Archive for the ‘Transmission’ Category

Florida Wildlife Officer With Lyme Disease Opens Up About Living With Tick-borne Illness

https://www.foxnews.com/health/florida-wildlife-officer-lyme-disease-ticks

Florida wildlife officer with Lyme disease opens up about living with tick-borne illness

By Madeline Farber | Fox News
Published June, 2019
Lyme disease: What you need to know

Lyme disease: What you need to know

(Outdated Informational Video Found in above Link)

Every year 30,000 Americans are infected with Lyme disease. Find out how to prevent and treat the condition

When it comes to living with Lyme disease, an officer with the Florida Fish and Wildlife Conservation Commission (FWC) wasn’t afraid to be candid about how the tick-borne illness —  which he says he contracted while on the job —  has affected him.

Officer Lee Lawshe recently told local news station News4Jax about the disease he said changed his life forever.

The wildlife officer said he lived with the illness for years before he was formally diagnosed with the disease, which is primarily caused by two types of bacteria —  Borrelia burgdorferi and Borrelia mayonii — in the U.S., specifically, according to the Mayo Clinic. Lawshe received the diagnosis in 2018.

He told the news station he will live with the disease for the rest of his life due to the length of time it took to receive an official diagnosis. (Some patients who contract the disease may at first receive a negative blood test for Lyme disease, per the Centers for Disease Control and Prevention.)

KENTUCKY TODDLER’S TICK BITE LED TO RARE DISEASE, MOM WARNS: ‘I WOULDN’T WISH THIS UPON MY WORST ENEMY’

Though Lawshe told News4Jax he takes medication for the disease, there are days where he has trouble getting out of bed. Last year, he had to take half a year off of work due to the severity of his symptoms.

“It’s really just turned our lives upside down,” Lawshe told the outlet. “I used to do whatever I wanted to, whenever I wanted to.”

Lawshe spends a lot of time outdoors for his job. Some days, he will come home with numerous ticks on his body.

“I’ll go in the woods and pull 100 ticks off me. My wife sits and picks [ticks] off, 40 or 50 at a time. Do I get them all? Maybe, maybe not,” he said.

According to the Mayo Clinic, those who spend time in “grassy and heavily wooded areas” are more likely to contract Lyme disease, which is curable with antibiotics, especially if caught early.

“Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints,” the CDC added.

Early symptoms of the disease include a rash at the infected tick bite site as well as fever, chills, fatigue, headache, body ache and other flu-like symptoms, per the Mayo Clinic.

Those with Lyme disease may also later develop a rash on other areas of the body, joint pain and even neurological problems such as meningitis and numbness in the limbs. Some infected can also experience severe fatigue and eye inflammation, according to the medical facility.

In a statement to News4Jax, the FWS said it’s taking “all preventative measures including the use of enhanced repellants.”

“We stand behind our employees and will do anything we can to support them and ensure their well-being,” it added.

_________________
**Comment**
The presentations of Lyme symptoms are wide and variable – with many never getting a rash at all.  https://madisonarealymesupportgroup.com/2019/03/26/formally-challenging-cdc-advice-on-lyme-disease-rashes/  It does not take 36-48 hours of tick attachment to get Lyme:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/
Lyme is everywhere and and has been found in every single state. Telling people where Lyme is and where it isn’t has been killing people for over 40 years:
It is true that working outdoors increases your risk as well as having pets that go outdoors.  Prevention needs to be taken as seriously as a heart-attack. 
And while ticks are certainly a big part of this issue, many feel there are other routes of transmission:  https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

Category:

Activism, Lyme, Ticks, Transmission, Treatment

Death of Hampton Man With Rare Tick-borne Virus Probed

Please read comment below article….Powassan is not rare.

https://www.njherald.com/20190609/death-of-hampton-man-with-rare-virus-probed

Death of Hampton man with rare tick-borne virus probed

Submitted photo – Armand Desormeaux, of Hampton, right, is seen with his daughter, Dianne Rude, in a June 2018 photo. Desormeaux had tested positive for the rare tick-borne Powassan virus. He died May 16, and the cause of death has yet to be determined.

 

By Lori Comstock New Jersey Herald

Posted: Jun. 9, 2019
An investigation by the Sussex County Division of Health is underway after two cases of the rare tick-borne Powassan virus were confirmed in Sussex County this week.

One of those persons who tested positive for the virus died in May, according to officials, but the immediate cause of death has yet to be determined.

Should it be confirmed that the cause of death was the virus, it would be the first death in Sussex County and only the second confirmed fatality due to the virus in the state, according to Donna Leusner, spokesperson for the state Department of Health. It would also be only the 10th confirmed death in the United States since 2008, according to data from the Centers for Disease Control and Prevention.

The second individual confirmed to have Powassan in Sussex County is recovering at home, Leusner said.

While officials declined to disclose the names, ages or hometowns of the patients due to privacy concerns, on Friday, Dianne (Desormeaux) Rude told the New Jersey Herald she received confirmation on Monday that her father, Armand Desormeaux, 80, of Hampton, was one of those confirmed Powassan cases in Sussex County. Desormeaux passed away on May 16 at Newton Medical Center.

Rude said her father’s infectious disease doctor confirmed the diagnosis on Monday following testing done by the Centers for Disease Control and Prevention.

According to Rude, her father, while he suffered with several medical issues over the years, was quite active up until May 6, when he began running a high fever.

Rude, who lives next door to her father on Halsey Road, took Desormeaux to the hospital, where he was checked out and released, she said. Within 12 hours, Rude said, her father’s health quickly deteriorated and he was taken by ambulance back to Newton Medical Center.

“He was having seizures, shaking uncontrollably,” Rude said.

Suspecting possible Lyme disease, Rude said her father remembered being bit by a tick around April 15 while he was gardening, but had removed it himself and didn’t think much of it because it didn’t form a rash.

Rude said her father was suffering with tremors, violently shaking, unable to verbalize and started losing the ability to move his limbs. While her father had previously been diagnosed with chronic obstructive pulmonary disease, or COPD, a progressive lung disease, Rude said his symptoms made sense when she received the call Monday that he had the tick-borne disease.

The Powassan virus, named after the Ontario community where it was first discovered in 1958, is spread through the bite of an infected black-legged, or deer, tick, which caries Lyme disease, or the woodchuck tick, according to a press release sent to the New Jersey Herald from the Sussex County Department of Health.

While some people do not develop any symptoms, others may develop symptoms one week to one month after being bitten. Symptoms include fever; headache; swelling of the brain, also called encephalitis; swelling of the membranes that surround the brain and spinal cord, also known as meningitis; vomiting; weakness; seizures; fever with stiff neck; limb weakness; confusion; loss of coordination; trouble speaking; and memory loss, according to the county health department.

Those with other medical conditions are at a higher risk of developing complications from the virus. Several clinical reports indicate the virus is fatal in about 10% to 15% of cases. For the survivors, about half will suffer with permanent neurological symptoms, such as paralysis, cognitive difficulties and muscle wasting, the Centers for Disease Control and Prevention states.

Rude, who posted about her father’s diagnosis on Facebook initially to friends only, said she didn’t expect to get much attention from it. But after her friends shared her post on public forums, Rude said she is glad to be “opening up a world of conversation” about a tick-borne illness that isn’t Lyme disease, which is the most commonly known.

While she continues to mourn the loss of her father, a U.S. Marine who worked as a custodian at Frankford Elementary School until his retirement in 2007, Rude believes that telling others of her father’s diagnosis could prevent others from being infected.

“Spray your yards, Frontline your animals and check yourself for ticks,” she said.

Frontline is a flea and tick protection product.

The Powassan virus is so uncommon that just one other person — a 51-year-old Warren County woman in 2013 — has died from the virus in New Jersey. Since 2013, there have only been 10 confirmed cases in the state, including the two confirmed this week in Sussex County, according to Leusner.

Nationally, there have been about 75 cases of Powassan virus reported in the past 10 years, most of the cases in the northern woodlands of Minnesota, Wisconsin, Massachusetts and New York.

There is no medicine or vaccine to cure or treat the virus, but there are several ways to reduce the risk of getting the virus.

When headed outdoors, avoid contact with ticks by steering clear of wooded areas with tall grass, stick to hiking in the center of a trail and apply insect repellent to clothes and gear with permethrin, a substance that incapacitates ticks and prevents them from biting. Wear long-sleeved shirts and light-colored clothes to be able to see ticks, and tuck long pants into socks. Check the body for ticks, and if one is found, remove it immediately.

It is important to seek medical attention if symptoms develop.

For more information about Powassan, visit the state Department of Health website at www.state.nj.us/health/cd/topics/powassan.shtml and the Centers for Disease Control and Prevention at www.cdc.gov/powassan.

Lori Comstock can also be reached on Twitter: @LoriComstockNJH, on Facebook: http://www.Facebook.com/LoriComstockNJH or by phone: 973-383-1194.

_________________

**Comment**

Powassan is NOT rare.

http://www.coppelabs.com/blog/why-is-powassan-virus-infection-still-described-as-rare-and-mysterious/  Please read the following excerpt by Coppe Lab here in Wisconsin,

For the last two years, Coppe Laboratories has dedicated a significant amount of time and resources to dispelling the myth that infection with Powassan virus, a virus transmitted by tick bite, is rare. The Centers for Disease Prevention and Control (CDC) reports only 100 cases of Powassan virus infection in the United States in the last 10 years. Indeed, that statistic gives the illusion that Powassan infection is rare. However, did you know that the only infections reported to CDC are those that are life-threatening, particularly cases causing severe inflammation of the brain like the case reported in LiveScience? Coppe has published three new papers in the last year that clearly show Powassan virus infection is not rare are at all, and until testing for this virus is included as part of tick-borne disease screening panels infections will continue to be underreported. Coppe’s Powassan Guide, which can be downloaded from the website, summarizes the findings from both tick and human Powassan prevalence studies, as well as defining the patient populations that would benefit most from Powassan testing.

Coppe Laboratories offers the first commercial panel designed to detect exposure to Powassan virus throughout all stages of infection.

Powassan can be transmitted in 15 minutes, so all the comforting words by the CDC on the emphasis that transmission of Lyme takes anywhere from 24-72 hours falls flat regarding Powassan. Also, to my knowledge, no work has been done on transmission time when multiple pathogens are being transmitted concurrently, or what happens when a person perhaps gets bitten, obtains Powassan but doesn’t have symptoms, and then in the future gets another tick bite and perhaps gets Lyme with that one. Does that second bite activate a latent virus infection with Powassan?

These questions have never been broached by the CDC.

The news article states, the virus can be worse in those with “other medical conditions.”  

Nobody really has a clue what a concurrent infection with Powassan looks like, but I would label that another medical condition. What if someone has Powassan and Lyme?  Or, in my case, what if you have Lyme, Bartonella, Babesia, and then Powassan on top of that?

This is the fly in the ointment that current research is NOT addressing.

In this article Coppe Lab, right here in Wisconsin has uncovered some interesting findings:  https://madisonarealymesupportgroup.com/2016/08/31/wi-coppe-lab-in-the-news/  A study completed in May, 2016 of 106 patients with suspected acute tick borne disease showed 10.4 % had Powassan.  Nearly 17% of the patients with positive Lyme results also tested positive for POWV exposure. The authors concluded,

“Infection with POWV may be underdiagnosed and may contribute to the persistent symptoms often associated with Lyme disease diagnosis.”16

They postulate:

In both studies, the percentage of Lyme patients co-infected with POWV was about 17%, coinciding with the 10 – 20% of patients treated for Lyme that develop lingering symptoms attributed to post-treatment Lyme disease syndrome.

One thing’s for sure.  The CDC is not getting the memo because every single article I read on Powassan calls it “rare.”  

Question to ponder:  How many have to die before something is no longer rare?

 

Category:

Activism, Lyme, Transmission, Viruses

Emerging Tickborne Illnesses: Beyond Lyme Disease

https://www.clinicaladvisor.com/home/topics/infectious-diseases-information-center/emerging-tickborne-illnesses-beyond-lyme-disease/

Emerging Tickborne Illnesses: Beyond Lyme Disease

Kimberly Damato, PA-C
Danielle Kruger, PA-C, MS Ed
With more than 30,000 cases diagnosed per year, Lyme disease is the most commonly reported vector-borne illness in the United States, and in 2015 it was the sixth most common nationally notifiable disease.

Tickborne diseases in the United States are a significant public health problem, and in the past 50 years scientists have detected at least a dozen new such infections. With more than 30,000 cases diagnosed each year, Lyme disease is the most commonly reported vector-borne illness in the United States, and in 2015 it was the sixth most common nationally notifiable disease.1

Due to increased education and recognition, most practitioners are familiar with the symptomatic presentation of Lyme disease. In stage 1, patients usually exhibit the classic erythematous expanding annular “bulls-eye” rash known as erythema migrans, and approximately 50% experience constitutional flu-like symptoms. In stages 2 and 3, or disseminated Lyme disease, patients may present with Bell’s palsy or other cranial nerve deficits, arthritis, peripheral neuropathies, and cardiac manifestations such as transient heart block and carditis.

Borrelia burgdorferi, the spirochete that causes Lyme disease, is not the only pathogen spread by the deer tick Ixodes scapularis in the northeastern United States:

  • Babesia microti, the agent of babesiosis, and
  • Anaplasma phagocytophilum, the agent of human granulocytic anaplasmosis (HGA; formerly human granulocytic ehrlichiosis) are asserting a presence in similar geographic regions. Coinfection with these organisms is possible.
  • Human monocytic ehrlichiosis (HME), caused by Ehrlichia chaffeensis, is another emerging tickborne disease with similar geography to HGA.

The incidence of babesiosis, HGA, and HME is increasing, and the geographic areas for their tick vectors are expanding. HME and HGA can be serious infections with high rates of hospitalization and complications, particularly when diagnosis or treatment is delayed.

Epidemiology

Babesia microti is the predominant protozoan cause of babesiosis in the United States; occasional sporadic cases of babesiosis caused by other species have been reported. Babesiosis is transmitted by the bite of an infected I scapularis (commonly known as the black-legged or deer tick) (Figure 1), usually in the nymphal or adult stage. The primary carrier of Babesia are white-footed mice, although it is found in other small mammals. Although white-tailed deer are the most important food source for the adult stage of the tick, deer are not infected with B microti.2 Babesia is rarely transmitted by blood transfusion, organ transplant, or vertically during pregnancy. The incidence of transfusion-transmitted babesiosis in the United States is 1.1 cases per million red blood cell units distributed.3

Figure 1. Ixodes scapularis, also known as the deer tick or black-legged tick. Image courtesy of the Public Health Image Library of the Centers for Disease Control and Prevention.

HME is caused by Ehrlichia chaffeensis, anobligate intracellular gram-negative species of rickettsial bacteria that grows within membrane-bound vacuoles in human and animal leukocytes.4,5 Less commonly, human disease is caused by E ewingii, the organism responsible for canine granulocytic ehrlichiosis. The principal vector of E chaffeensis is the lone star tick (Amblyomma americanum) (Figure 2). Other ticks occasionally have been found to contain DNA of E chaffeensis, but their role in transmission is unlikely.4 The white-tailed deer is the main competent reservoir for E chaffeensis, although domestic goats, dogs, raccoons, and coyotes may also carry the bacterium.

Figure 2. Amblyomma americanum, or the lone star tick. Image courtesy of James Gathany from the Public Health Image Library of the Centers for Disease Control and Prevention.

HGA is caused by the gram-negative bacterium Anaplasma phagocytophilum, which is transmitted byI scapularis, the same vector of Lyme disease and babesiosis. I pacificus, the western black-legged tick, is the primary vector of HGA in the western United States. Also similar to Lyme disease, deer and the white-footed mouse are the principal animal hosts for HGA.

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**Comment**

Glad word is getting out about the prevalence of other diseases spread by ticks as most of us are infected with numerous things making our cases more severe, of longer duration, and necessitating numerous medications.

What I am concerned about is the continued effort to put all of this into a 2 minute sound bite.

Nothing about treating this is easy or simple.  It takes education, savvy, experience, and most of all – an open mind.

Having listened to ILADS trained doctors for hours on end I learned that we are extremely complex cases with vast individuality.  Some struggle with Mast Cell disorders, some have severe psychiatric issues, and on and on. There is no way a singular treatment plan will cover the wide and varied presentations of this plague.

A few considerations of the article:

  1. Most doctors are NOT aware of the symptoms of Lyme disease which mimics over 300 different diseases:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/.  They keep misdiagnosing patients every single day. Doctors are afraid to even treat this and would rather diagnose you with ANTHING other than Lyme/MSIDS. Even if they diagnose you they will treat you with the antiquated and unscientific CDC “Lyme guidelines” which have produced treatment failures since the beginning.  https://madisonarealymesupportgroup.com/2018/12/15/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients/
  2. The three stages of Lyme they present is outdated.  Many never experience some stages or they can jump straight to third stage. This article tells the story of a little girl that within 4-6 hours of tick bite developed facial palsy and couldn’t walk or talk.  That’s fast. I guarantee you, she isn’t the only case like this. In my own case all my initial symptoms were gynecological.  Mainstream medicine would consider Lyme/MSIDS in a million years – yet, that’s exactly what it was: https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/  If doctors fixate on a set prescribed stage order they will miss many people – which they already are.  This is not Simple Simon met a pie-man.
  3. Again, many never get a rash and I never had flu-like symptoms.  I had raging ovarian pain and a swollen knee.

For more on the coinfections listed:

https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

https://madisonarealymesupportgroup.com/2018/12/02/everything-thats-known-about-ehrlichiosis/

https://madisonarealymesupportgroup.com/2016/03/08/anaplasmosis/

If you also are infected with Lyme as well as other pathogens, you are one sick dog and need a trained ILADS professional.  Contact your local support group for these professionals.

 

 

Category:

Activism, Anaplasmosis, Babesia, Lyme, Ticks, Transmission

First US Human Bite From Worrying Longhorned Tick Noted (But it’s Actually The Second Human bite)

http://www.cidrap.umn.edu/news-perspective/2019/06/first-us-human-bite-worrying-longhorned-tick-noted

First US human bite from worrying longhorned tick noted

Lisa Schnirring | News Editor | CIDRAP News

Jun 03, 2019

 

In a report last week, researchers described the first human in the United States known to bitten by an Asian longhorned tick, a rapidly spreading invasive species that the US Centers for Disease Control and Prevention (CDC) warned about last year.

Though the 66-year-old man did not get sick, scientists know that Haemaphysalis longicornis can harbor bacteria that can cause human and animal diseases—possibly including Lyme disease—and an investigation into areas where the man lived found the tick in locations other ticks aren’t typically found, which could lead to changes in public health risk messaging.

A team from the CDC, New York, and New Jersey reported the findings on May 31 in Clinical Infectious Diseases.

The tick was found in the United States for the first time in 2017 on a sheep in New Jersey, and since then, the species has been found in at least 10 states, mainly in the eastern states but also Arkansas. It’s still not known how widespread Asian longhorned ticks are in the United States, but health officials are worried, because they are aggressive biters.

Females can produce massive numbers of offspring without mating, and in some parts of the world—such as New Zealand and Australia—the species have reduced production in dairy cattle by 25%.

Ticks found on sunny lawns

According to the new report, a 66-year-old man from Yonkers, New York, removed a tick from his leg in June 2018. He had not traveled outside his home county for the past 30 days, and his only outdoor exposure was his lawn and one other lawn in the same area. His doctor prescribed him a single 200-milligram dose of doxycycline, presuming that the tick was Ixodes scapularis, the most common US Lyme vector.

Later that day, the patient took the tick to the Lyme Disease Diagnostic Center in Westchester, New York. He didn’t have any symptoms at the time and didn’t get sick over the next 3 months.

Testing in New York identified the tick as an Asian longhorned tick nymph, with genetic sequencing adding more evidence affirming the finding. The National Veterinary Services Laboratory in Ames, Iowa, further confirmed the finding.

Tick sampling using corduroy drag cloths found Asian longhorned ticks on the patient’s manicured lawn, some of them in direct sun. More were found in the park across the street from the patient’s house, both in open, cut grass exposed to direct sun and in taller, shaded grass next to the woods. Testing also found ticks on a nearby public trail, in mowed short and midlength grass near the trail edge, both in full sun and partial shade. The discovery of the ticks near the man’s house were the first known collections in New York state.

The authors wrote that finding the ticks on manicured lawns and in open sun may be significant, because public education efforts often stress that Ixodes scapularis ticks—the most common biting tick in New York state—are found in wooded areas or shaded grass.

Next steps for ongoing threat

In a related editorial in the same issue, Bobbi Pritt, MD, MSC, with the division of clinical microbiology at the Mayo Clinic in Rochester, Minnesota, wrote that though the report of a human bite isn’t surprising, it proves that the invasive longhorned tick continues to bite hosts in its newest location.

“This is extremely worrisome for several reasons,” she wrote. One reason is that Asian longhorned ticks can carry several important human pathogens, including the potentially fatal severe fever with thrombocytopenia syndrome (SFTS) virus and Rickettsia japonica, which cases Japanese spotted fever. “While these pathogens have yet to be found in the United States, there is a risk of their future introduction,” she added.

Also, Pritt said several other human pathogens have been detected in the ticks, but it’s not clear the Asian longhorned species are able to transmit them to humans. They include Anaplasma, Ehrlichia, Rickettsia, and Borrelia species. Lyme disease is caused by Borrelia burgdorferi bacteria.

She warned that the organisms are present in states where longhorned ticks have been found and that it’s possible that the tick—known to be an aggressive biter—might be able to transmit Heartland virus, given its close relationship to SFTS virus.

Pritt said it’s clear that the invasive species is here to stay for the foreseeable future, and next steps should include public awareness campaigns that incorporate the new information, easy-to-use resources for labs to identify the tick, and more research to understand the implications of the new findings.

See also:

May 31 Clin Infect Dis abstract

May 31 Clin Infect Dis commentary

Nov 30, 2018, CIDRAP News story “CDC: Worrisome longhorned tick spreading rapidly in US”

___________________

**Comment**

The actual first human bite by the Asian Longhorned tick was in 2018 & in Connecticut:    https://madisonarealymesupportgroup.com/2018/10/03/1st-person-bitten-by-east-asian-longhorned-tick/

No pathogen transmission has happened by this tick in the U.S. so far, but as the article states is responsible for numerous diseases in Asia.

A number of concerning issues:

 

Category:

Activism, Ticks, Transmission

Mum of Three Unable to Eat, Walk, Or Leave Her Bedroom Because of Tick Bites

https://www.mirror.co.uk/news/uk-news/mum-three-unable-eat-walk-16252344?utm_source=facebook.com&utm_medium=social&utm_campaign=mirror_main

Mum-of-three unable to eat, walk or leave her bedroom because of tick bites

EXCLUSIVE: Once a busy career woman, Joanne Baskett, 46, now needs 24-hour care because of Lyme disease
By Matt Roper

8 JUN 2019

Joanne discovered she had been infected by Lyme at least three times
Joanne discovered she had been infected by Lyme at least three times (Image: Joanne Baskett)

Busy mum-of-three Joanne Baskett had no idea the tiny ticks she found on her cat could carry disease, let alone completely destroy her life in just a few years.

A few days later as she was trimming the hedge at the bottom of her garden she found one of the insects buried in her own skin, and removed it with the same tick tool she had used on her pet.

When a red, bullseye rash appeared around the bite she went to her GP, who gave her medicine for ringworm.

And by the time, six weeks later, she came down with a fever and flu-like symptoms, a swollen throat, ear ache and heavy legs, Joanne didn’t imagine it was anything to do with the insect THAT had bitten her in her garden.

In fact Joanne, whose children were six, nine and 13, had been infected with Lyme disease, a bacterial illness spread by the bloodsucking deer tick, which is about the size of a poppy seed.

The disease is rare, with less than a third of deer ticks carrying it, and less than five per cent of bites resulting in an infection.

Joanne was a busy mum and career woman (Image: Joanne Baskett)

Incredibly, though, when Joanne finally discovered what the mystery illness was that was slowing devastating her body, paralysing vital organs including her stomach, bladder and bowel, she found out that she had been very unlucky indeed.

Scientists in America who tested her found she had been infected on at least THREE separate occasions – once in Greece, once in the States and then by the tick in her garden in Swindon, Wilts.

The makeup of Lyme disease is different in each region, and she was carrying four different strains, which she could only have contracted in those countries.

But by the time she had finally been diagnosed, Joanne was a shadow of her former self, bed bound, unable to walk, eat or even wash herself and needing round-the-clock care.

And because the pathogens in her body had suppressed her immunity, Joanne was also fighting HPV squamous cell carcinoma – the early onset of cancer – which has meant she has had 36 surgeries with much of her reproductive and excretory organs removed.

Lyme is spread to humans by the deer tick (Image: Getty Images/iStockphoto)
Yet incredibly she has had no treatment for Lyme disease – the cause of all her problems – despite having three different clinical diagnoses of the illness.

Joanne, 46, says the NHS is “in complete denial” of Lyme, claiming that tests in Britain aren’t thorough enough to test positive for the disease in many cases.

She said: “The NHS won’t treat me. They only us serology testing which looks for antibodies but because I was on steroids at the time I was bitten and couldn’t produce antibodies so they discarded the possibility of Lyme.

“Since then I’ve had diagnoses from three different professionals in Germany, America and Ireland.

“And to my shock I didn’t have just one strain of Lyme like most people, I had four. I had been bitten and infected with Lyme at least three times.

“I tested positive for your strains of Lyme and seven infections caused by Lyme.

“Two were from America, probably picked up when I was in Connecticut in 1993.

“And one was from Europe, which was probably during a backpacking trip in the Greek islands when I was bitten by lots of insects.

Joanne’s stomach, bowels and bladder are paralysed (Image: Joanne Baskett)

“It has ruined by life. I don’t have a life anymore. I’m permanently disabled now, I have spent the last eight years of my life inside my bedroom.

“I have carers coming in three times a day to help undress me, often I’m too unwell to be helped to my wet room so they have to wash me in bed. Sometimes I can’t stand up or even hold anything.

“If I had been diagnosed earlier it would certainly have stopped my illness progressing to the stage it’s at now, which is total bowel paralysis, stomach paralysis and bladder paralysis.

“Slowly but surely my organs are failing on me, and it’s frightening.

“I feel absolutely devastated. Angry isn’t the right word, I would say heartbroken, that my whole life didn’t turn out the way I expected it to, and all because of a tick.

“I don’t know what’s going to happen to me. How long do I have left? My kids have only got me in their life. When I’m not here they won’t have anyone.”

Joanne was an working mum-of-three, an HR consultant travelling around the country to visit clients, when she decided to do some gardening on a hot June day in 2009.

She said: “Three days prior to that, I had been grooming the cat and felt lumps and realised they were ticks, so I removed them with a tick tool. But I never knew they could spread disease, I was totally unaware about that.

“While I was trimming the hedge I found one on my right lower leg.

“I used to tick tool to get it out but it was quite a small one and quite tricky to remove. A few days later I had a rash around where I had been bitten.

“I wasn’t until six weeks later that I began to feel really fluey and not myself.

“My throat was swollen, I had ear ache and heavy legs, and I was getting hot and cold chills.”

Joanne hasn’t left her bedroom for the last eight years (Image: Joanne Baskett)

Joanne’s health quickly went downhill, until the point where she was no longer able to get out of bed.

And her long-term partner left her just a year after her symptoms started, leaving her to look after her three young children alone.

She said: “The disease quickly affected my whole body. I cannot eat because my stomach is paralysed, and my bowels don’t empty without machinery because that’s paralysed too.

“My cognition is very poor so often I can’t think or speak properly. I can’t walk.

“At first my GP said I had fibromyalgia and ME/CFS. I believed that to start with.

“Then a friend told me that a bullseye rash means you have Lyme, and I started to research it. I began to realise that what I had were the symptoms and not the actually illness.

“That’s when I went to a specialist clinic in the States and they found I had four types of Lyme disease. I did tests in Germany and Ireland and the results were the same.

“But when I took the tests back to my GP the NHS didn’t want to know.”

Joanne says she was a “good mum” to her children before she became ill, and “a bit of a foodie”.

She said: “It has been absolutely devastating and soul destroying.

“I haven’t been able to be a proper parent to my children, and they’ve not had a proper mum.

“I wasn’t able to do the things that parents should be able to do, I couldn’t go to their sports days or make them food when they came home.

Joanne has campaigned for a greater awareness of Lyme disease

“They’ve had a really hard upbringing, they’ve seen my struggle so much and even now, seeing my go through so many surgeries, and still now getting better.

“I love cooking and used to love Mediterranean food, I was always cooking fresh meals for my children. But I’ll never be able to eat those foods again.

“Because my stomach is paralysed I vomit everything I eat. I’m now on water, and squares of organic dark chocolate that melt in my mouth.

“That’s all I’ve been able to eat since last year, and I’ve lost 25 per cent of my body weight in that time.”

Joanne believes more needs to be done to warn the public about the dangers of the ticks that carry Lyme.

She said: “These ticks can contain more than four pathogens. If you get bitten by one its touch and go whether you’re going to become disabled or be OK, and we’re not taking it seriously enough.

“I had no idea that tick bites could do this, and ended up losing my home, my career, my partner, everything.

“I’m a completely different person to the one I once was. I worked hard, went to uni, did a lot of extra study to get to where I was, and it was all for nothing. I feel my talent has been wasted.

“Now my brain is affected, my eyesight isn’t good anymore and I my cognition is getting worse.

“If I had known what I know now I might have been able to get help quicker. Now there’s no more time, and it’s very frightening.”

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**Comment**

How many more have to lose their lives to this plague?  How much more suffering has to occur before authorities get their heads out of the sand?

  • First, this is NOT rare!  Do your reading.
  • 22% of deer tick nymphs in Wisconsin are infected with Lyme. The infection rate for adults is around 40-45 %. In some locations infection rates are 75 % of the tick population.
  • Looking at maps and basing diagnostics on where ticks supposedly are and aren’t is asinine.  Research shows birds transporting ticks everywhere.
  • Second, a history of tick bites and you give her ringworm medication?  Really?
  • She gets 3 separate diagnoses and you won’t treat her?  
  • Mark my words – there will be more and more stories just like this one. Things will not change until people in power positions get infected.

Category:

Activism, Lyme, Ticks, Transmission