LYME LINKS, INFO & PROTOCOLS SITES == please add on!

Discussion in 'Lyme Disease Archives' started by victoria, Mar 1, 2008.

  1. victoria

    victoria New Member

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

    Photo references of ticks:
    This one in particular is really good, as it shows what they look like from nymph stage to adult to bloated adult. I have pulled so many of these off my dogs over the years before I knew about Lyme...
    http://media.wiley.com/assets/152/38/0-7645-5318-6_000300.jpg

    Also an excellent site on google for seeing what the deer ticks look like:
    http://images.google.com/images?q=deer+tick&um=1&ie=UTF-8&ei=ZR-tS_TDLIL68AbB7YW5Dw&sa=X&oi=image_result_group&ct=title&resnum=4&ved=0CCEQsAQwAw
    (sorry I don't know how to do tiny urls)

    Added 5/27/2011:
    A WAY TO HELP SAVE $$$ ON LYME BLOOD TESTS:
    By pre-paying, you can save $$ on lab tests since most end up paying out of pocket for at least some tests (if not all)...
    or retesting...

    This page (below) also has a link for low income pts to get tested as well

    http://www.lymedisease.org/news/touchedbylyme/labtests.html

    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



    [This Message was Edited on 11/09/2008]
    [This Message was Edited on 01/07/2009]
    [This Message was Edited on 03/31/2010]
    [This Message was Edited on 05/27/2011]
  2. victoria

    victoria New Member

    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]
  3. victoria

    victoria New Member

    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

  4. foggyfroggy

    foggyfroggy Guest

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

    victoria New Member

    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


  6. victoria

    victoria New Member


    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

  7. victoria

    victoria New Member


    http://betterhealthguy.com/

    lots of links for different things including lyme



  8. zena01

    zena01 New Member

    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.
  9. mrdad

    mrdad New Member

    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
  10. victoria

    victoria New Member

    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

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


  11. victoria

    victoria New Member


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


    [This Message was Edited on 05/08/2008]
  12. victoria

    victoria New Member

    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/

    Edited to add 2010 buhner's updated protocol:
    There is an article about Buhner entitled
    "From a Source of Profound Insight Comes Hope...
    A Master's Update on the Treatment of Lyme Disease".

    This is in the April 2010 issue of Public Health Alert on the first page -
    this appears in PDF format.

    http://www.publichealthalert.org/Articles/scottforsgren/Buhner.htm


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

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

    Update 4/5/10, new Rife for Lyme group at:
    http://health.groups.yahoo.com/group/Lyme_Rife/

    Those on the (now defunct) 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

    Update 4-5-10: my son continues to do the MMS but needs something more... I think he will finally do the Rife. Here are some other sites re Rife besides the new one up above:

    http://health.groups.yahoo.com/group/DougPlus/
    This is an active group dedicated to Meissner's 'Doug' devices.
    According to Scott Adams: "Interestingly this one inventor's machines seems to have the highest per capita (i.e. folks trying it on themselves and seeing healing) rate of Lyme remission that I have personally heard of." (Not sure if someone's keeping state or not-V_

    For Salt/C protocol support group:
    http://health.groups.yahoo.com/group/lymestrategies/








    [This Message was Edited on 05/10/2008]
    [This Message was Edited on 07/17/2009]
    [This Message was Edited on 04/05/2010]
    [This Message was Edited on 06/09/2010]
  13. victoria

    victoria New Member

    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




  14. lymelights

    lymelights New Member

    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]
  15. victoria

    victoria New Member

    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.

  16. victoria

    victoria New Member

    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/

    *ETA: there is an updated protocol per 2010 now, see post of 6/21/10 on this thread

    [This Message was Edited on 05/31/2008]
    [This Message was Edited on 06/21/2010]
  17. bunnyfluff

    bunnyfluff Member

  18. mrdad

    mrdad New Member

    Thanks Kids!

    MRDAD
  19. mrdad

    mrdad New Member

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

    Huggles,
    MRDAD
  20. illroy

    illroy Member

    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