A Strange Itch, Trouble Breathing, Then Anaphylactic Shock

By LISA SANDERS, M.D. JAN. 4, 2018

“I can’t breathe,” the woman panted, her voice a husky monotone. Her sister looked anxiously at the clerk at the triage desk at the University of Iowa hospital emergency room. The woman’s breath was rapid and coarse. Her chest heaved with the work of simply breathing. She pulled at the neck of her sweatshirt — suddenly it was too tight. She pulled it over her head and dropped it to the floor. She was naked beneath the top; she had been in bed when this attack came on.

The 54-year-old woman was helped into a wheelchair and whisked into the inner sanctum of the E.R. What followed was a blur of concerned faces, needles and medical data. Her blood pressure was dangerously low; her heart was racing. She was given epinephrine and steroids, but it was hours before she could explain what had happened that night.

She was staying at her mother’s house in rural Iowa, she told the doctors. Just as she was going to bed, she felt a sudden tingling in the palms of her hands. She recognized the sensation immediately: Twice in the past eight years, she had felt the same strange itch on her hands and sometimes her feet. Each time it was quickly followed by a terrifying sense of her throat closing.

Anaphylactic Shock

She had driven herself to her sister’s house, several miles away, and her sister drove her the rest of the way to the hospital. She opened the car window to let in the frigid winter night air. She struggled to breathe. Black spots swam before her eyes, but she willed herself not to pass out.

She had had this kind of allergic reaction twice before but never as severely. She knew from her own research that this was anaphylactic shock — a potentially deadly allergic reaction. After she got the medications, the woman’s symptoms resolved. She stayed in the hospital overnight, and when it was clear that the episode was over, she went back to her mother’s house. She made an appointment to see a local allergy specialist right away.

A Mystified Allergist

The specialist spent nearly two hours going over everything the woman had been exposed to — food, plants, toxins, anything that might have triggered this nearly fatal allergic reaction. There were no new exposures that day, nothing she hadn’t eaten or touched many times before and after this latest attack. The most common cause of severe allergic reactions in adults is food, but the allergist couldn’t identify any likely suspects. He was mystified. He asked her to share her diagnosis when she got one.

For months after returning to her home on Long Island, the woman was anxious about everything she ate, and she worried every night when she went to bed. She always kept a bottle of Benadryl and an EpiPen with her, but still she was terrified about what might happen if she was too far from a hospital the next time.

‘I Need a Nurse!’

When her next attack happened — just 10 months later — she was already in Brookhaven Memorial Hospital in East Patchogue, N.Y. She was being treated with antibiotics for a devastating case of gastroenteritis due to salmonella. Her first meal, after days of nothing but clear liquids, was beef brisket with potatoes and carrots. It smelled good, but she had no appetite. She made herself eat a few bites anyway, knowing it was her first step toward going home.

A couple of hours later, she felt a strange itch on the top of her head. She scratched reflexively. Then the recognition hit her like a slap: Not now, she thought. She grabbed the IV pole, still dripping fluids into her system, and ran out into the hallway. “I need a nurse,” she shouted. Her heart was pounding, and she knew what was coming next. Hospital staffers in scrubs descended on her. Was she having a panic attack? No, an allergy attack, she told them.

They helped her back into bed and gave her oxygen, Benadryl and steroids. “What happened?” someone asked. She told the whole story, plus something she now realized — every one of her attacks seemed to come a few hours after she ate beef. She didn’t go through this every time she had a hamburger or steak; meat was a regular and much-loved part of her diet. But she was pretty sure that she had steak — or beef brisket, this time — before each episode.

Her doctors were dubious. New food allergies — especially severe ones like hers — are uncommon in adults. This was much more likely to be an allergic response to one of the antibiotics they were giving her. The patient, though, found that theory hard to swallow. It might explain this episode, but what about the earlier ones? She hadn’t been on antibiotics then. The doctors had no answer.

Was a Tick to Blame?

A nurse had a different theory about what happened, one the patient had heard before but never believed. There was some kind of tick, the nurse told her, whose bite could make you allergic to meat. She didn’t know much about it. But, the nurse suggested, she should check it out.

The woman had been bitten by ticks before — who on Long Island hasn’t? But was it really possible for a bite to produce this crazy reaction? Indeed it was, she discovered, when she got home and began doing some research. The bite of the lone star tick — named for a white spot shaped like Texas on the arachnid’s back — could cause an allergic reaction to mammalian meat. The trigger was a sugar, identified as galactose-α-1,3-galactose and more casually known as alpha-gal, a carbohydrate found in the flesh of all nonprimate mammals.

How the tick bite triggers this allergy is not yet known. The link between the tick — whose range extends from southern Florida to Maine and as far west as Iowa — and the resulting alpha-gal allergy was first described in 2009 by Thomas Platts-Mills, a professor at the University of Virginia, who himself developed the disorder. Unlike most food allergies, in which symptoms occur within minutes of consuming the allergen, the alpha-gal reaction is delayed. The symptoms — ranging from a rash to nausea to shortness of breath and even anaphylaxis — can appear four to six hours after a meal containing meat. Stranger still, the reaction doesn’t occur after every exposure.

A Diet Changed Forever

The diagnosis of mammalian meat allergy (M.M.A.) can be confirmed with a blood test that identifies antibodies to alpha-gal. The patient contacted Diane Cymerman, an allergist she had seen years earlier for seasonal allergies. Cymerman asked her to list all the foods she consumed before her last episode in the hospital and had her blood tested for antibodies to everything on the list, down to the black pepper and parsley seasoning. And to alpha-gal.

The first results came back the following week: She had a moderate allergy to beef, but everything else was normal. The following month, the test results for alpha-gal antibodies came back. She was wildly allergic to galactose-α-1,3-galactose. Cymerman called the patient with the news. She had to avoid eating meat from mammals — and everything derived from them, including Jell-O and other foods and medications made from gelatin. Even safe foods cooked on a grill that has also been used for meat can be contaminated with enough alpha-gal to trigger a reaction.

The patient contacted the allergist back in Iowa and told him what she had. He was amazed. He had only recently heard a lecture on this phenomenon. He had never seen it before her case.

It hasn’t been easy for this Iowa transplant to give up beef and other meat that comes from mammals. Some days, she tells me, just thinking about a juicy hamburger or steak makes her stomach growl. But she remembers her terror and that long drive to the Iowa hospital and sticks to chicken, fish and vegetables.

Lisa Sanders, M.D., is a contributing writer for the magazine and the author of “Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis.” If you have a solved case to share with Dr. Sanders, write her at



For more on Alpha-Gal:

Approx. 5 Min.

Great video by Dr. Greger at on tick bites, meat allergies, and chronic urticaria  Australian allergy specialist Sheryl van Nunen got her red meat allergy mystery solved when there was a surge in allergic reactions in the U.S. to a drug, Cetuximab, used to treat colorectal cancer developed using a mouse cell line, also containing alpha-gal.


If you haven’t read the articles on vaccines, please do. and
Some vaccines used to be run through mouse brains. This is important to know as mice are one of the biggest reservoirs for borrelia, the causative agent known to cause Lyme Disease.

More damning evidence of the mouse/vaccine connection:




The 2-tier serology assay missed 85.7% of the cases of early Lyme disease with spirochetemia

Carl Tuttle
Hudson, NH
JAN 16, 2018 — Please see the letter below addressed to the TBD Working Group referencing ongoing attempts to suppress direct detection methods in the laboratory testing for Lyme disease.

Anyone wishing to contact the Lyme Disease Working Group can send an email to:

Letter to the Working Group:

I would like to call attention to the study below published in November of 2010 by Dr. Sin Lee identifying faulty serology tests for Lyme disease in 85.7% of the walk-in patients in the Emergency Room of Milford Hospital.

One month after publishing his paper (Dec 13, 2010) Dr. Lee received a termination of employment letter from the Director of Human Resources at Milford Hospital as they ordered the immediate shutdown of the molecular diagnostic laboratory. It appears that individuals at Yale Medical Group weren’t happy with the truth and wanted to end his work and shut down his lab sabotaging the development of a DNA sequencing test for Lyme disease diagnosis.

For those who haven’t made the connection:

Serology cannot be used to gauge treatment failure or success which makes it the ideal tool for concealing persistent infection perpetuating the thirty year dogma that chronic Lyme does not exist.

Did the scientists in Europe use Western blot or DNA sequencing to prove the Iceman contracted Lyme disease 5000 years ago? If DNA sequencing can be used to confirm Lyme disease in a dead man frozen 5000 years ago, why are we not trying to use the same technology to diagnose Lyme disease on those still walking?

Iceman Mummy May Hold Earliest Evidence of Lyme Disease

Dr. Lee went on to win a lawsuit against his employer’s irrelevant unsubstantiated accusations(Sin Hang Lee vs. Milford Hospital, Incorporated et al) and reopened his lab to continue his work. In 2014 Dr. Lee published a study of persistent infection while working on a project with the Centers for Disease Control. Once that study was published, the CDC stopped communicating with him.

“There are people who do not want to see the ugly truth which may be revealed by widespread use of direct detection tests.”

With early detection and treatment, eradication of infection is possible but faulty/misleading antibody tests are the root cause of unimaginable pain and suffering.

A Lyme patient in Norway won her recent lawsuit due to faulty/misleading antibody tests….

“On May 23rd, 2017, Seim was granted, in the District Court, 340,000 in court costs, and claims for expenses for up to 90,000”

BOTA BORRELIA – CURE LYME – Lyme patient receives compensation 10 years after inadequate treatment.

1. Dr. Lee’s 2010 Publication:

BMC Res Notes. 2010 Nov 1;3:273. doi: 10.1186/1756-0500-3-273.
Early Lyme disease with spirochetemia – diagnosed by DNA sequencing.
Lee SH1, Vigliotti VS, Vigliotti JS, Jones W, Williams J, Walshon J.



A sensitive and analytically specific nucleic acid amplification test (NAAT) is valuable in confirming the diagnosis of early Lyme disease at the stage of spirochetemia.


Venous blood drawn from patients with clinical presentations of Lyme disease was tested for the standard 2-tier screen and Western Blot serology assay for Lyme disease, and also by a nested polymerase chain reaction (PCR) for B. burgdorferi sensu lato 16S ribosomal DNA. The PCR amplicon was sequenced for B. burgdorferi genomic DNA validation. A total of 130 patients visiting emergency room (ER) or Walk-in clinic (WALKIN), and 333 patients referred through the private physicians’ offices were studied. While 5.4% of the ER/WALKIN patients showed DNA evidence of spirochetemia, none (0%) of the patients referred from private physicians’ offices were DNA-positive. In contrast, while 8.4% of the patients referred from private physicians’ offices were positive for the 2-tier Lyme serology assay, only 1.5% of the ER/WALKIN patients were positive for this antibody test. The 2-tier serology assay missed 85.7% of the cases of early Lyme disease with spirochetemia. The latter diagnosis was confirmed by DNA sequencing.


Nested PCR followed by automated DNA sequencing is a valuable supplement to the standard 2-tier antibody assay in the diagnosis of early Lyme disease with spirochetemia. The best time to test for Lyme spirochetemia is when the patients living in the Lyme disease endemic areas develop unexplained symptoms or clinical manifestations that are consistent with Lyme disease early in the course of their illness.

2. Dr. Lee’s additional publication identifying chronic Lyme: (2014)

DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.

At what point in time do we acknowledge that Lyme disease has been tenaciously mishandled to protect the long established racketeering scheme outlined in the Shrader & Associates RICO lawsuit;

You can read the court document here:

Might I remind everyone reading this email that the Centers for Disease Control has aligned itself with the seven defendants identified in this racketeering lawsuit so if the CDC is allowed to oversee the future direction of Lyme per the recommendations/outcome of this TBD Working Group we are in for another thirty years of failure to control, treat and eliminate this 21st Century plague.


Carl Tuttle
Lyme Endemic Hudson, NH

Magnesium: An Invisible Deficiency That Could Be Harming Your Health

By Dr. Mercola January 19, 2015 

Magnesium Deficiency

Story at-a-glance

  • Only about 25 percent of US adults are getting the recommended daily amount of magnesium (and even that may not be enough)
  • Magnesium deficiency may trigger 22 medical conditions, from anxiety to diabetes
  • Early signs of magnesium deficiency include loss of appetite, headache, nausea, fatigue, and weakness

Magnesium is a mineral used by every organ in your body, especially your heart, muscles, and kidneys.1 If you suffer from unexplained fatigue or weakness, abnormal heart rhythms or even muscle spasms and eye twitches, low levels of magnesium could be to blame.

If you’ve recently had a blood test, you might assume it would show a magnesium deficiency. But only 1 percent of magnesium in your body is distributed in your blood, making a simple sample of magnesium from a serum magnesium blood test not very useful.

Most magnesium is stored in your bones and organs, where it is used for many biological functions. Yet, it’s quite possible to be deficient and not know it, which is why magnesium deficiency has been dubbed the “invisible deficiency.”

By some estimates, up to 80 percent of Americans are not getting enough magnesium and may be deficient. Other research shows only about 25 percent of US adults are getting the recommended daily amount of 310 to 320 milligrams (mg) for women and 400 to 420 for men.2

Even more concerning, consuming even this amount is “just enough to ward off outright deficiency,” according to Dr. Carolyn Dean, a medical and naturopathic doctor.

Magnesium Deficiency May Trigger 22 Medical Conditions

Magnesium is often thought of primarily as a mineral for your heart and bones, but this is misleading. Researchers have now detected 3,751 magnesium-binding sites on human proteins, indicating that its role in human health and disease may have been vastly underestimated.3

Magnesium is also found in more than 300 different enzymes in your body and plays a role in your body’s detoxification processes, making it important for helping to prevent damage from environmental chemicals, heavy metals, and other toxins. In addition, magnesium is necessary for:

  • Activating muscles and nerves
  • Creating energy in your body by activating adenosine triphosphate (ATP)
  • Helping digest proteins, carbohydrates, and fats
  • Serving as a building block for RNA and DNA synthesis
  • Acting as a precursor for neurotransmitters like serotonin

Dr. Dean has studied and written about magnesium for more than 15 years. The latest addition of her book, The Magnesium Miracle, came out in 2014 and in it you can learn about 22 medical areas that magnesium deficiency triggers or causes, all of which have all been scientifically proven. This includes:4


Anxiety and panic attacks Asthma Blood clots
Bowel diseases Cystitis Depression
Detoxification Diabetes Fatigue
Heart disease Hypertension Hypoglycemia
Insomnia Kidney disease Liver disease
Migraine Musculoskeletal conditions (fibromyalgia, cramps, chronic back pain, etc.) Nerve problems
Obstetrics and gynecology (PMS, infertility, and preeclampsia) Osteoporosis Raynaud’s syndrome
Tooth decay    

Early signs of magnesium deficiency include loss of appetite, headache, nausea, fatigue, and weakness. An ongoing magnesium deficiency can lead to more serious symptoms, including:

Numbness and tingling Muscle contractions and cramps Seizures
Personality changes Abnormal heart rhythms Coronary spasms

The Role of Magnesium in Diabetes, Cancer, and More

Most people do not think about magnesium when they think about how to prevent chronic disease, but it plays an essential role. For instance, there have been several significant studies about magnesium’s role in keeping your metabolism running efficiently—specifically in terms of insulin sensitivity, glucose regulation, and protection from type 2 diabetes.

Higher magnesium intake reduces risk of impaired glucose and insulin metabolism and slows progression from pre-diabetes to diabetes in middle-aged Americans.5 Researchers stated, “Magnesium intake may be particularly beneficial in offsetting your risk of developing diabetes, if you are high risk.”

Multiple studies have also shown that higher magnesium intake is associated with a higher bone mineral density in both men and women,6 and research from Norway has even found an association between magnesium in drinking water and a lower risk of hip fractures.7

Magnesium may even help lower your risk of cancer, and a study published in the American Journal of Clinical Nutrition showed that higher intakes of dietary magnesium were associated with a lower risk of colorectal tumors.8

Results from the meta-analysis indicated that for every 100-mg increase in magnesium intake, the risk of colorectal tumor decreased by 13 percent, while the risk of colorectal cancer was lowered by 12 percent. The researchers noted magnesium’s anti-cancer effects may be related to its ability to reduce insulin resistance, which may positively affect the development of tumors.

Surprising Factors That Influence Your Magnesium Levels

Seaweed and green leafy vegetables like spinach and Swiss chard can be excellent sources of magnesium, as are some beans, nuts, and seeds, like pumpkin, sunflower, and sesame seeds. Avocados also contain magnesiumJuicing your vegetables is an excellent option to ensure you’re getting enough of them in your diet.

However, most foods grown today are deficient in magnesium and other minerals, so getting enough isn’t simply a matter of eating magnesium-rich foods (although this is important too). According to Dr. Dean:

“Magnesium is farmed out of the soil much more than calcium… A hundred years ago, we would get maybe 500 milligrams of magnesium in an ordinary diet. Now we’re lucky to get 200 milligrams.”

Herbicides, like glyphosate also act as chelators, effectively blocking the uptake and utilization of minerals in so many foods grown today. As a result, it can be quite difficult to find truly magnesium-rich foods. Cooking and processing further depletes magnesium.

Meanwhile, certain foods can actually influence your body’s absorption of magnesium. If you drink alcohol in excess, for instance, it may interfere with your body’s absorption of vitamin D, which in turn is helpful for magnesium absorption. If you eat a lot of sugar, this can also cause your body to excrete magnesium through your kidneys, “resulting in a net loss,” according to Dr. Danine Fruge, associate medical director at the Pritikin Longevity Center in Florida.9 The following factors are also associated with lower magnesium levels:10

  • Excessive intake of soda or caffeine
  • Menopause
  • Older age (older adults are more likely to be magnesium deficient because absorption decreases with age and the elderly are more likely to take medications that can interfere with absorption)
  • Certain medications, including diuretics, certain antibiotics (such as gentamicin and tobramycin), corticosteroids (prednisone or Deltasone), antacids, and insulin
  • An unhealthy digestive system, which impairs your body’s ability to absorb magnesium (Crohn’s disease, leaky gut, etc.)

Calcium, Vitamin K2, and Vitamin D Must Be Balanced with Magnesium

It may seem like you could remedy the risks of low magnesium simply by taking a supplement, but it’s not quite that simple. When you’re taking magnesium, you need to consider calcium, vitamin D3 and vitamin K2 as well, since these all work synergistically with one another. Excessive amounts of calcium without the counterbalance of magnesium can lead to a heart attack and sudden death, for instance. Research on the Paleolithic or caveman diet has shown that the ratio of calcium to magnesium in the diet that our bodies evolved to eat is 1-to-1.11Americans in general tend to have a higher calcium-to-magnesium ratio in their diet, averaging about 3.5-to-1.

If you have too much calcium and not enough magnesium, your muscles will tend to go into spasm, and this has consequences for your heart in particular. “What happens is, the muscle and nerve function that magnesium is responsible for is diminished. If you don’t have enough magnesium, your muscles go into spasm. Calcium causes muscle to contract. If you had a balance, the muscles would do their thing. They’d relax, contract, and create their activity,” Dr. Dean explains.

When balancing calcium and magnesium, also keep in mind that vitamins K2 and D need to be considered. These four nutrients perform an intricate dance together, with one supporting the other. Lack of balance between these nutrients is one of the reasons why calcium supplements have become associated with increased risk of heart attacks and stroke, and why some people experience vitamin D toxicity. Part of the explanation for these adverse side effects is that vitamin K2 keeps calcium in its appropriate place. If you’re K2 deficient, added calcium can cause more problems than it solves, by accumulating in the wrong places, like your soft tissue.

Similarly, if you opt for oral vitamin D, you need to also consume it in your food or take supplemental vitamin K2 and more magnesium. Taking mega doses of vitamin D supplements without sufficient amounts of K2 and magnesium can lead to vitamin D toxicity and magnesium deficiency symptoms, which include inappropriate calcification that may damage your heart.

Tips for Increasing Your Magnesium Levels

One way to really increase your magnesium, as well as many other important plant-based nutrients, is by juicing your greens. I typically drink one pint to one quart of fresh green vegetable juice every day, and this is one of my primary sources of magnesium. Organic foods may have more magnesium if grown in nutrient-rich soils but it is very difficult to make that determination. If you opt for a supplement, be aware that there are a wide variety of magnesium supplements on the market, because magnesium must be bound to another substance. There’s simply no such thing as a 100 percent magnesium supplement.

The substance used in any given compound can affect the absorption and bioavailability of the magnesium, and may provide slightly different, or targeted, health benefits. The table that follows summarizes some of the differences between the various forms. Magnesium threonate and citrate are some of the best sources, as it seems to penetrate cell membranes, including your mitochondria, which results in higher energy levels.Additionally, it also penetrates your blood-brain barrier and seems to do wonders to treat and prevent dementia and improve memory. If you take a supplement, you can use the “bowel test” to determine if you’re taking too much magnesium. Dr. Dean explains:12

The best way to tell if you are getting enough magnesium is the “bowel test”. You know when you have too much magnesium when your stools become loose. This, in fact, may be a blessing for people with constipation… [which] is one of the many ways magnesium deficiency manifests.”

Besides taking a supplement, another way to improve your magnesium status is to take regular Epsom salt baths or foot baths.Epsom salt is a magnesium sulfate that can absorb into your body through your skin.Magnesium oil can also be used for topical application and absorption. Whatever supplement you choose, be sure to avoid any containing magnesium stearate, a common but potentially hazardous additive.

Magnesium glycinate is a chelated form of magnesium that tends to provide the highest levels of absorption and bioavailability and is typically considered ideal for those who are trying to correct a deficiency. Magnesium oxide is a non-chelated type of magnesium, bound to an organic acid or a fatty acid. Contains 60 percent magnesium, and has stool softening properties
Magnesium chloride/Magnesium lactate contain only 12 percent magnesium, but has better absorption than others, such as magnesium oxide, which contains five times more magnesium Magnesium sulfate/Magnesium hydroxide (milk of magnesia) are typically used as laxatives. Be aware that it’s easy to overdose on these, so ONLY take as directed
Magnesium carbonate, which has antacid properties, contains 45 percent magnesium Magnesium taurate contains a combination of magnesium and taurine, an amino acid. Together, they tend to provide a calming effect on your body and mind
Magnesium citrate is magnesium with citric acid, which like most magnesium supplements has laxative properties but is well absorbed and cost effective Magnesium threonate is a newer, emerging type of magnesium supplement that appears promising, primarily due to its superior ability to penetrate the mitochondrial membrane, and may be the best magnesium supplement on the market
– Sources and References



Fantastic and helpful article by Dr. Mercola that Lyme/MSIDS patients should definitely read as we are often deficient in Magnesium.  We also suffer many similar symptoms – which begs the question – could our symptoms be ameliorated by supplementation?

Please discuss ALL supplementation with your health care provider.

Again, I receive no monies and have no ties to any companies.  The following is my personal experience.

My LLMD uses Reacted Magnesium by Ortho Molecular Products with great success.  I’ve been taking this for years now.  It does have the magnesium stearate Dr. Mercola warns about – but remember, it is a common, “potentially” hazardous additive.  It is very hard to find supplements without it and they cost substantially more.

This pdf will explain that this supplement has three forms of magnesium as well as:

Reacted Magnesium provides the additional benefit of highlyabsorbed, Albion® mineral chelates. Albion® is the world leader in manufacturing highly bioavailable mineral chelates, a specialized form of minerals bound to amino acids. This patented process creates organic mineral compounds which use active absorption mechanisms in the gastrointestinal tract to greatly enhance mineral absorption. In a magnesium comparison study reported by Graff et al. at Weber State University, Albion®’s magnesium amino acid chelate had (See Figure 1)[5]:

• 8.8 times greater absorption than magnesium oxide

• 5.6 times greater absorption than magnesium sulfate

• 2.3 times greater absorption than magnesium carbonate

I’m sure there are many other brands equally as effective.  Talk to your provider for suggestions.

For a great article explaining the various ways to test for magnesium deficiency:

Wouldn’t it be sweet if your fatigue, anxiety, insomnia, poor memory, and depression were helped or even eliminated by a simple supplement?

LYME SCI: Developing new tests to identify ALL bacteria in ticks

by Lonnie Marcum

Researchers at Philadelphia’s Drexel University College of Medicine have joined the fight against tick-borne diseases and are asking citizens throughout the US to send them ticks.

Drexel’s Center for Advanced Microbial Processing (CAMP) has developed a state-of-the-art facility using comprehensive high-resolution testing able to detect all bacteria inside of ticks—not just Lyme disease and its better-known co-infections.

The goal of CAMP is to identify emerging pathogens and use that information to find targeted therapies to cure infection and illness.

Garth Ehrlich, PhD, holds professorships in two departments at Drexel—Microbiology & Immunology, and Otolaryngology. He’s also Executive Director of CAMP. He first thought of testing ticks while working on a different project a couple years ago.

Dr. Ehrlich knew about Lyme disease at the time, and started thinking his “Pan Domain Test” might be useful to identify the many different bacteria that are carried by ticks. After looking further, he realized most tick testing done in the past was limited to just a few common pathogens.

The Pan Domain test is unique. It uses “next-generation sequencing” to look for specific genetic markers and is able to detect every bacterium known to science—in just one test. This is different from PCR or ELISA testing, which require a separate test for each suspected pathogen.

In the end, Dr. Ehrlich hopes to have a comprehensive picture of exactly what diseases are carried by ticks in the U.S. Along the same lines, a recent study in France found that 45% of ticks carried five different pathogens. See:

Current tick testing at CAMP is only set up to detect bacteria. The second phase of the study will look for parasites and fungi found in the same ticks. At this time, the researchers want as many ticks as they can get from diverse parts of the country. This information will give a clearer picture of which tick-borne diseases are the biggest risks in different regions.

Dr. Ehrlich’s goal is to bring the test to the public for human testing. He says that if all goes as planned, the bacterial assay could be available in 2018, with the parasite/fungi test about three to six months behind that. He estimates that his Pan Domain testing will cost significantly less than traditional testing for each pathogen. Not only is it cheaper, but the Pan Domain test can detect emerging bacteria, for which there currently are no standard tests.

I talked to Dr. Jaroslaw (Jarek) Krol when I was at ILADS in November. Jarek is the lab manager for CAMP and is deeply involved in the development of the genetic sequencing and analysis of the tick-testing project. He told me that preliminary tick testing has detected up to 60 different bacteria in northeastern ticks. Since co-infections compound illness and complicate treatment, the ability to rapidly detect many infections at once would be invaluable.

Dr. Krol says ticks can be sent in dead or alive. However, if you are going to send in more than one tick, please bag them separately. Ticks can share germs, he says, which can skew test results.

Click here to download the instructions and form for sending your ticks to CAMP:

Important note: CAMP testing is for research only. You will not be sent results of the testing. If you have been bitten by a tick and want to know what pathogens you were exposed to, you can send it to the University of Massachusetts’ TickReport. You should receive results within three business days.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at:

New Lyme Disease Tests Could Offer Quicker, More Accurate Detection

Updated methods would help doctors decide when to prescribe the antibiotics used to clear the infection and help avoid severe long-term health problems
Lyme disease testing
New tests are at hand that offer more accurate, less ambiguous test results that can yield actionable results in a timely fashion.
“Improved tests will allow for earlier diagnosis, which should improve patient outcomes.” – Steven Schutzer
 New tests to detect early Lyme disease – which is increasing beyond the summer months – could replace existing tests that often do not clearly identify the infection before health problems occur.

In an analysis published on December 7 in Clinical Infectious Diseases, scientists from Rutgers University, Harvard University, Yale University, the National Institute of Allergy and Infectious Diseases of the National Institutes of Health and other academic centers, industry and public health agencies say new diagnostic methods offer a better chance for more accurate detection of the infection from the Lyme bacteria.

“New tests are at hand that offer more accurate, less ambiguous test results that can yield actionable results in a timely fashion,” said Steven Schutzer, a physician-scientist at Rutgers New Jersey Medical School and senior author. “Improved tests will allow for earlier diagnosis, which should improve patient outcomes.”

Lyme disease is the most common tick-borne infection in North America and Europe. There are currently over 300,000 cases of Lyme disease annually in the United States alone, and the disease is increasing and spreading into new regions. Lyme disease frequently, but not always, presents with a bull’s-eye rash. When the rash is absent, a laboratory test is needed.

The only FDA-approved Lyme disease tests, based on technology developed more than two decades ago, rely on detecting antibodies that the body’s immune system makes in response to the disease. These antibody-based tests are the most commonly used tests for Lyme disease and are the current standard.

Lyme disease rash
Lyme disease frequently, but not always, presents with a bull’s-eye rash. When the rash is absent, a laboratory test is needed.
One problem, however, is that many people produce similar – called “cross-reactive” – antibodies in response to other bacteria not associated with Lyme disease, which causes confusing results and makes test accuracy more difficult.

“New tests are more exact and are not as susceptible to the same false-positive or false-negative results associated with current tests.” said Schutzer.

Schutzer and his colleagues say more accurate testing would help doctors decide when to prescribe the antibiotics used to clear the infection and help avoid severe long-term health problems. Antibody tests, can take three weeks or more for the antibody levels to reach a point where the tests can pick up a positive result.

Those involved in the paper joined forces after meeting at Cold Spring Harbor Laboratory’s Banbury Center, a nonprofit research institution in New York.  The meeting organized and chaired by Schutzer and John A. Branda, assistant professor of pathology at Harvard Medical School, focused on current Lyme disease tests and new scientific advances made in increasing the accuracy of the diagnosis.

“This meeting and paper resulting from it are particularly significant,” said Jan Witkowski, professor in the Watson School of Biological Sciences at Cold Spring Harbor Laboratory who along with Nobel Laureate James Watson asked Schutzer to lead several symposia. “The participants noted that there are greatly improved diagnostic tests for Lyme disease that can be implemented now, and that the way is open to the development of further tests.”



The article fails to mention these “better tests” and the abstract fails to do so as well, except to say that next-generation serodiagnostic testing, focusing on methods that are currently available or near-at-hand, can now overcome or circumvent many of the past drawbacks.  Abstract found here:

Those of us in Lyme-land have known for decades that better testing is available, it’s just mainstream medicine refuses to use them.  I know of a patient who after testing negative on the CDC two-tiered testing, went to a Lyme literate doctor who used the extended Western Blot from IgeneX and tested positive.  When she showed up with proof in hand, the regular doctor announced that test was faulty, threw it into the trash, and then without permission, retested her again with the CDC two-tier testing.  When the patient showed up at a follow-up appointment, the doctor smugly announced she did not have Lyme because the second CDC test was again negative.

This is the type of thing Lyme/MSID patients are used to and what we advocates warn folks of.  Do not expect a regular doctor, at this point in time, to embrace any testing methods other than the CDC two-tiered testing.  They will even tell you they are FDA-approved which is only half the story.  The FDA does not require approval for labs that do not sell test kits (such as IGeneX).  There are all sorts of laboratory standards and IGeneX is a CLIA-certified high complexity testing lab with on site inspections by state and federal inspectors every two years in states that have the most stringent lab requirements (New York, and California).  They are a small lab specializing in bacteriology and virology – not a monopoly that tests for everything from staph to strep.

Go here for IGeneX accreditations, certifications, and licenses:  You can print these out and attempt to show your general GP; however, I wouldn’t hold my breath despite the concrete evidence.

Rivoting here a moment, I remember attending a public forum at the WI capital where a pediatric doctor called the IGeneX test, “Home brewed,” obviously deriving that particular wording from here:

I assure you, CLIA has tough standards and would not allow a lab to exist if it didn’t cut the muster.  The problem, once again, is that doctors are woefully uneducated and fall back on quick articles like these to pass judgement, rather than studying the issue for themselves.  This lack of due diligence has unfortunately affected thousands of people who are sent home and denied treatment due to a negative test.  

Lyme patients and advocates have been screaming bloody murder for years over the conflicts of interest and CDC testing monopoly.  Go here for the sordid story:   (spoiler alert – they own the patents to the tests)   The CDC commitment to the national study abruptly stopped with no reasons given. However, it appears the CDC is focusing on developing their own newly patented test rather than supporting a group of innovators that compete with the CDC patents.  The CDC denies patent holding despite it being right here in purple crayon.

In conclusion and purposely focusing on the silver lining, this article will hopefully poke the scientific world from its 40 year nap and be a reminder that the outcome of the most prevalent vector-borne disease on the planet has been stymied by a lack of diagnostic testing and that more accurate testing is required.  

Hopefully it will also begin the breakup of the love-affair the CDC has for two-tiered testing.

For more on testing:  by Deanne Haines Jan. 2018

I almost didn’t take my 7-year-old son, Luke, to the doctor right away when he experienced a sudden onset of excessive blinking. He had just started a new school and was having trouble adjusting so I figured the stress of trying to fit in was producing this psychological habit.

I had no idea at the time his tics were the result of a strep infection I never even knew he had. Thankfully, our pediatrician made the correct diagnosis and treatment began immediately. My son was one of the lucky ones.

Kristin Kutz’s daughter, Abigail, came home from her first day of third grade excited and eager to go back. “Best day ever!” she exclaimed. The next day — out of the blue — she cried uncontrollably, insisting she couldn’t go back to school even though she didn’t know why. This dramatic, uncharacteristic behavior kept up for weeks. A nurse eventually found strep in her system.

Extroverted and happy is how Tammy Dalsin described her 10-year-old daughter, Ella, until one November evening — just one week after completing antibiotic treatment for strep. That night — forever burned into Dalsin’s memory — is when Ella abruptly developed strange, obsessive compulsive disorder- or OCD-like behavior, resulting in a four-month nightmare of frustrating doctor visits until finally receiving a diagnosis of PANDAS.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS occurs when a strep infection sets off a misdirected immune response in the child’s brain. Instead of fighting the infection, the immune system attacks the basal ganglia — a part of the brain that controls emotions and movement. This can result in extreme obsessive-compulsive characteristics, tics and other debilitating behavior.

“If it comes out of the blue and you’re struck by how odd it is, that’s a sign it may be PANDAS,” says Susan Swedo, chief of the Pediatrics & Developmental Neuropsychiatry Branch at the National Institute of Mental Health. Swedo and her team first identified PANDAS in 1998.

“Parents tell us PANDAS changes their child so dramatically it’s almost like their child is gone, and somebody else took her place,” Swedo says.

That’s exactly how Dalsin felt in 2011 when Ella all of a sudden couldn’t get herself to walk through a doorway.

“We were going from the garage into the house, and she kept going up and down the steps. She couldn’t make herself go in. She grabbed her hair with both hands and was screaming and crying. She was panicking because she didn’t know what was happening to her,” Dalsin said.

Ella’s symptoms got progressively worse. Her mind reeled with obsessive-compulsive thoughts, such as needing to touch the wall 10 times, otherwise something bad would happen. Ella was wrought with anxiety and could barely function. She missed weeks of school and had to quit hockey — a sport she loved to play. A visit to the pediatrician provided no answers. It wasn’t until the Dalsins did their own extensive Internet research that they discovered a probable cause.

“We read the PANDAS description, and it sounded exactly like her. We were convinced,”  Tammy Dalsin said.

Unfortunately, PANDAS isn’t easily diagnosed.

“It’s harder to recognize,” says Kiki Chang, director of PANS Psychiatry Research at Stanford University Medical Center, “because mild cases get missed and some of the major cases, too, because they get misdiagnosed as primary psychiatric illness.”

Many doctors are still unfamiliar with PANDAS, a relatively new disorder. Others refuse to believe it even exists, not accepting that an infection could be the cause of a behavioral disorder.

That explains the Dalsins’ hellish few months of unproductive doctor visits, including to a neurologist, psychologist and psychiatrist, before a different child psychiatrist confirmed their suspicion of PANDAS. Finally, Ella could start her long road to recovery.

Nine-year-old Abigail’s PANDAS also went undiagnosed by the first physician she saw — a psychiatrist. After the initial visit, he was ready to refer Abigail to a special school for children with severe mental disorders. Abigail’s parents sought a second opinion. This time a registered nurse ran blood tests and found strep in Abigail’s body, recognizing PANDAS was probably the cause of her abrupt onset of crying outbursts and refusal to go to school.

Abigail did return to school more than a month later, but she often ran out of the classroom to hide — one time hiding in a school kitchen cupboard where no one could find her for hours. Abigail’s handwriting skills decreased dramatically, and she started refusing to eat — two common PANDAS symptoms.

Experts say PANDAS affects 1 in 200 children and is “definitely present in every elementary school in the country,” Swedo said. She says it may go unnoticed, though, because children often try to hide their symptoms.

While not every child who gets strep develops PANDAS, family history of autoimmune illnesses and anxiety increase the risk.

PANDAS treatment consists of antibiotics to fight the infection along with cognitive behavioral therapy and/or antidepressants. The longer the child goes with untreated PANDAS, however, the more serious the symptoms and more intense treatment is needed.

“We’re working with Departments of Health in several states to increase awareness by both parents and clinicians. If we can help pediatricians recognize and treat PANDAS in its early stages, it can make a huge difference in that child’s life,” Swedo says.

Take it from me. My son was in the pediatrician’s office no more than 10 minutes when the term PANDAS was mentioned. The immediate antibiotics and simple behavioral therapy were just a blip in the road for my son — who now at age 13 barely remembers the experience.

It’s a very different story for Ella and Abigail, whose PANDAS was not caught until much later. After months of intense therapy, Ella was put on long-term antibiotics and continues to take antidepressants six years later. Diagnosed in October 2016, Abigail still suffers relapses and continues working with health professionals to completely eradicate her symptoms. Her outbursts have decreased, and she’s beginning to eat normally.

Every little bit of progress brings hope to her family that there is life after PANDAS.

Deanne Haines is a freelance writer and mother of three from Wisconsin.

Follow On Parenting on Facebook for more essays, news and updates. You can sign up here for our weekly newsletter. Join our discussion group here to talk about parenting and balancing a career.



A highly respected LLMD here in Wisconsin has found that 80% of his PANS kids also have Lyme/MSIDS (borrelia and other coinfections).  There’s much that is still unknown about this life-changing illness but tick borne illness (TBI’s) can definitely cause or exacerbate PANDAS/PANS.

The take home: do your own research, ask questions, and don’t allow egotistical medical professionals to patronize you by telling you that you or your child are making it all up. Call them to the carpet. If they refuse to help, go elsewhere, to someone who will listen to you and believe you.

For more:

Risk of ticks and Lyme disease a year-round issue in New Brunswick

A New Brunswick tick research expert and a Fredericton man are warning New Brunswickers to check themselves and their loved ones for ticks throughout the winter to prevent Lyme disease. Ticks can strike at any time, even if there’s snow on the ground. Global’s Adrienne South reports.

Research biologists are warning New Brunswickers to be extra cautious when it comes to checking themselves, their loved ones and pets for ticks this winter in an effort to combat Lyme disease.

Dr. Vett Lloyd, a biologist at Mount Allison University biologist, told Global News that the risk of infection is just as prevalent in the winter as any other time of the year.

“We’re seeing more ticks every year and that’s true of ticks in the winter as well,” Lloyd said.

“It’s worse this year than it was last year.  The ticks are not going away.

READ MORE: New blacklegged tick risk areas identified in New Brunswick

Lloyd said it’s essential for New Brunswickers to check themselves for ticks.

Experts I spoke with confirmed ticks are a problem any time of the year and are warning New Brunswickers to check for ticks after spending time outside in wooded areas @Global_NB

 Lloyd said even when there’s snow on the ground the sun can warm parts of the ground where the ticks are hiding just under the surface of the soil.  She said when areas of snow melt the ticks can come up and will be hungry and looking for people or animals to feed from.

“There’s no real off-season any more,” Lloyd said.

“Saying there are less [ticks] than in the spring and the fall doesn’t really help you if the one that was out there found you.  If you’ve been outside you absolutely have to check yourself and make sure there are no ticks hitching a ride in on you.”

Brian McEwing of Fredericton said he was out geocaching on on a mid-November day in 2011 when he was bit by a tick that tested positive for Lyme disease.

McEwing said he was only about a hundred metres into a woodlot area in Fredericton, close to major roadways, when it happened.  Although he didn’t notice it at the time because he was wearing heavy winter clothes, he said the next morning he found that tick half-way burrowed into his left arm.

View image on TwitterView image on Twitter

A Fredericton man wants New Brunswickers to be sure to check themselves for ticks year-round, even if there’s snow on the ground @Global_NB

 After removing most of the tick, McEwing said he visited his doctor who prescribed him a ten-day dose of antibiotics and sent the tick away to a lab for testing.

McEwan said he did some research that suggested 30-days of antibiotics was more effective in treating Lyme and asked his doctor for more antibiotics.  He said he was fortunate to have noticed the tick early and has never displayed any signs or symptoms of the disease.

He said he was surprised to realize that ticks could survive outdoors with snow on the ground.

View image on Twitter

Brian McEwing says he was out for a walk in November 2011 in Fredericton when he was bit by a tick that later tested positive for Lyme disease @Global_NB

“I thought they’d die or hibernate or something, so I was quite surprised,” McEwing said.  “I was shocked.  I just thought once you had snow on the ground…that the chances of picking up a tick would be next to zero, but I found out since [then] they can be active year round.


McEwing said that while the province has announced there are five high risk regions in New Brunswick with denser populations of black legged ticks in the province, he said ticks can be anywhere and people need to be alert.

“I don’t put a lot into this hot spot thing, I think the message really to get out to people is really that you can pick up a tick anywhere.  Whether it’s a hot spot area or not, I think they’re literally everywhere in the province.”

Dr. Lloyd said Lyme disease can also be harder to diagnose in winter  because the symptoms are always “non-specific” and can easily be confused with the flu.

“Certainly if you come down with flu symptoms in the winter, the first thing you are going to think, and probably the first thing your doctor will think is the flu.  That’s unfortunate, we have to get used to the fact that you can get ticks and there’s a risk of Lyme disease year-round,” Lloyd said.



Great, candid article, and frankly an example of what should be circulating about ticks and LD rather than the typical, “Ah, don’t worry, it’s just out East,” or “Ah, it’s winter, ticks aren’t active.”

Ticks will be the last living thing on planet earth.

For more on ticks in cold weather: (great video)

Ticks in general: