‘made Me Crazy: ‘ Ally Hilfiger On Her Struggle With Lyme Disease
So what does this mean for patients who are living with chronic illness after having failed the Infectious Diseases Society of America recommended short course of antibiotic treatment for Lyme? The number of patients living with chronic Lyme is staggering, with estimates as high as 2 million people in the U.S. alone. And these patients are often very sick, with profound quality of life impairments which studies show can be more severe than for many other chronic diseases.
Live Lyme bacteria and its identifying DNA have been isolated from these patients after many months to even years of antibiotics. That includes from a patient who died from chronic Lyme when her medical insurance refused to cover treatment, despite the CDC having grown live Lyme bacteria from her spinal fluid after antibiotics failed. Yet some medical societies, such as IDSA, refer to Lyme patients who continue to have symptoms after a short course of antibiotics as having something they call post-treatment Lyme disease syndrome and even reiterate that the antibiotics they recommend readily cure Lyme. They posit, instead, that PTLDS is an illness of unknown origin but with the same symptoms as Lyme, which just happens to come on after Lyme is cured with a short course of these antibiotics.
Later Symptoms Of Lyme Disease
More serious symptoms may develop if Lyme disease is left untreated or is not treated early. These can include:
- pain and swelling in the joints
- nerve problems such as numbness or pain in your limbs
- memory problems
- difficulty concentrating
Some of these problems will get better slowly with treatment. But they can persist if treatment is started late.
A few people with Lyme disease go on to develop long-term symptoms similar to those of fibromyalgia or chronic fatigue syndrome. This is known as post-infectious Lyme disease. It’s not clear exactly why this happens. It’s likely to be related to overactivity of your immune system rather than continued infection.
Has Niaid Looked At Whether Infection Persists After Antibiotic Therapy
Several recent studies suggest that B. burgdorferi may persist in animals after antibiotic therapy. In one study, NIAID-supported scientists found that remnants of B. burgdorferi remained in mice after antibiotic treatment. Another team of NIAID-supported investigators found that intact B. burgdorferi persist in nonhuman primates after antibiotic treatment. It was not possible to culture these bacteria and it is not clear whether they are infectious. More recent work by Hodzic et al. replicated the earlier finding of persisting DNA but non-cultivatable B. burgdorferi after antibiotic treatment using a mouse model. In 2017, scientists at the Tulane National Primate Research Centers, funded in part by an NIH research resources grant, reported evidence of persistent and metabolically active B. burgdorferi after antibiotic treatment in rhesus macaques.
In a first-of-its-kind study for Lyme disease, NIAID-supported researchers have used live, disease-free ticks to see if Lyme disease bacteria can be detected in people who continue to experience symptoms such as fatigue or arthritis after completing antibiotic therapy). This study remains underway.
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How I Take Care Of Myself
The only strategies that have worked to help me live my life semi-normally have been holistic lifestyle changes. I limit my exposure to stress, I eat as healthily as possible, I reduce my sugar intake, and I try to sleep well and for at least seven hours each night. All of this combined helps keep my symptoms at bay, though flare-ups can always strike at any time. And they do. In times of low sleep, high stress, or poor self-care, I know that a flare-up is right around the corner waiting to greet me to the infamous tune of Hello darkness, my old friend.
So Im pressured into taking tip-top care of myself 24/7, or I could become a zombie. Sounds more like a blessing than a curse, sure. But it gets exhausting, which isnt good because exhaustion leads to stress which leads to poor self-care whichyou get the point. Its a vicious cycle. My mind is constantly in a fearful state of that dreaded or else.
I cant eat processed foods or artificial sugars, or else my body will retaliate and Ill feel drained. I cant go to the gym more than three, *maybe* four days a week, or else I’ll exhaust myself and have to sit out gym time the following week. I cant drink more than one margarita or glass of red wine or else my thighs will go numbwhich makes for a fun game at the bar, though, when you ask someone to punch your leg as hard as they can because you wont feel a thing.
How Is Lyme Disease Treated
For early Lyme disease, a short course of oral antibiotics such as doxycycline or amoxicillin is curative in the majority of the cases. In more complicated cases, Lyme disease can usually be successfully treated with three to four weeks of antibiotic therapy.
In patients who have non-specific symptoms after being treated for Lyme disease and who have no evidence of active infection , studies have shown that more antibiotic therapy is not helpful and can be dangerous.
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Earning A Living With Chronic Lyme: Im Not Going To Make It Out Of Bed Today
Can you be a successful business owner in a competitive and stressful industry while dealing with chronic Lyme disease?
I regularly interview high-achieving sales and business leaders around the world for my Sales Game Changers Podcast. When I decided to learn more about Lyme last year, to support someone in my life with the disease, I sought people to interview who had successful careers in sales and business while challenged with the disease.
Lauren Bailey is the founder of the sales training company Factor 8 and the Girls Club. Some of our mutual acquaintances suggested I interview her since she has been public about having Lyme disease.
On my podcast, we talked about getting past obstacles on the way to business success. She shared that it has not always been easy.
Ive had times where Ive been in bed and when I was out of work. Ive had times where I was in a wheelchair, and now Im considered high functioning for somebody with Lyme disease. I think, frankly, that being driven at work is helpful to that, she said.
Being in sales and being obsessed with it helps get you out of bed and doing what you need to do. Just like having kids helps get you out of bed and doing what you need to do. If I didnt have two businesses and two little boys, I would have logged many, many more hours with my pillow for sure. Ive taken business meetings from bed!
What Other People Saw
All this was going on behind the scenes, but this is what the outside world saw: When I showed up to my kids’ school without makeup, it was because I felt like I had glass in my eyes. People had hurt feelings when I passed up dinner invitations, not knowing it was because I was terrified that I would get sick with nausea at the table. One time when I did go to our good friends’ house for dinner and I had just one glass of wine, I got so sick with fatigue and nausea that it put me to bed for a week.
My neighbors didn’t know that instead of chatting with them at the bus stop, I was lying in bed trying to conserve enough energy to greet my girls and get them an after-school snack. When I signed up as a mystery reader at the girls’ elementary school, I came home and crashed for several days in bed, dead to the world. At church, no one could see my migraines, my fluttering heart, my constipation, or my weird rashes. After going on a family road trip, I spent the next two months in bed.
Once, at a party, I shared my story about living with chronic Lyme disease with a woman, and when I finished, she said to me, “Well, thank goodness they got to the bottom of what was causing all your symptoms. And thank God it’s not one of the bad ones.” It stopped me dead in my tracks. I wanted to punch her and cry at the same time. It hurts when people don’t take me seriously because they say I “look so good” or “don’t look sick.”
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Chronic Lyme Dos And Don’ts
Chronic Lyme disease is an ongoing Borrelia burgdorferi infection that can involve any body system or tissue. The infection produces a wide range of symptoms and signs, which can be debilitating for some patients. Common symptoms include severe fatigue, migratory musculoskeletal pain, headaches, and impaired memory. Unfortunately, chronic Lyme disease is complex and often misunderstood, which means that many patients will struggle to obtain the care they need to regain their health. Every patient concerned about Lyme disease and tick-borne illness should know the following.
Performance Of One’s Task
As the immune system is in a compromised condition due to Lyme disease, it is common to develop other infections. Fatigue due to a tick-borne disease is not just a general body weakness that can be fixed with a nap or a cup of coffee but is more of a flu that causes exhaustion. The muscles literally cannot function well, leaving the entire body feeling shackled. Lifting your head from a pillow seems like a herculean feat.
Years of medication and alternative therapies can help you get out of the rut. Taking an adequate rest is also important. One needs to cut on extracurricular activities to preserve one’s energy.
As a Lyme disease patient, you will still be able to perform your usual tasks. However, this is only true in the initial stages of the disease. If you let the disease advance to the chronic stage, the bacteria will spread to the different parts of your body and can trigger other serious symptoms.
At this point, the disease will affect your brain, heart and blood circulation, muscles, and joints. In some cases, the patients end up having a difficulty in walking and making body movements. In fact, a person with chronic Lyme disease will almost become incapable of leading a normal life. Since the disease is hard to resolve at this stage, patients should invest their time and money in treating the disease during its initial stages.
A Long Journey Of Pain And Misdiagnosis
Tait estimates that she had Lyme for about 15 years before she was diagnosed. She thinks she was bitten by a tick as a teen in Californias Bay Area, where she grew up. In high school, she was a dancer. Suddenly she was getting injured more than usual joints coming out of their sockets and ligaments tearing after doing normal routines. During class, she was exhausted and having trouble concentrating. Her grades started to slip.
Looking back, its now clear I was neurologically starting to not be myself, she said. But when youre a teenager, a lot of it is just attributed to, Youre a teenager!
Tait, who was thin with a bubbly personality, recalled one doctor telling her she was too pretty to be sick.
Eventually she was diagnosed with depression and prescribed an antidepressant.
In college, Tait started to experience seizures and was diagnosed with epilepsy.
My fatigue was getting worse, she said. I was dropping out of classes left and right and I would get sick constantly. Thats where this weird sort of self-fulfilling prophecy came in: I was depressed. But I wasnt sick because I was depressed. I was depressed because I was sick.
But once they put epilepsy down , at least I had turned a corner where they had a label on something, Tait continued. Then would just add things You have fibromyalgia and you probably also have chronic fatigue syndrome. But they didnt tell me how to fix it. Everything was, Try antidepressants because we dont really know.
Defining Patient Subgroups: Post
Patients with persistent symptoms related to Lyme disease likely represent a heterogeneous population, which includes previously untreated patients, as well as those treated patients who remain symptomatic. As a result, some will manifest primarily patient-reported symptoms while others will present with symptoms in conjunction with objective, physical findings. This heterogeneity is further complicated by variation in terminology and the definitions used by different groups in the field.
Figure 3. A schematic of clinical- and research-defined patient subgroups among those with persistent symptoms associated with Lyme disease . The size of each patient subgroup is not meant to represent actual population frequency, as prevalence data is extremely limited. IDSA, Infectious Diseases Society of America ILADS, International Lyme and Associated Diseases Society CLD-PT, Chronic Lyme Disease-Previously Treated CLD-U, Chronic Lyme Disease-Untreated IgG, Immunoglobulin G CFS, Chronic Fatigue Syndrome FM, Fibromyalgia.
Keeping Track Of Flare
Having this information on hand will help you identify patterns and learn what works for you specifically to manage Lyme disease.
Lyme disease is still not very well understood. Because of that, finding a healthcare provider who is Lyme literate, or who specializes in treating Lyme disease, is very important. These practitioners have the most up-to-date research and information, and they understand the ways in which Lyme disease can manifest.
You can find these healthcare providers through Lyme disease organizations, or by asking people in support groups or others with Lyme disease.
What Its Like To Live With Lyme Disease
Nov. 1, 2021 — From the very first page of Ross Douthatâs new memoir, The Deep Places: A Memoir of Illness and Discovery, itâs easy to feel like youâre in the room with The New York Times columnist as he details his very painful 5-year battle with chronic Lyme disease.
Douthatâs journey began in the summer of 2015 when he moved with his family from Washington, DC, to a farmhouse in Connecticut. Thatâs when he first acquired a mysterious sickness that left him wracked with pain and started his mission to figure out how to get well.
Douthatâs vivid descriptions of the myriad traditional and alternative medicine treatments he tries and the doctors and patients he meets along the way is a must-read for anyone with a chronic disease, in this case Lyme, which affects 476,000 Americans every year, according to the CDC.
WebMD sat down with Douthat to find out a little bit more about his journey and what he recommends to anyone with Lyme:
WebMD: Your book is, at times, tough to read. You donât shy away from sharing how much pain you were in, especially the first 2 years of your illness.
Douthat: At least one reviewer has said the book is harrowing. What I tell people is that itâs harrowing, but itâs also a page turner. Itâs not a difficult read and the story ultimately offers various kinds of hope and optimism. Thereâs also spiritual and psychological elements woven in that are helpful. In that sense, you can expect more than just a harrowing experience.
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Can You Live A Normal Life With Lyme Disease
What do patients say?
Fontaine, a Lyme warrior, says the following: Yes, for the most part. But Lyme is a chronic, degenerative condition a multisystem inflammatory attack that must be intermittently battled on myriad fronts. There will be times of normality and times of distress. Peaks and valleys. Its critically important, then, that you guard your well-being and take good care of your body. Prioritize this and dont feel self-indulgent.
Another Lyme patient said: Think of food as medicine. Become better-informed in this regard, and always be mindful of what you eat. Poor diet, stress and a sedentary lifestyle can wreak havoc. And being attentive to mental health is every bit as important. Be kind to yourself and try to cultivate patience. Attitude and emotions color everything.
Andrea, who has been battling Lyme for over a decade, says: Chronic illness can be highly inconsistent symptoms-wise. Symptoms also vary from patient to patient and therefore can be additionally stressful. Recognizing this will help you move through difficult episodes and forward on your path to healing. I have started writing a blog to track and share my experience. That way I can inform, comfort, and help other Lymies in the online community. I also know of many that keep a private journal, which may be therapeutic in your case. I think, above all, its important not to isolate yourself.
Originally posted 2018-05-04 13:43:34.
Health’citizen Scientists’ Take On Tick
But the invalidation of the latter hasnt stopped scores of researchers from claiming that theres conclusive proof that antibiotics dont help chronic Lyme. Some have even taken the leap to insist that theres no evidence for persistent infection in chronic Lyme, despite the flagrant evidence that there is.
Innovation will always be a deviation from the known which makes people uncomfortable and is frequently regarded with bias. One type, called confirmation bias, refers to the tendency to interpret new evidence as confirmation of one’s existing beliefs.
For example, in the chronic Lyme antibiotic re-treatment studies, not all improvements lasted: Some patients relapsed once antibiotics were stopped. Pro-chronic Lyme researchers have stated that, since patients responded to antibiotics but not placebo, it means that theyre still infected with Lyme bacteria and that better and more durable treatments should be evaluated in repeat studies. Anti-chronic Lyme researchers have stated that, since the treatment doesnt work permanently, theres no evidence of persistent infection with Lyme bacteria and no further research should be performed.
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