"... the depth of ignorance is staggering." Alasdair Crockett(1968-2006)
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"When wealth determines access to the public forum, it causes distortions."
"To take just one of many examples, for the past several years , the need to eliminate the inheritance taxes on the wealthiest 1/100 of 1 percent of the families in America (the only taxpayers who are still subjected to it) has been treated as a much more important priority than the need to provide at least minimal access to health care for tens of millions of families who currently have no access to health care coverage at all." From "The Assault on Reason"
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So I guess the thing that is bothering me is what I see in people who have done treatment. As soon as they stop they become sick again and it is on again off again antibiotics for the rest of their lives. Has anyone gone on antibiotics and that was it - they where cured. I am doing my treatment right now for Babeisia and my head is full of question. I was perscribed the protocol f malaria because Babesios and Malaria are so similar. But they really arent that similar in the way the body deals with it. Malaria will kill you in short order. It makes you sick in a few days after you contract it. Babesios is just so different in its behavior. I ask one of my friends in the medical profession to look at it and he said that there was no evidence that the Malaria protocol was effective against Babesios its jsut what the medical community is trying right now. Well I just don't see any one trying anything else. Its very frustrating.
Glad to hear you have turned the corner. Seems consistent that you are in store for better days ahead! Rock On!!!!
Hope you have a very nice Fourth of July. I will be heading to the mountains for a little R&R and a sweet fireworks show over the lake. It's nice to get excited about leaving the house.
Yeah, the whole blood loss thing is not setting right with me. It has to be coming from somewhere? Your moms quote was right. Do "you" feel that theses more to the blood issue?
A lot of llmds will prescribe Cholestyramine, a bile acid sequestrant, which binds bile in the gastrointestinal tract. If you have a herx, the cholestyramine will bind to the dead toxins therefore flushing them out of the body quicker and more efficiently. Its a good tasting orange powder that comes in packets and you use it 2-3x a day inbetween abx.
Also drink a lot of water and if the pain is unbearable you might want to get a prescription for something stonger that Tylenol. I use Codeine wiith Tylenol.
To: to This has been going on for years now...it's a lower GI thing. I have seen Dr for it and had the test (you know, the one with the camera, colinoscopy (spelling is not my thing). Never have found out what is the cause of the bleeding. I seem to be able to control it by eating small amounts of food and not eating all day (it's better if I only eat at night). This past month seems to have been very hard on me. My joint pain is worse and the bleeding is back, etc. I am working on saving enough $ to get the tests that I need done for lyme. I don't think I was treated properly in 1988 when I first had lyme. It has probably been raging war on my body ever since. I can only imagine the damage it has done in there! Hope you are feeling better!
SIKESTON, Mo. -- Family, friends, former patients -- an entire
community -- are mourning the loss while celebrating the life of Dr. Ed
Masters today.
Masters, 63, died Sunday at Southeast Missouri Hospital in Cape Girardeau.
"It's a loss to the world," said Paul Walters of Alton, Ill., a former
patient of Masters making the three-hour drive for today's visitation.
"He was an amazing person."
Rusty Newton of Advance, Masters' sister, described Masters as "a renowned and beloved family physician."
Photo:semissourian.com
Dr. Edwin Masters
"He loved being a doctor," she said. "Solving complicated medical cases was the challenge he relished most."
One of the biggest challenges Masters faced was the one he is best remembered for.
"He spent the better part of his medical career researching, documenting and treating tick-borne diseases and was internationally known for his work with Lyme disease," Newton said.
Due to his extensive research on Lyme-like diseases and a critical discovery, STARI (Southern tick-associated rash illness) is also known today as Masters disease.
"It should be called Masters disease," said Walters, who is among the many treated by Masters for Lyme-like diseases. "Ed Masters is the one who isolated it."
Doctors from all over the country would refer their patients to Masters advising he was "the one man who could help them," Newton said. "People would call to try to get an appointment to see him and couldn't get in."
Some managed to track Newton down at her former home in Kansas City and
plead with her to ask her brother to schedule an appointment for them.
"And he did on many, many occasions," she said.
Newton recalled how when some patients were too weak to make the drive down here, Masters would drive to ...
LymeBlog News
Lexington, KY USA
By LymeBlog News Staff
Washington, D.C., Wednesday, June 25, 2009--Twelve
members of the board of the National Capital Lyme and Tick-borne
Disease Association met with Dr. Ben Beard from the Centers for Disease
Control's (CDC) Ft. Collins office and Sarah Wiley from the CDC's
Atlanta office to exchange information and discuss their concerns
related to Lyme and tick-borne diseases. A planned three-hour meeting
extended to nearly four.
The National Capital Lyme and Tick-Borne Disease Association strives to improve the quality of life for people suffering from Lyme and other Tick-Borne illnesses by offering support and disseminating information that educates and empowers patients, families, healthcare workers, and the community at large about these diseases.
Dr. Beard began the meeting with a presentation which included an
overview of the organizational structure of the CDC and many
statistical charts indicating the increasing cases of Lyme which define
the disease as an epidemic. He presented the CDC's seven-part
strategic plan for dealing with the disease, which we will make
available to you on our website next week. The presentation stretched
to nearly two hours, since many board members responded to his
invitation to ask questions during his talk.
The NatCapLyme board members then presented their concerns during the next two
hours, covering the following topics:
(1) Prevention using the Four
Poster technique
(2) CDC website links to IDSA
(3) CDC changes in
website information on Lyme testing
(4) Distribution of more and
balanced public information
(5) Problems with Lyme testing
(6) Tick
testing
(7) Misuse of the CDC case definition
(8) Consistency of use
of terms for ongoing or chronic Lyme
(9) surveillance reporting
issues
(10) The need for Lyme disease to become a high priority in
research
(11) Issues concerning the use of CDC materials in legal
cases.
NatCapLyme responded quickly to the invitation that the CDC
extended less than a month ago. The representatives of both groups
expressed thanks for the opportunity to have the useful interchange of
concerns and information.
People with Lyme: This doc about chronic Lyme disease may tick off a few folks
Under Our Skin
New York Press, New York, NY USA
By David Berke
Under Our Skin,
the Lyme disease documentary, is a tendentious film primarily
interesting to the Lyme community, but its poignancy gives the film a
deserved wider appeal.
Filmmaker Andy Abrahams Wilson follows Lyme
disease patients through months of treatment, cataloging their horrific
experiences fighting the disease. He also talks with an impressive
assemblage of doctors and advocates, including the doctor who
discovered the disease.
Photo: Under Our Skin
Filmmaker Andy Abrahams Wilson follows Lyme disease patients through months of treatment, cataloging their horrific experiences fighting the disease.
Under Our Skin
Directed by Andy Abrahams Wilson
At IFC Center
Runtime: 103 min.
The problem with Lyme disease, and the reason why the patients Wilson
profiles are so tormented, is controversy over chronic Lyme. Some Lyme
sufferers face persistent symptoms: seizures, neurological disorders,
searing pain and a laundry list of other problems for months (or years)
on end. Some doctors, however, maintain that chronic Lyme disease is
nonexistent.
Though his film undoubtedly excoriates chronic Lyme
naysayers, Wilson interviews the opposition, allowing them to explain
their positions. Their interview clips are bookended by criticisms and
contradictions (claims of insurance company influence on their
opinions, footage of patients with Lyme conditions the doctors deny),
but the gesture is still an important one. Under our Skin would be
a more effective issue film, however, if it laid out more facts about
the disease: emphasis on the fact that short term antibiotic treatment
does work for some, a guide for how to avoid and spot ticks
and exploration of problems with alternative and long-term antibiotic
treatments for Lyme. All these would make Under Our Skin a more
medically valuable documentary and less just plain terrifying.
As
someone who suffered through months of Lyme disease, surrounded by
ineffective doctors firmly ensconced in the “chronic Lyme doesn’t
exist” camp, I don’t make these recommendations lightly. I know the
nightmare of a poorly understood illness, one without fair-minded
sources victims can consult. Under Our Skin, though it will bring vital
public attention to Lyme is, unfortunately, not that source.
MERICAN FORK -- A 19-year-old Utah man is the
latest victim of a controversial disease that, so far, has wiped away
the past four years of his life. Though symptoms are real, victims are
often misdiagnosed or labeled as pretenders.
We've visited this arena before: Toby Lee in 2003. He had
difficulty getting dressed; his hands and face would tremble. He fell
down stairs at work. Fatigue was overwhelming.
Did Lee have stiff-man's syndrome? No. Maybe early Parkinson's
disease? No. Was it the beginning of multiple sclerosis? No, again.
Photo: KSL.com
Lyme disease patient Ammon Livingston now spends roughly 80 percent of his time on this couch, too weak to move.
The final diagnosis: Lyme disease; bacteria from a tick bite triggers a
cascade of symptoms mimicking all kinds of illnesses. But is it always
real, or are some symptoms psychosomatic? The lack of understanding of
what the bacteria may do inside the body continues to make Lyme a
controversial disease.
One of the latest victims of Lyme disease is 19-year-old Ammon
Livingston. He now spends roughly 80 percent of his time on this couch.
"[I have] pain in my joints, especially in my neck and head;
what's called ‘brain fog' -- I can't remember things," Livingston said.
Like Lee was administering to himself six years ago, Livingston
gets an infusion of antibiotics four times a week. But in Livingston's
case, it's at his doctor's clinic.
Some days are good; some are bad. But most of the time, Livingston says he's tired.
"Debilitating fatigue to where most days I don't have the strength to walk to the mailbox and back," he explained.
Four years ago, Livingston had everything going for him. He played
trumpet in the American Fork High School Band and performed at
President George W. Bush's second inauguration. A scholar, an athlete,
an Eagle Scout; but when he returned from his trip back East, he came
with a fever, cold-like symptoms and a downward spiral.
Chronic fatigue syndrome, sleep apnea, orthostatic
hypertension? He too went through all the diagnoses, finally ending
with Lyme disease.
"It's infuriating to me. Finally, after four years, I get this
diagnosis," Livingston said.
Not all doctors agree. That's why Livingston's current
physician declined our interview, for fear of being ostracized by her
peers.
The antibiotics appear to be working, but how many more and how long before Livingston recovers?
"The highs get higher and the lows seem to get a little higher," he said.
A garage sale fundraiser to help pay for Livingston's medical
bills is planned for Saturday at 7 a.m. at 300 North and 100 East in
American Fork.
Ontario advocacy group promotes awareness of Lyme disease in Canada
An Ontario-based advocacy group seeking to heighten public awareness
about the prevalence of Lyme disease in Canada had cause for optimism
that its message is being heard when granted an audience this week with
Ontario’s Ministry of Health.
Waterdown resident Rob Manten, a Lyme disease patient and founding
member of the Lyme Action Group, was part of the eight-member
delegation made up of doctors, lawyers, patients and the president of
the Canadian Lyme disease Foundation, Jim Wilson. And while Manten
couldn’t predict the outcome of the meeting with Health Minister David
Caplan’s policy advisor, he was hopeful that something will be done to
improve the reliability of testing for the disease.
Caused by a bite from a bacteria-infected deer tick, Lyme disease is
known as “the great imitator” because it manifests as symptoms of
virtually all known neurological, musculoskeletal, arthritic,
gastro-intestinal, cardiac, psychiatric, and autoimmune disorders
including MS, ALS, Alzheimer’s, Parkinson’s, arthritis, fibromyalgia
and autism.
Photo: flamboroughreview.com
Waterdown resident Rob Manten shows CDC statistics on the number of Lyme disease cases in the United States.
Maintaining that “it’s the flawed testing that is the root of the
whole problem” in detecting and treating the disease in Canada, Manten
said the Canadian test for Lyme often produces false negatives – as it
did in his case. If detected early, the disease can be treated with
antibiotics. If left undiagnosed and untreated, however, it can become
chronic and difficult to treat.
Manten hopes that the meeting with the ministry official will cover
several areas of concern including accessibility to better testing,
additional training for physicians and raising public awareness of the
disease.
Also slated for discussion is the possibility that Canada’s blood
supply could be compromised because Canada is one of the few western
nations that does not currently screen its supply for Lyme.
These and other concerns of the Lyme Action Group were relayed in
January when a package of information was sent to all Ontario MPPs, the
Minister of Health, Attorney-General and Premier Dalton McGuinty.
Manten, who contracted Lyme disease five years ago but wasn’t
diagnosed until 10 months later, said he donated blood during the
interim and feels uneasy that the nation’s blood supply isn’t screened
for the disease.
Like many other Lyme patients, he suspects that the number of reported Lyme disease cases in Canada is artificially low.
With Canada sharing its border with many areas in the United States
that are clearly ...
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