(couldn't post actual link because of "parenthesis in html tag", the previous in continuity is the full link address )
Chronic Lyme Disease: A Review
Adriana Marques MD, Laboratory of Clinical Infectious Diseases, National Institute of Allergy and Infectious Diseases, National Institutes of Health, 10/11N234 10 Center Drive, Bethesda, MD 20892, USA
Available online 29 April 2008.
Studies have shown that most patients diagnosed with chronic Lyme disease either have no objective evidence of previous or current infection with Borrelia burgdorferi or are patients who should be classified as having post-Lyme disease syndrome, which is defined as continuing or relapsing nonspecific symptoms (such as fatigue, musculoskeletal pain, and cognitive complaints) in a patient previously treated for Lyme disease.
Despite extensive study, there is currently no clear evidence that post-Lyme disease syndrome is caused by persistent infection with B burgdorferi.
Four randomized placebo-controlled studies have shown that antibiotic therapy offers no sustained benefit to patients who have post-Lyme disease syndrome. ( WHAT?!!!! That's not what I've heard. I'd like to see the sources backing this statement)
These studies also showed a substantial placebo effect and a significant risk of treatment-related adverse events.
Further research to elucidate the mechanisms underlying persistent symptoms after Lyme disease and controlled trials of new approaches to the treatment and management of these patients are needed.
Article Outline
Chronic Lyme disease Post-Lyme disease syndrome
The possible causes of post-Lyme disease symptoms Studies of antibiotic treatment in post-Lyme disease syndrome
Summary References
Table 1.
Experience of referral centers with patients suspected of Lyme disease
Table 2.
Symptoms after antibiotic therapy in patients with erythema migrans
Table 3.
Placebo-controlled, double-blinded randomized treatment studies in post-Lyme disease syndrome
Abbreviations: IV, intravenous; SF-36, Medical Outcomes Study 36-item Short-Form General Health Survey.
Infectious Disease Clinics of North America Volume 22, Issue 2, June 2008, Pages 341-360 Tick-borne Diseases, Part I: Lyme Disease
[ 02. May 2008, 03:20 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Oh this is just utter crap - this, people, is exactly how they are going to win - by defining us out of existence.
Please, I really wish every one of us would write to the editor of this journal and author of this piece.
And don't tell them a bunch of emotional stuff, just tell them that there is plenty of sound scientific evidence of persistant infection and that pieces like this will only contribute to patient suffering.
We have to take a stand against this publishing mania or we are in trouble. Write the journal, complain, scientists are just people, and they can be talked to. Sheeeeeesh Posts: 194 | Registered: Jul 2005
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This is IDSA hogwash.
Posts: 98 | From BC | Registered: Feb 2005
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Can we go even more on the offensive, such as write an article and get it published. I agree it should highlight the science, such as a recent study found mice retained lyme despite the IDSA prescribe abx. We could add Atty. Gen. Blumenthals discourse on the IDSA and their conflict of interest. It seems like we have weapons, how do we get it to the media?
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Greatcod
Unregistered
posted
Well its all very tricky business. Technically, they guy is right. The few published double blinded studies, especially Klempner's, show no improvement after relatively short term (1-2 month)treatement. I don't believe there are any published double blinded studies showing improvemet or remission with 6 or more months treatment. The evidence for effective long term treatment is largely anecdotal--ILADS doctors have positve results in tns of thousands of cases, but they were not studies--again ancedotal. I have been trying to come up with the significant anecdotal evidence of success numbers, but no one, not ILADS or the LDA, has bothered to accumulate it. It is there, it is overwhelming, but the numbers have not been put together. So they beat us to death with Klempner. It is rather pathetic actually that the anecdotal numbers have not been accumulated. Only DR. D published a study, not double blinded, where he claimed 80% cured or signicantly improved. So the "science" is on there side, the experiental evidence on ours. As far as the comntinuing infection in animals, the IDSA argues that the volumne of the remaing spirochetes is too small to cause damage. I don't know how anyone measures that.
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
4 studies? I thought they only had 2 on relatively short-term IV Ceftriaxone (was it 12 weeks?). I must have missed a couple of recent ones, I guess.
Maybe it's just my present state of brain fog.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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adamm
Unregistered
posted
Or maybe it's their present state of lying through their teeth.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Klempner's study, 2001 -- selected patients who had already failed 30 days of IV ceftriaxone and gave them 30 days of IV ceftriaxone plus 60 days of oral doxycycline. They failed again.
Krupp's study, 2003 -- (abstract only) selected patients who still had severe fatigue and cognitive problems and gave them 28 days of IV ceftriaxone. Fatigue improved, cognitive problems did not in the long term, therefore he felt that IV was too dangerous for the results obtained.
Fallon's study, 2007 -- (abstract only) selected patients with severe fatigue, pain, and cognitive symptoms, and former treatment failure (30 days of IV), gave them 100 days of IV. Short-term improvement in cognition was observed after treatment, but it was not sustained over the long term. Pain and physical function did remain improved over the long term.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
NIH has consistently failed to do honest science in lyme disease. This latest article is just one in a long string of lies and malfeasance. I hope that the whole Bethesda campus is not doing business this way. Just think, there are 18,000 NIHers there. Our govt is costing a lot for public health. Are we getting our money's worth?
I personally blame Tony Fauci who is rolling in money because of AIDS (which they haven't cured or found a vaccine for) and biowarfare (to defend us against terrorists, when the only bio incident was probably caused by a govt scientist smuggling out some anthrax and mailing it.)
Posts: 8430 | From Not available | Registered: Oct 2000
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Greatcod
Unregistered
posted
Here's one more that IDSA cites. I think the only people who even read the Lyme literature are a few researchers and lots of Lymies.
34. Kaplan RF, Trevino RP, Johnson GP, et al. Cognitive function in post-treatment Lyme disease: do additional antibiotics help? Neurology 2003;60:1916-1922. [Free Full Text]
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posted
Yes, we can write an article, or many articles, but no mainstream journal will touch them while this 'no chronic Lyme' nonsense is still in vogue. We've got to reach these journal editors and ask them to re-review or referee their articles.
For instance, they love to say that "no placebo controlled study found benefit to long term abx" - but that's simply not true. Of the four studies, three of them show improvement in pain and fatigue. HOW is that 'no benefit'?
We HAVE to fight back against publishing bogus science. We need to rebutt and refute these articles - and I am not above threatening legal action against these journals for publishing pure b.s., either. Sorry, but scientific malfeasance makes me maaaaaaadddddddddddddd. Posts: 194 | Registered: Jul 2005
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posted
These type of studies make me cry. And make me mad, since I'm too Lyme fogged to read & understand them to tear them apart.
But, as someone who's had Lyme for years (even despite treatment) it makes me crazy to see "science" disproving my reality. Are there any studies out there or in the works that will show our side?
Posts: 168 | From Delaware | Registered: Aug 2005
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bettyg
Unregistered
posted
ali, thx for finding this and posting for us all.
surely several of our members have access to the full article as you requested...please post it IF you do; we thank you!
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posted
What those studies proved was that lyme is chronic and the optimum treatment not yet known, however patients who are on longterm treatment to improve quality of life do improve for the most part. And some reach remission. No study yet that builds on clinical experience.
Basically we are being punished twice. First they fail to diagnose it early, then they refuse treatment that will help most chronic cases. This is a medical disaster and a failure. And there must be a lot of ignorant/arrogant/greedy people in medicine for a thing like this to go on for so long. And it aint the only one....look at autism, etc.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
why cant we appeal to ILADS and go through them to the LLMD's and generate the numbers? They are the direct link!
Guys - this CAN be done - simply need to REDIRECT efforts - instead of griping about it all - send requests to ILADS and directly to your own LLMD. FLOOD THEM ALL AND DONT STOP!
Each LLMD has administrative employees. It CAN be done! And it can be done timely if began today!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Wonder if the worm,thought he only had PLS,If he would take a steriod shot.
What is there stance on this? I know many who had plenty of treatment according to there guidlines,got a steriod shot,and got seriously worse,1 even died a few months later.
How do they explain this? And twitches which are something that is irritating the nervous system.
Been doing great...HOMEmade colloidal silver. Watch the coloidal silver videos on youtube. You can even learn to make it there. ONLY take homemade silver. Arteminisinin...and Adriographis
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
cj- I do believe that Dr.B HAS implemented a data collection system with the ILADS LLMDs. I believe he is compiling Sx/Tx response data.
I'm not sure when he started compiling it though. It would be wonderful if he could publish something about the compilation WHILE this review process is going on. Perhaps even better, present the info at the IDSA internet live broadcast hearings!!!!!
Now THAT would be something worth watching!!!!!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Greatcod
Unregistered
posted
I couldn't agree more..I feel it would make a major difference in how the Lyme treatment dispute is resolved.
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jamescase20
Unregistered
posted
Lou you sure are right. I think really what this is showing is that our govt is sold to the highest bidder. Note, Aids also suffered things strongly related to lyme, and aids and lyme both came about around the same time period. I think we have been sold.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Greatcod, thanks for the 4th study.
Ali, I believe Dr. B just got started last fall, because he was recruiting docs at the last ILADS conference.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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thanks for link on the 'worm' anguis in herba-snake in the grass...will read another day, but for now, for 'dirt ,on the worm, see kathleen dicksons website http://www.actionlyme.org, and her yahoo group, ''scilyme2; it'll take some time, but stuff of real import, taht prosecutors can use.
be well,
C.
-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
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