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Chronic Lyme Disease Series: Kelly’s Story

By Kelly Gibson

Reprinted with the permission of itslyme.com
#MyLymeLife

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure from my agents to look a certain way. I quickly began having symptoms again…

As an active kid growing up in New England, I was often playing outdoors behind our house, in parks, and on the soccer field. One morning in 2003, at age 10,  I woke up at my aunt’s home in New Hampshire with a sore spot on the back of my head. I couldn’t remember bumping it, and it didn’t hurt enough to mention that day. Two days later, my head was still sore. My aunt took a look, and noticed there was a tick embedded just above my hairline. The tick was extracted with a pair of tweezers, and nothing else was done.

For the most part from age 10-14, I was a normal, healthy kid. I hardly caught colds, and besides a broken arm or visiting my RN mother at work, I was rarely in hospitals. At age 14, I attended my first “Snow Ball”, our version of prom. About 40 minutes in, I had a nosebleed, blacked out, and then subsequently began vomiting. I was then taken home by a family friend, as it appeared as though I had been drinking – I had not. Having no other symptoms in the days following, no other treatment was sought.

At age 15, in addition to dance classes three nights a week, I decided to join the track team. During three out of my first five practices, I blacked out and vomited.  I was taken to a family doctor, who diagnosed me with a “sodium deficiency” as all my blood tests came back normal, but my sodium levels were slightly on the low side. The treatment? Eat more pepperoni and ramen noodles before track.

At age 17, I had started my senior year and had taken on a lot as Peer Leaders President, Student Council Vice President, Key Club Member, a High Honors student with two AP classes, and attending dance classes four nights a week after school. In November, I had suddenly felt weak after school one day. I called my dance studio to let them know I would not be coming, and instead went home and got into bed. I did not get out of bed for one week due to exhaustion, sore throat, weakness, dizziness, and headaches. When I decided to return to school the following week, I ended up blacking out and vomiting again. I was taken to the hospital to have tests done and an IV of fluids. All of my blood tests came back normal, with the exception of a mildly positive Epstein Barr Virus test. So when the speculation came down to anorexia, depression, attention seeking or EBV… EBV it was.

I had even more symptoms added into the mix… inability to stand for more than a few minutes without fainting…being the most compromising living in New York.

I was allowed to do the majority of the remainder of my senior year working from home and by graduation I had been feeling much better and therefore decided to continue with my plans to move to NYC for college the following autumn. As fun and exciting as NYC was, my health quickly declined- nausea, vomiting, dizziness, and headaches returned along with one new symptom: joint pain.  When I was home for winter break, I was taken to doctors again for another round of testing.  This time, the word “Lyme” had been mentioned. Sure enough, my Lyme disease test came back positive and I was immediately put on two months of Doxycycline. I began to feel much better, and more like my normal self. So much so, that I took it to the extreme and decided it would be wise to enter myself into the New York party scene. I did this for six months, and have never fully recovered.

By the time I saw Chronic Lyme Disease Researcher + Specialist, Dr. Kenneth B. Liegner in 2012, I had even more symptoms added into the mix: tremors, brain fog, muscle twitching, depression, and the inability to stand for more than a few minutes without fainting. The latter being the most compromising living in New York.  After an additional positive Lyme test, as well as positive tests for Babesiosis and arthritis, Dr. Liegner started me on continuous oral antibiotics (I haven’t stopped taking them since), and a few months later an 8-week stint of IV Rocephin. Both treatments had me feeling back to (almost) normal. I then chose another industry which was detrimental to my health: modeling.

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure to look a certain way. I quickly began having symptoms again but was determined and thus continued to work. After two years, I was back needing to receive IV’s again & began seeing a new Lyme specialist closer to my parent’s home. Dr. Richard J. Dubocq did everything in his power to allow me to continue my modeling dreams. He understood I was going to do it anyway, so he might as well help me to accomplish it! He began to not only treat me with oral antibiotics but also with other medications to help with the symptoms I was experiencing. I began to feel better again, but with the physicality of working both in NY and Europe, I need another boost of IV antibiotics and another six-month rest before returning to modeling again.

I lasted 8 more months. During the February fashion week of 2015, my neuropathic symptoms got so bad that by the end of six days of shows, I had trouble walking, difficulty finding words, insomnia, minimal short term memory, and had a droop on one side of my face. This led me to once again, return home for rest and treatment. I finally decided enough was enough, and quit modeling for good. Six months later, I felt well enough on my oral antibiotics to begin working again. I took a part time job as a front desk associate at a spa near my apartment. As I began to improve and take on more, I had the ability to move up throught the company. Two years later I am the spa director for the location working 45-50 hours a week, and feel well enough to take a couple dance and fitness classes per month.

I still have symptoms, but am able to manage them and live a pretty full life, even though it is not the life I intended to have. After having Chronic Lyme Disease for fourteen years, and only being treated with antibiotics for the last seven, I will most likely never be “normal” again, but I am proud of myself and so thankful to my family, friends, and doctors for getting me this far.

Kelly’s Symptom Breakdown:

First onset Lyme symptoms: Dizziness, fatigue, severe headaches, sore throat, vomiting, blackouts.

Recall tick bite/bullseye rash: yes; not that I know of.

Diagnosis before Lyme disease: Sodium Deficiency, Epstein Barr Virus

Chronic Lyme disease symptoms: Headaches, extreme fatigue, facial paralysis, tingling sensations, stuff neck, swollen glands, sore throat, twitching of muscles, eye floaters, extreme menstrual symptoms, buzzing in ears, nausea, vomiting, night sweats, costochondritis, shortness of breath, mood swings, depression, anxiety, numbness in body, stabbing sensations in legs, weakness, tremors, difficulty walking, difficult finding words and forming sentences, forgetfulness, memory loss, and rashes.

Lyme disease & co-infections diagnosed by: Persistent symptoms, Western Blot blood test.

Kelly is still being treated with oral antibiotics for Chronic Lyme, Babesiosis, and Bartonella, but hopes to soon be able to decrease antibiotics and supplement with herbal and homeopathic remedies.

Tackling 57 Miles to Take on the Fight Against Lyme Disease

Allison Donaghy is taking her fight against Lyme disease to the streets, for 57 miles to be exact.

 

As countless thousands prepare for the grueling 26.2 mile New York City marathon this fall, a Washington D.C. area woman has her sights set on a different goal. On November 2 she plans to run 57 miles from the Penn State track in State College, PA to the Bucknell University track in Lewisburg to raise funds for Global Lyme Alliance (GLA).

57 Miles? That distance would be an amazing accomplishment even for the most accomplished athlete. But for Allison Donaghy, who is battling late-stage Lyme disease, the challenge is even more awe-inspiring.

This will be the first 50+ mile run for Donaghy, a 2012 Bucknell alum, who was diagnosed with Lyme in 2016, after several years of searching for a medical answer to her many health issues.

She still deals with many symptoms that could have been prevented if she had been correctly diagnosed at the start, but Donaghy is not one to entertain regrets.

Donaghy, 27, was part of both the cross country and track teams during most of her years at Bucknell, decided to take on the lengthy 57 mile challenge to raise Lyme awareness. “At Bucknell,” she says, “the men’s cross-country team has a tradition of running from one campus to the other, so I am carrying on that tradition through my ultra-distance fundraising challenge.”

Allison Donaghy, North Face Endurance Challenge, Algonkian Regional Park, VA, April 2017

A life-long runner, Donaghy said that prior to being diagnosed with Lyme she had some health issues, but that trying to discover the cause was like a “wild goose chase.” She asked her then-primary care doctor for a Lyme test in 2015. But when only three of the five bands on the test came back flagged (the Centers for Disease Control and Prevention requires five for a Lyme diagnosis) her doctor told her she was probably just stressed. Yet her symptoms persisted and grew worse. Donaghy began losing her hair, felt extremely tired, suffered constant headaches, joint pain and digestive problems.

After several ER visits, she went to the Mayo Clinic in Florida and saw a number of doctors there, but left with no answers. She also saw gastro-intestinal doctors and was told she might have Crohn’s disease. One doctor diagnosed Donaghy with chronic gastritis. “But because I was having so many other non-digestive issues, she urged me to see another specialist, perhaps even a Lyme literate doctor,” Donaghy says. She took the doctor’s advice, found a Lyme Literate Medical Doctor and was diagnosed in short order with chronic Lyme.

“I was relieved I had an answer,” says Donaghy, a freelance writer/editor who works as an assistant manager at Pacers Running in Alexandria, Virginia, “but I wasn’t sure if the treatments would work.” She was put on four months of antibiotics and other medicines, numerous supplements and changed her diet radically.

“I feel a lot better, but it doesn’t mean I don’t have bad days,” she says. “I still deal with symptoms which could have been prevented if my initial doctor had known more about Lyme and I had been correctly diagnosed. But I feel fortunate that I am still able to run and do many things I love, compared to others who struggle with a late diagnosis of Lyme.”

On November 2, Donaghy’s plans to run and walk, stopping every five miles to make sure she has enough nutrition and hydration. She will have a crew on hand during the run to make sure she’s okay and her twin sister, a cyclist, will be riding alongside her.

“I’ve been running for as long as I can remember,” she says, “and running to raise awareness was an easy leap for me.” Nevertheless, she knows it won’t be easy. “I have no illusions that it isn’t going to hurt a lot, but I am excited about the challenge.”

Naturally, she hopes people will donate to support her fundraising effort (see link below). “Some of the stories I’ve read [about Lyme sufferers] are heartbreaking. Their lives are forever changed by the disease. These individuals are the ones who motivate me to run more than anything. I want to make a difference in the lives for those who are so much worse off than me.”

“Allison is truly a Lyme Warrior,” said GLA’s CEO Scott Santarella. “We’re deeply appreciative that she wants to raise awareness and funds that are so important in fighting this and other tick-borne diseases.”

Donaghy says she decided to advocate for GLA because “the organization’s mission to fund research and educate doctors about Lyme disease really resonated with me. I hope that the funds I raise will make a real difference in someone’s life.”


Click here to support Allison’s amazing 57 mile run.


Lyme Disease: The View from Canada

by Lori Dennis
#MyLymeLife

Lori Dennis shares insight into the Lyme madness facing Lyme patients in Canada

 

Ever since my adult son fell ill with Lyme in the fall of 2012 and we were plunged into the upside down, inside out, maddening world of ‘Lymeland’, I have witnessed the excruciatingly slow growth of a network of doctors and naturopaths who now treat chronic Lyme disease. For their own protection, most of these medical professionals must deliver care under the radar. In some U.S. cities and states, here in Canada, as well as Australia, Sweden, Amsterdam, and in many other countries around the world, doctors dare not use the “L” word for fear of professional reprisal, which happened several years ago to several of Canada’s finest Lyme literate physicians.¹

Only a few years back, most doctors here in Canada actually insisted that ticks don’t cross the border. Many mainstream doctors still believe this to be true. Here, as in most places worldwide, when you mention Lyme doctors will mock you and turn their backs, emergency rooms will send you home during a medical crisis offering little more than an hour of oxygen, insurance companies won’t provide coverage, family and friends roll their eyes, and politicians will speak in vague but grandiose terms but never hit the mark on what is actually needed now to help Lyme sufferers.

While some doctors in both mainstream and holistic medicine are trying to help, there are not nearly enough medical practitioners in Canada to serve the world’s fastest growing pandemic and patient caseload.

Despite what doctors and politicians tell us, ticks are in fact crossing the border and we do in fact have people suffering from persistent, or chronic, Lyme in Canada. However, Canada is a good 10 years or more behind the U.S. in its recognition and treatment of this disease—which is a gloomy prospect indeed.

While there is no official count of the number of cases here to date, I am told that we can safely guess that our numbers are 10% of that of the U.S. So, if there are 329,000 cases per year across the US (and we all know that is a gross underestimate), then it is safe to say that we have 32,900 cases per year here in Canada.

According to recent vector expansion models,² by 2020, 80% of the Canadian population, which amounts to over 28 million people, will be exposed to the deer tick, the main vector for transmitting Lyme bacteria.

This is why so many of us were painfully disappointed in May when our country’s Health Minister Jane Philpott released the first-ever Federal Framework on Lyme Disease calling for a $4 million investment to establish a Lyme disease research network with the aim of generating new knowledge to improve diagnosis and treatment. This investment is a mere pittance when you consider the huge financial burden that most Lyme patients are forced to assume as they are currently given no choice but to seek medical attention outside the Canadian system.

The framework offers no treatment plan for the tens of thousands who are currently suffering from chronic Lyme disease. Rather, it calls for a focus on surveillance, sharing of best practices, prevention and education. All important, to be sure, but not the immediate priority for those who are currently sick and dying without medical care.

Not only that! Minister Philpott refused to acknowledge 40,000 petition signatures, tens of thousands of comments and thousands of personal letters all pleading for her help, asking her to do right by those who are suffering. Lyme sufferers begged for equitable access to appropriate testing, diagnosis and treatment.

We continue to be left with the full responsibility of navigating this complex and debilitating disease entirely on our own. Here in Canada, there are far too many people who are forced to live with excruciating pain amongst other debilitating symptoms.  Far too many men, women and children who are bed-bound, wheelchair bound and unable to function. Canadians who cannot wait another five years let alone one more year for doctors to provide medical care.

I see the results of these gaping holes every day. Men, women and children suffering beyond description, unable to get treatment, forced to find the funds necessary to cross the border to the U.S., using all their savings, selling their homes, losing relationships, their livelihoods, their dignity and often relegated to suffer in silence because they have a disease that we cannot talk about here.

While our Federal government has offered all the ‘right sound bites’ calling the framework a way to move forward, it is far too meager a commitment to have a substantive impact in this very real health crisis.

Far too many Canadians have no idea that chronic Lyme disease is a global medical crisis.  Our government, by negating the seriousness of this health crisis, may have pulled the wool over the eyes of an unsuspecting public for now, but one day, Canadians will understand that our government has failed to meet a health crisis of the first order.

Dear Minister Philpott. Lyme disease patients deserve so much more. Lyme disease is here now and the number of cases continues to grow in every province across the country. With or without your acknowledgment and support, in the end, it will be the strength that we draw from one another that will allow us to climb out of this rabbit hole, together, whole and healed.

¹ case of “persecuted” Lyme officials
² refer to studies


lori dennisOpinions expressed by contributors are their own.

Lori Dennis is a registered psychotherapist and author of Lyme Madness, available on Amazon. For more information, go to loridennisonline.com

Dear Lyme Warrior … Help!

by Jennifer Crystal

EVERY COUPLE MONTHS, LYME WARRIOR JENNIFER CRYSTAL DEVOTES A COLUMN TO ANSWERING YOUR QUESTIONS. HERE ARE HER ANSWERS TO QUESTIONS SHE IS FREQUENTLY ASKED.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

Since blood tests aren’t 100%, how can you be definitive you have Lyme?

Lyme disease is difficult to diagnose for exactly the reason you describe: there is not yet a reliable test. This is because current tests look for antibodies for Lyme in your blood, rather than for the bacteria itself. Western Blot tests from labs like Igenex are more sensitive, looking for a larger spectrum of bands than the standard CDC test, but Western Blot tests are still not fool proof. The best way to know if you have Lyme is to get a clinical diagnosis by a Lyme-Literate Medical Doctor (LLMD), who will look at your complete medical history and symptoms.

In our society we tend to think tests are the only way to diagnose disease, but it’s important to remember that doctors diagnoses lots of illnesses—like colds, sinus infections, and the flu—without tests. We trust their expertise in those areas and we have to do the same with Lyme, as long as the doctor is Lyme literate. My CDC tests did come back positive—for Lyme and co-infections babesia, and ehrlichia—but it was my doctor’s clinical expertise that made me sure of my diagnosis.

The other way you can tell you if really have Lyme is based on how you react to treatment. If you experience a Jarisch-Herxheimer reaction, when you feel worse before you feel better because the antibiotics are killing the Lyme bacteria faster than your body can eliminate them, then you know the spirochetes really are there.

The CDC states that laboratory tests are “helpful” in diagnosing Lyme, but not definitive. The best thing you can do is find an LLMD whom you trust. Had I not found an LLMD to diagnose and treated me accurately, I would still be bedridden.

 

I had Lyme years ago, and now I think I have a new infection. If my blood tests come back positive, how will I know if that’s an old or new infection?

Blood tests look for two different types of antibodies: Immunoglobulin G (IgG) and Immunoglobulin M (IgM). IgG are longer-term antibodies that are produced later and stay in your system after you’ve had an infection. If you had chicken pox as a child, you still have IgG antibodies for chicken pox. IgM antibodies are produced more immediately, and represent a new, acute infection. Since you had Lyme before, you will still have IgG antibodies for it. If you show IgM antibodies, however, that’s a sign of a new infection. Your LLMD will be able to differentiate between the two.

That said, after a tick bite, it can take your body awhile to build up enough antibodies to produce a positive blood test. For that reason and for the reasons outlined in question 1, it’s important for you to see an LLMD who can evaluate whether your symptoms are a sign of new or recurring infection, and also whether you have new or recurring co-infections.

 

What helps most with low blood sugar?

Lyme disease can impair adrenal function, which in turn can cause reactive hypoglycemia (blood sugar swings). This is also a common symptom of babesia. Hypoglycemia was one of the first symptoms I experienced. Shortly after finding a strange red rash on my forearm, I fainted one day due to low blood sugar. This had never happened to me before. I continued to have low blood reactions at inopportune moments for years. Though doctors confirmed I was hypoglycemic, they never looked into why I’d suddenly developed it. Had they, my tick borne illnesses might have been diagnosed much earlier.

Now that I have an accurate diagnosis and have been treated, my hypoglycemia is better, but not gone. There are a few things that have helped me the most. The first is sticking to a gluten-free, sugar-free diet. This has helped my blood sugar stay more stable, with the added bonus of keeping intestinal yeast overgrowth at bay.

I try to limit carbohydrates like bread and pastries (even the gluten-free, sugar-free kind, because they still cause a quick rise and then drop in blood sugar) and instead eat whole grains like rice and quinoa. I’ve found that it helps to have protein and complex carbohydrates at every meal and snack. The protein gives me sustained energy; without it, my blood sugar will crash an hour or two after the meal. The carbohydrates fill me up and raise my blood sugar to a healthy level; without them, I feel nauseous and lightheaded.

I know when my co-infection babesia is flaring up because in addition to air hunger  (feeling like my body isn’t getting enough oxygen), exertion fatigue and headaches, my blood sugar crashes more frequently, and I have bouts of lightheadedness. I’ve found that during these times it helps to eat meals rich in iron. A steak and a big bowl of spinach can make a big difference. Cinnamon is also a great blood sugar stabilizer. Try sprinkling some on steel cut oats with protein powder for breakfast.

Finally, I recommend always having snacks on hand. You never know when you’re going to get stuck in traffic and your blood sugar will drop. I always carry a granola bar and a box of raisins in my purse, and I keep a juice box (made with 100% juice and no added sweeteners) on my nightstand, for those pesky middle of the night crashes.


Opinions 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 atjennifercrystalwriter@gmail.com

To Be Blunt: How Chronic Illness Made Me More Direct

by Jennifer Crystal

Having a chronic illness can sharpen your communication skills

 

A dear friend of mine passed away from cancer last year at only 38 years of age. In one of many conversations I had with him in the year leading up to his death, I asked how his diagnosis had most changed him.

“I have zero tolerance for bullshit,” he replied.

My friend was patient, humble, and kind. He could—and gladly would—listen to anyone for hours, taking the time to really process what they were saying before offering a thoughtful response. He almost never had a knee-jerk reaction. He also never, ever swore. Therefore, his response to my question stunned me. But it also made perfect sense.

When you have limited energy, as is the case for most Lyme sufferers, you have no time for drama or uncertainty. You can’t waste time analyzing conversations or situations for some mystery subtext, because you don’t have it to give. When you are deciding whether you can shower or do the laundry—but not both—you start to look for the most efficient ways to deal with all aspects of your life, be they physical, mental or social.

My friend recalled a scenario in which a colleague stopped by his office, asking for advice on how to talk to her boss about a certain issue. He remembered getting antsy, because he was sick and had limited time to do his work, but also because he realized that the only person who could adequately answer her question was the boss himself.

He remembered thinking, just go talk to him directly, and then we won’t have to analyze what he might be thinking or what he might have meant by whatever he said.

Knowing how tired my friend was and how hard he was working to triage his life, I didn’t see his thinking as out of character. I saw it as smart. As common sense. As an ability to see the forest for the trees.

I, too, had learned to see the bigger picture while dealing with a long-term illness. I, too, had learned to step back, to ask, what’s really going on here, and how can I best deal with it? In my healthy days I was a chronic over-analyzer. I spent hours, entire days, tearing apart a situation—usually involving a boy—and while I can still fall into that pattern, the repercussions on my health are too severe to keep that mindset for long. I simply do not have the luxury of giving situations the mental energy I used to. I must conserve my mental energies as well as my physical ones. I have no time for bullshit.

As such, having Lyme has made me much more direct. If I have a concern, I communicate it. If I’m not sure what’s going on in a relationship, I ask about it. If I need clarification on what someone said, I ask for it. While I still go to friends for advice, nine times out of ten I go directly to “the boss,” whoever or whatever that might be in a given situation.

Some people are startled by this bluntness. They are taken aback by the directness of my statements. I’ve seen the looks on their faces and watched their uncomfortable responses, and I’ve learned that I sometimes need to soften my directness, to go about it in a way that works for me and for the person I’m addressing. I try to do this by being a compassionate, active listener and making clear that I want conversations to be a dialogue. For example, I might say, “When we were talking earlier, I heard you say_____. I think you meant ______, but want to make sure I understood you correctly, because that statement made me feel ______.” I’ve found that it helps to use “I” statements to put on the onus on myself instead of someone else.

Overall, my candor has been a good thing. It has freed up mental and physical energy. It has allowed me to be a better communicator. It’s helped me to express what I need to without beating around the bush. For years of illness I worried, Well, if I go to that gathering, what will I do when I get overtired and need to leave early? Or, will there be food I can eat at that dinner party? Now instead of wasting energy on anguish, I simply state, “I’m really excited to celebrate with you, but just want to give you a head’s up that I’ll probably only be able to stay an hour or two” or, “I’m gluten-free, but don’t worry about me—I’ll bring a dish to share.”

And that’s it. There are no questions, there’s no wondering, there are no hard feelings. I set my parameters from the get-go, and then move along and have a good time. Like my friend, I’m glad for the change my illness has brought; it’s both liberating and empowering. Try it!


Opinions 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

Natural Isn’t Always Better: Getting Real About Pharmaceutical Medication

by Jennifer Crystal

Our society’s focus on living naturally has created a stigma around the “dangers” of pharmaceutical medications. But for patients with complex illnesses, like Lyme, it’s not that simple.

 

One of the most challenging symptoms of neurological Lyme disease is insomnia. I’ve wrestled with it on and off throughout my two-decade battle with tick-borne illness. During my very worst point, I was literally awake for weeks. In extreme distress, I cried that I didn’t want to die but couldn’t live another second if I didn’t sleep. My doctor prescribed a short course of a heavy-duty sleep medication to knock me out.

“Don’t take it,” a friend cautioned. “It’s such strong medication. Your body has the natural resources to get the sleep it needs. Try some lavender oil or breathing exercises.”

I was way past the point of being helped by natural remedies, yet I shared my friend’s concern. We’d both fallen under the common belief that natural is better. In a society where people are focused more and more on living naturally, a stigma has grown around the “dangers” of pharmaceutical medicine. The message seems to be that “natural is good, medicine is bad.”

But for patients with complex illnesses, it’s not that simple.

Sure, there are benefits to living naturally. It’s healthy to put organic food into our bodies and environmentally-friendly fuel into our cars. Yoga, meditation, and mindfulness practices are great ways to naturally center ourselves. In Lyme treatment, natural supplements often complement our medication regimes.

But natural methods are not always better. For example, some people use the mineral colloidal silver to combat infection. Just because it is a mineral doesn’t mean it’s safe, though. High levels of colloidal silver can permanently turn the skin blue, or cause liver damage. I know one patient who wound up hospitalized in renal failure. Another friend took colloidal silver for bronchitis, which turned into a severe case of pneumonia that required stronger antibiotic treatment than she would have needed if she’d taken conventional medicine.

When you’re fighting a multi-system bacterial infection, pharmaceutical medication is life-saving. Antibiotics kill spirochetes, plain and simple. Some Lyme patients are eventually able to wean off antibiotics once their infections are cleared up, and continue with homeopathic or naturopathic treatments. No one wants to be on medications any longer than their body needs them.

To avoid them when your body does need them, however, is dangerous. A new study by psychiatrist Dr. Robert Bransfield, published in the journal Neuropsychiatric Disease and Treatment, found that there were over 1,200 suicides per year1 related to tick-borne illness. Had I not taken the heavy duty sleep aid to get through the worst of my insomnia, I might have become part of that disheartening statistic.

I didn’t stay on the medication forever. In fact, I only used it for a few days. Then my doctor slowly moved me to a less potent medication, which worked in tandem with my neurofeedback therapy, a non-invasive treatment that relied on my body’s own internal signals to help me heal. My sleep doctor wisely reminded me that Western medicine helps you get through crisis, while Eastern medicine gets at the root of a problem and deals with more long-term effects. Both, he said, are necessary for proper healing.

This can be a hard pill to swallow for people intent on only going the natural route. Take the case of Luitha K. Tamaya, a shamanic practitioner who shunned conventional medical treatments—until she suffered post-partum depression. Her traditional techniques were not enough to see her through this condition. Reluctantly, Tamaya turned to pharmaceutical medication, “a decision that has since had surprising and beautiful results.” The medication helped her heal and, moreover, led her to a new understanding of her more natural beliefs: “I now understand that shamanism can encompass and enrich all of our modern sciences, instead of standing apart from them.”

I have come to the same opinion. What’s needed is a balance of Western and Eastern medical philosophies. I have been on a non-narcotic sleep aid for years. I’ve never had to increase the dose, and it has not caused any adverse side effects. “That’s effective use of medication,” my doctor told me, when I worried I’d been on the medication too long. I continue to complement this conventional treatment with neurofeedback therapy. Similarly, I continue to battle spirochetes and other tick-borne infections with a mix of pharmaceutical, naturopathic and homeopathic remedies.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide what course of action is best for treating your one or more tick-borne illnesses. Your doctor should monitor your reaction to all treatments, whether they are pharmaceutical or naturopathic. As you decide together what’s best for you, just remember, natural is not always better.


1 Bransfield RC. Suicide and Lyme and Associated Diseases. Neuropsychiatric Diseases and Treatment. 2017 Jun; Volume 2017(13):1575—1587


Opinions 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

A Lyme Warrior Bites Back

Heidi Buono wants others to have a fighting chance against Lyme disease. She is raising awareness about Lyme and other tick-borne diseases through her “Bite Back Against Lyme Run-Walk” in Albany, NY.

 

Nine years ago, on Halloween night, Heidi Buono received the scare of her life.

Although she had suffered from migraines and achey stiff joints in the past, she had simply dismissed her ailments as signs she was getting older. But that Halloween, she suddenly experienced fatigue so overwhelming she was unable to get off her living room couch. As Buono’s symptoms worsened in the days and weeks that followed, she underwent countless medical tests, but these all turned out negative. She couldn’t find a doctor near her Albany, NY home who could help her resolve the mystery.

Barely able to walk or talk and unable to care for her three children, the distraught Buono and her husband scoured the internet for answers, eventually finding a Lyme-literate physician two-and-a-half hours away who diagnosed her with late-stage Lyme and other tick-borne co-infections.

Heidi Buono with her daughter
Heidi Buono, pictured here with her daughter

In the years since, life hasn’t been easy for Buono. All three of her children were diagnosed with Lyme and like most tick-borne disease sufferers their ailments come and go. Not quite three years ago, Buono’s mother—who had been suffering from chronic Lyme—passed away suddenly. With all the upheaval, Buono then suffered a serious Lyme relapse. She gave up her job as a life coach for special education teenagers and moved the family to a new home with a smaller lawn, hoping to reduce their exposure to ticks.

Now Buono is more determined than ever to make something positive out of her struggles. “I really feel it’s my mission in life to help those who are suffering from Lyme disease,” she says. “When someone mistakenly says that Lyme isn’t a big deal, I’m happy to stand up and set them straight about this debilitating illness.”

To raise public awareness about Lyme and other tick-borne diseases, Buono is organizing a “Bite Back Against Lyme: Albany Run-Walk” to be held Sunday, September 10 at The Crossings of Colonie, in Loudonville, NY. Proceeds from the event will benefit Global Lyme Alliance, the nation’s leading nonprofit dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness.

bite back against lymeThe 5K run is open to all ages and abilities and will start at 11 a.m. inside The Crossings of Colonie park and a 1.5 mile walk will follow. Registration for all will open at 9:30 a.m. The Race will cover a flat 5K loop on designated routes, ending back inside the park. The event will be held rain or shine.

Individuals can pre-register for $35 each; families (up to six participants, same household) can pre-register at the family rate of $100. Registration on the day of the event is $40 for individuals and $105 for families. Participants who pre-register by September 1 will receive a free t-shirt.

Buono has organized similar Run-Walk events in the past, most recently in 2014. But today she feels it’s more important than ever to speak out about the danger of Lyme. “Unfortunately,” she said, “even in upstate New York where Lyme poses a very great risk, people—including doctors—don’t seem to get it.” This worries her. “My son’s friend found six ticks on himself, but when he went to the doctor, he was only given two antibiotic tablets—not enough to treat anything, much less early Lyme or other tick-borne illnesses.”

The event plans call for Dr. Holly Ahern—a microbiologist at SUNY Adirondack and co-founder of the Lyme Action Network—to speak at the event.  Albany Massage therapists will offer free massages and there will be plenty of free snacks and bottled water. There will also be a raffle and a gentle Zuma pre-workout.

“We’re excited about this upcoming event,” said GLA CEO Scott Santarella. “In addition to raising awareness and funding—both so important to help fight Lyme and other tick-borne diseases—Heidi’s event will provide an opportunity for those who’ve been affected by these illnesses to come together and find a sense of community and common purpose. Bite Back Against Lyme is all in the cause of finding an accurate diagnostic test, effective treatments and ultimately discovering a cure for devastating tick-borne diseases.”

Learn more about Bite Back Against Lyme Run-Walk: register or email Heidi.

Adjusting to a Lyme Diet

by Emily Croot
#MyLymeLife

Learning to Love What There is to Eat When You’re on a Lyme Diet

 

For anyone familiar with the Lyme diet, you will know that while it is a useful healing tool, it’s also incredibly restrictive and difficult to adopt. Most Lyme patients are usually told to reduce foods that cause inflammation and this means eliminating gluten, lowering carbohydrate intake and limiting or entirely stopping dairy and sugar.

When I first made the transition to the Lyme diet I was a new college freshmen. The day after the doctor prescribed the diet I remember walking into the dining hall and letting out a cross between a laugh, a groan and a sob. There was absolutely nothing there I could eat. Spaghetti? Nope, for it contained tomatoes and gluten. Tacos? No again, corn and cheese. A veggie burger perhaps? That contains beans and wheat. A simple sandwich then? Well, not one with either chicken or bread.

Sitting down to eat with my plate of lettuce and carrots I suddenly experienced a very strong desire to throttle my doctor. She said that making the transition might be difficult, but that eventually I would adjust. But this diet was impossible! When exactly is ‘eventually’ anyway? Would that be before or after I died of starvation? Two minutes later I stalked out of the dining hall and proceeded to down a pint of ice cream while watching Parks and Recreation followed by a 30 Rock marathon in my dorm.

This was not a good start to my new Lyme diet.

Although I had been a healthy eater before Lyme, starting at Phase 1 of the diet seemed less of an uphill battle and more a cliffside plunge. Gone were my precious black beans, tomatoes and bell peppers. Locked away were my bananas, yogurt and peanut butter. And I hadn’t even begun to mourn the loss of ice cream, chocolate, and cookies!

As my Lyme disease advanced, I was forced to medically withdraw from college and return home. Despite the setback, I continued to plug along with the doctor’s orders. Breakfast was the easiest meal, eggs and a smoothie, but I missed slathering jam over English muffins or sharing extra cheesy homemade corn grits with my mum.

Lunches and dinners were a nightmare of endurance. Although we had Recipes for Repair: A Lyme Disease Cookbook, my family and I longed for our old standbys. Almost every one of our old recipes had an inflammatory ingredient and most of my dinner preps would end with me letting loose a couple choice expletives (though this  exercise was not limited to the kitchen).

During one such meltdown my mother gently coaxed me out of the kitchen to the living room, promising she would take care of dinner. She made me a cup of tea and let me cool off before joining me. She had noticed my increasing frustration with the diet and, though she supported my efforts, she recognized it was doing more harm than good. My mum agreed that gluten, dairy and sugar needed to be reduced but she recognized we couldn’t handle going all the way to Phase 1 of the diet. Moreover, after consulting a second doctor, we concluded my case didn’t warrant Phase 1 and switched to my mother’s more sensible dietary plan.

The next day we went on a grocery store shopping spree followed by a raid of our library’s cookbook section. When we returned home with our arms full of books and shopping bags, we were ready to tackle some new recipes. Our kitchen was now stocked with berries of every color, a forest of leafy greens, a myriad of strange and exotic vegetables, nuts and seeds of every shape and size, and spices from around the world.

With my cast-iron skillet in hand and a renewed enthusiasm for cooking, we figuratively ate our way across the planet. One night, as I wiped my eyes from the stinging onions and pungent garlic, the lights from St. Peter’s Basilica twinkled outside my window. The next night we sat on a New England beach, the salty breeze stinging our eyes as we slurped seafood chowder (dairy-free and gluten-free naturally). In the mornings we inhaled the sweet air of the English countryside over a bowl of fresh oats, honey and blueberries. And so each meal brought us to a different corner of the globe.

The anti-inflammation diet had become less of a schlep for me through culinary purgatory and more of a gastronomic expedition around the world. Although  are still times when I slip up and sneak a fresh baguette or a wedge of extra sharp cheddar into the grocery cart, those times are rare and enjoyed on only very special occasions.

Since starting mum’s dietary transition, I have fewer bad days and can manage my symptoms more effectively. Now I hardly give my restrictions a second thought. Who cares that I can’t have pizza when there’s Moroccan-spiced salmon, chana masala, or delicata squash soup?

Bon Appétit!


Opinions expressed by contributors are their own.

Emily Croot is a student, writer, and cook splitting her time between New Hampshire and Union College in New York. She wants to help others and change her little corner of the world one person at a time. 

Partisan Politics in Lyme Disease

by Jennifer Crystal

This past year we’ve seen our country’s politics become sharply divided, even though our politicians are supposed to be working together for the greater good of the American people. Watching the news, I’m reminded of the partisan politics of Lyme disease: the doctors occupy two divergent camps, the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS).

 

Why would there even be two camps of diagnosing and treating Lyme? We don’t hear about that in cancer, or lupus, or rheumatoid arthritis. Sure, doctors may have different opinions on how best to treat these ailments, but there isn’t an overarching political divide that makes it difficult for patients to get an accurate diagnosis or proper treatment in the first place. Why is that the case with Lyme? How can a disease be so controversial?

Friends ask me this all the time. Until they go through it themselves—until they find a tick bite and have to talk about testing and treatment options with their doctors—it’s hard for them to understand the rift, and it’s equally difficult for me to explain it without giving what feels like a lecture. But it’s important for everyone to understand the basics of Lyme politics, so that when they do get a bite or symptoms, they can make educated decisions. As an informed constituent, I will try to provide a layman’s primer on the two “political parties” of Lyme.

IDSA’s guidelines for treating Lyme disease state that most cases can be cleared up with three weeks of antibiotics, and they do not recommend treatment beyond that point or recognize the existence of chronic Lyme disease, which I have long suffered from.

The problem is that not all patients are diagnosed correctly and immediately. Because Lyme tests only look for antibodies against the infection rather than the actual bacteria, they miss 30-50% of positive cases. Adding to the difficulty of diagnosis are the disease’s nebulous symptoms and their staggered manifestation throughout the human body over months or even years.

Unfortunately, doctors following IDSA guidelines rely heavily on these faulty tests. They also look for the “tell-tale” bull’s-eye rash, called Erythema Migrans or EM. However, this rash appears in less than 50% of all Lyme cases, and can also present in different forms and at different periods of the infection. My initial rash was a blotchy series of red dots on my inner forearm. Only years later did bull’s-eye rashes appear on both of my elbows.

Had I been accurately diagnosed with Lyme when I first discovered that initial rash, three weeks of antibiotics would likely have cleared up the infection.

But I wasn’t diagnosed for another eight years. Left untreated, the Lyme bacteria in my body replicated and spread, crossing into my central nervous system. By the time I was diagnosed, three weeks of antibiotics wouldn’t have touched such a severe, multi-systemic infection. Think of it like cancer: a small, Stage I cyst would require simpler treatment than metastasized Stage IV cancer. My infections were late-stage and therefore required more prolonged treatment.

Luckily, I found a Lyme Literate Medical Doctor (LLMD) who was able to treat me effectively. ILADS trains doctors in the complex diagnosis and treatment of Lyme and other tick-borne diseases. ILADS doctors understand the inaccuracy of testing, and therefore they rely on their clinical expertise to make a diagnosis, just as they would for a sinus infection or a cold. They recognize that Lyme often goes undiagnosed and untreated, and that late-stage Lyme requires longer treatment than the stringent IDSA guidelines allow. ILADS has written its own set of guidelines.

Both sets of guidelines include evidence-based research. Why, then, would there be such a discrepancy? To answer that, you have to look at who wrote the guidelines, and their conflicts of interests. As explained in the documentary Under Our Skin, some of the panelists who wrote the IDSA guidelines had connections to insurance companies and pharmaceutical corporations. For financial reasons, they had a vested interest in denying the existence of chronic Lyme disease, and arguing against the efficacy of long-term treatment.

Seeing my illness be denied for reasons that have nothing to do with my health is like watching politicians deny the science of climate change.

In today’s world, we have to dig through “alternative facts” and “fake news.” So what’s real and what’s fake, what’s right and what’s wrong in the Lyme divide? Only you and your doctor can make the best decision for you, but I can tell you my own facts:

Fact #1: If I had been tested for Lyme disease at the time of my tick bite, it might have been negative, even though I later had a CDC-positive test.

Fact #2: Had I seen an ILADS doctor first, he or she could have made a clinical diagnosis despite nebulous test results, and my co-infections could have been taken care of immediately. The next 20 years of my life would have been completely different: I would have had my health.

Fact #3: Had I seen an IDSA doctor at the time of my accurate diagnosis, eight years after the initial tick bite, I would have been given only three weeks of antibiotics, and I would still be very sick. My symptoms would have gotten worse. Today, 12 years later, I would still be bedridden, instead of in remission and living my life.

Fact #4: The treatment my ILADS doctor prescribed allowed me to get well enough to teach, write, ski and paddle board.

Fact #5: My ILADS doctor is well-versed in co-infections, and treated mine effectively. Had I seen an IDSA doctor, my co-infections in all likelihood would have been ignored.

Fact #6: My ILADS-based treatment for chronic Lyme has not been dangerous, as IDSA purports it to be. Long term antibiotics have had no adverse effects, and I have not built up immunity to the drugs. When I get an acute infection, I still take a normal dose of different antibiotics, and react to them just the same as anyone else would. My doctor is careful and cautious, checking my blood once a month to make sure my medications aren’t harming me in any way.

My hope for Lyme is the same as my hope for our country: that eventually we can have bipartisan support, in this case for the common cause of healing people who are very sick. Until then, it’s important for patients, doctors, and those who are one tick bite away from Lyme to arm themselves with the necessary information to make educated decisions, so they will not suffer as I have.


Opinions 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

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