Response to Levadopa not proof of Parkinson's

An old article (2006), but it makes an interesting point or two about PD diagnosis.

Highlights: If movement problems don't lessen significantly with doses of the drug levodopa, sold under the brand name Sinemet or apomorphine, other neurologic disorders should be strongly considered. However, 30 percent of patients who do respond well to levodopa actually have a disorder other than Parkinson's. Levodopa restores levels of dopamine in an area of the brain that controls movement.

Parkinson's often misdiagnosed

Neurologists submit guidelines to identify movement disorder By Cheryl Clark UNION-TRIBUNE STAFF WRITER April 3, 2006 As many as 200,000 of the estimated 1 million people in North America who learn they have Parkinson's disease, a progressive disorder marked by tremors and slow movement, may be misdiagnosed because the condition requires special expertise to recognize and treat. They instead may have ailments with a far better prognosis, such as actress Katharine Hepburn's head tremor, or recurring strokes that may be treatable. But typically, they have diseases much more serious and aggressive than Parkinson's, such as supranuclear palsy or multiple system atrophy. NANCEE E. LEWIS / Union-Tribune Dr. David Song conducted tests on Parkinson's patient Ann Maier last week at UCSD's ThorntonHospital. Maier frequently monitors the disease's progression. Likewise, the academy said 5 percent to 10 percent of people who complain of tremors and stiffness have Parkinson's, but are told they have something else, such as arthritis. "From my experience, (these) patients are often told they have tendinitis, frozen shoulder, or 'you're just getting older, dear,' (or) 'You slept on your arm wrong,'" said Dr. Janis Miyasaki. "I've heard the most amazing things." This key message about misdiagnosis was issued today by theAmerican Academy of Neurology as part of its first comprehensive set of recommendations to doctors and patients on how to detect and treat Parkinson's disease. Miyasaki was one of 20 movement-disorder neurologists who wrote the guidelines. The recommendations, published as four reports in the journalNeurology, were released as 10,000 neurologists and others attended the academy's annual meeting at the San DiegoConvention Center. The conference will last through Saturday. "It's important for patients who have these symptoms to see a neurologist, and, if possible, a movement disorder specialist, because we have more experience in diagnosing these problems," said Dr. Oksana Suchowersky, lead researcher for two of the papers and director of movement disorders at the University of Calgary in Canada. Parkinson's disease Movement problems occur because of reduced levels of dopamine,a neurotransmitter that enables smooth and coordinated musclemovement. Signs that such a deficit is causing Parkinson's include: Patient improves after taking the drugs levodopa or apomorphine. Shaking or tremors affect limbs on only one side of the body. Walking turns into a shuffle. Movements are slow. Patients experience problems with balance. Handwriting becomes small and cramped. Ability to show facial expression is diminished. Speech becomes soft andmuffled. Symptoms progress steadily, not rapidly. Source: American Academy of Neurology Far too many people are being wrongly diagnosed by family practice physicians or other doctors who don't see Parkinson's disease that often, said Suchowersky and the other reports' authors. Ann Maier, 60, ofEscondido is an example of how Parkinson's can sometimes be misdiagnosed. Maier, a high school gym teacher for many years, told her primary care doctor that her right arm had gradually started to shake. "It wouldn't swing properly," she said, "and my handwriting changed so much. I couldn't read my own hen-scratch grocery list. And I was walking differently. But one side of my body was affected more than the other." During several visits over 18 months, she said, the doctor blamed her problems on a condition known as benign essential tremor. It took two years before she was referred to a neurologist, who diagnosed her with Parkinson's. Now, her disease is well managed with appropriate drugs, and she sees a neurologist to frequently monitor Parkinson's progression. Parkinson's symptoms While the guidelines might raise suspicion among patients that they won't be properly diagnosed, there is probably no need to switch doctors as long as the one providing treatment is a neurologist, Miyasaki and Suchowersky said. "But you can ask your neurologist if he or she is sure of the diagnosis. And any doctor who treats Parkinson patients should re-review their patients' histories as they follow them every year or two," Suchowersky said. About 50,000 people are diagnosed with Parkinson's each year based on clinical symptoms, whether they respond to drugs or show signs of the disease's progression. "Baby boomers are aging, and with that, we're going to see more Parkinson disease," said the academy's guidelines director Dr. William Weiner, chairman of neurology at the University of Maryland School of Medicine in Baltimore. Because a large percentage of patients with diseases that mimic aspects of Parkinson's have a more dire prognosis, he said, it's important that people be diagnosed correctly so they can make appropriate social and financial plans. For example, they may need a wheelchair or a nursing home sooner. "It's important for people to have some notion of what lies ahead," Weiner said. There is no blood, imaging or spinal fluid test that can detect the disease, which can only be identified definitively by an autopsy. The condition can occur in people as young as 30, such as actor Michael J. Fox, but usually appears after age 60. It is marked by loss of dopamine-producing neurons in an area of the brain called the substantia nigra, which shows up as pale instead of dark in an autopsy. Degeneration of brain cells manifests first with trembling on one side of the body, such as the hand or leg when it's at rest. Attempts to move appear hesitant because limbs feel rigid. Gradually, the disease progresses to create a stooped posture and normal walking becomes a shuffle. Facial expressiveness eventually disappears and patients begin speaking in a voice that is much softer than before. Parkinson's disease is not considered terminal, but its progression can result in pneumonia or urinary tract infections, which can be fatal. Latest research The academy's four-part guidelines emphasized these points: If movement problems don't lessen significantly with doses of the drug levodopa, sold under the brand name Sinemet or apomorphine, other neurologic disorders should be strongly considered. However, 30 percent of patients who do respond well to levodopa actually have a disorder other than Parkinson's. Levodopa restores levels of dopamine in an area of the brain that controls movement. Levodopa does not increase progression of Parkinson's disease, as many people have feared. Unlike many mimic disorders, Parkinson's can impair a person's ability to smell. The problem can be measured with olfaction testing. Falling as an early symptom and slowness or stiffness on both sides of the body suggest a condition other than Parkinson's. There are no data showing that nutritional supplements such as vitamin E protect against Parkinson's progression. Some clinical trials to test promising Parkinson's drugs require that patients not use any other medications or supplements that might confuse the studies' results. But many patients don't want to stop taking them, and that has made recruitment for clinical trials especially difficult. Anxiety and depression often are interwoven with Parkinson's as a result of changes in levels of certain neurotransmitters like dopamine. "Patients very often do not bring this up to the doctor, and doctors often don't bring it up," Weiner said. Treatments such as anti-depressant drugs do not interfere with other therapies used for the disease. The guidelines said that for some patients, the surgical strategy known as deep brain stimulation may have benefit. Movement difficulties may be improved with regular exercise and physical and speech therapy, which often aren't considered for Parkinson's patients. Many drugs besides levodopa can improve symptoms. It's important that physicians monitor their patients' illness over the years to make sure their Parkinson's symptoms don't change. Hoping for change The extensive guidelines are controversial because some doctors might view them as an attempt to write a cookbook that dictates how they should practice, Weiner acknowledged. But the guidelines are not a doctrine, he stressed. "We've looked at all the research in a systematic way to give order to the chaos that exists in the neurologic literature about Parkinson," he said. Robin Elliott, executive director of the Parkinson's Disease Foundation in New York City, touted the guidelines' emphasis on recognition of depression, sleep and memory problems in dealing with Parkinson's patients. "If you ask a group of patients what upsets them most about this disease, it's the fatigue, depression, sleeplessness – that's disproportionate in Parkinson patients," Elliott said. At the UCSD Medical Center's clinic for movement disorders, director Dr. David Song said he hopes the guidelines will encourage doctors to change certain practice patterns. The recommendations "promote better awareness about what Parkinson is and is not, and how to treat it with proven therapeutic strategies," he said. Unfortunately, he said, there are very few neurologists with expertise in movement disorders nationwide, so many other brain-disease specialists will have to step up. "Most of the time, diagnoses are made by general practitioners and primary care doctors," Song said. "All have a general knowledge of Parkinson but there is variability, and for that reason misdiagnosis can occur." Dr. Wendy Galpern, clinical trials program director for the National Institute of Neurological Disorders and Stroke, the federal government's funding arm for neurology research, characterized the guidelines as "the most rigorous and extensive summary of the status of the field." But, she said, it also "highlights lots of questions that aren't answered and points to many other avenues for research." Cheryl Clark: (619) 542-4573; cheryl.clark@uniontrib.com

 

 

Alzheimers & Lyme Disease

From the anecdotal department...

A comment from NY Times comments column on "Alzheimer's Anxiety," from a MD reader:

 

"Heard about a woman who had Alzheimer's with a bladder infection, so she got antibiotics. Guess what happened? She got over her alzheimer's. I bet she had Lyme disease. When the antibiotics were finished she went back to her Alzheimer's state."

 

http://www.nytimes.com/2013/11/17/opinion/sunday/alzheimers-anxiety.html?src=recg

 

Lyme Disease Community Blows the Whistle on Corruption Within the CDC

Good article on Truth Out about conflicts of interest in the CDC as regards Lyme disease treatment and vaccine development. A must read:

http://truth-out.org/opinion/item/20053-lyme-disease-community-blows-the-whistle-on-corruption-within-the-cdc

..."Of even greater concern is the fact that the CDC has been adamantly denying for years that the Lyme infection can persist past the recommended 2 to 4 weeks of antibiotics, despite a growing body of research that demonstrates otherwise. Seventy-seven peer-reviewed studies from 1977 to 2012 show that the Lyme infection can persist despite the recommended antibiotic treatment. Until the question of ongoing infection is firmly established, how can the CDC and the FDA allow anyone who has tested positive for a tick-borne illness to donate blood?"

CanLyme announces research grant policy

The Canadian Lyme Disease Foundation today announced its venture research grant policy.
http://canlyme.com/?p=5284

This is one aspect of our undertakings to move LD research forward in Canada and elsewhere. We announced previously in May of this year that we partnered with the G Magnotta Foundation for Vector Borne Disease in Ontario, Canada, to undertake human tissue research, both in live subject and post mortem study. CanLyme has now provided over $300,000.00 for this program that will will be housed in the now under-construction Humber River Hospital in Toronto, Canada.

Regards,

Jim Wilson
President,
Canadian Lyme Disease Foundation
www.canlyme.com

>

Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

This ongoing scientific study came to my attention today. It's being done in Holland, and the results should be known by spring, 2014. The sample size is pretty big -- 270 people. They are looking at the efficacy of intense IV therapy for Lyme (2000 mg of IV ceftriaxone 4 times a day). That's twice the dose I have done and most CLD (chronic Lyme disease)  patients I know have used. 

I'm pleased to see that the study recognizes ILADS as a legitimate medical entity with a set of treatment guidelines. It's also encouraging to see that this study is listed on the NIH (US National Institute of Health) web site. 

Estimated Enrollment:	270
Study Start Date:	September 2010
Estimated Study Completion Date:	February 2014
Estimated Primary Completion Date:	October 2013 (Final data collection date for primary outcome measure)

Estimated Enrollment:	270
Study Start Date:	September 2010
Estimated Study Completion Date:	February 2014
Estimated Primary Completion Date:	October 2013 (Final data collection date for primary outcome measure)

http://clinicaltrials.gov/ct2/show/NCT01207739?term=borrelia&rank=14

This study is ongoing, but not recruiting participants.

Sponsor:

Radboud University

Collaborators:

Sint Maartenskliniek

ZonMw: The Netherlands Organisation for Health Research and Development

Information provided by (Responsible Party):

Radboud University

The purpose of the study is to establish whether prolonged antibiotic treatment of patients diagnosed with proven or presumed PLD (as endorsed by the international ILADS guidelines) leads to better patient outcome than short-term treatment as endorsed by the Dutch CBO guidelines.

Condition	Intervention	Phase
Lyme Disease Borrelia Infection	Drug: Doxycycline Drug: Clarithromycin and hydroxychloroquine Drug: Placebo	Phase 4

Study Type:	Interventional
Study Design:	Allocation: Randomized Endpoint Classification: Efficacy Study Intervention Model: Parallel Assignment Masking: Double Blind (Subject, Caregiver, Investigator, Outcomes Assessor) Primary Purpose: Treatment
Official Title:	Persistent Lyme Empiric Antibiotic Study Europe. A Prospective, Randomised Study Comparing Two Prolonged Oral Antibiotic Strategies After Initial Intravenous Ceftriaxone Therapy for Patients With Symptoms of Proven or Possible Persistent Lyme Disease http://clinicaltrials.gov/ct2/show/NCT01207739?term=borrelia&rank=14

Lyme Diagnosis – Is it really that difficult?

This is what it takes to get an Infectious Disease doctor to recognize Lyme disease.

Morris Park police officer entitled to compensation over Lyme disease

Morris Park police officer entitled to compensation over Lyme disease
By Ben Horowitz, The Star-Ledger, Newark, New Jersey

November 12, 2013
http://www.nj.com/morris/index.ssf/2013/11/court_morris_park_police_officer_entitled_to_compensation_over_lyme_disease.html
or http://tinyurl.com/nt8kjs5

MORRIS COUNTY - A state appeals court today upheld a finding that a Morris County Park Police officer suffers from work-related Lyme disease and is entitled to temporary disability and medical benefits along with an oxygen treatment.

Margie Raimondi said she contracted the disease during horseback patrols of wooded areas frequented by deer, according to the appeals decision.

The county park commission had appealed the payments ordered by a worker's compensation court, arguing there was no conclusive evidence Raimondi has Lyme disease. 

Full story and comments: http://tinyurl.com/nt8kjs5

Partial List of Lyme Misdiagnoses - A to Z

Partial List of Lyme Misdiagnoses- A to Z

Posted by Shaun Burke on Facebook

 

A- ADHD, Alzheimer's, Adies Pupil, ALS, Autonomic Dysfunction, Ataxia, Anemia, Arthritis, Autism, Asthma, Atrophy, Argyll Robertson Pupil, Angina, Aggression, Allergies

 

B- Behcet's Disease, Bacterial Meningitis, Brucellosis, Bell's Palsy, Bursitis, Blurred Vision, Back Pain, Brainfog, Bipolar Disorder

 

C- Carpal Tunnel Syndrome, Chronic Fatigue Syndrome, Chondritis, Cranial Nerve Disorders, Cancer, Creutzfeldt-Jacob Disease, Crohn's Disease, Conjunctivitis, Chronic Pain, Cough, Constipation, Chills

 

D- Dementia, Droopy Eye Lid, Depression, Dermatitis, Dizziness, Disassociation, Diarrhea, Dyspnea

 

E- Epstein Barr Virus, Encephalopathy, Ear Pain, Erectile Dysfunction, Endometriosis, Esophageal Reflux

 

F- Fibromyalgia, Fifth's Disease, Flu, FUO (Fever Unknown Origin), Frozen Shoulder, Floaters

 

G- Guillain Barre Syndrome, Gynecological problems, Grave's Disease, Growing Pains, Genital Pain

 

H- Hepatitis, Headache, Hanson's Disease, Huntington's Disease, Hearing Loss, Hydrocephalus, Hypersomnia, Hair Loss, Heart Failure, Hyperactivity, Heartburn, Hypersensitivity, Hallucinations, Heart Rhythm Disturbances, Herniated Discs

 

I- Iritis, Inflammatory Bowel Disease, Immune System Disorder, Insomnia, Infectious Arthritis, Irritable Bladder, Increased Thirst, Incontinence

 

J- Jaundice, Joint Disorders, Juvenile Rheumatoid Arthritis, Jawbone Infection, Juvenile Idiopathic Arthritis

 

K- Knee Bursitis, Knee pain, Keratitis, Kidney Disease

 

L- Lupus, Leukemia, Learning Disorder, Lock Jaw, Lou Gehrigs, Lung Disease, Loss of Libido, Low-grade Fever, Low Body Temperature, Lymph Node Swelling, Liver Impairment

 

M- Multiple Sclerosis, Musculoskeletal Disorders, Migraines, Motor Neuron Disease, Mental Health Disorders, Myoclonus, Myopia, Muscle Cramps, Mood Disorders, Motion Sickness

 

N- Neuropathy, Noise Sensitivity, Nyctalopia (Night Blindness), Numbness, Nightmares, Night Sweats

 

O- Obesity, Obsessive- Compulsive Disorder, Osteoarthritis, Optic Neuritis, Orthostatic Intolerance

 

P- Prostrate Cancer, Peripheral Neuropathy, PMS, Photophobia, PTSD, Parkinson's Disease, Pick's Disease, Panic Attacks, Psychosis, Paranoia, Personality Changes

 

Q- Query Fever, Quintana Fever

 

R- Ringworm, Relapsing Fever, Restless Leg Syndrome, Rheumatoid Arthritis, Raynaud's Syndrome, Rib Soreness, Reactive Hypoglycemia, Radiculitis, Rage, Repression

 

S- Syphilis, Sleep Disorders, Sjogrens Syndrome, Spatial Disorientation, Suicidal, Schizophrenia, Sleep Apnea, Scleroderma, Sensory neuropathy, Splenomegaly, SIDS, Syncope, Stroke

 

T- Tourette Syndrome, Transverse Myelitis, TMJ, Tendinitis, Thyroid Disorders, Tremors, Tingling, Trigger Finger, Tinnitus

 

U- Uveitis, Undulant Fever, Urinary Tract Infections, Ulcers

 

V- Vertigo, Varicella Zoster Virus (Shingles), Vision Impairment, Vitamin D Deficiency, Vasculitis

 

W- West Nile Virus, Wilson's Disease, Whipple's Disease, Wandering Eye, Weight Gain/Loss, Weakened Immune System

 

X- Xerophthalmia (Dry Eyes), XMRV Infection

 

Y- Yeast Infections

 

Z- Zoster (Shingles), Zinc Deficiency

 

Novelist Martin Cruz Smith Reveals his Parkinson's disease

Author of Gorky Park and numerous other Russian spy novels has been hiding his Parkinson's disease from the public for 18 years. His wife has become his typist and assistant since he could no longer type, due to tremors in his hands.

Finally, Cruz opted for a Deep Brain Stimulator (DBS) implant in his brain, installed at UCSF Medical Center, and has gone public. Yesterday there were several stories about him and PD on NPR, NY Times and other news outlets. Here is one of the NY Times articles, plus a video.

I am particularly interested in DBS stories because I may opt for this treatment. Drug therapy for Parkinson's disease is annoying and has unwanted side effects for me. It works well for only about half of my waking hours. The other half of my day is experienced as either waxing or waning tremors, anxiety, and depression as the meds take effect or wear off.

If you see any reports, studies, or firsthand accounts of DBS, please send them to me or add a comment here on my blog. If you have a DBS and want to share your own experience with it including where it was implanted, how it was programmed, and whether you are happy with it, please comment!

http://well.blogs.nytimes.com/2013/11/11/novelist-reveals-a-twist-in-the-tale/?_r=1&

Rutgers researchers: Mold can cause symptoms that mimic Parkinson's

By Kathleen O'Brien/The Star-Ledger
Email the author | Follow on Twitter
on November 11, 2013 at 3:08 PM, updated November 11, 2013 at 6:08 PM

Rutgers fungus expert Joan Bennett had always been a skeptic of "sick building syndrome" – the notion the air in a building can be so toxic it makes people sick.

Then the home she owned in New Orleans was flooded by Hurricane Katrina in 2005. While others would mourn their losses, Bennett got busy taking swabs of mold, intent on studying them back in New Jersey, where she and her husband had temporarily relocated.

In collecting them, however, she said she immediately felt ill, despite wearing gloves, a mask and protective gear. The dizziness, headaches and nausea she experienced made her open to the possibility that small amounts of mold can harm people.

"The odor just made me feel horrible, and I thought, ‘Aha!’ Maybe there’s something in these gasses," said Bennett, now a professor of plant biology and pathology at Rutgers. "I became a convert."

From that research came today’s announcement she and her colleagues had located a chemical emitted by mold that gives fruit flies the symptoms of Parkinson’s disease.

Their finding was published today in the Proceedings of the National Academy of Sciences....

See the rest of the story:
http://www.nj.com/news/index.ssf/2013/11/rutgers_researchers_mold_can_cause_symptoms_that_mimic_parkinsons.html