Archive for the ‘Treatment’ Category

Lyme in Kenosha

http://www.kenoshanews.com/life/health/nancy-carlson-the-little-bite-cost-me-quite-a-lot/article_6b13c933-0b15-558e-b6ae-90f509a7b3e0.html

Nancy Carlson: ‘The little bite cost me quite a lot’ says Hawthorn Hollow naturalist

  • By JULIA FAIR jfair@kenoshanews.com
  • Aug 22, 2017

A tick clung to Nancy Carlson’s hip after a workday spent outside in 2013.

It wasn’t abnormal.

“I pull ticks off all the time, it’s not a big deal,” Nancy Carlson, a naturalist at Hawthorn Hollow Nature Sanctuary and Arboretum on Green Bay Road, said.

She was taught as a naturalist that a bull’s-eye rash should raise concern about contracting Lyme disease. When she was bitten, it never appeared.

Weeks later joint pains and flu symptoms took over her body. She tested positive for Lyme and was prescribed antibiotics.

“But it wasn’t enough,” Carlson said. “After that I was never better.”

Breathing and heart issues landed Carlson in the hospital twice during her treatment, due to symptoms caused by the toxins building up in her body as the Lyme-causing bacteria deteriorated.

She saw a rheumatologist, an endocrinologist and a neurologist, trying to get the best treatment for her Lyme.

“None of those knew the truth about Lyme disease,” she said.

The average patient sees five doctors over two years before being diagnosed, according to the International Lyme and Associated Diseases Society, a nonprofit dedicated to educating the public and doctors about proper Lyme treatment. It also states 40 percent of Lyme patients end up with long-term health problems.

She started feeling relief when she met Dr. Debra Muth, a Lyme-literate doctor in Waukesha. Her practice has more than 5,000 patients — 60 percent who are there for Lyme.

Carlson went on a treatment regimen specific to her needs.

Reaching into her pocket this summer, Carlson counted the midday pills she takes as part of her routine to manage her chronic Lyme, spurred by that 2013 tick bite.

Throughout the day, she takes 19 pills to treat the disease and co-infections.

When it all started, she didn’t know anything about Lyme disease.

“Take a course of antibiotics and I’ll be back to good,” she said. “That’s what the doctor thought as well.”

Living with Lyme

“It’s hard for doctors to diagnose but I knew that I had it,” Carlson said.

Carlson suffered the most a year after her Lyme diagnosis, causing her to take sick days from her office — the outdoors — which she now sees as her sanctuary.

Horrible headaches and sensory issues kept Carlson from going to the movies, enjoying Summerfest or simply scrolling on a computer screen.

“All of a sudden you’re changing the way you live your life based on your illness,” she said, holding her wrist bound by a brace to control the nerve pain.

Carlson learned what overstimulated her through trial and error. Going to the grocery store now, even though her Lyme and co-infections are under control, is out of the question.

Now she suffers mostly with her co-infections, which include bartonella, Rocky Mountain spotted fever and babesia.

“Those are the parasites I’m struggling with — that we know of,” she said.

Carlson can’t afford all of the tests that could reveal what else threatens her health.

“The little bite cost me quite a lot,” she said. “Not only in health but financially.”

Carlson has $20,000 in medical debt in addition to the $20,000 out of pocket she’s already paid.

Insurance companies are wary to cover chronic Lyme treatment, she said.

No insurance coverage

Some of Muth’s other patients were forced to take on second and third mortgages to pay for their physical pain relief and treatment.

Lyme disease keeps most of her patients from working, making it hard to afford treatment, Muth said. But treatment could have prevented the disease’s development.

Paying for that treatment is difficult as bureaucratic organizations, societies and federal medical guidelines clash.

Insurance companies often follow what the Infectious Disease Society of America, a medical association that represents health care professionals who specialize in infectious diseases, recommends for Lyme treatment, Muth said.

That organization says 30 days of antibiotics should treat Lyme disease, Muth said, but the International Lyme and Associated Diseases Society support long-term treatment.

The National Guideline Clearinghouse, a federally-run database of clinical practice guidelines, agrees with the later and removed the Infectious Disease Society of America’s guidelines from its website in February 2016.

Many doctors remain unaware of that change, Muth said.

“It’s very difficult to get education out to physicians unless it comes from a pharmaceutical company,” she said.

The insurance company issue could be political, Muth said.

“No one wants Lyme to be a problem in their state for financial and fear reasons,” she said.

Advocacy

Carlson still works as a naturalist, spending every day outside in the same environment in which she was bitten.

Keeping a health journal helps track of her symptoms, which she reports to Dr. Muth during checkups every three months.

She goes to city council meetings in Racine to get tick awareness signs put up in local parks and beaches to keep people alert.

“Once I got through the hardest part of being sick, I felt like it was my job to bring awareness to the community,” she said.

Part of her job is to educate children about the environment, and she always mentions to check for ticks.

“Education is the key to getting this under control,” she said.

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John Bush: Teen saw many doctors before finding help for chronic pain

  • By JULIA FAIR jfair@kenoshanews.com
  • Aug 22, 2017

 

The right doctor changed everything for John Bush.

Since October of 2016, the Kenosha teenager had had a series of health issues, shifting his life filled with musical theater and academics to a life of constant doctor visits. Doctor after doctor told his family what they thought would relieve his pain, but nothing sufficed.

If he had waited four more months before seeing yet another doctor, he could’ve faced paralysis.

That’s the usual waiting period to see Dr. Casey Kelly, a Lyme-literate doctor in Chicago.

But when John’s mom, Laura Bush, called the office seeking treatment for her son, the receptionist had good news.

“You’re really lucky,” the receptionist said. “Someone just canceled a new patient appointment; can you be here tomorrow at 2 p.m.?”

Developing diagnosis

About a month after his colonoscopy and initial Lyme diagnosis, John had finished his 30 days of antibiotics, but his body continued to scream with pain.

“They’re going to tell me it’s not active in my body anymore,” John said to his mom when she made an appointment to see another doctor, a rheumatologist, who specializes in joint pains and autoimmune diseases.

His stiff muscles made it difficult to get out of bed each morning and the flu-like symptoms persisted.

Holding the songbook at church made his hands and neck ache with pain, a common sign of chronic Lyme.

It was supposed to be gone. That’s what his doctors kept telling him.

According to the Centers for Disease Control and Prevention, there are no accurate tests to prove that Lyme has been eradicated from the body.

John’s frustration grew with his doctors’ seemingly low knowledge of what was happening to his body. His first doctor thought it might just be mononucleosis.

Finding the book “Why Can’t I Get Better?” by Dr. Richard Horowitz changed John’s perception of Lyme.

Horowitz wrote rheumatologists often think the disease is depression and anxiety if the antibiotics fail. John felt the doctor visit was going to be useless.

The doctor’s explanation of John’s chronic pain resembled Horowitz’s prediction.

Laura Bush asked to see the Lyme doctor in the building.

“I am the Lyme doctor,” he replied.

They left quickly.

The right treatment

John shared his entire medical history with Dr. Kelly, leading her to believe he was bitten by a tick 11 years ago.

The body doesn’t always recognize the bacteria as an active disease when it’s first transmitted. That leaves it dormant for years — sometimes presenting itself as other health conditions — until it’s stirred up, Dr. Debra Muth, a Lyme-literate doctor in Waukesha, said.

John’s symptoms surfaced when he started taking doxycycline for his acne.

He had yet to be diagnosed with Lyme. The antibiotic went to work, not only on the bacteria causing his acne, but on the dormant Lyme-causing organisms in his body. As they died off, they unleashed toxins, creating John’s symptoms.

Throughout his life, John had been diagnosed with attention deficit disorder, obsessive-compulsive disorder, oppositional defiant disorder, motor impairment, concussions and a slew of stomach issues.

Kelly told John she thought those diagnoses were caused by the bacteria festering in his body, he said.

John was skeptical about the treatment until he spotted Dr. Horowitz’s book in the waiting room, which instantly calmed him.

John was in Chicago four days a week for three weeks for a mixed-medication plan.

That treatment included mass doses of vitamins, infusions of medicine and cleaning toxins from his blood using a UV light.

Living with Lyme

One January morning, months after his initial diagnosis and attempt at treatment, John realized he needed help walking one morning.

With a grimace plastered on his face, his stiff muscles walked into his basement to fetch his grandpa’s wooden cane.

His parents thought he was being theatrical at first, citing John’s involvement in local theater, but quickly saw the look on their son’s face and knew it was real.

Clutching his newly bought blue plastic cane, John steadied himself walking the halls of Bradford High School.

He felt his classmates’ and teachers’ eyes on it, not quite understanding why he had it while he was still trying to understand his disease, too.

“I didn’t want anyone to feel like they owed me anything,” John said, recalling how he attempted to minimize his suffering.

During choir practice, he danced with the cane through his muscle pains while he struggled with brain fog, making it hard to memorize the songs he loved performing.

“I didn’t want people to see me as disabled, which I was,” he said.

Looking back, he recognizes he was trying to fight reality.

Eventually, John had to drop most of his classes. School became too much.

The Lyme drained his energy and took a toll on his family’s finances.

“How do you go about something that’s difficult to begin with and how do you wrap the budget around it?” he said.

Finances

The insurance company wouldn’t cover the cost of John’s treatment.

After the first visit with Kelly, they left with about $400 worth of supplements. So far, his family has paid $12,000 out of pocket for his treatment.

“I don’t know how my parents are doing it, because it’s not cheap,” John said.

His initial medical routine included a strict diet with seven medications at breakfast, two at lunch, six at dinner and another six at bedtime.

After two weeks on the new routine, John ditched his cane.

Advocacy

Now, six months removed from his initial diagnosis, John speaks at Rotary clubs to share his story.

He wants to shift the conversation so others get treatment quicker at lower costs.

“It’s really important for people to realize that we have an epidemic in this country and in the state of Lyme disease,” he said.

http://www.kenoshanews.com/life/health/the-reality-of-lyme-disease/article_702bd2f8-5152-5001-9736-6eeba62b7bb8.html#tncms-source=article-nav-next

The reality of Lyme disease

  • By JULIA FAIR jfair@kenoshanews.com
  • Aug 22, 2017

Lying in a hospital bed at Aurora Medical Center, John Bush, 17, had an empty stomach with a bag of saline next to him, waiting for his colonoscopy.

He looked at his mom, Laura Bush, who seemed to be hiding her worry as they waited.

John was supposed to be studying for his three college-level classes at Bradford High School. He should have been reviewing lyrics for choir or helping the student government club. But a series of health problems — stomach pains, stiff muscles, extreme flu-like symptoms, bloody feces and losing 20 pounds — had him in that hospital room.

An hour before the procedure, the doctor entered the prep room.

 

“The blood test we took showed you do have Lyme,” he said.

John didn’t understand. He didn’t remember being bitten by a tick — the common carrier of Lyme disease.

Most don’t.

Defining the disease

Lyme disease is a bacterial infection commonly transmitted by the deer tick, but recent research shows it can come from any tick, said Dr. Debra Muth, a Lyme-literate doctor with Serenity Health Care Center in Waukesha.

Chances of being bitten are greater this summer because of Wisconsin’s warm winter, said Pringle Nature Center naturalist Valerie Mann.

“More of (the ticks) were able to survive,” she said. “Winter usually kills most of them.” (please see comment at end of article)

About 50 percent of all ticks carry Lyme disease. It only takes about 10 minutes of bite-to-skin contact for the disease to spread, Muth said.

The signs, diagnostic tests and treatment options for Lyme have varying degrees of success.

A bull’s-eye rash on the infected area used to be considered the warning of Lyme disease, but fewer than 20 percent of those infected get that rash, Muth said.

Those who are promptly tested for Lyme have a 50 percent chance of receiving a false negative result, Muth said.

Treatment variations

Traditional doctors prescribe up to 21 days of antibiotics to eradicate the bacteria, while Lyme-literate doctors treat it for up to three years.

Muth compares Lyme disease to syphilis, a sexually-transmitted disease that requires constant treatment.

“That is the same mindset that a Lyme-literate doctor has,” she said.

Muth uses a combination of antibiotics, herbal treatments and alternative medicine for treatment.

Lyme-literate doctors treat co-infections in addition to the bacteria that causes Lyme. Co-infections include bartonella, which can cause neurological disorders, to Rocky Mountain spotted fever.

Lyme disease can be hard to cure if other infections are not treated at the same time, according to the International Lyme and Associated Diseases Society, a nonprofit dedicated to educating the public and doctors about Lyme treatment.

Sometimes, antibiotics are not able to rid the body of the bacteria that cause Lyme disease to persist.

The bacterium changes from its original corkscrew shape into alternative shapes, making it hard to reach with antibiotics, Muth said. A protective cyst also grows around the bacterium, literally blocking the treatment, she said.

Until recently, the Centers for Disease Control and Prevention hasn’t seen Lyme as a major problem, Muth said. The CDC estimates there are 300,000 new cases each year.

Wisconsin had 46 cases in 2015, eight in Kenosha County, according to the Wisconsin Department of Health.

That could all be under-reported, Muth said, especially given the likelihood that Lyme disease is misdiagnosed and mistreated.

Misdiagnosis

When the disease isn’t treated properly, the consequences are staggering.

Extreme mishandled cases of Lyme have been misdiagnosed as multiple sclerosis — an unpredictable, disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and the body, often leaving its victims paralyzed, Muth said.

Two patients came to her in wheelchairs, unable to walk long distances. Two years of treatment restored full mobility, Muth said.

That misdiagnosis is caused when an MRI scan shows signs of multiple sclerosis when, in reality, it’s truly Lyme disease, Muth said.

A spinal tap is used to differentiate between Lyme and MS, but most patients never receive one.

Muth’s patients were shocked when they found out their health problems plaguing them for years were Lyme all along.

“Most of them are extremely frustrated that no one thought of that before,” Muth said.

____________________________________________________________________________________________

 

**Comment**

Great articles by Kenosha News.  Just want to point out this information to balance the idea that supposedly “warm winters” are causing the tick problem:
In the winter, some tick species actually move indoors, while other species make a type of “internal antifreeze” to survive during the winter months. This is often why veterinarians will recommend year-round tick prevention.
https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/  Please read entire article – its’ that good.  In essence, this tick expert states emphatically ticks are ecoadaptive, and tolerate wide temperature fluctuations.
Think of ticks as infected cockroaches on steroids that can infect you.

Category:

Activism, Lyme, Treatment

Dr. Liegner: Guidelines Used By Managed Care Causing Lyme Deaths

https://on-lyme.org/en/sufferers/lyme-stories/item/259-guidelines-adopted-by-insurers-contributory-to-death-of-lyme-patients

Guidelines Adopted by Insurers Contributory to Death of Lyme Patients

Written by

Liegner

Dr. Kenneth Liegner has been on the forefront of the Lyme Wars for thirty years. In this fourth interview of the ‘Teike takes on Lyme‘ series, he is asked about his extensive experience in the field of Lyme treatment and how the rise of ‘managed care’ has influenced choices of treatment options.

 

Can you introduce yourself, how did you get involved with Lyme’s disease.

I am a physician with training in internal medicine, anatomic pathology and critical care medicine. After completing a Fellowship in Surgical Critical Care Medicine and one year as an attending on the Surgical Critical Care Service at the Washington Hospital Center’s MedStar Unit (trauma & post-open heart) I relocated to Westchester County, New York (where I had gone to medical school: New York Medical College) to start a private practice.

I knew almost nothing about Lyme disease at that point, only knowing the ‘name’ of the disease. Unwittingly, I had ‘plunked’ myself down in the heart of a (then) burgeoning epidemic of Lyme disease. Like any internist at the time, I started seeing patients who were contracting Lyme disease. I found they did not ‘behave’ the way the ‘books’ said they ought to.

Professor Zhang mentioned the case of Vicki Logan in his interview. Can you tell about her case in a way the reader can understand?

One example of this, was the case of Vicki Logan, a pediatric ICU nurse who consulted me in the late 1980’s. She had developed a gait disturbance and had seen many neurologists. She had an unexplained chronic meningitis with no diagnosis. She gave no history of tick bite or rash, but had grown up in a tick-infested area of Westchester County (Goldens Bridge). I studied her for a year and could not make a diagnosis despite intensive study using the best tools available. I decided to treat her for the possibility that she might have Lyme disease since I could not exclude the diagnosis.

She had spinal taps before and after 3 weeks of intravenous cefotaxime which made no difference clinically in her status and did not improve her meningitis. For good measure, she was treated also with 4 months of minocycline, again, this made no improvement in her condition. She continued to slowly deteriorate and she contacted me about one year later and begged me for another spinal tap. At that point I had started working with the Centers for Disease Control in Fort Collins, Colorado. They supplied me with BSK-II culture media so when I tapped her December of 1991, I also cultured her for borrelia.

A few weeks later I received a telelphone call from an excited David Dennis of the CDC to let me know spirochetes were growing from her spinal fluid. These were later shown to be B. burgdorferi. Vicki was home and wheel-chair bound and had no pets. It is very unlikely she was infected or re-infected with Lyme disease between the time she had been treated and when she had the spinal tap from which Bb was isolated.

When the diagnosis was established, she was treated with 3 months of a ‘pulse’ regimen of cefotaxime IV and her spinal fluid findings normalized and her condition modestly improved. Her case made the front page of the New York Times Science Times, August 1993.

Her illness occured during the same time that the system of managed care was implemented in the USA. How did that matter?

Lyme disease is the first infectious disease of epidemic proportion to makes its appearance after the advent of ‘managed care‘. Vicki’s access to care was definitely impeded by this ‘entity’ devised by government and corporations ostensibly to improve care but mainly to constrain costs. It became almost impossible for her to receive the treatment she required.

The care she required was deemed ‘experimental’ and thus not reimbursible. Whenever she had been able to be treated with 3-6 months of intravenous antibiotics, her condition improved in objectively measurable ways. When not thus treated, her condition deteriorated.

Can you indicate the difference of how Lyme was managed in comparison to other diseases from the viewpoint of managed care?

Since the Infectious Diseases Society of America and the Centers for Disease Control promote the notion that ‘chronic Lyme disease does not exist’, insurers using ‘managed care’ as a tool, have felt justified to deny reimbursement for care for long-term antimicrobial treatment. Likewise, disability insurers also often deny claims for those disabled by the effects of chronic Lyme disease, a ‘non-existent’ condition. This is in striking contrast to the care of persons with HIV/AIDS, an acknowledged and accepted medical illness for which medical and disability insurance coverage is assured.

You did not only deal with the problems of Vicki’s treatment you also ran into problems with the system, do you see ways to improve the mechanisms of that system so that they will work for people with Lyme or other diseases where lack of true consensus plays important role?

The ‘system’. Well there are many issues with the ‘system’ in general and some ‘specific’ to the Lyme problem. The ‘corporatization’ of medical practice is an over-rideing issue affecting medicine widely. It happened to come to ascendence as Lyme was emerging as a new infectious disease. I highly recommend The Social Transformation of American Medicine by Paul Starr who accurately predicted ‘the coming of the corporation’ in medicine.

So, what used to be a personal relationship between physician and patient, now has the intrusion of 3rd parties, including insurance companies, government and ‘vertically integrated’ health care systems (VICS). With the compulsion to use EMRs (Electronic Medical Records) by governments and insurers and VIHCS, algorithms of care are highly ‘systematized’ and ‘drop-down’ menus link to references for the peer-reviewed literature.

However, it is important to ask who selects the literature? How is ‘consensus’ developed? To what extent are practice guidelines based on good evidence? How much of it is ‘expert opinion’ without a lot of data? How much does conformance to ‘the average’ actually undermine the ‘specifics’ of individual patients? Then, when you get guidelines as in Lyme disease where there is wide disagreement about basic assumptions, then you really get in to difficulties.

And especially so, if the authors of these guidelines are covertly acting as ‘expert’ consultants to insurance companies in setting their determinations of ‘medical necessity’ vs. ‘experimental care’ in order to limit their financial liability to their insureds. Richard Blumenthal’s investigation of the process involved in the creation of the 2006 IDSA Lyme disease guidelines exposed these kinds of problems.

Furthermore, there is an incestuous relationship between the CDC and the IDSA, with many academic experts in positions of power having been with the E.I.S.: Epidemiology Intelligence Service of the CDC. There is also an ideology, which also happens to cohere (as is not uncommon with ideologies) with the economic interests of the adherents of the ideology. These issues will be remedied, if at all, through shifts in where the ‘power’ lies. Are patients able to change power relationships? Can they do so through the legislative process?

As more and more individuals in society at all levels become affected and realize the difficulties which Lyme disease actually poses, there sometimes ensues a ‘tipping point’ where legislators see that it is in their own interests and that of their constituents to compel change. This happened in the State of Massachusetts, where legislation was proffered by both houses of the legislature compelling insurers to pay for treatment prescribed by treating physicians. The Governor of the State, who previously had been CEO of Harvard Pilgrim Health Plan vetoed the bills.

Then, incredibly, both houses of the legislature over-rode the Governor’s veto. Truly an amazing situation – a testament to the power and determination of the patients but also the extent to which the epidemic of Lyme disease in Massachusetts had affected the families of legislators themselves, who perceived the injustice of the situation.

Many Lyme patients are confused. The contrast in what they experience and what the guidelines and textbooks say about the disease is huge. Can you tell us about the development of these guidelines and textbooks?

Confused patients? I would have to say being in this field, if one is honest, is difficult for the most astute physicians and scientists. Because it is very complex, people are very ill, we don’t have really adequate diagnostic tools to tell us clearly just what the situation is, what disease or diseases the patient is harboring. So, clinical judgment and experience is important and not easily earned. In my opinion we could be much further along than we are. However that will require a much bigger societal commitment of resources and scientific/medical talent.

Our former minister of Health, Mrs. Schippers said that guidelines do not serve as a legal framework, but how does this play out in practice?

It is nice to believe that Medical Practice Guidelines are just that, informal guidelines, however, in practice they are often used as weapons against practitioners, even if the guidelines are flawed. They can also stifle innovation. The Institute of Medicine singled out the 2006 IDSA Lyme disease guidelines as an example of a guidelines development process gone awry. Sadly, the CDC has continued to hold these up as ‘the best available science’. This holds sway in the US and across the globe to the great detriment of patients.

Vicki Logan’s case was very well known but how often do you have had similar cases and were they the rule or the exception?

Vicki Logan’s case was exceptional, but it has not been unique in my practice. I have had other similar cases, for example the case of Martin Eisenhardt. But Vicki’ case is one of the best documented cases in the world. Her tissues are being subjected to ongoing studies by first rate scientists and there will be additional lessons forthcoming from her case, which, I believe, honors her expressed wish to benefit others.

It sounds like there is a lot of distress and human rights are at stake, what are you doing at the moment to help?

Ultimately, these issues boil down to human rights abuses. What has been going on domestically and worldwide needs to be viewed in that light. Those who have engaged in systematic medical neglect of persons with chronic Lyme disease need to be ‘called out’ and ‘called to account’.

Dr. Kenneth Liegner, author of ‘In the Crucible of Chronic Lyme Disease’

Interviewer & author: Teike van Baden
Creative director: Huib Kraaijeveld

Coming next

This article will be followed by the third one based on Teike’s interview with dr. Robert Bransfield.

The English editions of his research articles are published on this website. You can sign up for the On Lyme Newsletter to receive updates on new publications. The Dutch articles will be publish on Teike’s own website.

If you want to support his work and our contribution to it, your donation is highly appreciated.

In this introductory blog post you can see why Teike started this research project and why it is meaningful to many ill people.

Can you also like, rate and share this article in order for more people to get this information? (Go to link at top of page)

For Vicki Logan’s story and more on Dr. Liegner:  https://madisonarealymesupportgroup.com/2017/03/09/remember-vicki-logan/

 

Category:

Activism, Lyme, Treatment

Natural is Not Always Better for Tick Borne Illness

https://globallymealliance.org/natural-isnt-always-better-getting-real-pharmaceutical-medication  by Jennifer Crystal

OUR SOCIETY’S FOCUS ON LIVING NATURALLY HAS CREATED A STIGMA AROUND THE “DANGERS” OF PHARMACEUTICAL MEDICATIONS. BUT FOR PATIENTS WITH COMPLEX ILLNESSES, LIKE LYME, IT’S NOT THAT SIMPLE.

One of the most challenging symptoms of neurological Lyme disease is insomnia. I’ve wrestled with it on and off throughout my two-decade battle with tick-borne illness. During my very worst point, I was literally awake for weeks. In extreme distress, I cried that I didn’t want to die but couldn’t live another second if I didn’t sleep. My doctor prescribed a short course of a heavy-duty sleep medication to knock me out.

“Don’t take it,” a friend cautioned. “It’s such strong medication. Your body has the natural resources to get the sleep it needs. Try some lavender oil or breathing exercises.”

I was way past the point of being helped by natural remedies, yet I shared my friend’s concern. We’d both fallen under the common belief that natural is better. In a society where people are focused more and more on living naturally, a stigma has grown around the “dangers” of pharmaceutical medicine. The message seems to be that “natural is good, medicine is bad.”

But for patients with complex illnesses, it’s not that simple.

Sure, there are benefits to living naturally. It’s healthy to put organic food into our bodies and environmentally-friendly fuel into our cars. Yoga, meditation, and mindfulness practices are great ways to naturally center ourselves. In Lyme treatment, natural supplements often complement our medication regimes.

But natural methods are not always better. For example, some people use the mineral colloidal silver to combat infection. Just because it is a mineral doesn’t mean it’s safe, though. High levels of colloidal silver can permanently turn the skin blue, or cause liver damage. I know one patient who wound up hospitalized in renal failure. Another friend took colloidal silver for bronchitis, which turned into a severe case of pneumonia that required stronger antibiotic treatment than she would have needed if she’d taken conventional medicine.

When you’re fighting a multi-system bacterial infection, pharmaceutical medication is life-saving. Antibiotics kill spirochetes, plain and simple. Some Lyme patients are eventually able to wean off antibiotics once their infections are cleared up, and continue with homeopathic or naturopathic treatments. No one wants to be on medications any longer than their body needs them.

To avoid them when your body does need them, however, is dangerous. A new study by psychiatrist Dr. Robert Bransfield, published in the journal Neuropsychiatric Disease and Treatment, found that there were over 1,200 suicides per year1 related to tick-borne illness. Had I not taken the heavy duty sleep aid to get through the worst of my insomnia, I might have become part of that disheartening statistic.

I didn’t stay on the medication forever. In fact, I only used it for a few days. Then my doctor slowly moved me to a less potent medication, which worked in tandem with my neurofeedback therapy, a non-invasive treatment that relied on my body’s own internal signals to help me heal. My sleep doctor wisely reminded me that Western medicine helps you get through crisis, while Eastern medicine gets at the root of a problem and deals with more long-term effects. Both, he said, are necessary for proper healing.

This can be a hard pill to swallow for people intent on only going the natural route. Take the case of Luitha K. Tamaya, a shamanic practitioner who shunned conventional medical treatments—until she suffered post-partum depression. Her traditional techniques were not enough to see her through this condition. Reluctantly, Tamaya turned to pharmaceutical medication, “a decision that has since had surprising and beautiful results.” The medication helped her heal and, moreover, led her to a new understanding of her more natural beliefs: “I now understand that shamanism can encompass and enrich all of our modern sciences, instead of standing apart from them.”

I have come to the same opinion. What’s needed is a balance of Western and Eastern medical philosophies. I have been on a non-narcotic sleep aid for years. I’ve never had to increase the dose, and it has not caused any adverse side effects. “That’s effective use of medication,” my doctor told me, when I worried I’d been on the medication too long. I continue to complement this conventional treatment with neurofeedback therapy. Similarly, I continue to battle spirochetes and other tick-borne infections with a mix of pharmaceutical, naturopathic and homeopathic remedies.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide what course of action is best for treating your one or more tick-borne illnesses. Your doctor should monitor your reaction to all treatments, whether they are pharmaceutical or naturopathic. As you decide together what’s best for you, just remember, natural is not always better.

1 Bransfield RC. Suicide and Lyme and Associated Diseases. Neuropsychiatric Diseases and Treatment. 2017 Jun; Volume 2017(13):1575—1587


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

**Comment**

I could not agree more.  I’ve posted articles about sick shaming Lyme/MSIDS patients, but there’s another type of shaming going on within Lyme Land – pharmaceutical shaming.  Patients can do this to one another and even medical professionals are guilty of it.  We recently changed doctors because our LLMD stated we were his longest treated patients at 3 years and made us feel guilty about it.  When symptoms steadily returned after being on a herbal regimen for a year, he refused to believe it was active infection and tried to blame it on “old age.”  Yeah right.  I know my body and have a Masters in Exercise Science.  I know a few things and I certainly know MY body.  My husband, an athlete and avid runner, also can tell what is active symptoms versus the aches and pains of living.

I’ve noticed another trend as well.  Many pure “naturalists,” don’t tell you that they often started with antibiotics that lessened the pathogen load considerably, but give all credit to herbs or some other natural treatment.  This wrongly gives the impression that they only used natural treatments.

I always tell patients to be willing to use everything AND the kitchen sink.  This stuff is beyond surreal.  It has side-lined the strongest, and left successful professionals in a heap.  It causes needless divorces, suicides, and family upheaval of the worst kind with the unbelievable kicker of not being believed and validated.

If I’ve learned anything on this nightmarish journey it’s to be open-minded.

Category:

Activism, Herbs, Lyme, Treatment

Stevia – Clinical Trial Underway

http://www.newhaven.edu/news/releases/2016-2017/professor-and-her-students-may-have-found-a-cure-for-lyme-disease.php#.WYxm4eOZNkI.linkedin

University of New Haven Professor and Her Students May Have Found a Cure for Lyme Disease

July 07, 2017

Could a common sweetener that’s already in the kitchen cupboards in many American homes — stevia — prove to be an effective treatment for a disease as debilitating and persistent as Lyme disease?

It’s too early to say that for sure, but research by Eva Sapi, a University of New Haven professor of cellular and molecular biology, and the students in her Lyme Disease Research Group looks promising.

In a paper published in the European Journal of Microbiology & Immunology, Eva Sapi and her students found that the most antibiotic resistant form of Borrelia burgdorferi, the bacteria that causes Lyme disease — called biofilm — actually increased in mass with individual antibiotics.

But liquid, whole-leaf stevia extract — not the powdered varieties that people most commonly use — reduced the biofilm mass by about 40 percent, they found.

UNH professor could have cure for Lyme disease

“Is it the one?” Sapi asked. “I don’t know.” But in confirmation test after confirmation test, “that is the one that jumped out.”

A small clinical trial based out of New York got underway just a few months ago, and researchers there are using stevia along with antibiotics to try and treat Lyme disease, while others are taking the extract themselves.

“I’ve got emails from people saying they’re getting better, but again, we need to have double-blind clinical trials before we say ‘yes’. Everybody is holding their breath to see if it helps, and let’s hope for it. That would be wonderful.” 
– Professor Eva Sapi, Ph.D

WFSB 3 CT News (Go to link at top of page for News video)

For more on Stevia:  https://madisonarealymesupportgroup.com/2015/11/19/stevia-and-bb/

Study excerpt:

In this study, we provided evidence that Stevia A, as an individual agent, was capable of eliminating the spirochetes and the persisters of Borrelia similar to the reported three-drug combination treatment. Our data also showed that the antibiotics in combination on the persist- ers of Borrelia was indeed consistent with the previous study [30]; this result further confirms the effectiveness of Stevia A.

**Please note Sapi tried numerous forms of Stevia and only some were effective.  The exact Stevia product is not mentioned.  Also, please remember all of this was done in vitro (test tube).  How that plays out in vivo (the human body) has yet to be determined.

Also:

In a study using a sugar alcohol, it was reported that xylitol acts as an antiplaque agent by disrupting the formation of biofilms in the oral cavity [54]. In another study, they showed that xylitol affects the production of adhesive polysaccharides of Streptococcus mutans [55].

It was previously shown that sugars prime the uptake of antibiotics in Staphylococcus aureus and Escherichia coli [56]. Based on these previous findings, we hypothesize that Stevia could act as a sugar derivative, which might prime the uptake of the phytochemicals responsible for the antimicrobial effect and, thereby, disrupt the biofilm structure.

I know of certain LLMD’s who use Stevia or Xylitol in their Lyme treatment regimens.  As always, work with your medical professional if you want to try it as some report significant herxes.

In one case, they take 2 tsp of Xylitol once daily along with 500 mg of Lactoferrin.  This regimen tells patients not to use any Stevia/Xylitol related products for the duration of treatment.  Dr. Mary Ross advises starting with 1 drop of Nutramedix brand liquid Stevia twice a day and increasing by 1 drop per dose until at 5 drops twice a day.  http://www.treatlyme.net/treat-lyme-book/stevia-lyme-disease/  Others have stated to build up to 7 drops of Stevia in a glass of water on an empty stomach daily.

Dr. Horowitz has a blog on his Facebook page where patients compare notes on their use of Stevia:  https://m.facebook.com/drrichardhorowitz/posts/926372540784878

 

 

Category:

Herbs, Lyme, research, Treatment

One Dose of Antibiotic for Lyme Disease in Rhode Island

**Please view my comment at end of article**

http://www.providencejournal.com/news/20170729/fighting-lyme-disease-in-ri-dose-of-antibiotic-without-prescription by Lynn Arditi  July 29, 2017

http://wpri.com/2017/08/01/expert-pharmacy-helps-combat-lyme-disease-doctors-not-required/  Channel 12 WPRI Eyewitness News video

SOUTH KINGSTOWN — A family-owned pharmacy in this seaside town recently began dispensing antibiotics to people without prescriptions to reduce the risk of developing Lyme disease.

Green Line Apothecary announced in late June that it is offering the single 200-mg prophylactic dose of doxycycline to adults within 72 hours of a deer tick bite if they meet the U.S. Centers for Disease Control and Prevention’s criteria for infection risk.

Proponents of the program — reportedly the first of its kind in the country — say it serves an important public health need by expanding timely access to treatment that could prevent more people from developing the potentially debilitating disease. And they hope it will become a national model.

But experts caution that expanding access to antibiotics to prevent Lyme disease may do more harm than good. Most people who will get the preventative treatment, they say, would likely never have developed Lyme disease. For those who are infected, some doctors worry a prophylactic dose may not be enough to prevent the patient from getting sick. And misuse or overuse of antibiotics can contribute to another major public health problem: antibiotic resistance.

The pharmacy program follows passage of legislation by the Rhode Island General Assembly in 2016 that expands pharmacists’ role to include initiation of drug therapies under so-called collaborative practice agreements.

The state health department’s approval of the Green Line program comes amid growing public concern over Lyme disease, which each year is diagnosed in roughly 30,000 people in the country, 95 percent of them in 14 states including Rhode Island, according to the U.S. Centers for Disease Control and Prevention.

In 2015, Rhode Island reported 904 diagnosed cases of Lyme disease, the 11th-highest rate in the country, according to the CDC.

“As a state we are always looking at ways to be proactive in reducing the incidence of Lyme disease,″ said Dr. Nicole Alexander-Scott, the state health director who, on June 12, signed a two-year collaborative practice agreement with Green Line. The pharmacy program, she said, is “one of those approaches.”

Washington County is Rhode Island’s ground zero for Lyme disease, with nearly twice the statewide rate, state health data show.

“Everybody knows someone who has been impacted by Lyme,” said Anita N. Jacobson, a pharmacist and clinical associate professor at the University of Rhode Island College of Pharmacy.

Christina Procaccianti, a pharmacist and Green Line’s owner, is one of those people. The vintage-style pharmacy and soda fountain opened in 2016 on Main Street in Wakefield.

Procaccianti, 34, contracted Lyme disease in 2011, while she was pregnant. After an eight-week course of antibiotics, she said, she made a full recovery and delivered a healthy baby girl. “I know how awful Lyme is,” she said.

“If we can prevent it for anybody,” she said, the effort will be a success.

The program kicked off June 22 with a poster display, informational fliers and offers of free “Lime Rickey’s for Lyme Disease.”

Peter Schunke was among the first to seek treatment. That morning, his wife, Elizabeth, had plucked a “pin-top size” tick from his back left shoulder. Schunke, 72, had contracted Lyme disease years ago, so he and his wife headed to the pharmacy.

They hadn’t saved the tick. Procaccianti, the pharmacist and owner, showed Peter Schunke a chart with different types and sizes of ticks for identification. Then she asked him a series of questions. He signed consent forms, handed her his insurance card and walked out with two 100-mg doxycycline pills.

Later, Elizabeth and Peter Schunke said the tick looked like the smallest of the four pictured on a poster displayed at the pharmacy.

“I’m pretty sure it was not engorged,” Peter said, “because it was so tiny.”

The smallest on the poster — the tick larvae — would not meet the CDC guidelines for treatment.

If he had pointed to the tick larvae “we wouldn’t have given [doxycycline] to him,″ Procaccianti, the pharmacist said. “He pointed to a tick that we positively identify as fitting the criteria. … Every single checkpoint on his questionnaire is checked off.”

She added: “The problem with these deer ticks is that they’re so micro tiny that an engorged tick may not even look engorged.”

Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected deer ticks, also known as blacklegged ticks.

Early signs and symptoms may include fever, headache, fatigue and, in some cases, a characteristic red rash, often shaped like a ring, called erythema migrans. But about 20 percent to 30 percent of those infected with Lyme disease never develop the telltale rash. Later symptoms can include severe headaches, neck stiffness, arthritis, joint pain, facial palsy and problems with short-term memory, among others.

Though the Infectious Disease Society of America “does not generally recommend” antibiotics to prevent Lyme disease even after a deer tick bite, in highly endemic areas, such as Rhode Island, a 200-mg dose of doxycycline “may be offered to adult patients” who meet their criteria, the CDC website states. (The CDC has separate criteria and dosages for children 8 years or older.)

“We don’t recommend it but we offer it,″ said Dr. Timothy P. Flanigan, medical director of The Lifespan Lyme Disease Center at Newport Hospital.

The treatment’s effectiveness, he said, is based primarily on a single study. “It’s not wonderful evidence, but it is partial evidence,” he said. “Patients deserve to know the pros and cons and we let patients know that, and we let them make a decision.”

If someone gets bitten by a deer tick on a Friday afternoon or a weekend, Flanigan said, they may not be able to get an appointment to see their doctor within the critical 72-hour window. And the program could reduce costly emergency department visits.

“I think this is a good use of a pharmacy-based clinic,” Flanigan said.

The largest study of doxycycline as a prophylactic treatment to prevent Lyme disease was published in 2001 in The New England Journal of Medicine. Led by Dr. Robert B. Nadelman, an infectious disease specialist, researchers found that among the subjects treated with doxycycline within 72 hours of a deer tick bite, only one developed the erythema migrans rash at the site of the deer tick bite compared with eight who received a placebo.

The Nadelman study concluded that a single 200-mg dose of doxycycline — twice the average daily dose to prevent malaria — given within 72 hours after a deer tick bite can prevent the development of Lyme disease.

The prophylactic doxycycline treatment, the study concluded, could reduce the risk of developing Lyme disease by 87 percent.

To be eligible for the treatment, however, the CDC requires the tick be positively identified as a deer tick and have been attached for 36 hours, “based on the degree of engorgement.”

If every person treated meets all of the CDC criteria, Jacobson said, statistically they would only need to treat 11 people in order to prevent one case of Lyme disease.

But that’s a big “if.” Can patients be expected to properly identify the offending insect from a tick-photo lineup? And how would they know if it had been attached for 36 hours?

Outside of a research study, the conditions to determine whether all of those seeking the prophylactic treatment qualify are “almost non-existent,” said Dr. Rade B. Vukmir, a spokesman for The American College of Emergency Physicians.

Ticks which can transmit Lyme disease are about the size of a poppy seed. They’re so small that “people almost never see the tick,″ Vukmir said. “And the ticks they do see are typically not deer ticks.″

Vukmir practices medicine in Pennsylvania, which, in 2015, the CDC reports had the highest-rate of Lyme disease cases in the country.

Even in areas that are endemic for Lyme disease, he said, the likelihood of a tick bite transmitting the infection is so low — between 3 percent and 5 percent — that about 50 people would need to be treated with the prophylactic antibiotic to prevent one person from developing the disease. “You’re treating a lot of people without any benefit.”

And overuse of antibiotics can contribute to antibiotic resistance. At least 2 million people in the U.S. each year become infected with bacteria that are resistant to antibiotics, and at least 23,000 people die as a direct result of those infections, according to the CDC.

“If you’re that one person who benefited, you’d say absolutely that’s important to me,″ Vukmir said. ”[But] from the public health level there would really not be any way to justify that treatment.”

Laboratory tests have demonstrated that the antibiotics doxycycline and amoxicillin also “can induce a persistent form of the bacteria that are more tolerant to treatment,″ Dr. Ying Zhang, a professor at the Johns Hopkins Bloomberg School of Public Health.

It’s also not known whether a 200-mg dose of doxycycline is always enough to prevent Lyme disease, Zhang said. So someone may still become infected and get sick, he said, but the antibiotic could cause their blood to test negative for Lyme, making diagnosis more difficult.

Concerns about the pharmacy-based program recently prompted Rhode Island’s health director to take another look at the guidelines.

Last week, Alexander-Scott said she was considering modifying the collaborative practice agreement to require people seeking treatment at Green Line to bring in the tick or a photo of it to improve proper identification. Over the next two years, she said, state health officials will “collect and analyze data to see if this is a good way to address our challenges and diseases in our state.”

URI’s Jacobson, a past-president of the Rhode Island Pharmacists Association who led the effort to permit pharmacists to initiate drug treatments, said Green Line’s pharmacists are following the CDC protocol “to the letter.”

“If anything, I think we are improving antibiotic usage,” Jacobson said, “because the other way is you just call the doctor and say, ‘I got bitten by a tick.’ If it’s a Friday night and it’s an on-call doctor, what do they do?”

The doctor, she said, might just call in a prescription.

As of Friday, Green Line had treated 31 people and declined to treat another 27, most because the 72-hour window had already past, Procaccianti said. The pharmacy also last week began requiring that people bring in the tick or a photo of it to be eligible for treatment, she said.

“We don’t want to unnecessarily give anybody an antibiotic,” she said, “so we’re really being very careful making sure everybody meets the criteria.”

Dr. Fredric J. Silverblatt, an infectious disease specialist and head of South County Hospital’s Lyme clinic, is the prescribing physician for the Green Line program.

Silverblatt, who lives in a wooded area, said he has contracted Lyme disease “three, four times.” The last time, he developed encephalitis, a potentially life-threatening inflammation of the brain, and was hospitalized for several weeks. He now keeps a bottle of doxycycline in his medicine cabinet.

“If I pull a tick off,” he said, “I will take 200 milligrams.”

He said he offers the same prophylactic treatment to some of his patients.

Clinical studies published to date show “no evidence” that anyone treated prophylactically with doxycycline has developed Lyme disease six months to three years after treatment, Silverblatt said, and “that’s comforting.”

However, he said, overuse of antibiotics remains “a valid concern.”

“The chance that a person who has been bitten by a tick will actually get Lyme disease is between 3 percent and 5 percent,″ he said. “So the question can be raised: Is this really worthwhile?”

That depends, he reasoned, if you’re one of the “unlucky 5 percent.”

Prevention tips:

— Wear long pants and tuck pant legs into socks

— Spray clothing, shoes and camping gear with the insecticide permethrin, which kills ticks on contact.

— Check your entire body thoroughly for ticks, especially the back of your knees, waistband, armpits or any other constricted places.

— Use sticky duct tape to remove tick larvae from you or your dog before they bite.

— If you find an attached tick, remove it immediately. Once attached, ticks do not wash off in the shower.

How to remove an attached tick:

— Using fine-tipped tweezers grasp the tick as close to the skin’s surface as possible.

— Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin.

— Clean bite area, hands and tweezers with rubbing alcohol, an iodine scrub, or soap and water.

— To save the tick for identification, place it in a sealed bag or wrap it in scotch tape.

— Take a photo of the tick and send it online to TickSpotters.

— Testing of individual ticks generally is not useful, the CDC states, because even if the test shows that the tick contained disease-causing organisms, that does not necessarily mean that you have been infected.

— If you develop symptoms, seek medical care immediately.

Source: CDC; tickencounter.org

 **Comment**
This article reminds me of Bull Sharks which can’t see worth a crap so they hunt in shallow murky waters inadvertently biting people they mistakenly think are food.
1) As Dr. Zhang apty stated, there is no proof whatsoever that 1 pill of doxy cures Lyme:  https://madisonarealymesupportgroup.com/2017/03/24/one-pill-of-doxy-only-reduces-prevalence-of-rash-not-lyme-disease/
2)  Zhang’s comment about doxy throwing borrelia into a more persistent form (round body forms) is something the CDC/NIH/IDSA isn’t acknowledging at all.  https://www.ncbi.nlm.nih.gov/pubmed/21753890#  I guess since a researcher outside The Cabal discovered this – it is tossed out like yesterday’s garbage.
The bull sharks continue to swim in murky waters – blind as bats.
3) Once a person takes antibiotics, LD may not be picked up on future testing.  This will definitely present problems.
4)  The EM rash is a poor indicator of Lyme Disease.  Just how poor?
Rashes-larger-blog
5)  The “two magic pills approach” gives patients and doctors a false sense of security.
6)  The whole “tick of a certain size,” and “72 hours” is more murkiness.  WHY?  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/  People have jumped right to 3rd stage Lyme (is in the central nervous system) within hours.  “Ticks of a certain size” omits the fact that ticks often partially feed, drop off, and then have pathogens already in their salivary glands allowing a much quicker transmission time – regardless of size.
The Bull sharks continue to want to simplify this.
7)  There is NOTHING simple about Lyme Disease.  The borrelia of Lyme is one of the most complex organisms on the planet and they continue to treat it similarly to the common cold, even though it persists, morphs, and hides.  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/
8)  Due to borrelia’s pleomorphism and ability to hide stealthily in the body undetected, one must consider that if those 1-2 pills don’t do the trick, it very well might set the patient up for dementia/Alzheimer’s later on:  https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/
https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/  Doxy will NOT kill nematodes (worms).  Ticks often have multiple parasites within them – passing them onto people.
**Refuse to swim in murky waters with bull sharks and educate those around you so they can see clearly**

 

Category:

Lyme, Ticks, Toxoplasmosis, Treatment