What Having Lyme Disease Taught Me About Love

I sat down at my computer as soon as I got home and threw “Lyme disease symptoms” into Google. Almost every symptom fit perfectly.

Before my Lyme diagnosis, they’d told me that I might just have “incurable depression,” and that my mind was the problem. They’d said that it could also be Hashimoto’s disease, chronic fatigue syndrome, a relapse of the Epstein-Barr virus from the mono I’d had as a teenager, a hormone imbalance, fibromyalgia, pernicious anemia, nutritional deficiency, Attention Deficit Disorder, Post Traumatic Stress Disorder, epilepsy, Multiple Sclerosis, narcolepsy, obstructive sleep apnea, or a plethora of other scary possibilities.

While I did end up being diagnosed with a (curable) hormone imbalance, fibromyalgia and ADD, these still hadn’t accounted for even a fraction of my symptoms. But Lyme did.

Inflammation of the joints? Check. Tremors in my extremities? Constantly. The chronic fatigue, the seizures, the short-term memory loss. The irregular heartbeat. The dizziness and rapidly declining eyesight. My sudden inability to concentrate. The ringing in my ears. The aching joints, the way my skin felt too sensitive to touch. The weight loss. The insomnia and increased anxiety. They were all there — but it didn’t take me long to find that they’d left one major repercussion of the disease off of the list: extreme difficulty with dating.

At the time , I’d been dating my then-boyfriend for almost two years. Unlike me, he wasn’t fazed by my diagnosis.

“You always think it’s something new and cling onto that,” he said. “I think you just need to take better care of yourself.”

The same words would come up again a few months later, when he dropped me off at the airport so that I could fly back to Syracuse, New York, where I was earning my master’s degree.

“Promise me you’ll take care of yourself?” he asked, before bending down to kiss me at the departures terminal.

“I’m trying,” I said.

By “take care” of yourself, he meant physically, but also risk-wise. He was very level-headed and reserved, where I was spontaneous. Perhaps he saw it as recklessness. I grew up camping and rafting. I’ve been SCUBA diving for the past decade. I’ve lived in other countries, slept in hostels with twenty other strangers, jumped out of planes on purpose, and ridden motorcycles. I have scars, but I have stories.

I was trying, though. But I’d lost so much weight that I’d accidentally carved deep pieces of my shin when trying to shave my legs. The circles under my eyes were dark and heavy. My morale was at an all-time low.

He couldn’t save me, and we both knew it; I didn’t know yet that in that moment we were saying goodbye. But it became clear a few nights later, over a phone call, that the mixture of long-distance hardships, my battle with Lyme disease, and other issues were going to spell out the end for us. He felt helpless to help me; I felt misunderstood and frustrated.

“I don’t think this relationship is worth pursuing anymore,” he said. I didn’t fight it. I agreed and hung up, unsure of whether this was actually the end, but determined to focus on my health and schoolwork.

Lyme disease and heartache, I found, have a lot in common. Both ebb and flow, some days barely crossing your mind, and others causing you to walk around like a raw nerve, totally exposed (if you can even get out of bed, that is). Some days, I caught myself checking out the good-looking guy that smiled at me in the hallway. Other days, I couldn’t imagine anyone else’s hands on my skin.

While the illness continued to wreak havoc inside of me, the makeup I wore left it a virtual secret to those who didn’t know me (shout out to my favorite blush, my contour palette, and a heavy dose of under eye concealer).

My amazing friends and sweet roommate rallied around me to make sure that I was okay, going out of their way to make me feel better and help me survive graduate school when I could barely move from my bed to the bathroom without aching. They continued to invite me to everything that they did, even when they knew that a “yes” meant “if I’m feeling okay,” and a “maybe” most likely meant “no.”

Though my answer when asked how I was doing was typically “tired,” I found that staying closed off in my room made me feel worse than pretending that I was okay.

Even though it fed into the whispers between some classmates that I was feigning Lyme disease for attention, or pretending to be sick to get extended deadlines or some other imaginary perks, I began to take advantage of my insomnia and took my friends up on their offers to go out and socialize some nights when I had the energy.

This is where I learned just how difficult dating with a chronic illness can be.

A good friend of mine joked that post-breakup, I fell in love with someone new every day. It wasn’t love for those men that I was feeling, but rather the freeing feeling of finally letting go of the love for my ex-boyfriend that I’d believed would last forever. I was lonely and the attention of an attractive stranger usually left me feeling better for a while.

But in the process of actually seeing new people, I quickly realized how much of a burden a chronic illness like Lyme disease could be to people that don’t already appreciate how great you are.

It sort of takes the “casual” out of casually seeing people when you have to take handfuls of pills at very specific times of day, such as at the bar, or at a restaurant on your first date. It also makes for an awkward text conversation when a presumptive guy you haven’t even been on a date with yet (let alone slept with) asks you (after too much time on Google, where discredited theories run amuck) whether Lyme disease is sexually transmitted. (The answer is no; there have been no credible scientific studies that suggest this).

My odd sleep schedule and routine of having to take about 30 different medications at all hours of the day and night made seeing and communicating with anyone regularly difficult. I couldn’t sleep in another person’s bed, because my insomnia lead to tossing and turning. I’d have to get up to take my 4 a.m. medications, and it would keep us both awake. My naps during the daytime meant hours where I was M.I.A. — something that was deemed sketchy by more than one guy who suggested that I was using my illness to avoid him.

Desperate for tips, I scoured the Internet for information about how to date with a chronic illness, but came up short. Most articles detailed how to date when you were in an actual relationship with someone. But I didn’t need to know how to keep my Lyme disease from making ~my man~ feel like he couldn’t tell me about his hard workday. I needed tips on how to have some semblance of a normal, casual, college dating life with it.

Some advice in forums and articles pointed toward my own attitude, saying that it was the culprit. If only I were happier about my chronic illness, maybe I could get a man to continue spending time with me instead of choosing another pretty, but healthy girl.

The thing is, I tried to be as casual about my illness as possible. No need to go on dinner dates, where my extremely restricted diet might become a topic of conversation. No complaining about how much my skin hurt and my bones ached when I woke up sober as a guy complained about a hangover. I didn’t want to burden anyone with it; so why did they make it into a burden? My attitude was purposefully cheery and upbeat, so what needed changing?

It took nine months of wondering, and trying to figure out when I’d know I was ready to move on, but I might have finally figured it out. I didn’t need tochange anything about myself. I just needed to change the types of guys I was spending time with.

Since becoming a free agent with a chronic illness, I’ve come across many “types” of guys, but just like dating while physically well, there isn’t always a litmus test to know who they truly are or what intentions they have until you get to know them. Luckily, my illness sped this process up.

There was the “are you better yet?” guy, who didn’t seem to own a dictionary with the word “chronic” in it.

The “but you’re too pretty to be sick” guy, whose failed compliments turned into failed attempts at getting laid.

The “might as well be my mom” guy, who seemed to think I’d fallen ill with a seasonal cold or flu, and needed to be treated with soup, cold medicine (?), and by driving me to class so I didn’t grow more sickly from being outside in the cold (at least he was nice).

There was the “medical student who should understand what chronic illness means” who still compared my being sick with how much harder his residency was.

And finally, there was the “friend zone” guy, who thought that getting involved with me would make him a bad person if we dated and it didn’t work out. He was my favorite, but potential incompatibility (if we couldn’t overcome it) wouldn’t have made him a bad person.

None of those types worked out, but I’m glad now, because it’s made me realize that my chronic illness was never a burden, but a blessing instead. It’s become a built-in barometer that I didn’t ask for, showing me who I should and shouldn’t spend my time, and more importantly, my energy with, since it’s so limited. One day, if I stand at an altar holding the hand of a man vowing to love me in sickness and in health, I’ll know it’s true, because he will have already seen me in sickness, and loved me anyway.

Recently, I reconnected with a guy that might just fall into a new category, something like “the one who gets it.” He hasn’t dealt with me at my worst yet, so I wouldn’t blame him if he decides later on that my illness is much more than he signed up for. But so far, my barometer says he checks out.

He texts me on the morning of my weekly I.V. treatments to tell me that he hopes they make me feel better. He’s as adventurous and spontaneous as I have always been, and understands my need for adventure; but when I’m tired, he doesn’t see my energy levels as a deal breaker. Instead, he makes monotonous things exciting with me.

He doesn’t think I’m lazy when I don’t leave the bed for days, and surprises me with flowers, or by offering to pick up my dog from the vet when he knows I don’t feel well enough. He reminds me to take my medicine when I forget, but he doesn’t interrupt me if I tell him a story for a second (or third) time, due to my short-term memory issues.

Recently, I asked him if he understood why some guys might have seen my chronic illness as a turnoff.

“I see how some guys could view this as a deal breaker, but they must be really shallow. This illness doesn’t define who you are, it makes you an even more unique person,” he said.

I made up excuses for all of the other “types” of guys, even before I got sick. After, it became easy to blame my own health since it was out of my control. If dating with Lyme disease has taught me anything, it’s that even when my health is out of my hands, my happiness is still dependent on me.

I wish it hadn’t taken a chronic illness to teach me what relationship behaviors are toxic, and what fights are worth fighting, but with any hope, one day I’ll be loved not in spite of my illness, but because of the strong, loyal, and independent woman it’s taught me to be.

WARNING If You Find These In Your Home Get To a Doctor IMMEDIATELY!

The Centers for Disease, Control and Prevention has just issued a warning about the latest health scare- the Triatomine bug usually called as the “kissing” bug, which can even kill a human.

Although the bug might seem completely safe and friendly, it isn’t because it transmits the dangerous Trypanosoma cruzi parasite. Once it enters the body, this parasite causes the extremely deadly Chagas disease, which has affected over eight million people on a global level.
Chagas disease can cause severe heart problems and can even have fatal end. The symptoms begin 2 months after the body had contact with the kissing bug. They include headaches, fever, muscle pain, enlarged lymph glands, and hard breathing. As you can see, the symptoms of Chagas disease are similar to those of flu, so it’s hard to recognize the real cause. The symptoms continue with swelling on the eyelids, or skin lesions.

About 30 percent of patients with this disease developed cardiac problems, while 10 percent reported to have problems with digestion. Although there are no vaccines for Chagas disease, if early diagnosed, the treatment is 100 percent effective. Use insecticide spray around your house to protect your family, and maintain regular personnel hygiene.

The disease has higher chances to be spread if the host rubs the bite, since the bug usually defecates into the bite infecting it with the dangerous parasite. Only the northern region of the U.S. isn’t at risk of this deadly bug, including New York State and new England.

Be careful of the following places:

  • Stony structures
  • Chicken coop
  • The rocks around the house
  • Dog cage

Recommendation

  • Seal each crack on the door, windows and wall of the house
  • Get rid of piles of stone and wood
  • Avoid puddles
  • Place your yard lights away from your home
  • Make sure your house stays clean
  • If you notice presence of kissing bugs, call the Department of Health immediately

8 Things Only People Fighting With Lyme Disease Understand

Lyme disease is the most common vector-born illness in the United States — and those who contract it can have a huge struggle to get back to health. Here are some important things to remember if someone you love is fighting this disease.

1. They Can Be In A Lot Of Pain

Pain in the muscles and joints — which is sometimes pretty severe — is a very common symptom of Lyme disease, and keeping that pain under control can be a real challenge.

This chronic pain can make it hard to go to work, clean the house, or do other basic activities of everyday life. And pain relievers, whether over-the-counter or by prescription, all have side effects ranging from stomach irritation to liver impairment to becoming dependent.

2. They Can Also Suffer From Severe Fatigue

Some patients with this condition report that during the middle of a flare-up, they can often be so tired that it is all they can do to get out of bed in the morning. Many have to rest throughout the day and this can make it difficult for work, school, and other important aspects of living.

3. They May Suffer From Anxiety and Depression

It is very common for those with Lyme disease to suffer from problems with anxiety and depression. This is not just because of the pain and fatigue this disease brings. It is also because the kind of bacteria that causes Lyme disease, known as a spirochete, can settle in the brain and cause these mental problems.

4. They Have Ups And Downs

One of the difficult aspects of Lyme disease is that it can flare up then settle into a period of remission. In other words, people will get better and actually feel good for months or weeks on end and think they have finally gotten over the disease, only to be hit with another bout of pain and fatigue. For many people, this is one of the most frustrating aspects of this disease.

5. They Can Feel Isolated Or Lonely

Because of the nature of this disease, people who have it can have a hard time explaining their symptoms to others. And, because they do not alwayslook sick, they find that sometimes other people think they are faking it or are not as ill as they really are. This can lead those with Lyme disease to feel lonely or to withdraw from others. This feeling of isolation is another difficult thing to cope with — and it can make the depression and other emotional issues worse.

6. They Are Often Misdiagnosed

Lyme disease can carry with it over 100 different signs and symptoms, some of which can easily be mistaken for other illnesses or conditions — and many doctors simply do not know enough about this disease to diagnose it easily. This is why many people often get a wrong diagnosis, which can delay the treatment that they need so badly. This can also cause their health to deteriorate, since they are not being treated for the disease itself.

7. They Must Go Through A Long Treatment Process

Even once Lyme disease is diagnosed, that is only the beginning. The treatment process can take months and months of antibiotic therapy to complete, and that is not the only aspect of the treatment.

Those fighting this condition must also eat healthy, try to stay active, rest, and take supplements in order to work their way back to being healthy. And if this disease does go untreated, people who have it can feel its affects for a lifetime.

8. They Run The Risk Of Fatal Complications

Although this fortunately is rare, Lyme disease can sometimes be fatal if the spirochete invades the heart and causes a heart block. It is not a common complication, but one which can cause a great deal of anxiety nonetheless.

In short, although Lyme disease is only rarely fatal, it can cause significant emotional and physical problems and have a significant (and negative) impact on the lives of those who have it. Good emotional support from family and friends is important to get through this difficult condition.

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Lyme: The Infectious Disease Equivalent of Cancer, Says Top Duke Oncologist

Last week, I mentioned the case of Dr. Neil Spector, whose long-undiagnosed Lyme Disease resulted in irreversible heart failure and ultimately, a heart transplant. Dr. Spector, author of Gone in a Heartbeat: A Physician’s Search for True Healing, is the Sandra Coates Associate Professor of Medicine and Associate Professor of Pharmacology and Cancer Biology at Duke University School of Medicine. As the Director of Developmental Therapeutics at the Duke Cancer Institute, he’s a leader in applying translational research to the clinical development of molecularly targeted personalized cancer therapies.

Here, Dr. Spector shares his story, explains what Lyme and cancer have in common (hint: a LOT), and encourages us with his vision for the future.

Like so many of us, your Lyme was missed by multiple physicians. What were your symptoms?

I don’t recall a tick bite, but I first started having symptoms in 1993, mostly cardiac arrhythmias. I had unprovoked palpitations that lasted fifteen to twenty seconds. There was something ominous about the way they felt and came on, but they were never captured because by the time I got to the ER, they’d resolve. And because I had just moved to a new state and was extremely busy with my career, the easy diagnosis was that I was just stressed. Doctors were saying I looked and seemed fine, but I wasn’t.

I also had an early episode of brain fog that came on out of the blue. I gave a lecture at University of Miami School of Medicine for an hour, and afterward, I had zero recollection of anything I’d just said. It felt like I’d taken a hundred Benadryl. The feeling lasted for three weeks and then spontaneously lifted. Then in 1996, I developed arthritis in my wrist—it was really sudden and severe. I couldn’t hold utensils or do anything with my hands. I was put on doxycycline for an independent reason that had nothing to do with Lyme, and within twenty-four hours, the arthritis completely resolved. That’s when I felt I definitely had Lyme. At this time, my arrhythmias were getting worse and more complex. I was extremely fatigued, had burning in my heels, and night terrors.

The night terrors and burning in your heels sound like classic Bartonella.
They do. The weirder my symptoms became, the harder it was for my physicians to piece together. I didn’t have my first Lyme test until four years after my first arrhythmia.

Wow. And how many did you have until it came back positive?

I had three at a major lab that were considered negative. Then I found a greatILADS doctor from North Jersey and she ordered the fourth test and sent it to a lab called IGeneX. That test was positive.

How many doctors did you see before you found your Lyme-literate doctor?
I had about five ER visits with my heart issues. I saw a cardiologist and my internist, who is very caring and really tried to help. Then I went to a rheumatologist who ran a whole auto-immune panel—Lupus, Sjogren’s, you name it.

Did the Rheumatologist test you for Lyme?

No, he didn’t.

Wow, that’s mind-blowing.

Yeah, it is.

Do you feel that ruling out Lyme should be imperative before diagnosing a patient with an auto-immune disease like MS, Fibromyalgia, or Rheumatoid Arthritis?

Absolutely! And Alzheimer’s. Something has to trigger an autoimmune disease. It doesn’t matter if this occurs in one percent or seventy-eight percent of the patient population—to allow people to go down a path of progressive neurodegeneration when they could be treated is unconscionable.

You have famously compared cancer to Lyme. What are their similarities?

To me, Lyme is the infectious disease equivalent of cancer. We don’t talk about cancer as just one disease anymore, and we should stop talking about Lyme this way. There are so many strains and co-infections. When you’re bitten by a tick, you can get five or ten different infections at the same time.

I also find it ludicrous to call all tick-borne disease, Lyme Disease. In breast cancer, we don’t just say, “You have breast cancer,” because that simply doesn’t mean anything anymore. The language is important because it has a bearing on treatment.

With cancer, we know that administering one algorithmic form of treatment doesn’t work. You have to understand the wiring that drives those tumors—the nuances, the mutations—and target them specifically. I think we need to start thinking this way about Lyme. 2016-02-16-1455650880-5214064-IMG_1161.JPG(Photo credit: Dr. Neil Spector)

What else?
I also think it’s ridiculous that nobody in the mainstream Lyme research world has given too much thought to the whole resistance issue. In cancer, it’s been known for decades. We are always trying to figure out how tumor cells evade the immune system or resist chemotherapy, so the fact that persisters are such a new phenomenon to them, is shocking. Why wouldn’t this bacteria figure out how to evade the immune system and antibiotic therapy? We already know this is true for syphilis; they’re sister diseases.

We need to understand the molecular biology of the bacteria, too. Part of the whole metastatic infectious nature of Lyme is the changing of shapes—the classic screwdriver verses the cystic form—and cancer cells are the same way. They change shapes and become less sensitive to chemo; they become more aggressive, mobile, and invasive. And so in cancer, we aim to target the new shape to our therapeutic advantage.

We also need to think out of the box with treatments, the way we have with cancer. I feel there’s too much reliance on antibiotics. Antibiotics will be the mainstay, like chemo is in cancer, but we need more targeted therapies. There’s very good animal data from the Lyme literature suggesting why some strains end up in the heart verses joints verses brain. Those are not random events, just like they’re not in cancer. It’s not karma or bad luck. There are biological reasons for this. It’s important to understand that because there may be ways to block it, and the answer may not be antibiotic-based.

You’ve talked about how both Lyme and cancer feed on sugar, as well.

Yes. Their metabolic requirements are very similar. In cancer, we have taken advantage of that by trying to develop treatment strategies to starve people of carbohydrates for several days and then treat them with glucose pneumatics that look like glucose but aren’t, and so are taken up by tumors and essentially kill the tumor’s metabolic pathways.

Interesting. Could that work for Lyme?

It could, potentially. I think we should at least start testing in laboratory models to consider whether this works for Lyme. I don’t know that it would be a standalone treatment, but maybe it sensitizes the bacteria and makes them more susceptible to antibiotics.

What’s your take on the recent study linking Lyme Disease to glioblastoma, the deadly brain cancer that took the life of VP Joe Biden’s son, Beau.

Throughout the years, there’ve been a lot of links made between infectious agents and cancer. For anyone who says it’s impossible, I’d ask, who would have ever thought thirty years ago that H. Pylori was the causative agent for stomach cancer? Or that HPV virus can cause cervical and head and neck cancers? Or that Epstein Barr can cause lymphoma? So it is not far-fetched to say that a bacteria that causes inflammation can cause the perfect storm for developing a tumor.

I think to say Lyme is causative for glioblastoma will require more studies, but I think it’s interesting. There should be money available to do this research to determine the link, and if it is determined to be the cause, then as with H. Pylori, we should be treating aggressively with anti-borrelia treatment.

It seems like oncologists would have the right kind of thinking to unravel some of these mysteries.
Absolutely.

What other areas of medicine should we be pooling from?

I would start with cancer biologists and basic immunologists. They figured out the immune system is not recognizing tumor cells and killing them because these cells have hijacked and usurped a normal response in the body that shuts down the immune system to their advantage. Once this was discovered, we saw a transformational change in the treatment of cancer where people with metastatic melanoma are now going into remission and living years cancer-free, whereas it was a death sentence 5 years ago.

You have to ask yourself, if you have this persistent inflammation from Lyme that isn’t eradicated, is this putting the brakes on the immune system.

What do you make of the fact that animal studies in this field are virtually ignored, when they are given so much credence in other areas of medicine?
If we threw out animal studies in cancer, we’d be nowhere. So I don’t quite understand the distinction here. If we say we see persistent infections in dogs, and we also see the same in humans, what’s the relationship there? It seems scientifically ignorant that in the other ninety-nine percent of science, outside of Lyme, people are very willing to accept data that comes from animals. Not as the Holy Grail, but it does provide valuable information. It helps you to figure out what to more insightfully study in humans.

A lot of existing Lyme research has involved population studies using western blots, which are lousy, antiquated tests. And that’s what a lot of “name” researchers consider valuable! It’s not valuable research in my mind or in the minds of a lot of scientists. When I speak to eminent cancer biologists or world-class immunologists, they don’t get why people are hanging on to 1950s research.

Thankfully, there are scientists from outside the Lyme field who have gotten into it because they see a tremendous need. They are lending remarkable insight that will lead to the next breakthrough. The more people we bring in who haven’t drunk the Kool-Aid, the faster we’ll turn this around.

Dogmatic thinking doesn’t belong in medicine.

Is there hope to eliminate these infections completely?
Absolutely. I think so. If we can take people with metastatic cancers who had 6 months to live, and we can eradicate their cancers, I find it really hard to believe we can’t eradicate Lyme.

What do you say to people who are in the black hole and fear they’ll never get better?

I tell them we’ve only just begun to fight and to hang in there. I tell them what I tell my cancer patients- to do what you can to stay healthy because better treatments are just around the corner. I honestly believe that, because we are going to repudiate the dogmatic approach that has led to a lot of suffering.

And I know how hard it is when you’re suffering to see any light and to not know how you’ll get through another moment, but many of us have been there and there will be better times ahea