posted
I simply do not understand. Why are there doctors so completly opposed to LLMDs and their work?
No one is attacking Doctors trying new ways to treat cancer. What is going on?
I understand the controversy, I just dont understand why there even is one, and why people are so opposed to this that they will fight it and argue.
There must be a reason. Does anyone know why? I dont beleive the 'they were proven wrong once so they are being ****y because they got their feelings hurt' theory. There just HAS TO be a bigger reason.
posted
Follow the money. Insurance companies do not want to pay for it. They've signed up these drs to be on their side. I'm sure there is money changing hands that we don't know about.
Then there's the problem with the medical books. Who's in charge of changing what's in the books?? I think a change in treatment of ANYTHING takes a long time.
Then there's the problem of "bacterial resistance"... I think they are worried that if everyone with Lyme symptoms took abx, there would be a bigger problem with resistance.
I DON'T buy that, but that's one thing they throw out there constantly.
posted
I don't understand either. I know money has a lot to do with everything. But, money is only a material object. To me, it isn't anywhere as close to a person's life. I hate that it has to be that way.
I don't know, but I am sure treating cancer long-term isn't cheap either. Lyme isn't the only long-term treatment out there.
I don't want to start anything or nothing I am just saying what I feel. And I don't mean any offense to anyone.
I want to be doctor, as some of you may know. If it didn't pay anything at all, I would still do it. I don't think anything should be about the money. I wish the world could be different in that aspect.
Insurance companies care more about money than helping people keep their lives. It just doesn't seem right to me. Money isn't everything, but greedy people seem to think it is.
Money wouldn't mean anything if you didn't have life. But, they don't care or think about that. Everything is a competition.
In my opinion it shouldn't be that way. It just doesn't seem right to pay for treatment for everything, but lyme.
One day when I do become a doctor, I will make it my personal goal to help all those who can't otherwise be helped regardless of money or anything else. Life is more important. I believe in Lyme and I don't understand why so many others can't.
Of course if they had it, it would be a different story!
Well, I guess that's my whole opinion. I also wrote whatever came to mind so I haven't read over this or put any thought into what I put. And I don't mean any disrespect to anyone. I was just speaking my mind.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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heiwalove
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posted
(i don't want to derail the thread, but wilsongal - go to your nearest movie theatre and see 'Sicko,' michael moore's new documentary. it IS really horrible, i totally agree with you, but in this country health and medicine are driven by profit. people's lives matter little, if at all.)
posted
(I understand that they have to have a profit somehow, I just wish it was in a different way. It shouldn't place people's lives at risk. I guess it doesn't matter life isn't fair as they say. As much as I wish I could change that I can't so it continues to float around in my head.)
As to the controversy, maybe they attack doctors because they are scared. I mean, I guess that would put insurance companies at risk of actually having to do something.
It's weird how they attack LLMDs, but not others. Lyme is a real thing and it is a known disease, it's proven to be real, right? So, it is just like anything else that would require long-term care. What makes it different?
Hmmm...I guess it's a touchy subject. I don't know. Nothing is fair these days so...
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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bettyg
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posted
also follow the GRAND BIG BUCKS! at least 4 of the 14 of the IDSA mds who wrote those ridiculous NEW LYME GUIDELINS effective 10-06 are getting many grants for their "lyme" work which has NOTHING to do with CHRONIC LYME that doesn't exist in their minds!
then their studies take 5-20 years!! I believe sharpiro has had one going at least 15 years with NO RESULTS TO DATE; give me a break!!
none of our LLMDS are getting any grants to do research for long-term antibiotics, etc!!
i've said many times here; there are BRILLIANT SCIENTIFIC MINDS ON BOTH SIDES; let's UNITE THEM AS ONE instead of what IDSA is doing to ILADS and most importantly to us, CHRONIC LYMIES .... screwing us royally!
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posted
And what about a discussion in the current issue of the Yankee Magazine(www.YankeeMagazine.com), with a featured article on Lyme, "Trouble in Paradise", about a possible biowarfare origin to this disease?
Posts: 13116 | From San Francisco | Registered: May 2006
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Geneal
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posted
I also believe that lack of awareness/education re: Lyme disease is part of the problem.
I whole heartedly agree with the money trail.
However, how much time is devoted in medical school or training on Lyme disease.
CDC reporting being misinterpreted as diagnositc standards.
General lack of awareness that Lyme is everywhere, not just in the northeast.
Also consider the possiblilty of these ducks trying to save their own behinds.
Don't acknowlege Lyme, don't treat Lyme equals not being targeted.
I also forgot the egocentricity of a great deal of MD's.....
How dare any of us question their diagnosis.
I have two more neighbors who just made appts. with my LLMD yesterday.
One had a bulls-eye rash about 3 months ago and his wife has tons of symptoms too.
If they test positive, that would make 10 out of 11 of us with Lyme in a quarter mile area.
Is anybody calling us???? Anybody curious as to why statistically that is impossible
Given the 2% probability of ticks in our area with Lyme disease?
Anybody educating the public (besides us) re: Lyme disease?
I could go on and on. (Unfortunately!)
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CaliforniaLyme
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posted
It is money but it is also compassion.
Yes, yes, yes.
There is a dark side to chronic Lyme treatment.
I believe the two pepole who personify the problem of chronic Lyme are Glenn Edward Killion and Geri Teitelbaum Fosseen.
Glenn Edward Killion never tested positive, got repeat negtaives including negative spinals, yet HE HAD LYME DISEASE- and died of it.
I have written up his story- I have also written up geris- in a much longer piece in which the REST of the article is very very pro chronic Lyme treatment (context!). BUT for the IDSA I let Geri personify their position, which is the last thing she would have ever wanted to do because she was a devoted Lyme activist- like me- like many of us- except for one difference- my disease began, indisputably, with tick bite and rash (and so did Glenn Killions btw)- and hers- hers did not-
Geri Teitelbaum Fosseen, for those who remember her, died from treatment complications, an infected IV catheter.
Here is a quote from the other article I wrote -(please don't copy, it is copyrighted and unpublished!!!)
Geri Teitelbaum Fosseen was handed over to the enemy.
And she didn't die from Lyme or even have it, they say.
Her email online was livingwithlyme at rocket mail. She was a fierce Lyme warrior, an activist through and through, in, of all places, Iowa. Ironically, shortly before she died she posted this:
(italics) The drugs I was counting on to save my life are making me sick and could kill me. If I can't have the abx and get well, could someone tell me why the hell I should care if they could kill me? At least it would be faster. (end italics)
When she died, her family had her autopsied, the results of which ended up published under the title: `Death from Inappropriate Therapy for Lyme Disease`. Not only did the article highlight her treatment complication death from a candida thrombus blocking her catheter, but it revealed that she did not have Lyme disease.
Geri Teitelbaum Fosseen is the opposite of Glenn Edward Killion. Before their bodily tissue was examined, when they were alive, both believed they had Lyme disease. Both had been diagnosed and both were being treated with IV antibiotics. But Glenn, blood and spinal negative, had it, and Geri, with a positive blood PCR from the BBI lab in Connecticut, didn't.
This is why the government hates Lyme disease and loves the experts who claim to have simple answers.
Because there are no simple answers.
It is a nightmare through and through.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
p.s. And I don't mean to say STEERE and WORMSER and SIGAL have compassion- THEY don't- but the man others doctors who have heard the geri argument and who HAVEN't been exposed to Glenn Edward Killion- them- I belive many of them are operating from love for the fellows, from wanting to keep people they all see like Geri-
because they do not know Glenn!!!
So ignorance would be an answer there too!!!!
Money, compassion- and ignorance. Steere & all are just the first answer!!!!!!!!!!!!!!!!!!!!!!!
They know the truth, the whole truth, but so help me god the whole truth includes people like that young man who was treated for Lyme but whose doctor had missed leukemia- the CDC cites his case to LLMDs justifying their treatment- and Geri Fosseen. They see corpses of people dead from IV treatment, because IV has risk, and people do die from infected catheters, and they cannot, do not know how many Glenns are out there, how many people with Lyme who are negative. So they go with what is simple.
Yes, the truth is my 9 months of IV SAVED me, but it is also true that I risked my life for that treatment, that I could have died from it, and in fact, when the catheter broke off in my arm, I almost DID!!! BUT it was worth it, it was my only CHANCE at life- yet there are people doing IV who are not as bad as I was-
So there *IS* a genuine concern for peoples lives on the other side- and the evil ones- Steere & Company- USE that to their advantage when dealing with these people and the IDSA-
they highlight Geri
and ignore Glenn as if he never existed- and academically- documented??? He DOESN'T!!!!
he has never been written up in a peer reviewed journal. Doc Duray NEVER submitted his case to any paper. In the medical world, Glenn Edward Killion does not exist.
But we know.
We know.
And sooner or later he or someone like him will be written up- and someone like me- if our doctors can get it goether to do that while under the avalanche of desperate patients-
I hope!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
My personal opinion is all of the above. The face of modern medicine would change completely, medical schools would be empty IF the "cure" was found.
Look at how many diseases lyme mimics for the answer.
quote:Originally posted by meg: My personal opinion is all of the above. The face of modern medicine would change completely, medical schools would be empty IF the "cure" was found.
Look at how many diseases lyme mimics for the answer.
Very true!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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This bothers me deeply literally every day. I am SO upset about this that I can't Stand it!
1. I am going to try to start a fund for those with lyme who can not afford meds because they are too sick to work. I am young (20) and both of my parents work. The meds are too expensive for us, but I am so much more lucky than so many out there. I want to make sure those less fortunate might actually have a chance of getting better.
2. This very nice girl who i met on Lymenet, turns out lives minuets away from my house in FL. We are going to call all the news stations and bring attention to Lyme in FL.
3. I am going to contact News papers and news stations and inform them how in FL and Alabama bloodbanks do not test for Lyme Disease or other tickborn illness. Before I knew I had lyme, I donated blood. It went to 2 different people, one that has/had cancer. This is as big as AIDS/ HIV! IT can kill just like AIDS. WE need to scare the public so they start demanding more accurate and cheaper tests. So they demand more research to be done. millions and millions of dollars goes to AIDs research. We need research! We arnt getting anything here! There might be a cure out there somewhere, but with out research we are only forced to take abx that have not even been reseached themeslves.
I know I am going to be fighting the rest of my life for this.
I simply can not understand why I even have to! People know all about cancer, but not about lyme. ANYONE AND AGE CAN GET LYME. I know 4 times as many people with Lyme (not people i met due to having lyme myself aka: lymenet) than I know people with cancer or people who even had cancer.
Something NEEDS to be done! This is Sick! I am just SO SO SO upset!
oh and Does anyone know when "Under Our Skin" is released>? I can't wait to see it!
just don
Frequent Contributor (1K+ posts)
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posted
Thanks for all the posts,,,they were GREAT!!!
Betty's point about grants for lyme research has me wondering(and we ALL know how dangerous thinking is for ME)
What I would like to know,,,and am quite curious about NOW. How many of these huge financial grants for research are there for IDSA doctors right now and in the past??? Now how many active and ongoing grants are in the hands of ILLADS docs???
I guess the question remains,,,who is in charge of these grants and who decides who gets the money???dangerous thinking--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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just don
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posted
Nudder question for Sarah,,,or anybody else that MIGHT know???
How did the positively say or determine that that lady Gerri,,,from Iowa didnt have lyme at all anyway??? What kind of tests or convoluted results did they make sure THAT outcome was determined???
IF the ducks that knows we dont have lyme here,,,knows how to goof up the draw or whatever to make SURE the test comes back negative,,,whats to say the same doesnt happen in autopsy???
Please excuse me asking this---But whats the difference between testing a live person and a dead person?? Are the tests 110% reliable on a dead person vs. 60% reliable on a live person??
Unless I am given a higher education quite convincingly,,,here,,, I am believing we are being hoodwinked into that conclusion with no facts,,,or maybe incorrect facts.
If they cant find it in LIVE person how the heck can they find it in dead ones,,,once their mind is made up,,,who cares if they cant find it,,,it fits their agenda!!!
"IF" anybody knows,,,who was this lady seeing,,,to get her well,,, at the time of her death???(you better PM me that info)thanks--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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CaliforniaLyme
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posted
Just Don-
They did a full autopsy. Her family and her husband were satisfied with the autopsy and so was her best friend, Donna Herrell, who many of you may remember- she is the one who told me about it as I had incorrectly added Geri Fosseen to the Lyme Disease Memorial Page. Processes of disease were looked for and not found as well as blood tests- she had no evidence of Lyme degenerative processes as found in monkeys, dogs, hamsters and other laboratory Lyme dissections.
If Duray had her body, would the outcome have been different? I don't know, but the facts we have are the facts we have.
I know that in the John Hopkins autopsies that I found years ago online after hours of reading JH autopsies- there were 2 that were Lyme- and you could tell- reading them- yes- on autopsy- that they were Lyme- one was diagnsoed Lyme and the other had positive Lyme serology but diagnosed MS- but the disease processes were evident in the bodies-
In Geris- would her longterm IV have taken away all evidence of disease in her body? You could make that argument. Or not. I HAVE thought a great deal about that, Just Don, I can see how you would think that- BUT we have what we have- which is with geri, at the least, no proof of infection. With Glenn E.K., we had that!!!
Robin Patel,1,4 Karen L. Grogg,2 William D. Edwards,2 Alan J. Wright,1 and Nina M. Schwenk3
1Divisions of Infectious Diseases, 2Anatomic Pathology, 3Area General Internal Medicine, and 4Clinical Microbiology, Mayo Clinic and Foundation, Rochester, Minnesota
A 30-year-old woman died as a result of a large Candida parapsilosis septic thrombus located on the tip of a Groshong catheter. The catheter had been in place for 28 months for administration of a 27 month course of intravenous cefotaxime for an unsubstantiated diagnosis of chronic Lyme disease.
Reprints or correspondence: Dr. Robin Patel, Divisions of Infectious Diseases and Clinical Microbiology, Mayo Clinic, 200 First St. SW, Rochester, MN 55905 ([email protected]).
A 30-year-old woman was admitted to the Mayo Clinic (Rochester, MN) in May 1999 following a grand mal seizure. She reported a several-week history of anorexia that was accompanied by a 23-kg weight loss over an 8-month period; 4 days before admission, she noticed twitching of her upper extremities. She appeared ill and had a blood pressure of 124/82 mm Hg, a pulse rate of 85, a temperature of 37�C, and a respiratory rate of 20. The patient was confused and unable to provide a coherent history. She was icteric and had diffuse myoclonus. Cardiac auscultation revealed a prominent pulmonic second sound. A Groshong catheter was in place. Hepatosplenomegaly was noted.
Her family provided a pertinent medical history. She had had a history of bilateral knee pain since childhood. She resided in Iowa; however, she had lived in Westchester County, New York, until the age of 16 years and in northern California for a short period thereafter. In 1994, she underwent cholecystectomy and since that time she had had chronic abdominal pain, whole body pain, an episode of Bell's palsy, occasional headaches, and periods of what were described as "mental fogginess" and "transient numbness." She also reportedly had a periodic rash that was thought to be a possible "Lyme rash." In 1996, she was evaluated by an infectious diseases physician in New York who specializes in chronic Lyme disease and was diagnosed with chronic Lyme disease. This diagnosis was made despite 6 EIAs negative for Borrelia burgdorferi, 7 Western blot assays negative or indeterminate for B. burgdorferi, and 4 PCR assays of blood, 5 PCR assays of urine, and 1 PCR assay of CSF, all negative for B. burgdorferi. MRI of the brain, as well as CSF examination, had been unremarkable in 1996. One PCR assay of blood for the ospA gene (Boston Biomedica Inc., New Britain, CT) was reportedly positive in January 1997.
She was initially treated with oral doxycycline, and then, for an 8-month period (19951996), she was treated with iv ceftriaxone; this treatment was followed by courses of oral clarithromycin and minocycline as well as parenteral penicillin G benzathine. A Groshong catheter was placed in January 1997, and a prolonged course of therapy with iv cefotaxime (up to 4 g every 8 h) was started. Intravenous doxycycline (300 mg every 12 h) was added to this therapeutic regimen in 1998. The patient reported only partial relief of her chronic symptoms during administration of this antibiotic regimen. Therapy with iv antibiotics was discontinued 1 month before evaluation at our institution, when a family physician noted abnormal results of liver function tests and thrombocytopenia. Another infectious diseases physician was consulted; this physician thought that the patient did not have chronic Lyme disease.
The patient was also being treated for chronic diffuse body pain, with several pain medications, including sustained release morphine sulfate (300 mg t.i.d.) and immediate release morphine sulfate (45 mg/d), according to the recommendations of a fourth physician in Illinois.
At our institution, laboratory tests revealed the following abnormal results: hemoglobin level, 6.3 g/dL; WBC count, 2.2 � 109 cells/L; platelet count, 16 � 109 cells/L; rare schistocytes and helmet cells on a peripheral blood smear; prothrombin time, 19.9 s; alkaline phosphatase level, 435 U/L; aspartate aminotransferase level, 131 U/L; bilirubin level, 5.2 mg/dL; and creatinine level, 6.5 mg/dL. In our laboratory, EIA was reactive for B. burgdorferi, but a Western blot assay showed only 1 66-kDa band. CSF examination was unremarkable, and PCR assay of CSF was negative for B. burgdorferi.
One day after admission, the patient reportedly became confused, and she fell, pulled and fractured her Groshong catheter, and became unresponsive. Electromechanical dissociation was diagnosed, and she died despite aggressive attempts at resuscitation. After her death, cultures of blood obtained at the time of admission yielded Candida parapsilosis.
Postmortem examination revealed acute fatal obstruction of the tricuspid valve orifice by a large infected thrombus located on the fractured tip of her Groshong catheter (figure 1). Grocott-Gomori methenaminesilver nitrate staining of microscopic sections of the thrombus revealed extensive Candida organisms (figure 2). Other significant findings at autopsy included an old Candida-infected pulmonary thromboembolus with total occlusion of the left main artery at the hilum as well as scattered old peripheral emboli bilaterally. Marked splenomegaly with reactive follicular hyperplasia and congestion were noted.
At autopsy, there was no myositis, neuritis, meningitis, vasculitis, or myocarditis suggestive of chronic Lyme disease.
Figure 1. Opened right atrium from a patient who died because of inappropriate therapy for Lyme disease. The photo shows a large infected thrombus on the fractured tip of the patient's Groshong catheter.
Figure 2. Stained section of a right atrial thrombus in a patient who died because of inappropriate therapy for Lyme disease. The photomicrograph shows extensive Candida species (Grocott-Gomori methenaminesilver nitrate stain; original magnification, � 360).
The premature death of our patient resulted from a complication of her chronic indwelling central venous catheter, which was used for prolonged iv administration of antimicrobial therapy for a disease that was not fully documented. Lyme disease is curable with antibiotic treatment, and, although resolution of true neurological complications of Lyme disease may be slow after appropriate therapy, there is no evidence that our patient ever had Lyme disease. Her chronic symptoms were nonspecific, and results of her laboratory tests were nondiagnostic and did not fit the criteria for Lyme disease [1]. Furthermore, chronic antibiotic therapy, such as that described here, is never indicated for Lyme disease, and such therapy has a significant risk of side effects. Even in cases of clear-cut Lyme disease, abnormal test results return to baseline with no measurable sequelae after appropriate treatment [2].
Lyme disease is primarily a clinical syndrome confirmed by microbiological tests [3, 4]. For our patient, the diagnosis of Lyme disease was made despite negative or indeterminate results of Western blot assays, perhaps because the presence of only 1 or 2 highly specific bands on a Western blot was considered a potential harbinger of further expansion over time [5]. We are of the opinion that acceptable diagnostic criteria for Lyme disease include the presence of multiple bands of specific molecular weight and that the serological analysis of the patient described here did not confirm a diagnosis of Lyme disease [3]. Notably, in our laboratory, a Western blot assay showed only 1 66-kDa band, thereby revealing no expansion over time. The 1 positive PCR assay is intriguing, but this finding may have been the result of DNA contamination.
It has been suggested that B. burgdorferi infection may trigger parainfectious pain or fatigue syndromes, which may persist indefinitely after eradication of the spirochete by antimicrobial therapy. In addition, fibromyalgia, chronic pain syndromes, and chronic fatigue syndrome may be incorrectly diagnosed as chronic Lyme disease [1, 6]. Patients with these disorders have disabling and generalized symptoms, including marked fatigue, severe headache, widespread musculoskeletal pain, multiple symmetrical tender points in characteristic locations, pain and stiffness in many joints, dysesthesias, paresthesias, difficulty with concentration, memory loss, and sleep disturbances; their symptoms are not relieved with antimicrobial therapy [1, 68].
Of 788 patients referred to the New England Medical Center (Boston) with a presumptive diagnosis of chronic Lyme disease, 23% had active Lyme disease, 20% had previous Lyme disease and another current illness (most commonly chronic fatigue syndrome or fibromyalgia), and 57% did not have Lyme disease (patients in this last group most commonly had fatigue or pain syndromes) [1]. In another study [7], of 209 patients referred to the Yale University Lyme Clinic (New Haven, CT) with a presumptive diagnosis of Lyme disease, 21% had active Lyme disease, 19% had previous but not active Lyme disease, and 60% had no evidence of current or previous Lyme disease. Patients with no evidence of Lyme disease had a median of 4 serological tests for Lyme disease, 7 office visits, and 42 days of antibiotic treatment for Lyme disease and were noted to have high levels of disability and distress.
Appropriate treatment of Lyme disease has been associated with complications (e.g., ceftriaxone-associated biliary complications, iv catheterassociated gram-positive and gram-negative bacterial bloodstream infections, and Clostridium difficileassociated diarrhea). Ceftriaxone-associated biliary complications have been described in patients receiving ceftriaxone therapy for unsubstantiated diagnoses of Lyme disease [9]. Inappropriate antimicrobial therapy for Lyme disease has also been associated with septic thrombophlebitis, neutropenia, serum sickness, and antibiotic-associated colitis [7]. Overall, empirical treatment with iv antibiotics of patients with nonspecific chronic fatigue or myalgia, based on positive serological results alone, has been determined to result in many more instances of antibiotic toxicity than cures of atypically symptomatic true Lyme disease [10].
The cost associated with prolonged parenteral therapy can be substantial [10]. The potential for emergence of antimicrobial-resistant bacteria exists with prolonged courses of antimicrobial therapy. Furthermore, the opportunity costs of administering prolonged courses of inappropriate parenteral antimicrobial therapy are enormous. In a study of 30 pediatric patients referred to the Lyme Disease Center at Robert Wood Johnson Medical School (New Brunswick, NJ) for evaluation of ongoing Lyme arthritis who were ultimately diagnosed with fibromyalgia, it was noted that many of the children had been subjected to unnecessary antibiotic therapy, many had missed prolonged periods of school (up to 9 months), and some required home tutoring [11].
Many patients with nonspecific complaints seek an explanation for their fatigue, pain, and mental fogginess [12]. Patients may be more willing to accept a diagnosis of chronic Lyme disease than an alternative diagnosis because Lyme disease is a "real," potentially curable disease [12]. For some patients, a diagnosis of Lyme disease may be an acceptable end to a search for an explanation of their symptoms; in such a setting, seronegativity may not be viewed as evidence against the diagnosis [12]. Incorrect physician diagnoses, as opposed to self-diagnoses, of chronic Lyme disease may contribute to depression and stress when symptoms do not abate despite protracted courses of antimicrobial therapy [7]. Survey data show that 38% of physicians would recommend >6 months of antibiotic therapy for chronic Lyme disease, and that the most frequently recommended antimicrobial agent for the treatment of chronic Lyme disease would be iv ceftriaxone [13]. The relative ease of administering prolonged courses of iv antimicrobial regimens in the current era has undoubtedly impacted this practice.
Our case report and review of the literature validate the position of the American College of Rheumatology and the Council of the Infectious Diseases Society of America [14], both of which try to discourage the use of antibiotics for a patient with a nonspecific clinical presentation who does not meet the criteria for the case definition standard accepted for Lyme disease. The use of prolonged high-dose iv antimicrobial therapy for our patient's chronic symptoms of mental fogginess, poor memory, chronic fatigue, and body numbness and pain was, in our opinion, unwarranted and ultimately led to her death.
References
1. Steere AC, Taylor E, McHugh GL, Logigian EL. The overdiagnosis of Lyme disease. JAMA 1993; 269:18126. First citation in article | PubMed
2. Seltzer EG, Gerber MA, Cartter ML, Freudigman K, Shapiro ED. Long-term outcomes of persons with Lyme disease. JAMA 2000; 283:60916. First citation in article | PubMed
3. Tugwell P, Dennis DT, Weinstein A, et al. Laboratory evaluation in the diagnosis of Lyme disease. Ann Intern Med 1997; 127:110923. First citation in article | PubMed
4. American College of Physicians. Guidelines for laboratory evaluation in the diagnosis of Lyme disease. Ann Intern Med 1997; 127:11068. First citation in article | PubMed
5. Liegner KB, Kochevar J. Guidelines for the clinical diagnosis of Lyme disease. Ann Intern Med 1998; 129:4223. First citation in article | PubMed
6. Hsu VM, Patella SJ, Sigal LH. "Chronic Lyme disease" as the incorrect diagnosis in patients with fibromyalgia. Arthritis Rheum 1993; 36:1493500. First citation in article | PubMed
7. Reid MC, Schoen RT, Evans J, Rosenberg JC, Horwitz RI. The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study. Ann Intern Med 1998; 128:35462. First citation in article | PubMed
8. Dinerman H, Steere AC. Lyme disease associated with fibromyalgia. Ann Intern Med 1992; 117:2815. First citation in article | PubMed
9. Ettestad PJ, Campbell GL, Welbel SF, et al. Biliary complications in the treatment of unsubstantiated Lyme disease. J Infect Dis 1995; 171:35661. First citation in article | PubMed
10. Lightfoot RW Jr, Luft BJ, Rahn DW, et al. Empiric parenteral antibiotic treatment of patients with fibromyalgia and fatigue and a positive serologic result for Lyme disease: a cost-effectiveness analysis. Ann Intern Med 1993; 119:5039. First citation in article | PubMed
11. Sigal LH, Patella SJ. Lyme arthritis as the incorrect diagnosis in pediatric and adolescent fibromyalgia. Pediatrics 1992; 90:5238. First citation in article | PubMed
12. Sigal LH. The Lyme disease controversy: social and financial costs of misdiagnosis and mismanagement. Arch Intern Med 1996; 156:1493500. First citation in article | PubMed
13. Ziska MH, Donta ST, Demarest FC. Physician preferences in the diagnosis and treatment of Lyme disease in the United States. Infection 1996; 24:1826. First citation in article | PubMed
14. American College of Rheumatology and the Council of the Infectious Diseases Society of America. Appropriateness of parenteral antibiotic treatment for patients with presumed Lyme disease. Ann Intern Med 1993; 119:518. First citation in article | PubMed
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
Lyme Evident in Human Autopsy
This was from John Hopkins old autopsy database, I combed through it when it was still open to the public, autopsy after autopsy- for hours day after day- to find these two folks-
the following is a Lyme death evident in autopsy and the one after as well in my opinion although the second one was offcially MS- but with positive Lyme serology
but in both you can see disease processes consistent with Lyme disease regardless of cause of death or serology- which was not evident in geri- again- was it because she was treated? you can argue that- but there is no proof- and all tested blood and tissue was negative.
I have no doubt there are more Geris out there- BUT THERE ARE ALSO MANY GLENN EDWARD KILLIONS!!! many people who test negative-
personally I think there are more of the latter than the former- but we have to prove that-
we need to have the science published to support us-
the IDSA puts out a false, distorted view of Lyme in many ways but our doctors do not publish the way I wish they would- but htat is because they are not academics- they are clinicians bless them!!! and they are all overwhelmed with patients-
still, some publish- and more are!!! Doc S, Doc B, Doc M, many are beginning to publish more & more- that is what we need-
we WILL win this- with science- and the science is there-
but reality is reality-
people like GERI DO exist- and people like GLENN do, too- this is why it is so confusing and why the CDC loves the simple answers the IDSA gives them-
I wish Duray would publish more- He knows- what our docs know-
Case No:26. Autopsy No.: #46758 Age(decades): 70 Sex: F Decade of Autopsy: 1990 Key Number: 810547
appendectomy ;. hysterectomy ;. bladder repair ;. osteoarthritis ;. family history cerebrovascular accident cancer ;. tick bite ;. onset nausea ataxia right facial weakness ;. admission local ;. diagnosis LYME disease nervous system ;. elevated serum cerebrospinal fluid igm igg titers borrelia burgdorferi ;. intravenous ceftriaxone ;. transfer progression cranial nerve deficits ;. lyme disease ;. secondary bell palsy cerebellar involvement ;. right lid lag ;. heberdeen nodules ;. elevated serum cholesterol ;. aspiration pneumonia ;. pleocytosis ;. mononuclear per lumbar puncture ;. area increased signal ;. weighting noted right cerebellar peduncle ;. enhanced ;. gadolinium ;. white matter lesions corona radiata per magnetic resonance imaging ;. multiple temperature spikes ;. enterobacter species per sputum culture ;. broad spectrum antibiotics ;. right vocal cord paralysis per nasopharyngeal endoscopy ;. acute respiratory arrest ;. intubation ;. extubation required one hour ;. chest radiograph consistent ;. new bilateral aspiration pneumonia ;. admission stereotatic biopsy pontine lesion ;. left gaze paresis anisocoria right cornea decreased sensation bell palsy uvula deviated right ataxia upper extremities ;. consistent ;. right pontine lesion ;. blot negative lymph disease ;. negative rheumatoid factor ;. serum rapid plasma reagin positive ;. broad spectrum antibiotics ;. pulmonary infiltrates per chest radiograph ;. anemia ;. small left pleural effusion sonography ;. atelectasis pleural effusion negative lymphadenopathy negative definite masses per computerized tomography ;. extensive necrosis ;. lymphocytes atypical poorly preserved suggestive negative diagnostic small cell malignant neoplasm per nervous system sterotactic needle aspiration ;. necrotic tissue cannot determine specimen represents necrotic brain abscess tumor per pons needle biopsy ;. steroid therapy ;. tracheostomy ;. mechanical ventilation ;. hypotensive episode responsive fluid resuscitation ;. feeding tube ;. heme positive loose stools ;. conjunctivitis treated ;. topical gentamicin ;. right gaze palsy ;. leukocytosis ;. percutaneous endoscopic gastrostomy tube placement ;. elevated cerebrospinal fluid glucose per lumbar puncture ;. extremely atypical ;. background mononuclear per cerebrospinal fluid analysis ;. left subclavian venous line ;. hypotensive episode responsive fluid resuscitation ;. increasing bilateral atelectasis versus infiltrates per chest radiography ;. antibiotic therapy ;. enterobacter per sputum culture ;. stable ring enhancing lesions posterior pons decreasing cortical edema exam less distortion fourth ventricle per magnetic resonance imaging study ;. diarrhea ;. positive assay clostridium difficile toxin ;. weaning ventilator ;. pulmonary toilet ;. supraventricular tachycardia per electrocardiogram responsive verapamil ;. recurrent atelectasis left lower lobe per chest radiograph ;. continuous positive airway pressure maintain airway ;. empiric flagyl ;. right subclavian line ;. maltophilia per sputum culture enterobacter ;. enterococcus ;. per urine culture ;. cardiopulmonary arrest ;. successful cardiopulmonary resuscitation ;. coma score ;. neurological exam consistent ;. brain death ;. heparin ;. lidocaine pressor agents ;. atrial tachycardia ;. intermittent atrial flutter fibrillation per electrocardiogram ;. increased arterial alveolar oxygen gradient ;. burst suppression pattern consistent ;. severe anoxic brain injury per electroencephalogram ;. negative resuscitate status ;. death ;. well differentiated primary cns lymphoma ;. associated hemorrhage necrosis right inferior cerebellar peduncle brain ;. severe ischemic ;. anoxic ;. encephalopathy cerebral cortex cerebellum brain ;. lacunar infarcts midbrain putamen brain ;. adenoma right kidney ;. acute chronic pancreatitis pancreas ;. chronic passive congestion intrahepatic cholestasis steatosis liver ;. organizing pneumonia right left lower lobes lung ;. focal active pneumonitis lungs ;. scattered cytomegalovirus intranuclear inclusions ;. organized thromboemboli lung ;. leiomyomas stomach esophagus ;. congestion edema lungs ;. weight gms ;. calcified granulomas ;. greatest diameter ;. lower lobe left lung ;. mild atherosclerosis left anterior descending right coronary arteries heart ;. cardiomegaly ;. left ventricular hypertrophy heart ;. fatty infiltration right ventricle heart ;. atherosclerotic plaque ;. stenosis superior mesenteric artery ;. moderate complicated atherosclerosis aorta ;. mild atherosclerosis pulmonary artery ;. degenerative joint disease vertebra ;. hemorrhagic urethritis cystitis urinary bladder ;. hematomas rib fractures anterior chest wall thorax ;. cardiopulmonary resuscitation ;. ulcer gastroesophageal junction ;. cytomegalovirus inclusions underlying endothelium ;. diverticulosis colon ;. tracheostomy tube trachea ;. heberdeen nodes nodes radial deviation distal interphalangeal phalanges hands ;. mild pedal edema ;. surgical absence uterus ovaries ;. hysterectomy
Autopsy No.: #26488 positive LYME serology Case No: 7. Autopsy No.: #26488 Age (decades): 40 Sex: Decade of Autopsy: 1990 Key Number: 26972 diagnosis multiple sclerosis age ;. progressive deterioration neurologic status requiring total care admission ;. intravenous adrenocorticotropic hormone ;. adjustment medications ;. phenobarbital ;. positive LYME serology ;. admission meridian nursing center hills ;. paraplegia ;. postural tremor ;. recurrent ;. coli urinary tract infection ;. aspiration thin liquids ;. increased difficulty swallowing ;. decreased oral motor control ;. five pound weight loss past six months ;. declining mental status ;. patient family decision gastrostomy tube placement secondary patient wishes against artificial life support ;. initiation comfort care only orders ;. discontinuation food fluids ;. elevated temperatures degrees ;. shallow respirations ;. apneic spells ;. decreased responsiveness ;. death hours ;. extensive multiple periventricular demyelinated plaques bilateral cerebral hemispheres cerebellum basal ganglia brainstem high levels cord ;. brain weight ;. moderate hydrocephalus vacuo ;. purulent material ;. bacterial overgrowth bronchi bilateral lungs consistent ;. aspiration ;. focal hemorrhage small foci acute bronchopneumonia apical posterior basilar bilateral lungs ;. combined weight ;. squamous metaplasia urinary bladder ;. cause death ;. multiple sclerosis ;.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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tailz
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I think they probably are aware of the fact that these microbial infections are behind virtually every disease known to mankind - from diabetes to cancer.
Add to that the fact that every one of us eventually WILL test positive for Lyme or one of these bugs.
If they cure us of Lyme today, they will lose not only the money it costs to cure us, but also a hefty steady income down the road to cure our diabetes or cancer.
If I could figure this all out with an infected brain in one year, I can't believe that scientists have yet to connect the dots.
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tailz
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Skyler - just wanted to add - you're awesome;)
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WildCondor
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Here you go!
Oversight Hearing Lyme Disease: A Diagnostic and Treatment Dilemma Senate Committee on Labor and Human Resources August 5, 1993 Joseph J. Burrascano, Jr., M.D.
There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight. Unfortunately many of them act unscientifically and unethically. They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own. They exert strong ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed. They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions. They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest.
This group promotes the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 30 days or less of antibiotics.
The truth is that Lyme is the fastest growing infectious illness in this country after AIDS, with a cost to society measured in the billions of dollars. It can be acquired by anyone who goes outdoors, very often goes undiagnosed for months, years, or forever in some patients, and can render a patient chronically ill and even totally disabled despite what this core group refers to as "adequate" therapy. There have been deaths from Lyme disease.
They feel that when the patient fails to respond to their treatment regimens it is because the patient developed what they named "the post Lyme syndrome". They claim that this is not an infectious problem, but a rheumatologic or arthritic malady due to activation of the immune system.
The fact is, this cannot be related to any consistent abnormality other than persistent infection. As further proof, vaccinated animals whose immune system has been activated by Lyme have never developed this syndrome. On the other hand, there is proof that persistent infection can exist in these patients because the one month treatment did not eradicate the infection.
Indeed, many chronically ill patients, whom these physicians dismissed, have gone on to respond positively and even recover, when additional antibiotics are given.
It is interesting that these individuals who promote this so called "post-Lyme syndrome" as a form of arthritis, depend on funding from arthritis groups and agencies to earn their livelihood. Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy beyond this arbitrary 30 day cutoff, even if the patient will suffer. This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.
Following the lead of this group of physicians, a few state health departments have even begun to investigate, in a very threatening way, physicians who have more liberal views on Lyme disease diagnosis and treatment than they do. Indeed, I must confess that I feel that I am taking a large personal risk here today by publicly stating these views, for fear that I may suffer some negative repercussions, despite the fact that many hundreds of physicians and many thousands of patients all over the world agree with what I am saying here. Because of this bias by this inner circle, Lyme disease is both underdiagnosed and undertreated, to the great detriment to many of our citizens. Let me address these points in more detail.
UNDERDIAGNOSIS
1. Under reporting: The current reporting criteria for Lyme are inadequate and miss an estimated 30 to 50% of patients. Some states curtailed their active surveillance programs and saw an artificial drop in reported cases of nearly 40%, leading the uninformed to believe incorrectly that the number of new cases of Lyme is on the decline. The reporting procedure is often so cumbersome, many physicians never bother to report cases. Some physicians have found themselves the target of state health department investigators. Finally, to many physicians and government agents rely on the notoriously unreliable serologic blood test to confirm the diagnosis.
2. Poor Lyme disease diagnostic testing: It is very well-known that the serologic blood test for Lyme is insensitive, inaccurate, not standardized, and misses up to 40 percent of cases, yet many physicians, including many of those referred to above, and the senior staff at CDC and NIH, insist that if the blood test is negative, then the patient could not possibly have Lyme. This view is not supported by the facts. Lyme is diagnosed clinically, and can exist even when the blood test is negative.
The Rocky Mountain Lab of the NIH, which is the country's best government laboratory for Lyme research had developed an excellent diagnostic test for this illness nearly 4 years ago, yet further work on it has been stalled due to lack of funding. Incredibly, if not for private donations of just $5,000 from the non-profit National Lyme Disease Foundation headquartered in Connecticut, then this reaseach would have had to be abandoned.
An additional $30,000 was donated by this organization to allow them to continue other valuable projects relating to vaccine development and disease pathogenesis. Yet, many physicians believe that thousands of dollars of grant moneys awarded by the government to other, outside researchers is poorly directed, supporting work of low relevance and low priority to those sick with Lyme. In spite of this, their funding continues, and the Rocky Mountain Lab is still underfunded.
3. The university and Government based Lyme establishment deny the existence of atypical presentations of Lyme and patients in this category are not being diagnosed or treated, and have no place to go for proper care. RESULTS: Some Lyme patients have had to see, as many as 42 different physicians often over several years, and at tremendous cost, before being properly diagnosed. Unfortunately, the disease was left to progress during that time, and patients were left forever ill, for by that time, their illness was not able to be cured. Even more disturbing, these hard line physicians have tried to dismiss these patients as having "Lyme Hysteria" and tried to claim they all were suffering from psychiatric problems!
UNDERTREATMENT
1. Because the diagnosis is not being made, for reasons partly outlined above.
2. University based and government endorsed treatment protocols are empiric, insufficient, refer to studies involving inadequate animal models, and are ignorant of basic pharmacology. They are not based on honest systematic studies or on the results of newer information.
3. After short courses of treatment, patients with advanced disease rarely return to normal, yet many can be proven to still be infected and can often respond to further antibiotic therapy. Unfortunately, Lyme patients are being denied such therapy for political reasons and/or because insurance companies refuse to pay for longer treatment, upon the arbitrary and uninformed advice of these physicians, who are on the insurance company's payroll.
4. Long term studies on patients who were untreated or undertreated demonstrated the occurrence of severe illness more than a decade later, reminiscent of the findings of the notorious Tuskeege Study, in which intentionally untreated syphilis patients were allowed to suffer permanent and in some cases fatal sequelae.
5. The Lyme bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibiotics, such as in the eye, deep within tendons, and within cells. The Lyme bacterium also has a very complex life cycle that renders it resistant to simple treatment strategies. Therefore, to be effective, antibiotics must be given in generous doses over several months, until signs of active infection have cleared. Because relapses have appeared long after seemingly adequate therapy, long term followup, measured in years or decades, is required before any treatment regimen is deemed adequate or curative.
6. When administered by skilled clinicians, the safety of long term antibiotic therapy has been firmly established.
The very existence of hundreds of Lyme support groups in this country, and the tens of thousands of dissatisfied, mistreated and ill patients whom these groups represent, underscores the many problems that exist out in the real world of Lyme disease. I ask and plead with you to hear their voices, listen to their stories, and work in an honest and unbiased way to help and protect the many Americans whose health is at risk from what now has become a political disease.
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Skyler...you ROCK!
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