Archive for the ‘Uncategorized’ Category

New Research to Prevent Lyme Disease

http://www.nbcnews.com/health/health-news/lyme-disease-treatment-would-prevent-infection-researchers-say-n441946

Dr. Mark Klempner of the University of Masachusetts’ nonprofit vaccine development arm, MassBiologics, states that they are working on a monoclonal antibody that specifically targets Lyme-causing bacteria that purports the highest level of immunity.

Using genetically engineered mice with human immune system genes, they immunized the mice using Borrelia bacteria and then collected the antibodies the mice produced. They identified four to be potent against multiple strains of Borrelia, the Lyme disease causing bacteria.

When testing the antibodies produced, a single injection protected them from a large dose of Borrelia even after several infected ticks bit the mice.

And while U.S. Biologic is working on a vaccine for mice, produced in pellets resembling kibble, Klemner states emphatically that their monoclonal antibody is not a vaccine, instead it stimulates the immune system to ward off infection.

Monoclonal antibody drugs have been used for various diseases including cancer. It is similar in approach to gamma globulin shots that were used to try and prevent tuberculosis and hepatitis.

The company is hopeful to start testing in humans next year.

Psychiatric Lyme/MSIDS

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When Lyme disease and the various coinfections that come with it (MSIDS or multi infectious disease syndrome) affect the brain it is often called Lyme neuroborreliosis or Lyme encephalopathy. It can mimic any psychiatric disorder and is often compared to neurosyphilis, with symptoms capable of lying dormant for years only to surface at an opportune time. These symptoms can be so crippling that a patient won’t leave the house. Sufferers may lose intimacy with friends and family due to misunderstood rage, depression,depersonalization, anxiety, hallucinations, and other severe cognitive impairment, including memory loss. Many are extremely sensitive to light, sound, and scents, making them prisoners in their own home.

https://www.holtorfmed.com/download/chronic-fatigue-syndrome-and-fibromyalgia/Lyme_Disease_and_Psychiatric_Disorders.pdf

One-third of psychiatric inpatients showed signs of a Borrelia infection according to Holdorf Medical Group based on a 2002 published study in the Journal of Psychiatry. The severest behavioral symptoms were reversed or improved with proper treatment, but not psychiatric medications alone.

Some of these symptoms include but are not limited to:
Memory impairment or loss (“brain fog”)
Dyslexia and word-finding problems
Visual/spatial processing impairment (trouble finding things, getting lost)
Slowed processing of information
Psychosis
Seizures
Violent behavior, irritability
Rage attacks/impulse dyscontrol
Anxiety
Depression
Panic attacks
Rapid mood swings that may mimic bipolarity (mania/depression)
Obsessive compulsive disorder (OCD)
Sleep Disorders
Attention deficit/hyperactivity disorder
(ADD/ADHD)-like syndrome
Autism-like syndrome
Crying spells

Disorders of the nervous system have been found in 15-40% of late stage Lyme patients (Caliendo et al, Psychosomatics 1995;36:69-74).

http://danielcameronmd.com/16-year-old-boy-lyme-disease-presenting-depression/  Here a 16 year old boy suffered from a myriad of symptoms including depression.  After being diagnosed clinically for LD he was put on 12 weeks of IV Ceftriaxone and improved in sleep, appetite, headaches, joint pain, numbness, distractibility, short-term memory, and emotional behavior.  Depression cleared without antidepressants and his IQ improved by 22 points and school performance improved.

http://www.bio.davidson.edu/people/sosarafova/assets/bio307/meprasse/page07.html  Although the typical literature states that there are 3 stages of disease in a certain order, it’s important to remember that some patients only go through one stage while others experience all three. Some may only go through stage 3 or late stage, which may include some of the more frightening psychological aspects.

https://www.psychologytoday.com/blog/why-can-t-i-get-better/201402/antibiotics-found-effective-in-schizophrenia

LLMD, Dr. Horowtiz, goes on record stating that antibiotics are effective in Schizophrenia. With irony he points out that the authors attribute the reason minocycline helped these patients is due to its ability to affect glutamate pathways in the CNS, blocking nitric oxide-induced neurotoxicity, and inflammation in the brain. He reminds them that minocycline is a tetracycline antibiotic that very well may be treating an infection. He also emphatically states that he has had several schizophrenic patients test positive for Bb, the agent of Lyme Disease. After taking doxycycline they improved significantly and with the help of their psychiatrist, were able to reduce and in some cases eliminate all of their antipsychotic medication. It is important to note that patients remained stable on antibiotics but their symptoms returned if they stopped treatment. He says a doctor should suspect MSIDS in psychiatric patients if they have a symptom complex that has good and bad days with associated fevers, sweats and chills, fatigue, migratory joint and muscle pain, migratory neuralgias with tingling, numbness and burning sensations, a stiff neck and headache, memory and concentration problems, sleep disorders with associated psychiatric symptoms.

Horowtiz also reports the work of psychiatrist Dr. Brian Fallon who has linked Lyme Disease to paranoia, thought disorders, delusions with psychosis, schizophrenia, with or without visual, auditory or olfactory hallucinations, depression, panic attacks and anxiety, obsessive compulsive disorder, anorexia, mood lability with violent outbursts, mania, personality changes, catatonia, dementia, atypical bipolar disorder, depersonalization/derealization, conversion disorders, somatization disorders, atypical psychoses, schizoaffective disorder and intermittent explosive disorders. In children and adolescents MSIDS can mimic Specific or Pervasive Developmental Delays, Attention-Deficit Disorder (Inattentive subtype), oppositional defiant disorder and mood disorders, obsessive compulsive disorder, anorexia, Tourette’s syndrome, and pseudo-psychotic disorders.

Children suffer horrendously as often they can not adequately communicate what they are going through.

John Caudwell’s young son, Rufus, started with panic attacks and other severe psychological issues out of the blue. Once a vivacious and charismatic child, he went eight long important developmental years being tossed from one doctor to another. For his story go here: https://www.youtube.com/watch?v=Y24QL-H5ZLU&feature=youtu.be

Related to this is PANDAS or PANS – pediatric acute-onset neuropsychiatric syndrome. This relatively new disease has some doctors concluding that either an infection or trigger causes the immune system to attack the brain. But, skeptics abound, and like Lyme Disease (MSIDS) there is plenty of disbelief. For one girl’s struggle through psych wards before Stanford doctors make bold diagnosis and treatment go to:  http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards?source=pkg

https://wordpress.com/post/madisonarealymesupportgroup.com/2008  A harrowing story of a little girl who was told by doctors she made up all her symptoms.  The parents were told to ignore her physical complaints.  They gave her strong immunosuppressants which exacerbated her symptoms.  The mother found a Lyme literate doctor who is also an expert in PANS/PANDAS.  She tested CDC positive for Lyme, positive for Babesia, Bartonella, Erlichia, and Mycoplasma, as well as PANS/PANDAS.

***If you don’t believe and support your child they will drown in the Lyme controversy propagated by the CDC’s horrifically outdated and abysmal guidelines of treatment of essentially 21 days of doxycycline for everyone regardless of symptoms.  One highly experienced Wisconsin Lyme literate doctor states that 80% of his patients with PANS/PANDAS has Lyme Disease, coinfections, and sometimes strep.  Doctors are not looking for this complex.***

http://mentalhealthandillness.com/tnaold.html  Psychiatrist Dr. Bransfield also has noticed patterns emerging after interviewing hundreds of patients. He estimates that aggressive behavior has been a significant issue for some, although many more have reported associated symptoms. He notes that aggression may only be present for a phase of the illness.

“In considering the behavioral symptoms, these patients can become suddenly suicidal with completed suicides attributed to Lyme disease. Homicidal ideation, urges, and behavior occur in some of these patients. Some adult patients describe struggling to not act on these urges. When these patients act on a homicidal urge, more commonly it is a child becoming assaultive to a sibling. Dissociative episodes sometimes occur with these patients occasionally accompanied with aggressive behavior and loss of memory.
Compensatory compulsions are common in an effort to compensate for the memory deficits. NPLD (neuropsychiatic lyme disease) can imitate a number of common psychiatric syndromes. It can be difficult to differentiate Lyme disease from rapid cycling Bipolar illness or Post-traumatic Stress Disorder. Eating disorders are common. Invariably these patients either gain or lose weight. Sometimes massive weight gain is also seen.

Neurological symptoms have been previously recognized as a component of Lyme disease. Cranial nerve findings begin before the cognitive changes are seen and can intensify again late in the course of the illness. There are times when the cranial nerve findings are more evident late in the day when the patient becomes tired and they acquire double vision, choke on food, or lose their ability to talk. Grand mal seizures are more significant with congenital Lyme cases, while complex partial seizures are seen in a notable percent of other NPLD patients. These seizures are effectively controlled with both anticonvulsants and antibiotics. Some neurological findings are common such as numbness, tingling, sensory loss, burning, weakness, tremors, myoclonic jerks, torticollis, and fainting. Ataxia is common in these patients who are often clumsy, which leads to frequent accidents. Myotonia is uncommon but I have been this in a few patients, and Parkinson’s syndrome caused by Lyme disease can also seen, although it is uncommon. A number of these patients have herniated discs after having Lyme disease for several years. I suspect, but cannot prove, there is a causal relationship between Lyme disease and herniated discs. Burning is quite specific to NPLD, but is also seen in herpes infections. The patient describes a sensation that a blowtorch is burning the skin. It can affect any part of the body. In some patients the burning migrates, while in others it remains in a given area. Both antibiotics and anticonvulsants relieve this symptom.”

Although Bransfield says Parkinson’s caused by Lyme disease is rare, it does happen.  I believe one reason it is considered rare is physicians are not considering or looking for tick borne infections, especially in diseases like Parkinson’s and Alzheimer’s. http://danielcameronmd.com/lyme-meningitis-manifesting-parkinsonism-fully-reversed-ceftriaxone/  This patient was misdiagnosed with Parkinson’s but had Lyme.  Treatment was successful with Ceftazidime 1g IV every 8 hours for 2 days followed by a 4-week course of Ceftriaxone 2 g IV. “Within 4 weeks of therapy, his headache had resolved and he walked independently without difficulty.” 

What is truly concerning is a recent CDC report dissuades the use if IV antibiotics for Lyme Disease.   https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/  These people misdiagnosed with Parkinson’s or Alzheimer’s may not be able to get IV antibiotics due to this report which was meant to frighten doctors and keep insurance companies from having to pay for it.

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Lymestats.org

Bransfield describes ten psychological issues that may be risk factors for aggression in MSIDS and include:

*Decreased frustration tolerance
*Decreased impulse control
*When the two above are mild they can be irritable.
When extreme, they can become explosively angry
*Hyposexuality and hypersexuality – both can cause interpersonal frustration
*Obsessive compulsive behaviors which results in intrusive thoughts, images, and compulsions that sometimes are aggressive
*Decreased bonding capacity
*Increased startle reflex (particularly increased acoustic startle)
*Hyper-vigilance and paranoia
*Delusions and hallucinations

http://www.igenex.com/psychological_effects.htm  Can a tick bite drive you crazy?
Doctors warn that Lyme disease may cause personality changes
By Valerie Andrews
, January 2004

“A recent European study shows that psychiatric in-patients are nearly twice as likely as the average population to test positive for Lyme.

Psychiatric Lyme has been linked with virtually every psychiatric diagnosis and can affect people of all ages and from every walk of life. A former honor roll student is diagnosed with Attention Deficit Disorder and pegged as a “problem kid” because he can’t sit still in class. A lawyer has to close her practice because she can’t concentrate and suffers from anxiety attacks. A young mother is so sensitive to noise that she can no longer tolerate her baby’s cry and is afraid that she will harm her child. A retired salesman develops a compulsive habit of writing all over everything—he covers everything from the tablecloth to matchbooks with meaningless scribbles.
Family members are baffled by these transformations; counselors and physicians are consulted, often to no avail. While these individuals may also have migrating muscles pain, headaches and problems with their joints—common signs of Lyme—these symptoms are rarely picked up in a mental health evaluation. And when traditional psychiatric medication fails to produce a cure, the patient grows more desperate.

The Search for a Diagnosis
‘Most people come to see me because they’ve got something wrong that nobody else can figure out,’ says Debra Solomon, MD, a psychiatrist who practices in North Kingston, RI. Fifteen years ago Solomon was confronted with a medical mystery. More and more patients were coming in with the same group of symptoms—fatigue, headaches, migrating joint and muscle pain, accompanied by anxiety, depression, and memory problems. When one of her patients turned out to have Lyme disease, she tested the others, and found that nearly all were positive.
Recent studies show that certain areas of Rhode Island have the highest tick population in the world. Today many of Solomon’s patients come from the island Jamestown, a small farming community where ticks are abundant. Among her cases are:
• A college student in her early twenties who started hearing voices. “She came from a good family and had no previous emotional problems,” says Solomon.
• A businesswoman who suddenly became manic-depressive. “In periods of high energy, she wouldn’t sleep and felt all-powerful. She’d start a new business and begin spending lots of money, then she’d crash.”
• A high school athlete had to drop basketball because he didn’t have the stamina and couldn’t get through his classes without falling sleep. “The teachers accused him of not paying attention, but he didn’t have the concentration to do the work.”
• A 40-year-old book editor who was gaining weight and getting lame in her left leg. “She couldn’t think or process information, and was worried about her job.”

‘Lyme affects nearly every person on this island,’ says Solomon, ‘yet each person responds to it in very different ways.’
How can a physician tell the difference between true mental illness and symptoms linked to Lyme disease?

With Lyme disease, a patient’s psychiatric symptoms don’t quite fit the textbook definition. There is usually no previous history of psychiatric illness. Symptoms often come in cycles. Patients usually do not respond well to psychiatric medication. And they often describe their problems in very physical terms.

Lyme patients often say, ‘There’s a wall in my brain and I can’t seem to move my thoughts from the back to the front.’ ‘This arises from encephalopathy, an inflammation in the brain that affects cognitive function,’ Solomon explains.
Symptoms often worsen as the Lyme bacteria grow active and begin to reproduce. At the same time, a patient may experience physical symptoms, such as fatigue, muscle pain or headaches. Flare-ups are often triggered by stress, as in the case of Bob C. who ran a shipping department for a manufacturing company. Bob had dozens of people answering to him, but Lyme disease made him anxious and unable to concentrate. Because he couldn’t think, he lost his job, and his symptoms grew more intense.
Family problems, economic changes, job loss, surgery, an auto accident, or a bad case of the flu, can send Lyme patients into a sudden tailspin. Along with antibiotics, these people need to rest—and do anything they can to lessen their emotional load.  The catch-22 is that chronic Lyme disease makes it hard to think and perform one’s daily tasks. This inevitably causes financial hardship and puts a strain on family relationships.

Effects of Lyme Disease on Marriages
‘My patients come in to talk about their marital problems and are surprised to learn that they are linked to an organic illness,’ says Virginia Sherr, MD, a psychiatrist who practices in eastern Pennsylvania, another region known for its high rate of tick-borne infections. Ninety percent of Sherr’s patients test positive for Lyme disease. She then has the job of describing to them just how this condition can affect the mind and the emotions.
Lyme disease can cause increasing irritability and dramatic flares of anger, says Sherr. ‘Suddenly you hear bone-cutting verbal assaults from people who are usually more measured and benign. They may have been harboring some small grievance for years, then that hot spot comes to life and they spew out all this venom. Such outbursts cause lasting wounds.’
While some Lyme patients become verbally abusive, others lose confidence and withdraw from social situations. Mary L. tried to explain to her husband that she no longer had the stamina for dinner parties and that she dreaded going out. The husband felt that she was faking it. ‘Mary’s husband and her internist, who knew little about Lyme disease, ganged up on her,’ Sherr reports. “The doctor said, ‘You used to be so full of life, but you’ve less yourself go completely. You’re not even trying!’
‘Physicians who don’t know that Lyme causes personality changes may be dismissive or sharply critical of the patient. Our goal should be to educate couples and help them cope.’
Sherr cites one devoted couple who are both infected with Lyme disease. ‘The man has major cognitive problems and the wife helps him with his memory. She has bouts of extreme impatience, yet he gently guides her through them.’ They have begun to weather the storm together—with the help of antibiotics and marriage counseling.

Lyme Disease and Domestic Violence
Lyme disease often strikes entire families and the result is a higher incidence of divorce, family dysfunction, and domestic violence,’ says Robert Bransfield, MD, a psychiatrist in Red Bank, New Jersey. ‘Tempers flare and you see increasing conflict.’
‘Lyme disease is like an injury of the brain,’ says Bransfield. ‘Patient are less able to think things through, and tend to act impulsively. A mother may suddenly lash out at her child and a husband may lose control and abuse his wife. We underestimate the role of infectious disease in domestic violence,’ he adds.
An aggressive response is more likely if, in addition to Lyme disease, a patient has another tick-borne infection called Babesia. More than one infection can be transmitted by the same tick, and when Babesia is added to Lyme, this may make the patient more aggressive. ’It’s like putting a match to gasoline,’ Bransfield says.
Bransfield has testified in court on behalf of such patients who have been accused of everything from assault to murder. (In one instance, a patient killed his partner, killed the family pet, then killed himself.)
People with Lyme disease alone usually don’t go to these extremes. However, they may be irritable and prone to sudden rages. Bransfield says young people are the most likely to act out. ‘I’ve seen so many straight-A kids whose grades suddenly start to slip. Then they rebel against the family and start fighting with their peers.’ They can also turn their rage against themselves. ‘I’m often on the phone with a teen in a state of crisis,’ says Bransfield, ‘Feeling suicidal comes in waves and these reactions are very hard to predict. However, these kids generally improve after being treated with antibiotics.’
Schools are becoming more enlightened about the problems caused by tick-borne diseases, Raxlen notes. In Newtown, CT, for example, teachers are asked to report any sudden dips in grades or unusual behavior that may be linked to Lyme disease. And many make special arrangements for at-home tutoring while the student convalesces.

Losing Control of Life
When Lyme disease goes undiagnosed—or isn’t treated long enough—it can bankrupt businesses and destroy whole careers.
A CEO of an insurance company was diagnosed with Lyme disease and given antibiotics—but he didn’t take them long enough. Months later, his symptoms returned with a vengeance. He had ghoulish nightmares and woke up drenched. At work, he felt anxious and couldn’t concentrate. Eventually he forgot everything he’d learned about insurance. When he neglected to send in a disability payment on his own policy, the company denied his claim. ‘This man lost tens of thousands of dollars that would have helped him through his illness,’ says Raxlen. ’In the end, he had to sell his building and disband his business.’
People with Lyme disease often have trouble keeping up with ordinary tasks—one Connecticut housewife walked into the library, dumped her dry cleaning on the counter, and waited with increasing irritation for an attendant to help her. Finally a friend walked up and asked, ‘Don’t you know where you are?’
Lyme disease can also affect the part of the brain that deals with signs and symbols—making it hard to read maps or drive from place to place. A real estate agent with Lyme disease stopped at a traffic light. When the signal turned green she didn’t move. An angry motorist yelled, ‘What’s the matter with you. Why can’t you go on the green?’ The woman replied, ‘I’ve forgotten what green means.’
‘Lyme produces a microedema, or swelling in the brain,’ says Raxlen. ‘This affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts.’  ILADS (International Lyme and Associated Diseases Society) physicians say these symptoms can be alleviated or reversed with antibiotics, but stress that Lyme disease must be diagnosed early and treated right away.

Treating Lyme Disease
Most doctors prescribe three to four weeks of antibiotics for initial cases of Lyme disease. Yet according to the ILADS, this is not enough. The Lyme bacteria has a ‘cloaking device’ that enables it to hide in the cells and body tissues. If it’s not completely eradicated, symptoms will recur and with great intensity. To avoid relapses, ILADS recommended six to eight weeks of antibiotics.
When Lyme disease moves into a chronic stage, it’s more likely to lead to neurological or psychiatric conditions. Chronic Lyme patients are harder to cure and may need to take antibiotics—orally or intravenously—for months as a time. In this case, ILADS recommends continuing treatment for at least six to eight weeks after all symptoms are resolved.
‘Lyme disease is often misdiagnosed and it’s costing our healthcare system untold millions of dollars,’ says Raxlen. ‘No one is spared, neither young nor old and each individual can display a puzzling array of symptoms. This illness can have a wide-ranging affects on marriages, families and jobs.’”

http://vitals.nbcnews.com/_news/2012/05/22/11811061-jpmorgan-execs-lyme-infection-spotlights-need-for-quick-treatment?lite  Lyme Disease (MSIDS) is cited as a possible reason for JPMorgan Chase’s financial spiral due to an executive’s battle with it.

Dr. Otto Yang, professor of infectious diseases, David Geffen School of Medicine at the University of California, Los Angeles, states, “Which is why nobody should be surprised that people with long undiagnosed Lyme end up with lingering problems.”

Dr. Andrew Nowalk, an assistant professor of pediatrics at the Children’s Hospital of Pittsburgh at the University of Pittsburgh also states, “Just like syphilis, you can have it for years.  You give an antibiotic and you get a cure 100 percent of the time. But nobody is surprised if you end up with symptoms from syphilis for the rest of your life because it damages so many organs so dramatically. It’s the same concept with Lyme.”

Pathologist, Alan McDonnald also draws connections between spirochetal infection and Alzheimer’s, a disease known to cause severe cognitive and psychological issues.

https://m.youtube.com/watch?v=8TQj2137PGk
Dr. Alan McDonnald on Alzheimer Borreliosis Lecture London June 4, 2014

The conclusion formulated by Dr. Alan MacDonald, MD is that Alzheimer’s disease of the Subtype caused by Tertiary Neuroborreliosis demonstrates evidence by Borrelia specific DNA Probe analysis and by Microbiologic cultures of Autopsy Alzheimer’s Brain tissues producing live Borrelia in pure culture, that Alzheimer’s of the Tertiary Borreliosis type is an infectious disease. The Plaques in such cases are Borrelia biofilm communities.
https://madisonarealymesupportgroup.wordpress.com/2010/08/27/lyme-on-the-brain-by-tom-grier-part-3-a-lecture-notes/

Microbiologist, Tom Grier, asks, “Why have spirochetes been ignored as infectious agents of the human brain?”

“The short answer is that to save time and money we no longer do things old school by which I mean:
No one does brain autopsies and physically stains or cultures for the bacteria.  Instead we have gotten lazy and cheap in our research and tried to rely on blood tests and CSF fluid to give us the answers.  But those tests are wholly inadequate to detect living spirochetes sequestered inside brain cells.  The trouble with silver stains is that they cannot enter human cells. So for nearly a century it was reported that spirochetes were mostly extracellular and found outside all human cells.

Not only was this a wrong conclusion based on inadequate methods, but the consequences of not recognizing an intracellular infection was and still is dire. Why?  Because intracellular infections can be incurable or at the very least more difficult to treat; there is almost no way to determine an end point where a bacteriological cure has been obtained.

Next is that spirochetes are known to disappear by changing to cyst forms, and also by going intracellular.  So these puzzled researchers that were only seeing classical formed spirochetes in 1 in 20 MS patients, may have been seeing them all along and not realizing what they were seeing. How can we conclude this?  Researchers wanted to see if the infectious agent was still in MS lesions despite no visible spirochetes.  Researchers removed brain tissue at necropsy of human patients and inoculated the tissue into uninfected animals.  In some cases, this caused the infection to occur and show up in the brain of the animals; sometimes the classical-form spiral shaped spirochetes emerged.  All of this meticulous work was done prior to WW II, and completely untainted by today’s politics and special interests; yet this body of work is being wholly ignored.”

http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/87e8dfed931381b7852567c70012001f?opendocument

Psychiatrist Brian Fallon states:
“Lyme disease is aptly called the “new great imitator,” and it can imitate psychiatric disorders no less than medical ones…It should be borne in mind also that new clinical manifestations of Lyme disease are still being discovered and described. In cases of known Lyme disease, it is important for psychiatrists to take a comprehensive approach to treatment as so many aspects of the patient’s life-physical, emotional, cognitive, familial, sexual, social and occupational-may be significantly affected by the illness.”

If you or a loved one are suffering from psychiatric lyme/MSIDS, please go to:  www.lymenet.org/SupportGroups/

For a great article about on-line counseling:  https://www.ruschellekhanna.com/onlinetherapy

There are online support groups as well as physical support groups. Take the first step today and contact your local Lyme/MSIDS support group. You’ll be glad you did.

Can ME/CFS Be Caused by Lyme?

http://solvecfs.org/what-is-mecfs/

What Is ME/CFS?
Myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), also known chronic fatigue and immune dysfunction syndrome (CFIDS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life.
What are the symptoms of ME/CFS?

The most common symptoms of ME/CFS include post-exertional malaise (PEM), unrefreshing sleep, concentration problems and muscle pain,  typically lasting at least six months.
Post Exertional Malaise (PEM) – PEM is a cardinal symptom of ME/CFS. PEM occurs following mental or physical exertion and is described as worsening symptoms lasting 24 hours or more.
Unrefreshing Sleep – Disrupted and unrefreshing sleep is another hallmark of ME/CFS that causes patients to wake up feeling tired even after periods of rest, to experience excessive daytime sleepiness and to have difficulty falling asleep and staying asleep.
Concentration Problems – Many ME/CFS patients consider concentration problems to be the most serious and debilitating symptom. They experience difficulties with attention, concentration and memory that have been linked to problems in how the brain processes information – particularly processing speed and complex information processing.
Pain – For a long time pain was not thought to be a prominent symptom in ME/CFS, but muscle pain, joint pain and headache are common in ME/CFS patients.  It is likely that these four major symptoms of ME/CFS are intertwined, each affecting the other and potentially exacerbating the disease. This is why physicians who understand ME/CFS try to treat pain and sleep disturbances with medications in an attempt to relieve the severity of the overall ME/CFS symptom complex.

The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are disabled by the illness and there’s often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends and the public to understand the challenges of the condition.
It is not uncommon for people with ME/CFS to have some of these symptoms:
Visual disturbances (blurring, light sensitivity, eye pain)
Difficulty maintaining upright posture, dizziness, balance problems and fainting
Chills and night sweats
Gastrointestinal disturbances
Allergies and sensitivities to foods, odors, chemicals, medications
Brain fog and cognitive impairment
Gynecological problems including PMS
Irritability, depression and mood swings
Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions.
Common conditions that occur along with ME/CFS:
Fibromyalgia
Orthostatic intolerance
Irritable bowel syndrome
Interstitial cystitis
Temporomandibular joint disorder
Chronic pelvic pain
Multiple chemical sensitivity

Who gets ME/CFS?
  At least one million people in the United States have ME/CFS and the condition affects millions more worldwide.  Although research has shown that ME/CFS is about two to four times as common in women as men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.
How is ME/CFS diagnosed?  Studies show that fewer than 20 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker that is conclusive. The process requires tests to rule out other conditions that may present similar symptoms before a diagnosis of ME/CFS can be established. It can take months.
Diagnosis can also be complicated by the fact that the symptoms and severity of ME/CFS vary considerably from person to person. Seek care first from the health care provider who knows you best and will work with you to rule out other possible causes of symptoms and identify other conditions.
How is ME/CFS treated?
Since no cause or cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatments that can improve symptoms, increase function, and allow people with ME/CFS to engage in activities of daily living. Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can be relieved treated.
Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management.
If you think you may have ME/CFS, take this quick online questionnaire to learn more.

http://www.prohealth.com/library/showarticle.cfm?libid=21516

Can ME/CFS Be Caused by Lyme Disease?
By David S. Bell MD

lgimage_21516

Question: 1) Can Lyme disease result in permanent ME, even if all signs of the bacteria are gone? Can the Borellia bacteria that causes Lyme Disease also cause ME? Which is worse: severe ME, or severe Lyme Disease?

Answer: These three questions all revolve around chronic Lyme disease, and will be answered differently by every ME/CFS specialist you ask. It is a subject that I had thought about a great deal, and I am aware that is a great deal of contention in the opinions. But with the understanding that we do not know all the answers, I will put forth my opinion.

In 1986 we had, over a two-year period in Lyndonville, New York, a large group of children and adults who came down with what we are now calling ME/CFS, or perhaps SEID1. Central to this outbreak was a group of children who suddenly became ill in October, 19852. Among their many symptoms was very prominent lymph node tenderness, and after consulting with the New York State Department of Health and the CDC, it was decided to biopsy the armpit lymph nodes in a group of these children. Although none of them had the characteristic Lyme disease rash, it was my thought that they could have Lyme disease, although the appearance of a cluster outbreak argued against this, as did the rare prevalence of Lyme disease in this area. The families signed the permissions and I explained to the children what was to happen, and one day we performed an axillary (armpit) lymph node biopsy on all eight children.

The tissue was carefully handled and divided into portions to study as much as possible on them. The standard tests were all normal, and routine viral and bacterial cultures were negative. All samples were sent for silver staining, at that time, the ‘state of the art’ to look for Lyme disease, and one lymph node came back positive. Further analysis on this positive sample was not done. Based on this positive, I treated the children with doxycycline which appeared to have a beneficial result. At a later time, a double-blind study with doxycycline and placebo did not show benefits. To my regret, none of this was submitted for publication.

In the intervening years, I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism.

This brings us to the underlying infectious organism that causes ME/CFS. I had the good fortune to study persons with post Q fever debility syndrome under the guidance of Professor Barry Marmion when I delivered to him some raw milk I was suspicious of. He had been following abattoir (slaughterhouse) workers with established Q fever who did not become well with the standard treatment3. In 2004 the CDC and Australian government did a prospective study looking to see who became ill following infection with Q fever, Ross River virus and Epstein-Barr virus in a well-designed and carefully controlled study4. One year after infection with one of these agents 6% developed CFS by the Fukuda criteria5. Of the many remarkable things in this study, it was 6% of those with EBV, 6% with RRV, and 6% with Q fever, three completely different organisms. To me, this meant that many infections could initiate the process of ME/CFS, including infection with the Lyme organism. That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs.

However, in my thinking, ME/CFS is defined by the symptoms, and not the initiating organism. If the disease turns out to be autoimmune6, this makes very good sense. It is as if several people got splinters, would we call them different injuries if one person had a maple wood splinter and another oak?

So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. If this is true then the three questions above are easy to answer.
References

1. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. 2015.

2. Bell K, Cookfair D, Bell D, Reese P, Cooper L. Risk factors associated with chronic fatigue syndrome in a cluster of pediatric cases. Rev Inf Dis. 1991; 13(Suppl 1): S32-8.

3. Marmion B, et al. Q Fever persistence of antigenic non-viable cell residues of Coxiella burnetti in the host – implication for post Q fever infection fatigue syndrome and other chronic sequelae. QJM. 2009; 102(10): 673-84.

4. Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon S, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006; 333.

5. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994; 121: 953-9.

6. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).

About:
David S. Bell, MD, is one of the world’s leading experts on ME/CFS, and is a pioneer in its diagnosis and treatment.

November: Dr. Brown on MSIDS, PANDAS & PANS

DrGregBrownMD-PediatricsAutismDr. Brown, LLMD, will be speaking at 2:30 Sat. Nov. 21, 2015 at the Pinney Library in Madison, WI.

Brown is the medical director for Serenity Health Center in Waukesha, WI, and is a board certified Internist who has been in practice since 1988 with extensive experience in Internal and Emergency Medicine.

Since 2006, he has been practicing functional medicine with a focus on the integrative medical treatment of Autism Spectrum Disorders, Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder and many immune, infectious, gastrointestinal, and systemic problems. His practice has grown to include chronic infectious disease particularly Lyme Disease (MSIDS), PANDAS (Pediatric autoimmune neuropsychiatric disorders associated with Streptococcal infections), and PANS (Pediatric Acute Neuropsychiatric Syndrome), and the behavior and functional impairments these infections can cause.

PANDAS was initially proposed as a disease entity in the mid-1990’s to describe children who developed the sudden onset of obsessive compulsive disorder and/or tics in temporal correlation with “strep throat” infection. Over time it became clear that the PANDAS model is too restrictive and it has been reformulated to PANS.

Dr. Brown also holds certifications in:
*Medical chelation
*Biomedical therapy in Autism spectrum disorder
*Hyperbaric Medicine
*Lyme Disease therapy by ILADS
*Defeat Autism Now! Practitioner and was part of an expert panel reviewing treatments for seizures in Autism Spectrum Disorder.

This will be a talk you won’t want to miss as there are few LLMD’s in Wisconsin who treat children.  He will speak on MSIDS, PANDAS, PANS, and Autism.

For one girl’s struggle through psych wards before Stanford doctors make a bold diagnosis and treatment, go to:

http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards?source=pkg#ooid=Rub3JicTqJviXwSCTLI_ySrpb5_3fCIR

Free Lecture on Native Diets

Thursday October 8, 2015 at 6:30pm at the Ambers Resort and Conference Center at 655 N Frontage Rd, Wisconsin Dells, WI, Dr. Waters will be giving a free lecture on native diets.  He will explain the the connection between a drastic increase in chronic disease and diet.  Q & A after the talk with Dr. Waters.