Archive for April, 2019

NY TV Reporter Tells Her Own Lyme Disease Story

https://www.lymedisease.org/new-york-tv-reporter-tells-her-own-lyme-disease-story/

New York TV reporter tells her own Lyme disease story

Nicole Sommavilla

Nicole Sommavilla first started experiencing bizarre, life-threatening symptoms when she was in college.

It took four years to get properly diagnosed and treated for Lyme disease.

Now a reporter with WSYR-TV in Syracuse, New York, she tells her compelling story here.

https://www.localsyr.com/news/local-news/living-with-lyme-newschannel-9-reporter-nicole-sommavilla-opens-up-about-her-health-journey/1914141778

4 Min News Video here of Ms. Sommavilla’s story.  

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**Comment**

Again, we need to keep sharing our stories until authorities listen and change things.  Another great example of a person who NEVER saw the tick or rash.  With all the people I work with – hardly anybody does, yet they make it sound as if it’s a prerequisite.  Please know the percentages seeing the rash very from 27-80% – hardly a sure thing:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/  And in the 1st ever patient group in Lyme, Connecticut, only a quarter had the rash.

Notice how severe this case is.  I assure you there are thousands more just like this that never got the proper diagnosis.

Thank God for doctors WHO USE THEIR GOD-GIVEN BRAINS!

For a wonderful 5-part series by NBC NY on Lyme/MSIDS:

https://madisonarealymesupportgroup.com/2017/10/24/lyme-wars-part-1-julias-story/

https://madisonarealymesupportgroup.com/2017/10/25/lyme-wars-part-2-kyra-overcomes-chronic-lyme-diagnosis/

https://madisonarealymesupportgroup.com/2017/10/26/lyme-wars-part-3/

https://madisonarealymesupportgroup.com/2017/10/27/lyme-wars-part-4/

https://madisonarealymesupportgroup.com/2017/10/28/lyme-wars-part-5-coinfections/

 

Category:

Activism, Lyme

Neuro-Lyme is Like Hitting My Head Against a Fog Wall

https://www.lymedisease.org/starling-fog-wall/

Neuro-Lyme is like hitting my head against a fog wall

Like beating my head against a fog wall

by Julie Starling

It was a warm fall evening in Santa Cruz as my husband and I walked the dogs along the beach. Instead of the usual sunset over the sea’s horizon, a dense wall of fog rolled in, motionless, blocking the setting sun from above.

Gazing at the thick wall of fog felt like home. I had just hit a new downturn in my health, so the strange weather brought a kind of comfort. Mother Nature empathized in a way that nobody else could, as she eased the burden of the bright light on my sensitive eyes.

Sometimes when people ask me about Lyme disease, they immediately jump to the most commonly associated symptom of the disease: joint pain. I suppose because it’s the easiest symptom to notice in a person. I’m glad it eventually ended up in my joints because otherwise I’m not sure I’d have a diagnosis.

Neuro-Lyme symptoms

Of all the symptoms of Lyme disease, the neurological manifestations frighten me the most. Maybe because they are harder to see from the outside. Or because they feel so utterly uncontrollable and cruelly invasive. They are the hardest to stop. The bacteria burrows deep into brain tissue to avoid being killed by medications that can’t cross the blood brain barrier.

It’s so hard to explain to someone else without sounding like you’ve lost your mind. At its worst, neurological Lyme disease can cause paralysis, seizures or schizophrenia. With lesser symptoms, the victim is plagued with insomnia, nightmares, brain fog, word or song iteration, word loss (tip of the tongue) and hypersensitivity to sound, motion, or bright lights.

Those lesser symptoms sound fairly benign, but piled up and never-ending, they can make daily living grueling. Explaining neurological Lyme disease to someone else can feel like hitting my head against a fog wall.

“Oh! I hate when I can’t get a song out of my head,” someone will claim. “I forget words and names, too,” says another. No, no, no.

Extreme earworms

Neurological Lyme symptoms are nothing like typical forgetfulness or song earworms (when a song repeats in your head). It’s the earworm so extreme, so radically incessant, it leads to a vicious cycle of panic and insomnia, especially if you don’t know what’s causing it.

When it first happened to me, it was the unending techno music, which I once listened to while on the stationary trainer. It played in my head 24/7, snowballing into weeks of insomnia, incessant agitation and eventually neurological system shutdown. Today, even on good days when I can listen to music, techno is no longer on my playlist.

Tip-of-the-tongue symptoms in Lyme are also vastly different from occasionally forgetting a word. Instead, it’s a daily struggle with common words. I once literally forgot the word “Alzheimer’s” (you have to laugh at the irony) and substituted the word “preying” when I couldn’t remember “hunting.”

Those are only two out of hundreds of instances over the last eight years. As a writer, this was debilitating. In the beginning, I chalked it up to being daft, not knowing it was the start of long journey leading toward more frequent occurrences.

Neurological Lyme can also make it difficult to comprehend written or spoken words.  When I recently opened up the user manual for a new camera, I could read the words individually, but I couldn’t understand the sentences.

This can really rattle a person, especially if you don’t know why it’s happening. Thankfully by then, I knew what was going on and just put the manual down for another day. Nonetheless, the symptoms both fascinate and scare me. It’s like learning a brand new language. Your neurological system has gone haywire. Nothing makes sense, no matter how hard you try.

Sensitivity to sound and motion

There’s also hypersensitivity to sound and motion. It’s hard to explain to my husband, a music lover, who recently installed wireless amps and speakers in every room in the house and outdoor garden areas, that music sometimes feels like an assault on my brain. It mystifies him, even though he knows I have Lyme disease.

Why can music suddenly make me agitated, unhappy and downright crazy, when he’s always known me to love all kinds of music? For some Lyme patients, loud sounds, music, bright lights or fast motion can trigger seizures. For me, music or action and war movies, can trigger uncontrollable muscle tremors, brain fog, confusion, insomnia, extreme agitation, “brain freeze” pain and even anger—not to mention the earworm from hell.

When I’m in a downturn of Lyme, nothing makes me more furious than a cheerful French song, the twang of a country melody or the pitch of pop music.  My husband gets it as best as he can, but since I’m not having a seizure, it’s hard for him, or anyone else to really understand.

A light in the fog

But there’s a bright light in all this dense fog! Recently I discovered that no matter how bad I feel, I can tolerate soft rock music. I don’t know why, but it doesn’t trigger symptoms. So on my darkest days, if my husband wants music, he must endure Foreigner, Journey, Phil Collins and Brian Adams on Pandora’s soft rock station.

Why beat my head against a wall of fog explaining why he can’t listen to music when soft rock is enough to send the message that I’m feeling extra Lymie that day?

As for everyone else, it’s easier to roll with, “Yah, it’s that joint pain disease.”

***

Julie Starling is a writer in California. You can reach her via her website, www.wilddingo.com. 

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**Comment**

By now all of you are saying, “That’s me!”  If not, consider yourself blessed.

The good news is – TREATMENT will TAKE THIS AWAY or reduce it drastically.  Treatment is everything!  Don’t stay in this place!

I remember spending entire days in a darkened, soundless room, but the hardest part for me – a lover of words – was forgetting them.  I’d walk into a room and forget why I was there.  I’d stand there, scratching my head, desperately trying to retrieve WHY I was there. I’d be in the middle of a conversation and stop because I couldn’t retrieve the word I needed.  Frustrating to say the least.

So very thankful this author wrote about her experience.  It’s through our experiences that we help each other as you can literally feel like you are losing yourself and your mind.

Knowing others have similar experiences remind us we aren’t crazy.

For more:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2019/04/07/missing-links-connect-the-dots-between-lyme-mental-health/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2019/03/26/lyme-its-known-involvement-in-mental-health/

https://madisonarealymesupportgroup.com/2018/12/20/diagnosing-ld-in-children-with-neuropsychiatric-illness/  Make sure to read my comment after the article

 

 

Category:

Activism, Lyme, Psychological Aspects

Eye Problems in Tick-borne Diseases Other Than Lyme

http://danielcameronmd.com/eye-problems-tick-borne-diseases-lyme/

EYE PROBLEMS IN TICK-BORNE DISEASES OTHER THAN LYME

“Why should an ophthalmologist have a good understanding of Lyme diagnosis and treatment?” asks Sathiamoorthi [1], from the Mayo Clinic, in an article published in the Current Opinion in Ophthalmology. “Vision-threatening ophthalmic manifestations are relatively common in Lyme disease (LD) and Rocky Mountain spotted fever.”

by Daniel J. Cameron, MD MPH

“Knowledge of systemic and ophthalmic manifestations combined with an understanding of the epidemiology of disease vectors is crucial for the diagnosis of tick-borne diseases,” she explains.

While manifestations may be present with LD and Rocky Mountain spotted fever, ocular involvement is rare in other tick-borne diseases such as babesiosis, tick-borne relapsing fever, Powassan encephalitis, ehrlichiosis, anaplasmosis, and Colorado tick fever, Sathiamoorthi points out.

However, the true prevalence of ocular involvement due to tick-borne illnesses is unknown. Limitations with testing can make it difficult to identify patients. “It is crucial to know who is appropriate to test in order to avoid false positive results.” If an individual has been symptomatic for only a short period of time, they “may not have detectable serum IgM antibodies to the causative organism because it takes time for this immune response to develop.”

It can also be difficult to determine the cause of the ocular complaints if there is evidence of more than one tick-borne illness.

“One case report [2] describes a patient with optic neuritis and orbital myositis who had serologic evidence of HME [Human Monocytic Ehrlichioisis], Borrelia burgdorferi, and Babesia,” cites Sathiamoorthi.

There are more than one species of ticks associated with ocular findings, as well. According to Sathiamoorthi, those include Ornithodoros genus, Dermacentor variabilis Ambylomma americanum, Ixodes scapularis, and Dermacentor andersonii.

Sathiamoorthi advises doctors to “carefully generate a reasonable differential based on clues in the medical and social history regarding exposures and risks.”

“Patients who are most likely to have ophthalmic Lyme disease,” explains Sathiamoorthi, “are those with ocular manifestations commonly associated with Lyme disease (i.e. Bells palsy, cranial nerve palsies and keratitis); tick exposure in Lyme endemic regions; other signs/symptoms of late Lyme disease (i.e. inflammatory arthritis, carditis, acrodermatitis chronica atrophicans rash, encephalopathy and meningitis); and negative syphilis testing.”

Read more on eye problems in tick-borne diseases in “A growing list of eye problems in Lyme disease.”

References:

1. Sathiamoorthi S, Smith WM. The eye and tick-borne disease in the United States. Curr Opin Ophthalmol. 2016;27(6):530-537.
2. Pendse S, Bilyk JR, Lee MS. The ticking time bomb. Surv Ophthalmol. 2006;51(3):274-279.

 

Category:

Activism, Anaplasmosis, Babesia, Ehrlichiosis, Eye Issues, Rocky Mountain Spotted Fever, Tularemia, Viruses

April – Lyme Prevention Month for Dogs: A Pet Owner’s Guide

https://www.avma.org/public/PetCare/Pages/lyme-disease.aspx

Lyme Disease: A Pet Owner’s Guide

Rolo_Small_250w
Rolo has Lyme disease, but thanks to early diagnosis and regular veterinary care, she lives a happy, healthy life with her family.
Lyme disease (Lyme borreliosis) is an illness that affects both animals and humans – what is known as a zoonotic disease – and is the most commonly reported vector-borne illness in the United States, according to the U.S. Centers for Disease Control and Prevention (CDC). Transmitted through tick bites, the disease can be difficult to detect and can cause serious and recurring health problems. Therefore, it is best to prevent infection by taking appropriate measures to prevent tick bites and, for dogs, possibly vaccinating against the disease.

The bacterium that causes Lyme disease – a worm-like, spiral-shaped bacterium called Borrelia burgdorferi  – is carried and transmitted primarily by the tiny black-legged tick known as the deer tick. Deer ticks are found in forests or grassy, wooded, marshy areas near rivers, lakes or oceans. People or animals may be bitten by deer ticks during outdoor activities such as hiking or camping, or even while spending time in their back yards. 

Named after numerous cases were identified in Lyme, Conn., in 1975, the disease has since been reported in humans and animals across the United States and around the world. Within the U.S., it appears primarily in specific areas including the southern New England states; eastern Mid-Atlantic states; the upper Midwest, particularly Wisconsin and Minnesota; and on the West Coast, particularly northern California. The CDC maintains a map detailing confirmed cases of Lyme disease throughout the years.

Lyme disease is a reportable disease – which  means that health care providers and laboratories that diagnose cases of laboratory-confirmed Lyme disease are required to report those cases to their local or state health departments, which in turn report the cases to the CDC.

How to prevent Lyme disease

The best way to protect pets from Lyme disease is to take preventive measures to reduce the chance of contracting the disease. Even during the last weeks of summer, it’s important to remember that pets and people are at greater risk of being infected with Lyme disease and other tick-borne diseases such as anaplasmosis, ehrlichiosis, or Rocky Mountain Spotted Fever.

People with pets should:

  • Use reliable tick-preventive products. Speak with your veterinarian about what tick preventive product is right for your pet.
  • Work with your veterinarian to decide whether to vaccinate your dog against Lyme disease. Your veterinarian’s advice may depend on where you live, your pet’s lifestyle and overall health, and other factors.
  • When possible, avoid areas where ticks might be found. These include tall grasses, marshes and wooded areas.
  • Check for ticks on both yourself and your animals once indoors.
  • Clear shrubbery next to homes.
  • Keep lawns well maintained.

As noted above, there are preventive Lyme disease vaccines available for dogs, but they aren’t necessarily recommended for every dog. Consult your veterinarian to see if the vaccination makes sense for your pets. If your veterinarian does recommend that your dog be vaccinated against Lyme disease, the typical protocol will involve an initial vaccination followed by a booster 2-4 weeks later and annual boosters after that.

Lyme disease in pets – symptoms and treatment

Pets infected with Lyme disease may not show any signs for 2-5 months. After that time, typical symptoms include:

  • Fever
  • Loss of appetite
  • Lameness
  • Joint swelling
  • Decreased activity

Recurrent lameness also is possible, and the involved extremity may be tender. Inflammation of the joint can last from days to weeks, and may migrate from one extremity to another.

Horses with Lyme disease can develop lameness, joint pain, neurologic disease, eye problems and dermatitis.

Symptomatically, Lyme disease can be difficult to distinguish from anaplasmosis because the signs of the diseases are very similar, and they occur in essentially the same areas of the country. Lyme disease is diagnosed through a blood test that shows whether an animal has been exposed to the bacterium.

Antibiotics usually provide effective treatment for Lyme disease. However, it’s important to follow your veterinarian’s advice regarding follow-up care after your pet has been diagnosed with and treated for the disease.

Lyme disease is not communicable from one animal to another, except through tick bites. However, if you have more than one pet and one is diagnosed with Lyme disease, your veterinarian might recommend testing for any other pets who may have been exposed to ticks at the same time. In fact, because people and their pets often can be found together outdoors as well as indoors, a Lyme disease diagnosis in any family member – whether human or non-human – should serve as a flag that all family members might consult their physicians and veterinarians, who can advise about further evaluation or testing.

It’s a “One Health” problem

Because people and their pets often spend time in the same environments where Lyme and other disease-transmitting ticks are found, the American Veterinary Medical Association (AVMA) and the American Academy of Pediatrics (AAP) are working together to offer advice to households with both children and pets. People who have been diagnosed with Lyme disease should consult their veterinarian to determine their pet’s risk based on the animal’s lifestyle and possible environmental exposures. Likewise, people whose animals have been diagnosed with Lyme disease may want to consult their physician about their own or their children’s risk if they have concerns that the animals and family members might have been exposed to similar environmental risks.
Thousands of cases of Lyme disease have been reported in humans and animals across the United States and around the world. By knowing about Lyme disease and how to prevent it, you can help keep all members of your family — human and animal — safe.

Lyme disease in people

In humans, often the earliest indication of infection is a “bullseye” rash at the site of the tick bite – so named because it resembles a target. As the infection develops, symptoms include fever, headache, fatigue, and muscle and joint pain. The disease can progress to cause chronic joint problems as well as heart and neurological problems. As with pets, Lyme disease is not contagious from one person to another.

There are many things people can do to avoid exposure to tick bites. These include:
  • Avoid areas where ticks are found
  • Cover arms, legs, head and feet when outdoors
  • Wearilight-colored clothing
  • Use insecticides
  • Checking for ticks once indoors.

The American Academy of Pediatrics has more information about Lyme disease in people.

Related information

More from other sources

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**Comment**
  1. Our dog’s case of Lyme disease was picked up on a yearly routine test. He was fine and didn’t show any signs of infection. Our vet insisted that he be treated with over a month’s worth of antibiotics. Meanwhile, my husband spiraled down the vortex of doom for years. No blood test would pick it up. He tested negative on the two-tiered CDC testing. Thankfully, a wise “out of the box” doctor tested him for inflammation which was off the charts high. She said, “The CDC says you don’t have Lyme, I say you do,” and she treated him with two antibiotics – of which he improved immediately. Shortly after, I developed symptoms but also tested negative with CDC testing. By this time, I contacted a Lyme support group and became educated on the polarization within the medical community and had the list of WI LLMD’s in hand. We’ve been in and out of treatment ever since, having spent over $150K out of pocket, but have our lives back.
  2. Throw the CDC maps in the garbage.  This is a pandemic and in every continent but the Antarctica.
  3. Far fewer are getting the EM rash than is touted:  https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/ (read comment as well)
  4. Read up on the Lyme vaccine.  It caused Lyme-like symptoms in people and it’s done that to animals as well: https://www.dogsnaturallymagazine.com/lyme-vaccine-dogs/
  5. While authorities keep saying this can’t be transmitted person to person, Lida Mattman PhD has gone on record saying something entirely different and she studied spirochetes for decades: https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/
  6. There’s more than Lyme to worry about:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/
  7. For more on prevention:   https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

Category:

Activism, Lyme, Ticks

WLN Newsletter – April, 2019

At_a_Glance_Newsletter_4-16-19

Highlights

  • Recap of March WLN Lyme Workshop held in La Crosse. Over 60 from across the state attended!
  • Great article by WLN president Sherry Sievewright on  the importance of addressing microbes in Lyme/MSIDS treatment.
  • WI Lyme Walk for 2019 tabled.
  • Permethrin Pretreated Socks for sale to raise funds for WI doctor education.
  • Upcoming Lyme Awareness Event in Madison:

Mark Jason Lim

 

Category:

Activism, Lyme