Archive for the ‘Activism’ Category

Another Lyme Doc Under Fire

https://www.lymedisease.org/patients-rally-zackrison-virginia/

Patients rally to support Lyme doctor under fire from Virginia Board of Medicine

WLN Jan. Newsletter

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Summary:

  • The Howard Young Foundation has raised $3.2 million of the $3.5 million goal for the Tick-Borne Center of Excellence in Woodruff, WI.
  • The center has seen 54 patients from the midwest & has a waitlist of 178 people.
  • The center is recruiting for a number of research studies.
  • You can purchase permethrin treated socks from WLN.

CDC Website Updated Today: Possibility of Mother to Fetus Transmission Of Lyme Disease

https://www.lymehope.ca/news-and-updates/cdc-website-updated-today-possibility-of-mother-to-fetus-transmission-of-lyme?

CDC Website Updated Today: Possibility of Mother to Fetus Transmission of Lyme Disease

1/31/2020

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The CDC has updated their website today in three different spots to address the very important issue of maternal-fetal transmission of Lyme disease, from an infected mother to her fetus/baby.

The first update is in the Transmissionsection under ‘Are there other ways to get Lyme disease‘  which states:  ​

‘Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare. Fortunately, with appropriate antibiotic treatment, there is no increased risk of adverse birth outcomes. There are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy.’
The second update is in the Lyme Disease FAQ under the question ‘I am pregnant and think I have Lyme disease, what should I do? which states:
‘If you are pregnant and suspect you have contracted Lyme disease, contact your physician immediately.  Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare. Fortunately, with appropriate antibiotic treatment, there is no increased risk of adverse birth outcomes.* There are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy.’* Silver HM. Lyme disease during pregnancy . Infect Dis Clin North Am. 1997 Mar;11(1):93-7.
The third update is to the Pregnancy and Lyme Disease poster.

Clearly addressing the possibility of transmission from an infected mother to her baby is so important and we hope and trust this will open new doors for families who have expressed concern that their children were infected in-utero, so as to access medical treatment, support, follow-up and care.  This update also provides confirmation of the necessity for urgent, dedicated, scientific and medical research, in this area.

It is clear that the issue of maternal-fetal transmission of Lyme disease requires urgent research and a collective, multi-disciplinary, ‘all-hands on deck’ approach to address this alternate mode of transmission.

We are thankful for CDC leadership on this specific issue. Other countries around the world will take note.

It is time that ALL voices are heard, validated and acted upon. We can and must work together for the sake of our children and future generations.

It is also important to note that the HHS Tick-Borne disease working group subcommittee Clinical Aspects of Lyme Disease, recently issued a report which also included a section:
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And, please remember, this is only about Lyme disease.  Most patients are infected with numerous pathogens which the CDC refuses to recognize.  Transmission studies on these pathogens hasn’t been done because they aren’t even considering them.  The effects of being infected with multiple things isn’t even on their radar, let alone being considered as an issue with maternal transmission.
They continue to tell us over and over ad nauseam that all of this is rare.

 

 

 

Doctors Warn Others When Woman Dies After Incorrectly Using Neti Pot

Although this story is 2 years old it’s worth resharing as many patients use the Neti Pot for allergy relief.

https://www.godupdates.com/neti-pot-warning-brain-eating-amoeba/? News Video Here

Doctors Warn Others When Woman Dies After Incorrectly Using Neti Pot

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Lots of allergy and sinus issue sufferers turn to a “nasal irrigation” product called the Neti pot for relief. But doctors say the misuse of this product resulted in a 69-year-old woman’s death.

A 69-year-old Seattle woman sought medical attention after suffering a seizure and from her CT scan, doctors were sure a brain tumor was to blame. But brain surgery revealed something else entirely — a brain-eating amoeba they believe she picked up from a Neti pot.

“Frankly, it was the last thing I had in my mind when I went in to operate on what I thought was a typical brain tumor,” said Dr. Charles Cobbs, a neurosurgeon at Swedish Medical Center.

It wasn’t until Dr. Cobbs sent a sample of the “tumor” away to pathology that the true culprit was found.

“When I operated on this lady, a section of her brain about the size of a golf ball was bloody mush,” Dr. Cobbs explained. “There were these amoeba all over the place just eating brain cells. We didn’t have any clue what was going on, but when we got the actual tissue we could see it was the amoeba.”

The woman carried an amoeba called Balamuthia mandrillaris. This rare organism kills brain cells over time, so by the time the doctors caught it, it was too late. The woman died just a few weeks after her diagnosis.

Tainted Neti Pot Water Is Suspected Cause

After sharing the diagnosis with the Seattle woman, she told doctors about regularly using a Neti pot to flush her sinuses. The problem is that she was filling the device with tap water. She thought filtering the tap water through a Brita water purifier would be enough. But it wasn’t

“It’s extremely important to use sterile saline or sterile water. I think she was using water that had been through a water filter and had been doing that for about a year previously,” Dr. Cobb said.

This woman’s case is clearly an extreme case. But there’s a reason the Neti pot packaging includes the warning, “Do not use with tap water.”

Using anything other than sterile water or sterile saline presents the risk of infection.

“I believe it actually got in the bloodstream and somehow ended up in the brain,” Dr. Cobb said.

Sadly, it’s too late to save the woman from Seattle. But the doctors are getting her story out there in the hopes of saving others. Doctors insist people should always follow instructions and take precautions when using medical devices.

Please be sure to share this story to keep others from making the same mistake!

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**Comment**

Another trick is to:

  • take a warm bowl full of sterile water
  • put a pinch of sea salt in
  • stir it
  • put your face into the water and breath in through your nose like a straw, keeping your mouth shut

This will force water up into the sinuses even better due to the force you use.  You then just spit the water out.  I know people who use this daily for allergies with great success.  It essentially flushes the sinuses out, but again, use sterile water & a reputable brand of sea salt.

Tony Evers Signs Two Lyme Bills

https://www.lymedisease.org/wisconsin-two-lyme-bills/

Wisconsin governor signs two Lyme bills related to state parks