Archive for the ‘Treatment’ Category

Interstitial Cystitis and Lyme Disease

https://rawlsmd.com/health-articles/link-between-interstitial-cystitis-and-lyme-disease

by Dr. Bill Rawls
Posted 8/25/17

Things often come around.

Early in my career practicing Ob/Gyn, I became aware of a subset of patients who suffered from a condition called interstitial cystitis (IC), sometimes referred to as painful bladder syndrome.

People with interstitial cystitis feel like they have a bladder infection that never goes away. It doesn’t respond to antibiotics, and urine cultures are typically negative. Because these patients are often treated repeatedly with antibiotics, however, they frequently end up having chronic urinary tract infections with antibiotic-resistant bacteria induced by taking antibiotics. The condition occurs more often in women than men at a 5:1 ratio.

Interstitial cystitis is considered idiopathic — cause unknown. It is notoriously difficult to treat. I developed a special compassion for these people because no other physicians wanted to see them. For years, I searched for solutions, but my efforts were focused primarily on relieving symptoms — gains were minimal and short-lasting.

Symptoms of Interstitial Cystitis

  • Urinary frequency & urgency
  • Bladder pain with full bladder
  • Pain in perineum & urethra
  • Chronic pelvic pain
  • Vulvar/vaginal pain (female)
  • Pain in testicles (male)
  • Painful sex

The Lyme Connection

Interestingly, with my professional interests now focused on chronic Lyme disease, I’m starting to hear from chronic Lyme patients who suffer from bladder pain and symptoms consistent with IC. I’m also hearing from men with chronic Lyme who have bladder symptoms and chronic prostatitis (chronic infection of the prostate gland).

And, interestingly, remembering back to patients from the past, sufferers of IC frequently had chronic pain in other areas of the body. Many of them also had fatigue and symptoms common to fibromyalgia and chronic Lyme disease.

This makes me believe there has to be a microbial connection. Borrelia, the microbe commonly associated with Lyme disease, could be a culprit. However, I would lay odds on mycoplasma and a closely related bacterium called ureaplasma. About 75% of chronic Lyme disease sufferers have been found to harbor at least one species of mycoplasma.

It fits. Mycoplasma and ureaplasma are the smallest of all bacteria. They are obligate intracellular microbes — which means they must live inside cells of a host to survive. They typically infect linings of the body — linings of lungs, intestines, joints, and the urinary tract.

Different species of mycoplasma and ureaplasma prefer certain areas of the body, but any species of these microbes can be found in different places the body. The most common species found in the urinary and reproductive tract are Ureaplasma urealyticum and Mycoplasma hominis. These microbes typically spread sexually, but they can be acquired by other routes. Mycoplasma pneumoniae, a frequent cause of respiratory infections, can also be found in the urinary tract.

Mycoplasma and ureaplasma are notoriously difficult to culture. Twenty-five years ago, when I first started practicing medicine, routine testing for mycoplasma and ureaplasma was not available. That’s starting to change — DNA testing has become more reliable, and providers are testing for these microbes more routinely.

And they are finding them — not just in symptomatic patients, but also commonly in people with no symptoms.

That makes things complicated — mycoplasma and ureaplasma are commonly found in the urinary tracts of people who don’t have symptoms. It turns out that it’s actually a very common microbe. Some experts have even defined it as a normal flora. This is why many experts discount the connection between mycoplasma/ureaplasma and bladder problems.

It presents the same kind of conundrum found in chronic Lyme disease — why do some people with these microbes develop symptoms and others do not?

What I didn’t know 25 years ago that I learned from understanding chronic Lyme disease is that the immune system is the key. If people have robust immune function, they can harbor these microbes and not have symptoms. People become chronically ill only when a perfect storm of factors comes together to disrupt immune function, which allows the microbes to flourish.

Therefore the solution must go beyond killing or suppressing microbes — you must restore immune system functions to optimal levels to overcome this illness.

Overcoming Mycoplasma and Ureaplasma

Mycoplasma and ureaplasma respond poorly to synthetic antibiotics for the same reason that other microbes associated with chronic Lyme disease respond poorly to antibiotics — they live inside cells, grow very slowly, and occur in low concentrations in tissues. In addition, mycoplasma and ureaplasma do not have a typical cell wall and other characteristics common to bacteria.

To control them, you must suppress them for a very long time and boost immune function at the same time. If you try to do it with synthetic antibiotics, normal flora are disrupted long before the targeted microbes are eradicated.

Herbs provide a more practical solution. Herbs suppress these types of microbes, but do not disrupt normal flora, so they can be used for extended periods of time (months to years) without concern. Herbs also reduce inflammation and boost immune functions — especially natural killer cells important for eliminating cells infected with microbes.

My favorite herb for mycoplasma and ureaplasma in the urinary tract is anamu (Physalis angulata) because it is concentrated in the intestines and urinary tract. The dose I recommend is 1200 mg (2 – 600 mg capsules) twice daily. It is well tolerated with only noticeable side effect being a mild odor to urine and stool. The herb comes from South America, but is readily available from many manufacturers online.

Mullaca (Physalis angulata), another South American herb, is also good for mycoplasma species. It can be taken as a complement to amamu. It can be found online as a loose powder (add to smoothies or make your own capsules) or tincture, as well.

Stephen Buhner, in his book defining therapy for mycoplasma, recommends Chinese skullcap, Isatis, Houttuynia, Sida acuta, and Cordyceps for a primary herbal protocol. I consider Cordyceps and Chinese skullcap to be part of a core protocol for chronic Lyme in general.

Individuals are reporting symptomatic relief of IC symptoms with use of essential oils rubbed into the pubic area several times a day. I have been recommending a formula of tea tree oil and frankincense oil mixed 1:4 in a carrier oil, such as jojoba or grapeseed oil. Recently, I’ve also been recommending adding cannabidiol oil (CBD) from hemp (get a product with 1500 mg CBD per fluid oz.). So far, people are reporting positive benefits.

The recovery protocol for overcoming mycoplasma and ureaplasma in the urinary tract mirrors recovery from chronic Lyme disease or any other condition associated with chronic immune dysfunction. Focusing on a specific microbe alone is not enough; immune system function must be restored. Primary antimicrobial herbs and immune modulating herbs, complemented by cultivation of a healing environment within the body, are your best allies in the fight against interstitial cystitis and Lyme disease.

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease and recovery in Dr. Rawls’ new best selling book, Unlocking Lyme. You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.

_______________________

**Comment**

Wonderful article.  Thank you Dr. Rawls for explaining a particularly troubling issue that Lyme/MSIDS patients can suffer from.

More on Mycoplasma:

“….90% of evaluated ALS patients had Mycoplasma. 100% of ALS patients with Gulf War Syndrome had Mycoplasma and nearly all of those were specifically the weaponized M. fermentans incognitus.
*One of the hallmark symptoms of Mycoplasma is fatigue*
And the bad news for us is that Nicholson’s experience has found Mycoplasma to be the number one Lyme coinfection, and similar to other coinfections can be supposedly cleared for years only to reappear when conditions are right.”

For more on IC:  http://ndnr.com/womens-health/interstitial-cystitis-the-role-of-myofascial-therapy/

The evidence from the study reveals that MTP (Myofascial Therapy) is indeed beneficial for improving symptoms of IC, suggesting that physical therapy is an important modality to consider in a treatment plan for a patient suffering from the disease. It adds credibility to the idea that there are specific pelvic somatic abnormalities involved with IC, as the study showed the treatment effect was not merely due to general therapeutic touch.

Category:

Herbs, Interstitial Cystitis, Lyme, Mycoplasma, Treatment

Euthanasia for Lyme Covered Not Antibiotics

Free euthanasia as Lyme treatment

Published on Mar 19, 2017
Teike is a 29 years young Dutchman. He is well-educated and had a career in the music industry, as a sound engineer, working with saxophonist Candy Dulfer and many international hiphop stars.

Five years ago he became ill after a tick bite, followed by an EM ring. He was tested for Lyme in seven different ways.

Elisa and Western Blot were negative. Different cellular tests were positive on both Lyme and Bartonella.

Based on these tests and a clinical diagnosis, a doctor in a Dutch hospital diagnosed Teike with persistent Lyme. In this short movie he tells you how his health insurance deals with that, with English subtitles.

His case is included into the report sent to the WHO, regarding the needed update of the ICD codes.

Read more about that here, in English: https://huib.me/en/blog/item/78-the-d… of it in the Nederlands: https://huib.me/nl/blog/item/78-het-v…

Category:

Activism, Lyme, Treatment

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.

____________________________________________________________________________________________

 

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