Archive for August, 2017

Support Group For Parents of Children With Lyme

https://groups.yahoo.com/neo/groups/lymeparents/info

Group Description

Lymeparents is a virtual meeting place and source for information and emotional support for family members of children with Lyme and other tick-borne diseases. It is sponsored by LymeDisease.org, a leading national patient advocacy nonprofit.

If you are looking for information about children with Lyme disease, here are some links to our website to help you get started:

https://www.lymedisease.org/lyme-basics/lyme-disease/children/

https://www.lymedisease.org/when-your-child-has-lyme-disease/

https://www.lymedisease.org/quick-lyme-intro/

DISCLAIMER: All information posted on this site is the opinion of the author(s) alone and is provided for educational purposes only. It is not to be construed as medical advice regarding the treatment of any symptoms or disease. Obtain medical advice from your physician.

Group Information

Group Settings

  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages are not moderated.
  • All members can post messages.

Category:

Activism, Lyme

Diagnosed with HIV – 14 Year Old Really Had Lyme

https://www.lymedisease.org/lyme-sci-hiv/  Aug. 9, 2017 LymeSci, by Lonnie Marcum

LYME SCI: My daughter tested positive for HIV at age 14

It was a Thursday afternoon, five years ago in August. I remember it like it was yesterday. That sinking feeling in the pit of my stomach. He looked at me and said “I have good news and bad news. The good news is: it’s not cancer. The bad news is: it’s not cancer.”

I froze. What did he mean?

My instincts told me something was terribly wrong with my daughter. She had never been this sick in her life. We knew it wasn’t the flu and all the other typical teenage stuff came back negative.

I’ll never forget the look on her pediatrician’s face. I’d never seen him look so unsure. Not even when she was having trouble breathing at two months old, when he had scooped her from my arms and carried her across the complex and into the hospital where he held her while they took a chest X-ray. He knew then, even before the test came back, what it was—RSV—a virus most children acquire before the age of five.

But not this time. This time was different…

He was very quiet. He could tell by looking at my daughter she wasn’t well. She was pale, having lost most of the summer tan she had gained while playing water polo. Her nail beds were blue. We had asked the nurse to turn the lights down because her head hurt so bad. She gave him a weak smile when he asked how she was feeling.

This was her favorite doctor. The man we had both come to know and love over the past 14 years. I had trusted him with her life on more than one occasion. Normally we would chat, catch up on personal stories. Even when she came in with severe stomach pain two years before, we enjoyed small talk. Smiled. Even laughed.

But not this time.

He sat on the stool beside her. One hand on hers, the other holding her most recent lab results.

“We don’t know what it is. At least if it were cancer we’d know how to treat it,” he said. I looked at him in shock, wondering what in the world he was talking about.

This man. This board-certified pediatrician with a specialty in cardiology, who sees many of the sickest kids in our county, did not know what was wrong with my child. My heart sunk. I felt like panicking. I wanted to cry. I wanted to scream. Instead, I sat there in stunned silence. I was in shock.

How much worse could something be than cancer? I couldn’t wrap my head around what he was saying. I wanted to call my husband. I wanted him with me. But there I was, like so many times before. Just me, my sick child, and this wonderful doctor whom I trusted.

I didn’t want to show my fear in front of her and I could tell the doctor was trying really hard to contain his feelings. Oh, it still hurts to re-live that day. I honestly didn’t think I could feel any worse.

But I was wrong.

In the meantime, my daughter’s fever continued, her white count dropped and a multitude of new symptoms popped up every few days. She wrote about her symptoms here:  http://the-life-of-an-insomniac.blogspot.com/2016/03/my-story.html

Two weeks later, after returning from a full immunology work-up at a large teaching hospital, we were back in the pediatrician’s office. This time I brought my husband.

The moment we walked in, I knew something was wrong. The nurse took us back to the room but lacked her normal cheeriness. “The doctor will be right in,” she said, then closed the door behind her. We waited in anticipation. The minutes ticked by.

When the doctor walked in he was surprised to see my husband. “Did the hospital call you with results?” he asked. I said, “No. They told us you would go over them with us.”

“Well,” he said, “we’ve had a bit of a scare. I’ll wait for you both to sit.” My husband and I both found a chair.

The doctor went on, “Her HIV test came back positive……”

BOOM! I couldn’t hear the rest of what he said.

After my mind stopped screaming ‘WHAAAT!?!” I asked him to repeat what he had said. He explained that her HIV test had come back positive, but he and the specialist reviewed the test and felt the numbers didn’t line up.

I don’t remember the exact sequence of events because I was still in SHOCK! At some point the specialist called the pediatrician and they decided that it was likely an error at the laboratory.

The conversation was kind of a blur. I was so happy that my husband was there to listen. Luckily by the time we left there the pediatrician had assured us the results were negative. We decided to re-run the test just to be sure, and like every parent in this situation—I worried for the next result which did eventually come back negative.

I left the pediatrician’s office that day with no clues as to the source of my child’s illness, a referral to an Infectious Disease specialist, and my motherly instincts telling me to keep searching.

That very bad, horrible August day was just the beginning of a long nightmarish year-long journey to an eventual diagnosis that was not cancer, not HIV, but instead Lyme and two other tick-borne diseases. You can read about our Lyme journey here:  http://tenaciouspt.blogspot.com/2014/11/why-am-i-blogging.html.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org.

Look at the 14 year old today!

 Approx 10 Min Five Facts About Lyme Disease

Here’s her Valedictorian Speech despite being ill with Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2016/06/27/speech-by-valedictorian-with-lyme-disease/

 

 

 

Category:

Activism, Lyme

Pet Owners Have Nearly 2 Times the Risk of Finding Ticks

http://onlinelibrary.wiley.com/doi/10.1111/zph.12369/abstract

Pet ownership increases human risk of encountering ticks

Authors:  E.H. Jones, A.F. Hinckley, S.A. Hook, J.I Meek, B. Backenson, K.J. Kugeler, K.A. Feldman

Zoonoses and Public Health  First published: 19 June 2017

Summary

We examined whether pet ownership increased the risk for tick encounters and tickborne disease among residents of three Lyme disease-endemic states as a nested cohort within a randomized controlled trial. Information about pet ownership, use of tick control for pets, property characteristics, tick encounters and human tickborne disease were captured through surveys, and associations were assessed using univariate and multivariable analyses.

Pet-owning households had 1.83 times the risk (95% CI = 1.53, 2.20) of finding ticks crawling on and 1.49 times the risk (95% CI = 1.20, 1.84) of finding ticks attached to household members compared to households without pets.

This large evaluation of pet ownership, human tick encounters and tickborne diseases shows that pet owners, whether of cats or dogs, are at increased risk of encountering ticks and suggests that pet owners are at an increased risk of developing tickborne disease. Pet owners should be made aware of this risk and be reminded to conduct daily tick checks of all household members, including the pets, and to consult their veterinarian regarding effective tick control products.

For Dr. Cameron’s take on the study:  http://danielcameronmd.com/risk-tick-bite-pet-owners/

Category:

Lyme, research, Ticks

Lyme Disease Case Started With Headaches

HEALTH

Daughter’s Lyme disease started with headaches

Jamie Buss, Rochester (N.Y.)  KHOU11

WEBSTER, N.Y. – Once upon a time, our family was once somewhat casual checking for ticks.

However, as reports of them grew, so, too, did my concerns. Our family camps, and we hike, too.

Weather permitting, we spend as much time as we can outdoors. We’ve pulled ticks off our children and ourselves.

Ironically, though, a tick never was found on my daughter, Ella, who now suffers from chronic Lyme disease.

In early 2015, my now-8-year-old daughter suffered from some pretty debilitating headaches. She spent a good deal of time in the nurse’s office as a result.

We took her to her pediatrician, had her eyes checked and ran some blood work, but miraculously, one day they just stopped on their own.

A year later, she had some new issues involving joint pain. It would come and go, a week or two at a time, but things were never so bad that we had real reason to worry.

Growing pains, we thought. She tweaked her knee at gymnastics, we thought.

All was fine — until one day she couldn’t walk.

For two days, we carried her everywhere because she couldn’t get anywhere on her own. The pediatrician thought she may have juvenile rheumatoid arthritis and scheduled her to see a specialist immediately.

Blood work followed to help pinpoint the cause. Unfortunately, the results came back positive for Lyme disease.

“Not a huge deal,” I thought at the time.

After all, we had a diagnosis, and the doctors were highly optimistic that Ella would make a quick and full recovery. Not knowing anything about Lyme at the time, I had every reason to believe them — until Ella got worse.

Her symptoms went from knee pain to a myriad of other issues:

• She suffered from various types of headaches.
• She had blurred and double vision, insomnia and concentration problems.
• She felt as though needles were in her feet when she walked.
• She had bouts of air hunger, which I liken to an asthma attack, of sorts.
• She had stomach pain and chest pains so severe she could not stand up straight.

The list was long and frightening. But it proved that four weeks of antibiotics weren’t enough to rid her of Lyme and that we were in for a far longer battle.

On the recommendation of fellow Lyme sufferers, we set out to find ourselves a “Lyme-literate” doctor who could help us further. It seemed an easy task.

But not even one Lyme-literate doctor practiced near our Rochester, N.Y., suburb, so we had to travel 4½ hours for an appointment. After more rounds of blood work, tests showed that Ella suffered not only from Lyme, but also two other tick-related diseases, co-infections further complicating her path to recovery.

While I would like to tell you that things have gotten far better, I just can’t. This winter, our second since her official diagnosis, brought on the worst pain she has experienced yet.

After Ella Buss was out of school for several days because of Lyme disease symptoms, her sister, Lucy, wrote her a letter.  (Photo: Courtesy of Buss family)

In a span of a few months, she either arrived to school late, left early or didn’t go at all 40% of the time.

Miraculously, she didn’t fall behind academically but instead was robbed of precious time simply to be a kid. She couldn’t socialize, laugh and play with her peers because she was isolated from so much.

Even when she was able to do more, her pain was a constant, unwanted companion.

Ella has been on several rounds of medications and herbal supplements to combat Lyme and the other diseases she contracted. She’s had more vials of blood taken in the past two years than most people will give in a lifetime.

Her record: 19 vials in one sitting.

I wish I were kidding.

And because of the medical-clinical divide in regard to Lyme disease, insurance covers little to none of her workups and treatment. The disease is debilitating, deflating and downright expensive.

With the warmer weather slowly working its way back to northern New York, my daughter’s pain is starting to subside. She hasn’t missed a day of school since spring break, a feat we celebrate daily.

I wish I could say it’s because she’s being cured, but that’s not likely the case.

Instead, her symptoms are just being held at bay because that’s how Lyme works for many sufferers. The colder the climate, the worse some will feel.

Jamie Buss of Webster, N.Y., has a daughter whose Lyme disease is considered chronic, not curable.   (Photo: Carlos Ortiz, Rochester (N.Y.) Democrat and Chronicle)

In a bit of a Catch-22, the symptoms can diminish in warmer weather, but the presence of ticks is higher as temperatures climb. So you trade one worry for another.

Sharing our story is meant to scare you.

My intention is to raise awareness and advocate on behalf of an ever-growing group of people who suffer like my child does. If one tick is found, or one family helped, then my daughter’s hardships are not for naught.

Please educate yourselves about Lyme disease:

1. Wear long, tight-fitting, light-colored clothing when hiking. Ticks are easier to spot on lighter clothes.

2. Wear long socks when walking through thick grass and wooded areas. Clothing should be changed immediately and washed upon entering your home.

3. Use repellent on skin or clothing to help deter ticks.

4. Know where ticks like to hide on bodies: They prefer dark, moist areas, so check hair, underarms, inner legs, etc. They can be as small as a poppy seed, so be thorough.

5. Know the immediate signs of Lyme disease, but don’t rely too heavily on them. Finding a tick on the skin is an obvious clue, but it’s important to note that ticks or a bull’s-eye rash are found in fewer than half of all Lyme cases.

If you find a tick, use a set of tweezers to pull it upward and out of the skin. Consider sending it to a lab for testing. Find more info at lymedisease.org.

Treatment should happen right away if you find a tick because the earlier the disease is caught, the easier it is to treat. The International Lyme and Associated Diseases Society recommends that antibiotic treatments last for no less than three weeks, many times longer.

Become familiar with signs beyond the obvious. A sudden onset of headaches, unexplained joint pain or fevers should alert you.

Through all of this, the best advice I can give is to trust your instincts.

If a blood test comes back negative, or you aren’t convinced things are going the right way, find an Lyme-literate doctor for a second opinion and get more extensive testing done elsewhere.

You are your best advocate.

Follow Jamie Buss on Twitter: @jamielbuss

Source: Centers for Disease Control and Prevention

Lyme disease by the numbers

• 300,000. New cases nationwide reported each year

• 300. Strains of Lyme disease worldwide

• 100. Strains of Lyme disease in the United States

• 50. Percentage of times a tick or bull’s-eye rash is found

• 35 to 50. Percentage of times common blood tests show a false negative

• 1. Rank of Lyme disease as the fastest growing vector-borne disease in the USA

Source: International Lyme and Associated Diseases Society

**Comment**

Thank you Jamie Buss for this informative but heart-breaking article about your daughter.  As painful as it is, we must share these narratives as the medical community is in the dark ages with all things relating to Tick-borne infections.  Many patients end up diagnosing themselves, a loved one, and even friends and total strangers after understanding the wide array of symptoms in someone else’s case.

For more on Lyme Disease:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2010/08/09/tom-grier-lyme-lecture-outline/

https://madisonarealymesupportgroup.com/2010/08/18/lyme-on-the-brain-part-2-by-tom-grier/

https://madisonarealymesupportgroup.com/2010/08/27/lyme-on-the-brain-by-tom-grier-part-3-a-lecture-notes/

https://madisonarealymesupportgroup.com/2010/08/29/lyme-on-the-brain-by-tom-grier-part-3-b-lecture-notes/

https://madisonarealymesupportgroup.com/2010/08/30/lyme-on-the-brain-by-tom-grier-part-4-lecture-notes/

Category:

Activism, Lyme

Hep B Vaccine Could Increase Heart Attack Risk By 700%

https://www.medpagetoday.com/Blogs/RevolutionandRevelation/67019  by Milton Packer Aug. 2, 2017

The FDA has a really important question and wants your advice.

This is not a fairy tale. This is a real-life story.

Hepatitis B is a serious disease. A company (Dynavax) has a new hepatitis vaccine that induces hepatitis antibodies more vigorously than existing vaccines and does so after 2 doses (instead of the usual 3). The vaccine works through a unique adjuvant. The serological advantages of the Dynavax vaccine were demonstrated in a randomized trial of >8000 patients; about 5600 people received the new vaccine and about 2800 people received the existing standard.

Why does the FDA need your help?

In the trial, an acute myocardial infarction occurred in 14 people in the Dynavax group, but in only one person receiving the conventional vaccine. The events were confirmed by adjudication. Since the Dynavax group was twice as large, the risk of acute myocardial infarction in the trial was seven times greater with the new vaccine. The FDA wants to know if the new vaccine should be approved for use in millions of people.

What do you say? What recommendation would you make?

If you think this is just hypothetical, think again. On July 28, 2017, the FDA convened a public advisory committee meeting to consider this exact question. The members of the committee consisted primarily of experts in infectious diseases and immunology. I was the only cardiologist on the committee.

If the 14:1 imbalance was due to the play of chance, then the issue of myocardial infarction risk was spurious, and the vaccine should be approved. However, if the 14:1 imbalance reflected a real increase in cardiovascular risk, then approval of Dynavax vaccine would be problematic.

Was it biologically plausible for the new vaccine to cause heart attacks?

The new adjuvant in the vaccine caused an inflammatory response (of uncertain duration), and inflammation is an important cause of rupture of atherosclerotic plaques. So a causal linkage was not out of the question.

Was the imbalance in myocardial infarctions due to the play of chance?

That was a good question, but it was impossible to know. Many might think that calculation of a P value would help, but it wouldn’t. P values have a place in clinical trials, but not when the number of events is so small and the number of comparisons is so great. So no one asked for or showed any P values during the meeting. Everyone agreed that statistics could not resolve the uncertainty.

If you wanted to know if the 14:1 imbalance represented a real risk, you needed more information. You needed comparative data in 50,000 people. The fastest way of obtaining that evidence was through a post-marketing trial. But a post-marketing trial was possible only if the vaccine was approved for public use.

So what recommendation would you have made to the FDA?

The FDA asked the committee if there was reasonable evidence that the vaccine was safe. On July 28, the committee vote 12-1 (with 3 abstentions) in favor of the safety of the new vaccine. I was one of the three abstentions. Most of the committee believed that the vaccine’s serological advantages outweighed the uncertainty, but the vote is non-binding. The FDA will decide on the new vaccine by August 10.

Why did I abstain? Based on the available data, it was impossible for anyone to know if the imbalance in myocardial infarctions was real or spurious. So although the question was fascinating and the discussion was terrific, my vote wasn’t that complicated.

There is a simple rule in life: if you don’t know, you should say that you don’t know.

http://www.naturalnews.com/2017-08-11-new-fda-approved-hepatitis-b-vaccine-found-to-increase-heart-attack-risk-by-700.html The stated purpose of a vaccine is to invoke an immune response. The immune response is linked to inflammation, oxidative stress, and immune cell activation. All three are linked to heart attack risk.

Hepatitis B is a viral infection contracted from blood to blood contact. This makes IV drug abusers and people who have sex with multiple partners most vulnerable. HBV is not spread through food or water, sharing eating utensils, breastfeeding, hugging, kissing, hand holding, coughing, or sneezing.

95% of people infected with the Hepatitis B virus do NOT become chronic carriers of the virus. They do not suffer from long-term liver complications, according to the CDC (4). A small percentage develop cirrhosis and/or liver cancer.

https://player.vimeo.com/video/199340171“>

  Wide Awake – Drs. Wolfson  Trailor for full-length cinema seminar on dangers of vaccinations.

https://www.thedrswolfson.com/aluminum-heart-disease/  Aluminum in vaccines stops cellular cleansing and leads to arterial blockages, inhibits crucial anti-oxidant glutathione, could lead to autoimmune diseases.

https://www.youtube.com/user/TheDrsWolfson  Youtubes from cardiologist Dr. Wolfson on everything from Paleo diet to leaky gut, and heart issues (blood thinners, statins, and hypertension).

**Comment**

Since the stated purpose of a vaccine is to invoke an immune response which is linked to inflammation, oxidative stress, and immune cell activation, Lyme/MSIDS patients should contemplate that the pathogen invasion inside of them is already causing enough of those things.

For more on vaccines:  https://madisonarealymesupportgroup.com/2015/06/19/a-word-on-vaccines/

https://madisonarealymesupportgroup.com/2017/03/30/ty-bollinger-the-truth-about-vaccines-series/

https://madisonarealymesupportgroup.com/2017/05/18/first-peer-reviewed-study-of-vaccinated-vs-unvaccinated-children/  The study suggests that fully vaccinated children may be trading the prevention of certain acute illnesses (chicken pox, pertussis) for more chronic illnesses and neurodevelopmental disorders like ADHD and Autism. The scientists also found that children born prematurely, who were vaccinated, were 6.6 times more likely to have a neurodevelopmental disorder.

https://madisonarealymesupportgroup.com/2016/04/24/gardasil-and-bartonella/  There is further damning evidence that Gardasil can produce life-threatening reactions in those who have been close to a cat, fleas, or ticks, since many of these animals are infected with Bartonella, Babesia, or Lyme (borrelia).

Category:

Activism, research, vaccines