"We learn something every day, and lots of times it's that what we learned the day before was wrong." (Bill Vaughan)

2008 UPDATE: DR. BURRASCANO'S GUIDELINES: http://www.lymediseaseresource.com/BurrGuide2008.pdf

To start, I really think that is a perfect statement summing up what most of us have found along our way, trying to get ourselves or our loved ones better... and certainly holds true in science/medicine!

Most all of these websites have good info about the variability of symptoms of Lyme & Co (standing for co-infections, which are numerous) with inclusive lists, along with info about how to treat, etc...

more than you ever knew you wanted to know, actually!

www.ilads.org/ in particular is the "flagship", to so speak, for information on treating for physicians and patients and represents the mainstream LLMDs' treatment protocol(s).

Here's also a partial list of reputable internet sites for info. There is info about how to treat properly here that you can print out and educate yourself and hopefully an open-minded doctor.

Again, don't forget that with lyme, there are probable co-infections such as bartonella, babesia, and ehrlichiosis and others which need to be considered and a trial treatment given depending on how one responds to treatment for lyme (tests for these are less than even 50% reliable). Ticks are dirty critters! And then one also has to consider opportunistic co-infections.

------------------- International Lyme and Associated Diseases Society/ILADS www.ilads.org ------------------- ILADS, Inc. is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

------------------- Lyme Disease Association, Inc. www.LymeDiseaseAssociation.org ------------------- The Lyme Disease Association is a national non-profit organization which is dedicated to Lyme disease education, prevention, and raising research dollars. They have funded dozens of research projects coast to coast, sponsor an annual national medical conference and have become affiliated with several other organizations across the country to coordinate their efforts.

------------------- Lyme Disease Foundation, Inc. www.lyme.org/ ------------------- Another national non-profit dedicated to finding solutions for tick-borne disorders. Founded in 1988, The Lyme Disease Foundation publishes the Journal of Spirochetal and Tick-Borne Diseases (JSTD), the first peer-reviewed scientific publication dedicated to tick-borne and spirochetal disorders.

------------------- Lyme Disease Info Net www.lymeinfo.net/ ------------------- A comprehensive online directory providing information on Lyme disease and other tick-borne diseases including medical literature summaries, Lyme advocacy, and complementary treatment information. The recent update is well worth another look.

------------------- Turn The Corner Foundation (New York, NY) www.turnthecorner.org/lyme-guidelines.htm ------------------- Turn the Corner is a foundation that is dedicated to the support of research, education, awareness and innovative treatments for Lyme Disease and other tick-borne diseases.

------------------- Lyme Disease Network www.lymenet.org/ ------------------- The Lyme Disease Network has been on the internet since 1994. They are a non-profit foundation dedicated to public education of the prevention and treatment of Lyme disease and other tick-borne illnesses. Here you can find news, an array of information resources from legal to medical, and the highly recommended flash discussion groups, where moderated chat groups talk about everything from Medical Questions and Looking for a Doctor to General Support and Activism.

------------------- Columbia University Lyme Disease Research www.columbia-lyme.org ------------------- Established in 1994, the Lyme Disease Research Program of the New York State Psychiatric Institute is the first in the United States to focus research efforts on the neuropsychiatric aspects of Chronic Lyme Disease in adults and children. Here you will find info on recent, current, and upcoming research studies on Lyme disease conducted in colloboration with their neighbors at Columbia Presbyterian Hospital. Most of the doctors researching Lyme here are on the faculty of the medical school of Columbia University.

------------------- Hope To Heal Lyme www.hopetoheallyme.com ------------------- Their Mission is to produce events that offer an integrative approach to healing Lyme disease. The integrative approach includes introducing expertise from Medical, Allopathic, Naturopathic, Complimentary and Holistic protocols. These events are designed to address issues of Lyme disease patients and their caregivers. The events are held in Lyme endemic areas of the United States and Canada.

And a very good site is the Canadian Lyme Association's, regardless of whether you're in US, Canada, or elsewhere ------------------- Canadian Lyme Association: www.canlyme.com/ -------------------

Now--- FOR ALTERNATIVE TREATMENTS to taking antibiotics etc:

------------------- http://lymecommunity.com -------------------

------------------- http://www.neuraltherapy.com/articlesProtocols.asp ------------------- this is an interesting place, includes lyme amongst other things:

------------------- http://www.lymeinfo.net/alt.html -------------------



There is so much more, I'm sure others will be able to add to this! And in closing, all I have to say is: DIE LYME DIE!!!!

all the best, Victoria



<br><br>[<i>This Message was Edited on 11/09/2008</i>]

[This Message was Edited on 01/07/2009]

I missed reading about this here at prohealth...

----------------- http://www.lyme-disease-research-database.com/lyme_disease_newsletter.html ----------------- Lyme Disease Research Database Site Offers Expert Audio Interviews, Free Newsletter (ImmuneSupport.com12-31-2006) The Lyme Disease Research Database (LDRD) Web site is offering a new series of audio interviews with top Lyme-expert physicians and researchers, featuring the latest on Lyme diagnosis and treatment as well as prevention.

In addition to these interviews, the site offers articles, research updates, news, Lyme patient “success stories,” and more. You can sign up to be a member and receive the e-newsletter at no charge - but access to the audio interviews and some other resources on the site seems to require a donation.

(I just signed up for this, so don't know yet if anything does require a donation or what.)

----------------- http://www.publichealthalert.org/ ----------------- Public Health Alert Newsletter: Investigating Lyme Disease & Chronic Illness Throughout the U.S.A "Educating the public and medical professionals on health issues that matter... If you don't know your options, you don't have any."

This comes out monthly and is free to read online (past issues are available online too), and has a lot of info on alternatives to abx plus the LLMD's views such as Dr. Joseph Burrascano, etc., plus ads.




[This Message was Edited on 03/01/2008]

Symptoms: http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

Reprint of article that appeared in 2004 in the CFIDS Journal about the overlap between CFIDS, Fibro, and Lyme/co-infections:

http://www.anapsid.org/cnd/diagnosis/lyme-and-cfids.html

Any chance this could be made a 'sticky' so it will remain at the top of the page?

Chronic Lyme: An Evidence-Based Review by Stephen Phillips, MD

At the link below, you can find a 40 slide presentation Dr. Phillips of The International Lyme and Associated Diseases Society (ILADS) is sharing with anyone requiring documentation of the existence of chronic Lyme disease.

It can be printed out to take to your doctor and/or read at your leisure as well.

http://www.ilads.org/Presentation_ChronicLyme.html

ALSO a good article is Dr. Stricker's counterpoint to the IDSA's position, found here:

http://www.ilads.org/files/press_release_7_15_07.pdf

http://betterhealthguy.com/

lots of links for different things including lyme

The site that really helped me go on to get a diagnosis was truthaboutlymedisease.com -- under their resources page, it has the article "when to suspect Lyme" which is what made me get tested. I have given that article to several people who have been diagnosed with fibromyalgia that seem to have something else going on as well. Without it, I'd still be sitting here taking pain meds doing nothing to get well.

I'm going to copy the sites you have provided! Foggyfroggy,

I think we can keep this at the top by "bumping" it when

necessary.

Huggles, MRDAD

There was an article written at Science Line http://scienceline.org/2007/07/30/ask-webster-lymetests/

The article is not very good, but the comments below by Kathleen M. Dickson are excellent: ---------

This is false. (referring to info in the article at above website)

There are far more false negatives, because even according to Allen Steere, only the people with Lyme arthritis will test positive, and that is a small percentage of the population.

According to Allen Steere and the CT Ag Station, perform only a Western Blot (NEVER and ELISA), and if you have band 41 and no periodontal disease, syphilis, or obvious arthritis, you have Lyme Disease.

This is why there is a controversy, and why the CT Attorney General is suing the Infectious Diseases Society of America- RESEARCH FRAUD.

The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and they do not have severe periodontal disease or syphilis, they have Lyme borreliosis: http://www.pubmedcentral.nih.g.....obtype=pdf (sorry, my computer is freezing and I can't get the full pdf url so go to first link above & look at link in her comment)

1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: ” Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,” since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means “the spirochete remains alive throughout the illness.”

In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.

2) Yale and CT Agricultural experiment Station- the full pdf: http://www.pubmedcentral.nih.g.....id=8788993 (again, please refer to article at the 1st link as my computer's not being cooperative in downloading the pdf so i can get full url)

Use of recombinant antigens of Borrelia burgdorferi in serologic tests for diagnosis of lyme borreliosis. Magnarelli LA, Fikrig E, Padula SJ, Anderson JF, Flavell RA. Department of Entomology, Connecticut Agricultural Experiment Station, New Haven 06504, USA.

Recombinant antigens of outer surface proteins (Osps) OspA, OspB, OspC, OspE, and OspF of Borrelia burgdorferi sensu stricto and of p41-G, an antigenic region of flagellin of this spirochete, were tested with human sera in class-specific and polyvalent enzyme-linked immunosorbent assays (ELISAs).

In analyses for immunoglobulin M (IgM) antibodies, 18 (85.7%) of 21 serum samples from persons who had been diagnosed as having Lyme borreliosis on the basis of the presence of erythema migrans reacted positively in ELISAs with one or more Osp antigens or the p41-G antigen. Eleven serum samples contained antibodies to OspC antigen, and of these, six also reacted to the p41-G antigen and to one or more of the other recombinant antigens.

The remaining five serum samples reacted solely to OspC (n = 4) or to OspC plus OspA and OspE without reactivity to p41-G (n = 1). In analyses for IgG antibodies, seropositivity was comparable to that of IgM analyses and was marked by predominant reactivity to p41-G, OspC, and OspF. Similarly, all 21 serum samples were positive in polyvalent and class-specific ELISAs with whole-cell B. burgdorferi.

Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections. PMID: 8788993 [PubMed - indexed for MEDLINE]

Kathleen M. Dickson ActionLyme.org Former Analytical Chemist for Pfizer

---------------

http://www.ilads.org/burrascano_0905.html


[This Message was Edited on 05/08/2008]

here's an online support group for those following Buhner's Herbal Protocol:

http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/

One person's success story: http://www.lymediseaseresource.com/wordpress/one-success-with-the-buhner-protocol/

ALSO-- a page with a lot of interesting looking links:

http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html

Those on the Rife and Lyme yahoo list are seemingly finding good results with using MMS drops first, before rifing, altho it needs to be used with caution as it may cause a herx. Chronic Lyme pts are cautioned to start with only 1 drop, not the 2 drops normally recommended. Waynesrhythm has also talked about this on the main board as well: miraclemineral.org/

My son is trying it right now... will let you know what happens (my son is between pulses of abx right now). So far it seems my son is feeling better from it, which means maybe right now at least the lyme/etc isn't very active &/or not much left (keeping my fingers crossed).

all the best, Victoria







<br>[<i>This Message was Edited on 05/10/2008</i>]

[This Message was Edited on 07/17/2009]

This lady is coming out with a book in a few weeks, it sounds like it will be good. This website is her blog plus a blurb about the book: http://lymebytes.blogspot.com/

And here is a website for Dr. Zhang who does a Traditional chinese Medicine approach: http://www.sinomedresearch.org

I have been reading posts for awhile now, but had to finally post because I saw this. I agree - www.truthaboutlymedisease.com is the best site I found. Easy to understand. Their recent new video helped me the most, also under Resources.

Also, I clicked on the Forum link and it takes you to the Board Index, where they have newbie info, LLMD info and about 90 subjects under "Everything you need to know about tick borne disease"..there really is every subject known about LD there and many LD videos! I have read some forum links, they sound like a sweet (possibly Christian?) group there.

This is a great / helpful thread, good idea, very nice!
[This Message was Edited on 05/28/2008]
[This Message was Edited on 05/28/2008]

you're welcome...

Just wanted to add, apparently as of today or yesterday, the yahoo lyme-and-rife list now has their own message board, at lyme-and-rife.com

- I'm not sure if they'll continue thru yahoo indefinitely now that they've set this up or what... altho it will certainly make things easier to find the info about rife and other alternatives rifers are using for lyme.

as there is more info here than you likely even realize that you want to know, lolol....

also here's another interesting site: http://www.lymediseaseresource.com/

and Dr. P Mulcahey's blog - he recommends abx, salt/c, herbal approaches: http://www.miracle-body.com/wordpress/


[This Message was Edited on 05/31/2008]

b

Thanks Kids!

MRDAD

your "BUMP" Victoria, and raise you a BUMP!

Huggles, MRDAD

This is a thread on Lymenet titled "Lyme disease groups and links to them":

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=060884 or http://tinyurl.com/yvgznc

I think this is an excellent web page with many links about Lyme disease:

http://www.wildcondor.com/lymelinks.html

This web site linked from that page is really interesting, IMO. It shows how truly awful Lyme disease can get.

http://actionlyme.50megs.com/neuroborreliosis%20aggression.htm

Roy

also just read your good posts about the MP... many thanks for them, very well written!

all the best, Victoria

TimeforLyme.org

"Time For Lyme is an organization dedicated to eliminating the devastating effects of Lyme disease and other tick-borne illness. Our mission is to prevent the spread of disease, develop definitive diagnostic tools and effective treatments and to ultimately find a cure for tick-borne illness by supporting research, education and the acquisition and dissemination of information. The group also advocates for Lyme disease sufferers and their families through support of legislative reform on the federal, state and local levels."

Lots of videos on youtube re lyme etc... but this is some of the best. Another place to find good info, btw, is Brian Rosner's site.

Investigative reporting on Lyme & co-infections don by a reporter in NY state, NYC, Hamptons: Part 1: http://youtube.com/watch?v=SjjuC66g9lw Part 2: http://youtube.com/watch?v=gQcmggDan84

Dr. Joseph J. Burrascano discusses the biotoxin work of Dr. Ritchie Shoemaker and impact on lyme: http://youtube.com/watch?v=DFwHXy99M2o

(My son is currently not doing anything but Shoemaker's protocol with the cholestyramine, so far so good, to date; next will be heavy metal chelation as he came up high on several)

Brooke Landau's story (newsreporter) http://www.youtube.com/watch?v=iaAjCRBcKJs&feature=related

Hyperbaric treatment, the part about lyme is the last 1/2: http://www.youtube.com/watch?v=rGZL6NKoPTU&feature=related

Under Our Skin documentary trailer and excerpts Trailer: http://www.youtube.com/watch?v=sxWgS0XLVqw&feature=user

different from yahoo group...

http://www.gaianstudies.org/

I can't see where the yahoo group that is using different rife machines is listed, most likely it is here, but just in case, here it is again:

Lyme-and-rife@yahoogroups.com

Thank you so much for this!

How does one go about asking for this to become a sticky, I wonder?

interesting- 1 Man's story of success:
http://www.lymediseaseresource.com/wordpress/one-success-with-the-buhner-protocol/#more-510


DaisyS-- Ye asked (I assume?) - & we received :)

looks like an excellent site about it:
http://planetthrive.com/cgi-bin/members/pub9990215891170.cgi?categoryid=9990235248536

Pamela Weintraub, senior editor at Discover Magazine and author of Cure
Unknown: Inside the Lyme Epidemic, has now joined the blogosphere with
the creation of her blog "Contested Diseases" on the high-profile,
hugely trafficked blog site hosted by Psychology Today magazine.

Her blog can be found here:
http://blogs.psychologytoday.com/blog/contested-diseases

Postings to the blog will appear a couple of times a week. In the months
ahead you can look to this space for discussion and dialog on Lyme and
its coinfections, along with other diseases that are ill-defined,
mysterious, contested, controversial - often unrecognized and written
off by doctors as nonexistent, or all in a person's head.

The blog opens with excerpts of CURE UNKNOWN to set the scene, but will
quickly segue to cover new research and other new and important issues
faced by patients and their doctors.

Read the first blog post:
http://blogs.psychologytoday.com/blog/contested-diseases/200812/into-the-woods
and be sure to register so you join Pam on the blogosphere by
contributing to the discussion (scroll down to the end of the first blog
post to register).

If you have an idea for something that should be covered by "Contested
Diseases" contact Pam Weintraub at pam@astralgia.com.

For those who are interested, an RSS fee for Contested Diseases can be found here: http://blogs.psychologytoday.com/blog/contested-diseases/feed

another site I don't think has been named:

http://www.lymediseaseresource.com/

From the yahoo group of people following the Buhner herbal protocol (Lyme_Aid_Buhner@yahoogroups.com ), here are some links to paste into your url bar to see different people's reactions/successes/experiences with the Buhner protocol:

http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/6665
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/3153
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/2228
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/851
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/889
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/1058
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/1179
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/1514
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/1517
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/1503
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/1435
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/1534
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/976
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/586
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/53
http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/message/47

Facebook for those with Lyme disease and coinfections:

http://www.thelymelight.com/

This board isn't very active. You can find many of the "old" Lyme people here.

Living with chronic Lyme blog etc:

http://strategic-living.blogs.com/livingwithlyme/2008/03/persistent-lyme.html

www.hansacenter.com

EXCELLENT!! Dr. J is the best!!! All natural treatments.

For whatever help it may give, we all should fill out the survey being done by the California Lyme Disease Assoc. Doesn't take long, you can find it here:

http://www.lymepolicywonk.org/

my 10-years chronically ill daughter is doing BETTER (not 100% yet) but thank God!!, this is the unfolding of a miracle. I highly recommend Dr. J in KS!!

One person's blog about her success with the Buhner protocol:

http://www.lymediseaseresource.com/wordpress/one-success-with-the-buhner-protocol/

This seems to be an interesting site, at least it will be interesting at least to see how it works out.

It's for swapping books, rife machines, etc.

"...'Rife Machine Swap' is being organized by new blog for those interested. Quite serious and in need of machines and help."

http://cave76andlyme.blogspot.com/2009/10/rife-machine-swap-machines-for-free.html

I love the name...

They currently have an archive of 300 articles and adding... AND it's free, all you have to do is register.

http://www.lymediseasedigitallibrary.com/lymebrary/index.php
OR LYMEBRARY.COM





[This Message was Edited on 10/13/2009]

people in the state of Georgia have formed a lyme advocacy group. I for one was shocked to read that one of the co-founders was dx'd in 1989 and that there were 700 cases... official line i ALWAYS heard was that GA didn't have lyme at least then.

Anyway, here's the link:

http://www.georgialymedisease.org/

Interesting links at this link for several different types of protocols, including TCM (chinese medicine):

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/86376?#000002