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Post Treatment Lyme Disease Syndrome Symptoms

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Post Treatment Lyme Disease Symptoms

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

Post Treatment

After treatment is complete and the patient is released from combatting Lyme disease infections, some symptoms may persist in an intermittent manner. Some PTLDS symptoms may be mild while some may be more severe. Generally, the severe PTLDS symptoms work themselves out quickly within 2-3 months. True post treatment Lyme disease syndrome symptoms come and go and become less and less, over time with a normal lifestyle. A normal lifestyle constitutes a normal healthy diet without dietary modifications, except for gluten most times. Symptoms associated with PTLDS continuously lessen with the ability to consistently increase exercise and with the ability to handle physical, mental, and emotional stressors without worsening of symptoms.

Depending Factors

Depending on the damage done by the Lyme disease infections, will depend on the symptoms associated with PTLDS. With true PTLDS, intermittent symptoms continue to slowly decrease in frequency and severity and over time, instead of increase. If symptoms continue to increase with a normal lifestyle and one continues to get sick and stay sick, then it could be likely the persons Lyme disease treatment did not quite take them to true remission.

What Aggravates PTLDS

Physical Exercise


The Common Belief Lyme Disease Can Only be Managed

A Common Mistake

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 .

What Is Post Treatment Lyme Disease Syndrome

PTLDS is much easier to define than chronic Lyme. After receiving standard treatment for Lyme , some people still continue to have clinically relevant pain, fatigue, sleep disturbance, depression, and lower quality of life. Usually, the blood tests for these people are normal. This has been well documented in several studies.

PTLDS affects between 10 and 20% of people treated for Lyme, according to official estimates. Other studies show that mild symptoms, whether clinically relevant or not, remain for half or more of patients after treatment.

What causes PTLDS? There are several possibilities.

  • Bacteria that remain even after aggressive antibiotics
  • The inability of some antibiotics to kill Borrelia burgdorferi in biofilm-like structures.
  • Inflammatory Borrelia burgdorferi components remain after the bacteria are killed.

The question then becomes why do 10 -20% of people treated for Lyme not recover completely? With 300,000 Lyme cases per year just in the US, that could leave 60,000 people per year who deal with chronic, long-lasting symptoms. One study estimates that by 2020 the cumulative number of people dealing with PTLD could be as high as 1.9 million.

Genetics can play a role in how well treatments for Lyme disease work.

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Late Persistent Lyme Disease

If Lyme disease continues without a diagnosis, you can develop serious symptoms months or even years after the tick bite. This is late persistent Lyme disease. One common symptom is arthritis of the knee, which sometimes spreads to other joints. Symptom flares can last as long as six months.

You may have some of the same symptoms as early disseminated Lyme disease, including fatigue, memory problems, and inability to control your facial muscles. You may also have heart palpitations. Rarely, people develop meningitis. You may have a headache and stiff neck, but meningitis from Lyme disease is not fatal.

Recovery from late stage Lyme disease takes 4 to 6 weeks for most people. You will take oral antibiotics for about a month. After a month, if you still have symptoms, especially neurological symptoms like memory loss, your doctor may give you antibiotics through an intravenous drip.

If the infection affects your heart, you may need a temporary pacemaker. Very rarely, heart problems from Lyme disease can be fatal.

The majority of people, about 90%, recover fully from late stage Lyme disease. Arthritis from Lyme disease can sometimes cause permanent joint damage, but this is not common.

Where Is Lyme Disease Prevalent

Lyme: Would a disease by any other name be easier to treat?

LD is spreading slowly along and inland from the upper east coast, as well as in the upper midwest. The mode of spread is not entirely clear and is probably due to a number of factors such as bird migration, mobility of deer and other large mammals, and infected ticks dropping off of pets as people travel around the country. It is also prevalent in northern California and Oregon coast, but there is little evidence of spread.

In order to assess LD risk you should know whether infected deer ticks are active in your area or in places you may visit. The population density and percentage of infected ticks that may transmit LD vary markedly from one region of the country to another. There is even great variation from county to county within a state and from area to area within a county. For example, less than 5% of adult ticks south of Maryland are infected with B. burgdorferi, while up to 50% are infected in hyperendemic areas of the northeast. The tick infection rate in Pacific coastal states is between 2% and 4%.

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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.

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

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Case Definition Of Post

PTLDS refers to a pattern of nonspecific symptoms that persist for more than 6 months after proven and appropriately treated Lyme borreliosis, and which are caused neither by active or persistent B. burgdorferi infection nor by other diseases. Symptoms include fatigue, neurocognitive deficits, arthralgias or myalgias, without clinically detectable or measurable signs . For the diagnosis of PTLDS, a well-documented history of distinct clinical signs and symptoms fitting the case definitions of Lyme borreliosis , laboratory evidence of a previous infection with B. burgdorferi, and a plausible chronology of clinical manifestations of Lyme borreliosis and subsequent symptoms are required. Furthermore, other somatic, psychiatric or behavioural aetiologies for the reported symptoms must meticulously be excluded . Of note, positive Lyme serology without previous manifestations of Lyme borreliosis does not qualify for the diagnosis of PTLDS .

Strle et al. speculated that post-Lyme symptoms might be attributed to more than one syndrome, possibly encompassing conditions of less severe symptoms such as malaise, fatigue or minor arthralgias lasting for months after adequate treatment of Lyme Borrelia infection, and more disabling conditions of severe musculoskeletal pain and incapacitating fatigue persisting for years after treated Lyme borreliosis .

What Are The Risk Factors For Post Treatment Lyme Disease

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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.

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Supporting Patients With Long

There has been controversy about Lyme disease , first about whether people really can have persistent problems after Lyme disease, and then about whether more antibiotic treatment is beneficial if they do still have symptoms. This overview compiles into one summary information about what the studies have found about the cause of the symptoms and the possible treatments, so that GPs are better able to advise patients who have the long-term problems.

Some patients have persistent symptoms after LD, despite having had the recommended antibiotic treatment. A small proportion of LD patients have a relevant delay in treatment, which may increase their risk for the development of problems that can last a long time, perhaps a few years. These delays can sometimes result from the difficulty of diagnosis, particularly as many LD cases do not have the erythema migrans rash. Catching LD while holidaying abroad may make a delay more likely because it may be some time before the patient returns home and sees a doctor. The Royal College of General Practitioners has prepared an LD toolkit and mentions post-treatment Lyme disease syndrome as one term used to describe these long-term problems. PTLDS can significantly impact quality of life and recovery may be extremely slow, with no apparent improvement from one month to the next, although very subtle improvement may be seen from one year to the next.

Lyme Disease Prevention And Treatment In Greater Houston

Internal Healing and Wellness MD has already helped thousands of people in Spring, The Woodlands, and other cities in Greater Houston deal with their Lyme disease diagnosis and make a comprehensive plan for recovery. We can also educate the public on how to minimize interactions with ticks and other disease-carrying animals.

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Ptlds Vs Chronic Lyme Disease

There is some confusion about the difference between chronic Lyme disease and post-treatment Lyme disease syndrome.

Post-Treatment Lyme Disease Syndrome is the preferred term for many physicians and organizations, including the CDC. It refers specifically to persistent symptoms of Lyme disease in a patient who has already undergone treatment for Lyme disease. Other patients and physicians refer to this same condition as chronic Lyme disease, since the patient is experiencing chronic symptoms.

However, there are cases in which patients and physicians may refer to chronic Lyme disease in the absence of any prior treatment. Remember that many patients go years without ever getting a proper diagnosis of Lyme disease, let alone treatment. Once a diagnosis is made, the symptoms of their late-stage Lyme disease may have become chronic, i.e. leading to chronic Lyme disease. This would not be considered a case of PTLDS since no diagnosis or treatment ever occurred before the disease became chronic.

The important thing to remember is that the earlier a diagnosis is made and treatment is given, the less likely a patient is to develop persistent symptoms.

Detecting Lyme Disease With Laboratory Tests

Lyme borreliosis: diagnosis and management

Lyme disease diagnosis relies on clinical observations and laboratory tests for the presence of antibodies against the B. burgdorferi bacteria. Since it can take several weeks for antibodies to develop against the bacteria, lab tests help confirm the diagnosis. If Lyme disease goes undetected and untreated, the disease will continue to progress and symptoms may appear months after the tick bite. Some patients who have untreated Lyme disease are hospitalized because the bacteria can affect the brain, the nervous system and the heart.

The CDC recommends a two-step laboratory blood sample test to accurately diagnose Lyme disease. New tests are also being developed as alternatives to the two-step process but still require review and clearance from the Food and Drug Administration.

It is not always necessary to obtain a blood test to confirm early Lyme disease since the necessary protein antibodies in the blood that make a test positive may take many days to form. Thus, it is common to have a negative blood test early in infection. If a patient is at risk and might have an infection early, it is usually better to treat for Lyme disease rather than rely on a blood test. Blood tests are more helpful for late disease that may have gone untreated early in the infection course.

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Is Ptlds Really A Set Back Or Just Part Of The Healing Process

Our bodies were designed to self-heal. But this can only occur when our natural healing processes are supported. The first step to healing, though, is shifting your perspective. You must believe that you can overcome PTLDS and that healing takes time and is a journey. In fact, it is even possible to learn to embrace and enjoy the healing process.

This might include learning about and trying new therapies to aid you in your recovery, such as Emotional Freedom Technique , Neuro emotional technique , and ACMOS. Nutrition is another key factor in healing and health. Eating to support your immune function can also be something from which you harvest joy. Your diet is also something that you can control.

If you can calm your nervous system, fuel your immunity through detox and diet, eliminate triggers, open your mind to alternative therapies, and write yourself in as the hero of your healing journey, you will find that there is a light at the end of the Lyme tunnel.

State Of Evidence For The Existence Of Ptlds

Data from prospective observational studies of previously healthy persons with Lyme borreliosis, as summarised in tables 5 and 6, and clinical experience suggest that there are patients who are essentially free of symptoms until they are infected with B. burgdorferi. After treatment, these patients initially show an adequate clinical response with resolution of clinical signs and symptoms, such as erythema migrans or other measurable signs. However, a small percentage of patients start to report fatigue, lack of concentration, musculoskeletal pain or other nonspecific symptoms. Despite comprehensive diagnostic evaluation, no other reasons for these symptoms can be identified, and there is no underlying premorbid or current psychopathology. The clinical course with resolving acute symptoms being replaced by nonspecific symptoms, the timely association of acute infection and persisting symptoms, serology and the lack of any other cause match the case definition of PTLDS.

Whether PTLDS is pathophysiologically different from other post-infectious syndromes remains unclear . The aetiology notwithstanding, the clearly defined PTLDS, with an unambiguous clinical course and serology, is separate from post-Lyme sequelae with measurable or observable signs, such as persisting facial palsy, or other irreversible central or peripheral post-Lyme neural damage.

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Comparison With Other Studies

Fig 4Comparison with other post-treatment Lyme disease symptoms or syndrome studies.

We compared scores from our study with the scores from 4 studies . The Fatigue Severity Scale and modified Fatigue Severity Scale mean scores, and the Physical Health component score of the Short form 36 and SF-36 v2 were compared, and the baseline assessment point was chosen for interventional studies. *Denotes statistical significance when compared to our study with a two-sample T-test at the alpha = 0.05 level after applying a Bonferroni correction based on the number of studies being compared to our study. PTLD: Post-Treatment Lyme Disease Symptoms or Syndrome.

Our PTLD symptoms subjects appear to more closely resemble those described in Aucott et al. study . This study, which prospectively evaluated symptomatic patients with erythema migrans, reported the mean values for the SF-36v2 subscales for patients with and without PTLD syndrome at 6 months post therapy. There were no significant differences between PTLD syndrome patients in that study and the PTLD symptoms patients in our study for all but one subscale . The General Health subscale mean value was significantly lower in our PTLD symptoms patients, indicating greater impairment. In comparison, our recovered group had significantly better scores in 5 of 8 subscales when compared with patients without PTLD syndrome from that study .

The Experience Of Lyme Disease

Early Signs and Symptoms of Lyme Disease

In our book, Conquering Lyme Disease: Science Bridges the Great Divide, we review several of the key features of Lyme disease that can make the experience of this illness so challenging, including:

  • The politically charged climate
  • The protean nature of manifestations of the illness
  • The waxing and waning course of symptoms
  • The psychological ramifications of having an “invisible” chronic illness and the experience of invalidation
  • The challenge of having a disease that affects the brain and sensory system
  • The impact of uncertainty surrounding diagnosis, treatment, and prognosis

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