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» LymeNet Flash » Questions and Discussion » Medical Questions » getting meds

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Author Topic: getting meds
jsturner
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Member # 20874

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I am scheduled to see a LLMD in September...good

news...However, my primary care doc thinks that

the 30 days of abx he gave me (doxy 200mg/day)

was overkill. I have been off them since July 23

and I am not doing well physically. Can anyone

think of any way I can convince him for at least

a couple more weeks of abx. He definitely goes

by IDSA guidelines and thought when I was herxing

that I had a tough of the flu. I don't know if

the ER would give me any since it's not an

"emergency" and I have a doctor already. My LLMD

wants me to try to convince him somehow to get me

through until my appt with him. Thanks everyone...I just don't know what to do.

Posts: 23 | From Southern Maine | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
LymeLearned
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Member # 20565

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Here's what I did that convinced a Kaiser doc, no less-to extend treatment. I printed out the following, and gave it to him:


1-Flawed Treatment Guidelines for Lyme disease:
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

2-Unbiased Older Science:
I'll paste this page in after this reply-it's long and I can't attach it.

3-New Law Protects Doctors (even in states that don't have it yet, it could give him the guts to to follow his conscience:
http://www.ct.gov/dph/cwp/view.asp?A=3659&Q=443628

4-Pandemic Infectious Disease Warning:
http://www.21stcenturysciencetech.com/Articles_2009/Lyme%20Pandemic.pdf

5-80% of confirmed Lyme patients do not recall bite: http://opa.yale.edu/news/article.aspx?id=3278

6-Clearinghouse Guidelines: http://www.guideline.gov/summary/summary.aspx?doc_id=4836&nbr=3481&string=lyme

7-Antibiotics Interfere with Test Results (top of page two):
http://www.labtestsonline.org/understanding/analytes/lyme/test.html

8- ANY PHOTOS YOU if you have them- of your ticks, rashes, etc.

9-Lab Report verifying Lyme-if you have one. In my case-I had a lab result for the ticks I pulled out! It worked.

10-Hearing notice for IDSA:
http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974


I provided this stack of evidence along with a formal letter containing my plea for longer treatment for my daughter. She got two more weeks.

Still, it remains to be seen whether she's had enough. In this case, I was exposed outside for 10 mins. where she played all day without showing any indisputable signs of Lyme or a tick.


Anyway, if this convinced a Kaiser doc (the most conservative of them), then it could help bring others around, unless you are up against one who's extremely rigid. Best of luck, and the unbiased science page is below.

--------------------
"SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:

http://www.youtube.com/TickedOffLiterally

Posts: 183 | From USA | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
LymeLearned
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Member # 20565

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PLEASE...Don't take MY word for this. LOOK up in every single study in these Medical Research Publications, contributed by These *same* scientists and written BEFORE they became financially invested in creating flawed, "CHEAP but Ineffective" treatment guidelines for Lyme disease. The chronic effects of this infection have been well established.


In 1992 and 1993, IDSA author Dr. Mark Klempner published two studies in the Journal of Infectious Diseases documenting how Lyme "spirochetes can survive antibiotic treatment through intracellular sequestion within fibroblasts" making them "among the small number of bacteria that can cause chronic infection by localizing within host cells where they remain sequestered from some antimicrobial agents"
***Journal of Infectious Diseases(1993; 167:1074-1081).


Or as he stated in the same journal"The Lyme disease spirochete . . . can be recovered long after initial infection, even from antibiotic-treated patients, indicating that it resists eradication by host defense mechanisms and antibiotics . . . several eukaryotic cell types provide the Lyme disease spirochete with a protective environment contributing to its long-term survival".
(1992; 166(2):440-4).


Likewise, Dr. Raymond Dattwyler proclaimed in Reviews of Infectious Diseases 1989, 11(6)S6; S1494-8, "Lyme borreliosis is a chronic infectious disease caused by the spirochete Borrelia burgdorferi . . . They [Lyme spirochetes] have been demonstrated in tissues obtained from individuals with high levels of antiborrelial antibodies, a finding that indicates the presence of immunity alone does not guarantee eradication of this organism."

***In a New England Journal of Medicine study, Drs. Dattwyler and John Halperin (also of the IDSA) "studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed." These "chronic Lyme" patients tested negative on currently-available blood tests: "Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunoflourescence assay . . . We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease."

Dattwyler RJ; Volkman DJ; Luft BJ; Halperin JJ; Thomas J; Golightly MG. Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi. New England Journal of Medicine 1988, 319(22):1441-6
A year earlier these same two researchers reported on "the clinical courses of 5 patients with Lyme disease who developed significant late complications, despite receiving tetracycline early in the course of their illness. All 5 patients had been treated for erythema chronicum migrans with a course of tetracycline that met or exceeded current recommendations" (Failure of tetracycline therapy in early Lyme disease. Arthritis & Rheumatism 1987, 30:448-450.) In 1993, Dr. Halperin co-authored an article entitled �Recurrent erythema migrans despite extended antibiotic treatment with minocycline in a patient with persisting Borrelia burgdorferi infection� in the Journal of the American Academy of Dermatology, 28(2 Pt 2):312-4.

The title says it all: Even �persisting Borrelia burgdorferi infections� can occur, with manifestations as odd as a recurrent bull�s-eye rash (erythema migrans).

Or as Dr. Halperin wrote in Neurology in 1992 ((42):43-50), "In many instances continued infection appears to be essential for symptoms to persist, no matter how small the number of organisms, as antimicrobial therapy is generally followed by clinical improvement." Or as Gerold Stanek (also of IDSA) put it in the British Journal of Dermatology in 2001, "The relapses she repeatedly suffered despite initially successful antibiotic treatment could be related to the observation that Borrelia [the Lyme disease bacteria] may possibly be able to remain dormant in certain tissue compartments, thus escaping bactericidal antibiotic activity" (144(2):387-392).

Or as Allan Steere, guru of IDSA on Lyme, told the American Journal of Medicine in 1995 (88:4A-44S-51S), "Similarly [as in tertiary syphilis or tuberculoid leprosy], the antigenic stimulus in Lyme arthritis would appear to be a small number of live spirochetes, demonstrated here by monoclonal antibodies, which may persist in the synovial lesion for years (p.494)".

Or as Dr. Steere, wrote in the New England Journal of Medicine (1990 Nov 22; 323(21):1438-44), "The likely reason for relapse is failure to eradicate the spirochete . . . This last article is one of many studies that show continuing symptoms are most likely due to persistence of the spirochete [type of Lyme bacteria]."


Indeed, many articles have been published before AND since 1990 demonstrating the possible persistence of Lyme infection in antibiotic-treated patients. These studies have been written by members of the IDSA Lyme "team" and many other reputable scientists. And they are among the 98% of available literature on Lyme not cited in the IDSA�s newest treatment guidelines! Who will hold them responsible?

--------------------
"SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:

http://www.youtube.com/TickedOffLiterally

Posts: 183 | From USA | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
LymeLearned
LymeNet Contributor
Member # 20565

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It's not broken up for neuro-Lyme (sorry) because it's for the doc, and it would be extremely long if I did that.

If you can highlight, copy, and then paste it into a word doc, OR the body of an email that you send to yourself, you can choose how you want to print it for the doc.

I can't imagine how ANY doc with a conscience and and half a brain could refuse a patient after reading this, but there ARE a lot of docs full of EGO...and those are the culprits holding us back, even causing great harm. I pray you have one the former.

--------------------
"SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:

http://www.youtube.com/TickedOffLiterally

Posts: 183 | From USA | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
   

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