-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I ordered my home copy of UOS earlier this week. I got a copy for my sister too. Can't wait until they arrive!
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Very good article!
Leeleeleeleeleelee
You will love it!!! I've seen it at least 5 times now.
Remember dear Merryland girl... Ho Ho Hopkins is home to an IDSA guideline author... Dumler.
AND the editor of the IDSA guidelines.... Auewaeter.
AND it was the Worm's home for a while too.
AND Bumsteere is all too familiar there.
AND McStupid tried to CLAIM it was his home too.... in the NEJM article... but it said Ho Ho Hopkins next to his name was located in Crofton, MD.
They (NEJM) later explained it was a "typo".
I can see that happening... a typo going from the word "NIH"... and slipping and sliding on the keyboard.... to instead printing something like- Johns Hopkins University, Crofton, MD.
HEY! It CAN HAPPEN!
Try to type NIH... slip slip slide on that keyboard... and you have Johns Hopkins Institute blah blah blah come out instead.
Wanna see the worm squirm? Or the ducks paddling down the river, full speed ahead?
Do a public viewing of the movie in good old Merryland!
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Tincup,
I would like to tell you that I think you are the cheeriest, most upbeat person ever! Not to mention educated, articulate and thoughtful.
You make me happy.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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bettyg
Unregistered
posted
copying this from support from someone who posted it there!
bettyg Honored Contributor (10K+ posts) Member # 6147
Icon 1 posted 21-03-2009 02:46 AM Profile for bettyg Send New Private Message Edit/Delete Post Reply With Quote hey guys, where are your FEEDBACK comments?
here's mine i just wrote there as 1st one to do so..
Clint, you did a remarkable job on your above editorial of UNDER OUR SKIN.
I've had chronic lyme for 39 years; 34.5 yrs. MISDIAGNOSED by 40-50 drs. UNACCEPTABLE.
For those of you who saw this wonderful lyme documentary, please take the time to email or write your federal house rep and federal senators to request they be CO-SPONSORS of HR 1179 and the senate version at this time does NOT have a new number yet.
Again, the IDSA, Infectious Disease Society, the bad infectious drs. who UNDER TREAT up to 3 weeks max of antibiotics, and you are "cured"!; have written congress house reps and senators to STOP THIS BILL again! UNACCEPTABLE!
The medical community gave almost $500,000 to NJ's house chair Frank Palone, who is chair over our TICK- BORNE DISEASES BILL! Shall we say "conflict of interest" big time!
As you learned from the film, most of us pay OUT OF POCKET for all our lyme expenses:
appointments, tests, labs, treatments, and related expenses plus OUT OF STATE expenses for gas, food, and lodging since 15-18 of our states do NOT HAVE FULL-TIME LLMDS, lyme literate mds!
Lyme/co-infection patients are discriminated against; we just want EQUAL TREATMENT like those with cancer, hiv, & AIDS.
Again, wonderful review and thanks for attending. I hope you will write more articles about lyme/co-infection disease!
Thank you.
IOWABETTYG
-------------------- Bettyg's NEWBIE PACKAGE w/TABLE OF CONTENTS!
http://tinyurl.com/Bettyg-NEWBIE-PACKAGE NOT CONSIDERED MEDICAL ADVICE! Info provided should not be used replacing your personal MD's advice. Site links are provided for EASY RESEARCH. Posts: 23453 | From Iowa, USA | Registered: Aug 2004 | IP: Logged | Report this post to a Moderator Keebler Frequent Contributor (1K+ posts) Member # 12673
Icon 1 posted 21-03-2009 03:03 AM Profile for Keebler Send New Private Message Edit/Delete Post Reply With Quote -
I would love to see PBS' Charlie Rose interview the writers/director/crew (and ILADS LLMDs). Good reviews might help that happen.
- Posts: 6461 | From Magic Forest | Registered: Jul 2007 | IP: Logged | Report this post to a Moderator Ann-OH Frequent Contributor (1K+ posts) Member # 2020
Icon 1 posted 21-03-2009 10:56 AM Profile for Ann-OH Author's Homepage Send New Private Message Edit/Delete Post Reply With Quote Mr. O'Connor is a film critic. What he wrote was not an editorial. In his position, he would not be likely to write an article about Lyme disease.
Not sure who the "bad infectious doctors" are.
The Bill HR1175 is before the House Committee on Energy and Commerce. That committee is now headed by Representative Henry Waxman. You can follow the committees actions on this website: http://energycommerce.house.gov/
I sent Clint an e-mail thanking him for his good review of the film. (We had been in contact a couple of weeks earlier and I called the film to his attention then. So I was very pleased to see his review of the film.)
Ann - OH
-------------------- www.geocities.com/ldbullseye Posts: 4687 | From Ohio | Registered: Jan 2002 | IP: Logged | Report this post to a Moderator Dekrator48 LymeNet Contributor Member # 18239
Icon 1 posted 21-03-2009 11:13 AM Profile for Dekrator48 Send New Private Message Edit/Delete Post Reply With Quote Thanks bettyg, for pointing out that there is a place to make comments. I did not see it when I was on the site the first time.
I went back and left these comments:
Thank you, Mr O'Conner, for writing such a truthful and straight forward review of the film, ``Under Our Skin''.
It seems that the conflict here really comes down to money. Insurance co's don't want to pay for our long term treatment. Likewise, physicans want to get reimbursed by insurance co's and also work for them sometimes.
Ironically, insurance co's ARE paying in lots of other ways. When we are misdiagnosed with other chronic illnesses that have ``no known cause'', insurance co's pay for life.
If physicians were educated and insurance co's paid for proper long term treatment to begin with, they would save a huge amount of money in the end.
As a Registered Nurse and a sufferer of Lyme disease, I can tell you that the public and the medical community in general is not aware of the epidemic of borrelia burgdorferi infection (lyme disease).
There are very few physicians who are properly educated about Lyme disease.
For that very reason, I was given a fibromyalgia diagnosis for 21 years. I always knew that the cause of my illness was likely an infectious one.
It was only through my own research and determination that I was finally diagnosed with Lyme disease after 21 years. Now that is what I call CHRONIC LYME!!
My case is not unique. Many Dr's will tell you that first you will see a bullseye rash and then the patient will be treated with a few weeks of antibiotics and be cured!
I never had a bullseye rash and I don't remember a tick bite. 50% of people do not remember either one.
When I had the first sign of being sick....a flu-like illness in the late summer/early fall , I was told I had a virus.
Later when I developed muscle pain, fatigue and insomnia, I was told I had fibromyalgia, for which the cause is unknown. Patients given that label can expect nothing further, since Dr's will not search for the cause of an illness where the cause is "unknown".
Most physicians cannot see the big picture. I personally know at least 8 other people whom I believe are also infected with Borrelia burgdorferi, the bacterial spirochete that causes Lyme disease.
Some of the diagnoses commonly given to patients when they are really suffering from a Borrelia burgdorferi infection are: MS, fibromyalgia, chronic fatigue syndrome, Parkinson's disease, ALS, Rheumatoid arthritis, autism, ADHD, Alszheimer's, bipolar disorder and other psychiatric disorders, and others. Lyme has been called the "New Great Imitator".
First, many people who are bitten by a tick are never diagnosed with Lyme right away and never given any antibiotics.
Second, the patients who are given a few weeks of antibiotics are declared cured. Later when they develop neuromuscular and other systemic symptoms, they are told that their symptoms are unrelated to Lyme.
Third, these same patients grow sicker and sicker and are forced to go from Dr to Dr looking for someone with enough knowledge to help them. Usually they do not get the help they need. People die from Lyme disease because it is not recognized, diagnosed or properly treated.
Patients who continue to have symptoms are told by Dr's who are unable to recognize the Borrelia infection, that "it is all in their head" and they need a psychiatrist.
Fourth, testing for Lyme is poor and usually very innacurate.
Almost all Dr's think that if a Lyme screen/lyme titer/ELISA, is negative, a patient does not have lyme. The truth is that a lyme titer/screen misses at least 50% of cases of lyme disease.
If a Dr orders a western blot for lyme, most likely the lab will not test for all bands, which is a necessity. They swear by results that are inadequate and flawed.
Also, most labs, when developing their testing criteria, only included a few species of borrelia bacteria.
Therefore, when those labs run western blots, they will miss many cases of lyme that are caused by strains of Borrelia that are not included in that labs testing methods.
Igenex lab in CA is a reference lab specializing in testing for lyme and other tick borne illnesses. Igenex tests for and reports all bands on a western blot. They included many species of Borrelia bacteria when developing their testing methods.
There is an absolute medical travesty happening right here in our country...only no one wants to notice or admit it.
We search for years for help, and then when we finally get a correct diagnosis from a Lyme Literate physician, we have to pay out of pocket for our medical care, even when we have insurance.
Insurance companies will not recognize that chronic lyme exits because they do not want to pay for thousands and thousands of very ill people's care. They completely side with the IDSA Dr's who also work for insurance co's and drug co's.
If we want any hope of recovery, we have no choice but to pay for our care out of pocket.
Can you ever imagine this happening to cancer patients or AIDS patients?
The IDSA says that chronic lyme does not exist. That is absolutely ridiculous.
Ask the tens of thousands of chronic lyme patients and the ILADS physicians who are the real experts, if chronic lyme exists. The answer is an absolute YES!!! We require long term treatment to have a chance of recovering after so many years.
It is ludicrious to think that a bacterial illness that was undiagnosed for years or very undertreated cannot be chronic.
To complicate our illness, many patients with Borrelia infection also are infected with one or more other tick-borne illnesses that the same tick transmitted.
Bartonella, babesia, ehrlichia and anaplasma are some common tick-borne illnesses.
Most physicians cannot even recognize a Borrelia infection, let alone these complicating illnesses.
There are many, many people in the US who have only been diagnosed with individual symptoms such as migraines, trigeminal neuralgia, chronic sinus infections, irritable bladder, bell's palsy, arthralgia, insomnia, etc who are exhibiting symptoms of lyme disease and other tick-borne illnesses.
They are being overlooked and will never get well because the cause of their illness is never recognized.
The public and the entire medical community needs a huge amount of education about lyme disease and other tick-borne illnesses.
Please do everything you can to promote the film ``Under Our Skin'', so that awareness of Lyme disease spreads across our nation.
Mr. O'Conner, if you do some research, starting with the ilads website and other Lyme disease organizations, you could also write an article and help blow the lid off of the huge medical travesty that is occurring in our country.
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,
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