Archive for the ‘Activism’ Category

Ticks are Everywhere. Don’t Believe Me? I was Bitten in My Own Bed

https://globallymealliance.org/ticks-are-everywhere-dont-believe-me-i-was-bitten-in-my-own-bed/

Ticks are Everywhere.  Don’t Believe Me? I Was Bitten in My Own Bed

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By Caroline Lewis

Tick prevention was never something that crossed my mind growing up, despite living in Fairfield, Connecticut. I would often go on hikes with my family and friends or walk my dog without a care in the world. I went to summer camp in Maine for eight weeks every summer for six summers, and was never bitten, or even taught about tick-bite prevention.

That all changed on Wednesday, June 26th, 2019. On that morning, I got out of the shower to start my normal post-shower routine. As I was rubbing in lotion on my left arm, I felt a small bump. I looked down to see a black tick attached to my arm. I panicked.  Everything I had read about Lyme disease while working for GLA flooded my mind.

Now how ironic is this? Luckily, the day before I was bitten, I took home from GLA a tick removal tool that we include in our Be Tick AWARE prevention kits, with the intent of giving it to my mom to use on my dog.  Little did I know that I would be using them to extract a tick from myself less than 24 hours later. After carefully removing all of the tick with the tweezers, I placed it into a plastic bag (OK, two bags just to be safe), and brought it to work to show everyone that their newest member of the team had been bitten by the very menace that those of us at GLA fear the most.

In my case, I got this tick bite from simply being in my own home. I did not go outside that day (except to go to work); I did not hike; I did not walk my dog in the woods; I didn’t go near beach grasses; I didn’t roll about in fallen leaves, and so on. I should not have gotten a tick bite, but I did. I came home from work and stayed inside for the rest of the night.

Ticks are everywhere, and that is something you cannot allow yourself to forget.

Back at work I went to my boss and told her what had happened.  Soon, the whole office was invested in my story, with our scientists looking at the tick with a magnifying glass. We concluded that the tick most likely came into my house on my dog and was in my arm for less than 24 hours, since I would have noticed it when I changed my clothes the night before, or I would have seen it on my arm during the day.

I logged onto the GLA website so I could find a lab to test my tick. I ended up choosing UMass Laboratory of Medical Zoology in Amherst, Massachusetts since they offered to test the tick for common tick-borne co-infections as well as the Lyme disease bacterium.  I packed the tick up and sent it off.

The UMass Labs sent me convenient texts and emails whenever they discovered something new about the tick. For example, they updated me on when received my tick.

However, while getting those texts and emails was admittedly great customer service, I grew more anxious waiting for the actual test results.  My mind was swirling with the worst possible fears and I could not relax.  My heart would race every time I thought about the rick results, filling me with anxieties.

Flash forward to Monday, July 1st, 2019: The tick tested positive for the Lyme disease bacterium, Borrelia burgdorferi, but none of its co-infections.  It was a black-legged deer tick in the nymph stage, and it was only partially fed – confirming our guess that the tick was attached to me for less than 24 hours.  This fact calmed me because I remembered reading that it’s typically accepted that that the tick needs to be feeding for at least 24 hours in order to infect a person with Lyme disease.  I’ll be okay, I thought, it was only attached for around 12 hours.

On Friday, July 5th, I was waiting at the DMV when I noticed a small red rash around my tick bite.

Oh no, I thought, there’s no way! I quickly scheduled a doctor’s appointment for later that day. I have a doctor who has seen me since birth, however, she wasn’t available on such short notice. So, I saw another doctor within the same practice.

When I arrived, the doctor did not believe I had been bitten by a tick and questioned me intensely.  She also stated that the rash was less than 5cm, so she did not think it was a tick bite – just an inflamed insect bite. This doctor completely dismissed my tick bite, and even told me that sending a tick out for testing was useless, ultimately crushing my confidence and making me question my certainty. Yes, this happened in Lyme endemic CT.

She sent me home with the words “keep an eye on.”  The whole appointment lasted around five minutes. I started to feel like the majority of Lyme patients out there who see doctors who steadfastly refuse to believe them no matter the iron-clad evidence. I started second guessing myself. What if I’m just allergic to tick bites generally?  What if the lab misidentified the bug in my arm? This caused extreme anxiety all weekend.

When I returned to work that Monday, I felt defeated. I hadn’t looked at my rash that morning, but when I revealed my arm to my coworkers, it was clear that a bulls-eye rash had formed.

My coworkers suggested meeting with my trusted family doctor this time to check out the rash.  Later that day, my family doctor was available, and she took a look at my arm. She gasped and exclaimed that I needed doxycycline immediately.  She even asked if she could show her intern my rash, claiming it was a perfect example of a Lyme bulls-eye rash.

My bull’s eye rash continued to get worse after I started Doxy.  Here are some pictures of the first three days after I started the antibiotics. By now the rash has diminished and is completely gone.

Here are pictures of my bulls-eye from July 9th to July 11th.

I was relieved to get a final diagnosis, I also felt extremely lucky.  Not lucky in the sense that I had contracted Lyme disease, but lucky because I had the bull’s eye rash, which is a classic symptom of Lyme. Many people who’ve been bitten by a tick never recall the tick, or even develop a rash. Lucky, too, that I had a doctor who knew the science and believed in me. Moreover, because I found the tick which had bitten me in a very conspicuous place. Sadly, a lot of Lyme patients aren’t so fortunate.

Looking back, it is almost amusing that in my whole life I was never bitten by a tick until I started working at Global Lyme Alliance. Every time I tell my story, it leaves my friends and family gaping in disbelief.

This experience has given me a small window into what some Lyme patients face, from physical fatigue to physician dismissal – it’s utterly frustrating. Admittedly, my round of horror was relatively brief, and the odds for recovery are in my favor as I started treatment so early. Consider those who are suffering for years and never know what they are suffering from, often because of the lack of understanding by too many physicians and the lack of accurate diagnostics.

My thanks to GLA for providing me with this platform so I could share my Lyme story.  Thanks, too, for providing me with the resources and guidance to help me get through this trying process.

And to those who think you’re immune from a tick bite, think again. I was bit inside of my own house!

Caroline is Global Lyme Alliance’s social media and marketing intern for the summer of 2019.  She is from Fairfield, Connecticut, only one hour away from the birthplace of Lyme disease, Old Lyme, CT.  She is a rising senior at Denison University in Granville, Ohio and she is studying Psychology.

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**Comment**

A great narrative for a number of reasons:

  1. It demonstrates the ignorance of the medical profession regarding Lyme/MSIDS.
  2. It shows ticks are everywhere and due diligence is required for all.
  3. It shows the rash can change. The first doctor should have jumped on this. It is this type of denial that’s destroying lives. The risk of a few weeks of antibiotics pales in comparison to years of heart ache, pain, and expensive treatment.
  4. The words, “wait and see,” regarding Lyme/MSIDS should never be uttered from a doctor’s mouth. Insanity is doing the same thing over and over and expecting different results.
  5. Shame on GLA for not warning this woman that transmission can occur much quicker than 24 hours. This type of mythology has prevailed for far too long and needs to end. Again, with Lyme/MSIDS it’s wisest to err on the side of caution. Her case proves that transmission can and often does occur in under 12 hours:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

 

 

 

 

 

 

 

 

Kris Newby Interview – The Real News Network. Is the Rise in Lyme Disease Due to Weaponized Ticks?

https://therealnews.com/stories/is-the-rise-in-lyme-disease-due-to-weaponized-ticks

Is the Rise in Lyme Disease Due to Weaponized Ticks?

August 5, 2019

Brain Injured Girl in Virginia Diagnosed with ADEM After Flu Shot

https://thevaccinereaction.org/2019/07/brain-injured-girl-in-virginia-diagnosed-with-adem-after-flu-shot/

Brain Injured Girl in Virginia Diagnosed With ADEM After Flu Shot

Brain Injured Girl in Virginia Diagnosed With ADEM After Flu Shot

In 2016, 14-month-old Kynslee Mullins of Spotsylvania County, Virginia was a healthy toddler who was just learning to walk and talk. The child’s health began to deteriorate shortly after receiving the influenza vaccine. One morning, Kynslee awakened “without the use of her entire body,” says her mother, Mary.1

Now nearly four and a half years old, Kynslee is reportedly unable to “sit up or hold up her head, roll over or crawl.” The child is “fed through a tube in her stomach, but spits up often and has so much trouble swallowing that choking is a constant concern.”1

According to a recent article in The Free Lance–Star, the “presumptive diagnosis” of what may have caused Kynsee’s condition is a rare neurological disorder known as Acute Disseminated Encephalomyelitis (ADEM).1

The U.S. National Institute of Neurological Disorders and Stroke (NINDS) describes ADEM as a “brief but widespread attack of inflammation in the brain and spinal cord that damages myelin–the protective covering of nerve fibers” and it says that ADEM “often follows viral or bacterial infections, or less often, vaccination for measles, mumps, or rubella.”1 2

The article in The Free Lance–Star reports that Kynslee’s parents believe that the “flu shot caused the damage.” It notes that the parents do not have “medical reports that connect [the flu shot] to their daughter’s condition.” However, this may be because, according to Kynslee’s father, Dan,

“doctors and nurses typically stop taking notes about Kynslee’s medical history when he mentions the flu shot.”1

The article in The Free Lance–Star quoted Mr. Mullins as saying, “We did it without even knowing this was a possibility. And everybody should know this is a possibility.”1

On Sept. 12, 2018, The Vaccine Reaction reported on the case of 14-year-old Christopher Bunch of Moline, Illinois who died of ADEM on Aug. 14, 2018, three weeks after getting the HPV (human papillomavirus) vaccine Gardasil. ADEM is a reported side effect of Gardasil. It is listed in the Gardasil package insert.3

The development of ADEM has long been associated with infections and vaccinations.45

ADEM has been linked to the influenza vaccine.6 7 8

(photo source: GoFundMe)


References:

1 Dyson C. Spotsylvania family deals with daughter’s life-changing condition. The Free Lance–Star July 29, 2019.
2 U.S. National Institute of Neurological Disorders and Stroke. Acute Disseminated Encephalomyelitis Information Page. NINDS.NIH.gov Mar. 27, 2019.
3Cáceres M. Illinois Teen Dies of ADEM Three Weeks After HPV Vaccination. The Vaccine Reaction Sept. 12, 2018.
4Menge T, Hemmer B, Nessler S et al. Acute disseminated encephalomyelitis: An Update.JAMA Neurology 2005; 62(11): 1673-1680.
5Pellegrino P, Carnovale C, Perrone V et al. Acute Disseminated Encephalomyelitis Onset: Evaluation Based on Vaccine Adverse Events Reporting System. PLOS OneOct. 18, 2013.
6 Alicino C, Infante MT, Gandoglia I, Miolo N, Mancardi GL, Zappettini S, Capello E, Orsi A, Tamburini T, Grandis M. Acute disseminated encephalomyelitis with severe neurological outcomes following virosomal seasonal influenza vaccine. Hum Vaccin Immunother 2014; 10(7): 1969-73.
7 Chahil M, Pillainayagam C, Schulz P. Treatment of Post-Influenza Vaccination Induced Acute Disseminated Encephalomyelitis (ADEM) with Plasma Exchange – A Case Report (P4.036). Neurology 8 Machicado JD, Bhagya-Rao B, Davogustto G, McKelvy BJ. Acute Disseminated Encephalomyelitis following Seasonal Influenza Vaccination in an Elderly Patient. Clin Vaccine Immunol September 2013; 20(9): 1485–1486.

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For more:  https://madisonarealymesupportgroup.com/2018/09/24/more-deaths-after-hpv-vaccination/

https://madisonarealymesupportgroup.com/2016/10/31/paralyzed/

https://madisonarealymesupportgroup.com/2018/10/05/drug-companies-pay-fda-nih-to-fast-track-market-vaccines/

 

A Bold Plan Against Lyme And Other Tick-borne Diseases

https://www.lymedisease.org/keber-ahern/

A bold plan against Lyme and other tick-borne diseases

UK Lyme Disease Cases ‘Three Times Higher Than Estimated’

https://www.medscape.com/viewarticle/916256

UK Lyme Disease Cases ‘Three Times Higher Than Estimated’

Tim Locke

August 01, 2019

Current annual estimates of confirmed Lyme disease cases are between 2000 and 3000 in England and Wales, according to Public Health England.

However, research published in BMJ Open suggests the real figure for the tick-borne disease could be three times higher and may reach more than 8000 this year although an expert has urged caution, saying the findings could be an overestimation.

A second study published in the same journal supported targeted public health intervention at identified Lyme disease hotspots.

General Practice Data

The research team analysed anonymised data from Clinical Practice Research Datalink (CPRD) between 2001 and 2012. This covered around 8.4 million individuals from 658 general practices – around 8% of the UK population.

Lyme disease diagnoses were categorised as

  • Diagnosed clinically (1702, 42%)
  • Suspected and treated (1913, 47%)
  • Possible and treated (468, 11%)

Summers saw the highest number of Lyme disease cases and the largest amount were in Scotland. This was thought to be due to the popularity of hiking, and a rainier climate. The regions coming second and third for Lyme disease incidence were South Central England and South West England, but cases were seen in all areas.

CPRD recorded cases rose from 60 in 2001 to 595 in 2012, and a UK-wide estimate of 7738 for 2012.

Unsurprising Findings

“I wasn’t very surprised, because plenty of people have been suggesting that the incidence is higher than has been estimated,” one of the study authors, retired doctor Victoria Cairns from Oxford told Medscape News UK.

With some diseases, incidence can rise along with public and medical awareness of symptoms. However, “There’s more I think,” Dr Cairns said: “Every year there is more.”

The new research paper doesn’t speculate about the reasons for the growth in cases. “Other people have speculated that it’s climate change, Dr Cairns said. “There are all sorts of explanations. Partly, climate change is warmer. In some places, there are more deer so ticks are feeding off different animals, so that could be part of it.”

She has a personal interest in the subject: “I have had Lyme disease, quite a long time ago.”

She documented it – and post-Lyme disease symptoms – in the International Journal of Epidemiology in 2005.

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For more: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/  Warm winters are lethal to black legged ticks.

https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/