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Are Coinfections Making Your Lyme Treatment Harder?

When I was doing the research for my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I was unaware that a tick can transmit additional diseases known as coinfections. Coupled with Lyme disease, the coinfections can make managing a person’s health very challenging to say the least.

On the Love, Hope, Lyme podcast, GLA CEO Laura MacNeill discussed the coinfections and the difficulties in managing them. We discussed the work GLA is doing to improve treatment, diagnostics, and patient care for those who have these diseases, most commonly Bartonella and Babesiosis.

“You can get multiple coinfections from one tick bite, or you might get several bites. I’ve heard stories from people who have encountered tick nests, and they find hundreds of them at once. You need to be aware that these coinfections are not going to all have a bullseye rash, which is sometimes a key sign that you have been bitten by a tick. It’s going to be a very complex treatment process for you to go back to health if you have multiple things happening at once,” she said.

The two most common coinfections are Bartonella and Babesiosis. Unlike the bacteria borrelia burgdorferi that causes Lyme disease, these two are caused by parasites that also are transferred from a tick bite.

“This parasite destroys your red blood cells and leads to symptoms such as air hunger, which is the need to take a deep breath all the time. You can have lightheadedness and feel weak. Other common symptoms are high fever, night sweats, headaches, chills, and maybe even hypoglycemia,” she said. “You’re very sick if you’ve been infected with Babesiosis, especially in the later stage of that parasite infection.”

The challenge in treating these parasitic coinfections has led to GLA funding specific research for treatment.

“Antimicrobial drugs are used for treatment and are often administered in conjunction with homeopathic remedies. They can have some severe side effects. There’s a risk of drug resistance that can be developed, and they may or may not completely eradicate the full parasite,” she said.

To discover better treatment approaches, MacNeill said that GLA is supporting Dr. Choukri Ben Mamoun at Yale in his research.

“It’s a dual therapy approach. What his study highlighted that if you put two different drugs together, the antimalarials tafenoquine and atovaquone, to treat Babesiosis in mice, they have the potential for not only a complete cure, but they show immune protection against reinfection of the Babesia parasite. He’s been able to show that in mice, but then outside of a human host, just in the lab, he’s been able to show that this combination effectively kills three diverse Babesia species. It’s very exciting,” she exclaimed.

“This is very promising, but it doesn’t work for everybody. We need more research and more resources around this work so that we can further the research into clinical trials and continue to resolidify these amazing results he’s had in mice,” she said.

“Bartonella is a stealthy pathogen with a very slow growth period, which gives it the ability to evade detection for a very long time,” she said. “This can cause a range of symptoms including high fever, enlarged lymph nodes, to severe chronic illness that can infect multiple organ systems.”

“Plus, there’s also neuropsychiatric implications with Bartonella as the infection can get into your central nervous system. Testing can become very challenging, and you can have a lot of false negatives with Bartonella,” she said.

“If you think that this might be something you’re exposed to, you must be your own advocate to continue to get testing. Unfortunately, right now, the only good test we have is just going to be looking for it in your bloodstream,” she said.

“We need to have a better diagnostic for Bartonella, so we recently initiated funding for what we’re calling the Bartonella Discovery Project. The study aims to unveil these various hiding spots within the body, including the heart tissue, tissue in the brain, and find if bartonella is inside the cells or is it outside of the cells, or is it in the biofilms within those tissues? They are taking a deep look at where it is when it’s inside the tissues and not in the bloodstream, so we can better understand and find it,” she said.

MacNeill said this research is being done with Dr. Monica Embers at Tulane University, a specialist in Borrelia burgdorferi and Lyme disease.

“She’s evaluating antibiotic efficacy against Lyme disease, identifying treatments to eradicate Lyme disease and other infections, and looking at infections and looking for a cure for all of this. Over the years, she’s expanded her research to include Bartonellosis.”

MacNeill said, “You must have the resources available for scientists to even begin setting up a lab and setting aside a couple of years of their professional life to look at this. The GLA is providing those resources so that the scientists can choose Lyme disease and Babesia work. For GLA, that only happens through generous donors. We’re fully funded by the generosity of individual, corporate, and family foundations. Every gift that’s given helps us say yes to projects like Choukri’s, which is making a huge difference.”

“So many people are sick right now, and they can’t quite clear it with the current treatment. We’re talking 10s to 20s millions of dollars to be able to get it from what we know now, to get it to a clinical practice where you walk in your MD’s office and they say, “Here’s your combination therapy. You’re going to be just fine.”

“We continue to push forward our mission so that we can get these drug therapies to the doctor’s office with great understanding, so Lyme survivors don’t have to worry about it anymore,” she concluded.#

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Can Nature Help You Heal?

When I was researching my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I had no idea how traumatizing being out in nature could be for some persistent Lyme disease survivors. Even seeing a deer on the side of the road could be triggering.

But I met some people who have attributed embracing the nature they once loved as helpful in healing while still maintaining tick prevention habits. One such person, marine scientist Alayna Bellquist, discussed on my Love, Hope, Lyme podcast how she was able to reduce her Lyme anxieties and challenges by fully embracing her love for the sea and horseback riding as critical to her recovery.

Are you comfortable being back in nature like she is?#LymeDisease #Babesiosis

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In a Blur

I finally had a couple days where I felt like I had some energy. But then a few days ago, exactly a year after I hurt my neck which started a terrible cascade of worsening symptoms, when I started to feel some relief of all the rehab and physical therapy, when I finally started to feel a bit like myself, I hurt my shoulder and neck again when accidentally I slipped while stretching. It feels potentially worse than a year ago. Its weak and painful and it even hurts to type and work on the computer, which is kind of necessary for my new idea of doing online tutoring, which is one of the things that was giving me some energy this past week. Im terrified of reliving this nightmare that wasn’t even close to being over before this most recent injury; its like I just restarted it. Doesn’t help that last night I had more nightmares involving my ex.

In a Blur

I’m in a blur.

As I stir, minds jumbled, a ringing whirs.

The pain in my neck and my shoulder it hurts.

I pray for a cure, for some hope to spur, to again feel pure.

But dark thoughts, they lure.

I fight the current, grit my teeth, growl 'gerr'.

Even in day the dreams of my allure for her reoccur.

Stuck in my head like a burr.

Please Sir, turn things back as they were, take away this hurt, you have the power.

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia

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Want to say good riddence but can't

What do you do when someone tells you over and over again that they will do anything for you, but when you finally muster the will to ask for help (only because you have no energy or ability to do a necessary task), they refuse or make it seem like such a burden? From my perspective im giving my parents an opportunity to help and feel like they are alleviating a tiny bit of my suffering, and show me that they truly care, and gain the slightest bit of trust back. But they just do opposite! I dont get why they cant just say okay and do one tiny super simple straightforward thing that is trivial for them but impossible and necessary for me. Even when they do try to help, they have to do it in their own way which is always counter to what i asked for. The more this happens, the more i realize this disgusting and emotionally abusive pattern has been going on my whole life. They are suffocating me and imprisoning me and will not even support me when I clearly communicate exactly what i need. I need to be free of them but i have nowhere to go and no options, besides moving into my tiny car and being homeless (again) which is just not possible in my physical (or financial) state. What do you do when the only people you have left are just repeatedly hurting you more despite you begging for help, but you cant just cut ties and say good riddance?

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia

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Vile Thoughts

Vile Thoughts

These vile thoughts reek

Mumbles I speak

Curses no bleeps

Head ringing beep

I am dead meat

Cowering so meek

Please hear this feat

Can’t stand on two feet

Stomped by a cleat

Poisoned with deet

Burning like peat

Shivers in heat

Head under deep

Breathing through reed

I’m up late can’t sleep

Stop this I plead

Whining I bleat

Still counting sheep

Don’t say a peep

Sneaking I creep

Secrets I keep

Mind’s chaos not neat

Thoughts quickly fleet

Struggle to read

Friends I don’t greet

Home in the street

Bathe in the creek

Hope someone sees

How broken in need

I am indeed

Future seems bleak

How to redeem

Must take a leap

Got to believe

Someone hears me

He answers with tears

Or is that fear

Murky not clear

Ringing in ears

Lyme it appears

Now scared of deer

They are so dear

But harbor tick’s spear

Stinger of drear

Vacuum of cheer

Silent can’t hear

Wasted career

Life’s in the rear

Swerved off I veered

No control can’t steer

Stuck in first gear

Going on years

Feeling so mere

Can’t take a jeer

Please don’t come near

Suspect of peers

And who’s in the mirror

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia

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Another Doctor

I wrote this poem a month ago after my first appointment with my lyme doctor. I just had my second appointment and basically feel the same way: though I’ve at least started treatment, being healed and feeling like myself again is still a world away, and I’m really struggling to keep my head above water while spinning my wheels.

Another Doctor

Another doctor today.

At least this one didn’t shoo me away.

Too much I had to pay, but at least she didn’t say it’s all okay and that I’m cray cray.

But I’m still stuck in the mud and its hardening to clay.

Thought I would see sunshine but it’s just darkness, no rays.

Awake I lay staring out at the grey.

Been sick for a year and a half come May, and so far it seems sick I will stay.

My doctor says nay, that I’ll get better one day.

But it’s a long way away ‘till once again I feel gay.

It's just the start of my foray and for now I’m still frayed and afraid.

Still falling apart, still unable to play, please let me get better I pray.

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness

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What Is a Hummingbird?

In celebration of FINALLY submitting my PHD thesis, and of seeing my first hummer of the year, I thought I would post my favorite and by far the most meaningful poem I’ve ever written. A brief backstory: A few days before my defense, the nerves and stress were starting to boil, compounded by my worsening physical condition. I knew I knew my stuff, but still I had lots of preparation for my defense to go. But that evening, instead of frantically rereading hundreds of papers and my thesis or tidying up my presentation, I sat down at my computer and just started writing. I don’t remember why or even having the idea of writing a poem about my research, it just happened. From the first few words I had tingles down my spine and tears welling up (even writing this now, those tingles and tears come back, as they do every time I read this poem). I didn’t even feel like I was really writing- the lines were just pouring out effortlessly. It literally felt like I was transcribing my spirit. The only difficult part was seeing my computer screen through my tears, and controlling my laughter, joy, and utter disbelief of what was coming out of my fingertips. I don’t have the energy to fully describe how truly important this poem is to me, but suffice it to say that whenever I have doubts or regrets about spending 8+ years in the prime of my life studying these magnificent and mysterious creatures, this poem reminds me that it was (and is) ALL worth it, and that there really is something more to this universe than what we can touch and see :).

What Is a Hummingbird?

“ What is a fish? ”, my labmate asked me.

“ Don’t know what you mean ”

“ Then what is a hummingbird? ”

I smiled with glee…

A hummingbird’s a bird, a hovering bird.

It zips in the trees, and flits with the bees.

From flowers it drinks, “ where’s my next meal ”, all it thinks.

Sweet nectar dew, plus an insect or two, but at night, can’t find food.

In the day, so mean and lean to impress all the ladies with sheen.

At night, hidden in the green, unseen, no longer a sugar fiend.

Its fuel source must turn, now fat, it must burn.

And when that is done, torpor’s begun.

Fast asleep? or something deeper? We won’t know without a seeker.

An observer of sorts, a scientist of creatures; and today his research features…

A few insights, some questions, and many honorable mentions,

The whens and the whys, the ins and the outs,

Of a magnificent feat from those without feet.

Still, she becomes, and begins to succumb,

To the cool dry air, one last dream of morning sun.

Her metabolism plumets, body temperature drops.

Her fat’s at a level where she will go plop!

IF, she stayed warm, but her threshold did warn:

“ Use torpor,” it said, “ or we will be dead! ”

So torpor she did and torpid she stayed, until just before that morning sun came,

And oh how much fat she did save!

Now I could end there, but that’s not quite all,

I could go for hours, so I hope you’re enthralled.

But believe it or not, it does get more interesting.

So if you’ll stick around, I’ll reveal you the mystery,

Of how hummingbirds do it, torpor that is,

It’s not that simple, there’s a lot people miss.

It’s not every night, like the routine theory says.

Only when needed- emergencies, instead.

If former were fact, they might be too fat,

For a particular season, like midsummer breeding.

That’s when they stay light, fighting for survival at night.

Agility, that brings them, territories and fiefdoms,

That hold the best nectars and nest sites near raptors.

What about nesting, and does torpor impair resting?

For sure the former, likely the latter, and the immune system might also stagger.

Brooding moms avoid it, developing juveniles too.

And, not to mention molting birds, slower feathers would renew.

That happens in winter, after the ruby-throated glinter,

Takes flight to the skies, over oceans it flies.

The Gulf, to be exact, but we’re not sure that’s fact.

To Mexico it goes, and even flying by coast, high fat stores it must boast.

And during that time, when fatness is prime,

Torpor becomes crucial, to save fuel it is useful.

And so a cycle it remains,

Summer, Fall, Winter, back north with Spring rains.

Body mass always changing, torpor always sparing,

that valuable fat, whether short-term or long faring.

But how does it switch?

Is it a flip and a ditch?

Or a dial with a seasonal style?

We’re not quite sure, the latter I suspect.

The flexible fat threshold hypothesis, we must test.

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #biology #hummingbirds #PhD

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Don’t Want to Get Out of Bed

It was so hard to get out of bed this morning…

I wrote this poem a month ago but today I woke up with it stuck in my head.

Don’t Want to Get Out of Bed

I don’t want to get out of bed.

My head is ringing and inside I feel dead.

I want to sleep and dream, to let my brain to mend.

But instead I lay here reeling from nightmares of my ex-girlfriend.

In pain I lay as I replay all my mistakes of the previous day, regretting everything that I said.

My life has turned upend, shriveled to shreds, filled with dread.

Will I get better? Don't think I would bet. Maybe, but not just yet.

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness #Insomnia

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Not Okay

Is it just me or does anyone else absolutely hate when people say "I hope you’re feeling better"? No I’m not feeling better! If I were you would know!

The worst is when my dad asks me nearly every morning "how are you feeling today?" in a nice cheery voice. In my head: “ ARE YOU BLIND? IM PRACTICALLY CRAWLING ACROSS THE FLOOR TO GET MY FIRST CUP OF TEA AT 2PM HOW DOES IT LOOK LIKE I’M FEELING!?! ” And somehow when I muster all of my energy to mutter "how does it look", I'm the bad guy.

I know they all mean well, and that my anger towards them is misplaced and inappropriate, but I cant help but being overcome with frustration, loneliness, and hopelessness when I hear things like that.

I wrote this poem a few weeks ago, but it’s very fitting for how I am feeling today.

Not Okay

I am trapped in my room like a prisoner.

I am in constant pain and it’s getting worse.

I am alone and cowering.

I am confused and lost.

I am overwhelmed utterly.

I am dying and I can’t heal.

I am begging for help.

I am wishing the hurt wasn’t real.

I am doing all I can but it isn’t enough.

I am not okay.

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #MentalIllness

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Two Steps Back

I’m having a rough day. I asked my parents to not be home for my tele-therapy appointment today, and they totally ignored that request. This happened the last three weeks as well, and in each instance, after realizing they were still home at the start of my appointment, I blew up into a rage and panic attack. It’s such a simple and clear request that they will not respect, and it just devastates me that I can not have the slightest bit of trust in my parents who repeatedly claim they will do anything for me. It’s especially frustrating because the last couple days I was actually making really good progress getting out of the hole and slowly working up to being around them without shutting down and becoming enraged. Anyway, to try to minimize the extent of this attack, I wrote this poem (and just to be clear, my parents do not (currently) physically abuse me, i.e. the slap is metaphorical).

Two steps back

One step forward, two steps back.

Today from my parents, I felt a slap.

In my face I was whacked, but ‘twas silent attack.

Satan thundered as my voice clapped back.

Panic ensued and soon I was consumed by the fumes.

As I withdrew, I ballooned. I cried and I mewed, shook, let tears spew.

It might be days before I resume digging to exhume this mind so strewn.

‘Till then I’m doomed to dinners of canned beef stew hidden in my room.

I thought those two grew, from the plans that I drew, to explain the truth and commune on why I’m so blue.

But it was all a rouse. They’re still just confused and don’t see the truth; say they understand, but still treat me like poo.

Now where to? I’m stuck in a brood and lost in this mood. How to get out of this loop?

I think to renew, I’ll let loose the muse and find a new support crew.

Away I will hack, at this problem, must act. I’ll start from scratch to get back on track.

Can only trust me to avoid another lap another zap, cuz they don’t know jack, and won’t listen to fact.

I’ll dull how I react, but not let the plaque stack. If I can do that, I deserve a plaque.

First must remove this tack and mend my skin’s cracks; then straighten my cap, fasten my strap, and stick to my map.

#LymeDisease #ChronicLymeDisease #Babesiosis #Bartonella #Anxiety #Depression #PanicAttacks #Loneliness #MightyPoets #ChronicIllness #Poetry #Insomnia

10 reactions 3 comments