https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/

Treatment and Prognosis of Lyme Disease

What is the treatment for Lyme disease?

The first-line standard of care treatment for adults with Lyme disease is doxycycline, a tetracycline antibiotic. Other antibiotics that have activity against borrelia include the penicillin-like antibiotic, amoxicillin, and the cephalosporin, Ceftin. The mainstay of treatment is with oral (pill) antibiotics, but intravenous antibiotics are sometimes indicated for more difficult to treat cases such as meningitis, late Lyme arthritis, or neurologic-Lyme disease.

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 bacteria can more easily evade the host immune system and persist in the body. Antibiotics go into the bacteria preferentially and either stop the multiplication of the bacteria (doxycycline) or disrupt the cell wall of the bacteria and kill the bacteria (penicillins). 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 more readily persist and disseminate.

What are the side effects of Lyme disease treatments?

Antibiotics, like all medications, have the potential for side effects. Any antibiotic can cause skin rashes, and if an itchy red rash develops while on antibiotics, a patient should see their physician. Sometimes symptoms worsen for the first few days on an antibiotic. This is called a Herxheimer reaction and occurs when the antibiotics start to kill the bacteria. In the first 24 to 48 hours, these dead bacteria stimulate the immune system to release inflammatory cytokines and chemokines that can cause increased fever and achiness. This should be transient and last no more than a day or two after the initiation of antibiotics.

The most common side effect of the penicillin antibiotics is diarrhea, and occasionally even serious cases caused by the bacteria Clostridium difficile. This bacterial overgrowth condition occurs because antibiotics kill the good bacteria in our gut. It can be helpful to use probiotics to restore the good bacteria and microbiome balance.

Prognosis

The prognosis after early treatment of Lyme disease is generally very good. The prognosis worsens, however, when diagnosis and treatment are delayed.

Most patients with early Lyme disease infection recover with antibiotics and return to their normal state of health. However, some patients suffer from chronic symptoms related to Lyme disease despite standard of care antibiotic therapy. For research studies, a defined subset of this condition is called Post Treatment Lyme Disease Syndrome (PTLDS).

What is Post Treatment Lyme Disease Syndrome?

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

Post Treatment Lyme Disease Syndrome (PTLDS) represents a subset of patients who remain significantly ill 6 months or more following standard antibiotic therapy for Lyme disease. PTLDS is characterized by a constellation of symptoms that includes severe fatigue, musculoskeletal pain, sleep disturbance, depression, and cognitive problems such as difficulty with short-term memory, speed of thinking, or multi-tasking. In the absence of a direct diagnostic biomarker, PTLDS has been difficult to diagnose by physicians, and its existence has been controversial. However, our clinical research shows that meticulous patient evaluation when used alongside appropriate diagnostic testing can reliably identify patients with typical symptom patterns of PTLDS.

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

In our study, participants with Post Treatment Lyme Disease Syndrome (PTLDS) & controls were asked about presence and severity of 36 signs/symptoms over the past 2 weeks. Displayed are the 25 signs/symptoms with a statistically significant difference in severity by group (P<0.05) ordered by frequency within the PTLDS group. The nine signs/symptoms with a statistically significant difference at the p<0.001 level are indicated with an asterisk*.

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.

What are the risk factors for Post Treatment Lyme Disease Syndrome?

Risk factors for Post Treatment Lyme Disease Syndrome 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 Syndrome. PTLDS is especially common in people that have had neurologic involvement. The rates of Post Treatment Lyme Disease Syndrome 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 can also contribute to more prolonged and complicated illness.

What causes Post Treatment Lyme Disease Syndrome?

The causes of PTLDS are not yet well understood but our Center is investigating the potential roles of:

  • Infection-induced immune dysfunction or auto-immunity
  • Inflammation
  • Persistent bacterial infection or bacterial debris
  • Neural network alteration
  • Other tick-borne infections
  • Other biologic mechanisms of disease

Our research has validated PTLDS as a serious and impairing condition. However, the causes of PTLDS are not yet well understood or validated, and the term PTLDS does not mean post-infection or imply an assumption of underlying biologic mechanisms. The roles of immune dysfunction, autoimmunity, persistent bacterial infection, neural network alteration, and other potential causative biologic mechanisms of PTLDS are being investigated at our Center.

Research at our Center aims to understand the biologic drivers of all manifestations of Lyme disease so that diagnostics can be improved, and more effective treatments developed to enhance patients’ health outcomes.

Is there a cure for Post Treatment Lyme Disease Syndrome?

Currently there are no FDA approved treatments for Post Treatment Lyme Disease Syndrome. Therefore, treatments must be individualized by addressing specific symptoms and circumstances for each individual.

Late Lyme Arthritis

What is the prognosis for Late Lyme Arthritis?

Following antibiotic therapy, approximately 90% of late Lyme arthritis patients recover from extensive joint swelling, arthritis, and pain.

What happens if a patient doesn’t recover from Late Lyme Arthritis?

After extensive antibiotic treatment, approximately 10% of late Lyme arthritis patients remain symptomatic with a condition termed antibiotic refractory late Lyme arthritis. Extensive research has shown that the bacteria can no longer be found in the tissue or fluid of this subgroup of patients. Their continued swelling of the joints and pain is thought to be perpetuated by their own immune system’s autoimmune condition. Their autoimmunity continues to inflame the tissues and cause swelling and pain even in the absence of detectable bacteria.

Why are patients often referred to the Center?

Patients are often referred to the Lyme Disease Research Center for evaluation of chronic Lyme disease, an umbrella term that encompasses many different subsets of illness. Examples of defined Lyme disease subsets are Post Treatment Lyme Disease Syndrome (PTLDS), and Antibiotic Refractory Late Lyme Arthritis. The mechanisms of these Lyme disease conditions are different and effective treatments need to be tailored accordingly.

The symptoms of chronic Lyme disease are similar to and overlap with other conditions involving fatigue, pain, and cognitive symptoms. Therefore, rigorous diagnostic evaluation is necessary to determine if Lyme disease could be the trigger for ongoing disease processes or if some other disease processes are involved.

By distinguishing subsets of Lyme disease, such as PTLDS, our research program is illuminating the pathophysiology of the illness to improve diagnostics, treatments, and quality of life for patients.

USE OF THIS SITE

All information contained within the Johns Hopkins Lyme Disease Research Center website is intended for educational purposes only. Physicians and other health care professionals are encouraged to consult other sources and confirm the information contained within this site. Consumers should never disregard medical advice or delay in seeking it because of something they may have read on this website.

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**Comment**

Overall, a balanced and accurate article.  A few points for consideration:

  1. There have been treatment failures from the beginning using the mono-therapy of doxycycline.  This tactic needs rethinking for numerous reasons: pleomorphism (the shapeshifting ability of borrelia), and polymicrobialism (other pathogen involvement).  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/
  2. I like how the author states that, “for research purposes a defined subset of this condition is called Post Treatment Lyme Disease Syndrome (PTLDS).” What’s  important to understand is that this defined subset only includes patients who are diagnosed and treated early who go on to develop persistent symptoms. It does not and should not include those who were undiagnosed and untreated for months to years, which one microbiologist states is 30-40%.  By adding the two groups, a whopping 60% go onto develop chronic symptoms. To date, researches are utilizing the falsely skewed 10-20% which isn’t based in reality:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  This important fact indicates the pressing importance of this neglected group that nobody is noticing.
  3. Please note that the top reason for patients to develop PTLDS is delayed diagnosis, yet the CDC/IDSA keep pushing their worthless tests and taking a “wait and see” approach.  This tactic hasn’t worked for over 40 years yet they continue to blindly recommend this. It’s laughable if it wasn’t so serious.
  4. There are far more patients with neurological involvement than mainstream medicine has a clue of.
  5. I’m thankful the author states that one reason for PTLDS could be persistent bacterial infection or bacterial debris.  Mainstream medicine and authorities STILL are not acknowledging this. I’m also thankful they state that PTLDS is a serious and impairing condition. Now, they need to acknowledge that 60% or more suffer with this, with corresponding prioritized research reflecting the vast numbers.
  6. The authors state that there are, no FDA approved treatments for Post Treatment Lyme Disease Syndrome; therefore, treatments must be individualized by addressing specific symptoms and circumstances for each individual.”  Since this is true, why are Lyme doctors STILL being persecuted for treating people individually and outside the CDC guidelines of 21 days of doxycycline and why won’t insurance cover it? Case in point:  https://madisonarealymesupportgroup.com/2017/06/24/llmd-daniel-cameron-disciplined-by-ny-medical-authorities/  Within this article is another article in “Sciencebasedmedicine.org,” that states, “Chronic Lyme” VIP Daniel Cameron Discipled by New York Medical Authorities. The title alone should be a foreshadowing of the type of ad hominem attacks against Lyme literate doctors for decades. Expert: “He is not a “recognized leader” among board-certified infectious diseases doctors and other experts who agree that “chronic Lyme” is not a real disease and who rely on well-conducted trials showing that long-term antibiotics do not substantially improve the outcome for patients diagnosed with so-called “chronic Lyme.” Long-term antibiotics can, in fact, result in serious harm, including death, a subject our good friend Orac covered just yesterday over on Respectful Insolence. The CDC, the Infectious Diseases Society of America (IDSA), the American Academy of Pediatrics, the American College of Physicians, the Medical Letter and the American Academy of Neurology all reject the notion that “chronic Lyme” exists and that long-term antibiotics are an appropriate treatment. (Orac’s post nicely summarizes the differences between real Lyme disease and “chronic Lyme,” “a prototypical fake medical diagnosis,” and the dangers of long-term antibiotics, as have posts on SBM, here, here, here, and here.)”  
  7. Malicious articles such as the one above which strangely chastises Cameron for not being a “recognized leader” which means part of the “Good old boy club,” among infectious disease doctors is a bit ironic when you consider that due to serious medical abuse, patients have been FORCED to go to doctors willing to listen to them to perhaps learn something new.  The “well conducted” clinical trials don’t exist.  There’s serious flaws with each of them.  And people HAVE improved immensely using long-term antibiotics.  Case in point:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/  Excerpt: A founding member of the IDSA, Dr. Waisbren disagreed with their stance that Lyme is hard to get and easy to treat, is not persistent, and that IV antibiotics are too dangerous to use as a treatment option.  In his book, “Treatment of Chronic Lyme Disease,” he discusses 51 difficult cases, nearly all Chronic Lyme disease sufferers that had been misdiagnosed with everything from ALS to mental disorders. They had all been neglected by main stream medicine that was following the CDC/IDSA stringent guidelines of essentially 21 days of doxycycline.  BTW:  Waisbren’s book was written nearly a decade ago yet the IDSA/CDC infectious disease “leaders” haven’t learned a thing and continue to live in the Stone Ages.