Archive for the ‘Lyme’ Category

Seronegative for Bb Yet Doxy Successfully Treated PCMZL

https://www.ncbi.nlm.nih.gov/pubmed/32323885

2020 Apr 23. doi: 10.1111/pde.14165. [Epub ahead of print]

Primary cutaneous marginal zone lymphoma treated with doxycycline in a pediatric patient.

Jothishankar B1, Di Raimondo C2, Mueller L3, Zain J2, Parekh V2, Abdulla F3.

Abstract

We present the third reported case of a primary cutaneous marginal zone lymphoma (PCMZL) treated with doxycycline in a pediatric patient with negative serology for Borrelia burgdorferi. A 14-year-old boy presented with multiple asymptomatic erythematous papules and nodules on his extremities and trunk which biopsy confirmed to be PCMZL. He was started on doxycycline and experienced a near-complete response. Given the favorable side effect profile of doxycycline and the indolent nature of PCMZL, we believe doxycycline is a possible therapy for PCMZL pediatric patients who have widely disseminated cutaneous disease.

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**Comment**

Anyone in the Lyme world understands that a negative serology result for Bb means absolutely nothing.  The fact this young man had “near-complete response” utilizing doxy as the sole treatment can pretty much bet he had Lyme/MSIDS.

For a good read (with pictures) on PCMZL:  https://www.dermnetnz.org/topics/cutaneous-marginal-zone-lymphoma

Excerpt:

It remains unclear whether cutaneous marginal zone lymphoma is the result of a de novo neoplastic process (the beginnings of a tumour) or a reaction to exogenous and/or endogenous agents [3]. A small number of cases have been associated with Borrelia burgdorferi (the cause of Lyme disease), and hepatitis C infection [1–4].

 

 

Category:

Lyme, research, Testing, Treatment

More CDC Lip-Service On Lyme Testing

What is the status of direct diagnostic tests for Lyme disease?

MAY 5, 2020 — 

A fellow supporter of this petition sent a letter to Dr. Ben Beard regarding the status of direct diagnostic tests for Lyme disease after reading the previous update: (Thank you Troy Plum!)

Previous update: TBDWG April 27, 2020 – Written Public Comment

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/26454826

Response from the Centers for Disease Control:

Dear Troy,

Thank you for your letter. Early and accurate diagnosis and treatment of Lyme and other tickborne diseases has been and will remain a top priority in CDC’s Division of Vector-Borne Diseases.

CDC partnered with the Minnesota Department of Health, Mayo Clinic, and Vanderbilt University Medical Center to obtain clinical specimens from patients with suspected tickborne illness, such as Lyme disease, anaplasmosis, or ehrlichiosis. CDC is in the process of evaluating 30,000 samples from tick bite patients with acute illness following a tick bite. Using a method called metagenomics, researchers are attempting to identify specific tickborne bacteria that caused these patients’ illnesses. An update on this project has recently been published (Kingry et al, Surveillance for and discovery of Borrelia species in US patients suspected of tickborne illness. Clin Infect Dis. 2018 Jun 1;66(12):1864-1871. doi: 10.1093/cid/cix1107). The ongoing project has identified several novel tickborne pathogens not previously seen in people. The project has also detected the new Lyme disease agent, Borrelia mayonii, originally discovered in 2013. The metagenomics method is one of several new methods being used to increase our knowledge of the pathogens that are causing tickborne illness, upon which new, direct diagnostic tests can be developed for Lyme and other tickborne diseases.

We know that early and accurate diagnosis and treatment is essential for assuring the best treatment outcomes and remain committed to identifying and disseminating the best diagnosis and treatment options for tickborne diseases, in collaboration with other federal agencies. CDC does not conduct studies on treatment options for tickborne disease patients, but relies on our sister agency, the National Institutes of Health, for this work.

CDC is very concerned for patients who suffer from tick-associated illness, and we remain committed to reducing the impact of Lyme and other tickborne diseases through Public Health action (https://www.cdc.gov/lyme/why-is-cdc-concerned-about-lyme-disease.html

Sincerely,

Centers for Disease Control and Prevention

Division of Vector-Borne Diseases
3156 Rampart Road
Fort Collins, CO

Carl Tuttle’s response to the CDC…….. 

Dr. Beard,

The CDC responded to my question regarding direct detection tests for Lyme disease referencing the following publication:

(Kingry et al, Surveillance for and discovery of Borrelia species in US patients suspected of tickborne illness. Clin Infect Dis. 2018 Jun 1;66(12):1864-1871. doi: 10.1093/cid/cix1107)

https://www.ncbi.nlm.nih.gov/pubmed/29272385

Excerpt:

“…using a Borrelia genus-level TaqMan polymerase chain reaction (PCR). Borrelia species and sequence types (STs) were characterized by multilocus sequence typing (MLST) utilizing next-generation sequencing.”

I shared this CDC response with knowledgeable individuals familiar with direct detection methods……

Here are just a few comments:

-None of the technologies described in this article are better than the conventional nested PCR and Sanger sequencing which of course they are trying very hard to avoid; perpetuating the status quo of a dysfunctional system. 

-They just drew another pie in the sky. The complexity and cost of the test will discourage any potential users. We need a direct test which can be implemented by hospital labs in the Lyme endemic areas.

–MLST and next-generation sequencing are useless for diagnosing individual patients, at least with the current state of technology and probably forever. They may have some value for monitoring ticks, epidemiology etc. but NOT for diagnostic testing.

_____________________

It would appear that the CDC response to the question; What is the status of Direct Diagnostic Tests for Lyme Disease is little more than lip service to project an image that our public health officials have everything under control.

If the CDC is “moving progressively in the direction of direct diagnostic testing” then give us the list of studies currently funded and the name of the institutions/researchers actively involved in bringing an accurate direct detection test to market within an accelerated time-frame to address America’s coexisting pandemic of Lyme disease which has spiraled out of control over the past three decades.

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

Category:

Activism, Lyme, Testing

Bizarre Happenings At the TBD Working Group

https://www.lymedisease.org/bizarre-tbd-working-group/

TOUCHED BY LYME: Bizarre happenings at the TBD Working Group

David Walker, MD.

April 27, 2020

By Dorothy Kupcha Leland

It was a crazy moment.

“Now we’re going to vote on whether we vote to re-vote on the original question.”

(That’s the gist of what Co-Chairman David Walker told the Tick-Borne Diseases Working Group this week, though not an exact quote.)

I’m sure I wasn’t the only person listening in to scratch their head and say “Whhhhaaaat?”

Let me back up and give a little context.

The TBDWG is a federal panel under the auspices of the US Department of Health and Human Services. Over the past year, it has held meetings, received and voted on recommendations from its various subcommittees, and started the process of compiling a report to Congress that’s due in November 2020.

There were still issues to sort through at the April 27 meeting, which the public could watch online.

About that federal inventory

One question had to do with recommendations from the Federal Inventory Subcommittee.

The TBDWG had previously asked all pertinent federal agencies to provide an inventory of all of their programs that relate to tick-borne diseases. The goal was to figure out what’s already happening and what still needs to happen. (Seems like a good idea to me.)

Based on this research, this subcommittee offered several recommendations that sailed through without a problem. Then things hit a snag with the following proposal:

Recommend that IF the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme disease.

(Note: the CDC website currently only offers information about early Lyme—offering nothing for people with persistent Lyme, still sick and suffering long after the acute phase has passed.

And after years of actively endorsing the IDSA’s Lyme treatment guidelines—which do not recognize persistent Lyme—the CDC does not currently list any Lyme guidelines on its website. Furthermore, as the Lyme community well knows, the question of persistence in Lyme is a highly contentious issue.)

Here’s what happened at the meeting, as near as I could tell.

The recommendation was moved and seconded. Then, for reasons not made clear, five panel members abstained from voting. At one point, the vote was announced as 5 abstaining, 5 yeses and 3 no votes. (Though shortly later, some people disputed those numbers. Nobody clarified the official vote for the folks tuning in from home.)

It appeared the abstainers felt that they had defeated the issue, because “yes” votes didn’t comprise a majority of panel members. But here’s the rub: abstentions don’t count one way or the other. So, the recommendation passed, 5-3.

Pandemonium

When that reality sank in, pandemonium broke out. One panel member said he wanted to change his abstaining vote to “no.” Not allowed.

Things got very bizarre very fast. Some people wanted to vote on the original question again. Some didn’t. Some people wanted to re-open discussion, others didn’t. “Robert’s Rules of Order” (which are supposed to guide meetings like this) were mentioned a few times, but nobody seemed to care much. Several new motions were proposed and seconded.

Co-chairman Walker kept saying things like “We’re voting on whether we should vote on whether we should vote…” and I could imagine a collective “HUH?” reverberating throughout the audience.

There was about 15 minutes of this nonsense. The kindest face I can put on it is to conclude that these people are so wigged out by the coronavirus pandemic that they’ve pretty much all lost their ability to be lucid and well-behaved.

With one notable exception. The Lyme Disease Association’s Pat Smith, the only patient advocate on the panel, kept steady, measured tones. And in the end, she prevailed.

It was, after all, her recommendation to have the CDC acknowledge persistent Lyme disease. The Working Group did not ultimately re-open discussion or voting on the original motion. So, for the moment anyway, the following recommendation still stands:

Recommend that IF the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme disease.

Supposedly, this means the TBDWG will include this point in its upcoming report to Congress. (But there’s another public meeting in July. Any bets on whether this proposal will actually make it into the final document?)

Pat Smith did another solid favor for the Lyme community during the meeting as well. At one point, she asked if and when the federal inventories of Lyme-related programs could be released to the public. After what seemed like hemming and hawing from various members, the panel asked the Designated Federal Officer if such a thing would be allowed.

Her reply: “I see no reason why not.”

Me neither. In my view, the more information like this we can make public, the better.

May 1, 2020, update: After musing for a few days, I have revised my take on this. It was much more than poor behavior. It was devious behavior.

The five abstainers sure gave the impression they were trying to game the system—to gain a “no” vote without out having to own up to it. When that ploy didn’t work, there was a mad scramble to go after their initial objective—which was to flush the proposal regarding persistent Lyme disease. (Lucky for us, that didn’t happen.)

That’s what this whole kabuki dance has been about since the inception of this 2019-2020 version of the Working Group. There’s been a concerted effort to minimize Lyme disease as much as possible—and heaven forbid, don’t mention the dreaded words “chronic” or “persistent.”

Interesting (and appalling) that Lyme disease—which the CDC acknowledges is responsible for 80% of tick-borne disease cases is the US—will get about 12% of the TBDWG’s upcoming report. (One chapter out of eight.)

Interesting (and appalling) that Dr. Eugene Shapiro, who hasn’t attended recent Working Group meetings, managed to show up for this one. So he could vote against the measure having to do with “persistent Lyme.” (More than 37,000 members of the Lyme community signed a petition to keep him off this panel. READ MORE.)

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and 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.

___________________

**Comment**

Bizzarre indeed, but not unexpected.

This right here is a perfect example of the convoluted measures “authorities” have taken to suppress that fact many patients struggle with remaining symptoms after treatment.  They refuse to admit Lyme (along with numerous other pathogens) can persist in the human body – causing damage. They firmly want us to believe this is an impossibility.

Rather than undertake good, unbiased scientific studies truly looking for answers, (preferably autopsies) authorities would rather just pronounce “it doesn’t exist,”and “it can not happen.” For more on this: https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/

This should be a warning shot over the bow because these tactics are currently being used with COVID-19 only in the opposite way. Authorities are doing all within their power to skew the numbers high to cause fear and panic over a supposed virus that a multitude of epidemiologists and doctors are stating isn’t any more deadly than the seasonal flu.

Up until now we’ve been told there is NO TREATMENT for viruses – only supportive measures.  Now, all of a sudden, the FDA is fast-tracking expensive anti-viral treatments that are immunosuppressive – the last thing COVID-19 patients need:  https://www.medpagetoday.com/infectiousdisease/covid19/86280?

According to Dr. Kohnlein, antivirals cause the same symptoms they profess to fight.  These things are listed on the package insert: anemia, bone marrow damage, oversensitive skin, breathing difficulties, defective kidney function and liver damage. Scarier yet, as a rule antivirals are nucleoside analogues or DNA terminators.  This means they block DNA to impede virus replication.  Source: “Virus Mania”

Then, when patients die due to the harsh immunosuppressive treatments they provide, they will ultimately blame COVID-19.  This, BTW, has been done repeatedly throughout history but is covered up.

As for betting on whether the TBDWG proposal actually makes it into the final document, I won’t waste my time.  It ain’t gonna happen.

 

 

 

 

 

Category:

Activism, Lyme

Tick-Borne Encephalitis Can Lead To Chronic Illness

https://danielcameronmd.com/tick-borne-encephalitis-can-lead-to-chronic-illness/

TICK-BORNE ENCEPHALITIS CAN LEAD TO CHRONIC ILLNESS

Tick-borne encephalitis (TBE) is a virus transmitted by ticks, which affects the central nervous system and is typically found in Europe and Asia. TBE is best-known to cause meningitis, meningoencephalitis, and meningoencephalomyelitis. There is no treatment for TBE, but the disease is preventable through vaccinations.

By

In an effort to better understand the role of the immune responses in the clinical course and post-treatment outcome of tick-borne encephalitis, Bogovič  and colleagues “assessed 24 cytokines and chemokines associated with innate and adaptive (T and B cell) immune responses.”

The study entitled Inflammatory Immune Responses in Patients with Tick-Borne Encephalitis: Dynamics and Association with the Outcome of the Disease compared the levels of inflammatory mediators during acute illness and later at follow-up time points

“to evaluate whether immune responses at each time point were associated with the outcome of the disease.”¹

1 in 3 patients with chronic symptoms

The authors found that “at least 30% of patients develop a post-encephalitic syndrome (PES), and approximately 5% are affected by permanent pareses.”

These patients report having

“persistent symptoms such as fatigue, arthralgias and myalgias, headache, dizziness, sleep disorders, emotional lability, memory and concentration disorders, etc., termed PES.”

Post-encephalitic syndrome may be due to “inappropriate activation of host immune responses following [tick-borne encephalitis virus] infection,” the authors suggest.

Furthermore, this “immune response may take months to years to return to homeostasis.”

A new study finds 1 in 3 patients with tick-borne encephalitis develops chronic symptoms. CLICK TO TWEET

“These findings provide new insights into the immunopathogenesis of TBE [tick-borne encephalitis] and implicate inflammatory immune responses with post-encephalitic syndrome years after the initial infection,” the authors conclude.

Tick-borne encephalitis and Lyme disease

  • A black-legged (Ixodes spp) tick can transmit infectious pathogens causing both TBE and Lyme disease.
  • Although there is no antiviral treatment for TBE, antibiotics can be used to treat Lyme disease and many of the co-infections.
  • There is currently a vaccine for tick-borne encephalitis. But the vaccine to prevent Lyme disease and co-infections was voluntarily taken off the market in 2002.

Individuals with tick-borne encephalitis can also be infected with Borrelia burgdorferi. In one study, “62 (9.1%) [patients] had proven co-infection with borreliae and 240 (35.1%) had possible co-infection,” writes Velušcek.² Meanwhile, proven borrelial co-infections have been reported even higher (13.5% and 16.7%) in other studies, writes. Velušcek.

References:
  1. Bogovič P, Lusa L, Korva M, Lotrič-Furlan S, Resman-Rus K, Pavletič M, Avšič-Županc T, Strle K, Strle F. Inflammatory Immune Responses in Patients with Tick-Borne Encephalitis: Dynamics and Association with the Outcome of the Disease. Microorganisms. 2019 Oct 31;7(11).
  2. Velušček M, Blagus R, Cerar Kišek T, Ružić-Sabljić E, Avšič-Županc T, F Bajrović F, Stupica D. Antibiotic Use and Long-Term Outcome in Patients with Tick-Borne Encephalitis and Co-Infection with Borrelia Burgdorferi Sensu Lato in Central Europe. A Retrospective Cohort Study. J Clin Med. 2019 Oct 20;8(10).

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**Comment**

I find it interesting that regarding tick-borne encephalitis virus, there is no pharmaceutical treatment, yet people are tripping all over themselves for a treatment for COVID-19 which also is supposedly a virus.  A virus is a virus is a virus.  Why is COVID-19 any different?  (Perhaps it’s a big money maker?)

Of course, Lyme literate doctors utilize many natural options for viruses with success in bolstering the immune system, unlike the highly sought after pharmaceutical options represented for COVID-19, which incidentally make huge profits:  https://madisonarealymesupportgroup.com/2020/04/16/viruses-immunity-dr-waters-fix-your-soil-and-the-seeds-cant-grow/

Things like high dose vitamin C, zinc, monolaurin, vitamin D, fish oil, and ozone, have been utilized successfully not only for tick-borne viral infections but for COVID-19 as well:  https://madisonarealymesupportgroup.com/2020/04/11/85-covid-patients-zero-hospitalizations-no-deaths/

This article points out the obvious ‘elephant in the room’ that those with metabolic disease struggle with COVID-19 more severely:  https://madisonarealymesupportgroup.com/2020/04/26/covid-19-and-the-elephant-in-the-room/  The obvious answer here is dietary and lifestyle choices.  This issue would be true for anyone struggling with chronic illness. Anything that drives inflammation should be dealt with first and fore-most, yet authorities would rather put a band-aid on it and reap massive profits by insisting on a prescription drug.

Category:

Lyme, research, Ticks, Viruses

Preventing Lyme – Dr. Chesney

https://www.betterhealthguy.com/episode118  Go here for video or audio

Episode #118: Preventing Lyme with Dr. Alexis Chesney, MS, ND, LAc

April 28 2020

About My Guest

My guest for this episode is Dr. Alexis Chesney.  Alexis Chesney, MS, ND, LAc is a naturopathic physician and acupuncturist specializing in Lyme and other tick-borne diseases.  Originally from New York, Dr. Chesney received a BA from Holy Cross College in Worcester, Massachusetts. She earned a Masters in Science in acupuncture from the University of Bridgeport Acupuncture Institute and a doctorate in naturopathic medicine from the University of Bridgeport College of Naturopathic Medicine in Connecticut.  She is one of the first naturopathic students to complete a hospital-based medical rotation.  With five of her colleagues from across the nation, she founded the Naturopathic Medical Student Association, which is a recipient of the AANP President’s Award.  Naturopathic residency brought her to Vermont, where she has continued to work with a team of integrative practitioners at Sojourns Community Health Clinic in Westminster. She also has a private practice in Northampton, Massachusetts.  She has dedicated her practices to the treatment of Lyme and tick-borne diseases.  She is a member of the American Association of Naturopathic Physicians (AANP), Vermont Association of Naturopathic Physicians (VANP), the International Lyme and Associated Diseases Society (ILADS) and a founding full member of International Society for Environmentally Acquired Illness (ISEAI).  Dr. Chesney serves on the Board of Directors and as the Naturopathic Medicine Committee Chair for ILADS.  She has been featured as an expert on tick-borne illness at an ILADS conference, at other professional and patient-focused conferences, on local talk radio, and in various news publications.

Key Takeaways

  • Why does the incidence of Lyme disease continue to rise?
  • Are co-infections the rule or the exception?
  • What is the difference between hard and soft ticks?
  • What times of year have the highest risk for tick exposures?
  • How common is a bulls-eye rash?
  • What is the role of Tick-Borne Relapsing Fever in Lyme-like illnesses?
  • What is alpha-gal?
  • How can tick populations be reduced?
  • What should be considered when spending time in nature to reduce the possibility of a tick bite?
  • What treatment options might be considered for prophylaxis?
  • When should one contact a doctor to discuss acute treatment strategies?
  • What testing options may be helpful early on?

Connect With My Guest

http://DrAlexisChesney.com

Disclaimer

The content of this show is for informational purposes only and is not intended to diagnose, treat, or cure any illness or medical condition. Nothing in today’s discussion is meant to serve as medical advice or as information to facilitate self-treatment. As always, please discuss any potential health-related decisions with your own personal medical authority.

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**Comment**

Many continue to wrongly attribute tick proliferation to “climate change.” Independent tick researcher John Scott has proven climate has nothing to do with it, but rather migrating birds and photo-period (hours of sunlight required for molting) are to blame:  https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

Here, even Dr. Ostfelt admits that the climate change theory doesn’t explain tick movement to Southern coastal regions, yet this isn’t enough to quell the climate theory narrative:  https://madisonarealymesupportgroup.com/2020/04/30/lyme-disease-advice-protecting-yourself-against-ticks/

Unfortunately, while Dr. Chesney is qualified to talk about treatments and health related topics, a tick expert should be the one questioned about ticks.  She can give her opinion and state as much, but so often people give advice and information that may or may not be current. This information is then taken as gospel by patients and doctors – furthering half-truths and old dogma.  This is rife within the topics of tick-borne illness.

A great example of this is tick attachment time required for infection. Within this article Dr. Mather, a tick expert, propagates the narrative that a tick has to be attached for 24 hours to cause human infection when doctors clinically treating people have stated over and over this is not the case in reality: https://madisonarealymesupportgroup.com/2020/04/28/a-runners-guide-to-tick-prevention-removal-much-of-which-is-wrong/

These issues are really important because mainstream doctors continue to believe these false statements and act upon them. We don’t need more climate data. We need accurate testing, effective treatments, and prevention measures that work.  We also need doctors to become educated to understand very little about Lyme/MSIDS fits into a neat box.

Category:

Lyme, Ticks, Treatment