Archive for the ‘Lyme’ Category

Why Does the CDC Refuse to Recognize the Disabling Stage of Lyme?

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30673922?

Question for Dr. Dennis M. Dixon: Why does the CDC refuse to recognize the disabling stage of Lyme

Carl Tuttle

Hudson, NH, United States

Jun 19, 2022 — 

Latest email to the Federal Tick-Borne Disease Working Group. Why not ask Dr. Dennis Dixon to answer the question: “Why does the CDC refuse to recognize the disabling stage of Lyme disease?” 

Dennis.Dixon1@nih.hhs.gov

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: “Dennis.Dixon1@nih.hhs.gov” <Dennis.Dixon1@nih.hhs.gov>
Cc: All Members of the TBDWG
Date: 06/18/2022 9:03 AM
Subject: Question for Dr. Dennis M. Dixon: Why does the CDC refuse to recognize the disabling stage of Lyme disease?

June 18, 2022

Dennis M. Dixon, Ph.D.
Chief, Bacteriology and Mycology Branch
National Institute of Allergy and Infectious Diseases (NIAID)
National Institutes of Health (NIH)
U.S. Department of Health and Human Services

Dear Dr. Dixon,

In 2020 I was appointed to a Lyme Disease Study Commission here in New Hampshire with a focus on serology. During that 12mo study, we heard testimony from numerous Lyme patients including Ashley Lynch who testified from her wheelchair. [1]

–Fifth-grade teacher and Lyme patient Kelly Downing from Nashua NH was paralyzed from the neck down and interviewed by Katie Couric. [2]

-Dr. Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for many years. [3]

-Julia Bruzzese who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York was “the most precious moment of my life.” [4]

–Nicole Bell lost her husband to undiagnosed Lyme disease as reported to Today.com on June 1st. [5]

This is just a short list of the horror patients experience all across America!

Question: Why does the CDC refuse to recognize the disabling stage of Lyme disease? [6]

Since you seem to believe that the Lyme science is settled, referring to the Klempner antibiotic trials, perhaps at the next meeting you could explain to the Working Group how Lyme disease disables its victim?

A response to this inquiry is requested.

Respectfully submitted,

Carl Tuttle
Hudson, NH

PS. The NH Lyme Study Commission concluded that serology to detect Lyme disease is unreliable in all stages of disease. 
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/reports/RSA%20141-C%20Lyme%20Commission%20Study.pdf

References:

1. Ashley Lynch who testified from her wheelchair
https://rumble.com/vmyzi9-nh-commission-to-study-testing-for-lyme-and-other-tick-borne-diseases-08.23.html

2. Nashua Mom in the ‘Lyme Light’ on Katie Couric Show
http://patch.com/new-hampshire/nashua/nashua-mom-talks-chronic-lyme-on-katie-couric-show

3. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
https://www.dukechronicle.com/article/2015/05/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy

4. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’ 
http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/

5. It started with a tick bite. How I lost my husband to undiagnosed Lyme disease
https://www.yahoo.com/now/started-tick-bite-lost-husband-140124817.html

6. 10 tips for Lyme disability insurance claims
https://www.lymedisease.org/lyme-disability-insurance-claims

__________________

For more on the corrupt CDC:

Category:

Activism, Lyme, Uncategorized

Efficacy of Short-Term High Dose Pulsed Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) & Associated Coinfections: A Report of 3 Cases & Literature Review

https://www.preprints.org/manuscript/202204.0296/v1?bbeml

Efficacy of Short-Term High Dose Pulsed Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) and Associated Co-infections: A Report of Three Cases and Literature Review

Richard I. Horowitz*

and Phyllis R. Freeman

Abstract

Lyme disease and associated co-infections are increasing worldwide and approximately 20% of individuals develop chronic Lyme disease (CLD)/Post-Treatment Lyme Disease Syndrome (PTLDS) despite early antibiotics.
A 7–8-week protocol of double dose dapsone combination therapy (DDDCT) for CLD/PTLDS results in symptom remission in approximately 50% of patients for one year or longer, with published culture studies indicating higher doses of dapsone demonstrate efficacy against resistant biofilm forms of Borrelia burgdorferi. The purpose of this study was therefore to evaluate higher doses of dapsone in the treatment of resistant CLD/PTLDS and associated co-infections. Twenty-five patients with a history of Lyme and associated co-infections, most of whom had ongoing symptoms despite several courses of DDDCT, took one or more courses of high dose pulsed dapsone combination therapy (200 mg dapsone X 3-4 days and/or 200 mg BID x 4 days), depending on persistent symptoms.
The majority of patients noticed sustained improvement in 8 major Lyme symptoms, including:
  • fatigue
  • pain
  • headaches
  • neuropathy
  • insomnia
  • cognition
  • sweating

where dapsone dosage, not just treatment length, positively affected outcomes. High dose pulsed dapsone combination therapy may represent a novel therapeutic approach for the treatment of resistant CLD/PTLDS, and should be confirmed in randomized, controlled clinical trials.

___________________

For more:

Please remember that the often touted 20% of individuals who go on to suffer symptoms despite early treatment only include those who are diagnosed and treated early and omit a much larger subset of patients like myself, my husband, and nearly every patient I work with who are diagnosed and treated later.  For more on this, please see:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

Important excerpt:

10-20% of Lyme disease patients who are promptly diagnosed and treated with an antibiotic within the first few weeks of infection, still end up with chronic disease. This is PTLDS.

30-40% of Lyme disease patients who have been infected for weeks to months before getting diagnosed, and THEN treated with an antibiotic, still end up with a chronic disease. This subgroup has no specific label but it has been referred to as “chronic Lyme disease,” or CLD.

60% of Lyme patients end up with chronic symptoms

And this, of course, doesn’t even take coinfections into consideration.

Category:

Lyme, research, Treatment

How to Tell If a Tick Head is Still in Your Skin

https://www.self.com/story/tick-head-in-skin

Here’s How to Tell If a Tick Head Is Still in Your Skin, According to Doctors

And how to safely remove all of it ASAP.

By Kathryn Watson

Medically reviewed by Samantha G. Stoler, MD

digital collage showing closeup of legs and a line drawing of a tick
If a tick head is still in your skin, you’ll want to remove it carefully.Photo by Karyme França from Pexels / Tick drawing by Hein Nouwens via Getty Images / Design by Amanda K Bailey

You’re out hiking, breathing in the fresh air, taking in the sounds of nature—ticks are the furthest thing from your mind. That is until you see a brown tick butt sticking out from your skin. Maybe you immediately rip it off, only to wonder, How can I tell if a tick head is still in my skin?

If this is you, don’t panic. We‘ve got answers ahead. But first, let’s talk about ticks. We’re seeing an uptick in these tiny, insect-like parasites that feed off people and warm-blooded animals due to the growing populations of two of their favorite hosts: deer and mice. That may be good for ticks—they definitely have their place in a healthy, natural ecosystem—but that healthy place is not on your body. After all, ticks can transmit pathogens when they latch onto you. Over the past ten years, according to the National Institute of Allergy and Infectious Diseases, there has been a surge in Lyme disease and other tick-borne illnesses, many of which can cause severe complications if they aren’t diagnosed and treated.  (See link for article)

___________________

SUMMARY:

  • An attached tick typically stays put for anywhere from 3 days to two weeks. The longer it is attached, the greater your risk for infection, so getting it off safely and promptly is important.
  • While the article recommends the CDC’s method of using tweezers for tick removal, I recommend a special tick removal device.  Go here for a review of products. Some can even be put on your key-chain which is handy in a pinch.
  • It’s important to NOT squeeze the tick or crush it as the fluids could transmit infection.
  • Some states offer free tick testing.  You can save the tick and have it tested for pathogens.  Wisconsin does not have such a service, which is really unfortunate, but tick testing is not without error.
  • Dermatologists recommend using a magnifying glass to make sure you haven’t left any body parts.  If the skin is firm, red, irritated, and has a lump, the tick may be embedded deeper.  You may need a dermagologist to surgically remove it with a punch biopsy tool.
  • The dermatologist states that “most tick bite end up being harmless.”  Where he derives this is beyond me.  Take each and every tick bite as seriously as a heart attack.  This crud can derail your life.
  • He also states you don’t need to call your doctor right away.  I COMPLETELY DISAGREE.  Call!  Immediately!  Get on prophylactic antibiotics/antimicrobials asap.  The risk of a life-debilitating illness just isn’t worth it.  Do NOT take the “wait and see approach.”
  • I highly recommend the article: Help! I Got Bit By a Tick!  What Do I do?
  • For prevention:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/
  • Excellent Resource on steps to take if you are bitten by a tick:  https://madisonarealymesupportgroup.com/2020/04/21/help-i-got-bit-by-a-tick-what-do-i-do/

Category:

Activism, Lyme, Testing, Ticks, Treatment

British Columbia CDC Updates Info on Lyme Disease

https://www.castanet.net/news/BC/369932/BCCDC-releases-map-of-risk-areas-where-people-could-contract-Lyme-disease

BCCDC releases map of risk areas where people could contract Lyme disease

Lyme disease areas listed
Rob Gibson – May 25, 2022

The British Columbia Centre for Disease Control has updated its information on Lyme disease in the province.

The agency has published a map of the areas considered risk zones for Lyme disease.

“It’s certainly an update, and contradicts much of what doctors have been telling patients throughout the province for years,” said Jim Wilson, president and founder of the Canadian Lyme Disease Foundation.

Wilson says the BCCDC was behind the times and he’s glad to see they have updated their information.

“Saying these areas are not at risk for Lyme disease (in the past), is just not the case and hasn’t been the case for decades.”

(See link for article)

__________________

**Comment**

Wilson, a patient himself, states the main reason for the long-overdue update was due to pressure by his organization.

And this, my friends, is the only way we make progress.  By doing it ourselves.

Wilson also warns that an important underlying issue that isn’t being discussed is the fact ticks are possibly everywhere due to migrating birds transporting them globally.  He states Revelstoke, Golden, and Banff which aren’t highlighted by the BCCDC map should be.

Please check out prevention and removal methods on his website, as well as many other resources.

For more:

Category:

Activism, Lyme, Prevention, Ticks

Optic Neuritis Associated With Lyme Disease

https://danielcameronmd.com/optic-neuritis-associated-with-lyme-disease/

Optic neuritis associated with Lyme disease

optic-neuritis-lyme-disease

In their article, “Characteristics of Lyme optic neuritis: a case report of Lyme associated bilateral optic neuritis and systematic review of the literature,” Lu et al. present a rare case of isolated bilateral optic neuritis in a Lyme disease patient. [1] (Optic neuritis is an inflammation of the eye’s optic nerve.)

By

The case features a 48-year-old female with multiple sclerosis (MS) who presented to her primary care physician with a fever and sore throat.

Three weeks later, she returned complaining of photophobia, eye pressure sensation, blurry vision, pain with eye movements and central scotoma on the morning prior to her visit. (A scotoma is a blurry or blind spot in your visual field while the surrounding areas appear normal.)

An “MRI along with fundus exam confirmed the diagnosis of bilateral optic neuritis,” the authors write.

Two months prior to her visit, the woman had removed a tick from her leg but did not report any rashes.

Testing for Lyme disease was positive by Western blot.

The woman was hospitalized and treated with intravenous methylprednisolone (1g/day for 3 days) due to the degree of swelling, along with ceftriaxone (2 g/day for 25 days) for Lyme disease.

The “patient returned for follow up 1 week post hospitalization, reported visual symptoms abated and she was back to her previous baseline,” the authors write.

“Clinicians working in the endemic areas should consider Lyme borreliosis in patients presents with bilateral optic nerve head swelling, and painless progressive visual loss.”

In reviewing the literature, Lu and colleagues found 11 patient cases of optic neuritis and Lyme disease.

“In this review, we collected cases that have demonstrated strong evidence of causal relationship of Lyme borreliosis and optic neuritis in attempt to characterize the nature and clinical presentations of optic neuritis involved in Lyme borreliosis…,” the authors write.

The most common symptoms related to optic neuritis included blurry vision (11 cases), headache (7 cases), scotoma (3 cases) and painful ocular movement (3 cases).

“Additionally, there were 4 reported neurological symptoms – paresthesia (3 cases) and ataxia (1 case); 3 reported arthralgia; and 3 reported nonspecifc symptoms – fatigue, weakness, and myalgia,” the authors write.

Only 2 of the 11 patients reported having an erythema migrans (Bull’s-eye) rash, while the majority did not recall having a tick bite.

Moderate vision loss was reported in 8 of the patients.

According to the authors, “The patients all responded well with combination of corticosteroid and antibiotic therapy, or antibiotic therapy alone.”

As the authors point out, typically optic neuritis presents with acute, painful, and unilateral visual loss. However, in these Lyme disease patients, it presented with “bilateral optic nerve head swellings, and painless, moderate (better than 20/200) and progressive visual loss.”

References:
  1. Lu, Y., Zand, R. Characteristics of Lyme optic neuritis: a case report of Lyme associated bilateral optic neuritis and systematic review of the literature. BMC Neurol 22, 113 (2022). https://doi.org/10.1186/s12883-022-02627-z

For more:

Category:

Eye Issues, Lyme, research