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How To Treat Post Lyme Disease Syndrome

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What Are The Risk Factors For Post Treatment Lyme Disease

Solving the Puzzle of Post Treatment Lyme Disease Syndrome/Combating Chronic Lyme

Risk factors for Post Treatment Lyme Disease include:

  • Delay in diagnosis
  • Increased severity of initial illness
  • Presence of neurologic symptoms

Increased severity of initial illness, the presence of neurologic symptoms, and initial misdiagnosis increase the risk of Post Treatment Lyme Disease. PTLD is especially common in people that have had neurologic involvement. The rates of Post Treatment Lyme Disease after neurologic involvement may be as high as 20% or even higher. Other risk factors being investigated are genetic predispositions and immunologic variables.

In addition to Borrelia burgdorferi, the bacteria that causes Lyme disease, there are several other tick-borne co-infections that may also contribute to more prolonged and complicated illness.

What Is Late Lyme Disease

Lyme disease, also known as Lyme borreliosis, is caused by an infection with the bacteria Borrelia burgdorferi. This bacteria is disseminated through tick bites. Infected ticks usually bite small mammals, who do not develop any kind of infection from the bacteria. When humans are exposed to B. Burgdorferi from a tick bite, however, they can develop Lyme disease.

People who work outside or spend time in woodland areas, where there is greater potential for exposure to tick bites, are most at risk of infection.

Lyme disease is a condition which progresses in stages:

  • A person will initially develop early localized lyme disease, in which the bacteria have not yet spread through the body. At this stage, which generally has its onset days or weeks after the tick bite, a personâs symptoms will usually include a fever, fatigue, and a rash, called the Erythema Migrans rash, which has a distinctive bullsâ eye shape and affects around two thirds of people who develop Lyme disease. See this resource for more information on symptoms and treatment of early localized Lyme disease.
  • If Lyme disease is not diagnosed in either of these early stages, and is not treated effectively with antibiotics, the bacteria that cause LD can spread throughout the body from the site of the tick bite, resulting in late disseminated Lyme disease, or late lyme disease. The onset of symptoms and complications of late disseminated Lyme disease is usually around 6-36 months after the original infection.
  • Genetic Variants And Chronic Lyme:

    Genetic variants that impact how well treatments work:

    ABCB1 gene: controls the way the cells export medications back out of the cell.

    Check your genetic data for rs1128503 :

    • A/A: typical risk of PTLDS
    • A/G: increased risk of post-treatment Lyme disease syndrome
    • G/G: typical

    TLR1 gene: part of the bodys immune response system

    Check your genetic data for rs5743618 :

    • C/C: 1.9x more likely to have antibiotic-refractory Lyme arthritis
    • A/C: typical Lyme risk

    HLA-DRB1: part of the bodys immune response system

    Check your genetic data for rs660895 :

    • G/G: increased risk of Lyme arthritis, rheumatoid arthritis
    • A/G: increased risk of rheumatoid arthritis
    • A/A: typical risk

    Genetic variants that impact your bodys immune response to Lyme:

    TLR2 gene: codes for a part of the immune system response to pathogens

    Check your genetic data for rs5743708 :

    • A/A: probably less likely to have Lyme
    • A/G: much less likely to have advanced-stage Lyme
    • G/G: typical

    ANO10 gene: codes for a protein involved in macrophages and cellular volume in the immune response

    Check your genetic data for rs41289586 :

    • C/C: typical
    • C/T: increased risk of Lyme
    • T/T: increased risk of Lyme

    Also Check: Lyme Disease Support Group Nj

    Can Lyme Borreliosis Become Chronic

    Whether PTLDS is a specific disease remains controversial because of the lack of objective evidence of an ongoing immunological or infectious process in patients with correctly treated Lyme disease. Furthermore, identical symptoms appear to be equally prevalent in individuals without a history of Lyme borreliosis . Also, original data on PTLDS are scarce and heterogeneous, and no standardised, validated and widely accepted case definition is available. Moreover, the debate on PTLDS is confused by the discussion on whether Borrelia infection can persist and become chronic after adequate treatment .

    Indeed, there is no scientific evidence of chronic Lyme borreliosis be it due to either microbiological failure of appropriate antibiotic treatment, antibiotic resistance , or pathogen persistence after correct treatment . B. burgdorferi culture results from erythema migrans skin lesion biopsies following adequate antibiotic treatment have been negative in almost all patients, including those with persisting symptoms after treatment . Furthermore, there are also no records of a reactivation of hypothetically latently persisting B. burgdorferi among immunocompromised hosts, as can be observed in latent infections due to intracellularly persisting pathogens.

    Background On Lyme Disease:

    Lyme Disease and Post

    In North America, Lyme disease is caused by Borrelia burgdorferi, a bacteria carried by black-legged ticks.

    Symptoms of Lyme include:

    • fatigue
    • skin rash erythema migrans

    The CDCs data on Lyme disease dates back to 1991, but reports of Lyme disease go back to the mid-1970s. The number of cases has grown steadily since the early 90s, and the areas where the disease is found has spread across the country.

    In Europe, Lyme is also present and sometimes called Borreliosis. Cases can involve genospecies of Borrelia including B. afzelii, B. garinii and B. valaisiana.

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    Study Shows Evidence Of Severe And Lingering Symptoms In Some After Treatment For Lyme Disease

    In a study of 61 people treated for the bacteria that causes Lyme disease, Johns Hopkins researchers conclude that fatigue…

    In a study of 61 people treated for the bacteria that causes Lyme disease, Johns Hopkins researchers conclude that fatigue, pain, insomnia and depression do indeed persist over long periods of time for some people, despite largely normal physical exams and clinical laboratory testing.

    Post-treatment Lyme disease syndrome is a real disorder that causes severe symptoms in the absence of clinically detectable infection, says John N. Aucott, M.D., associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center.

    The findings, published in the December issue of Frontiers in Medicine, could spur further investigation into the cause of persistent symptoms, a source of medical controversy. As Lyme disease rates have steadily climbed in the United States since it was first recognized in the mid-1970s, so have reports of a collection of symptoms that patients commonly refer to as chronic Lyme disease. Experts in the field have questioned the validity of this term because of the lack of direct evidence in this group of patients of ongoing infection with Borrelia burgdorferi, the bacterium that causes Lyme disease.

    Other Johns Hopkins researchers who participated in this study include Alison W. Rebman, Ting Yang, Erica A. Mihm, Mark J. Soloski and Cheryl Novak.

    Can Lyme Disease Completely Be Cured

    Several weeks of treatment with antibiotics will cure Lyme disease for the majority of people.

    Unfortunately, not everyone reacts the same way to Lyme disease. Genetic variants can cause some peoples immune system to act differently towards the Borrelia species, and other genetic variants can influence how well antibiotics work within your cells.

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    How To Prevent Post

    While you may not be able to prevent post-treatment Lyme disease syndrome, you can take precautions to prevent coming into direct contact with infected ticks. The following practices can reduce your likelihood of getting Lyme disease and developing persistent symptoms.

    If a tick bites you, contact your doctor. You should be observed for 30 days for signs of Lyme disease. You should also learn the signs of early Lyme disease and seek prompt treatment if you think youre infected. Early antibiotic intervention may reduce your risk of developing chronic symptoms.

    The signs of early Lyme disease can occur from 3 to 30 days after a bite from an infected tick. Look for:

    • a red, expanding bulls-eye rash at the site of the tick bite

    Treatment For Other Forms Of Lyme Disease

    Dr. Kalpana Shere-Wolfe on Post Treatment Lyme Disease Syndrome

    People with other forms of disseminated Lyme disease may require longer courses of antibiotics or intravenous treatment with antibiotics such as ceftriaxone. For more information about treating other forms of Lyme disease, see:

    The National Institutes of Health has funded several studies on the treatment of Lyme disease that show most people recover within a few weeks of completing a course of oral antibiotics when treated soon after symptom onset. In a small percentage of cases, symptoms such as fatigue and myalgia can last for more than 6 months. This condition is known as post-treatment Lyme disease syndrome , although it is also sometimes called chronic Lyme disease. For details on research into chronic Lyme disease and long-term treatment trials sponsored by NIH, visit the visit the National Institutes of Health Lyme Disease web siteexternal icon.

    Read Also: Lyme Disease Chain Of Infection

    Possible Pathogenesis Of Ptlds

    Pathogenic mechanisms that would lead to post-Lyme disease symptoms have not been identified so far. Possible mechanisms other than active infection , especially immune system abnormalities or infection-induced autoimmunity, have been suggested. Recently, Strle et al. reported that in European patients with erythema migrans, mostly due to B. afzelii, high type 1 T-cell-associated CXCL9 and CXCL10 chemokine responses correlated with more effective immune-mediated spirochaetal killing, whereas high type 17 helper-T-cell-associated cytokines and interleukin 23-associated immune responses correlated with post-Lyme symptoms. Persisting symptoms in this cohort included arthralgias, headache and fatigue, which were not incapacitating and usually resolved within months after antibiotic therapy. However, concerns about the statistical interpretation of such immunological findings due to low statistical power have been raised . Controversial results were reported on the association between humoral immune response to endothelial cell growth factor and PTLDS . Other potential aetiologies of PTLDS include antineural antibodies, bacterial debris and tissue destruction . Chronic pain syndromes, fatigue or neurocognitive deficits were also considered to be a consequence of a central sensitisation syndrome that may be induced by infectious or noninfectious stimuli .

    Treating Post Lyme Syndrome

    David JerniganChronic FatigueLyme Diseaselyme-diseaseNeuroPhotonic Therapy Post-Lyme Syndrome

    Post-Lyme Syndrome is a clinical condition where symptoms remain beyond the point where the bacteria can be detected. The damage to the body that was caused by the infections persists even though your doctor feels the medicines have killed all the bacteria.

    Post-Lyme Syndrome is the most obvious problem with the idea that antibiotics are the answer to Lyme disease. It is also the problem with taking natural supplements that are touted to kill the bacteria. Killing the bacteria and even doing extensive detoxification treatments does nothing to actually repair the damaged tissues that are the source of your symptoms.

    Of course eliminating the damaging bacteria and toxins is necessary. However, very often the damaged tissues of the body cannot just go back to normal through the bodys natural healing mechanisms.

    Chronic Post-Lyme symptoms indicate that you have most likely dealt with the first phase of the healing process by resolving the infections. Now you must enter the second phase of healingthe repair, restore, and regenerative phase of healing.

    Lyme Disease is similar to another of historys terrifying neurological infections, Polio, whose allopathic treatment left many to suffer with Post-Polio Syndrome. Both syndromes leave the people who have been declared cured in spite of slowly-progressing condition marked by short to long periods of stability.


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    Full Recovery From Ptlds Exiting Survival Mode

    Patients with Lyme disease often carry a tremendous toxic burden in their minds and body. The bacterial load and inflammation-induced toxicity in the connective tissue are well established. To this end, full-body detoxification tremendously reduces toxic load and restores health to the organs of elimination. But the little acknowledged fact by the current healthcare industry is that negative emotions are toxins too.

    Chronic pain that stems from an overactive HPA axis pushes Lyme patients into a why me? victim mindset.

    Neuro emotional therapies aimed at reprogramming the subconscious mind help regulate an overstimulated HPA axis and the vicious loop of cortisol addiction associated with it.

    Releasing trapped negative emotions with Neuro emotional technique and Emotional Freedom Technique has been seen to be beneficial for healing emotional trauma associated with PTLDS. EFT targets energy meridian points on the body and is particularly useful for releasing trapped emotions.

    Additionally, for Lyme and PTLDS patients, ACMOS, an energy balancing therapy at NYCIM, offers energetic biofeedback about healing and repair seen at the cellular level. Based on Traditional Chinese Medicine principles of Qi energy flow, ACMOS provides an accurate assessment of the effectiveness of detoxification, bacterial load removal, and organ function.

    How To Treat Lyme Disease


    Treatment of Lyme disease involves the use of oral antibiotics. If caught in the early stages, a 14- to 21-day course of antibiotic therapy is usually quite successful in eradicating the infection, and most people generally recover rapidly and completely. However, if the disease has affected the nervous system or heart, your health care provider may recommend treatment with a 14- to 28-day course of intravenous antibiotics instead.

    Unfortunately, not everyone achieves a complete recovery with antibiotic therapy. Even after treatment, some people continue to experience symptoms such as fatigue and muscle and joint pain. When this happens, the condition is known as post-treatment Lyme disease syndrome or postLyme disease syndrome and is not helped by further antibiotic treatment.

    The term chronic Lyme disease is also sometimes used to describe people who have long-term side effects attributed to infection with Lyme disease. However, because the term has been used to describe people with both confirmed and unsubstantiated cases of Lyme disease, most experts dont support its use.

    In any case, the response to Lyme disease treatment varies from person to person, and while the cause of long-lasting symptoms in patients whove been treated with antibiotics is unclear, some experts believe that certain people develop an autoimmune response to the infection that contributes to their symptoms.

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    Update Of The Swiss Guidelines On Post

    Publication Date: 04.12.2016 Swiss Med Wkly. 2016 146:w14353

    Johannes Nemeth, Enos Bernasconi, Ulrich Heininger, Mohamed Abbas, David Nadal, Carol Strahm, Stefan Erb, Stefan Zimmerli, Hansjakob Furrer, Julie Delaloye, Thierry Kuntzer, Ekkehard Altpeter, Mathias Sturzenegger, Rainer Weber, for the Swiss Society for Infectious Diseases and the Swiss Society for Neurology

    Chronic Lyme Disease Vs Post

    Patients typically use the term chronic Lyme disease to describe the cluster of symptoms that started after getting Lyme disease and that persist despite having received a course of antibiotic treatment which has been deemed curative by the Infectious Diseases Society of America. Patients say, “I’m not cured. I have symptoms now that I never had before Lyme disease. I’m fatigued 90% of the day. My muscles ache. My brain is in a fog. I can’t think clearly any more. I’m super sensitive to light and sound. What is going on? Chronic Lyme disease does exist – I’m a living example of it!”

    Whatever one calls it, the experience is the same. Most often these patients experience profound fatigue, pain, and/or cognitive impairment. Mild to moderate levels of depression and anxiety may also accompany these symptoms, as the functional limitations can lead to social isolation, inability to work, and loss of sense of one’s identity as a provider, caretaker, or friend. Sometimes patients find themselves identifying with Job – the just and good man in the Bible whose life was wrecked by illness, death of loved ones, and economic disaster he felt tormented by God.

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    Post Hoc Ergo Propter Hoc

    In our experience, the majority of patients with presumed post-Lyme symptoms do not fulfil the diagnostic criteria of PTLDS. This notion is supported by observations that more than half of patients recruited in randomised controlled trials of PTLDS had to be excluded because they failed to fulfil the diagnostic criteria . Apparently, many patients wrongly attributed their present symptoms to a possible infection in the distant past, or linked their symptoms to a positive serology . There is research focusing on psychological and societal circumstances, the contaminated milieu phenomenon, as suggested earlier , meaning that unscientific societal concepts or contexts of health and disease, errors in judgment by both clinicians and patients, the influence of misleading media reports, misinformation on the Internet, or self-serving support groups, bring patients to neglect any objective findings, such as lack of laboratory evidence for borrelial infection . Also, it has been noted that individuals in a society that spends more on healthcare are more likely to consider themselves as sick .

    What Are The Symptoms Of Post

    Post Treatment Lyme Disease Syndrome

    Signs of chronic Lyme Disease can vary from person to person, and may include :

    • Musculoskeletal pain
    • Persistent fatigue
    • Severe headaches
    • Cognitive difficulties such as a lack of concentration, short-term memory loss, slowed speech, and depression

    You might be diagnosed with post-treatment Lyme Disease syndrome if you had a clinical Lyme Disease diagnosis and received antibiotics to treat it, but suffer from continuous or recurring symptoms for at least six months after you’ve completed your treatment. Your symptoms must be invasive enough to have an impact on your daily functioning to receive this diagnosis.

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    Why Are Antibiotics The First Line Of Treatment For Lyme Disease

    The use of antibiotics is critical for treating Lyme disease. Without antibiotic treatment, the Lyme disease causing bacteria can evade the host immune system, disseminate through the blood stream, and persist in the body. Antibiotics go into the bacteria preferentially and either stop the multiplication of the bacteria or disrupt the cell wall of the bacteria and kill the bacteria . By stopping the growth or killing the bacteria the human host immune response is given a leg up to eradicate the residual infection. Without antibiotics, the infection in Lyme disease can evade the host immune system and more readily persist.

    Symptoms Of Post Treatment Lyme Disease

    • Include severe fatigue, musculoskeletal pain, & cognitive problems
    • Can significantly impact patients health and quality of life
    • Can be debilitating and prolonged

    Our research indicates the chronic symptom burden related to PTLD is significant. Although often invisible to others, the negative impact on quality of life and daily functioning is substantial for PTLD sufferers.

    The chronic symptom burden related to Lyme disease is considerable, as shown on the left side of the graph above, and statistically significantly greater than the aches and pains of daily living experienced by the control group, on the right.

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