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  • #300170
    Maz
    Keymaster

    ABC News 13 WSET in Lynchburg, VA.

    Reporter, Noreen Turyn's followup to her previous three part Lyme Disease Controversy Series. This segment aired 4/24/08:

    http://www.wset.com/news/stories/0408/514292_video.html?ref=newsstory

    Below is the full interview Noreen did with Lyme patient, Sarah Epps, who was diagnosed with Lupus and Fibromyalgia, described in this interview as “symptoms of Lyme Disease.”

    http://cfc.wset.com/videoondemand.cfm?id=13343&ref=home

    To see the original Lyme Disease Controversy Series and other TBD video's by
    Noreen and WSET::

    http://cfc.wset.com/mainsearch.cfm?ref=home&k=Lyme&x=13&y=5

    Peace, Maz

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #311935
    Dee
    Participant

     What test is best for diagnosing Lyme disease?  I have had a rash on and off for years.  At first I thought I had been bitten by a spider.  Then when I noticed it again, I thought my silk undies were bothering me and changed to cotton.  Then I listened to a couple of women talking about in-grown hair and thought I had been lucky not to have any in-grown hair until age 50.  I have had positive RF and anti-CCP tests though. 

    #311936
    Maz
    Keymaster

    [user=241]Dee[/user] wrote:

    What test is best for diagnosing Lyme disease?  I have had positive RF and anti-CCP tests though. 

    Hi Dee,

    This is a very good question and is one of the 'bones of contention' that is at the center of the “Lyme Wars”…that's because there is currently no 100% accurate test for Lyme and very little effort being put towards finding one.

    There are tests that the Lyme community considers to be more sensitive/accurate (see labs and links below). However, as the LLMD in the news report stated, although these more sensitive tests are now finding 4 out 5 cases of Lyme, as opposed to the standard tests that are approved by the IDSA that find only one third of cases, these specialized testing labs are not approved by IDSA (and therefore not covered by insurance), so patients usually have to pay hundreds of dollars out of pocket.  

    This recent study, published on March 2nd, also confirms what LLMDs  have been saying all along…that the standard Lyme treatment (unless caught very early in the rash stage) is not enough to eradicate the Lyme spirochete, because even when blood serum levels test negative after antibiotic treatment, these pleomorphic organisms have the ability to hide out and take up residence in collagen-rich tissues, evading standard testing methods. So, the IDSA's claim that 2 to 4 weeks of antibiotics is enough to eradicate Lyme is simply unfounded in the science.

    “Persistence of Borrelia burgdorferi Following Antibiotic Treatment in Mice”

    http://aac.asm.org/cgi/content/abstract/AAC.01050-07v1

    IGeneX – http://www.igenex.org

    Central Florida Research Inc. –  http://www.centralfloridaresearch.com

    I think the point that the reporter in this news report is trying to make is that most LLMDs feel it is vital to make a diagnosis based on patient history and clinical presentation, regardless of tests. If the standard or specialized tests are postitive, it's a bonus, but if they are negative it really doesn't mean a patient doesn't have Lyme.

    Therefore, it's really up to individual patients whether they want to get the expensive specialised Lyme testing done. Further, due to this expense, it's really best to have the tests done under the guidance of an experienced Lyme Literate physician, so you don't go wasting money on tests that may not be necessary. In general, the Western Blot is the gold standard, but there are also coinfections to consider that may differ a lot between patients. It does mean you have to pay for the LLMD consult, though. 😉

    Dee – I also have a positive anti-CCP (above 60) and RF (down now from mid-500s to mid-40s). According to my LLMD, RF can be elevated in any number of conditions, including Lyme, which is well-documented. When I first got sick and asked about anti-CCP and whether this meant I had RA and not Lyme, he confirmed it was both, his opinion being that the Lyme infection triggered it. As such, once the Lyme is adequately controlled, my immune system will be able to manage the infection and will quiet down, causing the RA to remit. In effect, having Lyme is not so different to having mycoplasma (which is also a common coinfection of Lyme). It's been slow-going, but I'm about 85 – 90% better and he's been right so far!

    Hope this helps some…a lot to take in, I know. 😯 In short, the specialised tests are costly and regarded as being about 80% accurate. To ensure you are getting the right ones done, it's best to see a LLMD.

    Peace, Maz  

     

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

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