining spirochetes to multiply.
  3. Encourage doctors to think “advanced” Lyme disease when seeing a patient with disseminated migrans rash, joint pain, thyroid disorders, MS, Parkinson like symptoms, and temperature of 97.
  4. Order health departments to count all cases of diagnosed Lyme even without a blood test (you see the test is so unreliable docs aren’t bothering to do it) – so we have no idea the number of cases. Keep in mind over a million dogs are diagnosed every year in the US.

Rhonda Howdyshell
GLA Education Ambassador, Virginia


Jen Kenley

As a patient with Lyme disease, and an Ambassador for the Global Lyme Alliance, it is difficult to put into tangible words what I want to convey to your team. The Lyme community just lost one of our greatest advocates this past week (as of June 24th), Dr. Neil Spector. Following your last meeting, I know that I speak for many Lyme patients when I say that we are deflated, crushed, and incensed by things that were said.  Most pointedly at the disregard for two million lives (“Post Treatment Lyme Disease” patients) in refusing to update the CDC’s treatment guidelines. The CDC’s guidelines have and continue to fail the Lyme community shamefully.  I know this personally, I have done the CDC’s advises Doxycycline regimen and am left with almost no immune system (after years of “PTLD”), terrible arthritis, ongoing night sweats, heart abnormalities and debilitating brain fog and loss of memory.  I am 33 years old, crying over my 5-year-old son at night because there is nothing else that can be done for me because of the “guidelines” in place. In September we had to sell our house to pay medical debts, because again, thanks to the CDC’s guidelines my continued treatment is not covered by insurance.  There have been NUMEROUS studies indicating that Lyme disease can hide in the joints and that people are affected for years despite these Doxycycline doses (Please see Tulane and John Hopkins studies). Many suggest a three-antibiotic cocktail and others, like Dr. Sapi (New Haven) propose enzymes and drugs to break down biofilms in remaining bacteria to enhance antibiotics.  To be completely candid, myself and a lot of others in the Tick / Vector-Borne Disease community have lost faith in the ability of this group to make empathetic, fact-based decisions following this past meeting. With Lyme now in all 50 states and enough PTLD patients to fill the city of Chicago, we can no longer be ignored.  We are pleading with every one of you to revisit and amend the CDC guidelines. For those unwilling to bend, please put aside your conflicts of interest and stand on the side of history that fights for humanity.

My life (and my 5 year old’s) is (are) in your hands.

Jen Kenley
GLA Education Ambassador, Tennessee


Robin Reich

gla_robin reich_tbdwgI need HELP in the Orlando Florida area… Will a doctor please message me if willing and able to assist me with this Babesia created with Lyme Disease. I have had it too long now…..and I am frightened. I want to live a wholesome life as best I can and I can not find a doctor who is legally able to treat me past the 21 days IV antibiotic treatment. Unless I PAY CASH. Also, is an Infectious Disease doctor LEGALLY ABLE to take care of patients for this (Babesia/Lyme) yet past the 21 day IV antibiotics? If so, who? I am having a very difficult time trying to find a doctor who will treat me past 21-day treatment and is able to use my health insurance coverage of any kind. I am going on 5 years with the exact symptoms of Babesia after having been treated for Lyme Disease with an integrative and natural medicine doctor who was guided by Dr. Richard Horotwiz’s books out of NY. The book entails details and treatments of my disease(s) to the T. I have gone to ANOTHER 2 local infectious doctors here in Orlando, Florida who say they DO NOT treat Lyme Disease. This is SURREAL at this day and age … I don’t have $$$ thousands of dollars to treat myself at [redacted] doctors … Sadly, I can buy a gun but I can not use my $384.00 a month Health Insurance to treat my disease when there ARE treatment options available out there, but only for cash … or am I severely missing something here?

Also, I’m on the backstretch of this thing or things/diseases Lyme or and Babesia…And I am already in debt from treating basic Lyme … 2 years unable to work (I only made six figures). And yes I have the credit cards I am paying off for that paid for treatment and or living without being able to work … I am a strong person and I insist on working again … I am working … willing to work … never took charity … have health insurance and yet … there ARE solutions out there … documented … but I need large amounts of cash to use them.

Maybe I will try this angle … Who has about $5,000 to $20,000 to give me to travel and treat my disease because of the Health MR. OZ’s of our world do not believe Insurance should pay for treatments found for my illness???? Please message me … I will keep all receipts to assure you that that is where the money will go … And I am an organ donor so science can study this mess … But … GOD BLESS AMERICA there are options out there but I have to be wealthy in order to use them!!

I am going on 10 years since my positive Western Blot diagnosis of Lyme Disease… and I do realize Babesia is a co-infection… However, I am currently treating myself -no doctor supervision. Because I choose to pay my mortgage … and possibly die in my own house without legal professional treatment versus moving into a tent because I had to pay CASH for the treatment … I am not sure if the “Samsara Herbs TICK Immune Support” will treat Babesia or only Lyme Disease … I started to lightly herx after 2 days so it’s doing something. Herx symptoms include morning headaches, eye inflammation/blurry, sweating, anxiety, neuropathy on the entire left side and is now agitated with tingling hot/cold increases. Or…. are these Herbs bringing the Lyme symptoms back that went into hiding versus KILLING these miniature beasts??

Who or where do I go for help? My mind has become boggled or continues to stay fogged with all the internet info and NO SOLID covered health insurance doctors who can legally treat me.

Robin Reich
GLA Education Ambassador, Florida

 

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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.