Archive for the ‘Treatment’ Category

PCOS: A Mysterious Disease

https://www.womensinternational.com/portfolio-items/polycystic-ovary-syndrome-pcos/

PCOS: A Mysterious Disease

Polycystic ovary syndrome (PCOS) is a hormone-related condition that affects millions of women. This condition is also known as Stein-Leventhal syndrome (after the doctors who discovered it more than 80 years ago), Anovulatory Androgen Excess (AAE), or polycystic ovary disease. If left untreated, PCOS can lead to more far-reaching health concerns, such as diabetes, heart disease, and endometrial cancer.

Though “polycystic ovary syndrome” implies that the predominant symptom is ovarian cysts, PCOS is really a hormone imbalance characterized by an overabundance of androgens and resistance to insulin. PCOS is the most prevalent hormone imbalance in women under the age of 50. Estimates suggest that between 4-8% of the female reproductive population may have PCOS, yet most cases are presumed to be undiagnosed.

As mentioned previously, the name “polycystic ovary syndrome” is misleading because PCOS can occur with or without ovarian cysts. Even the presence of ovarian cysts does not necessarily mean that they are caused by PCOS. The cysts associated with PCOS are actually eggs that do not get released from the ovary because of abnormal hormone levels.

In most cases, PCOS starts during adolescence or even pre-puberty. Because the symptoms take a long time to develop, however, it may not be detected until women are in their late 20s or 30s.

Infertility is closely connected to PCOS: infertility is the primary clue that leads to most diagnoses of PCOS and PCOS is one of the most common causes of infertility. In addition to infertility, the more obvious symptoms of PCOS include menstrual abnormalities, acne, unwanted facial hair, and unexplained weight gain. Symptoms vary widely from one woman to the next; for instance, some women with PCOS retain fluids and hold body fat, whereas others are slender. Tumors and increased risk of cancers may also be associated with PCOS, but they are rare.

Considering the myriad symptoms of PCOS, medical professionals still debate how to define and diagnose it. The primary consensus seems to be that women with PCOS:

  • Do not ovulate in a predictable manner
  • Produce excessive quantities of androgens, particularly testosterone and/or dehydroepiandrosterone (DHEA)
  • Are insulin-resistant
Dr. Jerilynn Prior asserts that the most common cause of PCOS is not actually cysts on the ovaries, but rather ovulation dysfunction and/or disturbance and subsequent lack of progesterone.

What are Androgens?

Androgens are steroid hormones vital to physical and sexual development. They are secreted by the adrenal glands and are also produced by the nervous system, including nerve cells in the brain, spinal cord, and the peripheral nervous system. Other tissues may also produce androgens, such as cells found in the liver, skin, and hair, and by the ovaries in women.

Androgens affect every aspect of our bodies in some way. They are necessary for the functioning of the liver and blood cells, nourishing the bones, and creating muscle mass. Because they are used for muscle development—and muscles burn fat—androgens are critical to weight management.

Patients with PCOS tend to have elevated levels of androgens. Imbalances of other hormones are also common, further contributing to PCOS symptoms:

  • High levels of androgens, specifically testosterone, androstenedione, DHEA, and DHEA-sulfate (DHEA-S)
  • High estrone levels, though their estradiol level is usually within the normal range
  • Low thyroid levels
  • High or low cortisol levels
  • High insulin levels

What are the Symptoms?

For many women, PCOS is a lifelong disease, with symptoms appearing in adolescence and persisting through the reproductive years and into menopause. While some women with PCOS may develop cysts on their ovaries as the name suggests, the most prevalent indicators of PCOS and other androgen disorders fall into one of three general categories: changes in appearance, menstrual abnormalities, and metabolic or systemic disorders.

Examples of Changes in Appearance

  • Acne and skin problems
  • Hirsutism (excessive hair on the face, chest, abdomen, and other parts of the body)
  • Unexplained weight gain or fluid retention

Examples of Menstrual Abnormalities

  • Severe menstrual pain
  • Amenorrhea (absence of menstruation)
  • Oligomenorrhea (infrequent periods, possibly coupled with infertility if the woman has tried and been unable to become pregnant)

Examples of Metabolic or Systemic Disorders

  • Infertility or reduced fertility
  • Diabetes or insulin resistance
  • Obesity
  • Hypertension
  • Heart disease
  • Hyperlipidemia (elevated cholesterol)
  • Endometrial cancer
  • Ovarian cancer
  • Breast cancer

Because sensitivities to excess androgen vary considerably, symptoms can differ dramatically from one woman to the next. In general, symptoms cluster according to life stages:

  • Pre-puberty: weight gain, early puberty or menarche, acne, high blood pressure
  • Adolescence: irregular periods, obesity, acne, hirsutism
  • Reproductive years: infertility, gestational diabetes, preeclampsia
  • Perimenopause: diabetes, obesity, stroke, heart disease, cancer

Unfortunately, many women who suffer from the symptoms of PCOS don’t seek medical treatment. They may be embarrassed, or the symptoms may seem trivial and unrelated. Many of the symptoms might be perceived as awkward phases of development, reactions to stress or lifestyle choices, or concerns about imperfect physical appearance.

For those who do seek treatment, doctors often misinterpret their symptoms as being connected to some other cause. Changes in appearance may be categorized as cosmetic (and therefore not covered by insurance). For instance, some women may remedy excess hair with laser treatments rather than consulting their physician.

Possible Causes of PCOS

As of this writing, the exact cause of PCOS is still a mystery. However, several theories have been suggested by various researchers:

Defects in the Endocrine System

One theory suggests that PCOS may be due to a defect in the endocrine system, affecting the hypothalamus and/or the pituitary glands. In this scenario, the production of either gonadotropin-releasing hormone (GnRH) or luteinizing hormone (LH) is elevated. Dr. Prior concludes that it is not simply high levels of LH, but the rate of its pulsing that has gone awry. This increased rate overstimulates the ovaries and results in excess androgen production, which disrupts the normal menstruation cycle.

Lack of Ovulation

Dr. Jeffrey Dach suggests that PCOS results from the body’s failure to ovulate. Without ovulation, progesterone is not produced. Because ovulation cannot take place without progesterone, this perpetuates a cycle, as ovulation will not occur without progesterone and leads to increased testosterone production by the ovaries.

Scar Tissue from Iodine Deficiency

According to Dr. Jorge Flechas, PCOS is a scar tissue disease caused by a lack of iodine. He suggests that low iodine levels are responsible for the production of cysts, nodules, growths, and scar tissue. Iodine deficiency is the cause of such diseased tissues no matter where they occur in the body.

Environmental and Chemical Exposures

Dr. John R. Lee’s theory points to xenobiotics: chemical compounds such as drugs, environmental pollutants, and carcinogens that are foreign to a living organism. Xenobiotics can disrupt hormone function and can also alter the development of fetal tissue. During the development of a female embryo, between 500 and 800 thousand follicles are created, each containing an immature ovum.

Dr. Lee reports that studies show “the creation of ovarian follicles during this embryo stage is exquisitely sensitive to the toxicity of xenobiotics.” One example of harmful chemical exposure is Bisphenol A (BPA), which is found everywhere from plastics to the lining of canned foods and even paper receipts. BPA may alter estrogen receptor proteins, leading to ovarian difficulties.

While a pregnant woman exposed to such chemicals may be unaffected, her baby “is far more susceptible, and these chemicals may damage a female embryo’s ovarian follicles and make them dysfunctional; unable to complete ovulation or manufacture sufficient progesterone.” This damage may not be apparent until after puberty, and even then may exhibit in a wide variety of symptoms.

Insulin Resistance

Another theory is that insulin resistance may set off a chain reaction that throws the hormones out of balance. Medical research suggests that when insulin levels in the blood are high, the ovaries may be stimulated to produce more testosterone. However, PCOS appears to be unique in that, independent of body weight, excessive insulin production is coupled with insulin resistance.

Dr. Sara Gottfried thinks that PCOS is connected to insulin, noting that the risk of Type II diabetes rises by approximately 80% if cysts are present (whereas it increases by only 50% with high androgen levels alone). In The Hormone Cure, she explains that high insulin levels cause the ovaries to produce excessive amounts of androgens, and also cause the liver to produce less sex hormone binding globulin (SHBG), resulting in even more free testosterone. She also notes that insulin resistance increases aromatase, which converts testosterone to estradiol, thereby setting the stage for estrogen dominance and lack of ovulation.

Genetics and Other Possible Causes

Dr. Gottfried suggests that genetics, chronic stress resulting in an excess of DHEA, and excess body fat (especially around the midsection) may all contribute to PCOS. Another possible cause is obesity, which itself typically causes insulin levels to rise. Approximately 50% of women with PCOS have excess body fat, and women with a high waist-to-hip ratio (i.e., apple-shaped figures as opposed to pear-shaped figures) are more likely to have some ovarian dysfunction.

What Goes Wrong?

When functioning normally, the hypothalamus gland acts as a control center in the brain, monitoring hormone levels and regulating the menstrual cycle. During a normal menstrual cycle, the hypothalamus secretes gonadotropin-releasing hormone (GnRH), which stimulates the pituitary gland to release follicle-stimulating hormone (FSH) and luteinizing hormone (LH). In proper proportions, these hormones act on the ovaries to start producing estrogen (mostly estradiol), and stimulate the maturation of eggs.

In a normal ovary, a single egg is released each cycle. The first follicle that ovulates releases its egg into the fallopian tube and quickly changes into the corpus luteum. The corpus luteum produces a surge of progesterone, which simultaneously puts the uterine lining in its ripening phase and turns off further ovulation. If fertilization does not occur, the ovary stops its production of both estrogen and progesterone, and the sudden decrease in the concentrations of these hormones causes the blood-rich uterine lining to slough off, resulting in menstrual bleeding.

But what happens if a follicle does not release the egg for some reason?

If the ovary is not functioning properly and the egg is not released, the follicle may become a cyst and the normal progesterone surge does not occur. The lack of progesterone is detected by the hypothalamus, which continues to try to stimulate the ovary by increasing its production of GnRH, which in turn increases the pituitary production of LH.

An increase in pituitary hormones stimulates the ovary to produce more estrogen and androgens, which stimulates even more follicles to ovulate. If these additional follicles are also unable to release an egg and produce progesterone, the menstrual cycle is dominated by increased estrogen and androgen production, without progesterone, and multiple cysts may develop.

How is PCOS Diagnosed?

Currently, there is no single test for diagnosing PCOS. Your healthcare practitioner may perform an endoscopic exam or use a diagnostic tool such as an ultrasound to determine if your ovaries are enlarged or have cysts. A diagnosis of PCOS is more likely if the ultrasound shows something similar to “a string of pearls” although the absence of this does not discount the possibility of PCOS altogether.

Hormone testing may also be used to determine hormone levels that may be indicators of PCOS, including:

  • Elevated testosterone
  • Elevated LH
  • Normal to low follicle-stimulating hormone (FSH)
  • Elevated prolactin

High LH seems to be a good marker for PCOS. Dr. Gottfried also suggests that PCOS patients have their levels of progesterone, glucose, fasting insulin, and leptin checked.

During diagnosis, your healthcare practitioner will try to rule out other possible causes for your symptoms. One possibility is Cushing’s syndrome, a complex hormone condition characterized by excess cortisol that affects many areas of the body. Other potential diagnoses are disorders associated with the pituitary or adrenal glands, such as congenital adrenal hyperplasia (CAH), which is a genetic defect that can also lead to androgen imbalances.

What Treatments are Available?

Often PCOS has been treated with oral contraceptives, androgen suppressors, synthetic estrogens, or other drugs that block hormone production, especially the production of LH. These conventional approaches suppress the symptoms but do not address the underlying cause.  Instead of blocking hormone production, many practitioners–including Drs. John Lee, Jeffrey Dach, Jerilynn Prior, and Allen Washowsky–believe that a cyclic regimen of progesterone therapy is an obvious starting point to treating PCOS.

Dr. Lee treated his PCOS patients with a bioidentical progesterone supplement in conjunction with proper diet, adequate exercise, and stress management. He claimed that “If progesterone levels rise each month…as they are supposed to do, this maintains the normal synchronal pattern…and PCOS rarely, if ever, occurs.” (For more information, see our Connections eBook, A Lifetime of Progesterone.)

Another approach for treating PCOS is with insulin-lowering medications. For women with PCOS, it is especially important to regulate insulin production so that ovaries have a chance to function normally. Studies demonstrate a significant decline in ovarian androgen levels in PCOS patients while taking these medications.

Dr. Jason Fung proposes that the underlying mechanism of PCOS is high insulin levels or insulin resistance. Patients may find it easier to manage insulin levels by incorporating periodic fasting into their lifestyle. Dr. Fung discusses the details of various fasting plans and their potential health benefits in his book The Complete Guide to Fasting.

Insulin-based treatments work best when coupled with a healthy diet and proper exercise. Many healthcare professionals recognize that metabolic aspects influence the reproductive and dermatologic health of their patients, especially those with PCOS. For PCOS patients that are overweight, reducing their body weight by as little as 15% may significantly improve insulin sensitivity, restore ovulatory function, and reduce the effects of excess androgen.

In addition to progesterone therapy and insulin-based treatments, Dr. Gottfried believes that a holistic approach is the key to successfully treating PCOS. This approach includes lifestyle and dietary changes such as:

  • Decreasing stress by practicing yoga
  • Eating low glycemic foods
  • Eating high fiber foods (as fiber prevents recirculation of hormones from the gut as well as increases testosterone excretion)
  • Omitting sugar
  • Avoiding dairy products
  • Eating more protein
  • Using more omega-3 oils
  • Supplementing with zinc and vitamin D

Studies of a supplement called D-chiro-inositol (DCI) have yielded promising results in the treatment of PCOS. Inositol is a nutrient found in a wide variety of fruits and vegetables and is known to affect nerve function. Because it is based on inositol, DCI may play a role in the cellular function that mediates the action of insulin.

A similar nutrient to DCI is myo-inositol. A study conducted by Dr. Alfonsa Pizzo et al. compared the two in women with PCOS, and found that “myo-inositol showed the most marked effect on the metabolic profile, whereas D-chiro-inositol reduced hyperandrogenism better.” Therefore, while DCI may help PCOS symptoms related to the metabolic hormone insulin, other symptoms related to the androgenic hormone testosterone may be better regulated by myo-inositol.

PCOS in Men

There are different theories as to the cause of PCOS, and not all of them involve the ovaries. While PCOS is practically an epidemic in women, there is evidence that similar imbalances manifest in young men. According to Dr. Matthew Cavaiola, if PCOS is not caused by a defect in the ovaries, men can also suffer from this condition. Symptoms of PCOS in men include:

  • Early onset of male pattern baldness
  • Excessive body hair
  • High levels of testosterone and dihydrotestosterone
  • Insulin resistance
  • Obesity
  • These symptoms are often considered normal or inevitable body changes, but as with women, PCOS in men serves as a clue that their health is compromised. Even if PCOS symptoms are not severe, they may indicate more serious underlying conditions or health concerns. For instance, men with PCOS have an increased risk of diabetes and cardiovascular disease.

Conclusion

During the midlife changes of perimenopause, menopause, and andropause, we pay attention to the hormonal decline and how it negatively affects health and wellbeing. However, the prevalence of PCOS in young men and women is evidence that hormone imbalances can occur at any age. Fortunately, solutions are available to prevent PCOS from becoming an inevitable or lifelong condition.

While there is currently no cure for PCOS, there are several measures that can be taken to prevent or curtail its effects, starting with:

  • Adopting healthy lifestyle habits including eating, exercise, and sleeping habits
  • Addressing health concerns that may contribute to PCOS, such as reducing stress
  • Monitoring and documenting any changes in appearance (especially skin and hair), as well as any unexplained weight gain or menstrual irregularities
  • Speaking with healthcare practitioners about symptoms that might be related to PCOS

We have much to learn about PCOS, what causes it, and how to treat it. As men and women become aware of the symptoms—and bring those concerns to their doctors and other healthcare practitioners—the medical profession will continue increasing its understanding of PCOS. In the meantime, it’s possible for patients to become more proactive about their health.

References

Connections is a publication of Women’s International Pharmacy, which is dedicated to the education and management of PMS, menopause, infertility, postpartum depression, and other hormone-related conditions and therapies.

This publication is distributed with the understanding that it does not constitute medical advice for individual problems. Although this material is intended to be accurate, proper medical advice should be sought from a competent healthcare professional.

Publisher: Constance Kindschi Hegerfeld, Executive VP, Women’s International Pharmacy
Co-Editors: Michelle Violi, PharmD., Tami Haas and Laura Strommen; Women’s International Pharmacy
Writer: Carol Petersen, RPh, CNP; Women’s International Pharmacy
Illustrator: Amelia Janes, Midwest Educational Graphics

Copyright © Women’s International Pharmacy. This newsletter may be printed and photocopied for educational purposes, provided that your copy(s) include full copyright and contact information.

__________________

**Comment**

I post this article because PCOS-like symptoms were my first symptoms of Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/

While I was never diagnosed with PCOS it demonstrates that Lyme can go anywhere in the body and cause symptoms.

Scheduled to undergo surgery for an epigastric hernia, a MRI showed 2 deflating cysts. The pain was unbelievable, that I suffered with for months.  After this, my knee swelled up twice it’s normal size, was red and hot to the touch, and I developed a fever in the middle of January in Wisconsin along with seeing flashing lights along with heart palpitations, and other bizarre symptoms. I was told by the doctor I had “washer woman’s knees” from washing floors.  Problem is I use a bucket and mop….it also doesn’t explain the accompanying fever.  

I’m convinced I never got Lyme/MSIDS from a tick bite but directly from my husband. Initial symptoms all originated in the pelvic region and metastasized from there.

Since the CDC states outright Lyme is not a STD, little to no work has been done in this area to the demise of patients.

For more:  https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

https://madisonarealymesupportgroup.com/2019/05/11/lyme-found-in-genital-lesion-sexual-transmission-studies-screaming-to-be-done/

Key Quote: “The presence of live spirochetes in a genital lesion strongly suggests that sexual transmission of Lyme disease occurs,” said Middelveen. “We need to do more research to determine the risk of sexual transmission of this syphilis-like organism.”

https://madisonarealymesupportgroup.com/2018/02/06/lyme-in-the-southern-hemisphere-sexual-transmission/

https://madisonarealymesupportgroup.com/2019/04/17/is-lyme-disease-sexually-transmitted/

 

Florida Wildlife Officer With Lyme Disease Opens Up About Living With Tick-borne Illness

https://www.foxnews.com/health/florida-wildlife-officer-lyme-disease-ticks

Florida wildlife officer with Lyme disease opens up about living with tick-borne illness

When it comes to living with Lyme disease, an officer with the Florida Fish and Wildlife Conservation Commission (FWC) wasn’t afraid to be candid about how the tick-borne illness —  which he says he contracted while on the job —  has affected him.

Officer Lee Lawshe recently told local news station News4Jax about the disease he said changed his life forever.

The wildlife officer said he lived with the illness for years before he was formally diagnosed with the disease, which is primarily caused by two types of bacteria —  Borrelia burgdorferi and Borrelia mayonii — in the U.S., specifically, according to the Mayo Clinic. Lawshe received the diagnosis in 2018.

He told the news station he will live with the disease for the rest of his life due to the length of time it took to receive an official diagnosis. (Some patients who contract the disease may at first receive a negative blood test for Lyme disease, per the Centers for Disease Control and Prevention.)

KENTUCKY TODDLER’S TICK BITE LED TO RARE DISEASE, MOM WARNS: ‘I WOULDN’T WISH THIS UPON MY WORST ENEMY’

Though Lawshe told News4Jax he takes medication for the disease, there are days where he has trouble getting out of bed. Last year, he had to take half a year off of work due to the severity of his symptoms.

“It’s really just turned our lives upside down,” Lawshe told the outlet. “I used to do whatever I wanted to, whenever I wanted to.”

Lawshe spends a lot of time outdoors for his job. Some days, he will come home with numerous ticks on his body.

“I’ll go in the woods and pull 100 ticks off me. My wife sits and picks [ticks] off, 40 or 50 at a time. Do I get them all? Maybe, maybe not,” he said.

According to the Mayo Clinic, those who spend time in “grassy and heavily wooded areas” are more likely to contract Lyme disease, which is curable with antibiotics, especially if caught early.

“Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints,” the CDC added.

Early symptoms of the disease include a rash at the infected tick bite site as well as fever, chills, fatigue, headache, body ache and other flu-like symptoms, per the Mayo Clinic.

Those with Lyme disease may also later develop a rash on other areas of the body, joint pain and even neurological problems such as meningitis and numbness in the limbs. Some infected can also experience severe fatigue and eye inflammation, according to the medical facility.

In a statement to News4Jax, the FWS said it’s taking “all preventative measures including the use of enhanced repellants.”

“We stand behind our employees and will do anything we can to support them and ensure their well-being,” it added.

**Comment**
The presentations of Lyme symptoms are wide and variable – with many never getting a rash at all.  https://madisonarealymesupportgroup.com/2019/03/26/formally-challenging-cdc-advice-on-lyme-disease-rashes/  It does not take 36-48 hours of tick attachment to get Lyme:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/
Lyme is everywhere and and has been found in every single state. Telling people where Lyme is and where it isn’t has been killing people for over 40 years:
It is true that working outdoors increases your risk as well as having pets that go outdoors.  Prevention needs to be taken as seriously as a heart-attack. 
And while ticks are certainly a big part of this issue, many feel there are other routes of transmission:  https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

Lyme Disease Program At Spaulding Rehab Hospital

https://boston.cbslocal.com/remote-login.php?login=d30dd2af62b1d79d8bd519aaa754439e&id=3859903&u=faf0ad434f0f21a21ef4ec622

Dean Center Treats Long-Term Effects Of Tick-Borne Illnesses

“All of a sudden, the right side of my body was completely numb. My heart was racing. I was disoriented and I said, ‘I think you need to take me to the hospital,’” she remembered.

After the standard antibiotic treatment, Dean still didn’t feel right.

“I’d gone to 12 different specialists and they all had diagnosed me with anxiety.

She had what the Centers for Disease Control calls Post-Treatment Lyme Syndrome. She eventually found a doctor who understood her condition and recovered.

Doctors don’t always know what causes the lingering symptoms, making the diagnosis controversial and it is difficult for many patients to find help.

“There are hundreds and hundreds and hundreds of people who are severely debilitated from this disease and don’t have the access to the care that they need,” Dean said.

She and her family helped create a special program at Spaulding Rehabilitation Hospital that focuses on treating the lingering effects of tick-borne illnesses, like Lyme, including pain, fatigue, and brain fog.

“We have the ability to get them into physical therapy,” explained Dean Center co-founder, Dr. David Crandell. “If people are having problems with fatigue, we’ll work on ways to improve their efficiencies and if they’re having problems with their cognition, we’ll work with our speech and language pathologist to come up with unique management strategies.”

The Dean Center is the only one of its kind in the country and because of that, they have a long waiting list.

“I think if we’re in a position to show how these services help, hopefully, people will adopt those approaches elsewhere,” Crandell said.

In the meantime, the Dean Center is getting ready to open a pediatric Lyme disease center and the hospital hopes to expand services to treat more adults as well.

Dean continues to help raise money for the Center so more people can have access to care that she had.

“I don’t know where I could be if I hadn’t found those physicians who believed that I was really sick,” she said.

For more information on the Dean Center click here.  To make a donation click here.

___________________

**Comment**

I’m waiting on a response from from Ms. Dean on if this center as part of its treatment, prescribes long-term antimicrobials (antibiotics and/or herbals).

The “lingering” symptoms the CDC labels PTLDS in many is active infection that needs to be dealt with.  The reason this is controversial is a long, convoluted story but suffice it to say treatment failures have been noted since the very beginning of this plague and numerous animal and human studies have shown bacterial persistence.  They just don’t want to believe it because it doesn’t fit into the nice square box they’ve put it in. I stumbled on this paper hailing from Canada which does a fantastic job laying it all out:  TheCaseforthePersistenceofLymeDiseaseAfterAntibioticTherapy

Here’s a bevy of studies broken down into categories showing borrelia persistence:  Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy

So the idea that these lingering symptoms can not be caused by active infections is ludicrous. Mainstream medicine is also ignoring the polymicrobial aspect that many of us are infected with numerous pathogens which research has shown to cause more severe illness of longer duration:  https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/  Read comment after article

https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

Excerpt:

Going back to 1998, it was known that when a patient has Lyme and Babesia, Lyme is found three-times more frequently in the blood, causing greater symptoms, disease severity, and duration of illness:  https://reference.medscape.com/medline/abstract/8637139

https://madisonarealymesupportgroup.com/2017/06/28/concurrent-babesiosis-and-lyme-in-patient/  Great example of a previously healthy 39-year-old male

THE NUMBER OF SYMPTOMS AND DURATION OF ILLNESS IN PATIENTS WITH CONCURRENT LYME DISEASE AND BABESIOSIS ARE GREATER THAN IN PATIENTS WITH EITHER INFECTION ALONE

http://www.lymepa.org/c07%20Lyme%20disease%20and%20Babesiosis%20coinfection.pdf  It also suggests a synergistic inflammatory response to both a parasitemia and an increased spirochetemia. In addition, babesial infection enhances Lyme disease myocarditis in mice, which suggests that coinfection might also synergize spirochete-induced lesions in human joints, heart, and nerves.

Telling quote:

Persistent and debilitating fatigue characterized coinfection.

ANIMAL STUDIES ALSO SHOW ENHANCED SEVERITY WITH LYME & BABESIA

https://www.sciencedirect.com/science/article/abs/pii/S0020751918302406
Similar to humans, B. microti coinfection appears to enhance the severity of Lyme disease-like symptoms in mice. Coinfected mice have lower peak B. microti parasitaemia compared to mice infected with B. microti alone, which may reflect attenuation of babesiosis symptoms reported in some human coinfections. These findings suggest that B. burgdorferi coinfection attenuates parasite growth while B. microti presence exacerbates Lyme disease-like symptoms in mice.

Research on concurrent infection is scant but under appreciated as ticks are coinfected as well as the people they bite. More work needs to be done as well on tick bites potentially reactivating latent infections.

 

 

 

What You Need to Know About Neuralgia Caused by Lyme/MSIDS

Many Lyme/MSIDS patients suffer with neuralgia, a twenty dollar word for pain due to irritated or damaged nerves. The following articles do a great job explaining it. I was elated to see that the first article written this month attributes Lyme disease to causing it, along with other infections. My guess is Bartonella, Babesia, Mycoplasma, Brucella, and possibly other tick-borne illnesses, including viruses, could all play a part. Because the CDC/NIH/IDSA do not accept the fact this is often times a polymicrobial illness (infected with far more than just Lyme), and many of the coinfections are not reportable, authorities have absolutely no idea about prevalence.  

My guess is there are many diagnosed with neuralgia that have an undiagnosed Lyme/MSIDS infection.

https://www.medicalnewstoday.com/articles/325331.php

What to know about neuralgia

Last reviewed
Neuralgia refers to severe, shooting pain that occurs due to a damaged or irritated nerve. Neuralgia can affect any part of the body, causing mild to severe pain. Certain medications and surgical procedures can effectively treat neuralgia.
Severe neuralgia can interfere with a person’s ability to perform everyday tasks and may impact their quality of life.
Neuralgia has many possible causes, including:
  • infections, such as shingles, Lyme disease, or HIV
  • pressure on nerves from bones, blood vessels, or tumors
  • other medical conditions, such as kidney disease or diabetes
  • aging

    Types of neuralgia

    Healthcare professionals divide neuralgia into categories depending on the areas of the body it affects. The following are some common types of neuralgia:

    Trigeminal neuralgia

    Woman experiencing headache and neuralgia in face holding glass of water in pain

Trigeminal neuralgia (TN) involves the trigeminal nerve in the head. It has three branches that send signals from the brain to the face, mouth, teeth, and nose.

TN falls into two subdivisions: type 1 and type 2.

Type 1 TN causes a painful burning or electric shock-like sensation in parts of the face. People with type 1 TN experience irregular episodes that come on suddenly.

The duration of these episodes varies among people but can last up to 2 minutes, according to the National Institute of Neurological Disorders and Stroke.

Type 2 TN produces a constant, dull aching sensation in the face.

The exact cause of TN remains unclear. However, pressure from an enlarged blood vessel can irritate or even damage the trigeminal nerve.

Multiple sclerosis (MS) can give rise to TN. MS is a neurological disorder that causes inflammation that damages the myelin sheath surrounding nerve fibers in the central nervous system.

Postherpetic neuralgia

Postherpetic neuralgia (PHN) is a painful condition that affects the nerves in the skin.

According to the Centers for Disease Control and Prevention (CDC), PHN is the most common complication of shingles, affecting about 10–13% of people who develop it.

Shingles is a viral infection that causes blisters and a painful skin rash. The varicella-zoster virus, which causes chickenpox, remains dormant in the nervous system and reactivates later in life, causing shingles.

When the virus reactivates, it can cause inflammation in the nerve fibers. This inflammation can lead to permanent nerve damage that causes pain, even after the infection subsides.

Occipital neuralgia

This form of neuralgia affects the occipital nerves, which originate in the neck and send signals to the back of the head.

Occipital neuralgia causes a throbbing or shooting pain that starts near the base of the skull and radiates along the scalp. Occipital neuralgia pain can flow to the back of the eyes.

Occipital neuralgia has numerous potential causes, including:

  • sudden head movements
  • tense neck muscles
  • lesions or tumors in the neck
  • inflamed blood vessels
  • infections
  • gout
  • diabetes
  • neck injuries

Peripheral neuralgia

Difficulty eating or swallowing are potential symptoms of peripheral neuralgia.

 

Peripheral neuralgia, or peripheral neuropathy, refers to pain that occurs due to nerve damage in the peripheral nervous system. This includes all nerve fibers outside of the brain and spinal cord.

Peripheral neuralgia can affect a single nerve or entire nerve groups.

Sustaining damage to the peripheral nervous system can affect nerves that control muscle movements, transmit sensory information, and regulate internal organs.

Peripheral neuralgia can cause pain or numbnessin the hands, feet, arms, and legs. Other symptoms may include:

  • involuntary muscle twitching or cramping
  • loss of coordination
  • difficulty performing complex motor tasks, such as buttoning a shirt or tying shoelaces
  • hypersensitivity to touch or temperature
  • excess sweating
  • gastrointestinal problems
  • difficulty eating or swallowing
  • difficulty speaking

Intercostal neuralgia

Intercostal neuralgia affects the nerves that sit just below the ribs. Doctors call the muscles in this area the intercostal muscles.

Several potential factors may contribute to intercostal neuralgia, such as:

  • injuries or surgical procedures that involve the chest
  • pressure on the nerves
  • shingles or other viral infections

Intercostal neuralgia causes a sharp, burning pain that affects the chest wall, upper abdomen, and upper back. Certain physical movements, such as breathing, coughing, or laughing, can worsen the pain.

Additional symptoms may include:

  • tightness or pressure that wraps around the chest
  • tingling or numbness in the upper chest or upper back
  • muscle twitching
  • loss of appetite

Diabetic neuropathy

Diabetic neuropathy is the most common complication of diabetes. Because diabetes affects so many people, rates of peripheral neuropathy are now beginning to rise.

Symptoms include loss of balance and numbness, tingling, and pain. The best way to prevent diabetic neuropathy is to bring blood sugar levels within a suitable range.

 

Symptoms

In general, neuralgia causes intense and distinct symptoms, including:

  • sudden episodes of extreme shooting or stabbing pain that follows the path of a damaged or irritated nerve
  • persistent aching or burning pain
  • tingling or numbness
  • muscle weakness
  • loss of muscle mass, or atrophy
  • involuntary muscle twitching or cramping

 

Treatments

Treatment options for neuralgia vary depending on the type and severity of the condition.

Topical ointments, local nerve block, and steroid injections may offer temporary pain relief for mild neuralgia.

Treating severe neuralgia pain may require prescription medications, surgical procedures, or both.

Medications

A doctor may prescribe medication to treat neuralgia.

  • anticonvulsants, such as carbamazepine, topiramate, and lamotrigine
  • antidepressants, such as amitriptyline
  • muscle relaxants, such as baclofen
  • membrane-stabilizing medications, such as gabapentin

Surgery

Some surgical procedures can help relieve neuralgia pain when the condition does not respond to medication.

Examples of surgical procedures that can help treat neuralgia include:

  • Microvascular decompression: This helps remove an enlarged blood vessel pressing on a nerve. The procedure involves placing a soft pad between the blood vessel and the affected nerve.
  • Stereotactic surgery: This is a noninvasive procedure that delivers highly concentrated radiation beams to the root of a damaged nerve. The radiation disrupts the transmission of pain signals to the brain.
  • Balloon compression: This involves inserting a small balloon into the affected nerve. The balloon inflates, resulting in controlled, intentional nerve damage. This procedure prevents the affected nerve from sending pain signals to the brain. However, the effects of the procedure usually wear off after 1–2 years.

 

Outlook and takeaway

Neuralgia causes painful symptoms that vary in duration and severity. As well as pain, neuralgia can cause numbness, muscle weakness, and hypersensitivity.

If a person does not receive treatment, neuralgia can interfere with their ability to perform daily tasks.

People can work with a healthcare provider to establish the best course of treatment for their specific symptoms. If the condition does not respond to initial treatments, a healthcare provider may refer the person to a pain management specialist.

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**Comment**

They don’t list antimicrobial treatment as a treatment for this, but it is. Again, if Lyme/MSIDS is behind it, the only thing that’s going to squash this pain at the root is to eradicate the pathogens behind it.  Nothing touched this pain for me but long-term antimicrobials.  While some of the listed treatments may help, they are bandaids. I talk more about this further down.  Keep reading….

https://www.medicalnewstoday.com/articles/320143.php

What you need to know about occipital neuralgia

Last reviewed
Occipital neuralgia is the term for a headache that starts in the upper neck or back of the head and spreads or radiates behind the eyes, forehead, and up to the scalp.

 

Headaches are one the world’s most common health problems, with 80-90 percent of Americans experiencing a “tension headache” at some point in their lives.

More painful migraine, cluster, and other headaches are a leading cause of doctor or emergency room visits.

Although headaches are a common health problem, occipital neuralgia is a specific type of headache. According to the American Migraine Foundation, it is also rare, affecting only 3.2 people out of every 100,000 a year.

Fast facts on occipital neuralgia:
  • It is called occipital because it affects the area around the occipital bone.
  • Pain associated with occipital neuralgia is often sudden and severe.
  • Symptoms can be alarming, but they are not usually associated with any life-threatening health conditions.

How is it different from other headaches?

man holding the back of his neck

 

Headaches due to occipital neuralgia are frequently quite painful, starting with a sharp, stabbing pain, but most people with this condition respond well to treatment and most recover.

Occipital neuralgia is different from other types of headaches in two ways:

  1. The cause of the condition.
  2. The specific places where individuals feel pain.

Other headaches have more general causes, which can range from sinus infections to high blood pressure to medications and many other potential triggers.

But occipital neuralgia only develops when the occipital nerves are irritated or injured. These nerves are found at the second and third vertebrae of the neck.

Occipital neuralgia pain will only develop in areas touched by the greater, lesser, and third occipital nerves.

With one on each side of the head, the occipital nerves run from the spine to the scalp, and sensitivity can develop anywhere along this route.

What are the main symptoms?

lady touching side of face whilst lying in bed

 

For most people, the pain strikes on only one side of the head. It also tends to spread, usually from where the skull meets the neck, and then traveling up the back of the head and to the sides or behind the eyes.

In many individuals, the scalp can be affected, especially where the occipital nerves connect.

It can feel sore or extremely sensitive.

Light may also irritate the eyes.

Occipital neuralgia is described as coming in bursts of pain that come and go, lasting for a few seconds or minutes. At times, individuals may experience a lingering ache between more extreme bouts of pain.

Small movements can trigger an outburst of pain from occipital neuralgia. These movements include:

  • turning the head to the side
  • putting the head down on a pillow
  • brushing or washing the hair

The pain can be quite intense, which can prompt some individuals with the condition to say it is like a migraine or a cluster headache, even though these are different types and require different treatments.

What causes it?

Different conditions and circumstances can irritate the occipital nerves, which then give rise to occipital neuralgia.

Injury

Injuries to the neck area, such as whiplash from a car accident or some other sort of trauma, can damage the occipital nerves and lead to this condition.

Muscular problems

Tight muscles in the neck and the back of the head can put the squeeze on occipital nerves and pinch or entrap them, which can also lead to occipital neuralgia.

Back issues

Problems with the spine, such as arthritis, degenerating discs, or spondylosis, are possible sources of pressure on the occipital nerves, as are tumors.

Other causes

Other conditions that can play a role in developing occipital neuralgia include:

In many cases, it is not possible for someone to identify a single factor that damaged or irritated the occipital nerves.

How is it diagnosed?

doctor examining women's head and neck

 

A doctor taking a medical history and conducting a physical exam diagnoses occipital neuralgia.

This condition causes extreme tenderness along the occipital nerves. So, during a physical exam, the doctor may press on these areas to see if the pressure generates pain.

It is not always easy to diagnose occipital neuralgia because it has similar characteristics to many other kinds of headaches.

After initial exams, a doctor may order more involved tests.

One way to diagnose occipital neuralgia can also provide relief.

If a nerve block injected between the C2 and C3 vertebrae makes the symptoms go away, it is a strong indication of occipital neuralgia.

Deadening the nerves with anesthetics and corticosteroids helps individuals feel better, although the effects are temporary, only lasting about 12 weeks. However, injections into the vertebrae and numbing nerves are involved procedures, so a doctor will often pursue less invasive treatments first.

Can it be prevented?

For some people, antiepileptic medications and tricyclic antidepressants can prevent bouts of pain due to occipital neuralgia.

Treatments

Doctors will usually recommend straightforward treatments when individuals are first diagnosed with occipital neuralgia. These include:

The aim is to provide many people with relief by relaxing and releasing the muscles that are putting pressure on the occipital nerves.

Other medications, such as muscle relaxants and anticonvulsants, can help offset symptoms.

Nerve blockers

Nerve-blocking injections, which are used to diagnose the condition, can also be used to prevent pain.

Pulsed radiofrequency

Pulsed radiofrequency may be employed to stimulate the occipital nerves to keep them from sending pain signals. Although this procedure is more invasive than massage and medication, it does not damage any nerves or nearby tissue.

Surgery

Surgery is reserved for the most painful and difficult cases. Through a process called microvascular decompression, doctors eliminate pressure on the nerves by moving encroaching blood vessels out of the way.

Home remedies

Home remedies can do a lot to relieve the pain when tight muscles, injury, and stress cause occipital neuralgia.

Rest, massage, and warm compresses can help individuals work out the kinks that are creating pressure in their necks.

Physical therapy can help individuals work through the crisis phase of their occipital neuralgia and provide them with exercises they can do to prevent a recurrence of this painful condition.

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**Comment**

Again, they don’t state that proper antimicrobials addressing the systemic infection causing this as a treatment, but it is.  And for Lyme/MSIDS patients, it’s an extremely important treatment because as I stated before, all the others are mere bandaids.

This occipital neuralgia was my Achilles Heel and thorn in my side for years due to Lyme/MSIDS. I even had a MRI to rule out Chiari, which can be the result of a systemic infection.  I met 3 people in the same week with a Lyme/MSIDS diagnosis who also had Chiari:  https://madisonarealymesupportgroup.com/2016/04/02/chiari/

One of the best drugs for me was minocycline, due to its ability to cross the blood, brain barrier:  https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/

I’m certain there are plenty more patients with this symptom who have an undiagnosed Lyme/MSIDS infection.

Home remedies wouldn’t touch this pain with a 10 foot pole, much less NSAIDS.  I would caution the use of corticosteroids as these will suppress your immune system. The caveat would be if you are on an antimicrobial regimen and your practitioner is monitoring you.  I also caution the use of NSAIDS as taking massive doses of Ibuprofen about shut my husband’s liver down.

This pain may be the person’s first acknowledged symptom of Lyme/MSIDS.  Often men will suffer and self medicate and deny a real problem.  This is where spouses, friends, and family need to be educated about the possibility of a tick borne illness so they can mention it to the suffering person. If you are popping NSIDS like candy, something’s wrong.  Getting them to an open-minded, trained practitioner who will consider tick borne illness is your next job.  Contact your local support group for a list of ILADS-trained doctors.

Also, this pain for me radiated to the right side of my head from the occipital area to the right temple. There were times my right shoulder was involved with pain and numbness going all the way down my arm into my right pinkie finger.  The finger would also move on its own.  This can happen anywhere in the body.

https://www.medicalnewstoday.com/articles/321513.php

The following neurological conditions may be responsible for headaches on one side:

  • Occipital neuralgia: This occurs when nerves running from the top of the spinal cord to the scalp (occipital nerves) become damaged or inflamed. Symptoms include sharp pain in the back of the head and neck, pain behind the eye, and sensitivity to light.
  • Temporal arteritis: Arteries in the head and neck become inflamed with temporal arteritis. Along with muscle pain, it causes a severe headache on the side of the head. Other symptoms include fatigue, jaw pain, and tender temples.
  • Trigeminal neuralgia: This causes intense pain in the face and head. The pain usually affects only one side at a time. It is caused by disruption to the trigeminal nerve at the base of the brain.
Lyme/MSIDS infections can be behind all of this.  Spread the word.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Lyme Disease in Children: How to Navigate Symptoms, Testing, and Treatment

https://rawlsmd.com/health-articles/lyme-disease-children-navigate-symptoms-testing-treatment?

Lyme Disease in Children: How to Navigate Symptoms, Testing, and Treatment

Lyme Disease in Children: How to Navigate Symptoms, Testing, and Treatment

by Jenny Lelwica Buttaccio
Posted 5/31/19

“It was all very scary,” says Dorothy Leland, recalling the months leading up to her daughter Rachel’s diagnosis of Lyme disease. “We saw our child disintegrating before our eyes. We wondered: Was she going to die? Was she going to always be in this state?”

It was March 2005 when 13-year-old Rachel first developed severe, migrating pain throughout her body. It started with pain related to a sprained wrist during a soccer game, an injury which Leland expected to subside quickly. But Rachel’s recovery didn’t go as planned, and by the following week, the pain had shifted to her knees and one ankle, significantly impeding her ability to bear weight or walk. She needed a wheelchair to navigate her junior high school campus.

An x-ray didn’t reveal any clues as to what was causing such debilitating pain. After a trip to a rheumatologist and an extensive workup, Rachel was given a preliminary diagnosis of juvenile rheumatoid arthritis (JRA) and a prescription for prednisone, a steroid. However, her health dramatically worsened shortly after starting the medication, and Leland thought it best to discontinue it and promptly notified the doctor’s office.

A few days later, the results of the lab tests her rheumatologist had ordered were in — Rachel didn’t have JRA after all, and the doctor had no further insights or treatment suggestions. During the same span of time, a neighbor inquired about whether or not Rachel had been tested for Lyme disease. She hadn’t, so Leland asked the rheumatologist if her daughter’s symptoms could be related to the illness.

In an all too familiar story, the doctor dismissed the idea of Lyme disease, insisting that the tick-borne infection wasn’t present in California where they lived. Though the Leland family had traveled and enjoyed outdoor activities in other states and countries, he maintained his position that Rachel couldn’t have contracted Lyme.

“The doctors didn’t seem to be dealing with the same realities we were dealing with,” says Leland, who is now the vice president and director of communications for lymedisease.org and co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. “Something terrible was happening, and the places you normally reach out to for help weren’t able to do anything. They would say, ‘She’s fine. There is nothing wrong with her.’” But Rachel was most definitely not fine.

There were times when Rachel would cry, yell, thrash around, and hyperventilate, Leland describes — out of character for her energetic, sports-loving teenager. Eventually, Rachel would have two Lyme tests — both came back negative, making the diagnosis of Lyme disease seem unlikely, especially because Rachel had no recollection of a tick bite. But the family persisted in their efforts to find someone who could help Rachel, even visiting a renowned children’s hospital in July 2005, four months after the jarring onset of pain.

doctor examining a child girl in a hospital

The hospital’s explanation for what was wrong with Rachel? It was psychological.

“They said I was overly engaged in Rachel’s life, and that was the reason it was psychological,” says Leland. “That was very hurtful and really undermined my confidence as a mother. I thought, really? This is my fault? That was very hard to hear.”

As Leland describes in her book, the hospital took a “mind over matter” approach to treating Rachel’s pain — there wasn’t anything physically wrong with her, so if she could push through the pain of physical therapy sessions without any reliance on assistive devices like wheelchairs, she’d get better, they believed. They cautioned Leland against enabling or “coddling” Rachel, squashing a mother’s instincts that there might be something physically wrong with her daughter. However, the physical therapy sessions began to make Rachel worse, and the Lelands were left wondering what their next move would be.

Finally, an alternative healer using acupuncture and herbal therapies offered a glimmer of hope. Despite two negative Lyme tests, he believed Rachel did have the disease, though, he didn’t know how to help her. He suggested Leland take Rachel to a doctor who specialized in treating Lyme, but knowing where to begin the search was a Herculean feat. Lyme resources were scant, and online support groups like the ones currently found on Facebook didn’t exist yet.

Leland immersed herself in research and discovered a Lyme specialist two hours away from their home who had a particular interest in treating chronic and persistent Lyme disease and other tick-borne infections. In November 2005, she received a life-changing phone call. The doctor had a cancellation in his schedule, and he could see Rachel the day before Thanksgiving.

“We all still remember that day,” Leland says. “We didn’t know what was going to happen. We were following any thread we could.” That appointment would provide Rachel with a diagnosis: Lyme disease. And, it would set the stage for her to heal. Although the recovery process was long, Rachel, now an adult, is doing well and living her life, Leland says.

Leland’s story illustrates some of the obstacles parents of children with chronic and persistent Lyme disease face when trying to find a doctor, obtain an accurate diagnosis, and pursue treatment. Furthermore, because children with Lyme disease tend to look well, they often aren’t believed by peers, teachers, doctors, and family members — we even received stories from parents whose children had been the victims of bullying and harassment because of their illness.

10 Current Views on Lyme Disease in Children

Front view of an African ethnicity schoolboy holding a red book in arms while he is looking down ground with classmates pointing in background in outside corridor at school

Conservatively, there are more than 300,000 new cases of Lyme disease each year in the United States, reports the Centers for Disease Control and Prevention (CDC), about 25% of which occur in children. We say “conservatively” because these numbers are suspected by many to be highly underreported — just one illustration of the countless complexities of Lyme disease in general, and especially in young people.

To begin to unravel the mystery of Lyme disease and children, it helps first to know some facts and the areas of controversy surrounding this illness.

arrows going up

1. The Annual Incidence of Lyme in Kids is Higher Than You Think.

There are approximately 75,000 new cases each year, or about 205 per day — that’s more than the annual incidence of pediatric cancer, type I diabetes, and epilepsy combined in the U.S., reports Children’s Lyme Disease Network (CLDN).

target mark on child icon

2. Children are Prime Targets for Tick-Borne Illness.

This is due to two main factors — kids’ proximity to the ground, and their penchant for outdoor activities like playing in the leaves, both of which can increase their chances of coming in contact with ticks. The majority of Lyme cases in children tend to occur between ages 5 and 9, states the CDC, and boys are more likely to contract Lyme disease than girls in the U.S.

bullseye rash symbol

3. Bull’s-Eye Rashes Are the Exception, Not the Rule.

The CDC indicates the classic bull’s-eye rash (erythema migrans or EM rash) shows up in 70-80% of people infected with Lyme disease. However, Dr. Charles Ray Jones, a well-known pediatric Lyme specialist who has treated more than 15,000 children and adolescents, noted the EM rash was present in less than 10% of his young patient population. This massive disparity aside, the crucial piece of information for parents to know is that the absence of a rash doesn’t mean a child hasn’t contracted Lyme disease.

blood test tube crossed out

4. Traditional Testing Methods are Unreliable.

Tests like the ELISA and the Standard Western Blot have low sensitivity and can miss a large percentage of children who have been infected with Lyme disease. In other words, a child could have a negative test and still have Lyme disease.

However, physicians with additional training in the diagnosis and treatment of tick-borne diseases, like a Lyme-literate medical doctor (LLMD), can order additional tests to provide clues as to what’s going on or diagnose Lyme disease based on a child’s clinical presentation, symptoms, the potential for exposure to ticks, and medical history.

magnifying glass

5. Symptoms Are Far-Reaching and Unpredictable.

To date, there is no baseline set of symptoms to ascribe to children who have been affected with Lyme, but as with adults, the disease can affect any organ, joint, or tissue in their body. It’s not unusual to see kids’ symptoms range from joint pain and fatigue to neuropsychiatric manifestations like mood swings, aggression, obsessive-compulsive disorder (OCD), and more.

brian icon for euro symptoms

6. Kids are More Susceptible to Neurological Lyme.

European medical literature, such as one 2015 research article in Behavioural Neurology, suggests that children may be more likely to experience central nervous system involvement (or neurological Lyme disease) than adults. Experts don’t yet know why, but theories include that it may have to do with the species of Borrelia that a child is infected with and the location where the tick bite occurred — a bite located near the nervous system, like the head and neck, could account for the increased susceptibility.

people icons with a wall separating one from the other, lonely concept

7. The Social Impact is Significant.

Lyme disease has enormous social consequences for children. For instance, 79% of children will experience a loss in their number of friends. Kids with Lyme also have an increased risk of depression, and 41% will have suicidal thoughts, states CLDN.

brian icon with lightning bolt in the middle

8. Lyme Can Precipitate Childhood Neuropsychiatric Disorders.

Lyme disease is one of several infections that can act as a trigger for a constellation of neurological symptoms known as PANS (pediatric acute-onset neuropsychiatric syndrome) and PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Children with PANS/PANDAS can exhibit tics, obsessive-compulsive disorder, attention deficit disorder (ADD), depression, anorexia, and more.

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9. Contracting Lyme During Pregnancy Can Be Risky to the Fetus.

If a mother acquires Lyme disease turning pregnancy, placental infection can occur, and potentially, miscarriages, stillbirths, or other health conditions.

fetus icon

10. Congenital Transmission May Be Possible.

For decades, there has been a hotly contested debate over whether congenital transmission of Lyme from mother to unborn child can occur. The mainstream medical community has maintained the position that there’s not sufficient evidence to prove Lyme disease can be transmitted in utero. But some Lyme specialists, advocates, parents, and patients have a different take.

For starters, a 2018 medical literature review in PLoS One suggests that it’s “biologically plausible,” but maintains that further evidence is needed to understand how Borrelia burgdorferi infections affect a fetus or contribute to adverse birth outcomes. Also in 2018, LymeHope’s Susan Faber, RN, BScN, posted a review that chronicles case studies from more than three decades (1985 to 2018) in which international physicians, researchers, scientists, and others outline adverse fetal and neonatal outcomes associated with Borrelia burgdorferi and congenital transmission of Lyme disease.

The conflicting viewpoints are part of a larger controversy about the severity of Lyme disease, the validity of a chronic Lyme disease diagnosis, and the persistent nature of tick-borne disease, which leaves parents understandably confused and frustrated. Fortunately there are physicians like Dr. Bose Ravenel, a pediatrician with 50 years of clinical and academic practice and co-author of the book, The Diseasing of America’s Children: Exposing the ADHD Fiasco and Empowering Parents to Take Back Control, who focus on their passion for helping children thrive.

I believe Lyme can be transmitted to mother and child in utero,” Dr. Ravenel says. “It doesn’t make sense to me that it wouldn’t be. We look at other pathogens that mothers get, and we know that they can be transmitted — I don’t believe every child gets it that way, but some do.”

For parents, it’s essential to be aware of the ongoing debate so that you can make informed decisions about your child’s symptoms and healthcare.

Watch for These Symptoms

Sick boy with thermometer laying in bed and mother hand taking temperature. Mother checking temperature of her sick son who has thermometer in his mouth. Sick child with fever and illness while resting in bed.

As mentioned above, chronic Lyme disease can have a significant emotional, physical, and social impact on children. “In my experience, kids can present with regressive behavior, trouble interacting with peers, and issues with school work,” says Dr. Elena Frid, a pediatric and adult neurologist specializing in infections induced autoimmune disorders; Dr. Frid has treated hundreds of children with Lyme disease. “About 50% of children I see are not able to attend school full time.”

Symptoms of the early stage of acute Lyme can occur roughly three to 30 days after the initial infection with a new microbe. The initial symptoms may be mild — a child might exhibit flu-like symptoms, such as fatigue, headache, fever, body aches, and chills. A rash may or may not show up, but if it does, that’s the telltale sign that a child has been infected with Lyme disease. Because the flu-causing viruses are most active during the winter, observing flu symptoms in your child in summer months should serve as a warning that something else may be going on, especially if the child is spending time outdoors.

On the other hand, the list of symptoms a child with chronic or persistent Lyme may experience is expansive, and the disease can mimic many other conditions. The most common ones, as noted by CLDN, include:

  • Fatigue, exhaustion, or poor stamina
  • Joint pain that travels to different areas on the body without a known injury
  • Muscle pain
  • Muscle weakness
  • Headaches, including migraines
  • Fevers
  • Night sweats
  • Changes in sleep habits, either too much or too little
  • Abdominal pain
  • Changes in urinary habits, like increased urinary frequency or inability to hold urine
  • Personality changes like irritability, impulsivity, mood swings, depression, anxiety, anger, or rage
  • Obsessive-compulsive disorder
  • Forgetfulness or slow to answer questions
  • Sensitivity to light, sound, and taste

“In general, my radar goes up for chronic Lyme disease when I see a child on an initial visit with a comprehensive history, a multitude of diagnoses, and they aren’t getting better with multiple pharmaceuticals,” says Dr. Ravenel. “The medications can help them feel better and survive, but they aren’t really solving underlying problems.” Symptoms that he’s accustomed to seeing in the population of children he treats include fatigue, bipolar behavior, rheumatoid arthritis (RA), autoimmune diseases, anxiety, depression, OCD, tics, unexplained joint pains, and idiopathic arthritis (arthritis with an unknown cause).

For parents, it’s important to note that many of these symptoms may initially be subtle in children, especially young children who are unable to convey how they’re feeling. But if a child begins to rack up several diagnoses and isn’t showing improvement, it may be time to dig a little deeper into what may be going on.

How to Navigate Testing and Diagnosis

Lab equipment centrifuging blood. Concept image of a blood test.

Lyme disease testing and diagnosis are two additional points of contention in the medical community. First, the two-tiered testing method known as the ELISA and the Standard Western Blot — blood tests used to detect antibodies for Borrelia — have been shown to lack sensitivity and reliability, with false negatives appearing in approximately half of those who take it.

These tests are the most effective 4 to 6 weeks after contracting an acute infection. But many parents and children may not be aware that a tick bite even happened. And, the initial symptoms could be relatively minor and easy to overlook — until they escalate.

So what do you do if your child shows unusual symptoms but tests negative for Lyme disease? Consider seeing a doctor who has more experience in tick-borne infections.

“I don’t depend on test results to diagnose someone,” says Dr. Ravenel. “If parents have been to mainstream doctors, about 50% of Lyme disease cases have been missed by mainstream tests. A negative test doesn’t rule it out.” Despite negative test results, if a child exhibits several symptoms of Lyme disease, they can be clinically diagnosed and treated, states Dr. Ravenel.

For those who feel more comfortable with test results in hand, IGeneX and Galaxy Diagnostics are Dr. Frid’s go-to labs when it comes to testing for Lyme disease and additional coinfections like Bartonella, Babesia, Mycoplasma, and others. Just know that as with other Lyme tests, these are also not foolproof and can return false negative results.

Just like any other disease, Lyme disease should be taken seriously.

It can become chronic, and you need a good physician who is comfortable and has experience treating Lyme and other infections,” explains Dr. Frid. “A lot of acute infections can be treated fast and effectively with the right physician. Look for slight behavioral, learning, emotional, and social changes. If spotted, find out why, and test for coinfections right away.”

Consider the Range of Possible Lyme Treatments

Alternative remedies and traditional pills. Natural medicine vs conventional medicine concept.

Treatment for Lyme disease can be problematic for some parents, especially if one or both parents have the illness, too. Finding a knowledgeable doctor, the financial burden of treatment, and encouraging a child to remain compliant are obstacles that can make long-term plans challenging. But the key to helping a child improve is to find a healthcare provider you can trust and who offers a range of treatment options.

“The treatment approach is individualized to each patient,” says Dr. Frid. “Since many patients are treated for months or even years, the treatment plan depends not only on a patient’s age, but more so on clinical presentation and the type of infections and disease processes being addressed.” Ultimately, no treatment will be the same across the board.

In the acute stages of Lyme disease or coinfections, antibiotics may be able to remedy the situation quickly. The CDC recommends one of the following antibiotics according to weight to treat children:

  • Amoxicillin: 14-21 days with a maximum dose of 500 mg, three times per day
  • Doxycycline: 10-21 days with a maximum dose of 100 mg, twice per day
  • Cefuroxime: 14-21 days with a maximum dose of 500 mg, twice per day

But if symptoms go undiagnosed for a significant period of time, or if infections or symptoms linger after standard antibiotic therapy, children may require a longer course of treatment, which could include additional medications, supplements, homeopathic remedies, herbal therapies, and immune support.

When it comes to treatment choices for children, the options with the lowest potential for adverse reactions should be top of mind for most healthcare providers, says Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan. In many cases, herbal therapies fit the bill.

Guidelines for Herbal Therapy

Orange herbal supplement capsule, ground herbs in bowl. Herbal medicine to boost immune system.

Herbs have a low chance of harm or toxicity, and they have a supportive, restorative effect on the body. Plus, they can be used alone or in conjunction with other treatment protocols, and the dose can be individualized for a child based on age and weight.

A well-rounded treatment plan will include herbs (and lifestyle factors — more on that below) that not only target troublemaking microbes but also strengthen your child’s immune system. “Chronic Lyme disease occurs when immune system functions have become chronically disrupted and can no longer manage to keep unhealthy microbes in check,” says Dr. Rawls. He points to modern-day system disruptors — environmental toxins, processed-food diets that are heavy on carbs and light on nutrients, childhood stress, and excessive antibiotic use — as potential reasons why we might be seeing an increase in persistent Lyme symptoms in kids.

“With herbs, start slow, and gradually work up to a higher dose with consideration for your child’s weight,” says Dr. Rawls. “For example, if the normal dose for a 150-pound adult is three capsules twice a day, then start with one capsule one time a day and see how your child feels.”

If your child handles that dose well, you might try adding in a second dose three to five days later. If your child has difficulty tolerating the herb or experiences a Herxheimer reaction — which can include an intensification of symptoms like fatigue, muscle pain, flu-like symptoms, anxiety, depression, behavioral issues, and more — you might try lowering the dose for a few days to make them more comfortable. Then, reintroduce the higher dose when symptoms have abated.

“You’ll know you’re on the right track when your child demonstrates improvements over several weeks or months,” explains Dr. Rawls. “The symptoms will reduce, and your child will have more energy and resume interest in activities they might have had to forgo due to Lyme disease.”

Here are some of the herbs Dr. Rawls recommends, bearing in mind that the decision to take any natural regimen should be in partnership with your healthcare provider:

1. To Help Decrease Your Child’s Microbial Load:

  • Cat’s claw: This Amazon native is considered an immunomodulator, meaning it helps balance the immune system and calm inflammation.
  • Japanese knotweed: An excellent antimicrobial, Japanese knotweed offers coverage against Borrelia as well as common coinfections like Bartonella, Mycoplasma, Candida, and viruses.
  • Andrographis: A plant native to India, this herb has antiviral, antibacterial, and antiparasitic properties. It enhances the immune system and offers cardioprotective properties, too.
  • Garlic extract: Garlic has a longstanding use as a medicinal herb due to its antibacterial, antiviral, antifungal, and antiparasitic properties.

2. To Foster a Balanced Gut Microbiome Balance and Promote Gastrointestinal Health:

  • Berberine: The primary function of this herb is to restore the balance of healthy microbes in the gut microbiome.
  • Sarsaparilla: This South American native is known for its ability to bind to endotoxins (debris created by bacterial die off) and assist the body with their removal. It also has antibacterial and antifungal properties and can be found in many natural protocols for Lyme disease.

3. To Support Immune Function and Adrenal Health:

  • Chinese skullcap: This herb works synergistically with other herbs, meaning it increases the benefits of other supplements. Also, it has antibacterial and antifungal properties, which may work well against bacterial species like Bartonella and Mycoplasma.
  • Reishi: An antiviral and immunomodulating mushroom, reishi lessens inflammation and normalizes the immune response.
  • Cordyceps: A Tibetan native, this fungal species of plant helps combat stress, fight fatigue, support the immune system, and protect mitochondria, the energy-making powerhouses of each cell.
  • Rehmannia: An herb used in Traditional Chinese Medicine (TCM), rehmannia modulates the functions of the immune system and reduces allergic reactions.

Some Additional Guidance for Coping

Healthy food at home. Happy family in the kitchen. Mother and children daughters are preparing the vegetables.

Beyond herbal therapy, other lifestyle changes can play a significant role in boosting immune function and aiding recovery. For instance, an anti-inflammatory diet that is free from gluten, dairy, sugar, or allergens can help some children improve as well. In general, avoid processed foods as much as possible, and try your best to add in fresh produce, healthy protein sources like chicken and eggs, and beneficial fats like olive and avocado oils to your child’s diet.

Also, since the emotional and social effects of Lyme disease on children can be significant, you might want to consider working with a psychiatrist or therapist to reduce stress and help your child process the challenges of dealing with a chronic illness. If your child is showing difficulty with physical or cognitive functioning, a physical or occupational therapist with an understanding of Lyme disease and other tick-borne infections can be an integral part of your medical team, too.

If that sounds like a lot, honestly, it can be — including in the financial department. Even the best-laid treatment plans can place a substantial financial strain on families. Fortunately, some organizations exist that might be able to help you with treatment costs:

  • LivLyme Foundation: Founded by Olivia Goodreau at the age of 12, the organization supports children ages 0-21 and their families through an annual grant, which can be used to help cover the cost of doctor’s visits and medications.
  • Lymelight Foundation: This organization was created in 2011 and provides grants to eligible individuals up to 25 years of age, with a lifetime maximum of $10,000 per individual or $30,000 per family.
  • LymeAid 4 Kids: Created in 2004, LymeAid 4 Kids provides grants up to $1,000 to children under age 21, which can be used toward the cost of the diagnosis or treatment of Lyme disease.

While financial stuff can be stressful to Mom and Dad, there’s no doubt that navigating a Lyme disease diagnosis can be equally difficult and emotionally draining for your child, so helping them maintain a positive attitude is at the top of your to-do list, says Leland.

“My daughter went to a therapist for quite a while, and it was helpful,” says Leland. “Also, I think it really helps if there’s a scenario that the child is interested in. For my daughter, that was shooting and editing videos; for a young child, it could be Legos. But it’s something that takes them out of themselves and away from the pain. This is the only childhood that your child is going to get, and you want them to have good memories, too.”

She suggests these other ways to effectively cope and assist your child through recovery:

  • Find a Lyme-literate doctor.
  • Educate yourself about the physical and political aspects of the disease.
  • Find a supportive setting for yourself — either online or in-person — where you can ask questions.
  • Get involved in the Lyme community if you’re able. Activism can help you feel like you’re contributing to a greater cause.
  • Communicate with your child’s school about what’s going on and how they can help support your child and their ongoing education.
  • Check out MyLymeData, a free resource to help you compare treatment choices and outcomes from a database of over 12,000 patients. Plus, you can add your child’s information to this patient-driven study and track progress over time.

There will be many times when you’re wrought with setbacks when trying to help your child get well, but be persistent in the pursuit of the care your child needs. Dr. Frid’s advice?

”Find physicians who are sympathetic to your situation and are willing to try treatments or be a support system for other physicians who are far away.” Most importantly, she adds: “If whatever you are doing is not working, try something else. ‘Don’t give up’ goes without saying.”

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. Berenbaum SK, Kupcha Leland D. When Your Child Has Lyme Disease: A Parent’s Survival Guide. Davis, CA: Lyme Literate Press; 2015.
2. Children and Lyme Disease. Lymedisease.org website. https://www.lymedisease.org/lyme-basics/lyme-disease/children/
3. How Many People Get Lyme Disease? Centers for Disease Control and Prevention website. https://www.cdc.gov/lyme/stats/humancases.html
4. Lyme Disease Overview. Children’s Lyme Disease Network website. http://www.childrenslymenetwork.org/children-lyme/lyme-disease-overview/
5. Preventing Tick Bites. Centers for Disease Control website. https://www.cdc.gov/ticks/avoid/on_people.html
6. 33 Years of Documentation of Maternal-Child Transmission of Lyme Disease and Congenital Lyme Borreliosis. LymeHope website. https://www.lymehope.ca/news-and-updates/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review-by-sue-faber-rn-bscn
7. Transmission. Centers for Disease Control and Prevention website. https://www.cdc.gov/lyme/transmission/index.html
8. Treatment. Centers for Disease Control and Prevention website. https://www.cdc.gov/lyme/treatment/index.html
9. Tveitnes D, Øymar K. Gender Differences in Childhood Lyme Neuroborreliosis. Behavioural Neurology. November 2015; (10): 1-6. doi: 10.1155/2015/790762
10. Waddell LA, Greig J, Lindsay LR, Hinckley AF, Ogden NH. A systematic review on the impact of gestational Lyme disease in humans on the fetus and newborn. PLoS One. 2018 Nov 12; 13(11): e0207067. doi: 10.1371/journal.pone.0207067
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**Comment**
Fantastic article.  Great information.
Please send to parents who suspect their child has Lyme/MSIDS.
This article once again highlights how mainstream medicine is completely in the Dark Ages with tick borne illness.  They blithely accept it isn’t sexually or congenitally transmitted despite numerous animal studies, a few human, and many saying otherwise, plus the fact it’s a spirochete in the same family as Syphilis:  https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/
Also, notice a neighbor was the one to alert this mother to the potential of Lyme/MSIDS.  This happens again and again and again as mainstream medicine would rather diagnose you with ANYTHING other than Lyme/MSIDS.  Doctors are afraid to treat this:  https://madisonarealymesupportgroup.com/2018/12/15/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients/ This is happening all over the world.
Once again, the take-home here is find an experienced Lyme literate doctor (LLMD) trained by ILADS (International Lyme & Associated Diseases Society). The best place to start is your local Lyme support group.  They typically have a list of trained practitioners in your area.
Appropriate treatment is everything.

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

https://madisonarealymesupportgroup.com/2019/04/11/lyme-disease-neurological-changes-in-children/

The overemphasis on recalling a tick bite and the EM rash has been delaying diagnosis and treatment in people for over 40 years.  Don’t let it happen to you or your child:  https://madisonarealymesupportgroup.com/2019/03/26/study-says-only-about-18-of-children-with-lyme-recall-tick-bite/

https://madisonarealymesupportgroup.com/2019/03/26/formally-challenging-cdc-advice-on-lyme-disease-rashes/

This article shows that the percentages seeing the rash range from 27-80%, hardly a sure thing, yet is continually being used as an Iron Curtain of diagnosis as well as entrance criteria into research studies:  https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/ Read comment after article

Online support for parents with infected children:  https://groups.yahoo.com/neo/groups/lymeparents/info

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

Also, those infected sexually and congenitally will NEVER see a tick bite or a rash.

 

If You’re Testing For Lyme Disease, Here’s What You Should Know

https://www.bustle.com/p/if-youre-testing-for-lyme-disease-heres-what-you-should-know-17937868

If You’re Testing For Lyme Disease, Here’s What You Should Know

ESB Professional/Shutterstock

Lyme disease is a growing epidemic, with cases more than doubling in the U.S. from 22,000 in 2004 to 48,000 in 2016. But even more people than that likely have Lyme disease and don’t know it. The typical Lyme disease tests — the Western Blot and ELISA blood tests — are believed to miss many infections, leading some doctors to use other methods for Lyme disease diagnosis.

The most common way of testing for Lyme is a two-tier approach, where people do a Western Blot test if the ELISA test is positive, Elena Frid, MD, a board-certified neurologist who specializes in Lyme disease, tells Bustle.

This approach is only 56 percent sensitive, which means it misses 44 of every 100 cases, she says.

Some patients may also receive a spinal tap to check for Lyme in the cerebrospinal fluid, but this is also not sensitive enough for a negative test to rule out Lyme.

One big problem with standard Lyme testing is that it looks for antibodies the immune system creates to fight Lyme. Since Lyme evades and suppresses the immune system, a patient’s body may not create these antibodies, Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, tells Bustle.

They also don’t test for every strain of bacteria that can cause Lyme, Marna Ericson, PhD, assistant professor at University of Minnesota Medical School, who is currently developing a new Lyme test that detects DNA and RNA, tells Bustle. Plus, many Lyme bacteria form collections called biofilms in tissue where they become dormant, so they may not be in the blood. In addition to producing false negatives for all these reasons, antibody tests can product false positives because someone can have antibodies from a past infection, Ericson says.

Some alternative tests that have not yet been adopted by most doctors use other methods in attempt to circumvent these problems. IGeneX makes more sensitive ELISA and Western Blot tests, though they still miss many infections. DNA Connexions, another Lyme test provider, detects DNA of microbes known to cause Lyme and co-infections in a patient’s urine. Even then, though, the urine sample is only a snapshot, so the microbes could be hiding out elsewhere in a patient’s body, Dr. Reihman says. And if the microbe is found, there’s no guarantee that the person has an active Lyme infection, as many people keep these microbes latent and are healthy.

One of the most promising tests is from ArminLabs, where antigens are put into a blood sample to see if the immune cells secrete inflammatory markers that indicate they’re being whipped into action, Dr. Reihman says. However, she adds, “they’re not going to be 100% sensitive.” Ericson believes the most accurate tests are ones like those from Galaxy Diagnostics and TLAB that test for genetic material visualization of bacteria in tissue from blood samples.

But many doctors diagnose patients with Lyme based on their symptoms alone, which is known as a clinical diagnosis. The CDC states that the main criteria for a Lyme diagnosis are symptoms and history of exposure to ticks.
“I don’t rely exclusively on testing. Even the new ones are not 100 percent sensitive, so when the test is negative, it comes down to a clinical diagnosis in the end,” Dr. Reihman says.

Dr. Frid believes in making a clinical diagnosis but using blood tests from providers like IgeneX and Galaxy to support that diagnosis, with the understanding that a negative test doesn’t rule it out. She also advocates testing for Lyme co-infectionsincluding Babesia, Bartonella, Ehrlichia, Rickettsia, Tularemia, Mycoplasma, Strep, and Epstein-Barr virus.

The moral of the story is that figuring out whether you have Lyme is not as simple as going to any old doctor and taking a blood test. And if you have done that but have been told that you’re fine or that your symptoms are in your head, you don’t have to take that answer at face value.

Your best bet is to go to a doctor with experience diagnosing, treating Lyme disease, and exploring all the different markers of Lyme, including symptoms, exposure history, and possibly test results or responses to treatment.

**Comment**

Great article.  Please remember that a large chunk of patients also struggle with coinfections, which Lyme testing will never pick up:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  Key quote:

Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”

Please notice the emphasis on a “clinical” diagnosis based on exposure and symptoms.  Mainstream medicine is completely ill equipped for this and needs serious education.  If you are a practitioner wanting this or if you are a patient with a doctor open-minded and willing to learn about Lyme/MSIDS, please see:

https://madisonarealymesupportgroup.com/2018/02/19/calling-all-doctors-please-become-educated-regarding-tick-borne-illness-heres-how/

https://madisonarealymesupportgroup.com/2018/06/06/lyme-education-for-healthcare-professionals/

https://madisonarealymesupportgroup.com/2019/03/15/global-lyme-alliance-announces-new-partnership-with-delaware-lyme-board-to-help-educate-physicians-about-lyme-disease/

For WI doctors:  https://wisconsinlymenetwork.z2systems.com/np/clients/wisconsinlymenetwork/survey.jsp?surveyId=1&

Riding Out The Storm of Lyme

https://rawlsmd.com/health-articles/riding-out-storm-lyme-healing-lifestyle-that-carried-jeff-tkach-recovery?

Riding Out the Storm of Lyme: The Healing Lifestyle that Carried Jeff Tkach to Recovery

Riding Out the Storm of Lyme: The Healing Lifestyle that Carried Jeff Tkach to Recovery

By Jeff Tkach
Posted 5/22/19

Throughout my adult life, I’ve always been a proactively healthy and fit person. I’ve been known to ride my bike more than 100 miles in a given day, have been committed to eating a mostly organic diet for the last 15-plus years, and I take great solace in sleepand in managing my stress through yoga and meditation. But all of this was challenged in 2016, when I hit a point in my career that exposed me to prolonged and intense periods of stress.

That October, after pushing relentlessly beyond my limits (jumping on and off airplanes, flying back and forth across the country for business meetings), I was struck with flu-like symptoms that kept me sidelined for more than two weeks. I went to and from my family doctor several times, who ran a battery of tests and bloodwork, only to find no positive results for anything I was tested for. He even administered a Western Blot Lyme test that was negative.

Over the next few months, I would get well enough to go back to work for a few weeks only to crash again, each time a little bit harder. I kept returning to that same doctor, determined to get answers, and he kept referring me to one specialist after another, none of whom provided answers.

At one point, my doctor put me on a 30-day course of Ciprofloxacin, a very potent, broad-spectrum antibiotic, that left me feeling decimated. He convinced me that this was the best course of action for one of my symptoms. But the antibiotic gave me no relief, and my energy levels plummeted by the end of the 30 days.

“ I realized that if I were going to get better, I was going to have to become my own health advocate.”

By the time Christmas rolled around, I was completely bedridden and forced to go on medical leave in early January. The same family doctor whom I had been seeing for the past three months finally diagnosed me with “depression and anxiety.” He put me on an antidepressant and told me that there was nothing more that he could do for me.

Completely depleted and unable to work, I felt hopeless beyond despair. I suffered from chronic gastrointestinal distress, fevers, night sweats, hallucinations, intense body aches, and panic attacks. I felt like I was losing my mind, and I was terrified because no one could give me a reason for my health collapse.

Jeff Tkach meditating, black and white photo

At that point, I realized that if I were going to get better, I was going to have to become my own health advocate. And thus, the journey to wholeness began. I was referred to a Functional Medicine doctor, whom I got into see during the last week of February, 2017.

To this day, I do not know where I would be without Dr. Kracht. Not only did he provide me with a sense of assurance, but he became my advocate. He immediately treated me for fluoroquinolone toxicity, a condition that is often caused by antibiotics from the Fluoroquinolone family (Cipro). He treated me using IV therapy, detoxification protocols, and supplements like glutathione.

I started to feel a little better over the next few weeks, and miraculously got back to work by mid-March. A few months into this treatment regimen, I started having headaches and neck aches again, so my doctor decided to run a more elaborate Lyme test (iSpot). Sure enough, I tested positive for Lyme (my numbers were off the charts) even though I never found a tick or bulls-eye rash.

I started a combination of antibiotics and herbs, but after a week or so I was unable to tolerate the antibiotics, due to gastrointestinal distress. Now that I knew Lyme was the culprit behind my health collapse, I began my own research that set me on the path that I am still on today.

“Healing became multi-layered and encompassed so much more than healing from the physical symptoms: It was spiritual and emotional, too.”

I continued to add modalities to my protocol, such as infrared sauna treatments and IV therapy (Meyers cocktails), as well as supplements and herbs to aid detoxification and ease inflammation. Yoga and meditation became daily disciplines. At first, I could only do 5 or 10 minutes at a time, but I stuck with both practices, which helped to ease the panic and anxiety symptoms and deepen my sleep. I also began weekly acupuncture which helped to reset my parasympathetic nervous system; those weekly visits to Dr. Jenn became foundational to my healing. I was making progress, albeit slowly.

I began to read every book available on the topics of Lyme and chronic illness, and my healing became a “trial and error” process. Or, to put it another way, it was like peeling back the layers of an onion. Healing became multi-layered and encompassed so much more than healing from the physical symptoms: It was spiritual and emotional, too.

From the very beginning of my health collapse, I was fortunate enough to have a caring and compassionate therapist in my life. Our weekly visits during my darkest times helped to shed light on emotional trauma that I had been harboring for years, if not decades. This trauma was holding me back from healing. The more that I unpacked it and “befriended” my grief and suffering, the more I began to slowly and incrementally heal. It was then that I finally came to grips with the fact that if I were going to fully recover, it was going to take time, patience, and focused effort.

https://rawlsmd.com/wp-content/uploads/2019/05/jeff_2.jpg

My journey eventually led me to more and more reading and studying, and I came upon Dr. Bill Rawls’ book, Unlocking Lyme. After reading his book, I was fortunate to have a one-hour session with him over the phone, and he opened my eyes to the complexities and intricacies of Lyme. Dr. Rawls explained the analogy of “the pot boiling over” and helped me to understand how the body operates as an ecosystem, and that my job was to bring the ecosystem back into balance.

I began to use his herbal protocol, and embraced the restorative diet that Dr. Rawls outlines in the book. At this point, I was still experiencing intense gastrointestinal distress (likely from the Cipro and other antibiotic use). I had lost more than 20 pounds and was not able to properly digest food.

What Dr. Rawls helped me to see and understand is that overcoming Lyme, or any chronic illness, had to become a lifestyle. The idea of “healing as a lifestyle” made total sense to me, and so I began to treat each decision each day as an incremental step towards full health.

From that point on, I made my healing journey a lifestyle, and I accepted the fact that there was no quick fix. My healing became a daily rhythm: morning meditation, journaling, prayer, yoga, healthy movement, sauna therapy, proper sleep, mid-day walks, and deep breathing. I focused on making nourishing meals that healed my gut and restored my energy. I used infrared sauna therapy, acupuncture, massage, polarity therapy, and qigong.

“The idea of “healing as a lifestyle” made total sense to me, and so I began to treat each decision each day as an incremental step towards full health.”

Every decision and every modality slowly peeled back, layer upon layer, the illness. It was three steps forward, one step backward. Trial and error, not without its frustrations. But I continued to live the lifestyle, and little by little I got my life back. In fact, I received the gift of a much deeper, more present, and more meaningful life.

To this day, two and a half years into the journey, I continue to see improvements from Dr. Rawls’ herbal protocol and from living the lifestyle he recommends, including eating whole, organic foods (most plants, healthy fats, and chicken and fish). Over the last few months, I have been amazed by the dramatic improvements in my physical endurance and strength. I am back to cycling up to 30 miles a few times per week, running 4 to 6 miles, swimming, and have recently taken up surfing (my new passion!).

Jeff Tkach sitting happy, recovered from Lyme disease

I want to personally thank Dr. Rawls and everyone on his team for providing us with such great resources to help us on this healing journey. Thank you also to Dr. Kracht, Dr. Jenn, and Dr. Hoffman for all of your support. And most of all, thank you to my amazing wife and partner, Jackie, for your love, patience, and support through the most difficult journey of my life. You are my rock and my light.

During my darkest days, I took great solace in poetry. It was a healer and companion that gave me a ray of hope and meaning during the most difficult times. I would like to share one poem in particular with all of you, my fellow healers. I hear your grief cry. You are not alone, we are in this together, and we will reclaim our vitality and wholeness.

Pushing Through
It’s possible I am pushing through solid rock
in flintlike layers, as the ore lies, alone;
I am such a long way in I see no way through,
and no space: everything is close to my face,
and everything close to my face is stone.
I don’t have much knowledge yet in grief
so this massive darkness makes me small.
You be the master: make yourself fierce, break in:
then your great transforming will happen to me,
and my great grief cry will happen to you.

Rainer Maria Rilke
(Translated by Robert Bly)

Welcome to the #MeAgain Story Series. Our aim is to share stories from people who have recovered, or are recovering, from chronic disease in order to give you hope that healing is within your reach. This series will highlight their struggles and triumphs to inspire you to take action and reclaim your life. Enjoy!

Hank’s Story | Shawn’s Story | Julie’s Story | Ron’s Story | Stephanie’s Story
Donna’s Story | Brad’s Story | Mira’s Story | Jeff’s Story

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**Comment**

I love stories with people getting better.  Please remember that what works for one may not for another.  Also, there’s a tendency with some patients to give “natural” things all the credit when they did extensive antibiotics which killed pathogens before.

There is nothing “holy” or better about natural products.  They are strong medicine too and some people can’t tolerate them either.

The reason I write this is that throughout my journey I’ve had well meaning people essentially blame me for being ill as well as discredit and label pharmaceutical treatment  of any kind “The bad guy.”  While Big Pharma has done some pretty rotten things, I don’t believe the medicines they’ve made are to be blamed for their unethical behavior. I didn’t enjoy taking antibiotics as they made me feel worse at the time (herxheimer reaction) but the results are undeniable.  I have my life back.

Whatever makes you improve, USE IT, but don’t diss others who use something different.  The end goal is to get better.

BTW:  The Ciprofloxin that didn’t help him, helped me dramatically. Throughout treatment you will have to weigh the risk with the benefit. Also, Bartonella is known to cause GI issues. The intolerance to antibiotics due to GI upset could very well be the killing of Bartonella or other pathogens – in essence a herx reaction.  This too needs to be weighed and balanced. All adverse reactions should be discussed with your practitioner but there were many times I wanted to quit treatment due to discomfort of one type or another.  Treatment is hard and long. Sometimes we just need to tough it out, and other times we truly need to switch things around and even discontinue some things.  Also, the things we discontinue at one point might work at another point.

This will test you like nothing else.  Strap yourself in for a wild ride.  Patience required.