Home Forums General Discussion Question about Lyme and Autoimmune Diseas

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  • #304778
    kerry23
    Participant

    I have question:  I have been diagnosed (last June) with Scleroderma overlapping with Lupus, sjogrens and Fibromyalgia.  One of the tests were for lyme as well which came with a poitive #41 reactive lyme band.  Does that mean you have or have had it?  I haven't felt quite right in 4 years.  Two years ago, I went to a Rheumy who stated I had RA “SYMPTOMS” and that was the end of him.  So this year, I went back due to my ANA is always high (2 years).  With LYme disease, does your ANA go positivie?????

    I am just unsure if I started with Lyme and if so then what, more medications for treatment.

    Kerry

    #351645
    lynnie_sydney
    Participant

    Hi Kerry – I've seen that you have posted a similar sort of question in the last week. Sorry that this all seems so confusing at the moment. As I previously said, many people cannot access the Forum right now due to difficulties we cannot seem to resolve and which is going to see us need to jump to new software in the very near future. Among those not around here at the moment are some pretty experienced “Lymies” – including Kim (she's away), mschmidt (Maria) who cannot access and Maz, who also cannot access. For the time being, I'm going to suggest that you make use of the 'search' function above. If you type 'Band 41' in to the search box, alot of discussion and information will come up for you. You may also want to have a look at this doc's Lyme blog: http://lymemd.blogspot.com/2008/09/all-i-got-was-41band.html.

    Also, if you'd like a list of LLMD's (Lyme Literate docs), then PM me with your email address. I'll pass that on to one of the U.S. Volunteers and get them to email you a list of them. Lynnie

     

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #351646
    lynnie_sydney
    Participant

    Incidentally, a positive ANA does not necessarily indicate Lyme. It can be positive in a number of rheumatoid diseases and is found in 95% of those with Lupus. It is simply one of a number of diagnostic markers. Lynnie http://arthritis.about.com/od/diagnostic/a/ana.htm

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #351647
    nspiker
    Participant

    Hi kerry,

    Sounds like you are dealing with a host of different “diagnoses”.  Your high ANA is an indicator of an autoimmune component.  If you have lyme, it may be the underlying cause of SD, lupus, fibro, and sjogrens.  That is why so many here have been tested, and are treating for lyme. 

    Lyme testing is historically inacurate.  You can't trust the test, even the best of them.  I was tested for lyme, probably five times, and it was always negative.  I've had CFS for years, and then acquired ReA.  You must get an Igenex lyme test #188 and #189.  It is the best indicator of lyme exposure. 

    What company tested you for lyme?  Band 41 can be lyme, or it could be anything with a flagella.  It can cross-react with viruses and other bacteria.  I was only positive on band 41, and I am being treated, and improving significantly, with multiple antibiotics for babesia and lyme.

    My best recommendation, is for you to have Lynnie PM you with the LLMD's in NY.  Get an appointment set up, because you may have to wait months to be seen.  If you have lyme, and my guess is that you do, it will require multiple antibiotics.  The really good news is that treating lyme may negate your diagnosed illnesses.  Many here have treated lyme, and recovered from their autoimmune illnesses, including SD.

    nancy

    #351648
    lynnie_sydney
    Participant

    [user=1552]nspiker[/user] wrote:

    My best recommendation, is for you to have Lynnie PM you with the LLMD's in NY. 

    Nancy – I dont have the list of LLMD's for the U.S. The only lists I keep are for AP Docs in Australia and New Zealand. However, as per above post, if Kerry PM's me with her email address, I'll get one of the U..S. Volunteers to forward her the list by email. Lynnie

     

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #351649
    marypart
    Participant

    Kerry,

     

    In the meantime, if you go over to Lymenet.org and select the Seeking a Doctor forum, you can post a message there.  They will get back to you very quickly with a list of Lyme doctors near you.

     

    Mary

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