Struggling to afford a Lyme-literate doctor? Explore options like reimbursement, payment plans, and NP/PA care. Learn how to access affordable treatment and free resources for tick-borne diseases.
The best way to be appropriately evaluated and treated for tick-borne disease is to see a Lyme Literate Medical Doctor (LLMD). These practitioners are often trained by others in the Lyme field and specialize in the complexities of diagnosis, testing, and treatment of tick-borne disease. LLMDs can be pricey, however, because many of them don’t accept insurance (for information on why that is, see “Why Isn’t My Lyme Disease Treatment Covered by Insurance?”)
Perhaps you’ve been diagnosed with Lyme by your primary care doctor, but you aren’t feeling better after a short course of antibiotics, so now you’d like to see an LLMD. Maybe you have symptoms and risk factors for tick-borne disease, but your standard tests have come back negative, so you’d like to see an LLMD for a detailed clinical evaluation and specialized testing. Maybe you suspect you have a co-infection, but your primary care is only familiar with Lyme. You’ve done your homework and have found an LLMD in your area, but the price of an appointment is prohibitive.
Now what? There are several options you can explore:
Ask about reimbursement
Before just walking away due to sticker shock, ask the LLMD’s office if they offer a “super-bill” that you can submit to insurance for reimbursement. Though the office does not participate with insurance, you may be able to submit the “super-bill” yourself and get at least partial reimbursement for your out-of-pocket costs. Call your insurance company to learn how to submit a claim yourself and to find out what kind of coverage you can expect for an out-of-network provider (a provider who is not otherwise covered by your insurance network). If a claim is denied, ask your insurance company about the appeal process.
Ask about payment plans
Given the high cost of appointments, some providers may offer payment plans. Call the provider’s office to find out if that is an option.
Look into NPs and PAs
Many busy LLMDs have a Nurse Practitioner (NP) or Physician’s Assistant (PA) working in their practice. These practitioners see patients individually, under the guidance of the LLMD, who oversees the care of all patients in the practice and trains the NP or PA. NPs and PAs can order tests, make clinical evaluations, and write prescriptions. The cost for an appointment with an NP or PA is usually less than the cost for an appointment with the LLMD.
Shop Around
Different LLMDs have different appointment costs. The one in your area may be too expensive, but there could be another one just a little farther afield. Think about how far you’d be willing and able to travel to get good and affordable care. (You can search for an LLMD through GLA’s search engine.)
Advocate With Your Current Doctor
If your primary care doctor or other physician who is covered by insurance is not well-versed in Lyme disease, they may be willing to learn. Some doctors are set in their ways, but others are more open to collaborative care. Try gathering information about Lyme disease to bring and discuss with your doctor and talk together about the complexities of Lyme testing and the importance of a clinical diagnosis. You can do this with treatment protocols, too. (For more, see “How to Be an Advocate with Your Non-Lyme Doctor”.)
Explore Financial Assistance
There are several organizations that offer financial assistance for the high costs of Lyme disease appointments and/or treatment. On the Financial Assistance Resources page, GLA maintains a list of organizations that help with treatment access, reimbursement, and federal and state assistance programs.
Join a Support Group
Lyme disease support groups can offer more than emotional support, which is very important; members may also be able to recommend doctors or financial assistance resources. Groups come in different formats, from formal in-person meetings, to small in-person or remote discussions, to online Facebook groups. To find a support group, check out GLA’s Support Groups page.
Get One-on-One Support
Through the Peer-to-Peer Mentor Program, GLA can connect you with a fellow Lyme disease patient, or a knowledgeable caregiver of one, who can offer you one-on-one support. The mentor may have advice for you on finding or affording an LLMD. This program is free.
Note: this article has two primary purposes. First, it is a compilation of all the existing safety and toxicology data on DMSO for anyone planning to utilize it in a clinical setting. Second, it is meant to serve as a place to collect reader’s (often incredible) experiences with DMSO so individuals who are considering using DMSO can have testimonials to juxtapose with the wealth of data I am gradually presenting on DMSO.
My time in the medical field has led me to accept many medical practices are adopted because of politics or economics rather than because existing evidence shows they work. Nonetheless, certain instances of this happening still astound me to this day, particularly the blacklisting of DMSO (dimethyl sulfoxide) as:
This simple chemical is incredibly safe and effective and treats a wide range of challenging medical conditions that impact millions that still lack an effective therapy (outside of DMSO).
Because of its efficacy, once discovered, it took the country by storm, resulting in millions using it, the scientific community getting behind it and publishing thousands of studies on DMSO, numerous pharmaceutical companies making large investments to bring it market, professional athletes promoting it, numerous governors, congressional representatives and senators (on behalf of both themselves and their constituents) pressuring the FDA to give it a fair chance for decades and state legislatures independently legalizing it because the federal government would not.
Many approved pharmaceutical products take advantage of DMSO’s properties to work (e.g., in those products, DMSO is often classified as an inert “vehicle”). Similarly, DMSO is FDA approved for one condition (interstitial cystitis) and is approved for a wide variety of veterinary uses (e.g., the same conditions it treats in humans).
Over the past 40 years, more than 10,000 articles on the biological implications and 30,000 articles on the chemistry of DMSO have appeared in the scientific literature—much of which, as I’ve shown here is remarkably compelling and paradigm shifting in healthcare.
Yet, despite all of that, DMSO was effectively erased from history. It is now widely seen as an unproven and dangerous therapy, and even within the natural health field, most people do not know it exists. (See link for article)
DMSO Could Save Millions From Brain and Spinal Injury
The decades of evidence showing DMSO revolutionizes the care of many “untreatable” circulatory and neurologic conditions.
Sep 15, 2024
By a Midwestern Doctor
Story at a Glance:
DMSO is a remarkably safe chemical that protects cells from otherwise fatal stressors (e.g., freezing, burning, shockwaves, ischemia). Since the heart, brain, and spinal cord are particularly vulnerable to injury, DMSO can produce miraculous results for those conditions.
The usage of DMSO completely transforms the management of strokes (including brain bleeds), heart attacks, and spinal cord injuries. As I will show here, had the FDA not sabotaged DMSO’s adoption, in addition to countless lives being saved, millions could have been protected from a lifetime of disability or paralysis.
DMSO has many other remarkable properties. For example, it stabilizes proteins, and thus treats many challenging protein disorders (e.g., amyloidosis and numerous genetic disorders).
Many conditions DMSO treats are typically considered to be incurable. In this article, I will focus on DMSO’s remarkable utility for the conditions that respond best to intravenous DMSO (e.g., a variety of circulatory disorders like varicose veins or Raynaud’s) and complex neurological disorders (e.g., Down’s Syndrome, Developmental Delay, ALS, Alzheimer’s, Parkinson’s), along with how to administer IV DMSO and DMSO stroke protocols.
If I were stranded on a desert island or knew the world was ending and I could only bring a few therapies with me, one of them, without a doubt, would be DMSO. This is because:
It treats a wide range of severe illnesses which are often otherwise incurable and frequently fatal or lead to a lifetime of permanent disability.
It effectively treats acute injuries and rehabilitates chronic musculoskeletal disorders (e.g., arthritis). Because of this, it’s one of the best “pain medicines” out there and has allowed many to get their lives back.
It has a variety of unique properties that open up a completely different dimension to how medicine can be practiced.
It is one of the safest medically active substances in existence.
Remarkably, in the 1960s, this was recognized and DMSO took the nation by storm (e.g., people everywhere were clamoring for it, gas stations would often advertise they sold it, and tens of thousands of research studies were conducted by enthusiastic scientists around the globe). Now however, outside of it being a laboratory chemical or an alternative therapy some people use for joint pain, few are even aware of DMSO’s existence.
This was due to the FDA waging a multi-decade long war against DMSO (despite widespread outcry from Congress and the public), which I believe was arguably the worst thing the FDA has ever done to the country.
Since I am uniquely positioned to present many of the forgotten sides of medicine to the public, I’ve long felt the DMSO story needs to be told. Simultaneously however, since there is a wealth of data on this topic, I wanted to ensure I honored the importance of this subject and accurately present it. For this reason, I’ve spent the last three months reading and arranging thousands of pages of literature. Since there is so much to say on this topic, this series will be broken into a few parts. In the first installment, I will cover the key properties of DMSO and the challenging conditions where it provides the most profound benefits. (See link for article & note there will be another part to it explaining where to get it, dosing, and non-IV protocols)
•The standard approach for treating pain and musculoskeletal injuries typically involves giving NSAIDs (e.g., ibuprofen), and in more severe cases, opioids. Unfortunately, these drugs are extremely dangerous (e.g., each one kills tens of thousands of people each year), but nonetheless have remained the standard of care for decades.
•DMSO is a remarkably effective pain-killing agent, in many cases allowing individuals who’d been disabled for years by their pain (e.g., a failed spine surgery or severe arthritis—DMSO’s most popular use) to get their lives back. Furthermore, it can treat many types of pain other therapies do not work on (e.g., complex regional pain syndrome).
•DMSO is a highly effective therapy for healing wounds and creating healthy scars, making it particularly helpful for recovering from surgery.
•DMSO is incredibly effective for healing a wide range of acute and chronic musculoskeletal injuries (e.g., arthritis, headaches, neck and back strains, restless leg syndrome, sprained ankles, trigeminal neuralgia and numerous traumatic injuries). It typically has an 80-90% success rate and often has an instant and dramatic effect. This use was particularly popular with professional athletes, as it allowed many of them to quickly return to the field rather than be out for the rest of the season.
•In this article, I will review the scientific literature that explains how DMSO provides pain relief and healing, the vast body of evidence (comprising of thousands of patients) showing it indeed does, and our preferred DMSO home treatment protocols for pain, arthritis, and musculoskeletal injury (along with the best sources for procuring DMSO). (See link for article)
DMSO is a powerful (but safe) anti-inflammatory agent that is often extremely helpful for autoimmune conditions. For example, it’s frequently used to treat asthma, inflammatory bowel diseases (e.g., ulcerative colitis and irritable bowel syndrome), interstitial cystitis (painful bladder syndrome), ITP, lupus, multiple sclerosis, myasthenia gravis, scleroderma, Sjogren’s syndrome, and uveitis.
DMSO is also remarkably effective at stabilizing and refolding proteins. This allows it to treat a variety of “untreatable” genetic disorders, and conditions characterized by the abnormal accumulation of misfolded proteins in the body (e.g., amyloidosis) or chronic deposits of excessive contractile collagen (e.g., surgical scars, abdominal adhesions, Dupuytren’s contractures, and Peyronie’s disease). Two of the most dramatic examples of this are scleroderma and fibrodysplasia ossificans progressiva—both “untreatable” conditions where DMSO can provide truly lifesaving benefits.
In this article, I will present the wealth of evidence substantiating each of those uses, share my theory on how the unusual antimicrobial properties of DMSO explain some of these benefits, and present DMSO treatment protocols for many of those disorders. Additionally, since many readers requested it, I put together a simplified guide on how to use DMSO orally or topically.
One of DMSO’s remarkable properties is its ability to function as a chemical chaperone and stabilize the three dimensional structure proteins assemble (fold) themselves into. This is important as many complex illnesses (e.g., many genetic disorders) result from misfolded proteins and presently can only be (ineffectively) managed with expensive drugs that aim to normalize the function of the abnormal proteins.
Studies have shown DMSO can improve the functionality of the dysfunctional proteins that are seen in genetic disorders like cystic fibrosis,1 hereditary nephrogenic diabetes insipidus,1,2 Machado-Joseph disease,1 Niemann–Pick disease,1,2,3,4,5,6 and a defective protein that causes motor disorders and early death in mice.1 Likewise, it can also treat a variety of complex diseases which result from misfolded proteins damaging surrounding tissue. (See link for article. He gives a study in which DMSO was used to treat Alzheimer’s, contractures, Peyronie’s disease, FOP, Scleroderma, & other autoimmune issues like lupus, asthma, IT, MS IBD, MG,& Sjogren’s syndrome) . Also many patient testimonials are given, including the improvement of Downs Syndrome.)
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**Comment**
Some of the most thorough articles on DMSO yet. I highly recommend making a pdf of them for your own usage. This safe treatment has been attacked by the FDA so it may be nearly impossible to get good information on it in the future.
Rejuvenate Your Cells and Combat Chronic Illness with a Fasting Mimicking Diet
By Dr. Marty Ross
Sept. 2024
If you’re grappling with chronic Lyme disease, Bartonella, Babesia, or mold toxicity, the term “fasting” may seem hard to think about. However, the Fasting Mimicking Diet (FMD) offers a scientifically backed, less intense method that promises significant health benefits. Imagine rejuvenating your injured cells and potentially alleviating symptoms without the extreme measures associated with traditional fasting.
Interested? Let’s explore how FMD may be the game-changer you need.
What is the Fasting Mimicking Diet?
The Fasting Mimicking Diet is a revolutionary dietary protocol that mimics the effects of fasting while still allowing some nutrient intake. Developed by Dr. Valter Longo and his team at the University of Southern California, this diet aims to provide the health benefits of fasting without the hardship of complete food deprivation. It’s a five-day plan that involves reduced calorie intake, typically between 750 to 1,100 calories per day, mainly from plant-based foods, while ensuring that your body enters a fasting-like state.
Understanding Cellular Rejuvenation
Cellular rejuvenation refers to the process of renewing old or damaged cells. This concept is critical for those with chronic illnesses like Lyme disease, Bartonella, Babesia, and mold toxicity, where cellular damage and inflammation from oxidation damage could lead to ongoing symptoms. FMD has been shown to trigger autophagy, a crucial cellular cleanup process where the body removes damaged cells and regenerates new ones. This process not only helps in maintaining cellular health but also stimulates the production of stem cells, which are essential for repairing and regenerating tissues and can help remove senescent zombie cells. By doing so, FMD promotes cellular regeneration and can lead to improved overall health for people living with chronic tick-borne infections and mold toxicity. FMD also potentially enhances longevity and reduces the risk of various age-related diseases.
Key Health Enhancing and Anti-Aging Pathways Affected by the Fasting Mimicking Diet
Autophagy Pathway: FMD induces autophagy, a critical process for cellular cleanup and renewal. This promotes the removal of damaged proteins and organelles, supporting longevity and overall health, and may help reduce cellular debris linked to chronic infections like tick-borne diseases and mold toxicity.
Cellular Senescence: FMD aids in addressing cellular senescence, where cells lose their ability to divide and function optimally while often developing a pro-inflammatory secretory profile known as the Senescence-Associated Secretory Phenotype (SASP). Chronic infections are a cause of early cellular senescence. By removing these senescent cells and fixing the effects of SASP, the diet may reduce inflammation and tissue damage, contributing to healthier aging, an extended lifespan, and improved health for people with chronic infections and mold-related issues.
Improvements in Immune Function: FMD enhances immune function by promoting the regeneration of immune cells and supporting a balanced immune response. This can lead to a more robust defense against infections and a reduction in inflammation, benefiting individuals with chronic illnesses such as tick-borne diseases and mold toxicity. Enhanced immune function contributes to healthier aging and improved resilience against stressors, ensuring better overall health and longevity.
mTOR (Mechanistic Target of Rapamycin): FMD reduces signaling through the mTOR pathway, which is closely linked with cell growth, aging, and immune function. Inhibiting mTOR activity can enhance cellular stress resistance, longevity, and may aid in managing chronic infections by improving immune response.
IGF-1 (Insulin-like Growth Factor 1): FMD lowers levels of IGF-1, a hormone that promotes growth and has been associated with aging and cancer. Reducing IGF-1 can lead to decreased cellular proliferation and increased autophagy, which may benefit those dealing with persistent infections and inflammation.
AMPK (AMP-Activated Protein Kinase): By activating AMPK, the diet enhances energy metabolism and promotes the breakdown of fats. This pathway is associated with improved longevity, protection against age-related diseases, and could also support detoxification and energy balance in individuals facing mold toxicity and chronic infections.
Sirtuins Activation: The diet stimulates sirtuins, a family of proteins that regulate cellular health and longevity. Activation of sirtuins is linked to improved DNA repair, enhanced stress resistance, and extended lifespan; these functions may also aid individuals with chronic tick-borne infections and mold toxicity by bolstering cellular resilience and repair mechanisms. (See link for article)
On September 22nd, dignitaries from around the world will gather at the United Nations headquarters in New York for a meeting called Summit of the Future.
At the conference, world leaders will sign Pact for the Future, an accord in which member states will pledge their allegiance to the UN as a central, unifying government.
“We, the Heads of State and Government, representing the peoples of the world, have gathered at United Nations Headquarters to protect the needs and interests of present and future generations through the actions in this Pact for the Future,” the document begins.
“We recognize that the multilateral system and its institutions, with the United Nations and its Charter at the centre, must be strengthened to keep pace with a changing world.”
Member states then repeatedly “reaffirm” their “unwavering commitment” to the UN, its charter, its purposes, its principles, and Agenda 2030. They vow to comply with the UN’s International Court of Justice and promise to “reform the international financial architecture.”
“Reform of the international financial architecture is an important step towards building greater trust in the multilateral system,” says the treaty. “We commend ongoing reform efforts and call for even more urgent and ambitious action to ensure that the international financial architecture becomes more efficient, more equitable, fit for the world of today and responsive to the challenges faced by developing countries in closing the SDG financing gap. The reform of the international financial architecture should place the 2030 Agenda at its centre, with an unwavering commitment to investing in the eradication of poverty in all its forms and dimensions.”
Altogether, the document lists 60 actions that member states should take. In nearly all of them, the agreement makes it clear that the countries’s interests revolve around the UN and its globalist systems.
A clause buried toward the end of the document requires member states to embed UN “agreements and resolutions” in their own national laws:
[Member states will] deepen United Nations’ engagement with national parliaments in United Nations intergovernmental bodies and processes, in accordance with national legislation, including through building on the efforts of the United Nations and Inter-Parliamentary Union to engage parliamentarians to maintain support for the implementation of relevant UN agreements and resolutions.
(See link for article and video)
“In spirit, the Summit and Pact for the Future is a relaunch of the Great Reset,” said Tim Hinchliffe, publisher of The Sociable. “Both talk about reshaping our world, which includes a desire to transform the financial system and to implement global governance surrounding issues such as climate change, healthcare and all things related to the SDGs” (Sustainable Development Goals).
“While the WEF has no direct, authoritative or legislative power to carry out its agendas, the Pact for the Future would be signed by member states whose governments wield actual executive and legislative powers,” Hinchliffe said.
“What they are trying to do is to take the WEF agenda … and turn it into solid international law and from there into solid domestic law.” ~ Francis Boyle, J.D., Ph.D. Source
House of Representatives passes act telling WHO to pound sand
But current White House is all in on the WHO Pandemic Treaty.
If the president signs the Pandemic Treaty without Congressional approval, He could sign over powers to any other globalist organization. (IMF, UN, WEF, etc.) Think about the ramifications of this. This should not be a partisan issue. It’s a Constitutional issue and everyone should be for the sovereignty of the United States which is a country governed by state and federal laws. If you think it’s hard to contact your reps now on issues, imagine when you have to call a UN, WEF, or WHO phone number.
Globalist Treaty Scenarios:
Could WE/WHOF supersede environmental laws?
Could WE/WHO supersede health laws?
Could WHO/WEF, etc. supersede our Constitutional freedom of speech?
Could UN force us to go to war?
Could IMF treaties supersede our monetary policy and instate global currency?
The possibilities are endless and frightening. Contact your representatives today. Tammy Baldwin did not vote for Massie’s bill.
Start calling your Senators if they are D or I and tell them to vote yes or miss the vote. Call daily.
Today, the House of Representatives passed H.R. 1425, the No WHO Pandemic Preparedness Treaty Without Senate Approval Act, that will ensure the White House does not enter into any agreement with the WHO on pandemic preparedness without first getting the constitutionally required advice and consent from the U.S. Senate.
Article Excerpts:
The legislation, sponsored by Representative Tom Tiffany (R-WI), is an essential step in protecting the sovereignty of the United States. The World Health Assembly of the World Health Organization is attempting to become the global authority on pandemic responses by adopting a Pandemic Preparedness treaty and amendments to the International Health Regulations. Eagle Forum believes that both documents should be considered treaties and be subject to the constitutional requirement of Senate approval.
“Considering the WHO’s record of handling the COVID-19 pandemic, they should not be allowed to move forward with any treaty or agreement that gives them more power over our lives and livelihoods. Americans lost their freedoms because of the WHO’s ‘voluntary’ guidance on lockdowns, masking, school closures, travel restrictions, and vaccine mandates. Now the WHO is attempting to make their failed policies mandatory with these new treaties. Congress must stand up for their right to weigh in before the United States joins these international power grabs. Passage of H.R. 1425 is a step in the right direction.”
The Senate companion bill, S. 444, is supported by every Republican Senator. In addition, on August 29th, twenty-six Republican governors came together to state that they would not comply with the World Health Organization’s attempt at one world control over health policy saying, “Put simply, Republican Governors will not comply.”
H.R. 1425 passed the House by a vote of 219-199. Four Democrats crossed the aisle to support the legislation.
And on 9/11/24, the House adopted Rep. Thomas Massie’s amendment protecting Americans from unconstitutional WHO agreements and treaties. Laws that seek to bind Americans in the U.S. must first pass both the House and the Senate.
Weapons Maker Develops System to Identify & Counter Online ‘Disinformation,’ Prototyped by DARPA
By Didi Rankovic
Sept. 6, 2024
Various military units around the world (notably in the UK during the pandemic) have been getting involved in what are ultimately, due to the goal (censorship) and participants (military) destined to become controversial, if not unlawful efforts.
But there doesn’t seem to be a lot of desire to learn from others’ mistakes. The temptation to bring the defense system into the political “war on disinformation” arena seems to be too strong to resist.
Right now in the US, Lockheed Martin is close to completing a prototype that will analyze media to “detect and defeat disinformation.”
And by media, those commissioning the tool – called the Semantic Forensics (SemaFor) program – mean everything: news, the internet, and even entertainment media. Text, audio, images, and video that are part of what’s considered “large-scale automated disinformation attacks” are supposed to be detected and labeled as false by the tool.
The development process is almost over, and the prototype is used by the US Defense Department’s Defense Advanced Research Projects Agency (DARPA). (See link for article)
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Go here to take action to keep public spaces and services accessible without digital ID.
The Diabolical “Save Act” Puts Americans in Chains
Guest post by Kelleigh Nelson
Sept. 3, 2024
Article Excerpts:
So, the SAVE Act isn’t about prohibiting non-citizens from voting – what it really does is to make US citizens out of everybody who is born in the United States. All the Islamists and CCP males who breach our borders – their children would be “US Citizens” and eligible to vote. That’s the “hidden” agenda behind the SAVE Act.
I expect that most people supporting the SAVE Act have no idea what it really does. But I assure you that whoever drafted this nasty bit of poison knew exactly what it would do.
The SAVE Act actually nullifies what Senator Jacob Howard said when he introduced the 14th Amendment’s citizenship clause, “Its grant of citizenship would not include persons born in the United States who are foreigners or aliens.”
Documentary Proof to Vote
This Act would cause women who have married and changed their surnames to go through the same thing they’re going through to get the Driver’s License ID to fly or enter a federal building….
American citizens are being penalized, and there is an ulterior motive in making us believe we must have the Real ID.
If you have a “Star Card” type of Real ID Driver’s License, it is a federal identification and tracking card.
The globalists are getting tired of the delays and will shove this through causing a nightmare at airports one day. What people don’t realize is that there are 16 different IDs that can get you on an airplane. It is on the TSA website.
The Real ID card distinctive is that the photograph that is taken is a facial recognition, digitized photograph taken in a special way that is linked to actual international standards that come out of the United Nations.
According to the author, the UN wants to eliminate all travel – even in cars – to save the planet, and Real ID will ultimately be used for medical car, purchases, registering at hotels and everything. Once digitized, you can be shut down with the flip of a switch.
Tell your reps you want nothing to do with Real ID and the ‘Save Act.’
Young boy develops Powassan encephalitis after camping trip
Although the Powassan virus is considered to be a rare tick-borne illness, the number of cases is rising, and at an alarming rate. A recent survey found, a 4-fold rise in the number of Powassan virus cases in the US from 2014 to 2023 (compared with 2004 to 2013). [3]
This summer, a 9-year-old boy in Canada developed Powassan virus encephalitis, a life-threatening condition. In Pennsylvania, another young child was hospitalized with the virus. And, in April, an older man from Massachusetts was infected. Meanwhile, last year, a Maryland resident died from Powassan encephalitis after contracting it in Canada.
Powassan virus – transmitted in 15 minutes
The Powassan virus, which is transmitted through the bite of an infected blacklegged tick, can be deadly. And, most concerning, as cases are rising, the infection can be contracted within 15 minutes of a tick attachment.
The virus can cause fever, headache, vomiting, loss of coordination and memory and speech problems. It can also cause encephalitis (inflammation of the brain) and meningitis (inflammation of the membranes surrounding the brain and spinal cord.)
However, it often does not present with any symptoms, according to the CDC.
POWV encephalitis can be deadly
From 2004 to 2022, the US reported 288 cases of Powassan virus infection. Of these cases, 72 (25%) occurred in children, 264 patients (92%) required hospitalization, and 36 patients (13%) died.1
Patients infected with the virus have a “10% risk of developing fatal encephalitis and up to 50% of infected patients have long-term neurologic damage.”2
Up to 50% of patients have long-term neurologic complications.
The prognosis for individuals with Powassan virus neuroinvasive disease is poor. The case fatality rate is 10%–15%, and survivors have about a 50% probability of persistent neurologic deficits, including headaches, altered mental status, and cognitive difficulties.1
There is no treatment for the Powassan virus.
Case Report: 9-year-old boy
In July, a 9-year-old boy, residing in Canada, was hospitalized with Powassan encephalitis, after returning from a camping trip in northern Ontario.
Blatman and colleagues describe the case in their article, “Powassan virus encephalitis in a 9-year-old.”1
The young boy was admitted to the hospital with a fever, neck stiffness and headache, which began 1 week after returning from his camping trip.
Initially, he was treated with ceftriaxone and vancomycin for suspected meningitis.
PCR testing of the CSF for viral causes of meningitis or encephalitis, however, was negative. Bacterial culture and Gram stain of the CSF sample was also negative. And, an MRI of the brain was unremarkable.
The patient had no known tick bites or rashes.
“Over the next 48 hours, blood cultures showed no growth,” the authors state. However, “The patient remained persistently febrile with ongoing severe headache.”
After 3 days in the hospital, the boy’s condition worsened and he was transferred to the ICU. At this point, he was nonverbal and nonresponsive to commands, according to the authors.
Testing for Lyme disease was negative.
“Tick-borne Powassan virus encephalitis is associated with high mortality and a risk of long-term neurologic sequelae in survivors.”
Repeat EEG showed generalized slowing of brain activity. Meanwhile, a repeat MRI of the patient’s brain and full spine showed subtle bilateral basal ganglia and substantia nigra.
However, CFS testing was negative for autoimmune encephalitis.
“Given concern for potential autoimmune encephalitis, the patient received intravenous immunoglobulin at a dosage of 1 g/ kg for 2 days, with notable improvement in his level of consciousness within 24–48 hour,” the authors state.
Within 2 months, the boy had made a complete recovery.
New research indicates that the Powassan virus may be more deadly in older patients. “… only minimal infectious doses of the virus were highly lethal in older mice and that lethality increased >10-fold with age,” states Mackow.2
“Increased awareness of Powassan virus among clinicians in Canada will likely lead to increased identification of Powassan virus and other arthropod-borne infections, which should always be reported,” the authors state.
CMAJ 2024 August 26;196:E973-6. doi: 10.1503/cmaj.240227
Megan C. Mladinich et al, Age-dependent Powassan virus lethality is linked to glial cell activation and divergent neuroinflammatory cytokine responses in a murine model, Journal of Virology (2024). DOI: 10.1128/jvi.00560-24
Passive surveillance of Powassan virus in human-biting ticks and health outcomes of associated bite victims. Siegel, Eric et al. Clinical Microbiology and Infection, Volume 30, Issue 10, 1332 – 1334
For the last two years, Coppe Laboratories has dedicated a significant amount of time and resources to dispelling the myth that infection with Powassan virus, a virus transmitted by tick bite, is rare. The Centers for Disease Prevention and Control (CDC) reports only 100 cases of Powassan virus infection in the United States in the last 10 years. Indeed, that statistic gives the illusion that Powassan infection is rare. However, did you know that the only infections reported to CDC are those that are life-threatening, particularly cases causing severe inflammation of the brain like the case reported in LiveScience?
Coppe has published three new papers in the last year that clearly show Powassan virus infection is not rare are at all, and until testing for this virus is included as part of tick-borne disease screening panels infections will continue to be underreported. Coppe’s Powassan Guide, which can be downloaded from the website, summarizes the findings from both tick and human Powassan prevalence studies, as well as defining the patient populations that would benefit most from Powassan testing.
Coppe Labs, a specialized CLIA-certified lab, right in Waukesha, Wisconsin tests for Powassan, West Nile, Anaplasma, Babesia, Human Herpes Viruses 6 & 7, COVID, and Lyme disease.
Regarding IVIG, it has been used successfully in many Lyme/MSIDS patients including this young autistic boy infected with borrelia, babesia, and bartonella. After a rough week of treatment suddenly this boy could remember things, he became happy, social, and agreeable with fewer tics. Disulfiram also played a key role as well as targeting bartonella. IVIG has also been used in PANS and PANDAS with some success.
Susannah Cahalan, who wrote the book Brain on Fire: My Month of Madness, was given steroids, plasmapherisis, and IVIG for autoimmune encephalitis.
Dr. Frid uses IVIG for treating infections induced autoimmune encephalitis.
Madison Area Lyme Support Group 