A tick bite that she doesn’t even remember has all but ruined 31-year-old Laura MacLeod’s life.
She has likely had Lyme disease since she was a child, but it wasn’t until she was a young professional and suddenly suffering from a confusing but life-altering set of symptoms: debilitating fatigue, brain fog, aches, pains and even seizures.
But that one answer was the beginning of a continually frustrating search for something, anything, to bring Laura relief.
She has tried everything from bee stings to injections of ozone, but Laura’s body just keeps deteriorating further and further.
Her next hope is to fly to Germany for the most dangerous treatment yet, because, here in the US, many health officials and doctors deny that the chronic Lyme could be the cause of Laura’s symptoms.
Laura MacLeod, 31, has been in and out of hospitals for everything from seizures to cognitive symptoms and a life-threatening antibiotic resistant infection. She has Lyme disease, but every treatment she has tried has failed, leaving her desperate and trying unproven protocols
Before her diagnosis, Laura was a fit and active woman, frequently surfing in California or around the world as part of her many travels
CONTROVERSY OVER CHRONIC LYME: NO COUNTRIES WILL RECOGNIZE IT – BUT EUROPE IS SOFTENING ITS STANCE
Lyme disease is present in ticks in much of North America (including the US and Canada), Europe (more prominently eastern and central than western) and northern Asia, though forms from different places are not identical.
Chronic Lyme disease is not officially recognized.
But countries like France, Canada, Switzerland and Germany have taken a more proactive stance on the disease than the US has.
‘Really, the controversy stems from the unknowns’ about the disease, says Tulane University Lyme researcher Dr Monica Morici-Embers.
‘If we had some answers and we could prove this, that or the other, it wouldn’t be controversial, but we can’t and the disease is not simple.’
As Lyme disease becomes more common around the world, France and Canada have created national plans to address tick-borne disease including Lyme.
The US sees at least as many cases of Lyme each year as either country does.
French researchers are looking into how tick bites themselves may lead to chronic illness.
Meanwhile in the US, much research in the US focuses on the basics of the ticks that carry it and how the infection is transmitted.
There are a handful of clinics that specialize in Lyme in the US as well as in other countries.
A German clinic using hyperthermia – heating of the whole body – to treat Lyme has gained notoriety after several people claimed it cured them.
The treatment is offered by at least one US clinic as well, but is only FDA approved for treating certain cancers and considered dangerous.
On social media, Laura appears alternately in photos as vibrant and adventurous and deathly ill.
In most images, she’s globe-trotting or grinning in the middle of a crowd of friends.
But in others, she’s in a hospital bed, nearly obscured by wires, tubes and machines monitoring her precarious health.
This is what chronic Lyme disease looks like.
Its network of possible symptoms are so far-flung and variable from person-to-person that trying to treat them is like playing whack-a-mole.
The only proven treatment for Lyme disease itself is a course of antibiotics that eradicates the infection. But it only works if it’s administered in the early stages of the disease.
That was hardly the situation for Laura.
‘I think I’ve had Lyme since I was a kid. I went to high school in Connecticut and I think it started then because I was sick, but not sick enough to really make a big deal of it. I was just a sick kid,’ Laura says.
Fast-forward to her adulthood, and suddenly Laura’s eyelashes had all fallen out. Her body was mottled with rashes, she could hardly keep food down and was seizing regularly.
‘I saw specialists in neurology, chiropractors, orthopedists, everyone I could think of, but they didn’t know what to do. No one really had any suggestions and no one could find anything clearly wrong,’ she says.
An orthopedic surgeon, with no other answers suggested exploratory neck surgery to find an unknown unknown.
Desperate though she was, that was a step too far for Laura.
Like many other doctors she’d seen, the orthopedic surgeon suggested that if there wasn’t a problem showing up on less invasive tests, Laura’s issue might be more mental than physical.
She opted to see a psychologist, in the hopes that perhaps her wide array of symptoms might be stress-related.
She has been an avid hiker and camper. The dry air of the desert brings Laura some relief, but she says she should currently be on bed rest
‘I thought I must just be stressed out and this is all in my head, I’m just not adjusting well’ to her new busy life working in advertising in New York.
‘I spent almost two years in therapy before the doctor was like, “I think you’re just really sick,”‘ Laura recalls.
Specialists of every other kind told Laura her problem must be mental, and her mental health provider told her it must be physical.
Laura was sick, and stuck without any answers. It would take her to work out why.
‘I WOULD GET LOST ALL THE TIME’: LYME DISEASE ‘HIDES’ FROM DIAGNOSTIC TESTS AND TREATMENTS – MAKING LAURA FEEL LIKE SHE WAS GOING CRAZY
Lyme is a sneaky disease.
The bacteria that causes it ‘hides,’ as Tulane University bacteriology and parasitology professor Dr Monica Morici-Embers explains.
This makes it both hard to test for and to treat, and is part of the reason that one person’s symptoms of Lyme disease can be wildly different from another’s.
‘It doesn’t stay in the blood very long after the tick feeds,’ she says, ‘it gets disseminated throughout the body through the bloodstream and hides in collagenous tissues, like the heart and even the brain, [and then] it is no longer detectable,’ Dr Morici-Embers says.
For Laura, the mysterious changes to her brain were among the most agonizing symptoms.
‘I had these cognitive symptoms – I used to organize large amounts of information for a living, but I was having trouble reading simple guidelines and communicating. I couldn’t think of the right words, I would get lost all the time,’ Laura says.
‘I would be trying to bring my keys out to my car, and realize I was holding, like, my dog.’
Not everyone with Lyme has these cognitive symptoms, and not all cognitive symptoms indicate Lyme – but they can.
Laura’s Lyme disease began to really affect her life while she was working in advertising in New York. At first, she first blamed the stress of her high pressure job – then she had a seizure
When other specialists couldn’t diagnose her, Laura decided to try therapy to help her ‘adjust’ to life in New York. After nearly two years, the therapist said ‘maybe you’re just really sick’
The Centers for Disease Control and Prevention says that Lyme can cause brain tissue swelling – also known as encephalitis – but that this is uncommon.
Patients who do have this rare complication may be sleepy or lethargic, moody or confused. Some have marked personality or behavioral changes, cognitive changes, even hallucinations or seizures.
Laura had all of the above, plus periodic rashes stretching across her chest and neck, aches and pains everywhere from her jaw to her joints, and she kept vomiting.
A bullseye rash is the most common, typically the first, and certainly most clear identifier of Lyme disease, but from there the condition’s effects become unpredictable.
Dr Morici-Embers, who studies Lyme in animals, says that this unpredictability needs to be recognized as part of the nature of the disease – not a reason to deny its existence.
‘I’ve seen what the infection looks like in animal models, I’ve seen inflammation in and around the peripheral nerves, which would cause any number of symptoms,’ she explains.
‘Not every animal will have the same set of signs in their tissues of infection and some will have moderate-level inflammation in areas where it can cause potentially complex symptoms.’
Depending on the region of the US, different species of tick carry Lyme disease. But cases are relatively rare outside of the Northeast.
Yet when Laura did some online digging, it kept bringing her back to Lyme – it seemed to her the closest fit to what she was experiencing.
THE ONLY APPROVED TREATMENT FOR LYME FAILED FOR LAURA. SO SHE TURNED TO FAMED BUT CONTROVERSIAL DOCTORS
Back in California, where she had grown up and returned when her health began to deteriorate, Laura’s new doctor was skeptical when her patient came to her armed with a litany of WebMD research on a disease
‘I asked her to test me [for Lyme], but she said, ‘no, there’s none on the West Coast, it’s expensive and I don’t want to put your insurance through it,’ Laura says.
Ultimately, the doctor agreed, and tested Laura’s blood for antibodies that would indicate Lyme in January 2016.
The test was positive.
‘She called back and said, “I can’t believe it,” and I said, “yeah, well, I can,”‘ Laura recalls.
Laura was prescribed the standard treatment – a two- to three-week course of antibiotics, typically doxycycline, amoxicillin or cefuroxime axetil – but she only felt worse.
‘I went back to work, but I was just getting worse and worse and worse,’ she says.
After many specialists and years of knowing something what wrong – but not what – Laura finally convinced a doctor to test her for Lyme, and was diagnosed in January 2016 (pictured)
Doctors started Laura on the standard course of antibiotics to treat Lyme in 2016, but the drugs only work if they are used early on after infection. Laura only got worse after treatment
Things came to a head in June 2016, when Laura was laid off after suffering a seizure while giving a presentation to Instagram.
Strapped with massive medical bills but no closer to relief from the increasingly debilitating symptoms of her Lyme disease, Laura moved back in with her parents.
‘I tried to tough it out in LA for a while, and everything [about her illness] was very hush-hush and secret,’ but life was becoming unbearable.
Laura eventually linked up with Dr David Kaufman – the same specialist featured in the controversial Netflix docu-series, Afflicted, about people with mysterious chronic illnesses – who said that Laura had a variation of Lyme disease that is chronic.
Chronic Lyme is not recognized by the Centers for Disease Control and Prevention (CDC), which instead describes long-lasting symptoms like Laura’s as ‘post-treatment Lyme disease Syndrome.’
The CDC even warns against the dangers of trying to treat persistent Lyme symptoms with long courses of antibiotics or other alternative therapies.
And the concept of chronic Lyme is approached with similar skepticism by the medical community at large.
But Dr Kaufman – and a small subset of practitioners, licensed and unlicensed, legitimate and fraudulent – disagree.
These doctors and the patients who seek their help, like Laura, have been pushed to the fringes of the medical world, and ‘alternative’ therapies for Lyme are not approved by the Food and Drug Administration, and therefore potentially illegal (dependent on the treatment).
Controversial Lyme specialist Dr David Kaufman put Laura on a oral antibiotics for a year, then, when that didn’t work, he ordered her a PICC catheter line to deliver IV antibiotics (pictured)
This makes figures like Dr Kaufman controversial, to say the least.
‘There have been a lot of raids, there are secret Facebook groups, and [doctors like Kaufman] don’t take insurance and charge $500 to $1,500 just for a consultation,’ Laura says.
‘[Dr Kaufman] is the same: it takes six months to see him, and he bills himself as a chronic fatigue syndrome doctor on Afflicted.’
He put Laura on antibiotics for a year. He diagnosed her with a number of additional conditions, on top of Lyme disease. She seemed to develop allergies to all manner of things spontaneously.
Laura began to have massive drops in blood pressure every time she stood up, and in March 2017 he put her on IV antibiotics, but the PICC line they were delivered through became badly infected and the infection was resistant to most antibiotics.
She spent 10 days in the hospital with a 100 degree fever as doctors scrambled to find something to treat her infection.
‘It’s really scary because if I ever get a PICC line again and get an infection, I would probably die. Antibiotics won’t work and I have organ damage. My liver is failing, I think, and my gallbladder,’ says Laura.
What’s more, when she returned to the hospital, Laura’s description of her condition and her PICC line were met so incredulously that she was labelled ‘a problematic patient’ and sent to the psychiatric ward.
Laura developed a severe, antibiotic resistant infection at the site of her PICC line. She spent 10 days in the hospital with a 100 degree fever in October 2017
WHAT’S NEXT: A $40,000 TREATMENT TO HEAT THE WHOLE BODY THAT SOME CLAIM CURED THEM – BUT THE PROTOCOL IS UNPROVEN AND DANGEROUS
The cycle of hospitalizations to no avail had already all but depleted Laura’s bank accounts. Soon it was draining her family’s, too – and they weren’t even convinced of what they were paying for.
‘My Dad hasn’t spoken to me in a year, because he doesn’t believe that Lyme disease is real, but I don’t know what he thinks my motivation would be [to make it up]’ Laura says.
‘We’ve spent over $100,000 and all of our savings not even on treatment, just on specialists. I’ve burned through all of my money and all of my parents with this.’
Her California doctors couldn’t do any more to help Laura, so they suggested she try the Mayo Clinic. That ‘wasn’t the best’ experience for Laura. So she sought out more and more experimental treatments.
She’s had her blood cleaned and cycled back into her body – a process called plasmafereces – and had injections of ozone which tenuous research suggests might remove ‘dead bacteria’ from her body.
As her condition has worsened, Laura has tried increasingly extreme (and unproven) treatments, including a dialysis-like process to ‘clean’ her blood (pictured)
In addition to increasingly experimental treatment protocols, Laura has been on dozens of drugs, supplements and antibiotics over the course of the last three years (pictured)
Laura’s most recent treatment involved being stung by a bee 150 times.
Now she wants to fly to Germany to get her most extreme experimental treatment to-date: ‘whole body hyperthermia,’ which would involve heating Laura’s body as high as 107 degrees F.
St George Klinic has promised that their $40,000 protocol can cure Lyme, but pushing the human body’s temperature that high is life-threatening.
Laura was scheduled to fly to Germany this week for hyperthermia, but her GoFundMe campaign didn’t meet it’s funding goal.
But many experts, including Dr Morici-Embers, are deeply skeptical of it and other extreme treatments.
‘If you don’t harm yourself by using natural supplements or whatever, then go for it,’ she says.
‘But my contention is that we need to figure out experimentally what works, and then hopefully at some point we’ll have some good treatment that can help everyone with Lyme, but I would want to see that compound actually killing Borillia burgdorferi [the bacteria involved in most Lyme disease cases] in a test tube or animal before I would use it.’
This hasn’t happened yet, though, so ‘every patient has to really assess for themselves the -risk-benefit of every treatment, and these patients are desperate,’ Dr Morici-Embers adds.
With money running out, and her father rejecting Laura’s diagnosis, she is feeling increasingly isolated and desperate for a treatment to relieve her debilitating symptoms
COMBINATION ANTIBIOTIC TREATMENTS MAY SOMEDAY TREAT LYME – BUT NOT IN TIME FOR LAURA
Dr Morici-Embers and her lab are inching closer to understanding how the bacteria hide – the key to better diagnostics and treatments for Lyme disease.
Tuberculosis has a similar tendency to ‘hide’ in tissues like the bone marrow. Combination antibiotic therapies are effective against tuberculosis, and Dr Morici-Embers thinks that same may be true in Lyme – but they would have to be tailored.
‘Lyme is a perfect candidate for personalized medicines, and it’s really important for us to figure out if [patients] have been diagnosed, treated, continued to have signs and symptoms, and what’s the cause,’ Dr Morici-Embers says.
‘Some people have a tendency to oversimplify Lyme disease, but I think it’s a lot more complicated in terms of what the bacteria can do to the immune response.
‘If I were a clinician I would not brush it off asymptomatic in a person with history of tick-borne disease, but we need to arm clinician with better tools to diagnose and treat Lyme.’
Doing so will take time, and money. And Laura has neither.
‘I have lost years of my life to this,’ she says.
‘My career, jobs, two relationships and countless friends who just can’t understand what this all is.
‘People are desperate, but nothing seems to work.’