Helping Our Child Through Lyme Disease Shouldn’t Be This Hard

September 6, 2020

https://www.lymedisease.org/jessica-egan-child-lyme-hard/

Helping our child through Lyme disease shouldn’t be this hard

August 24, 2020

jessica egan

By Jessica Egan

Our 11-year-old daughter Lucy had three tick-borne diseases starting in 2018: Lyme disease, babesiosis, and mycoplasma pneumonia.

We don’t know when or where she was bitten by the tick, but we have an educated guess. What we know for sure is that it took months to get a diagnosis, doctors didn’t listen to us or to her, and all the while she kept getting sicker.

We spent that summer in Massachusetts, never seeing a tick on Lucy or any indication of a tick bite. We returned to California in September, completely unaware that our daughter had contracted Lyme along with two co-infections.

Mysterious symptoms

Then, in October, Lucy had what seemed like the flu — it was uneventful and short-lived. She also had some itchy bumps on her lower back that looked like bug bites. We investigated her room and her bed–and found nothing.

In December, she started complaining of being tired. We dismissed that as the culmination of a busy first term at school

By January 2019, Lucy was too tired to continue her weekly swim lessons.

By mid-February, Lucy’s exhaustion forced her to miss a week of school. She was not otherwise sick — no fever, cough, or congestion—and her appetite was normal. She was just completely wiped out and couldn’t get out of bed, so we went to see our pediatrician.

I recounted her earlier bouts of flu and fatigue and mentioned Lyme disease. However, the pediatrician dismissed that idea and instead blamed poor sleep quality, urging her to get to bed earlier.

In March, Lucy complained that she had trouble hearing in one ear. We brought her back to our pediatrician, where she scored very low on the hearing test. We made an appointment with an audiologist. After two exams, the audiologist told us in so many words that Lucy was making it up and suggested that there might be “something going on at home.” We felt we were dismissed quickly and rushed out the door.

Next came ringing in one of Lucy’s ears. We again went to see our pediatrician, and subsequently an ENT. After reviewing the audiology report and performing an exam, the ENT said that she didn’t see anything that would cause ringing in the ear, She told Lucy to keep a journal documenting the ear ringing, and report back in three months. I again asked about Lyme disease. She dismissed the idea.

“No Lyme in California”

By mid-April, with no improvement in any of Lucy’s symptoms, we asked our pediatrician for a Lyme test. She said it would have been nearly impossible for Lucy to contract Lyme disease in California (which is incorrect), plus we had never seen a bull’s-eye rash, nor did Lucy have joint pain. We persisted, reminding the doctor that we spend our summers on the East Coast. Finally, reluctantly, she agreed

When the blood test results came back, our pediatrician called us and said,

“Great news, Lucy’s blood work looks fine and she doesn’t have Lyme disease.”

This did not seem right to us, but we believed the test results because we did not know at the time how inadequate that lab test is. The pediatrician concluded that mental health issues were causing Lucy’s physical symptoms, and that she should see a therapist.

On Mother’s Day, Lucy came down with a high fever and was overwhelmingly exhausted. We saw our pediatrician immediately. In a perfunctory visit, she tested for strep (which was negative) and concluded it was the flu. She told us to come back if Lucy’s fever didn’t break within a couple of days. When nothing changed, we went back to the doctor. This time, she tested for flu (which was negative) and ordered a chest x-ray. The x-ray showed that Lucy had pneumonia, and the pediatrician started her on an antibiotic.

After several days on the antibiotic, Lucy’s condition did not improve. At this point, frustrated with the lack of progress with our pediatrician, we visited a naturopathic doctor (naturopath) whom I had seen previously.

Exploring another approach

For those unfamiliar, naturopathic doctors take a different approach to diagnosis and treatment than MDs. Naturopaths complete at least four years of medical training. Their coursework includes rigorous instruction in pharmaceuticals, nutrition, psychology, herbal medicines, homeopathy, and a variety of alternative treatments. They use a broad arsenal to treat health issues, including advising on how lifestyle choices impact health. Put simply, they take a holistic approach. This turned out to be the right person to puzzle out what was ailing Lucy.

We recounted the entire story to the naturopath, and she asked Lucy many questions. She took copious notes and circled back and probed deeper into some of Lucy’s answers, asking follow-up questions that at the time seemed unrelated. She then said,

“I think Lucy has Lyme disease and mycoplasma pneumonia. I’d also like to get her tested for babesiosis because I think she may have that, too.”

Many doctors over the course of several months had failed to arrive at this diagnosis. In fact, even when we suggested it, those doctors wouldn’t consider it as a possibility. Our naturopath raised the issue after a one-hour consultation.

The naturopath explained that the simple blood test ordered by the pediatrician is insufficient to diagnose Lyme disease. She also told us that the antibiotic our pediatrician had prescribed was not effective against mycoplasma pneumonia, which is why Lucy wasn’t improving.

She instructed us to get Lucy tested for Lyme disease and babesiosis through a laboratory that specializes in testing for tick-borne diseases. Lucy’s new lab results for Lyme disease were borderline, but Babesia bacteria showed up very clearly. In addition, a separate test through a different lab came back overwhelmingly positive for mycoplasma pneumoniae.

Ten months after the tick bite

In light of the test results and the symptoms, our naturopath concluded that Lucy had Lyme, babesiosis and mycoplasma pneumonia. This was May 2019, seven months after she first showed flu-like symptoms, four months after she first saw a doctor, and 10 months after the tick bite (based on our best guess).

Our naturopath prescribed various antibiotics, medications and herbal supplements, which helped Lucy clear her immune system relatively quickly. Doxycycline, atovaquone and azithromycin were the heavy hitters. Each one comes with its own set of instructions about when they can be taken and with which foods, plus the added hassle of doxycycline causing skin photosensitivity (and this was summertime).

The various supplements helped with vitamin deficiencies and immune boosting, as well as calming a nauseous stomach and sleeping better at night. Per our naturopath’s suggestion, we also checked in with a Lyme-literate MD, who confirmed her diagnosis and treatment plan.

After six months of treatment, Lucy’s health had substantially improved. She continues to do well.

Lucy is in a good place now, but only because we left our pediatrician and sought a second opinion. We were way outside of our comfort zone when we decided to consult the naturopath. But we knew that the various doctors we had seen over the few month period had somehow missed the full picture.

Missing the big picture of Lyme disease

There are many reasons that doctors miss the diagnosis of Lyme disease. Some of them rely on supposedly “classic” symptoms of Lyme, such as a bull’s-eye rash and joint pain. Furthermore, the CDC-endorsed two-tier testing protocol for Lyme disease is highly unreliable. This is precisely why doctors need to listen to their patients and use common sense to evaluate symptoms.

Lyme disease is not going away. Far from it—it continues to spread. Much more research is needed about testing, symptoms, antibody production and treatment. It’s why further education and training is needed for doctors across the country.

In short, we need more doctors who know how to diagnose and treat Lyme and other tick-borne diseases. More doctors that know about different kinds of testing, and that some of the symptoms they think of as “classic” markers in fact don’t show up in most patients.  Above all, we need doctors who will take the time to listen to their patients, and do follow up research if necessary.

We felt all along that our doctors were in too much of a rush to get us out the door. Lucy’s symptoms did not neatly fit into their check list, so they dismissed our concern that she had Lyme disease. Instead, they fell back on a “mental health” diagnosis.

This says just as much about the state of our health care system and how doctors are trained as it does about the particular physicians we saw.  Our health care system needs an overhaul. Both doctors and patients deserve better.

Jessica Egan lives in the San Francisco Bay Area. This guest blog was adapted from A Call for More Lyme-literate Doctors.

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**Comment**

Parents shouldn’t have this much trouble getting their children help but this is the norm for tick-borne illness.  I posted this is 2017 and nothing’s changed:  https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

Doctors keep falling back on the old, “it’s all in your head,” tactic.

The overwhelming exhaustion is one clue and is a hallmark symptom of tick-borne illness.  This is fatigue so severe you can literally fall asleep standing up.  This article has some helpful information on symptoms many are unaware of:  https://madisonarealymesupportgroup.com/2015/09/16/bizarre-symptoms-msids/  Tinnitus, or ringing in the ears is listed.

What is unconscionable is the doctors’ refusal to even check for Lyme.  Running a test just isn’t that hard. Then, if it returns negative doctors should ethically educate patients that these tests are poor at best and there’s a chance the person is infected despite a negative test result.  This should be standard practice – knowing the facts.

They should also be educating patients that Lyme is only the tip of the spear and there are many other pathogens that could be involved.

Notice that the NP utilized specialized testing and prescribed various antibiotics, medications and herbal supplements.  This is what good treatment looks like – if the patient is able to handle it all at once (some have to work into it).  Everyone’s different but appropriate treatment is typically layered and uses multiple things simultaneously.  For more on Lyme treatment:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

Our ‘authorities’ have maligned these specialized labs for decades. This is because the CDC has patents on treatments, test kits, and vaccines and actively competes with the private sector and then turns around and controls public health: https://madisonarealymesupportgroup.com/2020/04/26/cdc-playbook-learning-from-lyme/  It’s literally the fox guarding the hen-house.  Needless to say, these people are NOT to be trusted.

 

 

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Might SARS-CoV-2 Have Arisen Via Serial Passage Through an Animal Host or Cell Culture?

September 5, 2020

https://onlinelibrary.wiley.com/doi/10.1002/bies.202000091

BioEssays

Problems & paradigms  Free Access

Might SARS‐CoV‐2 Have Arisen via Serial Passage through an Animal Host or Cell Culture?

A potential explanation for much of the novel coronavirus’ distinctive genome

Karl SirotkinDan SirotkinFirst published: 12 August 2020 https://doi.org/10.1002/bies.20200009

Abstract

Despite claims from prominent scientists that SARS‐CoV‐2 indubitably emerged naturally, the etiology of this novel coronavirus remains a pressing and open question: Without knowing the true nature of a disease, it is impossible for clinicians to appropriately shape their care, for policy‐makers to correctly gauge the nature and extent of the threat, and for the public to appropriately modify their behavior. Unless the intermediate host necessary for completing a natural zoonotic jump is identified, the dual‐use gain‐of‐function research practice of viral serial passage should be considered a viable route by which the novel coronavirus arose. The practice of serial passage mimics a natural zoonotic jump, and offers explanations for SARS‐CoV‐2’s distinctive spike‐protein region and its unexpectedly high affinity for angiotensin converting enzyme (ACE2), as well as the notable polybasic furin cleavage site within it. Additional molecular clues raise further questions, all of which warrant full investigation into the novel coronavirus’s origins and a re‐examination of the risks and rewards of dual‐use gain‐of‐function research.

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**Comment**

Serial Passage is another way of saying “tinkered with in a lab setting.” 

Excerpt from paper:

The long‐standing practice of serial passage is a form of gain‐of‐function research that forces zoonosis between species, and requires the same molecular adaptations necessary for a natural zoonotic jump to occur within a laboratory, leaving the same genetic signatures behind as a natural jump but occurring in a much shorter period of time.

The paper points out that ‘serial passage’ is often used for vaccine programs.

The paper also admits: 

The dual‐use gain‐of‐function research tool of serial passage was first applied to a strain of H1N1 Swine Flu, a variant of the pandemic influenza virus that was genetically modified before it either leaked out of a Soviet lab or was introduced as part of an attenuated vaccine trial in 1977. Although no one has ever taken responsibility for the introduction of this virus, it would become the first known example of a virus created by serial passage leaving a lab, which was later determined due to its inexplicable genetic distance from any known sister strain.[8]

Please refresh your memory on the H1N1 fiasco:  https://madisonarealymesupportgroup.com/2020/08/22/the-2009-swine-flu-scam-murderous-anthony-fauci-betrays-public-trust-again/ (It’s all very similar to COVID-19)

This genetic engineering happened right here in my home state by Dr. Yoshihiro Kawaoka of the Universities of Tokyo and Wisconsin using:

“genetic engineering to combine genes from the H1N1 Swine Flu as well as the H5N1 Bird Flu to create a chimeric virus that was then serially passed through ferrets, creating another airborne virus with potentially pandemic properties.[12] Both experiments created a modified genome that appeared to be the result of natural, albeit accelerated, selection since the process of serial passage forces the mutations selected for in natural zoonotic jumps, and masks the direct genetic engineering done on the viruses. These experiments were viewed by many as being sufficiently dangerous that they should not be published,[13] however they were both eventually released with certain methodological and sequence details left out.”

This is discussed here by Dr Luc Montagnier:  https://madisonarealymesupportgroup.com/2020/06/11/nobel-prize-winner-on-the-coronavirus/

Excerpt:

He, along with numerous other scientists, states the virus (COVID-19) has been manipulated and that components of HIV have been inserted into the viral sequence, perhaps in pursuit of an AIDS vaccine.

He mentions that the U.S. funded the Wuhan lab in China:  https://madisonarealymesupportgroup.com/2020/04/14/wuhan-lab-got-3-7-million-from-u-s-government/  Dr. Fauci, head of NIAID and part of the coronavirus task force, is the one who sent U.S. tax payer money to China after a moratorium was given to stop this sort of research. That is called breaking the law and he should be in jail.

Lastly,

And whether or not gain‐of‐function research is determined to have played a role in SARS‐CoV‐2’s emergence, the fact that it creates opportunities for pandemic viruses to leak out of labs calls for a re‐examination of the moratorium against this practice, because the emergence of this novel coronavirus has demonstrated that the international public health community is not prepared to handle the leak of a pandemic virus. Furthermore, none of the gain‐of‐function research conducted since 2014 has provided humanity with any tools at all to fight back against the ongoing pandemic caused by this novel coronavirus.

Please considering signing the petition to stop ‘gain of function’ research:  Sign petition here:  https://www.change.org/p/national-institutes-of-health-reinstate-the-global-moratorium-on-gain-of-function-research

 

 

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A Supercomputer’s COVID-19 Analysis Yields a New Way to Understand the Virus

https://elemental.medium.com/a-supercomputer-analyzed-covid-19-and-an-interesting-new-theory-has-emerged-

A Supercomputer Analyzed Covid-19 — and an Interesting New Theory Has Emerged

A closer look at the Bradykinin hypothesis

Thomas Smith

Earlier this summer, the Summit supercomputer at Oak Ridge National Lab in Tennessee set about crunching data on more than 40,000 genes from 17,000 genetic samples in an effort to better understand Covid-19. Summit is the second-fastest computer in the world, but the process — which involved analyzing 2.5 billion genetic combinations — still took more than a week.

When Summit was done, researchers analyzed the results. It was, in the words of Dr. Daniel Jacobson, lead researcher and chief scientist for computational systems biology at Oak Ridge, a “eureka moment.” The computer had revealed a new theory about how Covid-19 impacts the body: the bradykinin hypothesis. The hypothesis provides a model that explains many aspects of Covid-19, including some of its most bizarre symptoms. It also suggests 10-plus potential treatments, many of which are already FDA approved. Jacobson’s group published their results in a paper in the journal eLife in early July.

According to the team’s findings, a Covid-19 infection generally begins when the virus enters the body through ACE2 receptors in the nose, (The receptors, which the virus is known to target, are abundant there.) The virus then proceeds through the body, entering cells in other places where ACE2 is also present: the intestines, kidneys, and heart. This likely accounts for at least some of the disease’s cardiac and GI symptoms. (See link for article)

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**Comment**

If true, this would explain the varied and bizarre symptoms many can experience.

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Be Aware: Tick Bites Can Cause Lyme Disease, Says Survivor

https://www.connexionfrance.com/index.php/French-news/Health/Be-aware-tick-bites-can-cause-Lyme-disease-says-survivor

Be aware: tick bites can cause Lyme disease, says survivor

Connexion reader Margaret Alderson, 76, says everyone should be aware of tick bites and how they can carry Lyme disease, which is extremely debilitating and often goes undiagnosed – as happened to her.

4 September 2020Connexion reader Margaret Alderson and her husband John in a garden.Margaret Alderson shares her struggle with Lyme disease. By Connexion Journalist

Lyme disease in France: Margaret’s story

After retiring from her job co-ordinating the Erasmus scheme for Middlesex University, she moved to Segonzac in the Dordogne with her husband John, from Ware, Hertfordshire in 2005. She was in excellent health until two years ago when in August 2018, she suddenly fell ill.

“I had dreadful pains in my chest and arm,” she said.

“I thought I was having a heart attack or a stroke. An ECG and blood test at my local A&E revealed that was not the case and I recovered with hefty painkillers. A month later, it happened again but was much worse. My hands would not work and I could hardly walk. Another ECG test showed there were no heart problems. I then saw a neurologist who diagnosed trapped nerves in my elbows and a scoliosis specialist who thought it was a back problem. He wanted to give me a major operation to put rods in my spine.”  (See link for article)

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**Comment**

Sigh…..

40 years and this is where we are still at.

After using this poor woman’s experience, they tout the upcoming Valneva Lyme vaccine.  Please read this article about concerns:  https://madisonarealymesupportgroup.com/2018/12/18/concerns-about-valneva-vla15-lyme-vaccine-trials/

Excerpt:

The OspA based LYMErix vaccine was problematic with 1000+ adverse reactions and ongoing severe complications. According to the US government, the LYMErix vaccine had many health risks and was quite ineffective. Nevertheless, the biotech company Valneva appears to be using a similar OspA-based technology for their VLA15 Lyme vaccine.

So there you have it.  Lyme patients have waited patiently for over 40 years for basically ZERO help from mainstream medicine.  You still need to be tested by CLIA certified labs that are outside mainstream testing AND you still need to see specially trained ILADS (Lyme literate) doctors if you want to regain your health.  Both of these endeavors are typically going to cost patients ‘out of pocket.’ There is very little help or hope from mainstream medicine.  BTW: this type of testing and treatment are maligned by ‘authorities’.  

The deck is stacked and appears to remain stacked against the ever-growing number of infected.
Little has changed in Lyme-land.

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UCLA Study Finds For Average 50-64 Year Old, Chances of Dying From COVID-19 Are 1 in 19.1 Million

http://

Sept. 4, 2020

One America News Network

A new study from medical researchers at UCLA and Stanford University found the chances of contracting or dying from coronavirus are much lower than previously thought. One America’s Pearson Sharp has the details.

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**Comment**

The UCLA/Stanford study: https://www.medrxiv.org/content/10.1101/2020.06.06.20124446v2 (This is a pre-print and it has not been peer-reviewed)

Another article about the study showing graphs, etc.: https://www.dailymail.co.uk/health/article-8451823/Americans-OVERESTIMATING-risk-getting-coronavirus-claims-California-study.

Excerpts:

‘We get these really large counts of deaths, and very large counts of cases, and they all seem to be growing, but what does that matter to me is not really answered by those questions.’  

‘Even at [the pandemic’s] peak, except for very few places, the severe events were pretty rare events.  

‘The perception given all of the data and the images and the emergencies, the war metaphors, the uncertainty, the lack of control, these were all factors that I think elevated the perception of risk.  Dr Rajiv Bhatia

For more: https://madisonarealymesupportgroup.com/2020/09/04/covid-19-fatality-rate-worst-miscalculation-in-the-history-of-humanity-says-phd-candidate-in-epidemiology/

https://madisonarealymesupportgroup.com/2020/07/21/covid-19-have-you-heard-there-is-good-news/

https://madisonarealymesupportgroup.com/2020/08/15/the-continuing-saga-of-muddled-covid-19-case-number-miscounts-that-are-being-used-to-take-away-your-freedoms/

https://madisonarealymesupportgroup.com/2020/08/31/cdc-quietly-updates-numbers-showing-only-9210-americans-died-from-covid-19-alone-the-rest-had-other-serious-illnesses/

https://madisonarealymesupportgroup.com/2020/08/01/lockdown-lunacy-3-0-its-over/

 

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