Researchers from the Johns Hopkins University School of Medicine are saying that chronic Lyme is real after releasing the results of a recent study published in Frontiers in Medicine in December.
In the study, sixty-one participants who met the proposed case definition for Post-treatment Lyme disease syndrome (PTLDS) were either self- or physician-referred to the Lyme Disease Clinical Research Center at Johns Hopkins.
Roughly half were women and half were men, ranging in age between 18 and 82. Also recruited were 26 healthy controls, also split nearly evenly between the sexes and about the same ages as the other group, with no clinical history of Lyme disease symptoms and no antibodies to Borrelia burgdorferi that would indicate past or current infection.
A comprehensive battery of clinical and laboratory tests were run on the participants and a detailed medical history and neurological assessment was completed.
What researchers found was compared to controls, participants with PTLDS reported significantly greater fatigue, pain, sleep disturbance, and depression and significantly lower quality of life.
John N. Aucott, associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center said, “Post-treatment Lyme disease syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection.
“People have been comparing apples to oranges by grouping all of those with chronic Lyme disease together,” he says. “Our study was designed to compare apples to apples.
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“By and large, all the test and exam results from both the PTLDS patients and the healthy controls were not statistically significantly different by group, including their blood tests and physical exams.” Aucott says. “We found no truly objective markers of PTLDS on any of these clinically available tests.”
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However, he says, there were significant differences in the results from the questionnaires. About 50 percent of the PTLDS patients reported severe fatigue, about 28 percent reported severe pain, about 23 percent reported severe cognitive complaints and about 31 percent reported severe sleep difficulty. None of the healthy controls reported any symptoms in the “severe” range. In total, the researchers found 19 symptoms that are not part of the standard PTLDS criteria to be significantly more severe among the study participants with PTLDS than among controls.
“Even though their exams and lab tests didn’t show much in the way of a common or clear biological marker or markers of PTLDS, it’s clear these patients don’t feel well,” says study co-author Kathleen Bechtold, associate professor of physical medicine and rehabilitation at Johns Hopkins. “These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day.”
Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.
Related:
The existence of PTLDS was never controversial. What is controversial is whether it is caused by a lingering Borrelia infection. Scientists say no, but putative “Lyme activists” and so-called “Lyme-literate doctors” (quacks, actually) say it does. The most reasonable explanation for PTLDS is that some neurological damage can persist for long periods and may even be permanent. The existence of this damage is not evidence of a chronic infection.
Really Mr. Thorson?
1) How long have you had Lyme?
2) Was it treated or, as in my case, found a year later (after finding an engorged tick in my ear & reporting it to the V.A.) & told “Geez, yes you’re positive for Lyme but no, we can’t treat ya here in AL”.
3) Have you been dealing w/it for 17+yrs?
4) What would you do, after losing everything & exhausting all avenues & money?
5) When I go, you may have my brain & find the damage/invasion/erosion & I hope you feel better about yourself.
In the meantime, look up the word ‘chronic’ & get educated. The damage is done, my life exists in a bed & others are dying. Call it whatever you want to, I do not care. I just want this to be fixed or to end & I’m tired of waiting on ppl to agree on ‘What to call’ this hell I live in.
Sincerely,
Just another statistic
I don’t need to have Lyme to identify Lyme quackery. That’s like saying you can’t criticize the evidence for UFO alien abduction if you haven’t been abducted. I live in California, where Lyme does not exist except in travellers to places like New England where they acquire their infections. And yet, here there are Lyme quacks who diagnose Lyme disease in people who have never been to places where they could get infected. They diagnose based on symptoms alone with no actual tests showing presence of the bacteria or antibodies against it. Why do they do it? Because it brings in lots of money for long courses of antibiotics which are completely ineffective because there’s no underlying infection to be treated. It’s a river of money for these quacks. Although it’s true that Lyme disease can cause dementia, by far the most common cause of dementia is Alzheimer’s Disease (about 70%) and the second most common cause (about 15%) is vascular dementia which may actually be the same disease. If these quacks were allowed by insurers to diagnose all dementia cases as Lyme based on symptoms alone, it would open the floodgates to long courses of ineffective treatment that would do nothing more than enrich the bank accounts of these despicable “Lyme-literate” doctors.
You are a idiot. I got Lyme w 7 co’s from the foothills in Sierra Nevada mnts outside of Mariposa. Age 9 had misdiagnosis of juv Myasthenia gravis my grandmother also acquired ALS approx same time same place. Went into total remission from JMG and was seen at UCSF they said to get it in first place that age astronomical remission 2yrss later they couldn’t explain also they consulted mayo clinic. After years of illness hysterectomy age 25 ms like symptoms age 35 tested positive Lyme n 7 co as did my daughters whom had issues along w teeth at birth. We now know that was example of infection in utero. Youngest seizures 18 months I could go on n on. I am extremely intellectually with medical issues. In had typical Lyme related issues including L bundle branch block age 25 etc after hysterectomy. Age 53 heart failure spinal issues atypical MS have been to the top specialist in country saved myself n oldest youngest has issue and I suffer last stage chronic post treatment Lyme. It is rampant in Cali you have no business commenting on this issue my Drs where presidents of ILADs and Dr David martz whom has the ALS form himself was my doctor so you shut up before you do damage to some one who may listen to your insane uneducated opinion
Mark Thompson, people are fed up with the IDSA pseudoscience and propaganda – too much harm has been done to patients. Short-term treatment doesn’t work in late Lyme/coinfections.
I thought my Lyme was gone. I had the rash, I was treated with 30 days of doxy, I still had symptoms after, was told I had ptlds. I then decided on a keto diet and regular exercise. After a couple months, I felt perfect. So much energy and vitality. Then I got a toothache, took some antibiotics and within 24 hrs, Lyme roared within me. It wasn’t gone I was just happily co-existing with it. So what you are saying isn’t proper and rather disparaging to those who are so privileged to experience this and learn on our own how to overcome. I as well was in the understanding that these were lingering symptoms from the first infection, as you stated, initial damage, but now know that’s not the case and will be struggling to heal myself once again and won’t be fooled by not having symptoms. I am 57 and a woman. What I am most upset with is the ignorance of this Lyme disease in the world of physicians.
What a sloppy mess this “study” is. I guess with the recent class action lawsuit against members of the IDSA who wrote the Lyme disease treatment guidelines, we can expect more of these types of “studies” and “reports” as they try to muddy the waters to make sure the long-suppressed truth isn’t discovered. They typically show up fast and furiously right before a major finding regarding the persistence of Borrelia burgdorferi occurs, in an attempt to front run the story. Aucott might want to give Embers a call and see what was causing “PTLDS” in rhesus macaques in her studies. Turned out to be living, breathing Borrelia that survived the IDSA recommended course of antibiotics, a surprise to pretty much no one who doesn’t have a conflict of interest.
Symptoms of Lyme Disease. Lyme Disease is an infection caused by the spirchete bacteria, Borrelia burgdorferi, which can cause a constellation of symptoms ranging from fatigue and joint pain to serious neurological problems. Lyme Disease can range from a sudden acute Lyme infection to a slow erosion of health from persistent Lyme Disease. A persistent Lyme infection or “Lyme presence” may result from prior exposure and may present as a general decline in health or persistent health problems of unknown cause, or may exhibit as a set of brand new symptoms, which can be mild or severe. A person with Lyme disease may be co-infected with other organisms and co-infections often require different antibiotic therapy compared to Lyme Disease. Acute Lyme Disease infection responds well to aggressive antibiotic, anti protozoal therapy. The two most common reasons people do not respond to Lyme Disease treatment are untreated co-infections and/or the presence of heavy metals in the body. The consensus opinion of the International Lyme and Associated Diseases Society and many other healthcare professionals is that an individualized treatment approach is necessary based on clinical judgment. Reduce the Lyme Disease and Microbial Burden on the Body Support the Immune System A logical way to approach Lyme Disease treatment is to reduce the microbial burden in the body- clear it out- and restore immune function, thus restoring healthy balance again. Lyme Disease is today’s “Modern masquerader” and can masquerade as arthritis, chronic fatigue syndrome, fibromyalgia, Bell’s palsy, Multiple Sclerosis, ALS, Alzheimer’s, neurological disorders or psychiatric disorders, especially in the later stages.
The problem with the ILADS criteria is that it would allow symptom-based diagnosis alone when no bacteria or antibodies are present. This would allow other much more common forms of dementia to be diagnosed as Lyme and treated with long courses of antibiotics. This is exactly what the “Lyme-literate” charlatans want — license to apply their expensive, ineffective treatments and make insurance pay for it. The notion of “co-infections” is how they explain treatment failure and keep the poor victim on the hook to be milked indefinitely. Only the CDC/IDSA criteria are based on science. The ILADS criteria are based on greed.
Study finds Lyme bacteria can survive antibiotic treatment months after infection
https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-survive-after-antibiotic-treatment-months-after-infection
Netherlands (Europe)
Lyme disease costs EUR 20 million annually
https://www.rivm.nl/en/Documents_and_publications/Common_and_Present/Newsmessages/2017/Lyme_disease_costs_EUR_20_million_annually
Each year, 25,000 people in the Netherlands contract Lyme disease, costing an annual EUR 19.3 million. Approximately 1,500 patients get a severe infection and this costs EUR 7.2 million, which represents 37% of the total costs. Moreover, approximately 1,000 patients each year have persistent symptoms after treatment. These persistent symptoms cost an annual EUR 5.2 million, 27% of the total costs. These two groups are often prescribed more expensive treatments, are sometimes hospitalised and are often unable to work. As a result, they cause the largest share of the total annual costs.
This is bullshit I went to my MD the same day I saw my email rash and was given three weeks of doxy I felt tired and nausea but not bad when I finished the antibiotic two weeks later my neck got sore my legs were weak and I had terrible body and nerve pain and never stopped sweating still on doxy nine weeks later the body pain has stopped neck is still sore and now having tingling in my face and still sweating I want to hear some answers to this why didn’t the medicine get rid of this bullshit
I was diagnosed a year and a half ago with Lyme disease after three months of flu-like symptoms and severe knee and foot pain. Finally, after several tests and an expensive MRI, I was diagnosed. I was put on doxycycline and had a severe reaction to that, so then they put me on a different medication. My pain still didn’t go away for good. I still had bouts of pain and fatigue that last weeks. I was seeking something to help regain my life to be able to do things for myself. Through my primary physician i learnt about a Lyme disease herbal formula from NATURAL HERBAL GARDENS and their success rate with the treatment, i immediately started on the Lyme disease herbal protocol, I am glad to report the herbal formula worked effectively and there was no side effects, I had a total decline in symptoms, the pains, chronic fatigue and other symptoms stopped, my Lyme disease is totally REVERSED, Here is a link to the website we ordered from ww w.naturalherbalgardens.c om This Herbal Protocol is Incredible!!