Archive for the ‘Lyme’ Category

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.

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

The Danger of “Waiting & Seeing” With Lyme Disease

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!

GI Issues With Lyme Disease

https://www.globallymealliance.org/blog/gastrointestinal-issues-with-lyme-disease

When patients consider taking long-term antibiotics for persistent Lyme disease, they need to weigh risks and benefits of treatment. Gastrointestinal risks can include the possibility of a C.diff infection, or candidaovergrowth, which is a yeast infection that occurs not just in typical places you imagine but also in the gut. A good Lyme Literate Medical Doctor (LLMD) will put a patient on probiotics and a specific diet to mediate these risks, or may decide to go the intravenous route to take pressure off the gut.

Medication is not the only way that the gut can be impacted by Lyme disease; the infection itself can cause gastrointestinal issues. In his book How Can I Get Better? An Action Plan for Treating Resistant Lyme & Chronic Disease, Richard I. Horowitz, MD notes that Lyme and co-infections can cause inflammation leading to issues such as abdominal pain, nausea, gas, bloating, constipation, diarrhea, or reflux disease, with occasional vomiting. He writes, “…a review of gastrointestinal and liver problems associated with tick-borne diseases found that in 5 percent to 23 percent of those with early Lyme borreliosis, patients presented with varied gastrointestinal symptoms, such as nausea, vomiting, abdominal pain, anorexia with loss of appetite, and hepatitis, and some even had symptoms of an enlarged spleen and liver.”[i] And that’s just in early Lyme—in later stages of the disease, spirochetes(Lyme bacteria) can burrow deeper into the gastrointestinal tract, causing more damage. Other tick-borne diseases can also cause their own gastrointestinal issues, often overlapping with Lyme symptoms when the patient is co-infected.

Because every case of tick-borne illness is different, some Lyme patients may not experience any gastrointestinal symptoms. When I was at my sickest with Lyme disease, babesiosis, ehrlichiosis, possible bartonella, and chronic active Epstein-Barr virus, I used to joke, “Well, at least my stomach feels okay.” Because I wasn’t experiencing abdominal pain or vomiting, I figured my stomach was the one part of my body that had gotten off easy.

In fact, many of the symptoms I experienced in other parts of my body, including joint and muscle pain, migraine headaches, fever, and fatigue, were directly related to weakness in my gut caused by disease. Unbeknownst to many people—myself included before I got sick—the gut is a major player in the immune system. Dr. Horowitz writes that the “GI tract houses 80 percent of our immune system and 70 percent of our lymphocytes, making it the first line of defense against infections.” He goes on to explain that “…the gut can hold as many as 100 trillion microbes, referred to as the microbiome.” The bacteria in each person’s unique microbiome “help to supply essential vitamins; fight dangerous pathogens; keep the immune system in balance and modulate autoimmune disease (like MS and rheumatoid arthritis); modulate hormones, appetite, weight, glucose metabolism, and diabetes; modulate cardiovascular risk, neurological and psychiatric diseases (like Parkinson’s and schizophrenia); affect epigenetics, modulate cancer risk and affect inflammatory reactions in the body, including allergies, asthma, Crohn’s disease, and colitis.”i

An imbalanced microbiome can lead to intestinal permeability, commonly called “leaky gut syndrome.” This can allow toxins pass into the gut, causing inflammation and changes in flora; it’s similar to what happens when the blood-brain barrier is compromised. A 2020 study done by researchers at Johns Hopkins University School of Medicine, Northeastern University, and University of California San Diego found that the gut microbiome of post treatment Lyme disease patients was distinctly different than the gut microbiome of healthy subjects.

Whether Lyme patients experience gastrointestinal symptoms or not, their microbiome is impacted by their infection(s), their medications, and their diet. A weakened microbiome means a weakened ability to heal. As Lyme patients, we can help strengthen our microbiome by taking probiotics to replace good bacteria that are killed by antibiotics (some patients also take an anti-fungal medication, which can have anti-spirochetal effects, too), and by sticking to “The Lyme Diet.” Gluten and sugar are particular menaces to the microbiome, and your doctor may also recommend other dietary changes or nutritional supplements to help you maintain gut health. As I’ve come to learn, it is central to overall health!

[i] Horowitz, Richard I., MD. How Can I Get Better? An Action Plan for Treating Resistant Lyme & Chronic Disease. New York: St. Martin’s Griffin, 2017 (327, 328-9).

A Quick Tour of the New IDSA Lyme Disease Guidelines

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/29231613?

A Quick Tour of the New (IDSA) Lyme Disease Guideline

JUN 20, 2021 — 

Please see the email below sent to Dr. Paul Auwaerter of the Infectious Diseases Society of America.

FYI…per the link below:

Pending approval by the court, the TORREY v. IDSA is now an anti-trust lawsuit against a single defendant: The Infectious Diseases Society of America.

https://www.lymedisease.org/idsa-lyme-lawsuit-update-pfeiffer/

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: “pauwaert@jhmi.edu” <pauwaert@jhmi.edu>, “alexa011@mc.duke.edu” <alexa011@mc.duke.edu>, “thomas.fekete@temple.edu” <thomas.fekete@temple.edu>, “editor2@webmd.net” <editor2@webmd.net>
Cc: All members of the NH Lyme Study Commission, “governorsununu@nh.gov” <governorsununu@nh.gov>
Date: 06/19/2021 12:28 PM
Subject: A Quick Tour of the New Lyme Disease Guideline

MEDSCAPE COMMENTARY
 
A Quick Tour of the New Lyme Disease Guideline
https://www.medscape.com/viewarticle/951589
Paul G. Auwaerter, MD

June 14, 2021

Excerpt:

“Of importance, the guideline goes out of its way to cite the lack of evidence for performing Lyme disease tests, specifically routine testing in cases where there’s no evidence or link to Lyme disease. Examples include someone who is asymptomatic after a tick bite, even when they have a neurologic condition such as amyotrophic lateral sclerosis, multiple sclerosis, Parkinson’s disease, dementia, or any kind of new-onset seizures or psychiatric illness. In children, behavioral and developmental disorders don’t warrant assessing a Lyme disease serology.

June 19, 2021

The IDSA Foundation
1300 Wilson Boulevard Suite 300
Arlington, VA 22209
Attn:  Paul Auwaerter, vice chair of the IDSA Foundation

Dear Dr. Auwaerter,

In reference to your recommendation not to test for Lyme disease in children with behavioral and developmental disorders are you aware of the following article?

Study detects tick-borne illness in teens hospitalized for depression
https://www.lymedisease.org/hospitalized-teens-lyme-depression/

Ten patients were diagnosed with DSM-5 Major Depressive Disorder, seven were additionally diagnosed with Generalized Anxiety Disorder, and three had made serious suicide attempts.

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.

____________________________________

Dr. Auwaerter… It sounds to me like your recommendation “not to test for Lyme” might not be sound advice after all which begs the question; how many other patients currently in the healthcare system being treated for neurologic conditions are actually dealing with untreated Lyme disease and/or co-infections?

A response to this inquiry is requested.
Respectfully submitted,

Carl Tuttle
Hudson, NH

Member of Governor Chris Sununu’s Lyme Disease Study Commission
http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490
Cc: All members of the NH Lyme Disease Study Commission

THOMAS FEKETE, M.D., FIDSA CHAIR of the IDSA Foundation

Barbara D. Alexander, MD, MHS, FIDSA, President IDSA

A Quick Tour of the New Lyme Disease Guideline
This transcript has been edited for clarity. Hello. This is Paul Auwaerter for Medscape Infectious Diseases, speaking from Johns Hopkins…