Archive for the ‘Uncategorized’ Category

Conservatorships Can Trap Families in a Web of Conflicting Interests

https://www.lymedisease.org/conservatorships-can-trap-families/

Conservatorships can trap families in a web of conflicting interests

Aug. 31, 2022

By Dorothy Kupcha Leland

Deborah Findley’s son, Andrew, grew up with serious health problems, including autism, Lyme disease, and other conditions. Now 21, he is severely disabled and requires 24-hour care.

When he turned 18, his mother was advised to seek a conservatorship for him. That’s a way for someone to assume legal guardianship over an adult incapable of caring for themselves. Being his conservator would allow her to make medical decisions on his behalf, along with other choices regarding his care.

But when she and her husband petitioned the court to become Andrew’s conservators, they got a nasty surprise.

California’s Department of Developmental Services filed a competing petition. The department said that DDS should be Andrew’s conservator because of alleged abuse by his parents. The judge followed the agency’s recommendation and Andrew’s parents were shut out of his care.

As a result, they have been unable to visit Andrew in person for over three years, sometimes not even knowing where he was located.

There appears to be no legal avenue to challenge the court’s decision. Deborah says she has spent over $300,000 in legal fees fighting the state’s court-ordered conservatorship, trying to get access to her son. So far, she’s had no luck.

The issue of conservatorship is a complex one. You may remember news reports about pop star Brittany Spears and her years-long fight to regain control of her finances and personal life. A judge finally ended her 13-year conservatorship in 2021.

Investigative reporter Andie Judson, of ABC10 TV in Sacramento, examines Andrew’s case in a multi-part news series on conservatorship called “The Price of Care.” It is a complicated story with chilling implications.

Click below to watch the episode featuring Deborah and Andrew’s story.

This segment is part of Season 2 of Judson’s “Price of Care” series. Season 1 included five episodes that ran in 2021. Click here for more information about the whole series.TOUCHED BY LYME is written by Dorothy Kupcha Leland, Board President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

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**Comment**

This is not the first time parents have been accused of child abuse of a child infected with Lyme/MSIDS, or the first time Child Protective Services (CPS) has medically kidnapped children.  Also, the COVID debacle has allowed hospitals to medically kidnap people.

  • Hospitalized patients are forced on to the “Fauci death protocol” against their will, often resulting in death, and due to the infamous Cares Act, hospitals are given bonus incentive payments for all things related to COVID-19 (testing, diagnosing, admitting to hospital, use of remdesivir and ventilators, reporting COVID-19 deaths, and vaccinations) and waivers of customary and long-standing patient rights by the Centers for Medicare and Medicaid Services (CMS) and are the reasons patients are virtual prisoners in the hospital with ZERO rights.  They have no choice, no say, and are barbarically isolated from family members. They are only allowed “FDA approved” COVID treatments which are dangerous, ineffective, and expensive – all because our corrupt government is in bed with Big Pharma.
Due to the politicization of tick-borne illness, parents fight an uphill battle.

Category:

Activism, Lyme, Uncategorized

Lyme Testing, Blood work, and Diagnoses

https://www.globallymealliance.org/blog/lymewarrior

Dear Lyme Warrior…Help! Lyme Diagnoses, Testing, and Blood work.

by Jennifer Crystal on August 12, 2022

<img src="https://www.globallymealliance.org/hubfs/blog_Lyme-Warrior-Q-A_Jennifer-Crystal_3-Apr-27-2021-09-10-21-42-PM%20%282%29.webp&quot; alt="Dear Lyme Warrior…Help! Lyme Diagnoses, Testing, and Bloodwork.“>
Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.
How were you finally diagnosed with Lyme disease?

People ask me this question all the time, especially when their own lab work comes back negative or equivocal, but they have symptoms of Lyme disease or remember a tick bite. Here’s an important fact that not everyone—including some doctors—knows: per the CDC, Lyme disease is a clinical diagnosis. That means that it is up to your doctor to determine, based on your symptoms and on factors such as whether you had a tick bite or whether you spent time in an area where Lyme is common, whether you have Lyme disease or not. That clinical diagnosis can be supported by lab tests, but tests alone cannot definitively say whether you do or don’t have Lyme disease.

That last part bears repeating: tests alone cannot definitively say whether you do or don’t have Lyme disease. This is because Lyme tests only look for antibodies against the bacteria that causes Lyme disease, not for the bacteria itself. Testing for Lyme disease is faulty for a number of reasons, including the fact that standard CDC tests only looks for a very narrow set of bands of antibodies—so narrow, in fact, that those tests were not actually designed for diagnostic purposes, even though they are used as such. You can use other labs that look for a wider range of bands (for more information, see GLA’s Lyme Disease Testing page), which can give your doctor a better read than standard tests. At the end of the day, though, the diagnosis is still up to your doctor.

I was clinically diagnosed by a Lyme Literate Medical Doctor (LLMD), and I was lucky enough to also have a CDC-positive lab test. I also tested positive for the co-infections babesiosis and ehrlichiosis, and my doctor suspects that I also had Bartonella. If you had a standard Lyme test come back negative but have reason to believe you do in fact have Lyme disease, see a LLMD. They will make a clinical assessment, likely do the more specialized tests, and probably do tests of certain biomarkers that may help them figure out if you have Lyme disease.

Can tests show that your Lyme disease is gone or in remission?

Unfortunately, no. If you’ve had Lyme disease, your long-term antibodies (IgG) will likely continue to show up whether your infection is active or not. Antibodies of acute Lyme infection (IgM) could mean your old infection is still active, or they could mean you have a new infection. As a result, most doctors do not use tests to determine whether your Lyme infection is cleared or dormant; they go by clinical symptoms. Other biomarker tests, like inflammatory markers and immune markers, can help them determine how active your infection is, but currently there is no direct test to determine where your Lyme infection stands.

Is it important to get other blood work done while you’re being treated for tick-borne illness?

Absolutely. Even though tests can’t reliably tell you whether you have Lyme disease or how active the infection is, it’s really important that your doctor does regular blood work ups to determine how your tick-borne infections, and your treatment for them, are impacting your body. You may get depleted of certain nutrients, your inflammatory markers could be high, or you might show anemia. I get a complete blood count (CBC) and comprehensive metabolic panel (CMP) every two months; when I was acutely ill and on intravenous antibiotics, I had my blood drawn every week. My doctor also does specific tests for markers that have been off for me in the past (for example, my ferritin levels were recently low, so I needed to take an iron supplement for a little while).

It’s also important to check for other health issues that may be going on in addition to tick-borne illness. When we’re in the midst of battle with these illnesses, it can be easy to forget the bigger picture, but you need to keep up with other regular health exams, too. A few years ago, I had a mammogram that showed a lump that required surgery. Thankfully, everything was benign, but if I’d skipped the mammogram to focus only on tick-borne illness, I might not have caught the lump in time. Make sure to keep up not just with regular blood work but also with annual health appointments, like the eye doctor and the dentist, as well.

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. 
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

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For more:

Category:

Lyme, Testing, Uncategorized

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