A Video that EVERYONE with CFIDS FM & LYME should watch

Discussion in 'Fibromyalgia Main Forum' started by munch1958, Nov 12, 2007.

  1. munch1958

    munch1958 Member


    There is a slide show as part of this video! Even if you have dial-up you can still read the data on the slides.

    (It's recapped below.)[This Message was Edited on 11/25/2007]
  2. zoster

    zoster New Member

    2122 !! patients previously diagnosed with CFS found to have LYME out of that lot tested!

    This MUST be significant. What is the treatment for Lyme and how do I get tested in the UK??
  3. Esperanza25

    Esperanza25 New Member

    It was interesting to hear how FMS and all these other syndrome/diseases are related to lung disease and is funny that I had a sleep apnea test and it turned out I did not have sleep apnea, however, they found Respiratory Distress Syndrome. I'm not sure what it is but maybe my doctor can do some type of test in my lungs and find out what it is.
  4. mollystwin

    mollystwin New Member

    I wonder if this test will be widely available soon?

    With accurate testing, the next hurdle becomes finding doctors to treat all of the new patients.

    Everyone on this board should watch this video.

  5. acer2000

    acer2000 New Member

    Is this test available now?
  6. munch1958

    munch1958 Member

    The Bowen Institute's Diagnostic Test for Lyme Disease: "Rapid Identification of Borrelia burgdorferi"




    At Bowen Research & Training Institute, Inc., located in Palm Harbor, Florida, ongoing research is being conducted using the Bowen Q-RIBb (Quantitative Rapid Identification of Borrelia burgdorferi) test developed by Dr. JoAnne Whitaker.

    Originally a CLIA approved lab until April of 2003, the institute, lacking in vital grant funding, changed its status from that of a clinical lab to a research facility under the State of Florida Health Department. Since its inception, the main focus at the institute has been the development of an accurate test for the Borrelia burgdorferi (Bb) antigen, the causative agent of Lyme disease.

    Bb is difficult to detect by most laboratory methods in use today, and a little known fact is that there isn't currently a test approved by the FDA for Lyme Disease.

    According to a clinical study presented at a Lyme Disease Association Conference in 2003, of the tests available, the PCR is only 35% accurate for blood testing, and the Western Blot is only 50 - 60% accurate for blood testing.

    Other Lyme tests like the LUAT and ELISA fall below these levels of accuracy when testing for Lyme disease. These tests were originally "... devised to track a narrow band of cases for epidemiologic change and were never set up to be used as diagnostic criteria nor were they meant to define the entire scope of Lyme disease. This is stated in the 3/25/91 NIH report.

    Recently, Dr. Whitaker developed the titration serial dilution method for quantitating the amount of Bb antigen in the blood. This may help to differentiate the carriers from the patients with serious disease by comparing persistence of fluorescing structures.

    In this part of the test, whole blood is diluted and fluorescent antibody added. The solution containing the antigen is progressively diluted down until a count of the antigen in that particular blood sample remains. Bowen research has found the Bb antigen in whole blood, breast milk, urine, placental tissue, semen, eye fluid, teeth, foot nodules, shoulder fluid, spinal fluid, finger joint fluid, and African dust.

    Findings are documented with digital photography using Darkfield microscopy. The Bowen Lab receives blood specimens for Borrelia burgdorferi (Bb) from forty-six states, including Alaska and Hawaii.

    In addition, the Bowen lab receives blood from doctors ordering the test from Canada, Brazil, Denmark, Scotland, The Netherlands, Ireland, England, France, Spain, Germany, Switzerland, and the Canary Islands.

    The recent database numbers for those tested is approximately 6,000. According to a recent poll of patients clinically diagnosed with Lyme disease whose physicians had ordered the Bowen Q-RIBb test, 100% of those patients tested with the Bowen reported their tests were positive for Bb.

    Outside critics of the test believe the Bowen has "too many positives." Not so, if you consider that the people taking the Bowen Q-RiBb test could be 'clinically diagnosed' with Lyme just by evaluating their symptoms. Most had received negative or equivocal test results with the other Lyme tests ordered by their physicians.

    When negative or equivocal test results are interpreted by their physicians, it is determined that it is unlikely that their patients are infected with the Lyme bacteria. Physicians are hesitant to 'clinically' diagnose Lyme based on the symptoms alone.

    Patients pro-actively seeking an answer to their continued symptoms and suffering eventually learn about the Bowen Q-RIBb test. A positive result with the Bowen test helps these people finally get a proper diagnosis and get properly treated for Lyme disease and co-infections.

    The Bowen Q-RIBb test just recently received its preliminary US Patent approval. Although the Bowen Q-RiBb Test is not presently approved by the FDA for Lyme disease; an application for FDA approval is now pending.

    Before the Bowen Research project offering the Bowen Q-RIBb test to protocol physicians was approved, the Bowen Q-RiBb test had to be duplicated by two outside FDA approved laboratories. Dr. Lida Mattman's lab in Michigan did one of the duplications. Mattman, a prominent microbiologist, was nominated for a Nobel Prize for her work on stealth pathogens in 1997. Borrelia burgdorferi is a stealth pathogen.

    Dr. Mattman is one of the few scientists who have been able to successfully culture the Lyme bacteria from its cell wall deficient form, (L-Form) to spirochetes in a laboratory. In the duplication of the Bowen Q-RIBb test, Dr. Mattman used her culturing method which has been considered the 'gold standard' for testing. From the Bowen literature the Bowen lab statement is ..." Of 316 same draw blood samples, 316 cultured specimens grew out the organism Bb, and our Bowen Q-RIBb test was positive on all 316. The culture method is considered the 'gold standard' for making a definitive diagnosis of an infectious disease."

    As stated in the third edition of Dr. Lida Mattman's book, Stealth Pathogens, the Lyme bacteria, Borrelia burgdorferi, is a pleomorphic bacteria, and it can change form from a spirochete to a cell wall deficient form and back again. By doing so, it can evade the immune system. The immune system doesn't always produce antibodies against the bacteria, and therefore, Lyme testing for antibodies can produce False-Negative results. The Bowen Q-RiBb isn't looking for antibodies; it detects the actual antigen - the L-Form (cell wall deficient form) of the bacteria in the blood. The Bowen Q-RIBb accomplishes this with the use of fluorescent staining specific for detecting Bb that attaches to the protein in the L-Form. They use green in the stain because the eye is more sensitive to green and it can easily be seen under the Darkfield microscope. The Darkfield microscope is a high magnification microscope with a special lighting feature which allows for greater observation of the blood samples. Fluorescent staining for specific bacteria has been around for over fifty years. It is used to detect many pathogens in many diseases. To discount the procedure one would have to discount all tests done in the last fifty years using this technique. It would mean hundreds of tests used everyday for detecting diseases like e-coli would have to be considered invalid.

    Dr. Whitaker is an internationally recognized research and teaching physician and author of over seventy scholarly publications who has accumulated numerous awards and citations throughout her career. Dr. Whitaker has had numerous fellowship programs in pediatrics, hematology, oncology, nutrition and psychiatry. She taught in seven different medical schools and retired as a full professor of pediatrics. She spent nine years in Southeast Asia, starting a new medical school and nutritional laboratory in Thailand and a post-graduate program in Vietnam during the war. After returning from Vietnam, she was director of the Florida Mental Health Center in Tampa. She helped start and developed the first hospice in Florida and initiated the Little Kids Program for Abused Children at the Chi Chi Rodriguez Children's Program. Dr. JoAnne Whitaker's curriculum vitae can be viewed at www.bowen.org/dr__whitaker's_cv.htm

    Of over seventy published research papers Dr. Whitaker has written, several are listed below that clearly show how drawing from her experience as a scientist and physician Dr. Whitaker was able to develop the Bowen Q-RIBb test for Lyme disease.

    Whitaker, J. A., Page, R. H., Stulbert, C. S., & Zuezer, W. W. (1958). Rapid Identification of Enteropathogenic Escharlchia Coli 0127: BB by the Fluorescent Antibody Technique. AMA Diseases of Children, 95, 1-8.

    Whitaker, J. A., Zueler, W. W., Robinson, A. R., & Evans, H. (1958). The Use of Fluorescent Antibody Techniques for Demonstration of Erythrocyte Antigens. Journal of Laboratory and Clinical Medicine: 54

    Donaldson, P., & Whitaker, J. A. (1960). Diagnosis of Pertussis by Fluorescent Antibody Staining of Nasopharyngeal Smears. AMA Journal of Disease of Children, 99, 423-427.

    Whitaker, J. A., Nelson, J. D., and Fink, C. W. (1960) Rapid identification of Toxogenic Diphtheriae. Texas Reports on Biology and Medicine, 18 (3)

    Whitaker, J. A., Nelson J.D., & Fink, C. W. (1960) Rapid identification of Corynabacterium Diphtheriae. AMA Journal of Children, 100 (4), 130-131.

    Whitaker, J. A., Donaldson, P., & Nelson, J.D. (1960). Diagnosis of Pertussis by The Fluorescent Labeled Antibodies. Pediatrics, 27.

    Nelson, J.D., & Whitaker, J.A. (1961). Diagnosis of Enteropathogenic E. Coli Diarrhea by Fluorescent Labeled Antibodies. Pediatrics 27.

    Whitaker, J.A., Nelson, J.D., & Fink, C. W. (1961). The Fluorescent Antitoxin Test for the Immediate Diagnosis of Diphtheria. Pediatrics 27, (2).

    Nelson, J.D., Whitaker, J.A., Hempstead, B., & Harris, M. (1961). Epidemiological Application of the Fluorescent Antibody Technique: Study of Diarrhea Outbreak in a Premature Nursery. JAMA, 176, 26-30.

    Whitaker, J.A., & Vietti, T., (1959). A rapid Test for the Diagnosis of Lead Poisoning. The Society for Pediatric Research [Abstract].

    Whitaker, J.A., Nelson, J., Fink, C.W., (1960). Rapid Identification of Toxigenic Corynebacterium Diphtheriae. The Society for Pediatric Research [Abstract].

    Whitaker, J.A., & Vietti, T., (1960). A Rapid Test for the Diagnosis of Lead Poisoning Toxic Episodes in Children. Modern Medicine, 1 (1) 8. Whitaker, J.A. (1960). Diagnosis of Pertussis by Fluorescent Antibody Staining of Naso-Pharyngeal Smears. Modern Medicine.

    Whitaker, J.A., Donaldson, P., & Nelson, J.D. (1960). Diagnosis of Pertussis By Fluorescent Antibody Staining of Pharyngeal Smears. American Pediatric Society. [Abstract]

    Nelson, J., & Whitaker, J.A., (1961). Experiences with Fluorescent Antibody Clinical Laboratory. American Pediatric Society [Abstract]

    Whitaker, J.A., Fort, E., Mattman, L, Hockstra, P. (2001) A New Whole Blood Method to Identify Borrelia burgdorferi, the causative agent of Lyme disease. Manuscript presented for Publication: Laboratory Medicine.

    According to ILADS, the International Lyme and Associated Diseases Society, Lyme disease is a very serious illness worldwide. For more information, go to ILADS website www.ILADS.org and Bowen Research & Training Institute, Inc. at www.bowen.org.

    For More information link to: www.bowen.org/information.htm

    [This Message was Edited on 11/12/2007]
  7. Daisys

    Daisys Member

    What's so great is that Lyme disease can be cured! It just takes finding a doctor who understands how to treat it (that's the challenge!)

    I'm going to show my LLMD this literature, because I am seronegative so far. I'd like to have more proof than the CD57 (somewhat controversial) and reaction to treatment.
  8. munch1958

    munch1958 Member

    I'm going to ask my local doctor to order this test to see if any of the bacteria is left in my blood. I'd love to have some pictures and a report that says "POSITIVE."

    Info on how to order:
  9. Daisys

    Daisys Member

    Thanks for the info, munch! I'll bring that to my next appt.
  10. HurtsToMove

    HurtsToMove New Member

    I believe the new test for antigens (not antibodies) is $250, not $50. They now accept insurance. If you are uninsured it's $200. Please correct me if I'm mistaken.
    [This Message was Edited on 11/12/2007]
  11. bunnyfluff

    bunnyfluff Member

    Thank you so much for this! I hope that this test will help others get the CORRECT Dx, and get on with their lives. As someone who had previously been given the news "there's nothing we can do for you~learn to live with CFS", I am so very happy to have gotten my Lyme Dx!

    My improvement is steady, and I look forward to the day that I am back to my *old life*. I feel that the 7 yrs I have lost to the WRONG Dx's has been enuf time lost!

    All my best,
  12. mollystwin

    mollystwin New Member

    Grace54 had this test and it was negative. Perhaps he'll post here about his experience.
  13. zoster

    zoster New Member

    Thanks loads Munch! - I'll be coming back later to read the article on the new Lyme test.

    Very Best Wishes
    Z x
  14. munch1958

    munch1958 Member

    I remember Grace54 getting a test but I'm not sure which one it was either.

    The screening test is $50. There is another test for $250. I didn't look too closely at the differences in the test.
    My thought was they do one to see if it's a possibilty then do the other.

    I plan on asking my LLMD if either of the Bowen tests would be good to use to check on the bacteria. He doesn't order the CD57 test because it's going to be low and it doesn't provide any new info.

    He thinks the most critical test is the MOCHA panel for hypercogulation from www.hemex.com. I'd have to agree with him as heparin has been the single most effective treatment for me to date.

    I was not crazy about doing shots every day but it turned out to be no big deal. Heparin clears up my brain fog in minutes. There probably was no oxygen or blood circulating up there.

    I am encouraged after reading this in Stephan Buhner's book "Healing Lyme" page 45-6:

    "After the spirochetes are well established in the meninges (Linda's note -- the meninges part means the stiff neck!), they will often begin to penetrate the brain, adhering to the brain's glial cells especially the neuroglia, astrocytes, and microglia.

    The neuorglia is a supporting tissue that is intermingled with other tissues throughout the brain. Microglia are scattered throughout the brain and central nervous system and essentially act like macrophages. That is upon infection they are activated to fight it. (See section on Lyme Neurotoxins, this chapter.)

    Astrocytes are brain cells that are also capable of phagocytosis. They are failry large, star-shaped (hence their name - astro means star) and they support the nerve cells (neurons) of the brain and spinal cord. Basically, spirochetes adhere to both nerve and brain cells, causing changes in both.

    Different types of proteoglycans contribute to the spirochetes ability to bind to brain cells. Binding is inhibited by substances that interfere with proteoglycan synthesis, and by exogenous (externally supplied) proteoglycans, e.g. heparin. (That is why heparin taken along with antibiotics has been found to help cure the disease.)"

  15. munch1958

    munch1958 Member

    Hippty hop to the top!
  16. msbsgblue

    msbsgblue Member

    This will put it in my profile so I can find it easier. Want my hubby who also has this dd to see it.
  17. ScottInCalifornia82

    ScottInCalifornia82 New Member

    I think I've finally been convinced to do more testing for Lyme disease.

    Thanks munch1958, you've posted a lot of useful information and insight.
  18. cherylsue

    cherylsue Member

    Hi Linda,

    Hope you are improving and getting all your bulbs planted. How many are you planting anyway?

    I seem to have plateaued and am starting the amoxicillin again. I think I've gone as far as I can on the cumanda, but will continue to take it.

    Dr. C wants me to take nystatin, but I'm scared to start it. I am so sensitive to meds. The amoxicillin is hard enough. Cumanda is supposed to be an excellent antifungal. I take probiotitcs and plain yogurt. Can I get by with that?

    What has been your experience with the Nystatin?

  19. fight4acure

    fight4acure Member

    Thanks Munch! I'll watch it later when I get new speakers as mine do not work.

  20. grace54

    grace54 New Member

    Yes Mollystwin is correct in that I had this test called Bb direct fluorescent antibody by flow cytometry.

    There are only 3 criteria on it.

    0.04 positive

    I was negative.But they did say to retest in two weeks so I suspect they saw something but not enough of those littles buggers to say positive.

    I liked the Igenix western blot as it showed some positive bands. Though it said negative on the test I had enough bands that a Lyme Dr. would treat me.Especially if they used the revised version that Munch speaks of I would pass many times over.:) They do have a $50.00 screening test, if you go to their web-site it explains it.:)

    [This Message was Edited on 11/20/2007]