My #1 Headache Trigger? Lyme Disease

March 26, 2020

https://globallymealliance.org/my-1-headache-trigger-lyme-disease/

Listen to the audio version of this blog below:

Skiing has always been part of my life. I went to a college in Vermont that had its own ski run. After graduation, I moved to Colorado to teach high school, and to become a ski instructor. It was supposed to be the high point of my life, and in many ways it was, but there were also some very low points because I was wrestling with undiagnosed tick-borne illnesses.

One such low found me on the bathroom floor, writhing in pain from an excruciating migraine. The throbbing started over my left eye, working its way up over that side of my head and around the back to my neck. I felt as if my brain was going to explode out of my skull.

“It’s probably from the altitude,” a doctor later told me. In the years since I had started developing strange symptoms—fever, joint aches, exhaustion, hand tremors, hives—I grew accustomed to doctors writing them off with a simple explanation.

But altitude was not causing my migraines. In fact, I was suffering from Lyme disease, Ehrlichia, and Babesia, the last being a tick-borne parasite that consumes oxygen in red blood cells. Due to these infections, a scan would later show that I was not getting enough oxygen to the left side of my brain. Living at a high altitude certainly didn’t help this situation, but the root cause was the fact that my oxygen levels were already compromised by infection.

Babesia is not the only tick-borne disease that can cause headaches; so can Ehrlichia and relapsing fevers. But with or without co-infections, the vast majority of Lyme disease patients complain of headaches as a chief symptom, with pain ranging from moderate to severe. Many patients, myself included, have encountered migraines so debilitating they’re relegated to bed in a dark room due to pain, light sensitivity and nausea. Though tick-borne diseases can cause pain throughout the cranium, migraines are usually focused to one side. As a child, I had four surgeries to correct weak muscles in my eyes, especially on the left, leaving scar tissue over that eye. I later learned that Lyme bacteria, spirochetes, like to hide out in scar tissue, which may explain why my migraines always started over that eye.

So why are headaches so common for Lyme patients? Spirochetes can enter the central nervous system by crossing the blood-brain barrier. This barrier is supposed to protect the brain from infection, but spirochetes are tricky and swift and can coil their way across, causing headaches for their victims.

Lyme is an inflammatory disease, so once spirochetes enter the central nervous system, they cause swelling there. In his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, Dr. Richard Horowitz equates this inflammation to a fire that ignites heat, redness, pain, and loss of function.[1] Feeling like my brain was going to explode out of my skull was not really hyperbole; my head was indeed swollen, but I just couldn’t see it the way I would be able to if  I’d had a swollen ankle or knee.

At my lowest points of illness, I got migraines several times a week. I tried to try to push through the pain. I wanted to be living my life, teaching and skiing. But I always paid a high price for not listening to my body—or in this case, to my brain. Ignoring the headache only increased the pain, sometimes sending me to bed for two or three days at a time. I got prescription medication, which I learned to take as soon as I felt a headache coming on, rather than trying to wait it out. I also found that staying hydrated, eating foods rich in iron, and stretching gently—to help increase blood flow—sometimes helped alleviate my headaches.

The best treatment, however, was rest. If you have a swollen ankle or knee, you stay off that joint, giving it time to heal. The same is true for your brain. Your head needs time to recover from inflammation, and nothing has helped that process more for me than sleep. Though I rarely get migraines these days, I still get pressure on the left side of my head when I get tired or neurologically overwhelmed. I never want to spend a day in bed, but one is better than being there for several days—and it’s certainly better than writhing on the bathroom floor. A day spent recuperating means more days on the slopes, and I’ll take as many of those as I can get.

[1] Horowitz, Richard I. Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press. 2013. (186)

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  jennifercrystalwriter@gmail.com

 

 

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**Comment**

Headaches with Lyme disease can be excruciating – particularly if you have Lyme and Babesia.  Bartonella also can give severe head pain.  Since I had all three, the head and spine were always my thorn.  I wondered if I’d ever have a day free from head pain.

Please know that appropriate treatment is necessary for this and YES, I am free from head pain after 5 years of treatment and a few relapses.  While I give credit predominantly to antimicrobials (for me, antibiotics) here’s a few things that seemed to help:

Lastly, I know of a few Lyme patients that also have a Chiari diagnosis.  In short, this is when inflammation from an infection causes the brain to be pushed through the opening at the base of the skull.  Since this is where most of my pain was I had a MRI to rule Chiari out.  Read about this condition here:  https://madisonarealymesupportgroup.com/2016/04/02/chiari/

Category:

Lyme, Pain Management

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What Happens When Reliable Testing Is Not Available? Lessons From Tick-borne Disease

https://www.galaxydx.com/covid-19-reliable-testing-is-not-available-lessons-from-tick-borne-disease/

What happens when reliable testing is not available? Lessons from Tick-borne Disease

March 19, 2020

In the United States as testing problems mounted for the novel coronavirus (SARS-CoV-2, the virus that causes COVID-19), tick-borne disease patients recognized something they have experienced.

Physicians rely on clinical symptoms as well as diagnostic testing to make treatment decisions. The more accurate a test is for a specific disease then the more certain a physician can be when making a diagnosis and beginning treatment. This ultimately results in a better outcome for the patient.

When testing is limited or inaccurate, public health and clinical decisions become much more difficult. A recent study found that the FDA-approved and CDC recommended two-tier testing protocol for Lyme disease missed 70% of cases where patients had an erythema migrans (EM) rash greater than 5 cm in diameter. The consequence has been dramatic both for individual patients and for obtaining public health resources for tick-borne disease.

But what happens when there is no test available at all? This was the challenge when SARS-CoV-2 appeared. The pandemic is exposing many of the challenges facing development and commercialization of new tests. Point of care (POC) diagnostics are ideal during public health emergencies because the assay is usually very simple to perform, and test results are available almost immediately. Examples of POC tests that are often used include a rapid strep test, a quick UTI screening test, or a rapid flu test in your doctor’s office.

However, for newly discovered pathogens like SARS-CoV-2, these assays are not immediately available meaning new ones must be developed, validated according to regulatory standards, and then offered commercially by approved laboratories with the appropriate equipment. Developing the test and acquiring the necessary reagents and supplies is a difficulty many laboratories face. In the race to develop a SARS-CoV-2 test, these difficulties had enormous consequences for the United States.

The issue began with the Center for Disease Control (CDC) providing local and state public health laboratories with diagnostic kits that could be used to run their FDA-approved assay on potential SARS-CoV-2 samples sent in by healthcare providers. Far fewer kits were distributed than state public health labs needed, and it was soon discovered that results were unreliable due to faulty reagents.

A test protocol used by the CDC was then made available for commercial and government laboratories to create their own laboratory developed tests (LDTs). However, validation of assays under the FDA and/or CLIA regulatory processes can take weeks and requires hard-to-find positive control samples, which extends the amount of time before healthcare providers can access reliable tests for potentially infected patients. Furthermore, news reports suggested that laboratories were having a hard time acquiring the necessary reagents and supplies for test development because manufacturers were overburdened by the global demand.

A graph showing the number of specimens tested by the CDC and public health laboratories between January 18th and March 17th of this year. As this situation is evolving rapidly, up to date information can be found at the following link (Source: CDC).

To shorten that development, the FDA has released a list of approved equipment substitutions and validation that can be piggybacked on existing validation work during the public health emergency. Commercial laboratories have now begun offering testing in the United States, alleviating the pressure on the public laboratories to keep up with demand. Up to date information about the current testing situation in the United States can be found here.

Conclusion

Accurate and accessible testing is increasingly necessary for emerging zoonotic diseases as shown by the ongoing coronavirus pandemic. Novel varieties of pathogens as well as supply chains and development issues can slow availability of tests. At the same time, these tests are needed now more than ever to determine the best route for patient care. They are also crucial for disease surveillance, assessing the true mortality and morbidity, determining appropriate resource allocation, and much more.

At Galaxy Diagnostics, our focus remains on testing for flea- and tick-borne diseases linked to acute and chronic illness. While we understand the urgent need for SARS-CoV-2 testing, we are leaving this expertise up to the virologists at state public health labs and at the big labs that can offer high volumes of testing on high-throughput systems for the most rapid turnaround of test results. In the meantime, we will continue to provide services with social distancing measures to protect our employees and local community.

References

Jacobs, A. (2020, February 24). New genomic tests aim to diagnose deadly infections faster. New York Times. Available at:
https://www.nytimes.com/2020/02/24/health/genomic-diagnostic-tests.html

Food and Drug Administration. (2020). Policy for diagnostic tests for coronavirus diseas-2019 during the public health emergency [Docket number FDA-2020-D-0987]. Available at: https://www.fda.gov/regulatory-information/search-fda-guidance-documents/policy-diagnostic-tests-coronavirus-disease-2019-during-public-health-emergency?utm_campaign=2020-03-16%20COVID-19%20Diagnostics%20FDA%20Updates%20Policy&utm_medium=email&utm_source=Eloqua

Centers for Disease Control and Prevention. (2020). Coronavirus disease 2019 (COVID-19) COVID-19 situation summary. Available at: https://www.cdc.gov/coronavirus/2019-nCoV/summary.html

Centers for Disease Control and Prevention. (2020). Coronavirus disease 2019 (COVID-19) testing. Available at: https://www.cdc.gov/coronavirus/2019-ncov/about/testing.html

Food and Drug Administration. (2018). Laboratory developed tests. Available at:  https://www.fda.gov/medical-devices/vitro-diagnostics/laboratory-developed-tests

Food and Drug Administration. (2017). Discussion paper on laboratory developed tests. Available at:   https://www.fda.gov/media/102367/download

Jordans, F. (2020, March 9). Experts: Rapid testing helps explain few German virus deaths. Yahoo! News. Available at: https://news.yahoo.com/experts-rapid-testing-helps-explain-172747085.html?guccounter=1

Johnson, C. Y. et al. (2020, February 25). A faulty CDC coronavirus test delays monitoring of disease’s spread. The Washington Post. Available at: https://www.washingtonpost.com/health/2020/02/25/cdc-coronavirus-test/

Harris, R. (2020, March 11). No guarantee you’ll get tested for COVID-19, even if your doctor requests it. NPR. Available at: https://www.npr.org/sections/health-shots/2020/03/11/814189027/no-guarantee-youll-get-tested-for-covid-19-even-if-your-doctor-requests-it?utm_source=facebook.com&utm_campaign=npr&utm_medium=social&utm_term=nprnews&fbclid=IwAR1f_aNJOFRrpHhfg3VqMxesht1V-c90tniQyDnHsFWs1I9aS1Wu-8Fq96Q

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For more:  https://madisonarealymesupportgroup.com/2020/03/21/study-shows-covid-19-testing-as-bad-as-lyme-msids-testing/

https://madisonarealymesupportgroup.com/2020/03/24/rapid-covid-19-test-another-pcr-test-looking-for-antibodies/

Recent good news for COVID-19 testing:  https://madisonarealymesupportgroup.com/2020/03/25/new-dna-sequencing-test-for-covid-20-100-accurate-can-also-test-for-5-strains/

Dr. Sin Hang Lee has also offered to re-test borderline or questionable positive coronavirus samples that are growing in numbers, as testing nationwide increases.

Category:

Testing, Viruses

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CDC Paid Maryland $123 Million to Promote Gardasil Vaccine As Requirement for School Attendance

https://vaccineimpact.com/2019/cdc-paid-maryland-123-million-to-promote-gardasil-vaccine-as-requirement-for-school-attendance/

CDC Paid Maryland $123 Million to Promote Gardasil Vaccine as Requirement for School Attendance

by Josh Mazer
Eye on Annapolis

March 24, 2020

Excerpts:

The Maryland Prevention and Health Promotion Agency (PHPA) has received millions — $123 million just between 2012–2017 — as part of an effort to require public schools to force children to get the human papilloma virus (HPV) vaccination. Those funds came in the form of grants from the Centers for Disease Control and Prevention (CDC).

The CDC maintains a nonprofit foundation that gets enormous amounts of money from Big Pharma — including Merck, the company that produces Gardasil, the HPV vaccine. At the very least, Maryland’s acceptance of those funds has the appearance of impropriety.

During a PHPA-hosted “HPV symposium” attended by state pediatric practices and Maryland Department of Health staffers in March 2018 at Ten Oaks, Maryland, the featured speaker — Dr. Alix Casler — encouraged attendees to offer free dinners, bottles of wine, and “Quality Doctor Incentives $” sales bonuses to get Maryland physicians on board with the HPV vaccine-pushing program. Dr. Casler offered a $5,000 cash payment to pediatric practices that achieve targeted HPV vaccine sales goals.

Dr. Casler is a paid spokesperson for Merck — to the tune of more than $59,000 just between 2013 and 2016, according to data compiled by ProPublica.

In 2016, the Maryland Partnership for Prevention — which lists the Maryland Department of Health as its top member — accepted $70,000 from the Association of Immunization Managers (AIM). AIM’s top “Corporate Alliance Members” are Merck, Pfizer, Sanofi Pasteur and Seqirus. That same year, legislation was introduced in Maryland to mandate the shot.

In the U.S., only three jurisdictions have made HPV vaccination mandatory: Rhode Island, Virginia and the District of Columbia. Clearly, based on the money and other incentives being injected into our public-health policy system, Big Pharma would love to see Maryland become the fourth to do so.

At the Maryland conference, then Delegate Lam promised the industry insiders that he was working with the Department of Health to mandate HPV vaccination as a “back to school” shot in Maryland. When queried, he denied it. Why is Senator Lam working in secret to advance a pharma product- and what constituency is he representing when he does so?

Money should not trump science 1,2,3. We need to be able to trust our government. Maryland’s leaders should stop the Merck money train and focus on proven public-health strategies to help prevent HPV cancers, such as screening and avoiding risky behaviors. No amount of money should persuade our government to allow it to be pushed in our schools.

Maryland public health bureaucrats have no scientific rationale for this illogical, dangerous program. There are 250 cases of cervical cancer in our state per year, with about 60 deaths. Injecting 1.5 million young people between the ages of 9 and 29 with two doses of this shot will not change anything with regards to cervical cancer prevalence in Maryland. It will, however, provide a $750 million gravy train to Merck, the department of health, and pediatric practices in our state.

When your pediatrician earnestly pitches this shot for your healthy child, ask whether your kid is the one that tips the medical practice into the $5000 bonus pool. Ask what evidence there is that the shot prevents cancer, and why cervical cancers are surging in countries that aggressively pushed the shot. Ask why your healthy child should take the risk of becoming another Maryland HPV vaccine statistic, to be ignored, denied, and covered up. Just like the HPV vaccine caused death of Baltimore County resident Christina Tarsell.

To read the full research, a PDF is included by clicking here.

Read the full article at Eye on Annapolis.

More information about Gardasil

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For more:  https://madisonarealymesupportgroup.com/2018/09/29/shocking-flaws-in-gardasil-trial-design-prevents-safety-assessment/

https://madisonarealymesupportgroup.com/2020/03/03/neuroimmunology-what-role-for-autoimmunity-neuroinflammation-and-small-fiber-neuropathy-in-fibromyalgia-chronic-fatigue-syndrome-and-adverse-events-after-hpv-vaccination/

https://madisonarealymesupportgroup.com/2018/09/24/more-deaths-after-hpv-vaccination/

https://madisonarealymesupportgroup.com/2017/04/14/gardasil-and-female-reproduction/

https://madisonarealymesupportgroup.com/2017/02/16/gardasil-vasculitis-msids/

https://madisonarealymesupportgroup.com/2016/07/19/motor-and-sensory-findings-in-girls-who-received-gardasil/

https://madisonarealymesupportgroup.com/2017/07/02/hpv-after-vaccines/

https://madisonarealymesupportgroup.com/2016/04/24/gardasil-and-bartonella/

https://madisonarealymesupportgroup.com/2017/10/02/sacrificial-virgins-hpv-vaccine/

Category:

vaccines

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Wisconsin Governor Evers Declares “Safer at Home” Order

March 25, 2020

https://evers.wi.gov/Documents/COVID19/EMO12-SaferAtHome.pdf

Enforcement. This Order is enforceable by any local law enforcementofficial, including county sheriffs. Violation or obstruction of this Order is punishable by up to 30 days imprisonment, or up to $250 fine, or both. Wis. Stat. § 252.25.

Duration. This Order shall become effective at 8:00 a.m. on Wednesday, March 25, 2020 and will remain in effect until 8:00 a.m. on Friday, April 24, 2020, or until a superseding order is issued.

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For more:  https://madisonarealymesupportgroup.com/2020/03/22/dr-ron-pauls-warning-of-coronavirus-hoax/

Excerpt:

The chief fearmonger of the Trump Administration is without a doubt Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health. Fauci is all over the media, serving up outright falsehoods to stir up even more panic. He testified to Congress that the death rate for the coronavirus is ten times that of the seasonal flu, a claim without any scientific basis.

For more:

https://madisonarealymesupportgroup.com/2020/03/24/doj-appeals-to-congress-for-new-emergency-powers-amid-pandemic-what-we-should-be-concerned-about/

https://madisonarealymesupportgroup.com/2020/03/22/temporary-changes-to-uk-mental-health-act-due-to-covid-19-can-be-detained-by-1-doctor-treated-against-your-will-for-longer-period-of-time/

 

Category:

Activism, Viruses

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What Exactly is Hydroxychloroquine, The Drug That Is Being Tested As The First Potential Coronavirus Treatment?

https://www.forbes.com/sites/saibala/2020/03/19/what-exactly-is-hydroxychloroquine-the-drug-that-is-being-tested-as-the-first-potential-coronavirus-treatment/

What Exactly Is Hydroxychloroquine, The Drug That Is Being Tested As The First Potential Coronavirus Treatment

March 19, 2020

Sai Balasubramanian, J.D.Contributor

I write about clinical medicine, innovation in healthcare, and health policy.

During a press conference earlier today, March 19th, the Trump administration announced that chloroquine and hydroxychloroquine, among other drugs, are being approved by the Food and Drug Administration (FDA) to test as potential COVID-19 coronavirus treatments. This is not the first time these drugs have been mentionedas potential treatments for the viral illness: early testing of hydroxychloroquine in France showed promising results, with results indicating that 50% of patients that originally tested positive for the virus tested negative after just three days of treatment. However, though the results are still extremely unclear whether this is a viable solution, it may be critical to understand what this drug exactly is, and what is known about it already….(See link for article)

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**Comment**

If you are a Lyme/MSIDS patient you are probably well aware of the drug Plaquenil.  You might even have taken it – I have.

Initially approved for malaria (although to this day they don’t know how it works),  it has become a “go to” drug for Lyme literate doctors treating Lyme/MSIDS due to its ability to inactivate the body’s immune response which decreases inflammation.

According to this press release https://med.umn.edu/news-events/covid-19-clinical-trial-launches-university-minnesota, the University of Minnesota is conducting a post-exposure treatment clinical trial for plaquenil for coronavirus COVID-19 disease.

Study parameters:

To be eligible, one must live with someone who has diagnosed coronavirus COVID-19 or be a healthcare worker with a high-risk exposure within the past three days. The research study medicine will be delivered to their home overnight. If you think you may be eligible to participate in the trial, please email covid19@umn.edu for further instructions.

This article explains the difference between chloroquine and hydroxychloroquine:  https://www.medpagetoday.com/infectiousdisease/covid19/85552  The author points out that the two drugs are related and both used for malaria, but that hydroxychloroquine, is the stronger of the two.

Dr. Vick points out that chloroquine (Aralen) is contraindicated in people who have glucose-6-phosphate dehydrogenase (G6PD) deficiencywhich is found predominantly in males of African or Mediterranean origin and is evidently fairly common.  The usage of Chloroquine is associated with hemolytic anemia in those with G6PD deficiency.

Hydroxychloroquine (plaquenil), on the other hand, does not induce hemolytic anemia in people with G6PD deficiency despite the molecular similarity to chloroquine. It has shown effectiveness in inhibiting the pandemic coronavirus during in vitro testing.

 

 

 

Category:

Treatment, Viruses

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