Archive for the ‘Lyme’ Category

Review of Evidence Supporting IDSA Guidelines EM Treatment in US

https://lymediseaseassociation.org/about-lyme/research-articles/peer-reviewed-articles/review-of-evidence-supporting-idsa-guidelines-em-treatment-in-us/

Review of Evidence Supporting IDSA Guidelines EM Treatment in US

2014 ElizabethMaloneyMD
Elizabeth Maloney, MD

The IDSA guidelines for Lyme disease contain 2 recommendations for antibiotic therapy for patients with erythema migrans (EM) rashes. The first recommendation identified which antibiotics were preferred and the second specified therapy duration.

In “Evidence-Based, Patient-Centered Treatment of Erythema Migrans in the United States,” Antibiotics 2021, author Elizabeth L. Maloney, MD, reviews the US trial evidence on EM rashes, problems of the IDSA recommendations considering that evidence, and provides evidence-based patient-centered strategies for managing patients with EM.

“The EM rash is the hallmark finding of early disease,” along with other symptoms. “In light of the physical and financial costs, identifying and promoting highly effective therapeutic interventions for US patients with erythema migrans (EM) rashes that return them to their pre-infection health status should be a priority.” 

The paper states:

“when promptly diagnosed and appropriately treated with antibiotics, early Lyme disease is curable.” Untreated and inadequately treated infections can progress to long-term sequalae. Patient-centered care–defined by the National Academy of Medicine—“…is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions. Patient-centered outcomes are outcomes that matter to patients, such as reductions in symptoms or improvements in quality of life.” In recent times, patient-centered outcomes are becoming part of trial designs.

Dr. Maloney uses a Medline search with specified criteria to identify the trials conducted in the US for the named antibiotics recommended by IDSA Lyme guidelines.  There were 25 results of which 8 met the search criteria, other 17 were EM trials in Europe, disseminated disease in Europe, European antibiotic retreatment, culture difficulty, and tick bite prophylaxis. The US trials were old, were small, and 2 had high non completion rates of 40%+ and two others had single arm with 20%+ non—completion, thus Dr. Maloney indicates these should not be included to determine treatment efficacy.

The paper goes on to examine the remaining US trials, several of which used disease centered endpoints, not patient centered endpoints, and all those trials used what is currently considered outdated statistical methodology, pointing out the weaknesses of the evidence used by IDSA. In the conclusion, Dr. Maloney highlights the need for more research.

Click here to read the entire study

Click here to read Johns Hopkins Lyme Research Center Challenges IDSA Guidelines & Addresses Lyme-COVID

Click here to see video of Bransfield & Smith Discuss IDSA Guidelines

Category:

Activism, Lyme, research, Treatment

Lyme Q & A: Dental Issues, Concussion Recovery, & Life Changes

https://www.globallymealliance.org/blog/dear-lyme-warrior…help

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

June 28, 2021

I had a root canal and now my Lyme disease symptoms have flared. Is there a relationship between dental problems and Lyme?

I asked my Lyme Literate Medical Doctor (LLMD) the same question before I had my wisdom teeth removed a few years ago. I was worried that the procedure might cause my Lyme symptoms to flare. Because the oral surgeon was going to put me on antibiotics for a week after the procedure, in case of infection, my LLMD thought that medication would protect against a Lyme flare up. He was right. He did caution me, however, that a more invasive procedure like a root canal could exacerbate Lyme symptoms. Lyme is an inflammatory disease, and such a procedure can increase inflammation and potentially aggravate Lyme bacteria (spirochetes) living in the area. I recommend talking with your LLMD to see if you might need antibiotics or an anti-inflammatory regimen.

Patients experiencing oral or facial symptoms should consider whether tick-borne illness could be at play, as should their dentists. In the article “Dentists can help fight against tick-borne diseases” in the American Dental Association (ADA) News, Dr. Stacey Van Scoyoc, an Illinois dentist and member of the ADA Council on Dental Practice, states:

“Sometimes the dental patient may present nonspecific orofacial pain and headaches that can mimic temporomandibular joint point. Dentists should consider Lyme disease as a possible cause if a patient presents these or related symptoms and has no specific oral health problem.”

Does having Lyme disease make it harder to recover from a concussion?

Having Lyme disease can make it harder to recover from just about anything. You have an underlying inflammatory infection that your body is already working hard to battle, and now it needs extra energy to heal from a significant head injury. If your Lyme has crossed the blood-brain barrier and you are experiencing neurological symptoms, those could certainly be exacerbated because you now have double inflammation in your brain—from the Lyme, and from the concussion (or the concussion may have caused previous Lyme inflammation to flare).

Moreover, Lyme disease bacteria (spirochetes) love to hide out in scar tissue. When I was recovering from ACL surgery on my knee, I diligently did all of my physical therapy, but my leg was very slow to regain muscle. “This is terrible,” I remember the surgeon saying, telling me I needed to work harder. In fact, the recovery was slow because I had undiagnosed tick-borne illnesses. The muscle did eventually come back, but it took much longer than it would for an otherwise healthy person. I’ve learned that my underlying conditions generally slow down my recovery from both illness and surgery. As those conditions have improved, though, recovery times have, too, so don’t give up hope. You may want to check out my recent blog post “What Helps Improve Cognitive Function for Lyme Patients” for some ideas on helping your body recover.

I’m thinking of starting graduate school, but the last time I make a big life change, my Lyme disease relapsed. I don’t want Lyme to prevent me from pursuing my dreams, but I also want to be realistic. Do you have any advice?

Your story sounds a lot like mine. The first time I achieved remission, I went off antibiotics, moved to another state and started a new job. Three months later, I relapsed completely. It took another two years to get back to remission, and when I did, I was terrified of facing another relapse (see my “Fear of Relapse” post). Then, an opportunity arose to attend graduate school. I weighed risks and benefits. Could I manage the work load, and live on my own in a new city? I had outgrown my life in my home state, where I’d moved to convalesce. I’d made good progress in physical therapy. I had volunteered, and then taken on freelance writing jobs. I’d joined social groups. I decided that I had paced myself well enough during recovery that I was truly ready to take the next leap.

This time, I made preparations before I moved. I lined up doctors. I found local practitioners for adjunct therapies. I spoke with the Disabilities Office at my graduate school to make sure I could receive accommodations (like extensions) if needed. I explained my situation to my professors. I got in touch with friends in the area. Most importantly, I accepted that tick-borne illnesses would be coming with me on the journey; during my first move, I’d hoped to leave them behind.

My suggestion is to talk candidly with your doctor about where you are in your recovery. Does s/he think you are well enough to take this step, or might it be better to wait another year or two? With tick-borne illness, you have to keep the big picture in mind. I know how badly you want to pursue your dreams, but it’s better to wait until you’re really ready than to get so sick that you can’t pursue them at all. If you do decide to take this step, ask your doctor how you can best support yourself physically during a transition. If you’re moving to a new location, make sure you get a support network in place before you go. I’ll be cheering you on!

Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email.

Email: lymewarriorjennifercrystal@gmail.com

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For more on dental issues with Lyme/MSIDS:

Category:

Activism, Dentistry, Lyme

GLA’s White Paper on Persister Bacteria and Lyme Disease

https://f.hubspotusercontent00.net/hubfs/6034706/GLA_whitePaper_PersisterBateriaAndLD_Vol2_F.pdf Paper Here

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**Comment**

I have numerous problems with this paper – including the utilization of the PTLDS moniker and the faulty 10-20% that go on to suffer with persistent symptoms, as both are misleading and have dire consequences.

While they state persister bacteria have been documented after antibiotics in vitro, they state work in humans is inconclusive, when reality has shown a far different picture as well as the fact viable spirochetes have been found in these patients.

They state that much more work remains yet due to them downplaying the problem with faulty, low percentages – that work will never happen.  This tactic has been used for over 40 years.

It continues to amuse me that while they insist upon direct isolation of persisters in well-controlled animal experiments, the COVID-19 debacle continues to date without having this!  Once again this proves the double standard regarding Lyme/MSIDS.

And very sadly, they state that “clinical evidence does not support its efficacy” regarding prolonged treatment.  Your’s truly would not be writing this post today without this very maligned way of treating.  They also state that there is no sustained benefit in reducing chronic symptoms after initial treatment – yet here I am defying that very statement, and I’m far from alone.

Please understand, I’m not advocating a willy-nilly, indiscriminate treatment regimen.  Treating this is probably one of the most difficult things to treat.  For an example of what effective treatment looks like go here.

Category:

Activism, Lyme

Study Detects Tick-borne Illness in Teens Hospitalized for Depression

https://www.lymedisease.org/hospitalized-teens-lyme-depression/

Study detects tick-borne illness in teens hospitalized for depression

June 10, 2021

Dr. Dan Kinderlehrer

By Daniel A. Kinderlehrer MD

Last month I posted an article on this website describing Diane, a teen-age girl suffering from anorexia nervosa.1 As it turned out, she had Lyme disease and was co-infected with Babesia, Bartonella and Mycoplasma. She responded well to antibiotics and three years later she still has no evidence of an eating disorder.

Dr. Nancy Brown, a colleague, was in my office during one of Diane’s appointments, and I commented to Nancy, “Wouldn’t it be great if we could test a group of people who suffer from anorexia nervosa for tick-borne infections?”

“Well,” she told me, “I’m the medical consultant at a residential treatment center for adolescents with mental health issues. Let’s see if I can get permission to do this.”

We did receive cooperation from the residential center. In addition, IGeneX Laboratory agreed to test a dozen patients free of charge for Lyme, Bartonella, and tick-borne relapsing fever (TBRF). Moleculera Labs also generously agreed to test our patients with the Cunningham Panel. (The Cunningham Panel is a blood test which measures the levels of circulating autoantibodies associated with certain neurologic and psychiatric symptoms.)

Testing depressed adolescents

It was not difficult to get 10 volunteers at the residential center. None had eating disorders, since the center was not equipped to deal with that, but all 10 were diagnosed with DSM-5 Major Depressive Disorder, seven were additionally diagnosed with Generalized Anxiety Disorder, and three had made serious suicide attempts.

With the exception of one subject previously diagnosed with celiac disease, none had a known physical disorder. All of these teens had severe psychological dysfunction requiring intensive residential treatment—they could not hack it at home or go to school.

Here is what we found2:

  • Lyme disease immunoblot was positive by IGeneX criteria for three teens.
  • A more liberal interpretation of the test results consistent with analysis by most Lyme docs, indicated nine had antibodies to Lyme.
  • Antibodies to Bartonella were detected in three, and borderline positive in a fourth.
  • Antibodies to TBRF were detected in four subjects, and borderline positive in another two.
  • Antibodies to Streptococcus were detected in three subjects, and borderline positive in a fourth.
  • The Cunningham Panel was positive in nine of the 10 teens.
In all likelihood, nine of 10 had antibodies to tick-borne infections. And nine of 10 had evidence of autoimmune encephalitis.

Autoimmune encephalitis is the medical term for ‘Brain on Fire’: inflammation in the brain that can result in serious mood, behavioral and cognitive disorders.

PANS/PANDAS

Susan Swedo at the National Institute of Mental Health first described this condition in children who developed neuropsychiatric symptoms shortly after a strep infection. She termed it Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections—PANDAS.3,4

Not long afterwards, it became clear that other microbes besides Streptococcus can trigger autoimmune encephalitis. Hence, the name was broadened to Pediatric Acute-Onset Neuropsychiatric Disorder—PANS.

The microbes that thus far have been shown to trigger PANS include several viruses including Epstein-Barr, the common cold, influenza, and chicken pox as well as Bartonella, Mycoplasma and mold.5-7

There was a recent report out of Italy describing two boys in whom SARS-CoV-2, the virus that causes Covid-19, triggered PANS.8 It is likely, but not definitive at this time, that Borrelia burgdorferi, the Lyme pathogen, also triggers PANS.

In 2013, the PANS collaborative consortium published criteria for the diagnosis of PANS.9 These include the sudden onset of obsessive-compulsive disorder (OCD) or severely restricted food intake, without a known medical disorder that would account for these symptoms. In addition, the case definition requires two of the following seven criteria to make the diagnosis:

  • Anxiety
  • Emotional lability (mood swings) or depression
  • Irritability, aggression and/or oppositional behavior
  • Behavioral (developmental) regression
  • Sudden deterioration in school performance
  • Motor or sensory abnormalities including tics and involuntary movements
  • Somatic signs and symptoms—like sleep disturbances and bed-wetting

It is important to have clear diagnostic criteria so that researchers studying this condition are always studying the same population of subjects, but not all kids with autoimmune encephalitis will fulfill these criteria. In particular, most of my patients do not have an acute—i.e, sudden—onset of their symptoms. Instead, the onset may be stuttering or slow.

An epidemic of mental illness in adolescents?

According to the National Institutes of Mental Health, nearly one-third of all adolescents ages 13 to 18 will experience an anxiety disorder, and 8% of those will become severely impaired.10

The NIMH also reported that the prevalence of major depressive disorder in adolescents in 2017 was 13.3%, with nearly three-quarters of those becoming severely impaired.11 Suicide has replaced homicide as the second most common cause of death for teenagers ages 10 to 19 in the United States.12

In other words, we have an epidemic of mental illness in adolescents.

Our investigation was small. Ten adolescents picked at random with mental illness severe enough that they required institutionalization—nine of them had evidence of tick-borne infections and nine had evidence of autoimmune encephalitis.

Clearly there is a need for more investigation, but I suspect that many of the teens afflicted with mental illness in the U.S. are suffering from brains on fire. Their illness may present as emotional, but the cause may be organic. In the next installment I will discuss the diagnosis and treatment of PANS.

Dr. Daniel Kinderlehrer is an internal medicine physician with a private practice in Denver, Colorado, devoted to treating patients with tick-borne illness. He is the author of  Recovery From Lyme Disease: The Integrative Medicine Guide to the Diagnosis and Treatment of Tick-Borne Illness.

References

  1. https://www.lymedisease.org/lyme-bartonella-eating-disorders/#:~:text=An%20infection%20can%20cause%20an,but%20also%20trigger%20anorexia%20nervosa.
  2. Kinderlehrer DA, Brown N. Microbial Induced Autoimmune Inflammation as a Cause of Mental Illness in Adolescents. Global J Med Res. 2021;21(1):1-13.
  3. Swedo SE, Leonard HL, Kiessling LS. Speculations on Antineuronal Antibody-Mediated Neuropsychiatric Disorders of Childhood. Pediatrics. 1994Feb1; 93(2):323–6. 39.
  4. Swedo SE, Seidlitz J, Kovacevic M, Latimer ME, Hommer R, Lougee L, Grant P. Clinical presentation of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections in research and community settings. J Child Adolesc Psychopharmacol. 2015 Feb; 25(1):26-30.
  5. Breitschwerdt EB, Greenberg R, Maggi RG, Mozayeni BR, Lewis A, Bradley JM. Bartonella henselae Bloodstream Infection in a Boy With Pediatric Acute-Onset Neuropsychiatric Syndrome. J Cent Nerv Syst Dis. 2019Mar18; 11. DOI: 10.1177/1179573519832014.
  6. Frankovich J, Thienemann M, Rana S, Chang K. Five Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome of Differing Etiologies. J Child Adolesc Psychopharmacol. 2015; 25(1):31–7. DOI: 10.1089/cap.2014.0056.
  7. Tisi G, Marzolini M, Biffi G. Pediatric acute onset neuropsychiatric syndrome associated with Epstein–Barr infection in child with Noonan syndrome. Europ Psychiatry. 2017; 41(Supplement): S456. DOI: 10.1016/j.eurpsy.2017. 01.492.
  8. Pavone P, Ceccarelli M, Marino S. SARS-CoV-2 related paediatric acute-onset neuropsychiatric syndrome. Lancet. 2021;5:e19-21.
  9. Chang K, Frankovich J, Cooperstock M, Cunningham MW, Latimer ME, Murphy TK, Pasternack M, Thienemann M, Williams K, Walter J, Swedo SE, and from the PANS collaborative consortium. Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. J Child Adolesc Psychopharmacol. 2015; 25(1):3–13.
  10. https://www.nimh.nih.gov/health/statistics/any-anxiety-disorder#:~:text=An%20estimated%2031.9%25%20of%20adolescents,than%20for%20males%20(26.1%25).
  11. https://www.nimh.nih.gov/health/statistics/major-depression
  12. Curtin SC, Heron M. Death rates due to suicide and homicide among persons aged 10–24: United States, 2000–2017. NCHS Data Brief. 2019Oct;352.

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**Comment**

Very, very important work being done here with a dire need for more. Unfortunately researchers are choosing to go with the more popular and lucrative work surrounding “climate change,” despite the fact credible, independent work has been done disproving it of having anything to do with tick and disease proliferation.

Few understand the dark underpinnings of our public health ‘authorities’ and the research they pay for and control and the fact they own patents on everything from the organism, to the tests that reveal it, to the vaccines against it.

For more:

Category:

Lyme, Psychological Aspects, research

The Danger of “Waiting & Seeing” With Lyme Disease

https://www.globallymealliance.org/blog/the-danger-of-waiting-and-seeing-with-lyme-disease

The Danger of “Waiting and Seeing” With Lyme Disease

by Jennifer Crystal on June 14, 2021

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >The Danger of “Waiting and Seeing” With Lyme Disease</span>
When someone finds an engorged tick, their doctor may tell them to “wait and see” if they develop a rash or other symptoms. This approach is downright dangerous. Here’s why.

Though ticks are a year-round threat, we are in prime season right now, as blacklegged (deer) nymph ticks search for a first meal. People I know have reported pulling ticks off themselves, their children, and their pets by the dozens. “We go for a walk in the neighborhood and my dog comes back covered in ticks,” one friend told me. Even if a dog is vaccinated against Lyme, it can still bring all those ticks into the house, where they then can bite humans. Outside, ticks are everywhere: not just in the woods, but in yards, parks, playgrounds, beach grass, and yes, even cities.

We can help ward off tick bites by using good preventive measures like wearing long, light-colored clothing; putting that clothing in the dryer on high heat after coming inside; using repellent containing DEET or picaridin; spraying clothing and gear with permethrin; using a lint brush to wipe down skin and clothes; showering after spending time outside; and doing daily tick checks. Despite our best efforts, though, we are still at risk. If you should notice a bite or find the tick itself (which you can save to get tested), you have a good chance of getting diagnosed early and treated appropriately.

But this is where it gets tricky. Even when someone finds an engorged tick, their doctor may tell them to “wait and see” if they develop an Erythema Migrans (EM) rash, commonly referred to as a bullseye rash, or symptoms such as fever, body aches, or facial palsy. The doctor will not treat the person for Lyme disease unless these symptoms appear. That approach is downright dangerous, and here’s why:

  • Not everyone gets or sees a rash: We must dispel the myth that Lyme is always associated with the “tell-tale” bullseye rash. It can be. If you are lucky enough to see one of those rashes, you can be sure you have Lyme. But the reality is that less than 50% of Lyme patients get, or see, a rash at all. Others may develop the rash weeks, months, or even years after infection. And not all Lyme rashes are created equal. Mine was a series of red dots; other people get blotchy lesions. To wait for a rash to appear is to miss critical time in treating a Lyme infection early.
  • Not everyone gets the same symptoms: While there are more common symptoms of Lyme disease such as flu-like malaise, fever, and joint aches, there are over 100 possible symptoms of Lyme disease. Lyme is called the “Great Imitator” because symptoms can mirror so many other conditions, such as rheumatoid arthritis and fibromyalgia. If someone with a known tick bite isn’t treated right away and then develops more nebulous symptoms like brain fog or chronic fatigue down the road, they may easily be misdiagnosed.
  • Not everyone gets symptoms right away: Some people take weeks to develop symptoms. By then, the Lyme bacteria (spirochetes) may have disseminated to a later stage of disease, making it much more complicated to treat. Early intervention after a known tick bite can shorten overall treatment time and save someone from prolonged suffering.
  • Ticks don’t only carry Lyme: The symptoms you may be waiting for, such as an EM rash, may never develop at all because you don’t in fact have Lyme; you have a different tick-borne illness. You may not know to look for symptoms of those, such as night-sweats or hypoglycemia with babesiosis(which requires different treatment than Lyme disease). Or, you may have contracted Lyme and co-infection(s). It’s important to ask your doctor about testing for all tick-borne illnesses, not just Lyme, when you have a known tick bite. A Lyme test does not cover these co-infections; you need to test for them specifically. And if your doctor tells you, “Oh, that was a dog tick, so you don’t have to worry,” make to test for illnesses that dog ticks carry, like Rocky Mountain Spotted Fever and tularemia.
  • Tests are inaccurate: A doctor may tell you to “wait and see” what the tests results say before starting treatment. Because standard Lyme tests only look for antibodies against the bacteria, not the bacteria itself, they are notoriously inaccurate. It can take a while for someone to build up enough antibodies to show up on a test, which can dangerously delay treatment.
  • Ticks can transmit diseases faster than you think: Many doctors subscribe to the old belief that a tick needs to be attached for at least 36 hours to transmit Lyme. But it’s hard to know exactly when a tick first became attached. Each hour—each minute—that a tick is attached, the greater the chance that it will infect you. Other tick-borne illnesses such as Powassan encephalitis can be transmitted in as little as 15 minutes.

A much safer bet, rather than “waiting and seeing”, is to treat immediately with antibiotics. Even if that treatment ends up being prophylactic, it is better to be safe than sorry.

Another dangerous time to use the “wait and see” approach with Lyme disease is after a round of treatment is complete. Most Lyme Literate Medical Doctors (LLMDs) treat for 21-28 days and then make continued clinical evaluation. If the patient’s symptoms have not cleared up, they continue treating the infection, rather than waiting to see what happens. Unfortunately, Centers for Disease Control (CDC) and Infectious Disease Society of America (IDSA) guidelines only call for 10-14 days of treatment, or even just one dose of Doxycycline as prophylactic treatment. Patients who experience symptoms beyond the initial course are often told they have something else. Untreated Lyme infection can then spread further into the body and cross the blood-brain barrier, causing symptoms that become much more difficult to treat. It’s important to remember that co-infections can also complicate and prolong treatment.

If you do a web search on Lyme disease, you will find lots of conflicting information. Some sites will tell you that there is a danger of Lyme over-diagnosis, or that long-term antibiotic treatment is dangerous (it has its risks, which any good LLMD will address). In my opinion, the greatest danger with Lyme disease is the “wait and see” approach. If you get a tick bite, or if you’re treated for Lyme but have ongoing symptoms, I encourage you to reject the “wait and see” approach, and to instead be proactive. Your health is at stake!

Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email.

Email: lymewarriorjennifercrystal@gmail.com

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For more:

Category:

Lyme