Archive for the ‘Lyme’ Category

Persistent Infection a Religious Belief? WG Co-Chair Says ‘Yes’

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

Persistent infection a Religious Belief? WG Co-Chair Says Yes

SEP 3, 2020 — 

The following letter was sent to Eugene Shapiro, member of the Tick-Borne Disease Working Group and defendant in the Lisa Torrey vs IDSA racketeering lawsuit with Cc: to the Group. I have asked the TBDWG to acknowledge this letter, to be included in the records and request a response from Shapiro and/or Dr. Walker, Chair of the Working Group. Perhaps you could prompt the TBDWG to demand a response from Shapiro and Walker who believe persistent infection is a “Religious Belief.”

Email: tickbornedisease@hhs.gov

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: eugene shapiro <eugene.shapiro@yale.edu>, “tickbornedisease@hhs.gov” <tickbornedisease@hhs.gov>
Cc: (98 Undisclosed recipients)
Date: 09/02/2020 11:28 AM
Subject: Contentious 9 Hour WG Meeting: Persistent infection a Religious Belief? WG Co-Chair Says Yes

Contentious 9 Hour WG Meeting: Persistent infection a Religious Belief? WG Co-Chair Says Yes
https://lymediseaseassociation.org/government/federal-government/govt-departments-a-policies/hhs-tbd-working-group/contentious-9-hour-wg-meeting-persistent-infection-a-religious-belief-wg-co-chair-says-yes/

July 14, 2020

“Dr. Walker said there is “emphasis on belief…almost religious belief that it’s a persistent infection” and at various times said they probably didn’t have Lyme to start with.”

Sept 2, 2020

Yale New Haven Children’s Hospital 
1 Park Street 
Ste West Pavilion – 2nd Floor
New Haven, CT 06504
Attn: Eugene Shapiro, MD

Dr. Shapiro,

Below is an excerpt from my recent letter to the editor published in the BMJ. Could you please explain your motivation for suppressing evidence of persistent infection after extensive antibiotic treatment and then claiming there is no evidence?

Please hit “reply all” as I have carbon copied the Tick-Borne Disease Working Group. I am sure everyone is interested in your response.

Excerpt from the BMJ Letter to the Editor:

Re: Lyme borreliosis: diagnosis and management
https://www.bmj.com/content/369/bmj.m1041/rr-1

In reference to “persistent infection after extensive antibiotic treatment,” an astute fifth grader with access to PubMed could find the following short list of publications: (there are actually hundreds) [1]

I would like to call attention to the following 1995 study from Stony Brook Lyme clinic. I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication.

1. Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837

Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d

aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA

Eur Neurol 1995; 35:113–117 (DOI:10.1159/000117104)

Abstract

We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.
___________________________________________________

Let’s review another early publication where persistent infection was recognized:

May 13, 1988

2. Fatal Adult Respiratory Distress Syndrome in a Patient With Lyme Disease
Michael Kirsch, MD; Frederick L. Ruben, MD; Allen C. Steere, MD; et al

JAMA. 1988;259(18):2737-2739. doi:10.1001/jama.1988.03720180063034

Abstract

A dry cough, fever, generalized maculopapular rash, and myositis developed in a 67-year-old woman; she also had markedly abnormal liver function test results. Serologic tests proved that she had an infection of recent onset with Borrelia burgdorferi, the agent that causes Lyme disease. During a two-month course of illness, her condition remained refractory to treatment with antibiotics, salicylates, and steroids. Ultimately, fatal adult respiratory distress syndrome developed; this was believed to be secondary to Lyme disease.

3. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-c

The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy. Spirochetes were identified as Borrelia burgdorferi by molecular testing with specific DNA probes.

4. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
http://danielcameronmd.com/culture-evidence-of-lyme-disease-in-antibioti

Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment

5. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274

Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.

6. The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963883/

Autopsy tissue sections of the brain, heart, kidney, and liver were analyzed by histological and immunohistochemical methods (IHC), confocal microscopy, fluorescent in situ hybridization (FISH), polymerase chain reaction (PCR), and whole-genome sequencing (WGS)/metagenomics. We found significant pathological changes, including borrelial spirochetal clusters, in all of the organs using IHC combined with confocal microscopy.

7. Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33

“This pilot study recently identified chronic Lyme disease in twelve patients from Canada. All of these patients were culture positive for infection (genital secretions, skin and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.”
________________________

Persistent infection after extensive antibiotic treatment has been identified through the use of direct detection methods in academic centers and autopsy findings yet the average patient cannot obtain these tests to justify how sick they are with their chronic active infection. Serology cannot be used to gauge treatment failure or success which makes it the ideal tool for concealing persistent infection.

Serology has allowed the 30-year dogma to persevere [2] whereas direct detection methods are exposing the exact opposite.

We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control whatsoever; a public health disaster. And what was the reason for the mishandling of this coexisting pandemic you might ask?

A chronic relapsing seronegative disease does not fit the vaccine model. The rush to create a vaccine here in the United States promoted the denial of persistent infection and focusing on the acute stage of disease hides the horribly disabled.

Questions: Is there a reason why Prof Kullberg did not include my seven references of persistent infection in his BMJ article?

Respectfully Submitted,

Carl Tuttle

Hudson, NH USA

References

[1] 700 articles LYME Evidence of Persistence (personal Dropbox storage area)
https://www.dropbox.com/s/n09sk90eo6xz7ua/700%20articles%20LYME%20Eviden

[2] Lyme Disease Is Hard to Catch And Easy to Halt, Study Finds
New York Times By GINA KOLATA Published: June 13, 2001
http://www.nytimes.com/2001/06/13/us/lyme-disease-is-hard-to-catch-and-eContentious 9 Hour WG Meeting: Persistent infection a Religious Belief? WG Co-Chair Says Yes – Lyme Disease AssociationPat Smith Describes Pre-Meeting Effort to Minimize Lyme. Below in For the Record are the written comments LDA President Pat Smith, a… https://lymediseaseassociation.org

Category:

Activism, Lyme

Leaky Gut Syndrome: A Treatment Guide

https://www.treatlyme.net/guide/leaky-gut-syndrome-a-video-treatment-guide

By Dr. Marty Ross

Leaky_Gut_Syndrome_feature

Leaky Gut Syndrome in Lyme Disease

In this video article I explain

  • the medical pathology of Leaky Gut Syndrome,
  • the causes of Leaky Gut Syndrome,
  • why Leaky Gut Syndrome leads to food allergies and inflammation, and
  • an approach to treat and fix Leaky Gut Syndrome.

Watch first, then read the details about my treatment recommendations in the area below the video. Note, there are limited studies in humans regarding whether treating leaky gut syndrome makes a real difference. However, in my practice, I find benefits for most of my patients when I treat Leaky Gut Syndrome.  (Go to link for article)

 

Category:

Gut Health, Lyme

Lyme Disease Misdiagnosed as Shingles

https://danielcameronmd.com/lyme-disease-misdiagnosed-as-shingles-in-a-62-year-old-man/

LYME DISEASE MISDIAGNOSED AS SHINGLES IN A 62-YEAR-OLD MAN

man with lyme disease and shingles at doctor's office

A recent article, published in the journal Clinical Case Reports, describes the case of a 62-year-old man, from Norway, who was initially diagnosed with shingles, a viral infection which produces a painful skin rash with blisters in a localized area on the body. [1] Shingles, also known as herpes zoster, is common in older individuals who have had chickenpox.

By

According to Hansen and colleagues, the patient was admitted to the emergency department complaining of epigastric pain that had been ongoing for 4 to 5 weeks. “He described a constant pain with episodic worsening,” writes Hansen. The pain began with a rash in the man’s right upper quadrant area.

Physicians considered several diagnoses. The man had a history of migraines, anxiety, colon polyps, and had been treated for gastroesophageal reflux disease (GERD). Small gallbladder stones were present but were not acute.

The man was diagnosed with shingles and prescribed acyclovir and pregabalin. Despite treatment, he remained ill. His pain increased and “he developed additional symptoms including nausea, lethargy, decreased appetite, constipation, decreased size and force of the urinary stream, and a 5–7 kg weight loss,” writes Hansen.

Imaging and lab tests were negative and the man was discharged. However, one week later, he was re-admitted to the hospital because “his general practitioner did not find it reasonable that his anxiety could explain his current symptoms,” says Hansen.

The man lived in an area endemic for Lyme disease. Although he did not recall a recent tick bite, he had been bitten previously, so serologic tests for Lyme disease were performed. Because his titers of B. burgdorferi IgG were so high and he had a history of tick bites and a rash, a lumbar puncture was ordered. Results were positive.

The 62-year-old man was diagnosed with Lyme disease. His symptoms, except for fatigue, resolved after a 3-week course of IV ceftriaxone. “His weight is now normalized and he has no problems with constipation,” explains Hansen. “The abdominal pain is almost gone. His main problem is fatigue but this is gradually improving.”

The authors point out that atypical clinical presentations of Lyme disease can occur, including gastrointestinal manifestations because of autonomous dysfunction, as was seen in this case.

Related Articles:

What happens to the brain during acute Lyme neuroborreliosis?

At least 50% of patients with Lyme neuroborreliosis remain ill years after treatment

When it looks like a brain tumor but it is Lyme disease

References:
  1. Hansen BA, Finjord T, Bruserud O. Autonomous dysfunction in Lyme neuroborreliosis. A case report. Clin Case Rep. 2018;6(5):901-903.

Category:

Lyme, research

10 Years of Headaches, Vertigo, and Other Pains Dismissed as “Depression”

https://www.lymedisease.org/negraconlyme-rhisa-perera/

10 years of headaches, vertigo and other pains dismissed as “depression”

rhisa perera

By Rhisa Perera

I was born in Brooklyn in 1990, to a Puerto Rican mom and an Irish and Spanish dad. I was raised in Staten Island. In 2007, my senior year of high school, I started getting GI issues that lasted for about a year.

In 2009, after a few weeks in Puerto Rico, I came back to New York City and one day I got super dizzy, with a pounding headache. That headache literally did not stop for 10 years.

I went to my primary doctor, multiple ENTs, multiple neurologists, physical therapy, had many tests in the hospital. No answers. They gave me different antidepressants—for a decade. When my symptoms didn’t go away, they increased the dose or changed the medication. If you are familiar with those drugs, you know changing them takes a while to kick in, which is not fun.

In March of 2019, I woke up in the morning to go to work. My neck felt stiff as a board and I could not move my head from side to side. It felt as if there was a metal rod from the base of my skull to my pelvis.

“Your labs are normal”

I made it to work but was in such bad shape that my supervisor called an ambulance. The hospital ran the usual blood tests and then told me: “Your labs are normal, you’re most likely in pain because you’re depressed.”

I was never examined, never asked any questions, nothing. That is basically how I’ve been treated by every medical professional I’ve ever seen. I have a drawer full of medications I’ve been prescribed over the last decade.

In July, my headaches and vertigo came back full blown. At this point, I was in between jobs, so I was also in between insurance coverage. So, I just started doubling up on my medication. I had to find some relief and be a normal functioning human being for my wedding that was coming up in August.

It must have worked. I enjoyed most of my time in Puerto Rico and my wedding, except for the fatigue that would kill me at night.

By the end of August, I was back in the states and walking down the street in NYC. Out of nowhere, I felt like I’d been hit by a truck. By the next day, I was feverish, shaking, having cold sweats and could barely lift my head. My aunt took me to the ER and my temperature was 103. They diagnosed me with pneumonia and kept me there overnight on an IV and oral medication.

What about Lyme disease?

Because I was still having headaches, in September, I saw a new doctor. When I described my symptoms to her, she asked, “Have you been tested for Lyme disease?” I responded, “The bug thing?” I knew nothing about it. She said she thought I had it and ordered blood work.

A couple days later I got a message from the doctor: “Your labs are normal, but you did test positive for Lyme disease. That most likely explains your headaches and muscle/joint pain. I am sending in doxycycline to your pharmacy. Take it for two weeks and then I will see you for a follow up.”

I took the antibiotics as instructed. When I was almost done with the pills, my vertigo was so bad I couldn’t walk straight. I had absolutely no idea what was going on. I went back to the doctor, who wanted me to see a neurologist because all of a sudden, I was cured of Lyme and the symptoms had to be something else.

The neurologist saw me for a few minutes and swore I was HIV positive. Such disrespect! I walked out and saw another neurologist who didn’t help either.

I went home, feeling defeated. Then, remembering that I was part of a Facebook support group for migraine sufferers, it popped into my head that there must be Lyme disease support groups, as well. That realization turned me in a new direction! I found a group and started learning as much as I could.

What I discovered about Lyme disease

I found out how Lyme is not believed to be chronic by the majority of physicians and that many believe Lyme doctors are quacks. They believe Lyme is hard to get and easy to treat. (Half the time when I tell a doctor I have Lyme disease, they say I don’t or ask if I was treated. Like sure, that two-week antibiotic cycle killed years of bacteria that took over my muscles, joints, brain, and gut.)

Then, after watching the Lyme documentary Under Our Skin, I started looking for a Lyme-literate medical doctor.

When I was finally evaluated by someone who knew what to look for, I found out I had Borrelia (Lyme), Babesia, Bartonella, Rocky Mountain spotted fever, mycoplasma, Ehrlichia, high levels of candida in my gut, Epstein-Barr, and schistosomiasis (parasitic flatworms).

Currently I am only detoxing and treating holistically and with diet, as my body cannot tolerate antibiotics at this point. I’m learning what these bacteria crave and trying to avoid those things.

It’s tough and I go through periods where I am super angry that it’s taken this long to get some relief. It’s a weird life to live but I’m doing it.

Rhisa Perera writes NegraConLyme, from which this blog is adapted.

____________________

**Comment**

How many more have to go through this misery before ‘authorities’ are willing to listen and adjust their thinking?

 

Category:

Activism, Lyme

Tick-Borne Disease Working Group Meeting Sept 15 & 22. Submit Comments by Sept. 4

https://www.lymedisease.org/tbdwg-sept-4-deadline/

TBD Working Group meets Sept. 15 & 22; submit comments by Sept. 4

Tcvik-borne disease working group

The federal Tick-borne Disease Working Group will meet online on two non-consecutive days, September 15 and 22, from 9 a.m. to 2:30 pm, Eastern Time.

The TBDWG will review the draft 2020 Report to Congress, and review and approve graphics and images for the report.

Public comment may be provided verbally or in writing. Thirty minutes has been set aside for verbal comments on September 15.

Persons who wish to provide verbal or written comments should review directions at the Tick-Borne Disease Working Group website.

Written comments or requests to deliver verbal comments must be submitted by midnight, Eastern Time, Friday, Sept. 4.

 

Category:

Activism, Lyme