Archive for the ‘Uncategorized’ Category

Tick Bites Warning As Woman Waits 29 Years For Lyme Disease Diagnosis

https://news.stv.tv/west-central/tick-bites-warning-after-pauline-bowie-waited-29-years-for-lyme-disease-diagnosis  Article and video here

Tick bites warning as woman waits 29 years for Lyme disease diagnosis

University experts working to understand more about ticks found in Scotland.
 STV News
By Susan Ripoll

A woman who waited 29 years for a Lyme disease diagnosis is warning people about the dangers of a tick bites

Pauline Bowie, from Clydebank, was bitten in 1989 and for decades experienced chronic fatigue, heart problems and joint pain. 

She was diagnosed with fibromyalgia and ME, but was still struggling with her symptoms when she heard about Lyme disease.

“I was off work, barely able to get out of bed at times and it was just a throwaway comment from my dad,” the 54-year-old said.

“He had been speaking to a cousin of mine who was getting treated for Lyme disease.”

Pauline googled the virus and finally felt “everything fell into place”.   (See link for article)

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SUMMARY:

  • A ‘throwaway’ comment is quite often how “everything falls into place” for people because  government public health has failed to lead mainstream medicine to truth about this plague. Myths have continued unabated for over 40 years and show no sign of changing.
  • Similarly to this patient, nearly everyone who goes to a regular GP to get standardized testing has a negative test – further propelling the Lyme lies.
  • It wasn’t until this patient, like so many others, uses a more sensitive test – vilified by conflict riddled authorities due to their own patent ownership in testing, that she found out not only did she have Lyme, but numerous other tick-borne infections (TBIs). This is also common in Lymeland.
  • And she, like thousands, if not millions more – don’t receive true help until they see a doctor who specializes in TBIs – who are also vilified and called “quacks” by conflict riddled authorities, and who are hunted down by state medical boards and other professional medical groups and are persecuted for helping patients.
  • The patient admits she’s now in remission but has occasional flare-ups – or relapses, necessitating stints of treatment.  This concept is completely denied, ignored, and vilified by mainstream medicine.
  • She also admits she can do things now she hasn’t been able to do since she was in her 20’s, and that it’s been “life changing.”  DITTO!
  • Scientists as Glasgow University have developed a map where members of the public can upload information about where and when they found ticks, and take samples from hot spots.
  • Evidently people from all over Scotland are stating they’ve never seen ticks like they have this year and the team has found larger numbers in urban areas and gardens, and warns that they are everywhere.
  • The article then gives tick prevention ideas which can also be found here in an article that is more thorough & complete. They also recommend changing into a new set of clothes at the end of your activity which is a good idea.  (Put the others in a tightly secured bag and put in dryer on high for 15-20 min when you get home)
  • They also give a section on what to do if you are bitten.  I believe this article is better.  The article quotes the International Lyme and Associated Diseases Society (ILADS – how to handle a tick bite):

    “ILADS recommends that prophylaxis (preventive treatment) be discussed with all who have had a blacklegged tick bite. An appropriate course of antibiotics has been shown to prevent the onset of infection.

    When the decision is made to use antibiotic prophylaxis, ILADS recommends 20 days of doxycycline (provided there are no contraindications).The decision to treat a blacklegged tick bite with antibiotics often depends on where in the country the bite occurred, whether there was evidence that the tick had begun feeding, and the age of the person who was bitten.  Based on the available evidence, and provided that it is safe to do so, ILADS recommends a 20-day course of doxycycline.

  • Personally, I would treat each and every black-legged tick bite with antibiotics/antimicrobials.  The risk just isn’t worth it. Taking the “wait and see” approach is foolish considering the potential devastating outcome.

Category:

Activism, Lyme, Prevention, research, Ticks, Uncategorized

Former TV Anchor Dies After Battling Lyme Disease For Years

https://www.lymedisease.org/anchorwoman-dies-after-lyme/

Former TV anchor dies after battling Lyme disease for years

Aug. 11, 2022

Leslie Griffith, who anchored the news for San Francisco-area TV station KTVU for over 20 years, has died, reportedly after a years-long battle with Lyme disease. She was 66.

Griffith died Wednesday in Lake Chapala, Mexico, where she lived since 2016.

After leaving KTVU in 2006, the longtime journalist wrote for many news outlets, including the Huffingtom Post and the San Francisco Chronicle.

According to family members, she was bitten by a tick in Oregon in 2015, and suffered the effects of Lyme disease ever since. At this time, her immediate cause of death is unknown.

Watch KTVU’s tribute to Griffith:  https://www.ktvu.com/video/1103909

Category:

Activism, Lyme, Uncategorized

Things I Didn’t Know About Lyme Disease Until I Got It

https://www.globallymealliance.org/blog/things-i-didnt-know-about-lyme-disease-until-i-got-it

Things I Didn’t Know About Lyme Disease Until I Got It

by Jennifer Crystal on June 6, 2022

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >Things I Didn’t Know About Lyme Disease Until I Got It</span>
Here is some important information about Lyme disease that I only learned after having contracted it.

Before I was accurately diagnosed with Lyme disease (and other tick-borne infections)—eight years after being bitten by a tick and developing symptoms—my basic understanding of the illness was that it was transmitted by ticks, it caused a bulls-eye rash, and you got it in the woods. Some of what I knew turned out to be only partially true. When I got diagnosed, began treatment, and started really living as a Lyme patient, I realized there was much more to Lyme disease than I thought. Here are some things I learned that surprised me and might surprise you, too:

1. Not everyone gets a rash.

An Erythema Migrans (EM) rash is a hallmark sign of Lyme disease, but unfortunately, less than 50% of patients develop or see one. If you get one, you unequivocally have Lyme disease and should be diagnosed and treated immediately. If you don’t get one, though, it doesn’t mean you don’t have Lyme; you might just have other symptoms.

2. Not all Lyme rashes look like a bulls-eye.

While EM rashes often present in a bulls-eye shape, they don’t always. Some are red and circular; some are blotchy or spotted; some get crusty. The rashes can look different depending on the shade of your skin, and can be harder to detect on darker skin. If you get a rash that isn’t a bulls-eye, it still may very well be from a tick bite.

3. You don’t just get Lyme disease in the woods.

Ticks are indeed prevalent in the woods, and you should absolutely be Tick AWARE if you are going hiking or if you or your children and pets are spending time in a wooded area. But ticks live other places, too. They’re on playgrounds, on playing fields, in gardens, in long grasses, in beach dunes, in leaf litter, and on stone walls. If you spend time outdoors, you should take precautions against ticks.

4. You can get Lyme disease outside of New England.

Along with the myth that you can only get Lyme disease in the woods, I used to think that you could only get it in New England. In fact, Lyme disease has been documented in all 50 U.S. states except Hawaii, and there are other strains of Lyme disease in other parts of the world.

5. Lyme can come with co-infections.

Lyme is not the only disease transmitted by ticks. Black-legged ticks can transmit other diseases like babesiosis, anaplasmosis, Powassan virus, and possibly Bartonella, some of which require different treatment than Lyme disease (for more information, see my post “Is it Lyme or a Coinfection? Knowing the Difference Can Make a Difference”). There are also other types of ticks that can transmit other diseases (see GLA’s Tick Table). Before I was diagnosed with Lyme disease, babesiosis, and ehrlichiosis, I had never heard of the last two, but they significantly impacted my health. I still struggle with babesiosis symptoms today.

6. No two cases of Lyme disease are alike.

Some people who notice a bullseye rash and get treated immediately get better in a few weeks, which is what’s known as a “typical” or “standard” case of Lyme disease—the only kind I knew of before I got it myself. In actuality, 10-20% of those people go on to experience persistent symptoms—different ones for different patients—and in long-haul cases like mine, Lyme can be much more difficult to treat. Some people experience more neurological symptoms, some experience cardiac symptoms, and others experience joint and muscle pain. Each person’s case is affected by their own immune system, how long it took them to get diagnosed, and whether they have co-infections. There is no set protocol for Lyme disease.

7. There is controversy around Lyme disease diagnosis and treatment.

Before getting diagnosed with Lyme disease, I had maybe heard of the Infectious Diseases Society of America (IDSA) in passing. I had no idea that IDSA represents one “camp” of Lyme disease diagnosis and treatment, while the International Lyme and Associated Diseases Society (ILADS) represents another. I never would have guessed that as a result of this dispute, I would struggle to get insurance coverage for treatment. I was shocked to find that that some doctors would “believe in” my illnesses, and some wouldn’t. I learned quickly that I needed to find a Lyme Literate Medical Doctor (LLMD), explore resources, and be my own best advocate.

Knowledge is power. The more you learn about Lyme disease, the better chance you will have of preventing a tick bite or getting appropriate treatment if you do get one

Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

For more:

Category:

Activism, Lyme, Uncategorized

Caudwell on Son’s Fight With Lyme: ‘Many Times We Thought We’d Lost Him’

https://www.express.co.uk/life-style/health/1597999/phones4u-john-caudwell-lyme-disease

‘Many times we thought we’d lost him’ Phones4u’s John Caudwell on son’s Lyme disease fight

THE BILLIONAIRE founder of Phones4U John Caudwell tried to hold back tears as he opened up about his family’s battle with Lyme disease.
By Luke Whelan

The entrepreneur from Birmingham is estimated to be worth over one and a half billion pounds. Despite the family’s immense wealth, the Caudwells have been just as vulnerable to the tick-borne illness as anybody else. In a recent interview, he said he felt “powerless to help” his son who suffered severely from the condition. Caudwell himself was infected with the disease as well.  (See link for article & video)

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For more:

Category:

Activism, Lyme, Uncategorized

Emerging Tick Borne Diseases in Australia

http://

Emerging Tick Borne Diseases in Australia

Aug. 1, 2022

Dr. Peter Mayne

This recently uploaded video is about a 2011 paper found here:  https://www.researchgate.net/publication/221768948_Emerging_incidence_of_Lyme_borreliosis_babesiosis_bartonellosis_and_granulocytic_ehrlichiosis_in_Australia

Abstract

Borrelia burgdorferi, the causative agent of Lyme disease (LD), and Babesia, Bartonella, and Ehrlichia species (spp.) are recognized tick-borne pathogens in humans worldwide. Using serology and molecular testing, the incidence of these pathogens was investigated in symptomatic patients from Australia. Sera were analyzed by an immunofluorescent antibody assay (IFA) followed by immunoglobulin (Ig)G and IgM Western blot (WB) assays. Both whole blood and sera were analyzed for detection of specific Borrelia spp. DNA using multiplex polymerase chain reaction (PCR) testing. Simultaneously, patients were tested for Babesia microti, Babesia duncani, Anaplasma phagocytophilum, Ehrlichia chaffeensis, and Bartonella henselae infection by IgG and IgM IFA serology, PCR, and fluorescent in situ hybridization (FISH). Most patients reported symptom onset in Australia without recent overseas travel.
  • 28 of 51 (55%) tested positive for LD
  • Of 41 patients tested for tick-borne coinfections, 13 (32%) were positive for Babesia spp
  • nine (22%) were positive for Bartonella spp
  • Twenty-five patients were tested for Ehrlichia spp. and (16%) were positive for Anaplasma phagocytophilum while none were positive for Ehrlichia chaffeensis.
  • Among the 51 patients tested for LD, 21 (41%) had evidence of more than one tick-borne infection.
  • Positive tests for LD, Babesia duncani, Babesia microti, and Bartonella henselae were demonstrated in an individual who had never left the state of Queensland.
  • Positive testing for these pathogens was found in three others whose movements were restricted to the east coast of Australia.

The study identified a much larger tick-borne disease (TBD) burden within the Australian community than hitherto reported. In particular, the first cases of endemic human Babesia and Bartonella disease in Australia with coexisting Borrelia infection are described, thus defining current hidden and unrecognized components of TBD and demonstrating local acquisition in patients who have never been abroad.

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**Comment**

I repost this because “the powers that be” in Australia continue to downplay and deny that Lyme exists in Australia, despite the plethora of suffering patients and many doctors who state otherwise.  (Remember, there are many, many strains of borrelia or Lyme)

Please see this recent article, “Growing evidence of an emerging tick-borne disease that causes a Lyme-like
illness for many Australia patients,” by  Professor Noel. Campbell

It appears Mayne has also been disciplined for his stance on Lyme, like many other LLMDs.

Mayne states he has absolute proof that Lyme is in Australia as tissue samples at the bite sites that he took from two patients were positive for Lyme from DNA analysis.

Category:

Babesia, Bartonella, Ehrlichiosis, Lyme, research, Uncategorized