Archive for the ‘Lyme’ Category

Seropositivity to Tick Endosymbiont As A Marker To Determine Tick Bite Exposure

https://www.ncbi.nlm.nih.gov/pubmed/31397213/

Seropositivity to Midichloria mitochondrii (order Rickettsiales) as a marker to determine the exposure of humans to tick bite.

Abstract

Ixodes ricinus is the most common tick species parasitizing humans in Europe, and the main vector of Borrelia burgdorferi sensu lato, the causative agent of Lyme disease in the continent. This tick species also harbors the endosymbiont Midichloria mitochondrii, and there is strong evidence that this bacterium is inoculated into the vertebrate host during the blood meal. A high proportion of tick bites remains unnoticed due to rarity of immediate symptoms, implying the risk of occult tick-borne infections in turn a potential risk factor for the onset of chronic-degenerative diseases. Since suitable tools to determine the previous exposure to I. ricinus bites are needed, this work investigated whether seropositivity toward a protein of M. mitochondrii (rFliD) could represent a marker for diagnosis of I. ricinus bite.

We screened 274 sera collected from patients from several European countries, at different risk of tick bite, using an ELISA protocol. Our results show a clear trend indicating that positivity to rFliD is higher where the tick bite can be regarded as certain/almost certain, and lower where there is an uncertainty on the bite, with the highest positivity in Lyme patients (47.30%) and the lowest (2.00%) in negative controls.

According to the obtained results, M. mitochondrii can be regarded as a useful source of antigens, with the potential to be used to assess the exposure to ticks harboring this bacterium. In prospect, additional antigens from M. mitochondrii and tick salivary glands should be investigated and incorporated in a multi-antigen test for tick bite diagnosis.

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**Comment**

This is an interesting study with future potential. Essentially they are saying since Lyme is so hard to detect – find its friends and you may find Lyme.

I’ve written about endosymbionts before, particularly Wolbachia:

https://madisonarealymesupportgroup.com/2017/07/10/wolbachia-the-next-frankenstein/

Briefly, endosymbionts are organisms living in the body or cells of another organism in a symbiotic relationshipwhich isn’t always of mutual benefit. An example of a mutualistic relationship is the protozoan endosymbionts inside a termite which help it to break down the wood it eats.
However, in the case of Wolbachia, while the benefit between itself and the worms it lives in may be mutualistic, it’s caused harm in dogs being treated for heart worm. Heart worm medication causes Wolbachia to be released into the blood and tissues causing severe Inflammation in pulmonary artery endothelium which may form thrombi and interstitial inflammation. Wolbachia also activates pro inflammatory cytokines. For human Lyme/MSIDS patients this could translate out to a similar result when they are treated for worms, which ticks also carry.
What I find interesting here is that both Midichloria and Wolbachia are in the same subclass of Rickettsidae and order Rickettsiales. Guess who else is in these groups?
  • Rickettsia
  • Ehrlichia
Both of which cause a variety of human and animal illness.

The question of course is, could these supposedly harmless endosymbionts be responsible for more than they are given credit for? Testing for them may not only reveal that Lyme is present but in fact that they are contributing to the problem. Sounds like an exciting field of discovery.

IDSA Guidelines Deny Lyme Diagnosis to Most of the USA

https://www.lymedisease.org/guidelines-deny-lyme-diagnosis/

15 AUG 2019
By Dorothy Kupcha Leland
Question: why does an organization that is supposedly set up to cure sick people—the Infectious Diseases Society of America—spend so much time and effort to deny access to proper medical care to people unfortunate enough to contract Lyme disease?
For example, the latest version of the IDSA’s Lyme treatment guidelines basically says this: Unless you manifest an erythema migrans rash AND live in one of a handful of states that have been determined to be “endemic” for the tick-borne illness, you are SOL.

Even though Lyme-infected ticks can be found all over the country…

Even though it’s well documented that not everyone with Lyme gets a rash…

Even if you have a known tick bite, a bull’s-eye rash and a lot of other symptoms associated with Lyme disease…

you shall not be diagnosed with Lyme.

Do not pass go, do not collect antibiotics, and do not let the door hit you on the way out.

“Lucky” endemic states?

Yet, even if you are in one of the “lucky” endemic states and thus can get diagnosed, your prospects aren’t much better.

The guidelines allow you only a short course of antibiotics, offer no re-treatment options if you remain symptomatic, and make no allowance for clinical judgement on the part of individual doctors. (Doesn’t the IDSA even trust its own members?)

Why does all this matter so much? Because although the IDSA claims these are just “recommendations,” in fact, its guidelines are often viewed as mandates by physicians, state health officials, medical boards, insurance companies, and the courts. The 2006 IDSA Lyme guidelines have been used to deny treatment, insurance coverage, and medical licenses for years.

They’ve even been adopted by health departments in other countries, making it hard for people with Lyme to get diagnosed in those places, too.
Bottom line: these guidelines will have a devastating impact throughout the world. By making it so difficult for people to get diagnosed in the early acute phase of the disease—when the chance of successful treatment is so much greater—the IDSA condemns huge numbers of people to lifelong health problems.

And, if you think the guidelines offer any help for diagnosing late Lyme disease? Fuggedabout it!

The IDSA has no use for “non-specific” symptoms of Lyme—such as fatigue, pain or cognitive impairment—which are the kind of symptoms folks with late Lyme tend to have. The guidelines simply disregard them.

Public comment

In June, the IDSA published a draft of its proposed guidelines and supporting documents on its website and invited public feedback by August 10. Regrettably, the organization “protected” the content, making it impossible to download, copy or search almost 300 pages of material.

Patients and even journalists noted that it was difficult to study the document and asked the IDSA to make it more accessible to readers. At first, the organization refused. Finally, the day before the advertised deadline, the group relented. The IDSA made the document downloadable and extended the comment period until Sept. 9.

Over the past two months, Lorraine Johnson , CEO of LymeDisease.org, and Dr. Betty Maloney, of the International Lyme and Associated Diseases Society (ILADS), have analyzed the IDSA guidelines and prepared a 58-page rebuttal.

Their comments have been endorsed by more than 30 patient advocacy groups, including the national Lyme Disease Association and the Bay Area Lyme Foundation.

Together, the groups formed the “Ad Hoc Patient and Physician Coalition,” and submitted their objections to the IDSA on August 8. (Before we knew the deadline would be extended.)

Read our rebuttal: Ad Hoc Patient-Physician Coalition Comments

See the list of Lyme patient organizations that have endorsed the comments. Signers to comments

Read, download, and comment on the IDSA Lyme guidelines.

If your Lyme advocacy/support group would like to be listed as an endorser of our comments, please send an email to me, dleland@lymedisease.org, with contact information for your group.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

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For more:  https://madisonarealymesupportgroup.com/2019/08/11/idsa-extends-comment-period-allows-downloads/

https://madisonarealymesupportgroup.com/2019/07/09/idsa-lyme-disease-treatment-management-business-as-usual-leaves-those-with-persisting-symptoms-to-suffer-die/

August WLN Newsletter

At_a_Glance-August_2019 Go here for Newsletter

Highlights:

  • WLN needs volunteers. See link for details
  • Polly Murray, the woman who reported the unusual illness in her community which later was determined to be Lyme disease, passed away on July 16, 2019.
  • The new Lyme clinic in Northern WI is raising money and hopes to open soon
  • Bay Area Lyme Foundation has restarted their nationwide tick testing program.
  • Bipartisan Lyme bills are being considered in Wisconsin.
  • A reminder to consider participating in MyLymeData
  • A New source of financial aid for Lyme patients
  • Help spread education in WI by purchasing pretreated socks from WLN

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For more:  

Tick-born Illness Center of Excellence:  https://madisonarealymesupportgroup.com/2019/01/11/wisconsin-tick-borne-illness-center-of-excellence/

https://madisonarealymesupportgroup.com/2018/12/16/tick-borne-illness-center-of-excellence-set-to-see-patients-in-early-2019/

https://www.howardyoungfoundation.org/Howard-Young-Foundation-In-the-News/tick-center.html

https://madisonarealymesupportgroup.com/2019/07/02/wisconsin-public-radio-on-tick-borne-illness-center-of-excellence/ Interview with Andy Kogelnik, the doctor in charge of the new center.

Wisconsin Lyme bills:  https://madisonarealymesupportgroup.com/2019/05/29/lawmakers-create-bills-to-bite-back-against-lyme-disease-wisconsin/

https://madisonarealymesupportgroup.com/2019/08/16/public-hearing-video-on-wi-lyme-bills-315-316/

https://madisonarealymesupportgroup.com/2019/06/30/lawmakers-want-to-combat-lyme-disease-with-more-signs-insect-repellent-in-public-parks/

 

 

 

Doctor’s Advocates Frustrated By Inaction on Tick-borne Diseases Report

https://poststar.com/news/local/doctors-advocates-frustrated-by-inaction-on-tick-borne-diseases-report/article

Doctors, advocates frustrated by inaction on tick-borne diseases report

5cc360779d9a8.image

Ticks spread the widest variety of diseases that are harmful to humans, including Lyme disease. This is an image of a blacklegged (deer) tick nymph. 

Congress has had over six months to review a federal report on tick-borne diseases, which includes action items for prevention, diagnosis and treatment, and both doctors and researchers are frustrated that nothing has been done so far.

The report was written by a working group under the U.S. Department of Health and Human Services to address the growing number of tick-borne diseases in the United States. It was delivered to Congress in December.

The diseases, especially Lyme disease, are wreaking havoc on the Northeast and New York. About 400,000 new cases of Lyme disease are reported nationwide annually.

About one-fourth of those cases are from New York alone.
Deadlier diseases are also spreading. Just last month, a Kingston resident died of Powassan virus.
Despite the trend in New York, lawmakers did not put funding in this year’s state budget for tick-borne illness research, either.
5c82ef099a60e.image
The $1 million the state Senate had put back into the budget for studying Lyme disease and other tick-borne illnesses is no longer there.

The seemingly lack of action by state and federal lawmakers has frustrated advocates like Holly Ahern, an associate professor of microbiology at SUNY Adirondack. Ahern was also on the testing and diagnostic subcommittee of the federal tick-borne disease working group.

She was approached by the New York State Academy of Family Physicians, and Ahern and the academy’s director, Barbara Keber, wrote an op-ed column for Newsday, calling for a multi-billion dollar “national public-private partnership — an initiative that must address more than just Lyme disease and must go beyond the current low-impact strategy of telling the public to beware of ticks, wear white socks or shower after being outdoors.”

“This wasn’t just a ‘sit around and do a report’ kind of body,” Ahern said about the working group, in a phone interview Thursday. “This was, ‘Do a report and make recommendations and do what you find.’ … With that in mind, there’s accountability there. We sent the report to Congress, and Congress should take that report and should be acting on that.”

5b117d388d743.image
The modern history of Lyme disease starts with an outbreak in the early 1970s in Lyme, Connecticut of a mysterious illness that afflicted chil…

It isn’t often that physicians and advocates work together when it comes to Lyme disease, Ahern said. She was a bit surprised when the New York State Academy of Family Physicians reached out to her with similar frustrations about the lack of action.

Keber, who is a physician at Glen Cove Hospital, said doctors face many challenges when it comes to diagnosing and treating tick-borne illnesses.

The Challenge of Diagnosing Lyme Disease

https://www.nytimes.com/2019/07/29/well/family/the-challenge-of-diagnosing-lyme-disease.html

The biggest problem is that there is no way to test, unequivocally, for the presence of the bacteria that cause the disease.
CreditCreditiStock by Getty Images

Lyme disease is on the rise. The 30,000 cases reported annually to the Centers for Disease Control and Prevention by state health departments represent only a fraction of the cases diagnosed and treated around the country. About half the cases occur in people under the age of 21, and boys from 5 to 9 years old are the most commonly affected group, possibly because they spend a good deal of time outdoors.

A recent article in The New York Times about a child who was treated for Lyme disease and did well, offering a reassuring message about relatively straightforward cases of the infection, drew more than 700 reader comments, many of them angrily denouncing the author and predicting medical complications to come for her son. Some responses reflect the frustrations of people who feel they have struggled for years with persistent and recalcitrant symptoms from the infection.

The condition can be challenging to treat, in part because it is not always easy to get the diagnosis right the first time around. The biggest problem is that there is no reliable biomarker for Lyme, no way to test, unequivocally, for the presence of the bacteria, Borrelia burgdorferi, which are transmitted by tick bite and cause the disease.

You can make a diagnosis of acute Lyme disease by seeing the characteristic rash, erythema migrans, which at its most classic looks like a target. But it doesn’t always look like that, and it can be hidden in the hair, and it doesn’t show up nearly as clearly on darker-skinned people.

A large number of affected patients don’t have the rash,” said Dr. Lise Nigrovic, a pediatric emergency physician at Boston Children’s Hospital.

The blood tests we have don’t test directly for the bacteria, but instead test for the body’s antibody response. When you hear people talk about sending a “Lyme test” or a “Lyme titer,” what they are sending is a two-tiered test, looking to see whether the body is making antibodies to that bacteria. For that reason, the test will be negative early on during the infection, because it takes time for the immune system to mount this defense.

So the Lyme test is not helpful in the earliest stages of infection — which is when you would ideally like to start treatment. Not only that, it takes a while to get the results.

“For me as an emergency room physician, none of the tests come back in rapid enough time to make a decision,” Dr. Nigrovic said. She makes treatment decisions on the basis of symptoms, such as meningitis or swollen joints, she said, and that also means deciding how aggressively to pursue alternative diagnoses — for example, deciding whether a swollen knee needs to be surgically drained or looking for other possible infections: “In my world, it’s like, O.K., do I tap the knee, let the orthopedist take the kid to the O.R. when it’s probably just Lyme?”

And the increase in Lyme should remind us that ticks can carry other infections as well.

If a different infection is actually causing the symptoms, starting antibiotics for Lyme can mean partially — that is, inadequately — treating something else that could be potentially dangerous. The acute presentation of Lyme includes facial nerve palsy, fainting and swollen joints, especially the knee, but also meningitis, with fever, headache and stiff neck.

“If you recall a tick bite, that’s an important thing to take into account,” Dr. Nigrovic said. So it’s routine to ask about that, in an emergency room or a doctor’s office. Even so, she said, in a studythat she and her colleagues published this year, only one out of five children who end up diagnosed with Lyme could recall a tick bite. The nymphal stage ticks that transmit Lyme are so small, she said, that often they are not noticed. “If they don’t recall being bitten by a tick, we really should think about Lyme disease anyway if they’re in an endemic area.”

Dr. Nigrovic works to educate medical personnel in endemic areas, like New England and the upper Midwest, to think about the diagnosis. “If you do have Lyme, you want to have it diagnosed early,” she said. Doctors need to think about it, to send the test, and to bear in mind that if the test is negative, it may be too early in the infection for antibody to be present, so the child may need to be retested. Medical people not working in endemic areas may be less likely to consider the diagnosis — so parents need to be sure that any recent travel is part of the conversation.

And it’s not enough to say that you should always send the test, and that a doctor who doesn’t is somehow missing something.

Lyme titers can be negative early in infection, when the bacteria are present, and they can also be positive when there are no bacteria present.

For people with long-term or perplexing symptoms, who may get a Lyme titer done as part of a check-all-the-boxes work-up, a false positive may draw attention away from the need to diagnose some other serious disease like multiple sclerosis, lupus or rheumatoid arthritis.

A study published in February using data from the Air Force health system concluded that “Lyme disease serological tests were overused in a large health care system, and positive results were frequently misinterpreted, leading to misdiagnosis and widespread antibiotic misuse.”

The study examined all the positive Lyme serologies from 2013 to 2017 across the entire Air Force — including service members, retirees and their families in the United States. The researchers were able to review 212 tests, questioning whether the patients met any of the following four criteria: they continued to be symptomatic but never developed the long-term positive antibody, called IgG; they had no travel history to areas with Lyme; they had no specific symptoms; they were retested within 30 days and were negative.

Of the 212 cases, 113 met at least one of those criteria and 80 met two or more, suggesting that many of the patients did not really have Lyme disease.

To raise the issue of false positives is not in any way to doubt or blame patients, said the study’s lead author, Dr. Bryant Webber, assigned to the United States Air Force School of Aerospace Medicine, which is part of the Air Force Research Laboratory.

“We should feel great sympathy for people experiencing chronic debilitating symptoms,” Dr. Webber said. “We have to figure out why.”

The key takeaway, Dr. Webber said, was that with a disease that has great geographic heterogeneity, it’s very important that clinicians think carefully about how to use — and interpret — the test. This brings up some basic epidemiologic concepts, the sensitivity of the test (how many people who have the infection will test negative) and also the specificity (how many people who don’t have the infection will test positive).

The positive predictive value of a screening test is the probability that someone who has a positive test actually does have the infection — that is, that a positive is a true positive. And the problem is that for any screening test, the positive predictive value depends on the prevalence of the infection.

In a high prevalence area, where 10 percent of the population might have Lyme, Dr. Webber said, the positive predictive value of the test might be 85 percent, while in a low prevalence area, where only 0.1 percent of the population is infected, the positive predictive value of the test might drop to 5 percent. “And this is the exact same test done by the exact same laboratory, the exact same technicians rating the immunoblots.”

So the challenge for doctors is that it’s really important to have an appropriate index of suspicion, to think of Lyme and ask the exposure questions and treat when the clinical story is right. It’s important to send the test and explain to parents what the complexities of interpreting the test can be — but it’s also really important not to decide on Lyme too quickly and thereby miss another diagnosis.

“We really do need improved diagnostics for Lyme,” Dr. Webber said.

When a case is not clear cut enough to warrant treatment just on the basis of symptoms, Dr. Nigrovic said, an emergency room doctor who sends the test needs to explain the importance of follow-up; children need to be seen by their regular doctors to discuss the lab results, and may need to be retested later on, even if the test is negative.

“There are unanswered questions, we really have to invest in good high quality research,” Dr. Nigrovic said. “If we apply science and invest resources, I think we’re going to solve this and really help improve human health.”

Most important, be vigilant about prevention. Use protective clothing. Use insect repellent. “If you’re in a Lyme endemic area, do tick checks at the end of the day,” Dr. Webber said. “The Lyme ticks have to be attached for 48 hours to transmit the Borrelia.”

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**Comment**

Nope – ticks DO NOT have to be attached for 48 hours to transmit Lyme or any other infection. A minimum time has NEVER been established but some have been infected in a matter of 4-6 hours:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

The study by Webber has hurt patients by instilling fear in doctors and making them worry they are over-diagnosing Lyme disease:   https://madisonarealymesupportgroup.com/2019/03/04/seriously-more-research-utilizing-blood-testing-for-bb-when-it-cant-tell-active-past-or-reinfection/

Regarding false positives,

“If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.” -Dr. Alan MacDonald

Quit trying to downplay this pandemic that is sweeping through like a modern-day plague.  It’s real, and it’s not going away.

THE EMPEROR HAS NO CLOTHES ON!

More on testing:  https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/  Excerpt:

One has to wonder why Yale didn’t want to use a test that they patented that would capture the vast majority of lyme patients.
HOWEVER AS I SEE IT IF THEY UTILIZED THIS TEST TO VALIDATE THEIR LYME VACCINE THE RESULTS WOULD SHOW THAT THEIR SO CALLED VACCINE WAS IN FACT THE OPPOSITE OF A VACCINE AND INDUCED THE VERY DISEASE IT WAS SUPPOSED TO PROTECT THE PERSON FROM, AS WAS THE CASE FOR MANY PEOPLE WHO WERE INJURED BY THE FIRST LYME VACCINE LYMERIX WHICH WAS TAKEN OFF THE SHELF.

I can not fathom any other reason why they would not use a test they owned that has 96% accuracy overall and 100% specificity.

The answer can only be fraud.

 

GLA Response to Proposed IDSA/AAN/ACR 2019 Draft Lyme Disease Guidelines

https://globallymealliance.org/gla-response-to-proposed-idsa-aan-acr-2019-draft-lyme-disease-guidelines/

lyme-disease-guidelines_gla_idsa

The Infectious Diseases Society of America (IDSA), along with the American Academy of Neurology (AAN), and the American College of Rheumatology (ACR), recently published a public request for comments on the “2019 Draft Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease.” Below is the official response from Global Lyme Alliance (GLA).

The 100-page guidelines document attempts to cover various aspects of Lyme disease, including prevention, acute Lyme disease, neurological Lyme disease, co-infections, and more. GLA purposefully focused on seven (7) specific areas of the Draft Lyme Disease Guidelines to comment on. The 7 areas are handpicked for two key reasons: they represent the most glaring oversights and omissions in the guidelines and there is strong scientific evidence to refute them.

GLA focused its comments on 1) the overall misses of the guidelines, 2) Lyme disease diagnostics, 3) tick bites and prophylactic treatment, 4) neurological Lyme disease, 5) post-treatment Lyme disease, 6) treatment for persisting Lyme infections, and 7) chronic Lyme disease.

1 – GENERAL COMMENTS

General comments on entire draft, pages 2-69, lines 45-1605: Throughout the 2019 draft revised guidelines, an overriding concern is the generation of false positive diagnoses and misattribution of symptoms to Lyme disease. In contrast, there is little, or no concern voiced about the possibility of false negative diagnoses and misattribution of Lyme disease symptoms to other etiologies. Obviously, all patients, whatever their ailment, should be accurately diagnosed in a timely manner. Testing methods more sensitive and reliable than the CDC standard two-tier test (STTT), as concluded by 40 Lyme disease academic and government specialists attending a Banbury Conference at Cold Spring Harbor Laboratory, and a year later by the Tick-Borne Disease Working Group, are desperately needed to differentiate between those who do and those do not have Lyme disease. Individuals suffering from Lyme and other tick-borne diseases (TBDs) who are not promptly diagnosed are likely contributing, at least in part, to the accumulation of patients suffering from post-treatment Lyme disease syndrome(PTLDS). Because of the severe consequences of missed or delayed diagnosis of Lyme disease, it is extremely important to minimize false negative diagnoses as well. Specific guidance on how best to avoid false negative diagnoses would be invaluable to medical care providers.

2 – LYME DIAGNOSTICS

Diagnostic Testing for Lyme disease, page 10, lines 228-229: It states that “IgG seronegativity in a patient with prolonged symptoms (months to years) essentially rules out the diagnosis of Lyme disease…”. This is only true if the patient with prolonged symptoms has no history of other objective, clinical measures of Lyme disease. Also, it is noteworthy that research has shown that seroreactivity to Borrelia burgdorferi antigens varies between individuals and during the course of disease within an individual. Therefore, a static test at one point in a dynamic disease process is a poor diagnostic tool. The IDSA/CDC criteria requiring that five of 10 IgG bands be present for positive diagnosis does not make sense immunologically as it suggests that a patient with only four bands does not have Lyme disease. How does one then explain away the presence of four distinct antibodies highly specific in their ability to recognize B. burgdorferi antigens? Furthermore, work published by researchers at Northeastern University and Johns Hopkins University have shown in vitro and in vivo (in a mouse model of Lyme borreliosis), respectively, that at different stages of growth B. burgdorferi expresses a distinct repertoire of antigens and degrees of antibiotic tolerance. While in vivo studies are ongoing to identify these persister forms in patients, it is premature to dismiss the possibility that persisters expressing variant antigens, and the antibodies they elicit, exist in PTLDS patients. Therefore, the Western immunoblot of the CDC standard two-tier test (STTT) may not include the full repertoire of antigens recognized by patients with prolonged symptoms. Their absence from the STTT could result in late stage patients failing to meet the “five of 10 IgG bands” criterion for a positive diagnosis. As the field transitions from use of the STTT to a modified two-tier test (MTTT) this same concern about whether the ‘correct’ antigens are targeted remains.

Another factor to consider is that continued B. burgdorferi-specific IgM reactivity has been observed in IgG seronegative patients. This scenario is confusing, because it can lead to a false positive Lyme diagnosis. However, there also are IgM-positive/IgG-negative patients who were previously diagnosed with Lyme disease, based upon presentation of erythema migrans or other CDC criteria. The Johns Hopkins University SLICE studies suggest that a diversity serological profiles exist in PTLDS patients; these include those who are IgM-positive/IgG-negative when tested months after cessation of treatment. In an initial case series of 60 patients, while 43% were IgG-positive, 11% were IgM-negative. Among these IgM-negative patients, most were IgG-negative as well. In short, the lack of B. burgdorferi-specific IgG does not necessarily preclude continued disease just as the continued presence of B. burgdorferi-specific IgM and/or IgG is not always indicative of active infection. Acknowledgement of these important, albeit nuanced, facts is absent from the revised guidelines.

3 – TICK BITES AND PROPHYLACTIC TREATMENT

Tick bites, prevention, and prophylaxis of Lyme disease – What diagnostic tests should be used following tick bite?, pages 19-20, lines 453-467: It states, “We recommend against testing for B. burgdorferi in an Ixodes tick following a bite”. While true that the presence of a pathogen does not reliably predict the likelihood of clinical infection, there still is valuable information to be gained by testing ticks. Primary care physicians, even in Lyme-endemic areas, are not always familiar with the tick species common to a given location or the pathogen(s) they may carry. The stated rationale for the recommendation not to test is that “Even in areas that are highly endemic for Lyme disease, patients presenting with an Ixodes tick bite have a low probability of developing Lyme disease…”. This statement is not referenced and is unsupported by the fact that in highly endemic areas, in the northeastern U.S. in particular, the carriage rate for B. burgdorferi can be 50% or greater and such high carriage rates correlate with a higher incidence of Lyme disease. Tick removal and sending it for testing is a relatively rare event and thus should not contribute significantly to unnecessary antibiotic prescriptions. A major benefit to tick testing is that if no pathogens are found, this information would put the patient’s mind at ease.  If instead, the tick tests positive for one or more pathogens, this will focus the physician’s and patient’s attention on what symptoms to look for and better inform a treatment strategy if such symptoms arise.

The guidelines also suggest that “Anticipatory guidance is recommended so that a prompt diagnosis of Lyme disease (as well as other Ixodes tick transmitted infections) can be made should a patient develop symptoms”. However, given the inadequate familiarity most physicians have regarding ticks and tick-borne agents in their area, let alone in an area(s) to which a patient may have traveled and been bitten, there is no basis for thinking such anticipatory guidance can be provided. It is hard to rationalize why the guidelines would advocate for physicians and patients to make decisions having less rather than more information in hand, especially when the benefits of a prophylactic single dose of Doxycycline are substantial and the risks negligible.

4 – NEUROLOGICAL LYME DISEASE

Neurological Lyme disease – For which neurological presentations should patients be tested for Lyme disease?, page 36, lines 840-841: It states that “In patients with cognitive decline the guidelines recommend against routine testing for Lyme disease.” Global Lyme Alliance vehemently disagrees with this statement because it does not take into consideration the extensive evidence in peer-reviewed medical journals describing the cognitive decline experienced by Lyme neuroborreliosis patients. Such studies include patients with PTLDS, as defined by the IDSA-proposed case definition, who experience cognitive decline as well as PTLDS patients with neuropsychiatric symptoms linked to neuroimmune responses. This latter reference also argues against the guidelines’ claim that “No studies suggest a convincing causal association between Lyme disease and any specific psychiatric conditions”. If patients present with otherwise unattributable cognitive decline, and they live in a Lyme-endemic area, why should a physician not consider Lyme disease in their differential diagnosis? To not do so risks a missed/delayed diagnosis, and it is well-established that the earlier the treatment for Lyme disease is initiated the more positive the prognosis for recovery and cure. It also is recognized that cognitive symptoms can vary depending on a patient’s age, so a “one size fits all” statement that patients with (otherwise) unexplained cognitive decline should not be tested for Lyme disease seems at odds with a careful process of differential diagnosis and best-practice medical care.

5 – POST-TREATMENT LYME DISEASE

Prolonged symptoms following treatment of Lyme disease, page 61, lines 1412-1419: Reference is made to studies of “patients appropriately diagnosed and treated for Lyme disease” who describe either “persisting or recurrent fatigue, musculoskeletal pain, neurocognitive and other non-specific subjective symptoms”.  These are in fact patients clinically defined by Rebman et al. as having PTLDS and yet reference to this seminal study and specific mention of this PTLDS patient population is missing and should be included in the body and bibliography of the guidelines. In this same section it states that long-term “symptoms appear to subside over time…”. For patients suffering from PTLDS, most continue to have debilitating symptoms. In fact, a Dutch study found an average of 1.7 disability-adjusted life years lost due to persisting symptoms attributable to Lyme, and even longer for some patients.

 6 – TREATMENT FOR PERSISTING LYME INFECTIONS

Prolonged symptoms following treatment of Lyme disease – Should patients with persistent symptoms following standard treatment of Lyme disease receive additional antibiotics?, pages 62-63, lines 1445-1449 and 1464-1468: Four randomized, controlled trials are cited as evidence against repeated antibiotic treatment (references #317, 321, 319). A careful statistical analysis of the trials and their design calls into question the conclusion that repeated antibiotic treatment has no benefit. DeLong et al. showed that two trials conducted by Klempner (reference #317) had sample sizes too small to detect true minimum clinically-important differences, particularly in SF-36 scores. The guidelines state that in study by Fallon et al. (reference #321) “A cognitive index score at week 24 did not differ between treatment and control groups.” While true that objective measures such as cognitive test results did not show differences between PTLDS patients and controls, it is important to note that PTLDS patients in the study had to invest considerably more effort to achieve the same test scores. This would argue against the notion “that this phenomenon, in whole or in part, represents anchoring bias…”. Additionally, the authors did note a positive effect on fatigue, similar to that observed in the Krupp trial (reference #319), and Fallon and co-authors highlighted the need for further study. In reviewing these clinical studies, DeLong et al. concluded that “primary outcomes originally reported as statistically insignificant were likely underpowered.” At the very least, DeLong’s analysis should be cited in the IDSA guidelines as evidence that further study of repeated antibiotic use should be very carefully designed, executed, and interpreted.

Regarding continued or repeated antibiotic treatment for persistent symptoms, the guidelines state that “A body of literature conducted in animal models has raised hypotheses of microbiological persistence”. While correct, this statement is wholly disingenuous as it fails to reference any of the studies and, worse, neglects to acknowledge that experimental results are presented that support the hypotheses put forward. It also is stated that “Moreover, animal models cannot reproduce the human experiences of fatigue and pain, and it is unlikely that any animal study can give reliable insight into the biology of humans experiencing such symptoms following treatment of Lyme disease.” Again, this statement neglects a significant body of literature describing animal models of human fatigue and chronic pain.  Such studies have been instrumental in advancing our understanding of the pathogenesis of these human conditions and have spurred the development of novel treatments. This statement also fundamentally misrepresents the intent of the diverse animal studies conducted that provide evidence of persistence of spirochetes post-antibiotic treatment of infected animals. The purpose of using animal models as articulated by Monica Embers, Ph.D. (Division of Bacteriology and Parasitology, Tulane National Primate Research Center, Tulane University Health Sciences Center) is “to understand the etiology of post-treatment Lyme disease syndrome (PTLDS), namely whether or not the spirochetes persist post-treatment and could thus contribute to chronic symptoms.” Symptoms experienced by PTLDS patients are not restricted to fatigue and pain, so one cannot reasonably discount the results of animal findings supporting spirochetal persistence because they are purported not to recapitulate all the symptoms experienced by humans.

Recent human evidence that continued bacterial presence may contribute to long-term symptoms was published by Jutras et al. in a 2019 PNAS article. They found that B. burgdorferi peptidoglycan, a component of the cell wall, was recovered from 94% of synovial fluid samples from Lyme arthritis patients, with specific IgG responses. Many of these patients had previously been treated with antibiotics. As peptidoglycan is shed from actively growing live bacteria, it’s at least plausible and worth further inquiry to study whether bacteria persist in these patients. If not, one is left with a less plausible explanation that foreign bacterial antigens must remain in inflamed tissues for weeks, months, or even years after (presumed) effective antibiotic-mediated killing of B. burgdorferi. With such intriguing findings at least hinting at the possibility of persistent organisms in Lyme disease patients, the authors of the revised guidelines should consider specifically referencing these animal and human studies rather than covering the entire topic by citing one publication (reference #320) and summarily discounting the results presented in so many other peer-reviewed scientific journals.

7 – CHRONIC LYME DISEASE

Prolonged symptoms following treatment of Lyme disease – Chronic Lyme disease, page 64, lines 1474-1479: It states that “The term ‘chronic Lyme disease’ as currently used lacks an accepted definition for either clinical use or scientific study, and it has not been widely accepted by the medical or scientific community”. Although this statement is correct with respect to the lack of an accepted clinical definition, at least 68 publications in peer-reviewed scientific and medical journals spanning 1985 to 2019 describe the chronic infectious and persistent nature of Lyme disease. While treatment of patients with Doxycycline or other standard-of-care antibiotics is quite effective when provided within the first few weeks of infection, no clinical studies have demonstrated complete clearance of spirochetes; just elimination of symptoms for some, but not all patients (i.e., PTLDS patients). When early treatment is ineffective or initial diagnosis is delayed, B. burgdorferi can avoid pharmaceutical and/or immune clearance and spirochetes have an opportunity to disseminate and cause persistent disease. Literally a dozen or more bacterial pathogens are capable of establishing persistent infection and associated chronic disease. It would be truly remarkable if B. burgdorferi were unable to do the same. To our knowledge, there is no scientific or medical evidence to suggest they are incapable.

Whether persistent disease is synonymous with persistent infection is an important scientific question worthy of objective consideration and further careful investigation, rather than recrimination, disparagement and dismissal. The revised guidelines would stand on firmer scientific/medical footing were it to acknowledge that the question of persistent disease vs. infection is still an open question, rather than suggesting the latter has no evidentiary support whatsoever.

To conclude, the content and bibliography of the 2019 revised IDSA guidelines fails to acknowledge evidence or reference published scientific and medical studies that could and should convey a more nuanced understanding of the complexities of Lyme disease diagnosis, symptomatology, treatment, and treatment failure. A more inclusive, open-minded, and informed approach to conveying information can only benefit the Lyme disease physician and patient community, as it will better serve to enhance co-operation, reduce controversies that divide the IDSA and ILADS ‘camps’, and ultimately reduce the likelihood of false negative and false positive diagnoses.

Learn more about important GLA-funded peer-reviewed Lyme disease research, ranging from basic science, treatment, to chronic Lyme disease.

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**Comment**

I all I can say is a hearty AMEN!

For more:  https://madisonarealymesupportgroup.com/2019/08/11/idsa-extends-comment-period-allows-downloads/

https://madisonarealymesupportgroup.com/2019/08/11/natcaplymes-response-to-updated-lyme-disease-guidelines-states-they-are-based-on-outdated-and-discredited-studies/

https://madisonarealymesupportgroup.com/2019/07/09/idsa-lyme-disease-treatment-management-business-as-usual-leaves-those-with-persisting-symptoms-to-suffer-die/

https://madisonarealymesupportgroup.com/2019/06/27/idsa-aan-acr-2109-draft-lyme-guidelines-public-comments-allowed-until-aug-10-2019/

https://madisonarealymesupportgroup.com/2019/07/22/idsas-insincere-request-for-guidelines-feedback/

 

Am I Losing My Mind, Or Is It Lyme Disease?

https://www.amenclinics.com/blog/am-i-losing-my-mind-or-is-it-lyme-disease/

Am I Losing My Mind, Or Is It Lyme Disease?

AM I LOSING MY MIND, OR IS IT LYME DISEASE?

Do you feel like you’ve got brain fog? Are you having trouble with problem-solving and decision-making? Is it getting harder for you to concentrate or pay attention? Are you struggling with memory problems? If so, you could be feeling like you’re losing your mind.

If you’re like most people, you might head to your primary care physician to complain about these issues. In some cases, you might be told it’s just part of the normal aging process, you might leave with a prescription for ADD/ADHD medication, you might get a recommendation to visit a psychiatrist, or you might be told you have Alzheimer’s disease. It’s highly unlikely, however, that you will be tested for Lyme disease.

That’s what happened to actor and singer-songwriter Kris Kristofferson. For years, he was told he was suffering from Alzheimer’s disease or some other form of dementia. His memory continued to deteriorate, and he was taking numerous medications. Eventually, the Hall of Fame singer went to Dr. Mark Filidei, an integrative medicine doctor who diagnosed Kristofferson with Lyme disease and treated him with antibiotics and hyperbaric oxygen therapy. After a few treatments, the singer reportedly told his wife, “I feel like I’m back,” and has done much better.

What is Lyme Disease?

Lyme disease (Borrelia burgdorferi) is a bacterial infection that is caused when a person gets bitten by an infected black-legged tick, or deer tick as it is commonly known. However, many people with Lyme disease don’t recall being bitten by a tick and who did not get the typical “bull’s-eye” rash that is considered a telltale sign of the infection. When left untreated, the infection can cause devastating, life-changing issues.

Psychiatric Symptoms of Lyme Disease

All of the neuropsychiatric issues mentioned above are considered symptoms of Lyme disease. In fact, 70% of people with Lyme disease say they experience negative changes in memory and mental sharpness. In some people, Lyme disease can also cause paranoia, mania, obsessive compulsive tendencies, anxiety, depression, and hallucinations. But many healthcare professionals are unaware of the debilitating psychiatric effects of the disease. For this reason, many people are treated with medications that don’t help, and in many cases, produce harmful side effects that make things worse.

How is Lyme Disease Diagnosed?

Lyme disease is notoriously difficult to diagnose. When laboratory testing for the infectious disease is performed by mainstream labs using the standard “Western blot” test, it can often give a false-negative result. If your results are negative, you could still have Lyme disease. It’s important for testing to be done at specialty labs that are better trained to detect the disease.

Because lab testing is not always definitive, Lyme disease is typically diagnosed by a “Lyme Literate Medical Doctor” (LLMD) who is a member of the International Lyme and Associated Diseases Society (ILADS). These trained healthcare professionals generally take a detailed clinical history, perform a thorough physical exam, and do appropriate laboratory testing.

Brain imaging studies using SPECT can also help. Brain scans of people with infections like Lyme disease tend to show low overall blood flow and have a toxic appearance. When a brain looks toxic, it prompts a psychiatrist or other medical professional to dive deeper into what the root cause may be. It increases the chances of Lyme disease being investigated.

Hope for Lyme Disease

Just as singer Kristofferson saw an improvement in his symptoms when properly diagnosed and treated for Lyme disease, there is hope for other sufferers. With an accurate diagnosis and a personalized treatment plan, people can experience a reduction in symptoms and a greater quality of life.

At Amen Clinics, we have seen hundreds of patients with resistant complex psychiatric symptoms or cognitive problems who tested positive for Lyme disease and got significantly better when it was treated. Dr. Mark Filidei, who diagnosed Kris Kristofferson with Lyme disease, is the director of integrative medicine at Amen Clinics, where we commonly use specialty labs to help diagnose Lyme disease.

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For more: https://madisonarealymesupportgroup.com/2017/01/04/aluminum-alzheimers-ld/ Within this link you can watch a brief video of Kris Kristofferson, initially diagnosed with Alzheimers but was found to be infected with Lyme disease.

https://madisonarealymesupportgroup.com/2019/08/11/the-unfortunate-connections-between-lyme-disease-mental-illness/

https://madisonarealymesupportgroup.com/2019/05/30/why-lyme-disease-is-causing-a-mental-health-crisis/

https://madisonarealymesupportgroup.com/2019/05/27/uk-woman-isolated-pumped-full-of-anti-psychotics-told-its-all-in-her-head-until-finally-diagnosed-with-lyme/

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2017/07/26/can-lyme-steal-your-mind/