tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Another great article. Thanks for the find.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
bettyg
Unregistered
posted
copying this here to read and for others... AND OTHER RELATED LYME ARTICLES THEY MENTIONED BELOW!! ******************************* betty all great informative article!
8man; good find; thanks for posting!
Daryl Hall of the rock duo Hall & Oates poses at his Bray House property in Kittery Point. Hall has lived with Lyme disease for more than three years. Rich Beauchesne photo
Editor's note: Seacoast Media Group recently asked musician and Kittery Point, Maine, resident Daryl Hall to serve as guest health editor for a story package about Lyme disease.
Please click on the "related stories" for more. ************************************************
With every spring season comes warnings about Lyme disease. The bacterial infection is most often contracted through the bite of the black-legged or deer tick and, according to the Centers for Disease Control (CDC), the highest incident rate for the disease can be found in states in the Northeast.
Rash and flu-like symptoms can accompany the infection, but in some cases the disease includes arthritic, musculoskeletal, cardiac and neurologic manifestations, which can become debilitating and devastating.
In 2005, the CDC reported more than 23,000 cases of Lyme disease, with a national average of 7.9 cases per 100,000 people.
In the top 10 states, the average was 31.6 cases per 100,000.
In New Hampshire, there were 265 reported cases in 2005, and while the incidence rate may seem small, the consequences of the disease can be monumental.
Musician Daryl Hall has lived with Lyme disease for more than three years and is a vocal advocate for education about the disease and its treatment.
Hall says that for him, the symptoms of the disease can come and go. When he was first diagnosed, he was forced to cancel show dates in the summer of 2005 in order to recuperate from his symptoms.
"I have good days and bad days. I was fine for four months then I might have tremors, headaches, fatigue. It's like a roving street gang of germs. There's no cure, but you can control it," he says.
And it's the cure that has created controversy, with one mainstream camp arguing that Lyme disease is rare, easy to diagnose and treatable with just a few weeks of antibiotics.
Others, like Hall, feel the medical community is under-diagnosing the disease, that the treatment is not as simple or quick as it seems and that chronic Lyme disease needs to be acknowledged as a serious health issue.
"There are two very, very strong-feeling camps.
One camp is really sure that if you're bitten by a tick you get tests, medicine.
But with the chronic disease, that won't put a dent in it. It manifests in so many ways. It can lead to heart disease, depression. It can be so serious that people have died. It's a battle," says Hall.
Hall recounts his own experiences with the disease and its treatment in order to raise awareness about the chronic illness.
"I find that when I talk about this, I'm going to get some doctor who says that I'm full of crap, that it's not really as prevalent as we say. But they're wrong and I'm right. I'm one of the people on the front lines, one of the people who suffer. It's very controversial," he says.
What is not in dispute is that treatment must be started as early as possible in order to avoid long-term health issues and prevention is key, especially in the late spring and early summer months.
Avoid woody and bushy areas, use insect repellent and check your skin and clothes for ticks each day.
Watch for early signs of infection in a circular rash for as much as three to 30 days after being bitten by a tick. END ***********************************
Lyme treatment at center of debate
***************************************** What is Lyme disease?
***********************************
Prevent Lyme Disease with the "three Cs"
Drink to your health
Staying healthy involves drinking plenty of water -- some experts still recommend around two quarts a day. To keep up with this hydration regime many people keep a water container handy at work or play.
A good water container needs to be easy to clean for good hygiene and constructed of safe materials.
If you have a plastic water bottle, look at the number in the triangle on the bottom to help determine what kind of plastic it is. From a health perspective, some are better than others.
Single use plastic water or fruit juice containers (usually #1 plastic) are not easily cleaned so they shouldn't be reused. ------------------------------------
But repeated-use containers are not always the best choice either. Unfortunately, even some of the most popular, durable, repeated-use containers might be constructed of plastic that contains chemicals that are endocrine disruptors. ------------------------------------------------
The human body's endocrine system regulates various body functions ranging from metabolism, growth, and reproduction.
It does this by sending messages in the form of hormones, produced by special glands, throughout the body via the bloodstream.
These hormones deliver their messages to organs like the liver by attaching themselves to receptors on the cells of the target organ.
Endocrine disruptors are chemicals that mimic, inhibit or disrupt the human hormones that are sending messages to organs and tissues.
There are a variety of chemicals that are endocrine disrupters.
One of these chemicals is bisphenol-A, or BPA. ---------------------------------------------
If you want to avoid BPA in plastic bottles, the best practice is to avoid some of the #7 bottles that are made of polycarbonate and that have been popular for sport bottles and baby bottles.
The continual use, repeated dishwashing and storage of acidic drinks such as fruit juices in these containers may cause chemicals to leach out, thereby increasing exposure. Even though the manufacturer may say "dishwasher safe," it's probably best to wash by hand, using warm water with a mild detergent and then rinsing thoroughly. ----------------------------------------
There are alternatives to polycarbonate plastic bottles.
When it comes to baby bottles, remember the tried and true glass bottles with latex (natural rubber) nipples.
For other uses, #2 and #4 polyethylene, #5 polypropylene, as well as containers made from a new plastic like copolyester (which is also coded as #7), are BPA-free choices. -----------------------------------
Also, inert containers made of glass or stainless steel are options as well.
In fact, if you are an outdoor enthusiast where proper hydration is key, you may want to switch to a stainless steel container.
Another advantage of these bottles is that they don't impart taste to the liquid stored and are therefore perfect for your beverage of choice.
In short, when we drink to our health, it's a good idea to consider not reusing single use plastic bottles, limiting the use of your existing polycarbonate bottles, or switching to stainless steel and using glass for longtime storage of drinks especially fruit juices.
This column was submitted by David McCaskill, an Environmental Engineer with the Maine Department of Environmental Protection's (DEP's) Bureau of Remediation and Waste Management.
In Our Back Yard is a weekly column of the DEP.
E-mail your environmental questions to [email protected] or send them to In Our Back Yard, Maine DEP, 17 State House Station, Augusta, ME 04333.
Practice the 'three Cs' to reduce likelihood of Lyme Disease
AUGUSTA -- The Department of Health and Human Services' Maine Center for Disease Control and Prevention reminds Mainers that while it is important for our overall health to enjoy the outdoors, it is also important to take some simple precautions that will reduce one's chances of tick bites in order to prevent Lyme disease.
Clean up unnecessary standing water, rain gutters, leaf litter, brush and logs in order to reduce tick (and mosquito) habitats around the yard.
Cover up with a long-sleeve shirt and pants, and use a DEET-containing insect repellent to reduce the chances of getting bit by ticks (and mosquitoes).
Check your skin and your children's skin daily for ticks when you have been outside.
Additional information on Lyme disease can be found at www.MainePublicHealth.Gov under "Lyme disease." END ************************************
Lyme treatment at center of debate
Marguerite Mathews poses at the West End Studio Theatre on Islington Street in Portsmouth. She has experienced chronic Lyme disease. Rich Beauchesne photo
"The debate about the existence of chronic Lyme -- that is Lyme-type symptoms that have lasted longer than six months -- has been around for quite some time," says Dr. Don McNeel, of Hampton's Seacoast Lyme Center.
It's a hot topic, with camps in the medical field at odds with each another and those dealing with devastating health issues feeling caught in the middle.
False-negative test results occur frequently, a fact on which both sides in the debate agree.
It's the treatment that lies at the center of the battle.
The usual course is a two- to four-week regimen of antibiotics. But some familiar with the issue say that's not always enough.
Chronic cases exist. Symptoms may subside after treatment, appear to vanish then re-emerge with a vengeance, often with more symptoms and worsening health.
The doctor you choose after the first treatment fails can determine whether you find support or a revolving door of specialists and no relief, says Marguerite Mathews.
For a number of years, Mathews, the co-director of Pontine Movement Theatre in Portsmouth, has lived a hellish health existence, one many with chronic Lyme experience, she adds. It started with a round of doctors, a number of misdiagnoses and in some cases being told it was in her head.
Many patients will find themselves bouncing between primary-care providers and a variety of specialists from the fields of infectious disease, neurology, rheumatology, orthopedics, pain management, even psychiatry, says McNeel.
"After all the tests come back normal ...; they end up being referred to the psychiatrist for 'somatization disorder,' 'anxiety' or 'depression,'" he says.
"If they're lucky, they'll eventually find their way to one of the organizations seated in the outsider camp, groups such as the Lyme Disease Association or International Lyme and Associated Disease Society (ILADS) -- those that believe it can take more than two weeks of antibiotic treatment."
The more traditional medical camp -- which includes the Infectious Diseases Society of America, the U.S. Centers for Disease Control (CDC) and National Institutes of Health -- tends to refer to the continued occurrence of symptoms as "post-Lyme syndrome," says McNeel.
"Their idea is that the bacterium is all dead after a short two-week antibiotic course but a residual effect occurs with the immune system. The ILADS position is that the bacterium is stealthy and hides from the immune system.
Therefore, you have to tailor the treatment for the individual patient. A set, two-to- four-week, cookie-cutter approach treatment may not work with everyone."
The CDC's adherence to the short-term treatment allows insurance companies to refuse payment for treatments outside that regimen, says Lorraine Johnson, in her article "Lyme Disease: Two Standards of Care," a reference McNeel sites.
Johnson is a lawyer who is also the executive director of the California Lyme Disease Association. "I do not believe that prolonged treatment is experimental," Johnson says.
"It is how other persistent or relapsing infections in general have been treated for years (e.g. tuberculosis, leprosy, bone infections, etc).
In addition, I believe that most of medicine is practiced in the grey zone of uncertainty where the medical evidence is not clear -- in these circumstances we have to rely on the clinical judgment of the physician and this clinical judgment should not be constrained by treatment guidelines (like those of the IDSA) that preclude treatment options. "
Mathews' symptoms started with what appeared to be a flu, with four days of high fever. Then, in late spring, she says she began experiencing "incredible muscle pain in my shoulders and neck...;. It would wake me up. Nothing relieved the pain."
First came a flu diagnosis; then one for muscle injury and a prescription for pain.
"The next day I woke up and my face was paralyzed. I knew people that had Bell's palsy ...; I knew it was a possibility, it was not stroke."
Mathews actually tried to go on with a performance booking, but ended up at the hospital.
She was diagnosed with Lyme disease and put on a "strong dose of antibiotics and anti-viral medication, 'cause ticks can carry both (bacteria and viruses)."
Johnson's article explains the difficulties in making a proper diagnosis stem from the lack of sufficiently sensitive and reliable biological markers of the disease.
She adds that the most beneficial treatment for persistent Lyme disease has simply not been established.
"No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment," she writes.
In addition, she says, neither side has the scientific evidence to fully support its viewpoint.
"Outcomes research is limited and conflicting," she says. "The point, of course, is that the science underlying both the short-term and the longer-term treatment options is equally uncertain."
When attempting to manage her care, Mathews found herself in no-man's land. She was treated and told "you're better now."
"That was August. ...; then in October I started feeling bad again, twitch things in the face, nerve pain in ear, loud ringing, muscles in pain. I went back to the doctor," she says. "I was also having vertigo, disorienting feelings."
A number of specialists followed. The frustration continued. Mathews was told there was nothing more they could do for her. At times she was told "it's in your head."
Frustrated, she started researching the subject and found support groups -- and for the first time conversation regarding the controversy.
"I saw the symptoms called 'active Lyme,' and another point of view...; that says Lyme is extremely complex, that it has different ways of hiding in the system ...; and like syphilis and TB, it requires long-term treatment to kill it off. It was frightening.
"Your symptoms are worse and you're in the middle of a political controversy. ...; So, when someone says, 'we have a way to treat you ...; to help you feel better,' I'm going with it."
Mathews reached out to Know Lyme in New Hampshire, and other support groups.
Until meeting in person, no one would discuss a particular physician for fear the doctor would be shut down by the medical board. "You try not to draw attention to doctors or the alternative treatment," she says.
Today, she's being treated with a combination of antibacterial medications. She expects to be on them for 12 to 24 months.
"My symptoms are enormously better. My face stopped twitching, the joint pain has decreased. I still have symptoms but they're much milder," she says.
And, she's one of the lucky ones, she adds.
She's met others in wheelchairs, or losing their sight from chronic Lyme.
"It feels so unfair. Boom, you're in the middle of this crazy stuff.
I also wonder why the CDC is so opposed to this treatment. They have no problem treating TB or malaria with long-term, antibiotic treatment; even teens with acne. But with this, they're denying it."
Seacoast resident Christy Cloutier Holmes has dealt with the illness for three years. Today it's in remission. Given her experience with chronic Lyme, she believes it can hit again at any time. "It already has," she says. "I've had my ups and downs."
Her initial diagnosis was depression. But the aches, pain, and exhaustion kept her digging. And she personally never felt she was depressed. Eventually, she was diagnosed with chronic Lyme and sought treatment from a local naturopath.
An average monthly treatment ran her $150, much cheaper than some drug regimens, but a lot on a working mom's salary.
In the end, the larger cost was time lost at work. The symptoms were so severe she lost an entire summer of work.
Today, she's careful, keeps watch on her health and works to keep her immune system strong. But she knows if her symptoms go into remission, it doesn't mean she's cured.
As the debate rages on, patients remain caught in the middle, unclear where to turn, not sure what to do.
"The danger is in trying to blame all of life's issues on a single infection," says McNeel. Life is complex and multifactorial. Neither side had the complete answer. Yet, the debate itself compromises patient care." END ************************************
IP: Logged |
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I was a fan of Daryl Hall, now I'm a really BIG fan. With all the political/financial pressure by insurance and pharmacy companies to deny the existence of chronic lyme. It's great seeing Daryl showing courage and conviction by publicly voicing his views.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Daryl (literally) ROCKS!!!
I like his description of the bugs as a roving street gang.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
For the Daryl Hall fans have you caught his "Live at Daryls House" free on line concerts?
They are great. I love to support someone who supports Lyme - plus his music is great.
Next concert is Sunday and they run for a month. You can view prior concerts, too.
Posts: 1761 | From USA | Registered: May 2006
| IP: Logged |
NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Wow! I know the other woman referred to in the article but haven't seen her for years. Now I now why.
Big Daryl Hall fan here and to think I didn't even know he lives just a few miles from me.
I hate to see anyone get Lyme but I believe that when people who are in the lime light ????? are affected, we all have a better chance of being heard.
Posts: 1129 | From Maine | Registered: Feb 2008
| IP: Logged |
bettyg
Unregistered
posted
up for weekend crowd to enjoy...
IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
ive been a fan since early 04 when someone gave me a cd of hall and oates greatest hits. I got lymed in summer 05.
So, when I heard daryl had lyme and he is one of the only ones that describes his onset as something similar that happend to me.
thanks for posting that link to his in home concerts. His shows are always too expensive for me to attend, so this is great!!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
daryl and amy tan tell it like it is.. good for them
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
all great informative article!![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic