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» LymeNet Flash » Questions and Discussion » Medical Questions » Post-treatment Lyme Disease Syndrome

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Author Topic: Post-treatment Lyme Disease Syndrome
jimw
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I am looking for information as to when this phrase 'Post-treatment Lyme Disease Syndrome', or 'Post Lyme Disease Syndrome' were first mentioned and by who.

Anyone?


Posts: 144 | From British Columbia | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
lymie tony z
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In as much as the "Steeres" camp or side of this controversy does'nt believe there is such a thing as chronic or "persistant/resistant lyme infection"...I would venture a guess that they are responsible for this falsehood....

Too bad none of them have gotten this sick for sooo long...perhaps they would change their tune......................zman


Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
duramater
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Hi Jimw:

Hun, never thought about who came up with that phrase! I put that into medline and sorted by date and here's a link to the paper that came up. I don't know if it indicated who coined the phrase exactly, but it was the first paper that used the term "post lyme syndrome." I know it has other names too, but this is the one I checked out.

What is odd is that this is one of the places that I got some pretty good treatment a long time ago. I guess different departments have different philosophies!

Hope this helps your quest.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=8856619


Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
minoucat
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Ah, them's fightin' words.

But I see you're from CanLyme -- what a terrific site that is. So you must be an OK guy.

Interesting to note that in Pub Med there are 19 returns on PLDS, 3 returns on P-TLDS, and 6482 on "Lyme Disease".

Found these. PTLDS/PLDS is not specifically mentioned in the abstracts, but the concept is clearly there. The phrase itself may be in the paper, dunno.

Scand J Infect Dis Suppl. 1991;77:143-4. Related Articles, Links

Antibiotic susceptibility of Borrelia burgdorferi in vitro and in animal models.

Wretlind B, Johnson RC, Hansen K, Preac-Mursic V.

Department of Clinical Bacteriology, Danderyd Hospital, Sweden.

The development of a rational antibiotic therapy for Lyme borreliosis has been hampered by the lack of reliable microbiologic or serologic criteria for diagnosis or cure. In studies of the treatment, the clinical response, has been used as the primary indicator of efficacy. Studies often differ in their criteria for a successful outcome, and it is not clear whether persistent symptoms are due to incomplete eradication of the pathogen, to a post-infectious syndrome, or to erroneous diagnosis in the first place. Thus, laboratory experiments are needed as a complement to clinical trials.

++++++++++++++++++

Current recommendations for the treatment of Lyme disease. 1992

Sigal LH.

Lyme Disease Center, Robert Wood Johnson Medical School, University of Medicine and Dentistry of New Jersey, New Brunswick.

Lyme disease is a multisystem inflammatory disease caused by infection with Borrelia burgdorferi. Soon after the tick bite which transmits the infection, the pathognomonic skin rash erythema chronicum migrans occurs in 50 to 70% of patients, often with associated symptoms resembling a 'summer cold' or viral infection. Therapy for this stage of disease consists of 3 to 4 weeks of oral therapy. The agents currently used are: amoxicillin (500 mg 3 or 4 times daily) with or without probenecid 500 mg 3 times daily, doxycycline (100 mg twice daily), or tetracycline (500 mg 4 times daily). Longer duration therapy has never been evaluated and therefore is not currently indicated. Even patients with severe early manifestations of Lyme disease should be treated orally. Later features of Lyme disease include carditis and neurological disease, which can occur days to approximately 9 months after the onset of illness, and arthritis and neurological disease which can occur weeks to years after the onset of the illness. Treatment at this stage is with 2 to 3 weeks of intravenous antibiotics, currently cefotaxime (3 g every 12 hours), ceftriaxone (1 g every 12 hours or 2 g every day) and benzylpenicillin (14 g in divided doses). There is no evidence that longer duration therapy is indicated or more efficacious. The exception to this suggestion is the patient with isolated facial seventh cranial nerve palsy; if such a patient has no other signs or symptoms to suggest Lyme disease and has normal spinal fluid, oral therapy is usually sufficient, although some physicians will give concomitant corticosteroids to hasten the resolution of the palsy. Of major consequence to the practitioner and patient is the possibility that persistent symptoms (e.g. fibromyalgia) may be caused by a process which is no longer antibiotic-sensitive. Special care in the management of so-called 'chronic Lyme disease' is crucial lest the clinician prescribes prolonged or unending courses of antibiotics for such noninfectious problems.

Publication Types:

* Review
* Review, Tutorial


++++++++++++++++++

Clin Dermatol. 1993 Jul-Sep;11(3):393-400. Related Articles, Links

Neurologic manifestations in Lyme borreliosis.

Kristoferitsch W.

Department of Neurology, SMZ-OST Krankenhaus, Vienna, Austria.

Publication Types:

* Review
* Review, Tutorial


PMID: 8221521 [PubMed - indexed for MEDLINE] (no abstract, but returned on the phrase Post Lyme Disease Syndrome)

+++++++++++++++++++++++++++++++

Check out Steere's references in the article at this link http://www.biomedcentral.com/content/pdf/cto-id3112.pdf

The references are probably not online (either because they're in book form, or it's so early in internet history) but some of the topics are fascinating and there are references to PLDS, but I don't know if that term is used in the articles themselves. The references include:

Further research on the post-Lyme disease syndrome casts some light on long-term cognitive dysfunction in these patients.
32. Shadick N, Phillips C, Logigian E, et al.: The longterm clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern
Med 1994, 121:560-567.
33. Sigal L: Persisting complaints of Lyme disease: a conceptual review. Am J Med 1994, 96:365-374


OK, now I'm PO'd. I should'nt research stuff like this when I have insomnia, I'll never get to sleep.

[This message has been edited by minoucat (edited 30 January 2005).]


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jimw
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Thanks

I had most of those references but still can't seem to come up with who first decided there is such a syndrome and what research they used to back it up.

I'm trying to do a piece on PTLDS for our website called:

"The invention of a syndrome...'Post Treatment Lyme Disease Syndrome, Fact or Fiction'".

I seen C. O'brien did an artcle called 'Post Lyme Disease Syndrome Under Trial' in Molecular Medicine Today 1996. (Mol Med Today. 1996 Oct;2(10):407)

I can't find the article and the journal has changed names to Trends In Molecular Medicne.

If anyone knows where to locate this article please let me know.


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Foggy
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Post Treatment Lyme Disease Syndrome = " Somatic"
http://umg.umdnj.edu/public/directory/medicine/rheum/ldc.asp

[This message has been edited by Foggy (edited 30 January 2005).]


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jimw
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Foggy

What is the connection? We know where Sigal sits.


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caat
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Steere and Sigal. Don't know exactly when or where, but it's basically an interpretation of "autoimmune process". Molecular suicide in the absence of pathogens. Supposedly they came up with the idea, but I suspect it's very likely they stole it from someone else and gave it a very new interpretation. After all, it's yale... look at all the wonderful things yale has given US...

They are responsible in great part for attributing the "autoimmune syndrome" explaination for lyme, MS and I beleive lupus. They probley would have assigned AIDs to it also, but they just weren't quick enough.

I beleive it was Steere who first came up with the catchy words 'Post-treatment Lyme Syndrome'. Try his articles right around the time he wrote that well distributed spin that lyme was being overdiagnosed- in the late 80's or early 90's I think.


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bpeck
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There have actually been some abstracts pulled from PUBMED on Lyme..

You could spend your life researching this stuff.

Post Lyme syndrome is pretty well accepted by most conventional Docs now (and I certainly don't agree with the theory).

To really get all the inof you want, you'd have to back prior to 1996.. alot of this is rolled up with the vaccine controversy, and the insurance companies, and a few of the top Lyme specialists in the country (connected to some top Universities), the ensuing lawsuits over the vaccine, and the lack of the researchers being able to interpret the western blots of POST vacinnation.

Do a search on Paul Fawcett.. he has the best paper on post vaccine western blots.

It really is a BIG *@#ing mess.

Barb


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Kara Tyson
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Lyme was not the first disease to have to deal with the "post syndrome".

Polio was the first. People who were not cured of Polio were told that they were cured but had Post Polio Syndrome.


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Foggy
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Call it whatever you want, but until they have an more efficacious treatment regimen for our chronic symptoms, abx is all we have.

I'd prefer to see taxpayer $ spent on research for more efficacious therapies, not on disproving exisiting therapies.


Posts: 2451 | From Lyme Central | Registered: Aug 2001  |  IP: Logged | Report this post to a Moderator
   

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