Topic: Not "CDC" positive and need treatment? Try this...
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hopefully it will help others too?
This is an excerpt from a letter I just wrote for a Lyme patient to help them get treatment for their family members.
If you think any of it could help you... please feel free to use it.... any or all of it.
(Thanks to Cheryl at Lyme Info for providing these sites below with information proving our case. Way to go Cheryl!)
Lyme disease, as you know, is caused by a spirochetal bacterium that is difficult to eradicate once it has spread through the tissues and various organs of the body. According to the Centers for Disease Control, Lyme disease (Bb) can cause severe neurological damage, arthritis, cardiac problems and many other debilitating symptoms. Often treatment with antibiotics does not completely eliminate the bacteria and repeated treatment is necessary. Many patients, in order to keep from deteriorating and in order to survive, have been forced to remain on continuous antibiotic treatment for these infectious chronic diseases. If treatment is stopped before all of the bacteria have been eliminated, the patient will relapse. Unfortunately, many patients were misdiagnosed originally and due to lack of proper treatment, their infections have become severe and disabling. Some patients require open-ended treatment with combinations of various antibiotics to keep from deteriorating further. Progress during treatment is often slow and can cause a person to become worse before they feel better (Jarisch-Herxheimer reactions), however, long term treatment has been successful in the majority of cases.
... Lyme disease can cause multiple symptoms that fluctuate and can become worse if antibiotic therapy is discontinued or not initiated. This has been confirmed by the FDA, International Lyme and Associated Diseases Society, Lyme Disease Association, and the Centers for Disease Control, as well as Yale, Johns Hopkins, the Mayo Clinic and other well known medical centers...
There are over 20,000 published medical abstracts and articles documenting the variety of symptoms that may present in patients infected with tick borne diseases. Organizations, such as, the Centers for Disease Control, International Lyme and Associated Disease Society (ILADS), Lyme Disease Association, and the Lyme Disease Foundation agree Lyme and tick borne diseases are complicated infections in need of prompt and proper treatment. To deny treatment to someone suffering from an infectious illness is not only inhumane, it is dangerous to their health and well being.
Lyme disease testing misses many patients who are infected and a negative test does not rule out Lyme disease. ILADS recently published guidelines (2004) that state the current testing procedures can miss ``up to 90 percent'' of the people who have Lyme disease. The FDA also warned physicians not to depend on test results as being conclusive and stated in a 1998 meeting,
``The diagnosis [Lyme] rests on clinical grounds. I can't emphasize this enough. Serology again is often negative early on in infection, and furthermore, patients treated for early Lyme disease can relapse and still be seronegative. This is work that has come out of Stonybrook and relatively recently published wherein, in a trial for early Lyme disease, patients who were seronegative despite some very convincing evidence of objective signs and symptoms for Lyme disease initially got better by treatment and then went on to relapse, and remained seronegative.''
The same FDA experts and consultants have also stated if a patient is NOT treated the...
``EM [rash] will fade, usually by four weeks, often sooner, and as the infection spreads, there can be secondary EM lesions, neurologic abnormalities, lymphocytic meningitis,carditis, and/or rarely acute arthritis. Going on to late Lyme disease, what we have seen in patients is a chronic meningitis or perhaps more commonly meningoencephalitis, encephalopathy, peripheral neuropathy, migratory polyarthritis, and/or acrodermatitis, which I believe the acrodermatitis being more common in Europe than in the United States.''
Due to the overwhelming number of research papers proving these statements, I would advise anyone who considers denying antibiotic treatment to a Lyme patient, first, be aware of the growing number of legal cases being brought before the courts on behalf of patients who were disabled due to improper diagnosis and/or improper treatment. In a recent, highly publicized legal case, a young child who was refused treatment for Lyme was awarded a judgment of over one million dollars as compensation for the damages caused by those in charge of his care who refused to treat him.
I am attaching the following documents that support continuing treatment for patients with Lyme and tick borne diseases who may test negative, yet continue to have active symptoms. If, after reviewing these documents, you continue to have any questions as to the proper route to take regarding XXXXXX, may I suggest contacting ILADS, the Lyme Disease Association, or myself for more detailed information.
Enclosed in this packet are the following documents:
From Lyme Info:
Persistence File: These abstracts show that Lyme disease can persist or relapse despite antibiotic therapy. 12 pages. Last modified: September 2003
Symptoms: Lyme disease is a multi-systemic infection, affecting multiple parts of the body and causing extensive symptoms, as demonstrated by these abstracts. This file now includes a table of contents. 47 pages. Last modified: February 2004
Symptoms Supplement: Abstracts on additional topics related to Lyme disease, such as tick bites, co-infections, and the immune response to Lyme disease. 8 pages. December 2003
Seronegativity: These abstracts demonstrate that the tests for Lyme disease and other spirochetal infections can be falsely negative. 17 pages. Last modified: September 2003
Cystic Form of Bb: An Introduction: These abstracts shed light on how Borrelia burgdorferi (Bb) is able to survive antibiotic therapy, and on a primary mechanism underlying post-treatment clinical relapses. They document the ability of Bb to change from a spirochete-form to a "cystic" or coccoid form in response to adverse environmental conditions. The cystic forms can later regenerate spirochetes.
Again, if you have any questions, please feel free to contact me. I will do whatever I can to assist you in your research and provide any additional information required to assure XXXXX has the best care possible.
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
Hi T~cup....tea cup?....how is my good ole moonshine gal?
I think tea cup is so suitable...kind of like the difference of drinkin beer out of a can versus in an iced glass....
You are definatly CLASSY GLASSY...
In a recent, highly publicized legal case, a young child who was refused treatment for Lyme was awarded a judgment of over one million dollars as compensation for the damages caused by those in charge of his care who refused to treat him.
Can you forward me this case please??? I could use it about now!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Bumble brains...
How ya BEAN ya sweet thang?
Here it is in red, white, and blue.. just for you... and anyone else who cares to see it.
Actually the award from the jury was over THREE MILLION dollars... but due to "caps" on the amount that could be awarded... the judge had to stick by those limits.
Hope it helps...
Hey and howdy to my Lishka...
Jury awards $1.7 million to Cecil teen [Cecil Whig, Cecil, MD]
By Carl Hamilton, Whig Staff Writer
December 20, 2000 ELKTON - A civil jury awarded more than $1.7 million Monday to a Port Deposit teen who suffers long-term health problems because local physicians failed to diagnose his Lyme disease. This is believed to be the highest award of damages in Cecil County history, according to veteran lawyers and court officials.
The six-member jury deliberated nearly eight hours before concluding that Chesapeake Family Practice Group on High Street in Elkton breached the standard of medical care when treating Aaron Murray. That breach, according to the jury, directly resulted in Murray's physical problems, including his IQ reportedly dropping as much as 29 points.
Murray was 14 when he became a patient at Chesapeake Family Practice Group in 1995. He is now 18. The jury also decided that Dr. Joseph K. Weidner Jr. breached the standard of care. However, his breach didn't directly lead to Murray's physical problems. Weidner still practices medicine at Chesapeake Family Practice Group. In addition, the jury exonerated the remaining defendant, Dr. Leila A. Kirdani, concluding that she didn't breach the standard of care. Kirdani now practices medicine in Buffalo, N.Y. The jury originally awarded a total of $3.2 million, but Circuit Court Judge O. Robert Lidums reduced damages on one count because it exceeded a state cap. Under a count addressing the plaintiffs' pain and suffering, the jury wanted to award Murray and his mother, Gail Johnson, 41, $2 million. The cap is $515,000, however. It awarded more than $1.2 million to cover Murray's loss of future earnings. And the jury awarded $64,000 to cover past medical expenses. The defendants' attorney, Robert C. Morgan of Baltimore County, could not be reached Tuesday for comment.
Ira C. Cooke of Towson, Md., who represented the plaintiffs, believes this verdict will caution other doctors. "I think this is an important case because it puts the medical profession on notice that anything less than top-flight medical care will not be tolerated in Cecil County,'' Cooke said. Cooke handled this case with Elkton-based lawyer Douglas R. Cain. In October, Cain represented a local plaintiff who was awarded more than $1.6 million in damages. Until this verdict, that was the highest amount of damages awarded in this county. The jury in this most recent case returned its verdict after a two-week trial.
Chesapeake Family Practice Group failed to offer its physicians training or directives relating to the prevention and detection of Lyme disease, the plaintiffs maintained. Cecil County is a high-risk area for the disease. According to the lawsuit, Johnson and her son sought medical attention at Chesapeake Family Practice Group on April 1, 1996 because the teen exhibited numerous symptoms indicative of Lyme disease.
The teen had "every single'' symptom, including fatigue, a rash, swollen glands, nausea, flu-like symptoms and aches and pains in the joints, Cooke charged. But Murray's condition went undiagnosed despite several more visits to the medical practice, Cooke said. The defendants didn't even conduct the simplest of diagnostic tests - a blood test, he added. Staff doctors diagnosed Lyme disease after Murray collapsed with seizures in a hospital emergency room in August 1996.
Hospital doctors relied on blood test results. The defendants countered, however, that Murray had Lyme disease only a few weeks before collapsing at the hospital - not several months before the incident. Approximately six weeks before the episode, the teen discovered a rash that could have been a telltale of Lyme disease, according to Morgan. Yet, Murray and his mother didn't seek medical attention at Chesapeake Family Practice Group between the time of his rash discovery and his collapse, Morgan maintained. The plaintiffs contended that there was an unnecessary delay in treatment and that it caused Murray's IQ to drop significantly.
His IQ was measured at 115 in 1995, they reported. Two recent tests registered Murray's IQ at 86, and a third placed it at 103, according to testimony.
His lawyers claimed Murray was unable to complete the ninth grade as a result. Last week, Murray provided emotional testimony about the various abilities he has lost in the wake of his prolonged bout with Lyme disease. If detected early enough, according to his attorneys, Lyme disease can be easily treated without lingering health problems.
The teen broke down on the witness stand, reducing jurors, the judge, his lawyers and others in the courtroom to tears. During his closing statement last Friday, Cain reminded jurors that Johnson made 72 unanswered phone calls to Chesapeake Family Practice Group in several months.
She was concerned about her son's worsening condition, Cain said. Weidner called Johnson a "hysterical mom'' while talking with the woman about her son's case, the mother testified. Morgan didn't dispute that Murray visited the medical practice numerous times since January 1995, when his family became clients.
He also didn't deny that numerous phone calls were made on Murray's behalf. But many of those phone calls and visits related exclusively to the teen's asthma and other ailments, such as sinus infections and stomach problems, Morgan said. Morgan called the plaintiffs' case a "fishing expedition,'' and he accused their lawyers of preying on the emotions of jurors.
"Clearly, the medical care rendered in this case met the standard of care,'' Morgan said in his opening statement.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Question....
Why is it you are so stuck on having Rocephin.. and only Rocephin?
You were offered meds that have helped thousands of others in the past... and refused them.
In some situations if we can't eat Prime Rib... we have to settle for a hot dog. If we are truely hungry enough... that will get us by and help us.
Maybe a change of perspective would get you the help needed and get you well enough that you can push for other meds later?
I don't like seeing you be so miserable...
It seems you can't get out of the political games/fighting/complaining long enough to get yourself some serious help and focus on you.. not the rest of the worlds problems.
And by the way... many many experienced Lyme doctors are no longer using Rocephin because it isn't the "cure all"... it is expensive... and other oral drugs work as well or better.
For example.. I had three go arounds with Rocephin. The only thing it did was make me worse and delay much better treatment.
And ate me broke.
Try something else.. chances are you may like it... it may work.. and you will feel MUCH better.
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
[QUOTE]Originally posted by Raskilnokov: 2) Besides, a pharmacist warned me about overseas pharmaceuticals--that there are lawsuits involving elderly getting crazy stuff in their estrogen tablets from Asia. If desperate however, may (have) taken the risk. But the amox. was not killing the 'chetes.
I have been ordering my meds from www.realfastdrugstore.com for 3+ years now and they are delivered to me in the pharmacuticals sealed bottles. It is cheap, reliable and they are real.
NIH states Rocephin provides complete recovery in most Lyme patients. That is the best recommendation I've found. Whether it is true or not have no way of knowing. Yet coincidentally that is what Dan from Chico states cured him. (Not initially, but after a stronger dose.)
Well, seriously, thousands of us posters don't believe everything the NIH has coming down the pike. Me getting IV Rocephin, before I saw and LLMD who would NOT have put me on it, has made my treatment harder and even set me back months if not years. Rocephin, has now been proved, to make the spirochete bacteria go into the cyst form and just hid out until it is "safe" for them to return to the spirochete.
"Maybe a change of perspective would get you the help needed and get you well enough that you can push for other meds later?":
Have no idea what that means. Changed perspective across U.S.---seven states have denied me ANY treatment whatsoever. And you well know there are no low-income LLMD's.
"It seems you can't get out of the political games/fighting/complaining long enough to get yourself some serious help and focus on you.. not the rest of the worlds problems.": I agree with tincup on this one.
Exactly where is the help? Exactly. The common advice here is through LLMD's--none will take low-income. These wordly problems have a direct effect on my present situation--bringing light to them here betters the corrupt media. Prehaps if you stayed in one place long enough, you'll be able to find the help you so desparately seem to need.
"And by the way... many many experienced Lyme doctors are no longer using Rocephin because it isn't the "cure all"... it is expensive... and other oral drugs work as well or better.": True, true, true, proven to be true over and over again and again.
Rosemary
[This message has been edited by rosesisland2000 (edited 29 July 2004).]
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