Lyme Disease: A Hard Road to Diagnosis and Recovery

Lyme Disease: A Hard Road to Diagnosis and Recovery
A stock photo of tall grass (Katya Austin/Unsplash)
Conan Milner
9/23/2016
Updated:
4/1/2022

When it comes to diseases spread by insects, all the headlines these days focus on the mosquito borne Zika virus. But for decades, Americans have struggled with another vector borne illness that can cause many years of pain and suffering, even death.

Like Zika, Lyme disease seemed to come out of nowhere. Although it was first described by a dermatologist in the Midwest in the early 1970s, a cluster of cases that emerged in and around Lyme, Connecticut, a few years later garnered nationwide attention. Lyme disease has now been documented in nearly every state.

Today, the Centers for Disease Control (CDC) estimates that 300,000 people are diagnosed with Lyme each year in the United States, more than six times the number of annual diagnoses of HIV/AIDS.

Lyme is primarily transmitted by a tick bite, but the mechanism behind the disease is a bacterium called Borrelia burgdorferi. Under the microscope, this organism looks like a long, thin, vigorously wiggling corkscrew. Such curly fry-shaped critters are known to microbiologists as spirochetes. Spirochetes are also the driving force behind syphilis.

Don't get tick bites, and don't have sex with someone who has Lyme. It's also sexually transmitted just like syphilis is. It's also transferred by other biting insects. People have told me they've developed [bulls eye] rashes from mosquitos, horseflies, and sand fleas. (Kyle Besler/Shutterstock)
Don't get tick bites, and don't have sex with someone who has Lyme. It's also sexually transmitted just like syphilis is. It's also transferred by other biting insects. People have told me they've developed [bulls eye] rashes from mosquitos, horseflies, and sand fleas. (Kyle Besler/Shutterstock)

For those infected with this bacteria, Lyme disease can feel like a really bad flu, with symptoms that include headache, facial paralysis, joint pain, fatigue, super sensitivity to light and noise, and depression. If left untreated, spirochetes worm their way deeper into the body, causing brain and spinal cord inflammation, cognitive dysfunction, hepatitis, and heart palpitations. Symptoms can become severe, even crippling, and are often mistaken for other diseases. It can take years before patients receive proper treatment.

If you just read official reports, Lyme doesn’t seem like much to worry about. If a patient presents a bullseye-shaped rash (a sign typical of a tick bite), doctors simply call for a Western blot test and ELISA (enzyme-linked immunosorbent assay) test to detect Lyme antibodies. Once Lyme is positively identified, treatment seems simple.

“Lyme disease can be treated successfully with a few weeks of antibiotics,” states a recent report from the CDC.

However, for many Lyme sufferers, the road to diagnosis and recovery is far from easy.

Dr. Ann Corson knows firsthand what a profound challenge Lyme can be. Corson was an emergency room physician who became an expert in tick-borne diseases after her son contracted Lyme in 2001.

Today, Corson specializes in treating the tough Lyme cases other doctors aren’t able to resolve. She uses herbs, homeopathics, lifestyle changes, and other unconventional techniques. She is a member of the International Lyme and Associated Diseases Society (ILADS), a group that is often at odds with the Infectious Disease Society of America (IDSA).

Epoch Times talked to Corson about her experience with treating Lyme disease, and why the standard of care fails so many patients. Answers are edited for clarity and brevity.

Dr. Ann Corson
Dr. Ann Corson
Epoch Times: How did you get involved treating Lyme disease?
Dr. Ann Corson: My son was dying and no one could tell me why. I couldn’t figure it out. I took him to a lot of other doctors and they tried to give all these kinds of medicines which were actually poisonous, or they would tell me that it was all in his head.

I remember my son had had a deer tick bite. He came to me and I took it off, but he never had a rash. He had no symptoms at first, but then he became insidiously sick. I thought about Lyme disease, but I had done the ELISA test three times and it was negative.

Then I went to see a lecture by Dr. Joseph Burrascano. He is the first doctor to really figure this whole thing out. I learned more in that lecture than in the prior 10 years of my medical career. He opened a whole new door for me about tick borne diseases.

I was curious if he would let people observe what he was doing, and within a few weeks I was precepting in his office.

I learned a tremendous amount from him, came home, and two weeks later opened my own practice treating tick borne diseases. By April 2004 I was invited to do my first lecture about pediatric Lyme disease. I hit the ground running and never looked back. I think I’ve given up to 65 lectures: to the medical community, community organizations, the Pennsylvania Department of Conservation and Natural Resources, and the Pennsylvania Health and Human Services Committee.

My son’s story became very well known in the Lyme community. We were a beacon of light for my patients, showing them that they can get better, and move forward in life.

My practice has been very busy. I treat people from all over the world.

Epoch Times: Why is there so much controversy over treatment and diagnosis?
Dr. Corson: Back in the 1970s and 1980s, all of the academicians were saying the same thing Dr. Burrascano was saying: that patients needed long term treatment, and that it wasn’t easily treated with just three weeks of antibiotics. But sometime after the Dearborn Conference in 1996 that established the ELISA and Lyme Western blot testing criteria, all of a sudden they did an about face and turned against the clinicians. They started saying Lyme was easy to treat and easy to diagnose, and that if you don’t have a positive ELISA you don’t have Lyme. But the literature has shown the ELISA misses two thirds of the people that actually have Lyme.
Borrelia (Juan Gaertner/Shutterstock)
Borrelia (Juan Gaertner/Shutterstock)
At Stony Brook in New York, there is a neurologist named Patricia Coyle who had a patient who kept coming back with recurrent Lyme in the nervous system: neuroborreliosis. Despite repeated courses of oral and IV antibiotics over five years, the patient continued to relapse.  Dr. Coyle did a spinal tap on this fellow 13 times, poor guy, and nearly every single time she found evidence of Borrelia in his spinal fluid but only twice did she find antibodies against the organism. Why would the neurology people say you have to have antibodies against Lyme in order to prove neuroborreliosis when she proved that this wasn’t the case?

In another example, there was a textbook for infectious diseases of the infant and newborn where a doctor by the name of Tessa Gardner wrote a whole chapter on congenital Lyme disease. Because Lyme is like syphilis—it goes from mother to baby. Gardner wrote a whole chapter about the passage of Lyme to the baby in 2001. When the next edition of the book came out, they removed her chapter.

When the Lyme disease community had a committee meeting with the U.S. Health and Human Services, we presented I don’t remember how many hundreds of documents from the peer reviewed medical literature that support our position.

It’s just a small number of people in control who are trying to spread their lies and rhetoric, and they’ve successfully done that. Lyme doctors in many states are actually persecuted by medical boards. Burrascano was raked over the coals in New York, as well as several other doctors in other states.

Epoch Times: Why would officials want to make people believe Lyme is so easy to treat and diagnose?
Dr. Corson: It comes down to money. Insurance companies don’t want to pay for long term antibiotic treatment. Workers compensation doesn’t want to pay for the electric linemen who get Lyme disease walking near the woods.

The CDC misleads people. It is very difficult to kill this organism. It has a life cycle of about four weeks, and it’s very fastidious. It has multiple ways of evading the immune system which are just elegant. You can’t kill something that has a month lifecycle with three weeks of antibiotics. It doesn’t work. What the “powers that be” say about it is not correct.

Epoch Times: One story I read talked about a woman who had to see 10 doctors before she found out she had Lyme disease. What makes Lyme so hard to diagnose?
Dr. Corson: That’s very common, and it’s because the tests they use are very, very poor. The ELISA test is the first screening, and it misses two thirds of the people that have Lyme, and the antibody response is highly variable.

Every system in the body is affected by Lyme disease. It’s a multisystem illness. It can manifest differently in different people.

Lyme disease is not the infection of just one organism. Vector borne diseases come in groups. Ticks, mosquitoes, biting horseflies and a lot of other bloodsucking insects inject all kinds of garbage into the body. They give you not only Borrelia burgdorferi, they give you Babesia, Bartonella, and Ehrlichia [co-infections]. They give you all kinds of viruses, parasites, nematodes, you name it. People actually have a polymicrobial infectious disease.

Lyme damages immune system function. It disables important parts of the immune system so the body isn’t able to fight against a lot of other common chronic infections. That’s why people with chronic Lyme disease often have chronic Epstein Barr infection, chronic CMV infection, chronic herpes infection, and chronic shingles.

Epoch Times: It reminds me of AIDS—another disease which evades the immune system and makes you more susceptible to other infections.
Dr. Corson: It’s like AIDS, but it’s not a virus. It’s a complicated bacteria and it takes a lot longer than AIDS to kill you. It’s a long-term degenerative disease.

Whether we ever successfully eliminate it, I don’t know. Lyme probably stays with you your whole life, but if you eat well, exercise well, stay strong, and maintain a good strong immune system, you can keep it locked away and tamped down. It’s only when things go awry that it’s able to rear its ugly head and become active again. Patients need to know this.

So I don’t think there’s a cure, there’s only management.

Epoch Times: How bad can Lyme disease get? Can it really be fatal?
Dr. Corson: Lyme is associated with all neurodegenerative diseases: Alzheimer’s, MS, ALS, Parkinson’s.  People die from these every day. Lyme infects the heart and all organ systems and can lead to deaths that are attributed to other causes.  Lyme can cause miscarriages, stillbirths and SIDS. Many, many people have died of Lyme disease, even young people.  Many have also committed suicide to end their agony when unable to find help from the medical community.
Epoch Times: You single out mold as an important factor to target when people are trying to get their Lyme disease under control. What is it about mold that exacerbates this illness?
Dr. Corson: I’m not talking about mold that is growing on the trees in the forest. I’m talking about mold that grows inside water-damaged buildings.

A quarter of the population tends to develop chronic inflammatory immune responses with exposure to mold toxins. These are the same group of people genetically who are more susceptible to become chronically ill with Lyme. It’s a double whammy.

The problem with a lot of doctors is that they don’t look at all the things that create chronic illness. If a patient is living in mold, where they are breathing in these toxins and particulates all day and night, if their work, home, or school is moldy, we’re never going to be able to reduce the inflammation and calm the firestorm in the immune system to get it to help us kill the Lyme. You need to remove the patient from the moldy environment. You need to remove the mold toxins from their body, you need to reduce the inflammation, and then you can go after the bugs.

What I do is really complicated because of the type of patients I see—the sickest of the sickest—but for the garden variety Lyme patient, as long as they’re treated adequately and for long enough, they do okay. You need to be treated until you have no more symptoms. Period. You need to be treated for about two months until you’ve had no more symptoms.  If you get a cold or a flu, have a surgery, or an emotional stress and Lyme symptoms come back, then you need to be treated again.

Epoch Times: Tell me a bit about your protocol. How did you come up with it, and what got you interested in natural medicines for treating Lyme disease?
Dr. Corson: I use all the tools that are available to me, which are allopathic medicines, herbs, homeopathics, and nutraceuticals. I use everything, and try to use what works best for each individual patient.

I got into this when people’s bodies started rebelling after being on antibiotics after three or four years. Their guts were crying uncle because they were still sick. I had a patient ask me about some homeopathic products that she really liked. So I investigated that company, found the importer, and a lot of educational materials.

Then I learned about German Biological Medicine, which is really not that well known outside the naturopathic and chiropractic communities, and some of the integrative doctors in Europe. It just resonated with me because it made so much sense. I realized that this was a better, safer, and more logical way of treating people. Because you don’t just chase surface symptoms, you are trying to go to the root cause and untie that knot down deep. Then the surface fixes itself.

I tell my patients, we aren’t just going in to battle. We’re not just trying to kill things, which is what an antibiotic will do. I want to pick the battle ground myself so that I have the advantage. I want to choose which soldiers I send into the battle. And after the battle I have to clean up all the debris, carry away the dead bodies, chop the debris into pieces that can be carried away, wash the battlefield down, get rid of all the gunk, then allow it to grow green grass and wildflowers again.

That’s the analogy I use to explain to patients what it is that I do. I came to this by trial and error, using my years of practice experience and clinical judgment.

My protocols are very individualized for each patient. I do a detailed review of their symptoms, a physical exam, and then I do my assessment, and I think about multiple factors that can influence a patient: different kinds of toxins, different kinds of infections, different kinds of allergies and inflammatory dysfunction, structural problems (which I may need to refer them out for), and environmental problems. I also look to see if they have any metabolic derangements. Do they have genetic set points that make it difficult to get rid of toxins?

For example, a lot of people have very sticky blood because of the inflammation and infection, and the vast majority of mainstream medicine doesn’t recognize that. They don’t recognize this until someone has a blood clot, pulmonary embolism, stroke, or a heart attack. A lot of this can be relieved by giving people enzymes to dissolve away that excess stickiness. It’s a huge part of what I do.

Of course, you also have deal with the emotional and spiritual stuff. People have to understand that they can’t blame the rest of the world for their problems. They need to start looking at themselves, and realize they can only improve themselves. They can’t control other people. They are never going to get well if they continue to blame the world for their misfortunes. I do that kind of coaching as well.

Epoch Times: It sounds like this is a treatment you have to engage in at every level.
Dr. Corson: Yes, I’m engaging from the microscopic, chemical level all the way up into the spiritual level. That’s what I think good doctors should do.
Epoch Times: How can we prevent Lyme?
Dr. Corson: Don’t get tick bites, and don’t have sex with someone who has Lyme. It’s also sexually transmitted just like syphilis is. It’s also transferred by other biting insects. People have told me they’ve developed [bulls eye] rashes from mosquitos, horseflies, and sand fleas.
If you find a tick, it should be removed properly. You’ve got to be careful not to squeeze the contents of the tick back into you as you remove it. Then you should clean the area, contact your doctor, and look for signs and symptoms.

The problem is a lot of people don’t develop signs and symptoms right away. And they also develop signs and symptoms they don’t realize are related to Lyme. A little kid gets a tick bite, and a couple months later he has learning problems in school, anxiety at night, or behavioral problems. They don’t ever associate that with Lyme disease, and they end up taking him to a psychiatrist and putting him on toxic medicine when he actually has an infection in his brain.

A lot of this is about education and understanding that there are many symptoms of it. Lyme is one of the most important things that needs to be ruled out when anybody has new and unexplained symptoms. It’s in the differential diagnosis of just about anything.

Epoch Times: If someone suspects they have Lyme disease, what do you recommend they should do?
Dr. Corson: They should find a doctor who is willing to listen to them, and willing to do testing at labs that are skilled in doing the testing. If they just use the regular LabCorp or Quest ELISA tests, you’re only going to get a one in three chance of getting a positive test if you have Lyme.

Go to a doctor who is willing to treat you empirically based on your clinical symptoms, which is what the CDC says anyway: this is a clinical disease, not a laboratory based disease.

If you get better with treatment, your doctor should continue to treat you for about two months after you have no more symptoms.

You have to educate your doctor and play a little bit of hard ball with them, and say, “If you missed the Lyme disease in me and I go on to develop all kinds of chronic problems because you didn’t treat me appropriately, I’m sure you will not want to be sued for malpractice.”

You also need to get your head out of the sand and read the literature about this yourself.

Conan Milner is a health reporter for the Epoch Times. He graduated from Wayne State University with a Bachelor of Fine Arts and is a member of the American Herbalist Guild.
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