Archive for the ‘Lyme’ 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

CDC Fails To Acknowledge Neuropsych Symptoms of Lyme & Other TBDs

https://www.lymedisease.org/neuropsych-symptoms-lyme-tbds/

CDC fails to acknowledge neuropsych symptoms of Lyme and other TBDs

Lyme disease and co-infections can bring on a variety of neuropsychiatric symptoms, such as pain, seizures, and cognitive impairment. Yet, patients often find that their doctors don’t understand the connection.

In a recent study, Sarah Maxwell, PhD, and co-authors compared official public health information, case reports, medical literature, and the self-reported symptoms of patients with Lyme and other tick-borne diseases. In the following article, she explains what the researchers found.

By Sarah Maxwell, PhD

Currently, the Centers for Disease Control and Prevention (CDC) does not recognize most neuropsychiatric symptoms of Lyme and other tick-borne diseases. This leaves medical providers with scant information regarding the full extent of possible symptom presentation, to the detriment of patients.

Patients would be better served by improved public health recognition and communication regarding the full spectrum of possible tick-borne disease related symptoms, some of which can be quite frightening, such as hallucinations.

In our recent lead article in Healthcare, we found that neuropsychiatric symptoms are prevalent in the medical literature and among patients’ self-reports, but are not recognized by public health officials, specifically the CDC’s: Tickborne Diseases of the United States: A Reference Manual for Health Care Providers.

In the article, we note that, “The complexity of diagnosis originates from patients presenting with non-specific and multisystem symptoms, with potential misattribution of symptoms by practitioners, regarding psychiatric and associated neurological problems.”

Our mixed-methods approach included a systematic review of the literature on psychiatric and neurological symptoms of tick-borne diseases. We then compared the medical literature to the CDC’s publication: Tickborne Diseases of the United States: A Reference Manual for Health Care Providers.

CDC only recognizes a few neuropsych symptoms

We found that out of all the neuropsychiatric symptoms reported in the medical literature for common tick-borne diseases, only a few were fully recognized by public health officials.

The table below summarizes the symptoms presented in our study. Column one lists symptoms. Column two lists the tick-borne diseases associated with those symptoms in the medical literature. The third column lists the tick-borne diseases that are associated with the symptom, if any, as recognized by the CDC. The final column shows symptoms that are reported in the literature but not recognized by the CDC.

For example, in the medical literature, the symptom, “difficulty with, or slurred speech (dysarthria),” is associated with five tick-borne diseases: Lyme disease, anaplasmosis, ehrlichiosis, Powassan virus disease (PVD), and Rocky Mountain Spotted Fever (RMSF).

However, the CDC does not recognize dysarthria as a symptom of any tick-borne disease, as noted in the fourth column.

Panic attacks and hallucinations are additional examples reported among Lyme disease patients, but also not recognized in public health guidance to physicians.

Make the comparison

Table 1. Symptom comparison from medical literature and the public health reference manual for common tick-borne diseases.

(RMSF—Rocky Mountain spotted fever; BMD—Borrelia miyamotoi diseases;  PVD—Powassan virus disease; TBRF—Tick-borne relapsing fever.)

Symptom Reported in Scientific and Medical Literature Reported by the CDC Reported in the Scientific Literature, but Not Recognized by the CDC
Headache Lyme disease, BMD, babesiosis, ehrlichiosis, tularemia, anaplasmosis, RMSF, and PVD Lyme disease, ehrlichiosis, babesiosis, anaplasmosis, RMSF BMD, PVD, and tularemia None, headache is the most common presenting neurological symptom among all TBDs
Confusion/Altered Mental Status Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, and PVD Confusion: BMD

Altered mental status: ehrlichiosis, babesiosis, RMSF, and PVD

 Lyme disease,

anaplasmosis
Pain Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, tularemia, RMSF, and PVD Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, tularemia, RMSF, and PVD PVD
Seizures Lyme disease, RMSF PVD Lyme disease, RMSF
Vertigo/Dizziness Lyme disease, RMSF None Lyme disease, RMSF
Tingling/Numbness Lyme disease None Lyme disease
Cognitive Function (concentration, memory difficulty, and word recall) Lyme disease None Lyme disease
Paralysis: difficulty swallowing (dysphagia) or Bell’s palsy Bell’s palsy: ehrlichiosis

dysphagia: Lyme disease

 Bell’s palsy: Lyme disease, ehrlichiosis, babesiosis

dysphagia: none

 Dysphagia: Lyme disease
Difficulty with, or slurred speech (Dysarthria) Lyme disease, anaplasmosis, ehrlichiosis, PVD, and RMSF None Lyme disease, anaplasmosis, ehrlichiosis, PVD, RMSF
Low Blood Pressure (hypotension) babesiosis, ehrlichiosis, and anaplasmosis (also present in TBRF) babesiosis ehrlichiosis, anaplasmosis, and TBRF
Fainting (syncope) Lyme disease, babesiosis None Lyme disease, babesiosis
Depression Lyme disease, babesiosis babesiosis, but uncommon Lyme disease
Anxiety Lyme disease (also present in TBRF) None Lyme disease
Fatigue and malaise Lyme disease, ehrlichiosis, anaplasmosis, and babesiosis Lyme disease, ehrlichiosis, anaplasmosis, babesiosis, and tularemia (and other TBDs) None, fatigue and malaise are commonly agreed upon as classic symptoms of TBDs
Mania, panic attacks, delusions, or hallucinations Lyme disease None Lyme disease

We also compared patient self-reported neuropsychiatric symptoms to those recognized by the CDC and the medical literature.

We discovered that patient self-reported symptoms aligned well with the medical case reports, but generally were not recognized by the CDC.

Through an online survey using a convenience sample of patients with self-reported tick bites and concomitant Lyme and other tick-borne diseases, we evaluated patient reports of neuropsychiatric symptoms.

Anxiety, depression, panic attacks

Anxiety, depression, panic attacks, hallucinations, delusions, and pain—ranging from headaches to neck stiffness and arthritis—were common among patients who report a tick-borne disease diagnosis.

Overall, pain and psychiatric symptoms were dominant presentations among survey respondents across all TBD diagnoses, with the majority reporting anxiety, depression, and panic attacks.

Additional reported symptoms also included those not acknowledged by public health officials, including delusions, hallucinations, and Obsessive Compulsive Disorder (OCD).

In contrast, Bell’s palsy, often noted as a classic sign of Lyme disease by public health officials, was reported less frequently by the respondents than psychiatric presentations.

Public health guidance does not align with the medical literature or with patient self-reported symptoms in our study.

We conclude that, “Given the multitude of non-specific patient symptoms this study indicates the need for a revised approach to tick-borne disease diagnosis. Our findings suggest the need for improved awareness of the wide range of associated symptoms and communication from official public health sources regarding tick-borne diseases.”

Click here to read the full article.

Sarah Maxwell, PhD, is an assistant provost and associate professor at the University of Texas at Dallas. Her research and grants focus on tick-borne disease surveillance and patient experiences with Lyme disease. She also serves on the scientific board of the Texas Lyme Alliance.

Category:

Lyme, Psychological Aspects, research

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

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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