Archive for the ‘Lyme’ Category

Self-Image & Memory Loss

https://www.globallymealliance.org/blog/dear-lyme-warrior…help-self-image-and-memory-loss

As a Lyme warrior, how do I love and forgive this new version of myself, even though it’s not who I am at my core?

Lyme and other tick-borne diseases can change our lives drastically, especially with cases that go undiagnosed for a long time, or that hang on through months or years of treatment. Highly ambitious, highly active people might find themselves bedridden and unable to support themselves. I went from teaching full-time and skiing steep and deep terrain to living with my parents, barely able to climb a flight of stairs or read a paragraph. Unable to work or do the activities I loved, I began to question my purpose—even my very identity.

Here’s what I ultimately learned: my job and my capabilities only defined me if I let them. Of course, you feel sad, angry, and frustrated by the ways illness is holding you back. But ask yourself, besides skill, what did you bring to your job or activities? Was it a gregarious personality? An optimistic outlook? A sense of humor? Those qualities make up who you are at your core. I realized I could still lend a compassionate ear to a friend, find the humor in a ridiculous situation, or hold on to faith that things would get better, even when I was at my sickest.

It took many years of treatment, a shattering relapse, and many lifestyle changes for me to reach the state of remission I’ve now enjoyed for over a decade. Despite minor flare-ups, I have gotten better and better each year, able to do more and more. Am I back to my old life? No. But I’ve brought my old self into my new life—which includes working part-time, skiing, and living independently. I still lend a compassionate ear to a friend, find the humor in a ridiculous situation, and hold on to faith that things will get better. I’d argue that I love my core self even more for all that she’s survived, and for the vibrant new normal that she’s created.

You ask how to forgive yourself—and to that I must reply, for what? Now, this is a bit like the pot calling the kettle black, because I spent years blaming myself for my illness, beating myself up for not taking better care of myself, going over and over and over what I could or should or would have done. But I didn’t cause my illnesses; a tick did. I didn’t cause my symptoms; pathogens did. Are there ways I could have better cared for myself, or times when I took my frustration out on others that I feel badly about? Sure. But I’m human. We are all works in progress. I believe that extending compassion and grace to myself has allowed me to accept illness and its effects as just parts of my life—not the definition of who I am.

It may help to write about who you are at your core: what makes you who you are? How can you bring those qualities into your new, evolving life? You might also try writing a love letter to yourself, or even to your illness. Finally, it may be helpful do some cognitive behavioral therapy with a therapist who understands tick-borne illness.

Did you start to have a temper with your memory problems?

Before Lyme disease, ehrlichiosis, babesiosis, and possible bartonella ravaged my brain, my memory was incredibly sharp. Thankfully, I still have a very strong long-term memory, which certainly helped as I was writing my memoir. But my short-term memory was affected by tick-borne illness, and that has been incredibly frustrating. If you find yourself getting upset when you can’t remember someone’s name, or yelling at yourself when you pour orange juice on your cereal, know that you are not alone. It’s normal to get mad when an illness is robbing you of what you know to be your normal capacity.

It’s also important to know that tick-borne diseases can cause psychiatric manifestations, including angry outbursts. If you’re feeling short-tempered, it may be a reaction to symptoms, but it also may be a symptom in and of itself. Finally, you must remember that fighting tick-borne illness takes a lot of energy, meaning you have none left over when something small but frustrating happens. This can cause what some people refer to as “Lyme rage,” that is, having an immediate temper flare over something that otherwise wouldn’t rattle you.

There’s no shame in talking to your LLMD about temper flares; your doctor may be able to alter your medications to help you. It also may help to see a Lyme Literate psychiatrist, and/or to talk to a therapist to figure out good coping skills when your temper does flare. Each of these steps helped me. My memory issues have improved as my tick-borne illnesses have abated. I still have moments of extreme frustration, but they’re fewer and farther between. With the right support, things can get better!

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Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

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It’s a frightening thing to suddenly forget words or why you are standing in a room.  Lyme/MSIDS does a number on you in virtually every way possible.  Finding support during this time helps keep sanity.  Just knowing others struggle with similar things is cathartic and gives you hope for recovery.  I’m happy to report that after 5 years of treatment and a few relapses I have my cognitive capabilities back and no longer struggle with them.

Lyme & Headaches: Natural Relief for the 5 Most Common Causes

https://rawlsmd.com/health-articles/lyme-headaches-natural-relief-for-the-5-most-common-causes

by Jenny Menzel, H.C.
Posted 3/17/22

Take a look at just about every ailment in medical literature, and there’s a good chance you’ll see “headache” listed as a possible symptom, but not all headaches are a result of underlying illness. Most people who get occasional headaches will pop an over-the-counter pain reliever and carry on, but it’s not always that simple for those battling chronic Lyme disease.

Lyme-induced headaches can be constant and debilitating, disrupting everyday tasks that can often be taken for granted — like walking the dog, making breakfast for the kids, or going to work. These symptoms can be so severe that getting out of bed to shower might be the day’s largest accomplishment, with modern headache medicine often unable to supply relief.

old age, health problem, vision and people concept - close up of Asian senior woman  sitting on sofa and having headache at home.She may had Headache Symptoms.She looks pain  and sick

Approximately 80% of children and 50% of adults get Lyme-related headaches, with roughly 17% experiencing at least moderate migraines. Many continue suffering through the pain for months to years with little reprieve. Plus, added to the emotional stress of managing chronic headache pain is the maze of trying to figure out what triggered it in the first place.

So why does Lyme disease cause headaches? And what can you do to find lasting relief? If you’ve been struggling for a while with Lyme and the headaches that often accompany this complex illness, consider whether the following might be contributing factors for you. Although some people might stumble upon a quick fix, that’s probably not the norm for most, so you may have to be persistent in your healing efforts before noticing changes.

5 Lyme Headache Causes and Solutions

various microbes icons

Cause 1: Untreated Microbes

A common misperception about microbes is that they’re generally bad and should be killed. However, our bodies house trillions of helpful microorganisms, which outnumber our own cells by about 10 to 1 and account for up to 3% of our body weight. They’re essential to maintaining homeostasis and balancing our body’s microbiome.

But this balance can be upset when Borrelia burgdorferi, the bacteria that causes Lyme, and coinfections, including bartonella, babesia, and mycoplasma, among others, proliferate throughout the body. The result? They may entrench themselves into places like the brain, kicking up a storm of headache-causing neuroinflammation as the body tries its best to corral the stealth pathogens.

herbal supplement bottle and capsule icon

Solution: Suppress Microbes with Antimicrobial Herbs

To make some progress, you may need to focus on long-term ways to suppress harmful microbes. Herbal antimicrobials may not be as potent outright as traditional antibiotics, but they can combat bacteria over an extended period of time without disrupting the microbiome or the toxicity that can come with aggressive drug therapies. Herbs also boost immunity and tame inflammation — typically not something antibiotics have a flair for. Top herbal choices include:

  • Andrographis: Andrographis has a longstanding history of medicinal use in India, and it contains antibacterial, antiviral, and antiparasitic properties. It also has immune-enhancing, cardioprotective, and liver-protective qualities.
  • Cat’s claw: Native to the Amazon region, cat’s claw contains antimicrobial properties and is a foundational herb in most Lyme disease protocols. Additionally, it has immune-modulating and anti-inflammatory qualities.
  • Japanese knotweed: Japanese knotweed with resveratrol has been used for centuries in traditional Asian medicine, and it’s a potent antioxidant with antimicrobial and anti-inflammatory properties. The herb may also assist in combating bartonella.
  • Chinese skullcap: As a multi-purpose herb, Chinese skullcap has antimicrobial properties, decreases cytokines, and supports immunity. It works well with other herbal remedies to enhance their effectiveness.
  • Sarsaparilla: The root of sarsaparilla has been used throughout the tropics for inflammatory conditions of the skin, connective tissues, and the bowel. It binds to and helps dispose of endotoxins that are released from microbes during die-off.

image split between andrographis, cats claw, japanese knotweed, chinese skullcap, and sarsaparilla

Exciting research published in Frontiers adds credence to the use of plant extracts to combat persistent infections. Japanese knotweed, in particular, offered superior protection against a wide range of microbes by busting biofilms and crossing the blood-brain barrier, where Lyme can impact different regions in the brain and potentially produce headaches. Other herbs that showed antimicrobial properties were black walnut, sweet wormwood, Mediterranean rockrose, and cryptolepis, and they were capable of outperforming common Lyme-fighting antibiotics like doxycycline.

If you’re new to herbal therapy, working with a well-trained, Lyme-literate practitioner or doctor can help you find the right blend of antimicrobial herbs to reduce the frequency and intensity of your Lyme headaches.

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Cause 2: Herxheimer Reactions

Herxheimer reactions (usually referred to as a herx or herxing) can occur within days of starting or increasing dosages in your Lyme protocol. And while plant-based antimicrobials are gentler on the body than antibiotics, they still effectively kill bacteria, which means they’re not exempt from causing herx reactions, including headaches, due to pathogenic die-off.

When these microscopic bugs are attacked and killed, pieces of dead bacteria called endotoxins can create an inflammatory autoimmune-like response. If you find your headaches increase after introducing any form of antimicrobial agents to your system, it may be a sign that you’re not expelling endotoxins fast enough.

icon of water drop with circling arrow

Solution: Detoxify Your Body

Getting your organs of elimination (colon, skin, liver, kidneys, lymph, and lungs) opened up and operating optimally is at the core of minimizing herx reactions, and there are many ways to detox and expel inflammatory endotoxins to improve head pain:

Clean Your Pipes

Constipation is a sign of hampered digestion, keeping toxins stuck in your body and recirculating when they need to get out. Eating a whole-food diet full of fibrous fruits and veggies supports a healthy gut microbiome and increases your ability to export toxins. If diet alone isn’t doing the trick, natural remedies like castor oil packs on the belly, professional colonics, or supplementing with magnesium may keep things flowing.

Sweat It Out

Sweating through your body’s largest elimination organ, the skin, is imperative to ejecting toxins. Exercise is a great way to induce sweat but not necessarily when you’re in the throes of a Lyme headache or migraine. If you’re feeling too depleted for exercise, far-infrared (FIR) saunas, red light therapy, or heating pads can raise your body temperature and spark a toxin-removing sweat session while honoring your need for rest.

Support Your Liver

Your liver works hard to filter toxic waste from the blood and breakdown harmful substances in the body — support it with N-acetyl cysteine (NAC), a valuable antioxidant and glutathione precursor which helps reduce inflammatory cytokines, protect nerve tissues, and combat the toxins that may trigger migraines. One study found that NAC helps reduce the frequency of monthly headaches when combined with vitamins C and E as a preventative measure.

Manage Your Lymph Fluid

Much like the circulatory system carries nutrient-rich blood into our cells for nourishment, the lymphatic system has a similar network of vessels that carries waste away from those same cells, helping us stay healthy by fighting infection. However, there’s one major difference: Our hearts automatically pump blood, whereas our lymphatic system has no such pump and requires the action of your muscles and respiratory system to keep it moving. Manage your lymph fluid by exercising, dry brushing your skin, and adequately hydrating to help your body remove toxic waste.

Be Mindful of Your Breath

Deep breathing has displayed a number of detoxifying effects on the body by reducing stress and circulating lymph. Evidence also shows deep breathing can alter the perception of pain by modulating the sympathetic nervous system through relaxation. A breathing technique that can help your body’s ability to rest and digest is the down-regulated breath, which involves slowing your breathing down to four breaths (or less) per minute.

How to practice down-regulated breathing: In a seated or resting position, slowly inhale through your nose for a count of eight, raising your belly and then your lungs. Hold for a bit at the top of the breath. Then, exhale through your nose while deflating your belly and lungs for a count of eight.

Practice this for a few rounds until you feel yourself relaxing. Because of the strong parasympathetic response, this breath is best done after a meal, before bed, or any time you feel anxious (never while driving). It may take time to reach a full eight counts on each inhale and exhale, but with practice, you’ll find your rhythm.

icon of fork and knife

Cause 3: Food Sensitivities

True food allergies and intolerances are hard to miss and can even be life-threatening in some cases. But for many with Lyme, subtle food sensitivities form slowly and go undetected as a result of leaky gut syndrome — an inflammatory condition caused by intestinal permeability, usually due to long-lived gut imbalances from infections, prolonged antibiotic use, poor diet, and stress. Indeed, many people can pinpoint specific foods that bring on headaches and migraines, but what can be done about it?

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Solution: Work on Gut Health

While nixing the offending foods should be at the top of the to-do list to minimize headaches, healing your gut is also a priority so that you don’t have to avoid these foods forever. Demulcent herbs like slippery elm can rebuild the mucosa in your gut lining, while digestive enzymes aid in breaking down the food you eat. The abundant amino acid L-glutamine shows ample ability to increase the tight junction proteins needed for a strong intestinal wall. Additionally, bitter herbs like dandelion and burdock will also take a load off the liver to assist digestion.

icon of two different pills

Cause 4: Medications

Headaches are a side effect of some antibiotics. Those with chronic Lyme disease have often tried a range of antibiotic interventions, making it difficult to tell if the headaches stem from medication use or the illness itself. What’s more, in an effort to cope with head pain or migraines, the overuse of certain pain-relieving medications often end up doing the opposite of their intended design: Instead of alleviating headaches, they wind up causing them.

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Solution: Seek Natural Pain Relief

Magnesium

Research suggests that different forms of magnesium, the crucial mineral responsible for over 300 biochemical reactions in the body, has promising potential for migraine relief, with intravenous (IV) magnesium sulphate offering the most impressive results. But if IV magnesium isn’t realistic every time you have a Lyme-related headache, supplementing it may be beneficial for you. However, not all magnesium is created equal. For example, inexpensive magnesium oxide isn’t readily absorbed by the body and may cause loose stools and stomach upset. Instead, opt for such bioavailable forms as magnesium glycinate or liposomal magnesium, the form of the mineral most able to cross the blood-brain barrier.

Biofeedback

Biofeedback is a non-invasive way to gain greater awareness and control over certain body functions, and it’s proven itself as a useful tool to reduce migraines as well. As a matter of fact, a study published in Behavioral and Brain Functions found migraine frequency and symptom severity were cut in half for up to 70% in the study participants.

The average sustained results lasted around 14.5 months after therapies were discontinued — and one of three biofeedback therapies used in the trial, hemoencephalography (HEG), was considered to be a superior migraine management tool compared to other biofeedback options. Plus, when administered by a trained professional (like a healthcare provider), most insurance carriers often cover biofeedback sessions.

Curcumin

This primary anti-inflammatory compound found in the spice turmeric has been attributed to providing potent pain relief, according to one study in the International Journal of Preventive Medicine. Curcumin has proven its power to reduce the severity, frequency, and duration of headache and migraine symptoms by targeting the same NF-kB and COX pathways as aspirin and ibuprofen, thereby regulating pain and inflammation known to cause migraine headaches.

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Cause 5: Chronic Stress

It’s a safe bet that if we were to dig to the root of all illness, some form of physical, mental, or emotional stress could be found. In fact, according to a study published in The Journal of Headache and Pain, perceived stress is the most common trigger of chronic migraines. There are proven ways to modulate our body’s stress response, but finding the methods that work best for you is what matters most — as it should be something you can maintain long enough to experience the benefits.

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Solution: Calm Your Nervous System

Learning to self-soothe in stressful situations can go a long way toward curbing headaches. However, if you feel like you’ve tried everything to get rid of them, get back to the basics with a stress-reducing, mind-body practice, where you can be in control. But don’t let this be one more thing on your to-do list that stresses you out, too. Keep it simple by choosing one practice you feel curious about, start slow, and be consistent. Some mind-body options to consider include:

Managing these five causes can go a long way toward warding off future headaches and migraines caused by Lyme (and life). And while it may seem overwhelming to keep up with it all, investing time and effort into just a few of these solutions will eventually pay off. Keep at it, even if relief isn’t felt overnight. It can and often does get better.

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.

You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.

REFERENCES
1. Busch V, Magerl W, Kern U, Haas J, Hajak G, Eichhammer P. The effect of deep and slow breathing on pain perception, autonomic activity, and mood processing–an experimental study. Pain Med. 2012;13(2):215-228. doi: 10.1111/j.1526-4637.2011.01243.x
2. Donta ST. Issues in the diagnosis and treatment of lyme disease. Open Neurol J. 2012;6:140-145. doi: 10.2174/1874205X01206010140
3. Feng J, Leone J, Schweig S, Zhang Y. Evaluation of natural and botanical medicines for activity against growing and non-growing forms of B. Burgdorferi. Frontiers in Medicine. 2020;7. doi: 10.3389/fmed.2020.00006
4. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of lyme disease. New England Journal of Medicine. 1990;323(21):1438-1444. doi: 10.1056/nejm199011223232102
5. Moon HJ, Seo JG, Park SP. Perceived stress in patients with migraine: a case-control study. J Headache Pain. 2017;18(1):73. doi: 10.1186/s10194-017-0780-8
6. Naik GS, Gaur GS, Pal GK. Effect of Modified Slow Breathing Exercise on Perceived Stress and Basal Cardiovascular Parameters. Int J Yoga. 2018;11(1):53-58. doi: 10.4103/ijoy.IJOY_41_16
7. Rao R, Samak G. Role of Glutamine in Protection of Intestinal Epithelial Tight Junctions. J Epithel Biol Pharmacol. 2012;5(Suppl 1-M7):47-54. doi: 10.2174/1875044301205010047
8. Rebman AW, Bechtold KT, Yang T, et al. The clinical, symptom, and quality-of-life characterization of a well-defined group of patients with Posttreatment Lyme disease syndrome. Frontiers in Medicine. 2017;4. doi: 10.3389/fmed.2017.00224
9. Visser EJ, Drummond PD, Lee-Visser JLA. Reduction in Migraine and Headache Frequency and Intensity With Combined Antioxidant Prophylaxis (N-acetylcysteine, Vitamin E, and Vitamin C): A Randomized Sham-Controlled Pilot Study. Pain Pract. 2020;20(7):737-747. doi: 10.1111/papr.12902
10. Yablon LA, Mauskop A. Magnesium in headache. In: Vink R, Nechifor M, editors. Magnesium in the Central Nervous System [Internet]. Adelaide (AU): University of Adelaide Press; 2011. Available from: https://www.ncbi.nlm.nih.gov/books/NBK507271/

Ozone Therapy as the Ultimate Detox Method: Connections to Herxheimer Reactions & More

https://holtorfmed.com/articles/lyme-disease/herxheimer-reaction-and-ozone-therapy-what-to-know

Herxheimer Reaction & Ozone Therapy: What to Know

The Connection Between Ozone Therapy & a Herxheimer Reaction

Ozone Therapy is a whole-body healing treatment that is often a core component of an integrative medical plan for those dealing with chronic infections Lyme disease or are immunocompromised.

This is because all pathogens die in the presence of oxygen, making Ozone Therapy a potent anti-inflammatory, anti-bacterial, and anti-viral.

Ozone Therapy works by introducing ozone into the bloodstream, typically through an IV. Ozone, which consists of three oxygen atoms bound together and is nicknamed a “supercharged” form of oxygen, then encourages bio-rejuvenation.

This process is associated with numerous potential benefits including:

  • Stimulating the immune system
  • Improving detoxification
  • Increasing circulation
  • Enhancing energy levels
  • Reversing signs of aging

Learn more about the benefits of Ozone Therapy here

One of the reasons Ozone Therapy has become increasingly popular over the past couple of years is because it is known to have very few side effects. In preventative care, it is an excellent way to boost the body’s natural defenses and overall health. For those with chronic conditions such as Lyme disease, it is an effective way to kill viruses, bacteria, yeast, and those hard-to-treat, resistant pathogens.

However, when the body’s detoxification pathways receive a boost from Ozone Therapy to remove such resistant pathogens, there can be a temporary side effect known as a Herxheimer Reaction.

What Is A Herxheimer Reaction?

The Herxheimer response is a natural bodily process triggered by a greater prevalence of endotoxins. These substances are released when harmful microorganisms and bacteria are destroyed or die off. As damaging bacteria are destroyed, they release previously contained endotoxins into the bloodstream. This allows the toxins to be transported to the appropriate system and subsequently expelled from the body. However, rapid destruction of bacteria can cause an influx of endotoxins resulting in greater toxicity.

When this occurs, the immune system responds by triggering an acute immune response resulting in inflammation that may be experienced throughout the body. This can cause worsening of current symptoms and the development of new flu-like symptoms such as brain fog, lethargy, chills cold sweats, sore throat, muscle pain, and more.

Most Herxheimer Reactions after Ozone Therapy only last a couple days to a week but those who are dealing with the intense detoxification of endotoxins may endure symptoms for longer.

Other Causes of Herxheimer Reactions

The Herxheimer Reaction was orginally documented by Austrian dermatologist, Adolf Jarisch, in 1895 in relation to the treatment of mercury poisoning.

However, seven years after, Jarisch’s publication, Karl Herxheimer documented his own description of the reaction in treating syphilis and this publication gained more popularity, hence why the name, Herxheimer Reaction. (Some describe the reaction as a Jarisch-Herxheimer Reaction to honor Jarisch’s work).

In addition to mercury poisoning and syphilis, a Herxheimer Reaction can also be caused by:

  • Autoimmune diseases such as Rheumatoid Arthritis
  • HIV/AIDS
  • Lyme disease
  • Co-infections
  • Antibiotics
Reducing a Herxheimer Reaction

Even though a Herxheimer reaction indicates that treatment is working effectively, it doesn’t make the patient’s condition any more comfortable in the immediate. Fortunately, there are many ways of limiting the symptomatic impact of a Herxheimer reaction without inhibiting treatment efficacy. The following suggestions can and should be used when detoxing, using antibiotics, or being treated for infections and other forms of chronic disease to limit Herxheimer intensity.

To learn how to relieve the symptoms of a Herxheimer Reaction, click here.

To book your Ozone Therapy appointment and enjoy this whole-body healing service, contact us today.


Holtorf Medical GroupThe Holtorf Medical Group specializes in optimizing quality of life and being medical detectives to uncover the underlying cause of symptoms, rather than just prescribing medications to cover-up the symptoms. We are experts in natural, prescription bioidentical hormone replacement and optimization, complex endocrine dysfunction, fibromyalgia, chronic fatigue syndrome and Lyme disease. We’ve dedicated our practice to providing you the best in evidenced-based, integrative medicine that’s not only safe and effective, but provides measurable results.

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The True Cost of Lyme Treatment

https://www.globallymealliance.org/blog/cost-of-treatment

Patients with Lyme disease not only suffer from debilitating symptoms, but also have to pay enormous amounts in medical bills. This blog discusses the financial impact of having Lyme on individuals and their families.  

Lyme disease can take an incredible toll on patients and families. Beyond feeling physically sick—wrestling with symptoms ranging from fatigue, to joint pain, to neurological manifestations—there are emotional, psychological, and financial costs that come with a diagnosis of Lyme. If the patient is lucky enough to get treated right away for early localized Lyme disease, these effects may only impact them for a few short weeks.

But for many Lyme disease patients, the story is not as simple. Roughly 40% aren’t diagnosed until a later stage of the disease [i], and 10-20% of those who are diagnosed early go on to experience persistent symptoms. Many of these people also have other tick-borne diseases, so the road to the recovery is long and circuitous. In these cases, patients can suffer for years, and the financial impact can be severe.

Research by the Johns Hopkins University Bloomberg School of Public Health found that Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year [I]. Despite these staggering numbers, some Lyme disease patients find themselves shelling out their life savings to cover medical costs. Part of the problem is that long term antibiotic treatment is often not covered by insurance (for more information on this issue, please see “Why Isn’t My Lyme Disease Treatment Covered by Insurance?”). Because of this quagmire, many Lyme Literate Medical Doctors (LLMDs) don’t take insurance, so patients need to pay out-of-pocket and hope for some level of reimbursement. Then there’s the cost of adjunct therapies, supplements, and alternative treatments, most of which are also not covered by insurance. A recent Business Insider article tells the story of one Lyme disease patient who paid $100,000 out-of-pocket over a three-year period. Unfortunately, her plight is all too common.

These costs can be especially difficult to cover when patients are too sick to work. In a 2015 lymedisease.org study of more than 6,000 chronic Lyme disease patients, 42% reported having to quit or cut back on work. Less than half of that number reported receiving disability at some point. Losing the ability to provide for oneself or one’s family—and in many cases having to depend on family or friends while sick—can be a real blow to a patient’s sense of self-worth. Moreover, loss of finances can negatively affect relationships. “Active and upbeat people lose the capacity to perform their jobs; athletes lose their ability to play sports for recreation or profession; the emotional turmoil within family life roils to the point of divorce or separation as the Lyme victim—and in many families, more than one person is afflicted—stresses the climate of the household with constant symptoms, financial demands, and psychological changes that boomerang throughout both immediate family and extended relationships,” [iv] write Denise Lang and Kenneth Leigner, M.D. in their book Coping With Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment.

In spite of the bleak reality of the costs of Lyme disease, there are resources available to help alleviate the burden. Many foundations offer financial assistance for people with Lyme disease. For example, the Lymelight Foundation provides grants for treatment and medication for people up to 25 years of age, while Ride Out Lyme and Ticked Off Foundation provide grants for adults ages 26 and older. And those are just a few of the many resources available; check out GLA’s detailed list. Lyme is expensive, but help is available!

[i] Bobe, Jutras, B. L., Horn, E. J., Embers, M. E., Bailey, A., Moritz, R. L., Zhang, Y., Soloski, M. J., Ostfeld, R. S., Marconi, R. T., Aucott, J., Ma’ayan, A., Keesing, F., Lewis, K., Ben Mamoun, C., Rebman, A. W., McClune, M. E., Breitschwerdt, E. B., Reddy, P. J., … Fallon, B. A. (2021). Recent Progress in Lyme Disease and Remaining Challenges. Frontiers in Medicine, 8, 666554–666554. https://doi.org/10.3389/fmed.2021.666554

[ii] https://publichealth.jhu.edu/2015/lyme-disease-costs-more-than-one-billion-dollars-per-year-to-treat-study-finds

[iii] Zhang, X., et al., Economic impact of Lyme disease. Emerg Infect Dis, 2006. 12(4): p. 653-60

[iv] Lang, Denise with Liegner, Kenneth, M.D. Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment. New York: Henry Holt and Company, 2004 (21-22).

Global Lyme Alliance
Admin at Global Lyme Alliance

Global Lyme Alliance

Email: info@globallymealliance.org

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**Comment**

Digging back a number of years, I estimated we were spending approximately $15K per person per year for Lyme/MSIDS treatment. I’m sure it’s increased by now. We only tested once so saved money on testing.  We also utilized mainly antibiotics which are fairly inexpensive as a rule.  I also planned ahead and used Canadian pharmacies which are much cheaper for the more expensive drugs.  You need to allot about a month when you do this as the drugs often come from India and take longer to get.  Herbal treatments (which we’ve also used) are approximately $280-$300 per month unless you buy the ground herbs in bulk and either swig them down or make your own capsules.  So “natural” options aren’t cheaper.  We also used IV blood ozone ($100-$170 per time) and required many supplements (and still do). 

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Besides the staggering financial cost to this 21st century plague, this paper, based on estimates of treatment failure rates associated with early and late Lyme, estimates that 35-50% of those who contract Lyme will develop persistent or chronic disease.

Let that sink in.

And in the Hopkins study found 63% developed late/chronic Lyme symptoms.

For some time I’ve been rankled by the repeated CDC statement that only 10-20% of patents go on to develop chronic symptoms.  This mantra in turn is then repeated by everyone else.

While still an estimate, I’d say 35 to over 60% is a tad higher than 10-20%, wouldn’t you?  It also better reflects the patient group I deal with on a daily basis.  I can tell you this – it’s a far greater number than imagined and is only going to worsen.

Time for every number on the CDC website to be adjusted.

Lyme Disease Call to Action

https://www.truthcures.org/post/call-to-action

Call to Action

By Laura Hovind, TRUTHCURES

Are you looking for a way you can help spread Lyme disease awareness this month? Look no further!

TRUTHCURES has made significant progress in proving that Lyme diagnostics have not been valid for 27 years. This has caused immense suffering due to missed diagnoses and denial of care. We met with FDA investigators in person on October 18, 2021. We told them they have a responsibility to protect the public by recalling every Lyme disease test currently on the market by way of FDA clearance.

The FDA has confirmed there is an open investigation but they are withholding all other information. Therefore we have asked our U.S. Senators for assistance. The most likely path forward is a hearing of the Senate Health, Education, Labor & Pensions (HELP) Committee. Support among the other members, and especially the Committee Chair (Patty Murray-WA) and Ranking Member (Richard Burr-NC) is critical to obtain a hearing.

If you are a constituent of any of the Senate HELP Committee members, please contact them immediately. See the list here, and click through for their contact information.

Tell them:
  • I am requesting Senator _______’s support for a HELP Committee hearing on faulty Lyme disease diagnostics. The issue has been forwarded to the Committee by Senator Ed Markey’s office, and Senator Roger Marshall’s office can provide details.

  • The FDA last October was given data proving that there is not a single valid FDA-cleared Lyme disease test. There hasn’t been one for 27 years because the diagnostic standard was manipulated by corporate interests and then perpetuated by the FDA’s 510(k) clearance pathway. Refer to our press release and feel free to forward it. Six months after our meeting the FDA is supposedly investigating but has done nothing to rectify the problem, and seem to be withholding information. Meanwhile, we are kicking off another horrendous tick season.

  • If you need guidance, additional information, or our contact info to pass along, please email Laura at truth@truthcures.org. I am happy to speak with your elected representatives and their staffers if they would like firsthand information. We can also connect them with our Senators’ staffers who are working on this issue.

Thank you, and happy May!

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**Comment**

Senator Tammy Baldwin is on this committee representing Wisconsin. 

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