On NPR today

Discussion in 'Lyme Disease Archives' started by vivian53, Apr 20, 2009.

  1. vivian53

    vivian53 Member

    Did anyone catch the discussion on NPR (the Diane Reems (sp?)) show about Lyme this morning?

    I only heard the first few mins and then had to leave so I didn't get the major points of the discussion.

    Evidently there were several physicians, with of course, several opinions as to the nature of this disease, it's validity, and it's treatment.

    I go for my appt about my Lyme on Wed. and wanted to be armed with the latest info possible.

  2. Nanie46

    Nanie46 Moderator

    Hi vivian,

    I don't receive that show where I live, so I missed it too.

    The best way to arm yourself for your appt is reading the best lyme expert's info...good luck at your appt:

    http://www.ilads.org/ This is the organization that Lyme literate MD’s belong to and whose guidelines they follow when treating Lyme disease. Contains links to some of the best Lyme disease information.

    http://www.ilads.org/files/ILADS_Guidelines.pdf These are the ILADS guidelines for treating Lyme disease.

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf “Advanced Topics in Lyme Disease” Diagnostic Hints and Treatment Guidelines by Lyme expert Joseph Burrascano, MD. Also contains a symptom checklist, information about recommended testing, how to interpret a western blot, and good information about tick-borne co-infections.

    http://www.lymepa.org/ Lyme Disease Association of SE PA.

    http://www.lymepa.org/Basics2007v1.2landscape.pdf “Lyme Disease and Associated Diseases- The Basics” contains a comprehensive symptom checklist.

    http://www.angelfire.com/biz/romarkaraoke/whento.htm “When to Suspect Lyme” by John D. Bleiweiss, MD is a fascinating and informative essay.

    http://www.turnthecorner.org/tick-borne-disorders.htm “Turn the Corner Foundation” is a great organization founded to fight Lyme disease, provide grants for research and provide a training program for M.D.’s, D.O.’s, P.A.’s, RN’s, and other healthcare professionals.

    http://www.lymediseaseassociation.org/ Lyme Disease Association site contains helpful links to photos of rashes caused by tick-borne diseases, and other helpful information.

    http://www.drcharlescrist.com/testing.htm A very good explanation of the western blot for lyme.

    http://www.lymeinfo.net/neuropsych.html Neuro-Cognitive Lyme disease links.

    http://www.autoimmunityresearch.org/lyme-disease/ An informative report written by a Doctor of Veterinary Medicine who has Lyme disease.

    http://www.lymememorial.org/Transmission.htm Describes modes of transmission of tick-borne diseases.

    http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf “Lyme Disease: Considerations in Diagnosis and Management”. A fantastic powerpoint presentation by Steven Harris, MD, contains detailed information about how Lyme symptoms can mimic Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Parkinson’s, Alzheimer’s, Fibromyalgia, Chronic Fatigue Syndrome, and other illnesses.

    http://www.ilads.org/insurance.html “Lyme Disease: Two Standards of Care” by Lorraine Johnson, JD MBA examines the controversy between the IDSA and the ILADS standards for treating Lyme disease and is very well written.

    http://igenex.com Igenex is the reference laboratory in Palo Alto, CA where testing for Lyme disease should be done. They specialize in tick-borne diseases. Contact them to order free test kits with prepaid fed-ex labels. The commonly used test is the western blot IgG and IgM, test #188 and #189.

    http://www.thehumansideoflyme.net/index.php “The Human Side of Lyme” Research and writings by Virginia T. Sherr, MD.

    http://www.lymeinfo.net/coinfections.html Links to information about common Lyme disease co-infections.

    http://findarticles.com/p/articles/mi_m0ISW/is_252/ai_n6110580/ “New ideas about the cause, spread and therapy of Lyme disease”.

    http://www.lymeinfo.net/multiplesclerosis.html Lyme disease misdiagnosed as MS links.
  3. vivian53

    vivian53 Member

    You are a wealth of information. What, if any treatments helped you the most? I know I have read about your coinfections and allergies.

  4. vivian53

    vivian53 Member

    I appreciate the link and will listen to it tonight.

    You sound more educated than me, at least you spelled Diane's name correctly. ; ]

    I am both entertained and educated by her show and have been for many years, Her voice is so distinctive and I hope it holds out. She asks direct questions and demands honest answers.

  5. gapsych

    gapsych New Member

    I just listened to the program and am now even more convinced that an Infectious Disease doctor

    is the only way to be diagnosed correctly.

    I am sure others will have different opinions.

    [This Message was Edited on 04/24/2009]
  6. gapsych

    gapsych New Member

    I am not questioning your choice of what kind of doctor you go to.

    I just found the debate absolutely fascinating and as I said people will have to come up with their own conclusions.

    However, you bring up a point that I have always wondered about. If you can see the spirochetes under a microscope, couldn't that be used as a diagnosis?

    Take care.

  7. vivian53

    vivian53 Member

    Kelly I wanted to ask why you have been tested so many times and what these multiple testings do for you.

    What treatment will you get once those little rascals are seen under the microscope?

    Don't mean to sound ignorant...... but I am.

  8. Nanie46

    Nanie46 Moderator

    Hi Kelly,

    Your last statement said it all....it took a doctor who knew to look beyond the tests.

    One of the biggest mistakes Dr's make when ruling out lyme is to base their decision on a lab test.

    There is a saying that goes..Treat the patient, not the lab test.

    Lyme is never ruled out with just a lab test. It is a clinical diagnosis based on history and symptoms....now if we could just teach all Dr's that.

    Were you diagnosed with lupus because of a high speckled ANA??

    Just wondering since I had a high (not real high) speckled ANA and my LLMD said he sees that alot with lyme since it is just an inflammatory marker and it usually resolves with lyme treatment.

    take care!
  9. Nanie46

    Nanie46 Moderator

    hi Kelly,

    You are welcome and thanks for your kind words.

    I am not herxing...that stopped at 5 weeks. I am not really seeing improvement yet though...except for about 4-5 scattered nights of pretty good sleep about a month ago....better than I had in 21 years.

    I am 11 weeks into treatment. It seems like alot of people on lymenet say that when they finally got maybe 6 mo, or 8 mo or even 12 months into treatment they finally started to see big improvements.

    I guess after 21 years, it's not going to go away in 11 weeks.

    We are tick infested here in PA too, just a different kind of tick. We have alot of mountains, trees, tall grassy fields, rocks, and lots of mice and deer.

    I never even gave ticks a thought until I figured out I had lyme several months ago.
  10. vivian53

    vivian53 Member

    Thanks for your responses. I am learning so much from you "experts." We have to be the most informed people about our illnesses and subsequent medical interventions and you are helping me get there.

    I got my blood drawn for my Igenex Lab Lyme Test and will get the results in three weeks, I hope.

    I just wonder what treatment I will have if it is positive since I had already taken doxycycline for a year.

    Yep Kelly we are almost neighbors. I live a little further south than you do, I'm about 10 miles north of Pleasanton (south of San Antonio).

    Do you have to travel all the way to Dallas to see your LLMD? I have a new Rhumey in San Antonio but I wouldn't call him a true LLMD. If you have one in SA would you mind giving me a heads up on them?

  11. Nanie46

    Nanie46 Moderator

    Hi Vivian,

    A good LLMD who follow the ILADS guidelines will use combination antibiotic therapy that will attack the different forms that the borrrelia bacteria take...like the cyst form.

    Just doxy alone is not enough to do the job.

    I started my treatment 11 weeks ago with doxy, zithromax and plaquenil.

    It is common for LLMD's to change the med combos from time to time to attack the lyme and coinfections from all angles.

    It is really important for you to be properly evaluated for coinfections.

    Finding the right LLMD can make all the difference and is so worth it.

    Also remember that a lyme diagnosis should not be based on whether your test states positive or negative.

    Any Dr who rules out lyme because the overall interpretation says negative knows nothing about lyme.

    Lyme is a clinical diagnosis based on history and symptoms. It can be supported by labwork.

    Some people are so sick that they no longer are making antibodies to the lyme bacteria.

    The overall interpretation of my Igenex western blot said CDC negative and Igenex negative but I had several species specific bands that indicated that I do have lyme.

    I knew from reading Dr B's guidelines, page 7 and from reading Dr C's western blot explanation that my results were very significant....so I found a good LLMD even when my Dr said my test was negative.

    see links for the western blot info I referred to...



    Good thing too....my LLMD confirmed that I was right. Just goes to show you why sooooo many people are undiagnosed....Dr's do not know anything about lyme.