Chronic Lyme Disease Quotes

It is no coincidence then that doctors and patients and the entire Lyme community report—anecdotally, of course, as there is still a frustrating scarcity of good data on anything Lyme-related—that women suffer the most from Lyme. They tend to advance into chronic and late-stage forms of the illness most because often it's checked for last, as doctors often treat them as psychiatric cases first. The nebulous symptoms plus the fracturing of articulacy and cognitive fog can cause any Lyme patient to simply appear mentally ill and mentally ill only. This is why we hear that young women—again, anecdotally—are dying of Lyme the fastest. This is also why we hear that chronic illness is a women's burden. Women simply aren't allowed to be physically sick until they are mentally sick, too, and then it is by some miracle or accident that the two can be separated for proper diagnosis. In the end, every Lyme patient has some psychiatric diagnosis, too, if anything because of the hell it takes getting to a diagnosis.

It's okay that I got sick, I suddenly realize. If Lyme hadn't taken me down so radically, I wouldn't have learned about stillness. I would not have discovered my enormous capacity to endure. I would have not have embraced this deeply contemplative place within my own being.

Then there were all the diseases one is vulnerable to in the woods — giardiasis, eastern equine encephalitis, Rocky Mountain spotted fever, Lyme disease, ehrlichiosis, schistosomiasis, brucellosis, and shigellosis, to offer but a sampling. Eastern equine encephalitis, caused by the prick of a mosquito, attacks the brain and central nervous system. If you’re lucky you can hope to spend the rest of your life propped in a chair with a bib around your neck, but generally it will kill you. There is no known cure. No less arresting is Lyme disease, which comes from the bite of a tiny deer tick. If undetected, it can lie dormant in the human body for years before erupting in a positive fiesta of maladies. This is a disease for the person who wants to experience it all. The symptoms include, but are not limited to, headaches, fatigue, fever, chills, shortness of breath, dizziness, shooting pains in the extremities, cardiac irregularities, facial paralysis, muscle spasms, severe mental impairment, loss of control of body functions, and — hardly surprising, really — chronic depression.

I know that I'm not the only one who struggles with feelings of self-pity. How many thousands of others are sidelined by the debilitating effects of Lyme disease? Multitudes hover on sofas and beds like me, too drained to do anything more than just the bare necessities of daily functioning. In fact, some can't even do that. Anyone living with chronic illness that imposes severe limitations must experience similar feelings of disappointment, frustration, fear, sadness, and envy. I am not alone.

This is usually accomplished by taking X-rays of the affected joints and analyzing blood for an ANA and rheumatoid factor (RF). Unfortunately, Lyme disease can cause false positive ANAs and rheumatoid factors due to a patient’s overstimulated immune system. This can lead to a mistaken diagnosis of lupus or rheumatoid arthritis. This is why drawing a CCP (cyclic citrullinated peptide) is so important. It is a specific marker for rheumatoid arthritis and will help determine whether the patient has true rheumatoid arthritis or not. Patients with a positive ANA or RF often are prescribed immunosuppressive drugs, such as steroids or immunomodulatory drugs, like Enbrel or Arava. These treatments can have dire consequences for the Lyme disease patient who is co-infected, since they are already immune-suppressed, and steroids can cause their underlying infections and subsequent manifestations

chronic Lyme where there is a high likelihood of the presence of cystic forms.

one of the most important questions that you and your progressive Lyme-aware practitioner must determine is how much of your problem is due to chronic persistent Lyme infection (or co-infections) versus chronic inflammation/damage caused by the Lyme.

Most disturbing of all, the IDSA’s guidelines actually deny the existence of chronic or persistent Lyme infection, preferring to call it “Post-Lyme Disease Syndrome” (PLDS). PLDS is viewed as a chronic

But I feel as though I've been gifted with the chance to view strength and beauty through an alternative lens. Experiencing illness has lead me to meet people and witness things that have demonstrated strength that can't be measured by miles ran or weights lifted, and beauty that can't be washed away with water or time.

In addition, traditional medical education has always taught doctors to find one cause for all of the patient’s symptoms. This is deeply ingrained in every physician’s education. We generally are not taught to look for multifactorial causes of an illness. Therefore, if a Lyme disease patient presents with thirty-five different symptoms, the established paradigm would be to try and explain these complaints according to the accepted medical model: one primary diagnosis. If the doctor could not find a single etiology, or cause, for your symptoms, it must be because it is psychological in nature, and you are crazy. Or the answer might be elusive because the symptoms can’t be understood in the HMO-dictated fifteen-minute time frame. Or perhaps the physician hasn’t looked hard enough, or just sees the world through one narrow diagnostic lens.

Interestingly, the definitive test for Lyme disease, called a western blot, was suggestive, but not absolutely diagnostic, for Lyme disease. That’s how it is with most cases of “Lyme disease.” I can’t absolutely tell you today whether or not I was infected with Borrelia burgdorferi, the bacterium that causes Lyme.

Everyone has a story. I see many clients suffering from chronic diseases such as Lyme disease, fibromyalgia, and generalized pain. Especially in these clients, I always look for the emotional component. And there is always an emotional component. Either there’s a recent divorce, death in the family, trouble with a child or parent, or financial strife that’s led to excessive stress. To reemphasize this point: you cannot heal if you don’t heal your emotions.

Certain healing foods can help your body ward off or recover from the viruses behind Lyme disease symptoms. Star anise, asparagus, wild blueberries, radishes, celery, cinnamon, garlic, apricots, and onions

bentonite clay, Saccharomyces boulardii, N-acetyl cysteine (NAC), activated charcoal, and cholestyramine. (Binders are natural or pharmaceutical materials that

The Whole30 is ideal to help normalize an overactive immune system, decreasing systemic inflammation and reducing or eliminating the symptoms of your autoimmune disease, chronic pain, or immune-related conditions (like Lyme disease). However, there are some Whole30 Approved foods that are healthy for most people, but might exacerbate your symptoms or fire up your immune system. The trouble is there isn’t just one list of foods that negatively impact all chronic diseases. You are a unique snowflake. That means foods that may be perfectly fine for someone else with your same condition may make your symptoms much worse, and vice-versa. This makes it incredibly hard to create one protocol that works well for everyone with an immune dysfunction. Eggs, tomatoes, peppers, eggplant, potatoes, instant coffee, nuts and seeds, beef, lamb, oranges, grapefruit, lemons, and limes . . . These are all foods that are either known to be commonly problematic for those with autoimmune conditions, or are common food sensitivities for those with increased gut permeability.

convincing biologic evidence exists for symptomatic chronic B. burgdorferi infection in patients after recommended treatment regimens for Lyme disease.

No convincing biologic evidence exists for symptomatic chronic B. burgdorferi infection in patients after recommended treatment regimens for Lyme disease.

The majority of Lyme patients I see in my practice have peripheral neuropathy. It presents as burning sensations in different parts of the body, or tingling and numbness that often comes and goes. Patients usually describe this in the upper and lower extremities, and often on their face and scalp. Many patients have gone to the emergency room for a CAT scan of the head or an MRI of the brain to rule out a transient ischemic attack (TIA) or stroke/cerebrovascular accident (CVA), since they had numbness, which was new or increased, in one part of their body. The doctors would rule out a TIA or stroke and send them home without a diagnosis, often telling them to follow up with their primary care physician and a neurologist.

Flagyl was clearly effective in the treatment of Lyme disease. But how did it work? As early as 1967 The British Journal of Venereal Diseases had published a study showing Flagyl to be effective in certain cases of syphilis, and that it had an effect on bacterial DNA and RNA irrespective of bacterial replication. Could this be the mechanism of Flagyl’s action against Burrelia burgdorferi? The key to Flagyl’s effectiveness on Lyme, however, was not reported until several months after my study was presented. Dr. O. Brorson, a Norwegian researcher, published a paper on Flagyl and its effect on the cystic forms of Lyme disease six months after I presented my research. The cystic form of Lyme disease, it turns out, is one mechanism that Borrelia burgdorferi utilizes to persist in the body. Dr. Brorson reported that Flagyl would cause Borrelia cysts to rupture, and he went on to publish that he could see under the microscope the cell wall forms of Borrelia burgdorferi (helical/spiral–shaped organisms) transform into cystic forms, and under proper conditions convert back into mobile spirochetes. A review of the medical literature revealed that these cystic forms had, in fact, been reported in syphilis. No one had clearly made the link between Borrelia and a cystic form of the organism that could persist for long periods of time in a dormant state. It was a highly evolved survival mechanism that would allow the organism to reemerge when conditions were optimal. My patient, Mary, had been treated initially with Plaquenil, which according to Dr. Brorson’s research also affects the cystic forms, yet it appeared that it was not powerful enough to destroy the dormant forms and prevent a relapse, or to prevent her from passing it on to her fetus. She had also been treated with drugs that addressed the cell wall and intracellular forms of Lyme. Although Plaquenil has some effect on cystic forms, it is often primarily used in antibiotic regimens with Lyme disease to alkalize the intracellular compartment, modulate autoimmune reactions, and affect essential enzymes necessary for bacterial replication. Clearly, however, it is not powerful enough to destroy enough of the

Humans have eaten eggs for thousands of years. They were once an amazing survival food for us to eat in areas of the planet where there were no other food options at certain times of year. That changed with the turn of the 20th century, though—when the autoimmune, viral, bacterial, and cancer epidemics began. The average person eats over 350 eggs a year. That includes whole eggs and also all the foods with hidden egg ingredients. If you’re struggling with any illness, such as Lyme disease, lupus, chronic fatigue syndrome, migraines, or fibromyalgia, avoiding eggs can give your body the support it needs to get better. The biggest issue with eggs is that they’re a prime food for cancer and other cysts, fibroids, tumors, and nodules. Women with polycystic ovary syndrome (PCOS), breast cancer, or other cysts and tumors should avoid eggs altogether. Also, if you’re trying to prevent cancer, fight an existing cancer, or avoid a cancer relapse, steer clear. Removing eggs from your diet completely will give you a powerful fighting chance to reverse disease and heal.

In the absence of certainty, medical science remains unsure what story to tell. Too often it turns away from patients rather than listening to the long and chaotic stories we tell, narratives that start and stop and double back, searching for meaning in the or house rash that broke out that day or the car accident that triggered pain of the death after which nothing was the same. Indeed, one reason that people who may or may not have Lyme disease cling to the diagnosis of chronic Lyme as a name for their medically unexplained symptoms is that the impersonal nature of modern medicine has no better explanations, at least not on the level of storytelling. When we suffer, we want recognition. Where science is silent, narrative creeps in.