Chronic Lyme disease

in Uncategorized | 28 responses

Nothing stokes the passion of activists like rebuking the mercury-vaccine association, as well as the existence of chronic Lyme disease. The Angry Doctor gives it his best shot:

The attorney general of Connecticut has begun an unprecedented antitrust investigation of the Infectious Diseases Society of America, which issued treatment guidelines for Lyme disease that do not support open-ended antibiotic treatment regimens
An attorney general is actually pursuing legal action against an academic society because they disagree with his unscientific view of a bogus clinical entity that is disproved by science. Saying I am shocked and nauseated does not begin to describe my true feelings. . .
. . . science is now being dictated to by people who have absolutely no idea what they’re talking about, and aren’t interested in real research.

Comments

Anonymous
There are a lot of wackos posting on his board.
ERMurse
Judging from the comments posted at the Angry Doctor’s site, most by anonymous, it is clear to me that the chronic Lyme disease crowd is more likely suffering from severe depression and other forms of mental illness. The volume of comments and obsession with being sick is truly pathetic. In California, the Lyme crowd serves public health agencies with endless public records requests including their work emails to badger and intimidate anyone who dares question the religion of Lyme disease. They show up at meetings and conferences and shout down people who try to present evidence that is counter to their obsession. They flood blogs and any other forms with comments and feedback that overwhelms the debate. My only question to them is, After Chronic Lymes is finally disproved what disease will you move onto next? Fibromylagia, Chronic Fatigue, Epstein Bar, Toxic Mold, Chemical Sensitivity syndromes, – Oh, I forgot, most Chronic Lymes people have experienced these. Guess they will have to invent something new.
shadowfax
They already have:
Morgellons
It will never end.
Anonymous
This case,if it goes to court, may end up in the U.S.Supreme Court, and the Supreme Court judges, with their infinite wisdom, may have to decide whether chronic lyme disease actually exists. And if they decide it is indeed an ailment, then these “victims” should qualify for social security benefits and Medicare. Such big decisions should not be left in the hands of infectious disease doctors and scientists.
Anonymous
It seems there will always be people who want to have a disease. They never want something easy to cure; they want a life-long, debilitating, chronic ailment with long, complex treatment regimens that make no medical sense.
We have all known patients who live with chronic diseases. They talk about their lives.
All these patients talk about is how terrible they feel. They never mention reading a book, seeing a movie, going to a wedding (unless it is to say “I was too sick to go”), playing bridge with friends or doing anything fun. They never mention living.
No different from patients who are incapacitated by other disease we cannot measure such as fibromyalgia, “hypothyroidism with normal T4″, “Adrenal faitgue” and their ilk.
I understand that some patients want to feel lousy, but why I am obligated to give them a PICC line, disability, and 6 months of IV antibiotics? If they want these things, let them pay for them out of pocket. It’s not medical care, it’s recreational use of drugs and medical equiptment.
Anonymous
It is indeed amazing the amount of Lymie vitriol cast at the Angry Doctors page.
Some of them may have real diseases that we don’t understand. However, I highly doubt that the patient’s have any greater insight into the biology of their condition than infectious disease specialists.
The lymies cast the situation as them versus the doctors, in a typical paranoid rant. Problem is, there is no reason to believe that the docs have any motivation to withold treatment. If an ID doc could legitimately find a new chronic disease that they could treat then why not? They have a revenue incentive, prestige incentive, and humanitarian mission.
But the lymies are of the same persuasion as the folks who think Big Oil has 100 mpg engine technology it is hiding, that cancer has been cured for decades but oncologists are still letting even their own family members die of the condition, and that the moon landings were faked.
An ID RN, MSN
I am a Registered Nurse in an infectious disease clinic. You are clearly ignorant of the physiological state of these victims.
Most are victims to chronic lyme because they were not properly diagnosed and treated with high dose antibiotics at the first signs of the disease.
Unfortunately ER docs and clinicians don’t give a rats ass or understand the seriousness of tick-borne diseases. Docs tell patients not to worry about the tick bite or wait until they have arthritis, which is insane.
Have you ever had a patient die from chronic lyme disease due to multiple system organ failure and be declared brain dead? Have you actually investigated the pathological process of how lyme and other tick-borne diseases invades the brain and lives within the neurons even after antibiotics? Do you understand that many of these individuals have damaged brainstems, lesions on their brains, abnormal EMGs or EEGs, excessive inflammation, abnormal cognitive function tests, and poorly functioning immune systems? Do you understand that when they get encephalitis (more common than you think) that there is permanent brain damage just like in West Nile neuroinvasive disease and other arboviruses? These people are in wheelchairs and don’t have lives for a reason – because the medical system has failed them.
They have a right to be angry. ER nurse, you are correct that some do suffer from depression as a comorbidity to chronic lyme infection. Lyme disease IS a brain disease.
Have you read the research from a Dr. MacDonald that found Borrelia spirochetes on autopsy in many patients that supposedly died from Alzheimer’s?
Have you researched the fact that Lyme causes a quantifiable decline in cognition? Many qualify for disability but choose to work despite having pain due to neuralgia and joint arthritis. Despite ignorance of medical professionals and the general public about neuroborreliosis, many do continue to work and have lives. My patients do have lives. They have personal connections with friends and family, go to their children’s ball games, and church. They are not wackos are you perceive them to be. They are not drug seeking in my experience. Most do not want to take pain pills for their pain. I have NEVER in my experience had a patient become addicted to narcotics, because narcotics are used rarely in our clinic for Lyme patients.
There is objective evidence of persistence of the disease despite antibiotics. We are currently working with a pathologist who is studying tissue samples and serum from those with severe persistent Lyme and are able to document undeniably the presence of spirochetes in these people despite antibiotics. I am appalled that physicians don’t know how to use microscopy anymore to see the damn bugs themselves. Hell, my daughter in high school found a spirochete in a sample I gave her when she was in biology class.
Can you prove that the existence of these spirochetes in their eyes, heart, gallbladders, etc can not cause their continued signs and progressive physical decline?
Why can’t you simply take the time to READ about Lyme disease causing motor neuron damage and Lyme causing carditis and Lyme causing lesions on the brain?
People are dying every year from chronic Borreliosis and that is why these people are angry. They are angry because you have no compassion, you mock them, and call them pathetic.
I became a nurse to help individuals, not make fun of them. Shame on you all.
Mike
I’m a radical of the medical profession???
I was quoting the NEW ENGLAND JOURNAL OF MEDICINE on my page!!!
If that’s not mainstream enough for you, then you need to move to Montana.
keeptalking
How sad it is to see grown men and women, and professionals at that, act like kids in a playground; using bullying tactics on those most vulnerable.
Most doctors haven’t got the time to be experts at everything. But, if “they” are going to have an opinion on a specialized and complex issue, and be defensive about it, then it seems reasonable to expect that those doctors should have read ALL the evidence, from both sides, before coming to any conclusion and forming such opinions. Yet, it’s pretty obvious that hasn’t and isn’t happening. Yes, it would take a LOT of work because there is SO MUCH evidence to support the existence of chronic Lyme disease. It would take a bit of time too. So, perhaps that is why so many of you can’t seem to be bothered. Or is it because you worry you’ll be ridiculed by your colleagues when you discover that there’s more to this that you were led to believe?
Please go back and read ALL the evidence, from both sides. Start with reading the study just published in the journal Neurology by Dr.Brian Fallon of Columbia University. Follow that with visiting http://www.ilads.org . http://www.lymeinfo.net (many abstracts on persistence here) and http://www.lymediseaseassociation.org and why not attend the ILADS and LDA conferences October 26-29th and see and hear in detail exactly what it is you are all criticizing so defensively.
Are all Lyme patients making so much noise because they LIKE to be bullied and humiliated, like being treated with hostility and disgust and because they’re stupid and can’t read and understand medical papers? Or are they doing it because they are and have regained their lives on long-term antibiotics for chronic Lyme disease (assuming such a medical history and supporting lab results are there)? Why would any doctor put their necks and livelihoods on the line and live in constant fear of persecution for no good reason? They could be raking it in and having a much easier life if they only chose to turn AWAY from treating persistent Lyme disease and focused on something else. Why are patients willing to make themselves look like “pathetic idiots” and “keep badgering” those that do not want to listen? For fun? No. ‘Cause they’re insane and bored and pathetic? Absolutely not. Do not fool yourselves. Patients would not get this worked up and risk making themselves look obsessed, etc, to defend their doctors so vigorously if there was no reason to do so. Where are the patients defending the IDSA and the effectiveness of their guidelines and treatment? Many of us ARE ex-IDSA doc patients and were FAILED by them and therefore ended up in the other “camp”, which we have found to actually work and restore our health. (and livelihoods,etc)
Patients, like all other consumers, are not loyal to a “product” if the product is no good. Why are thousands of us making such a stink? Do not presume they are stupid and do not know what they are talking about or that they cannot read.
Why are they “screamingW things like “after 5, 10, 20 years I have my life back with this treatment and these heroic doctors”?? Or “my 4 week Lyme treatment as recommended by IDSA failed, but after 6 months or 12 months of antibiotics I am well.
Why are the authors of the IDSA guidelines contradicting their earlier OWN WORK which clearly says Lyme becomes chronic of un- or under-treated? Why do YOU think some of these authors of these guidelines are being investigated by the CT State Attorney general for antitrust violations. Why do some of the authors of the latest, narrow, guidelines on Lyme disease hold patents for better testing and vaccine development for Lyme disease?
Why would we need a vaccine for an infection that is rare, uncomplicated, hard to catch and quick and easy to cure?
It is a pity so many are still wandering around, led to believe they have “CFS” or “Fibromyalgia” or even MS with no relief in sight when they may not. I hate to get personal, but I am one of those. Over 15 years “wasted” while I got worse with those waste-basket diagnoses and a dozen doctors who could not recognize my early symptoms of EM rashes, fevers, etc even though I come from within a stone’s throw of Lyme, CT. My diagnosis was missed for more than 15 years…….by this time my disease was CHRONIC, believe it or not!! How can that seem to unbelievable and unlikely???
Not once during this time or since that time did I apply for disability, although I could have. Never have I felt sorry for myself. Never have I been pathetic. Never have I malingered. I think those are more often words used by doctors and nurses who cannot or do not want to understand the problem we’re talking about and who take the easy option of making the patient the problem instead. They are the ones being truly pathetic and lazy and adding to the suffering of many.
Who are you going to call when it happens to you or your loved ones? They get a tickbite. They might get a rash. They get persistent fevers and pain and lots of other “crazy” symptoms. Thirty days of antibotics don’t take those symptoms away or the symptoms return a little while after the “sufficient” treatment is finished. Would you just leave it at that and decide they’re pathetic and malingering or would you consider the possibility the 30 days antibiotics did not work and that the Lyme was persisting and becoming chronic?
Who did The President’s office call when the President came down with Lyme?
Anonymous
“I am appalled that physicians don’t know how to use microscopy anymore to see the damn bugs themselves.”
Over 10 years ago, all of the teaching microscopes were removed from my residency program. Fecal occult blood kits were removed at the same time. You can thank your representatives in congress. Please see CLIA.
http://www.cms.hhs.gov/CLIA/
And a decent history of CLIA:
http://dhi.health.state.nm.us/clia/cliahistory.php
You will note that microscopy for spirochetes is not included in the waived Provider Performed Microscopy Procedures list for which CLIA rules are waived. So if one accepts Medicare, one cannot perform microscopy for spirochetes without becoming a certified laboratory. (Not just certified in microscopy).
Another example of – be careful what you ask for, you just might get it.
Anonymous
“Remember you are on the internet at a blog where the radicals of the medical profession visit. their views are not that of the REAL majority of medical professionals.”
And just how would YOU know what the views of REAL medical professionals are? Are you a doctor? You know any physicans who are happy in their work? If you do, then they are in the minority. If anything, all the docs I know (I am a physician and, I guess, a proud radical) are sick and tired of the current healthcare system that screws us repeatedly, and a tort system that allows us to be sued at the drop of a hat.
And the same people who beat the drum that there needs to be evidence based medicine get all bent out of shape when they’re told there’s no evidence to support the concept of chronic Lymes.
ERMurse
ID RN and the person who followed: So if all that is true why did not the New England Journal of Medicine recognize it when they did a review of published literature and basically say that Chronic Lymes Treatment is without merit and the syndrome is rare and over applied. Just another conspiracy theory? I trust their work much more than testimonial level evidence or stuff that can’t pass peer review in mainstream journals that the lymes people cite. I guess accomplished people in medicine have nothing better to do than attack depressed people and take away their diagnosis. The problem with the lyme crowd is once they are convinced or have convinced themselves or others that they have chronic Lymes condition they stop getting legitimate work-ups to discover what is causing their symptoms and they become susceptible to all kinds of crack pot treatments
Anonymous
Klempner is on the editorial board of NEJM..ER NURSE there is your answer, at least in part.
What about the journal Neurology, ER NURSE, do you trust that publication?
They just published a study in the last week that chronic Lyme does exist and that patients benefit from extended antibiotic treatment.
This is a highly politicized disease, so you’ve got to use your brain and make a little effort to scratch beneath the surface and do your own homework to learn about it and that takes work.
There are thousands of papers you could read on the subject….if you could be bothered.
Christina
The link below is to Dr. Jemsek’s rebuttal of Fedder’s NEJM article. It’s fantastic.
http://www.jemsekspecialty.com/files/NEJM-Response.pdf
Anonymous
I’ve got an old picture of people picketing the AMA building in Chicago back in 1963.
The AMA was suppressing a cure for cancer.
Krebiozen. Surely you’ve heard of it.
Then it was Laetrile in the 1970′s. That would be my college days. On more than one occasion, allegedly educated people stating to me, as a fact, that the AMA was suppressing cancer cures. I was the premed so people felt I was somehow responsible. One was faculty. Most of the rest went to law school or government…..
Are you giving to the status thymolymphaticus foundation? That was more 1940′s, I think the last writing was about the 1950′s.
I keep a little mini-museum of drugs withdrawn from the market deemed ineffective or unsafe. I get my material from the drug reps, I hold on to a box or two when it’s withdrawn. I like to show it off to the reps once in a while. This is the stuff you tried to sell me on, last year.
I don’t have a dog in the chronic Lyme fight. I’m agnostic. I recognize it took some pushing to get Lyme recognized in the first place. I also recognize the public has pushed organized medicine over demonstrably worthless treatments. And medicine has invented nonexistant diseases.
Happyman
“What about the journal Neurology, ER NURSE, do you trust that publication? “
YES:
(excerpted from Neurology 2003;60:1916-1922)
“Cognitive function in post-treatment Lyme disease Do additional antibiotics help?…Conclusion : Patients with post-treatment chronic Lyme disease who have symptoms but show no evidence of persisting Borrelia infection do not show objective evidence of cognitive impairment. Additional antibiotic therapy was not more beneficial than administering placebo. “
ID RN,MSN
Source: NIH, National Institute of Neurological Disorders and Strokes – “Neurological complications most often occur in the second stage of Lyme disease, with numbness, pain, weakness, Bell’s palsy (paralysis of the facial muscles), visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headache. Other problems, which may not appear until weeks, months, or years after a tick bite, include decreased concentration, irritability, memory and sleep disorders, and nerve damage in the arms and legs.
What is the prognosis?
Most individuals with Lyme disease respond well to antibiotics and have full recovery. In a few patients symptoms of persisting infection may continue or recur, requiring additional antibiotic treatment. Varying degrees of permanent joint or nervous system damage may develop in patients with late chronic Lyme disease. In rare cases, some individuals may die from Lyme disease and its complications.” end quote
There are about 23,000 confirmed cases of LD annually now, and I have read that some 5-10% develop persistence and late chronic lyme disease. Many of these 20-23,000 have neurological damage.
ERnurse said, “The VOLUME of comments and obsession with being sick is truly pathetic.” Perhaps there is an EPIDEMIC going on right now that is under your nose, but you are too close minded to recognize it!
Try starting here to read about persistence:
Annals of Medicine, 1999,31(3):225-32 “Of 165 patients treated for disseminated Lyme borreliosis with three months or more of antibiotics (including a minimum of two weeks of ceftriaxone), 32 had treatment failure. At follow-up, 13 patients with clinical relapse were PCR or culture positive (10 PCR positive, 1 culture positive, 2 PCR and
culture positive). “In this study, culture or PCR-based evidence for the presence of live spirochetes was obtained in more than 40% of the patients with relapsed
disease.”
The treatment caused only temporary relief in the symptoms of the patients.
We conclude that the treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months may not always eradicate the spirochete.”
Ital J Neurol Sci, Oct;20(5):303-7 “Lyme disease is a polymorphic and multisystemic disease caused by Borrelia burgdorferi. Neurological manifestations are found in 10%-50%
of cases. We present 2 cases followed for 5 and 6 years of chronic relapsing-remitting neuroborreliosis.”
Klin Lab Diagn, 3:34-7 “Patients with persistent levels of antibodies to B. burgdorferi, even without clinical signs of infection, are in need of regular check-ups, because the
prognostic significance of antibodies to B. burgdorferi is unknown and relapses may occur after months and years.”
Med J Aust, May 18;168(10):500-2 “We report a case of Lyme borreliosis. Culture of skin biopsy was positive for Borrelia garinii, despite repeated prior treatment with antibiotics.”
Klin Monatsbl Augenheilkd, 213(6):351-4 “Despite of [sic] intravenous application of ceftriaxon for 14 days panuveitis persisted, and endophthalmitis developed when antibiotic therapy was finished….Despite of a second intravenous ceftriaxon treatment for 14 days we observed a retinal vasculitis in the follow up of 6 months. CONCLUSIONS: Despite intravenous ceftriaxon-therapy borrelia burgdorferi must have survived in the vitreous body.”
Annals of the Rheumatic Diseases, 57(2):118-21 “Paired SF [synovial fluid] and SM [synovial membrane] specimens and urine samples from four patients with ongoing or recurring Lyme
arthritis despite previous antibiotic therapy were investigated. RESULTS: In all four cases, PCR with either primer set was negative in SF and urine, but was positive with at least one primer pair in the SM specimens.
CONCLUSIONS: These data suggest that in patients with treatment resistant Lyme arthritis negative PCR results in SF after antibiotic therapy
do not rule out the intraarticular persistence of B burgdorferi DNA. Therefore, in these patients both SF and SM should be analysed for borrelial DNA by
PCR as positive results in SM are strongly suggestive of ongoing infection.”
American College of Rheumatology, Vol 40(9) Suppl,
Rao J; Gerard H; Sept1997, p.S270 “PCR evidence for Borrelia has been identified in synovial biopsies of patients with clinical pictures that had not initially suggested Lyme disease. All [6 PCR-positive] patients were negative for antibodies to Borrelia and some were PCR positive in synovium despite previous treatment with antibiotics.”
1996 Treatment failure in erythema migrans: a review. Infection, 24:73-5.
[From the abstract:] ” Patients with erythema migrans can fail to respond to antibiotic therapy. Persistent or recurrent erythema migrans, major sequelae such
as meningitis and arthritis, survival of Borrelia burgdorferi and significant and persistent increase of antibody titres against B. burgdorferi after antibiotic therapy are strong indications of a treatment failure. Most, if not all, antibiotics used so far have been associated with a treatment failure in patients with
erythema migrans.”
Human Pathology, Vol 27(10):1025-34 “[From the abstract:] Electron microscopy [both EM and IEM were used] adds further evidence for persistence of spirochetal antigens in the joint in chronic
Lyme disease. Locations of spirochetes or spirochetal antigens both intracellulary and extracellulary in deep synovial connective tissue as reported here
suggest sites at which spirochaetes may elude host immune response and antibiotic treatment.
[From the article:] If spirochetes are already sequestered in tissue that is inaccessible to antibiotics such as in the fibrinous and collagen tissue or within
fibroblasts, high-dose parenteral antibiotics, or combination therapies with long duration may be needed to kill the living spirochetes. ” (p.1032)
Infection, 24(3):218-26 “…clinical persistence of Borrelia burgdorferi in patients with active Lyme borreliosis occurs despite obviously adequate antibiotic therapy…
The persistence of Bb even after therapy with antibiotics has been demonstrated in cerebrospinal fluid (CSF), in skin, iris,heart and joint biopsies.
[Cysts:] In vitro investigation of morphological variants of B. burdorferi, in an effort to explain the clinical persistence of active Lyme borreliosis despite
antibiotic therapy. The authors suggest that these atypical forms may allow Borrelia to survive antibiotic treatment.”
Infection, 24 No.5 “The urine of 74.2% of patients previously treated with antibiotics for Lyme disease was found to be positive for B. burgdorferi DNA using PCR testing. All
patients (n=97) had prior documented EM rash and had received a minimum of 3 weeks to 2 months oral or intravenous antibiotics. In 4 patients, PCR
results were temporarily negative after treatment, but became positive again 4-6 weeks later. All patients suffered continuing, often gradually worsening
Lyme disease-like symptoms. …it seems to be characteristic for most of the patients in our study that, after antibiotic-free periods of a few months, they had
again become increasingly ill with neurological and arthritic symptoms, so that treatment had been resumed.”
American Journal of Dermatopathology, 18(6):571-9 “Neuralgias arising 6 months after ECM in spite of antibiotic therapy were evident in a seronegative patient who showed perineural rod-like borrelia structures.”
Brain, Dec;119 ( Pt 6):2143-54. “In one of the six analysed brain tissue specimens [from a patient who had received more than six months of antibiotic treatment prior to death, including two
3-week courses of IV ceftriaxone], B. burgdorferi DNA was detected by PCR.”
Infection, 24(1):9-16 “…the persistence of B. burgdorferi s.l. and clinical recurrences in patients despite seemingly adequate antibiotic treatment is described…”
European Neurology, 35(2):113-7 “[From the abstract:] This article reports a Lyme disease patient who experienced repeated neurologic relapses despite aggressive antibiotic therapy. The
Coyle PK. patient was seronegative. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on
multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.
[From the article:] Before her 6th hospital admission this patient had received four courses of ceftriaxone, one of cefotaxime and two of doxycycline (of 19
and 8 weeks). Increasing right hemiparesis and dyspnea with right intercostal muscle weakness prompted her 6th admission to the hospital. Following
intravenous ceftriaxone for 2 weeks, it was decided to place the patient on long-term therapy [22 months] with clarithromycin. Although there is no information
on the penetration of clarithromycin into the CNS, it achieves high concentrations within macrophages [18] a known sanctuary for the Bb spirochete [19]. The
clinical response to clarithromycin in this patient has now been sustained for over 22 months.
…Survival of Bb in humans despite aggressive antibiotic therapy has been previously reported [2,22]. We believe this to be an example of a patient with
chronic relapsing Bb infection. It is important to evaluate unusual patients like this thoroughly in order to determine the effectiveness of prolonged oral
antibiotics as a therapeutic option.”
Journal of Neuropsychiatry Clin Neurosci, 7(3):345-7 “[From the abstract:] The authors report a case of fatal neuropsychiatric Lyme disease (LD) that was expressed clinically by progressive frontal lobe dementia and
pathologically by severe subcortical degeneration. Antibiotic treatment resulted in transient improvement, but the patient relapsed after the antibiotics were discontinued. LD [Lyme disease] must be considered even in cases with purely psychiatric presentation, and prolonged antibiotic therapy may be necessary.”
American Journal of Medicine, 88:4A-44S-51S. “…a 1-month course of oral antibiotics may not always eradicate viable spirochetes.”
Lancet, Vol 345: 1436-37 “Our patient received during 2 years seven short-term antibiotic treatments, achieving transitory improvements. Nonetheless, his condition greatly deteriorated. In October, 1993, he started a different antibiotic regimen (ceftriaxone, 2 g per day intravenously for 12 months, oral roxithromycin 150 mg per
day for 2 months, and oral ciprofloxacin, 500 mg per 12 hours for 2 months). After ceftriaxone he has continued with oral minocycline, 100 mg per 12 hours
for 7 months. His quality of life has greatly improved and the treatment is more tolerable than the borreliosis.
We add, however, in accord with the advice of others that antibiotics should be continued in the long term, until we achieve cure or delay the progression of
the disease.”
Annals of Internal Medicine, 120(6):487-9 “Our results show the intra-articular persistence of B. burgdorferi nucleic acids in Lyme arthritis and suggest that persistent organisms and their
components are important in maintaining ongoing immune and inflammatory processes even among some antibiotic-treated patients. Further studies are
needed to determine the microbiologic state of these organisms and their therapeutic and prognostic implications.” (p.489)
Journal of Rheumatology, 3:454-61 “…18 patients (8%) received intravenous antibiotics (penicillin in 14 and ceftriaxone in 4) as initial therapy and 6 (33%) of these patients relapsed.
…Subsequent courses of antibiotic therapy were used in 51 (24%) patients. Many received repeated courses of antibiotic therapy for disease relapse and had full or partial response to this treatment.”
Annals of Internal Medicine, 121(8): 560-7. “Ten of the 38 patients with Lyme disease reported relapses within 1 year of treatment… and had had repeated antibiotic treatment (5 patients with intravenous ceftriaxone). …Patient 4, in addition, had had second degree atrioventricular block with acute Lyme disease that resolved with penicillin treatment. Her irregular rhythm recurred 2 years later, resolved temporarily with ceftriaxone treatment, but progressed to complete heart block requiring a pacemaker. …Patient 12…was treated with 2 weeks of parenteral penicillin. She later developed a progressive speech disorder, bradykinesia, and abnormal ocular motor function. Magnetic
resonance imaging of the brain showed scattered white matter lesions in the hemispheres and pons… she was re-treated with 2 weeks of parenteral ceftriaxone in
1989 that had no effect on her neurologic symptoms. During the time of observation, this patient died. At autopsy… [using] Dieterle silver stain, a spirochete was present in the cortex and another was exterior to a leptomeningeal vessel.”
Journal of Clinical Microbiology, 32:1415-16. “[The patient] received 2 g of ceftriaxone daily for 4 weeks. Marked early clinical improvement was observed and continued for 3 weeks after therapy was
discontinued. He received 6 additional courses of intravenous antibiotics for 3 to 5 weeks’ duration (penicillin, doxycycline [two courses], and ceftriaxone [three courses]), and 1 oral antibiotic (azithromycin). His general condition improved, but each antibiotic course was followed by a relapse.”
*************** Should I go on? I have hundreds more! Open your eyes. Open your eyes. Open your eyes.
Anonymous
Study by Dr. Brian Fallon at Columbia University,published last week, abstract here:
http://www.neurology.org/cgi/content/abstract/01.WNL.0000284604.61160.2dv1
A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy
B. A. Fallon MD*, J. G. Keilp PhD, K. M. Corbera MD, E. Petkova PhD, C. B. Britton MD, E. Dwyer MD, I. Slavov PhD, J. Cheng MD, PhD, J. Dobkin MD, D. R. Nelson PhD, and H. A Sackeim PhD
From the Department of Psychiatry (B.A.F., J.G.K., K.M.C., E.P., I.S., J.C., H.A.S.), Department of Biostatistics (E.P.), Department of Neurology (C.B.B.), Department of Medicine (E.D., J.D.), and New York State Psychiatric Institute (B.A.F., J.G.K., K.M.C., E.P., I.S., J.C., H.A.S.), Columbia University, New York; and Department of Cell and Molecular Biology, University of Rhode Island, Kingston (D.R.N.).
* To whom correspondence should be addressed. E-mail: baf1@columbia.edu.
Background: Optimal treatment remains uncertain for patients with cognitive impairment that persists or returns after standard IV antibiotic therapy for Lyme disease.
Methods: Patients had well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment. Healthy individuals served as controls for practice effects. Patients were randomly assigned to 10 weeks of double-masked treatment with IV ceftriaxone or IV placebo and then no antibiotic therapy. The primary outcome was neurocognitive performance at week 12—specifically, memory. Durability of benefit was evaluated at week 24. Group differences were estimated according to longitudinal mixed-effects models.
Results: After screening 3368 patients and 305 volunteers, 37 patients and 20 healthy individuals enrolled. Enrolled patients had mild to moderate cognitive impairment and marked levels of fatigue, pain, and impaired physical functioning. Across six cognitive domains, a significant treatment-by-time interaction favored the antibiotic-treated group at week 12. The improvement was generalized (not specific to domain) and moderate in magnitude, but it was not sustained to week 24. On secondary outcome, patients with more severe fatigue, pain, and impaired physical functioning who received antibiotics were improved at week 12, and this was sustained to week 24 for pain and physical functioning. Adverse events from either the study medication or the PICC line were noted among 6 of 23 (26.1%) patients given IV ceftriaxone and among 1 of 14 (7.1%) patients given IV placebo; these resolved without permanent injury.
Conclusion: IV ceftriaxone therapy results in short-term cognitive improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition occurs after the antibiotic is discontinued. Treatment strategies that result in sustained cognitive improvement are needed
Happyman
ID RN:
did you even read YOUR OWN LONG-WINDED POST? some excerpts:
“treatment caused only temporary relief …antibiotics for even more than 3 months may not always eradicate the spirochete.”
“Despite intravenous ceftriaxon-therapy borrelia burgdorferi must have survived “
most of your quotes are either technical lab studies, or case reports/ case series – both of these are very LOW on the evidence scale. Also, some studies point out that antibiotics don’t effectively accumulate in e.g. joint spaces.
But you’re too blinded by your agenda to look at science or the scientific method, and of course in nursing school they don’t teach you that kinda stuff.
ID RN
“My agenda”. Lol. Hmmm. My agenda is that I like to see patients get well. I care with compassion at my day job and help others die with comfort and dignity with hospice on my weekend job. I occassionally enjoy reading medical blogs, until I find ANGRY doctors and ERnurses that hate what they do and take it out on their patients.
Apparently they forgot to teach you to read in your school!
The point of my post, which I will make more clear to you as a simpleton, is that the IDSA and their idiotic article in the NEJM denies the existence of chronic lyme disease. They clearly ignored many, many credible studies with statistically significant results indicating existence of chronic lyme disease, existence of spirochetes in tissues despite previous antibiotic therapy, deaths, etc.
As I said in my post, I have hundreds of published studies on file, autopsy reports, etc but don’t feel like wasting my time and energy here any further. I am not going to copy and paste all day here for you.
Evidence clearly exists to document persistence, relapse, etc. Treatment resistent borreliosis is real, just like other strains of drug resistant bacteria.
Physicians reading this blog, please read, read read and do your own homework. The evidence is there.
May God protect your patients, Dr. HappyDeath.
crystal
I resent this post. I only hope you and someone you love become very ill with Lyme disease and go undiagnosed and untreated for 10 years and THEN see how you feel. Then see how easy it is for you to cure yourself. I did not ask for this disease and I have no reason to pretend to have polyneuropathy, chest pain, joint pain, and hearing problems. I had everything most young women would want and my future looked even brighter. Due to subpar testing and treatment, my disease progresses so the bacteria was well-entrenched in the brain, bone marrow, and avascular areas where even the IV antibiotics couldn’t fully penetrate. Thanks to long-term antibiotic treatment, I am almost cured of a disease that almost killed me. I am not a Dr, but I am fairly well-educated. I can easily read all the research and I can determine what journal articles to rely on. In fact, I diagnosed myself after many Ds failed me. After I pointed out that my symptoms seemed like teriary Lyme or late-stage syphlis, I FINALLY tested positive and all my Drs were very sorry that they didn’t treat me sooner.
Also, teriary syphilis is known to relapse and sometimes require multiple IV treatments. In Russia, they give teriary syphilis patients a year of doxy after taking some penicillin shots to the buttocks.
Even some med schools are teaching students that long-term antibiotics are being employed by practioners, even though the guidleines do not indicate this is required or neccesary. I think some Drs just do exactly what they are told to do and cannot keep up with the latest research and cannot think for themselves. It amuses me how these Drs can be so smug. Losers.
Anonymous
I’m not worried or bothered by your uninteligent, mean and hurtful comments. What goes around, comes around. You will be singing a different tune one day when a little pin-head tick comes to visit you.
Rage Against The Machine
Primary Care physicians are pathetic. They are paralyzed with the fact of treating anything other than the common cold. I cant wait until they are replaced by an objective search of your symptoms on google, which studies suggest have a better success rate. I cant count how many “doctors” tried to push their antidepressants on me before i was finally diagnosed with Lyme Disease
The ironic thing is that these uninspired cold-hearted bureaucrats are the ones that perscribe the medicine.
They diagnose based on their less that accurate tests. They are to afraid of making a decision based on symptoms. Then if you do get treated ,they give some half a**ed treatment. When a short course of antibiotics doesnt cure the disease, they say it is impossible. I guess they havent heard of MRSA or drug resistant TB, etc.
With “doctors” like that, no wonder the US is ranked at the bottom of industrialized countries when it comes to “health care”.
Chronic Lyme is really a disease caused by having a crappy “doctor”.
Anonymous
I have Chronic Lyme. I will only mention one manisfestation of it. One morning I awoke to find one side of my face did not match the other. I was stunned. I saw my Dr that day and he immediately thought I had a stroke. It was Bells Palsy… brought on by Chronic Lyme. How does one fake Bells Palsy? And for God’s sake.. why? Want to know how quick you can change youself to a believer? Just let your loved one come down with it and see how you scramble to find a cure.. and how you react to those that would say these things about your loved one.
Anonymous
"there are more things and heaven and earth, Horatio…"
i.e. http://www.cdc.gov/ulcer/history.htm
Throughout the early 20th C, stress & diet were thought to be the cause of Ulcers.
In 1982 the link between ulcers and a bacterium was found.
It took until 1994 for the CDC recommendation to change for ulcer treatment (to that of abx).
Since such a low number of ulcer patients were treated with antibiotic therapy, the CDC and other agencies felt that an education campaign was warranted–
surrounding this discovery in the year 1982.
Lyme Disease may very well pan out to be like so many other conditions.
to
No this is not odd. Think back to your medical history classes (I know some pre-med programs don’t require it anymore. But as far back as Yellow Fever epidemic in Philadelphia where doctors left the epidemic area (as any smart person would) and divided into 2 unhelpful camps arguing about the cause and treatment of Yellow Fever. One argued it was the environment – the other camp argued it was human to human contact. Turns out they where both right – but as they argued 10% of Philadelphia’s population died in the first month of the outbreak. It was law makers that put and end to the squabbling and forced the medical community to get back to work being doctors. This repeats itself with Typhus, Typhoid and right up to the current HIV/AIDs crisis. It is also playing itself out with Lyme. Now enough of the fighting. The medical community agrees on some core points. 1. Lyme in the US is on the rise AND is epidemic unlike HIV in the US which is on the decline but also epidemic. 2. Lyme is treated with the antibiotic Doxycycline. The only thing we are fighting for or over is – 1.a test that is more than 12% to 35% accurate and 2. Treatment protocols that differentiate between and new Lyme patients, and late diagnosis treatments, and a patient with failed treatments. IDSA is quite clear that its protocol does not apply to late diagnosis or failed treatment and only applies to new cases. They where very clear that there was not enough evidence to support a protocol for late diagnosis or failed treatment. This issue is that Blue Cross – Blue Shield adopted the IDSA guidelines wholesale across the board as a one size fits all solution. The Blue Cross and IDSA trains collide when we learn that the IDSA 2006 guideline panelists where on the Blue Cross payroll and some held interest in the Western Blot Tests. This was also the subject of a General Accounting Office (GAO) investigation of the CDC requirement to use the Western Blot Test. That is anti-trust plain and simple. It’s the same law that all of us abide by everyday.
Anonymous
An ID RN, MSN, Some very good posts.
Many Drs. lack critical thinking skills. English majors that get into medicine. They are very good at memorizing data but do not know how to analyze what they learn. Engineers and physicists would make better MDs.
This type of denial has gone on for years and not just in medicine.
About 100 year ago, a famous scientist at the Paris Science Exposition proclaimed that man now knew everything there was to know and there was nothing left to invent. This was before discovery of the Atom, radio etc……..
Myopic views are par for the course. Even when something seems simple to understand such as a persistent infection will elude people who proclomate instead of investigating.
The first GPS satellites did not compensate for effects of relativity. They did not believe that time ticks slower on the earth vs space. This is how many years after Einstein? Well the GPS broke down in hours because the clocks on the satellites were going faster than the clocks on earth. It cost them a bundle and now they all have clocks adjusted for it.
They were ignorant just as these Drs. are.
Lyme has been around since 1975 and is still poorly understood. Even when it is fully understood there will still be Drs. that say that it can’t be chronic. It will take some time for this to be sorted out. In the end you will be proven correct just like Albert was.
Joanne
please…. I know my body and all this objective and clinical mumbo jumbo does nothing to solve the issue. WE with Chronic Lyme are being ignored and treated as if we are CRAZY. and in many cased even being told so. my experience of over 19 yrs and counting is that most drs don’t want to treat something so insidious. they are cowards and make excuses rather than truly try to help their patients. OH its…menopause…or maybe a fungal infection and on and on…not even the recent graduate from the ID school are willing to dive in and help those of use who are suffering so much. its..appalling for me to listen to those who THINK they know…which includes most MDs I have encountered….THEY ARE NOT ONLY WRONG BUT MISDIAGNOSING AT A RATE THAT IS ABSURD!!! the sad fact is that MOST patients, like myself at one time, believe them….I pray that common sense and a little humility will enable drs to look beyond their prejudices and beliefs and start to really help those of us who suffer daily, yearly and moment by moment..

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