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#21 SkunkyAroma

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Posted 11 April 2016 - 03:28 PM

Cannabidiol paste potentially a cure for Lyme disease

 

17599hopeDr.MurakamiCover.jpg
A revolutionary new paste called cannabidiol looks promising in the treatment of several illnesses including Lyme disease. Dr. Ernie Murakami presents his findings to Hope residents about the potential benefits of cannabidiol on a plethora of diseases including diabetes.
— image credit: Erin Knutson

Local resident and former Hope practitioner Dr. Ernie Murakami is on the verge of a medical breakthrough that could revolutionize the face of medicine and upset a potentially grossly misdiagnosed population according to his extensive life’s research on Lyme disease.

“The medical profession is being criminally negligent,” said Murakami of misdiagnosis’ being made in relation to the onset of Lyme disease.

An 84 year-old activist who now teaches at a naturopathic facility and is the founder of the Dr. E. Murakami Centre for Lyme Research was once a prisoner in the Japanese-Canadian Internment camps during World War II.

He is no stranger to controversy.

Mild-mannered in his approach — the patriarch, who was disenfranchised by the B.C. medical community spoke passionately about his work during a recent presentation at the Fraser Canyon Hospital to a group about the effects of a relatively new paste on the market known as cannabidiol.

The derivative of marijuana, which is also a vegetable, boasts healing properties equal to traditional methods (antibiotics,) without negative side effects according to Murakami’s early findings.

His preliminary research suggests that cannabidiol, which can be legally purchased at the Green Cross Society of B.C. in Vancouver could potentially be used to treat a variety of illnesses including diabetes, cancer, fibromylagia, chronic pain and multiple sclerosis.

Having treated a vast number of Lyme disease patients and lecturing for over 40 years in the medical community as a specialist in bacteriology and immunology, Dr. Murakami sought treatment for chronic sufferers who experienced symptoms of pain, arthritis, fatigue, depression (with suicide ideation) mental fog and organ failure.

An undiagnosed epidemic of lyme disease in North America is presenting itself in the form of other illnesses and is correlative to the onset of Lyme disease, based on results of Murakami’s work.

Current environmental conditions are providing a healthy breeding ground for the ticks, who do not traditionally survive in cold temperatures. An influx of warm weather during winter months is allowing the pests to flourish and go undetected by their hosts.

This has been denied by the proper authourities as stated by Murakami and may also be linked to dwindling moose populations.

“I once had a patient who suffered from severe depression — the medical community said she was a mental case, but I insisted on doing the tests and we found that her symptoms were the result of Lyme disease (which is contracted through the implantation of a tick),” he said. “The leading cause of death in Lyme disease is suicide — the depression is that bad.”

Conservative in his approach toward marijuana, Murakami was dead against the use of pot smoking, but became interested in the benefits of cannabidiol paste, as it didn’t possess the psychotic effects traditionally induced by marijuana usage.

After discovering he had a brain tumor Murakami used the paste to treat it, after researching a case where cannabidiol dissolved a Glioma tumor. This resulted in its disappearance.

“I thought this was an impossibility, until I saw the MRI reports showing the absolute resolution of the tumor in four months,” he said.

Other anecdotal cases of cannabidiol treating chronic infections, which have been resistant to standard antibiotics have been cited in his preliminary research; suggesting, the possibility that cannabidiol has an antibiotic effect.

Research, which is in its initial stages and involves testing cannabidiol on live spirochetes (infectious Lyme bacteria,) has stood up to preliminary inquiry and provided solid evidence for the necessity to continue with further testing.

“I made them better and I was condemned for it,” said Murakami of the reception of his work by the medical profession and by UBC, where he was a teacher for five years.

 

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#22 SkunkyAroma

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Posted 01 May 2016 - 05:26 PM

Here is a link called "Unusual Musculoskeletal Manifestations of Lyme Disease"  it shows how muscles and bones can be displaced and modified by the Lyme bacteria over time.  The common complaint of rib pain with lyme disease has been known to also cause rib dislocation.  Some say the spirochette Lyme bacteria do not like excess oxygen, so it seeks to control breathing through control of the ribs. 

 

  https://www.research...of_Lyme_disease



#23 SkunkyAroma

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Posted 01 May 2016 - 05:51 PM

Most common symptoms reported by 1000 Patients with persistent borellia infection (Lyme disease): (% of Patients)

 

Fatigue: 96 %

Brain Fog: 87 %

Joint Pain: 78 %

Loss of Balance: 60 %

Headaches: 57 %

Neck Pain: 56 %

Muscle Twitching: 55 %

Insomnia: 52 %

Muscle Weakness: 51 %

Vision Floaters: 48 %

Mood Swings: 47 %

All Over Body Pain: 43 %

Noise Sensitivity: 42 %

Heart Palpitations: 41 %

Light sensitivity: 40 %

Night Sweats: 36 %

Ringing in Ears: 36 %

Deep Bone Pain: 35 %

Low Body Temperature: 35 %

Numbness Hands and Feet: 33 %

Air Hunger: 30 %

Migraines: 30 %

Rib Cage Pain: 30 %

Sensitivity to Smell: 26 %

 

If you have 5 or more of the listed symptoms, there is a very good chance you have Lyme Disease.

 

Remember testing for Lyme disease is only 40 percent accurate and you should be diagnosed clinically based upon your symptoms.



#24 SkunkyAroma

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Posted 14 May 2016 - 02:38 AM

Testimonial:

“This is a serious matter, resulting in so much pain that you may end up in a wheel chair or even bed stricken for days at a time. I t takes away the enjoyable aspects of life and can make you’re everyday routine miserable.  We all know suffering from intense pain is no laughing matter, and being nauseous constantly is a burden within it’s self.  This is what this disease places in you’re body, sucking precious time from your life, you’re mind as well.”

“Chronic Lyme Disease with people suffering constantly, not in spurts. Many people with Lyme disease may not think cannabis could be one of the more affective long-term medicines to help alleviate symptoms. Cannabis is a safer, more soothing medication that can eliminate pain in all forms.  Medically, cannabis can be used for many reasons.  It fights the aches in your joints and pain throughout your whole body.  The more potent the strain brings on the more potent medication.  This could be the answer to questions about cannabis being an alternative medicine with the people suffering from “Lyme Disease” who are looking for other, more natural methods of healing.  Cannabis can provide the energy needed to make it through the rough days when your symptoms are high.  During the evening it can make lying down and falling asleep a delightful occasion, instead of a frustrating restless one.  After a great night sleep, you could wake up feeling refreshed instead of sore and tired.  In the morning cannabis is an incredible way to help loosen your joints and stiffness from previous nights tossing and turning.  The unfortunate early sunrises when you woke up sick and tired could truly be a thing of the past.  Ingesting cannabis will make your appetite stronger, bringing some much needed nutrition.  Walking instead of limping, around the house brings back pleasant mornings.  Also for the non-smokers you could have a tasty, potent and original edible medication of your choice. Medical cannabis oil not only relieves the symptoms but can actually cure you of this terrible disease with prolonged use, ingesting 60 grams of decarboxylated cannabis oil as quickly as you are able is the natural path to being normal, happy and healthy again, I promise you”

 

Also, for folks with long-term Lyme and antibiotic use, you are now most likely dealing with a systemic candida infection, you're in luck because a long term cannabis oil program will destroy candida as well.  You are on your way to healing, plus looking and feeling 20 years younger.  Cannabis oil is a true miracle for health and well being.



#25 SkunkyAroma

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Posted 27 June 2016 - 06:44 PM

   Fatal tick bite  ​

 

by Jeff Baillon

 

  There's yet another reason to protect yourself from tick bites this summer. Health officials are warning people about a disease that can stop your heart.

 

Steve Stolz noticed something was wrong with his heart while he was walking up a hill. "It should be fine and something doesn't feel right," he remembered thinking.

 

His heart was beating at a much slower rate than normal.  "That was enough of a warning to say we need to go to the emergency room," Stolz added. 

 

Something was messing with the electrical system of his heart and it was something he came across out in the woods. 

 

The same organism attacked the heart of another Minnesota man last year.

 

"Nothing quite added up and so while they were trying to work out what was going on with him, unfortunately he ended up passing away," said Elizabeth Schiffman from the MN Department of Health.

 

That was Minnesota's first documented case of sudden cardiac death linked to the bite of a Lyme-infected tick.

The middle aged man from the Twin Cities had developed a rare condition known as "Lyme carditis".

 ​



#26 SkunkyAroma

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Posted 13 July 2016 - 03:11 PM

Please read this article to learn more of the scandal behind Lyme disease: http://owndoc.com/ly...-of-a-cover-up/



#27 SkunkyAroma

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Posted 31 July 2016 - 10:39 PM

  Lyme Encephalopathy: Impact on Quality of Life

B.L. Goldklang (1), S.S. Festa (1), and J.S. Hason (1,2).

Lyme Disease Coalition of New York and Connecticut, Katonah, NY, USA (1); Arthritis Foundation, Long Island, NY, USA (2).

Lyme encephalopathy has been defined in the medical literature as a "mild confusional state" characterized by subtle disturbances in memory, mood, and sleep.1'3 To patients with this syndrome, however, this mild confusional state has a disabling impact on all aspects of daily life: from the ability to maintain full-time employment, relationships, and independence, to the simple capacity for task performance, household maintenance, and the rudimentary abilities to plan, schedule, and organize. For many patients, the simplest activities become difficult, time consuming, or completely impossible to perform.` Other patients are unable to work or attend school for months to years, leading severely curtailed lifestyles and a significantly diminished quality of life.

Although people with Lyme encephalopathy may appear physically well, many are seriously disabled.' The extent of disability is linked to a range of cognitive, sensory, and neuropsychiatric symptoms and syndromes, including but not limited to, short-term memory loss, language processing difficulties, attention deficits, ,extreme sensitivity to sound, light, and movement, insomnia, lability, mood disorder, major depression, anxiety and panic attacks, obsessive compulsive disorder, and extreme fatigue.4,842 Irritability escalating to violence has also been observed as a manifestation of Lyme encephalopathy.4'8'13 To put a human face on this complex and poorly understood aspect of Lyme disease, we interviewed adult and pediatric patients with Lyme encephalopathy, particularly focusing on its impact on the patient's quality of life (QOL). For adults, we looked at QOL in terms of vocational functioning (ability to work at or maintain a job), social functioning (ability to sustain relationships, marriages, friendships), mental and physical independence (ability to pursue daily activities ranging from money management to transportation, or shopping without help of others), psychosocial functioning (ability to cope with behavioral and emotional limitations and deficits caused by dysfunctions in mood and personality, severe depression, sleep disturbance, and cognitive impairment), and recreational functioning (ability to maintain hobbies, interests).

For children with Lyme encephalopathy, we looked at QOL in age-appropriate areas of educational progress (ability to attend and complete school) and social functioning (ability to make and maintain friendships). Psychosocial and recreational functioning were also considered, as these areas likewise reflect critical aspects of childhood development. Not surprisingly, children with encephalopathy are hit hardest by its often dramatic (not subtle) mood and psychiatric changes--changes they neither understand nor are frequently able to express or articulate, as many may be too young and have nothing in their experience by which to compare, gauge, or comprehend such changes.14-16

While initial unstructured interviews of encephalopathic patients reveal complaints of memory loss and inability to focus or concentrate, mood swings, fatigue and sleep disturbance, the tremendous impact of these symptoms on daily functioning is not immediately clear. The complaints of patients with encephalopathy may seem "vague" in part because of the patients' difficulties in recalling specific examples and organizing their histories or interviews. In patients presenting with memory and sleep problems, for example, symptoms which may appear vague, are often of profound duration and severity. While everyone from time to time may forget a word or a name, or lose their car keys, patients with Lyme encephalopathy exhibit these types of problems repetitively and with marked frequency many times in a single day.

It should be noted that a complaint remains vague only as long as the clinician allows it to remain vague." And "... what often appears 'vague' to the doctor can be devastating to the patient. "18 Where signs of encephalopathy are persistent and disabling, neurologic, psychiatric, and neuropsychiatric evaluations are essential and invaluable adjunctive aids for the clinician.19-24

ADULTS WITH LYME ENCEPHALOPATHY

Adults with Lyme encephalopathy commonly present with memory and attention problems, language difficulties (including dyslexia, word-finding problems, word misuse and mispronunciation), impaired calculation and reasoning (with number reversal and inability to perform simple math problems, including inability to make change), impaired judgment and problem solving, major to severe depression (with suicidal ideation and attempts), and sleep disturbance (ranging from hypersomnolence to insomnia). Patients' symptom descriptions are dramatic, and, to an attentive and alert clinician, should be readily recognizable. These difficulties can be measured objectively by neuropsychological tests, and studies have shown that significant impairment is not uncommon.5-24

Adults with Lyme encephalopathy describe their problems as an increase in the forgetting of names, conversations, phone numbers, directions, and appointments. Many are highly distractable and misplace objects, forget how to drive their own cars, frequently get lost driving in their own neighborhoods, cannot recall information they've just heard, seen on TV, or read in books or newspapers. Many rely heavily on reminder notes and some have been known to tape Post-it notes to themselves to remind them of tasks in progress. By the time a doctor sees these patients many are totally dependent on family members for assistance with daily errands and meals.

Commonly patients with Lyme encephalopathy are mentally overwhelmed by the simplest of tasks, like composing and mailing a letter or writing a check. Many patients require "lists" for everything from the important to the mundane, highlighting the fact that they are no longer able to multitask (or do more than one task at a time), and can neither plan, schedule, nor prioritize—the given executive functions in individuals with healthy frontal lobes.

Outside the doctor's office, this breakdown in memory and attention translates into major vocational disability, resulting decline in financial status, and severe impact on quality of life.

Impact of Lyme encephalopathy on vocational functioning:

• A highly educated financial analyst who had sudden problems with math and dyslexic number reversals, fatigue and concentration, stopped work for fear of making major mistakes.
• A nurse quit her job because she was seriously afraid of giving patients the wrong medications or wrong doses of medication. She also feared giving wrong medications to the wrong patients.
• A building contractor nearly lost his business because he could no longer remember how to cost-estimate jobs, perform accurate measurements, or prepare building drafts.
• A controller stopped work and changed careers when simple bookkeeping became impossible and for the first time this accurate accountant was handing in reports with six-figure mistakes. With extensive training in math and accounting, this individual suddenly found it difficult to make simple change.
• Editors and teachers alike ended their careers when they could no longer remember basic spelling and grammar. The editor, who suddenly had problems distinguishing spellings of homophones like "pear" from "pair" or "there" from "their" or "they're", had a master's degree in English from an ivy league school and was qualified to teach English on a college level.
• A 27-year-old landscaper who could no longer run his own business due to complete confusion and could no longer function independently committed suicide.

Impact of Lyme encephalopathy on social functioning:

Problems of memory loss, inattention, and confusion result not only in job loss and consequent decline in financial status but in isolation and social withdrawal that accompany these changes in mental status and standard of living. Numerous patients with Lyme encephalopathy also experience sensory abnormalities such as extreme sensitivity to light, sound, and motion.4'8 These symptoms further isolate patients by keeping them homebound and/or dependent on caregivers for any travel outside of the home. Patients with acute dizziness and sound sensitivity (where a collapsed tolerance to environmental noise can cause physical pain, total distraction from tasks at hand, or make individuals withdraw and retreat to dark, silent locations) particularly tend to lead very restricted lifestyles, seldom even leaving their homes, rarely going to social gatherings or public places.

Impact of Lyme encephalopathy on independence:

In addition, memory and attention disturbances may cause numerous driving accidents. Many encephalopathic adults have complained about car accidents, near accidents, and difficulty driving, particularly on highways (with missed exits; inability to remember cars behind them or in their blind spots, etc), or at 4-way intersections where they have to remember instantaneous light signals or "go-ahead" signals of other drivers. One patient, an owner and enthusiast of SAAB automobiles for 20 years suddenly could no longer identify or locate the various switches, dials, and buttons on the car dashboard—a dashboard whose design has changed very little in 20 years. All of these hurdles add up so that ultimately travel is restricted and the Lyme encephalopathic patient is further cut-off from his/her premorbid independence.

With job loss, social withdrawal, an onslaught of unusual and unpredictable sensory abnormalities, and restricted transportation, comes a decline in ability to maintain one's sense of self-esteem. And, as the person with this organic brain condition who "looks well" to the public, but privately continues to intellecutally deteriorate, grows increasingly dependent on others to accomplish the simplest routines and errands, breakdowns subsequently occur in family and social relationships.

Impact of Lyme encephalopathy on psychosocial functioning:

Severe depression with suicidal ideation and suicide attempts, part of the Lyme encephalopathic picture and not situational in nature, further exacerbate the adult's overall decline in quality of life. Dramatic mood and personality changes ranging from lability and bipolar disorder to violence,g'21 obsessive compulsive disorder,g'11-12 psychosis, and Alzheimer's- and schizophrenia-like dementia9'22'2s-3° (severe and extreme manifestations of neuropsychiatric Lyme encephalopathy which have been extensively documented in the international medical literature), lead to destruction of families and, in less severe cases, erode patients' abilities to provide adequate and effective parenting.31 Fatigue and sleep disturbance (ranging from hypersomnolence to complete insomnia), again, independent of the depression and part of the constellation of Lyme encephalopathy, render patients, especially depressed patients, essentially nonfunctional.

The quality of life, then, for adults with Lyme encephalopathy is one marked by major declines in vocational, social, independent, psychosocial, and recreational functioning, and overall deterioration in cognitive and neuropsychiatric status. Patients who have lost their jobs, standard of living, ability to engage in activities with family and friends, physical and mental independence, and who are grossly immobilized by major depression or bizarre behavioral changes and sleep disturbance, individuals who have little concentration to focus on very much or for very long periods of time, or who can no longer sustain interest in former goals or hobbies, are clearly living from day to day, from minute to minute, neurologically impaired, invisibly disabled, and leading extremely curtailed lives.24

CHILDREN AND ADOLESCENTS WITH LYME ENCEPHALOPATHY

For children and adolescents with Lyme encephalopathy the most frequent complaints, mainly attentional and behavioral in nature, ultimately affect QOL areas of education and social development. Children with Lyme encephalopathy are not able to concentrate or study in school and not able to learn and remember new information. Intense fatigue prohibits students of all ages from keeping up with the pace and volume of schoolwork, staying awake in classes, and making and maintaining friendships. Acute sensitivities to light, sound, and multistimuli also make concentration difficult and can exacerbate personality and mood changes. Behavioral symptoms can range from sudden fussiness and irritability in very young children,15'32 to anger, rage, violence, major depression,9 and obsessive compulsive ritualsl 1-12 in children and adolescents. For example, one premorbidly polite, easy-going 1.3-year-old boy with Lyme encephalopathy exhibited sudden, uncontrollable cursing which resolved soon after antibiotic therapy.

Educational hurdles dramatically affect college-bound adolescents with Lyme encephalopathy as well. This group frequently requires non-standard forms of testing like special time-extended PSATs and SATs. Once in college, these students may flounder due to, heavy work loads and short semester deadlines, or struggle to adapt by scheduling classes around daily rest periods. Numerous college students with this condition however, drop out of school or take many class extensions (in excess of the traditional four-year program) and, again, with the supportive aid of tutoring.

Impact of Lyme encephalopathy on education:

Dramatic increases in attention and behaviorial changes cause students to fall behind in school. Aside from the invisible multisystemic symptoms and pain of Lyme disease, these unseen and poorly understood neurologic components cause children and adolescents to miss many school days, sometimes months to years at a time. Often, in-school tutoring is sufficient to carry them through difficult stages of their illness, but more commonly, at-home tutoring becomes necessary." Home-tutoring, which is expensive and, according to one estimate, can cost anywhere between $50 to $65 an hour,33 (and which normally would be paid for by the student's school district) is not universally accepted or implemented across school districts and from state to state.34 In fact, many schools do not cover tutoring for the "intermittently" chronically ill child—the Lyme disease student for example, who can be well one day and drastically sick the next.34 However, new and creative solutions are being experimented with in places like Suffern, New York, where attempts are being made to bring the homebound student into the classroom via video conferencing.3s

Impact of Lyme encephalopathy on social development:

The overall affect of Lyme encephalopathy on QOL for children and adolescents with this condition remains one characterized by disrupted education and resulting isolation, loneliness, and frustration. Unable to keep up with schoolwork or the daily activities of their friends, these individuals are soon forgotten by their peers. It is tragic to see formerly healthy children being raised as isolated invalids. As one Lyme disease children's support group leader explains, "It's as if these children are missing out on their own childhoods....There is a sense that the world is moving on without them."16

Major depression, a frequent presentation of the encephalopathic state (and not primarily situational in nature) complicates the young person's ability to develop normal, adequate coping skills. While adults with Lyme encephalopathy have already acquired years of education, and many years' worth of memories and experiences from which to draw upon for coping with the unusual pain and confusion of this organic condition, young children with Lyme encephalopathy lack this advantage. They are clearly at a loss to articulate or explain to themselves, their parents and families, friends, and most importantly, doctors, what it is that they are going through—what it is that invisibly comes and goes with such ferocity and unpredictability, making their lives something that they cannot begin to explain to anyone who has not experienced this condition. How. do you explain that the teacher talks but it's as if you don't hear any of the information? Or how do you explain your need to wear sunglasses indoors or earplugs at your family dinner table?

Probably the most disturbing aspect of QOL for a child or adolescent with Lyme encephalopathy is that many have been hastily misdiagnosed as having learning disabilities or attention disorders, or worse, hypochondriasis. Their complaints have been repeatedly written off, outright dismissed, or mistakenly attributed to psychiatric or psychologic problems.15'32 Parents of children with this condition are told that their child's problems are psychiatric even though tests have not been done to indicate such types of problems. Symptoms of Lyme encephalopathy may be frequently mistaken for multiple sclerosis, postinfectious encephalopathy of other etiologies, or psychiatric illness.37 This mislabeling can be emotionally devastating for the child and no doubt puts a tremendous strain on the entire family.

Children therefore suffer a similarly compromised quality of life—but a more tragic one in that they are in a situation where they are robbed of the ability to build essential self-esteem and confidence—core elements in normal human development., The impact of Lyme encephalopathy on children is one that strongly affects functional areas of education, interpersonal/social development, psychosocial development, and recreational functioning. A Centers for Disease Control study performed in 1992 in New Jersey revealed an astronomical social and economic impact of Lyme disease in children: Medical cost average $96,000; educational loss for students of at least half a year of school; decline in school performance and disruption of social activities.38 So, whereas adults with this illness, particularly with the more neurologically debilitating aspects of this disease, suffer a decline in vocational functioning and hence total professional QOL, children are most affected in their education, which is, in effect, a preparation and indicator for success in future vocational functioning.

CONCLUSION

It is now strikingly apparent that adults, children, and adolescents with Lyme encephalopathy share a severely compromised quality of life. Even on "good days" when they look and appear well and seem to be functioning up to speed, they continue to live on the fringes of mainstream society, some intensely confused but hiding it as they fight to cling to jobs or to keep up with their education; others quietly disoriented yet trying to remain selfsuff'icient; and the majority cognitively and/or psychiatrically impaired. While not visibly handicapped, these patients are challenged daily by malfunctioning cognitive, sensory, and neuropsychiatric systems which leave many of them living at home—many in their parents' homes—unemployed, functionally dependent, isolated, depressed and suicidal, apathetic and increasingly unemployable.

Many have not been cognitively rehabilitated and continue to cost society millions of dollars in lost productivity and increasing insurance and disability claims. Others continue to cause an increased drain on special, expensive medical and educational resources needed to keep them functioning on a daily basis. Inevitably, a portion of these patients (ones who were originally inadequately treated, misdiagnosed, or simply undiagnosed) will likely pose a further burden to society via the phenomenal cost of long-term psychiatric and mental institutionalization and/or incarceration in jails.13'24 The cost of increased Lyme encephalopathic-related violence and crime is something that has been recently alluded to, yet requires further investigation.4,74,13'214'29 So, while the academic community continues to define Lyme encephalopathy as a "mild confusional state characterized by alterations of memory, mood, and sleep," the patients' experience is one of devastating, phenomenally expensive, invisible disability. Lyme encephalopathy affects all aspects of patients' glnality of life by halting intellectual growth and development, derailing professional and scholarly achievement, and ending futures that might have been promising or full of contribution to the betterment of society. The patients' experience of Lyme encephalopathy is that, in many cases, it is a long-lasting, damaging assault against an individual's total well-being, and one that is ultimately debilitating and unquestionably disabling.

The problem of Lyme encephalopathy is enormous and critical, and something that affects us all. The medical and research community must recognize the significance of this brain condition, its impact on patients' quality of life, and its future implications for society. It must encourage and support research which will advance our understanding and treatment of this serious, complicated, and frequent manifestation of Lyme disease. Special thanks to Cynthia Onorwto, Lyme Disease Patient Advocate, in the preparation of this manuscript. Special thanks to Marian Rissenberg, PhD, Neuropsychologist in private practice, Katonah, NY, for her suggestions. Additional thanks to Martha Agricola, FM', Martha Kramer, Suzanne Sugar, Pat Walsh, and members of the Lynne Disease Coalition of New York and Connecticut for their support and encouragement.



#28 SkunkyAroma

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Posted 01 August 2016 - 02:07 AM

TOUCHED BY LYME: Kathy White, telling it like it is to the CDC

Kathy-White-LAGKC-poster-lr1-300x225.jpg

This Lyme advocate had to miss a planned meeting with CDC officials because she had a stroke. She delivered her presentation to them from her hospital bed, via telephone. Here’s what she said.

 
 
Hello. My name is Kathy White. I had a stroke 12 days ago and am talking to you from my hospital room in Kansas. I got a tick bite in 1998 in Kansas City, Kansas, while I was supervising recess in a grassy area of a schoolyard.  I got Lyme disease and babesia and have been sick ever since. I had to quit my teaching job. For the past 14 years, I have been an officer of the Lyme Association of Greater Kansas City. Our organization was formed in 1993. We serve people throughout Missouri and Kansas and also other states. We publish a brochure and a monthly newsletter. We give information to patients, the public, and medical professionals, and education packets to schools.  We cooperate with the efforts of the Lyme Disease Association. A major concern of ours is difficulty getting diagnosed and treated. Most doctors in our area are unable to diagnose and treat us or refuse to do so.

 

There are 3 aspects of Lyme disease prevention: (1) preventing tick bites, (2) preventing early Lyme disease with antbiotics immedately after a tick bite, and (3) preventing the disease from becoming chronic. (1) Many tick bites could be prevented by controlling the deer population, using safe pesticides, and using permethrin on clothing. (2 & 3) The CDC can easily prevent many cases of early Lyme and chronic Lyme by making doctors aware that Lyme is in every state, by encouraging prompt and adequate treatment on the CDC website, and by dropping their website link to the IDSA treatment guidelines and creating a link to the ILADS guidelines instead.

 

The CDC is funded by taxpayers in all 50 states. Therefore, its employees should care about Lyme disease victims in all 50 states, not just the Northeast. The CDC should work for everybody. Statements on the  website mislead doctors in most states into thinking that Lyme disease is just in the Northeast and Upper Midwest and not in their state. This causes many doctors to fail to diagnose it and even to refuse to test for it. If a patient does persuade a doctor to give the test, and the test is positive, the doctor often says, “Your test was a false positive, because we don’t have Lyme disease here.”  One patient in St. Louis was told, “Our hospital has had a number of false positive tests lately.” The statements on the CDC website that say Lyme disease is mostly in the NE and Upper Midwest should be revised to say that, although most reports are in the NE & Upper Midwest, Lyme is actually in all 50 states, but it is vastly underdiagnosed and underreported in most states. Support groups have helped thousands of patients whose cases did not get reported, even if they met reporting criteria.  Many people in Missouri, Kansas, and other states are going from doctor to for many years before they finally get diagnosed. Even at this late date, most people improve with long-term antibiotic treatment. There are many stories of children who missed years of school, but after lengthy treatment managed to get a GED and attend college. Long-term treatment is getting children out of bed and out of their wheelchairs.

 

The CDC should quit endorsing the ELISA test. It misses far too many cases and causes people to become disabled from lack of a diagnosis.

 

The CDC website says that ticks should be removed with tweezers, and it discourages the use of tick removers. This is unwise. Researchers at Ohio State University found that tick removers that slide under a tick are superior to tweezers for removing the tiny nymphs and do a better job of getting all the mouth parts out and most of the cement. Wherever tweezers are mentioned, the website should say “fine-pointed tweezers.” It is very difficult to remove the tiny ticks with tweezers without squeezing the gut. Many people have developed Lyme disease after a tick was removed with tweezers, even if the tick was attached only a short time.

 

It does not take at least 24 hours for a tick to transmit Lyme disease. Although most ticks take about that long or longer, many people are becoming infected in less time than that. Dr. Willy Burgdorfer said at a Lyme disease conference at Bard College in 1999 that about 5-10% of ticks that are carrying Lyme disease have a systemic infection and have the disease in their saliva and can transmit it as soon as they bite. He said, “There is no safety window.” That means that all statements that say it takes “at least” so many days or hours for a tick to transmit Lyme disease are false.

 

The CDC website says Lyme is largely underreported, especially in endemic areas.  It should not say, “especially in endemic areas,” but rather “especially in states where many doctors don’t know the disease exists and don’t diagnose it.” It is vastly underdiagnosed in most states.

 

In 1990, Missouri ranked eighth in the nation in reported cases of Lyme disease. Then the CDC decided to call the disease STARI, because of genetic differences in the bacterium, and because it was being transmitted by lone star ticks.  All the signs and symptoms in Missouri are exactly the same as Lyme disease. There is not a single symptom of Lyme disease that people in Missouri are not getting after lone star tick bites, except the ACA skin condition found in Europe. A study by Dr. Ed Masters found that patients in Missouri are twice as likely to develop arthritis as Lyme patients in the rest of the country.  This is not a mild illness.  There are many strains of flu, but they are all called flu.  If different bacteria cause Lyme symptoms, they should all be called Lyme so they can be treated.

 

Several studies have found Lyme disease Bb bacteria in lone star ticks. Calling the disease STARI is causing thousands of cases to be undiagnosed in the central and southern states. Children have missed years of school, and adults have missed years of work, because the CDC has misled doctors into thinking that the disease in this area is a mild illness that can be ignored. Lyme disease and STARI are both in MO.  The fact that STARI is in Missouri does not prevent Lyme disease from also being in the state, just as one strain of flu does not prevent other strains of flu from being in the same state at the same time.

 

The CDC’s link on their website to the IDSA treatment guidelines encourages doctors to underdiagnose and undertreat the disease. This needs to change. Overtreating the disease at the beginning can cure it. Undertreating it at the beginning causes people to need years of treatment later. It’s not just the lengthy treatment later that leads to the development of drug resistant bacteria; undertreating a bacterial disease at the beginning also contributes to drug resistance.

 

Almost everyone in our support group has chronic Lyme disease and babesia. Babesia is quite common in the central states. An unpublished study by Kansas State University found babesia duncani and Lyme disease Bb bacteria in lone star ticks and mice on two farms in Kansas. All six people that live on those two farms have been infected with both Lyme disease and babesia.

 

A statement on the CDC website about babesia says, “Babesia is mostly in the Northeast.” It should be revised to say, “Most reports of babesia microti are in the Northeast, but there are other strains of babesia in other parts of the country.”  The vast majority of doctors in most states are unaware that babesia is in their state, and they are thus not diagnosing or reporting it.

 

The babesia reporting criteria says that if a patient has a positive IgM test for babesia, but the IgG is negative, the IgM must be a false positive. This statement should be removed from the critera. It’s an  opinion. There’s no evidence for this. Many patients with Lyme disease and babesia may never develop IgG antibodies, because these diseases lower the immune system and can prevent the antibodies from developing.

 

The CDC website says prophylactic treatment of RMSF fails to prevent the disease. Actually, in the study on this subject, lab animals were given only a single dose of doxycycline. There is no proof that longer treatment wouldn’t work.  People given 4 weeks of treatment for a tick bite to prevent Lyme disease are not getting RMSF or ehrlichiosis.

 

The purpose of the CDC is to help people, not to harm them. Please stop making us disabled. Please stop misleading doctors into thinking that there is no Lyme disease or babesia in their states. Please remove the  link to the IDSA guidelines from your website. Please allow us to get diagnosed and treated adequately. Thank-you.

 

 

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For folks having severe muscle spacicity issue with Lyme along with muscle weakness and even muscle wasting syndrome, you must fight off your candida as anyone with longtime Lyme has a severe candida infection.  Luckily cannabis oil kills both Lyme spirochettes and also the cancerous Candida fungus.  Eventually strong doses of cannabis oil everyday will unlock your muscles.  If you are anything like me, my muscles were crushing me alive with unimaginable tightness/stiffness.

 

I did find another method that works great for for temporary muscle and joint-pain relief when I was low on cannabis oil for a few months,  it is DMSO and Magnesium chloride flakes.   I pushed the limits and would rub my whole body down with 99% pure DMSO.   I had a spray bottle that was filled with pure distilled or reverse osmosis water and added as many pure magnesium chloride flakes as I could get to dissolve into the water.  Immediate after rubbing down with DMSO I would spray my whole body down with the Magnesium chloride water.  When the DMSO and magnesium meet there is a warm sensation followed by a wave of relaxation of mind and muscles.   Don't get me wrong, the DMSO can feel prickly specially at the 99% concentration, but the muscle pain relief I get from it is worth 20 minutes of very slight stinging on my skin.  In fact I think it is the stinging that is part of the healing process because when I am feeling fine and do the same process there isn't any noticeable stinging at all.

 

Just wanted to pass that on to people that experience severe muscle pain from Lyme.  It also helps greatly with the muscle pain from herxheimer reactions.   Cannabis oil isn't always easy to get to heal yourself fully, so hope this can take some of the pain away until you are able to get a source for quality, tested, decarboxylated cannabis oil.

 

 

 

 

 

 

 







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