Home Forums General Discussion Under Our Skin – Please Go!!!

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  • #302333
    Parisa
    Participant

    Under Our Skin, the long awaited documentary about patients with Lyme disease is being released to theaters tomorrow in New York and then in other cities.  Please find a showing near your and bring all your family and friends.  We have to make as much noise with this movie as possible.  Making the public and doctors aware that long term treatment is necessary will also benefit patients seeking AP for rheumatic disease. 

    Here is a link showing screenings:

    http://www.underourskin.com/screenings.html

    #330792
    Parisa
    Participant

    Trying to send an attachment of a flyer but not sure if it's going to work.

    Nope, didn't work. It's a pdf and I browsed to where it's located on my computer but it doesn't show up here.  Anyone computer savvy and can help?

    #330793
    lynnie_sydney
    Participant

    Parisa – just double check to where you've saved it on your PC before you browse to double check it's saved where you thought it was. A different location is all I can think of if you cant find it when browsing. Otherwise, beats me! 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)

    #330794
    Kim
    Participant

    Thanks, Parisa.  I bought the DVD and it is an eye-opener for sure.

    kim

    #330795
    Maz
    Keymaster

    This just came in to CTLyme, an article in the Hartford Courant from one of the top chronic Lyme denialists, a well-known physician of Lyme who has a history of denying very sick children the treatment they need….the same ol' same ol'….but just go look at the comments flooding in, including those of several physicians and their experience of Lyme.

    Lymies, feel free to add your comments to the article – I did – it's easy to do and the more that come in from other states to this local newspaper, the wider the devastating prevalence of Lyme with be known.

    http://www.courant.com/news/opinion/editorials/hc-zemel-lyme-disease.artjun19,0,5257058.story

    If you haven't see the movie Under Our Skin and it's in a theatre near you, please go…you won't be disappointed, nor will you look at Lyme in quite the same way ever again.

    Peace, Maz

    #330796
    Trudi
    Participant

    [user=27]Maz[/user] wrote:

    Lymies, feel free to add your comments to the article – I did – it's easy to do and the more that come in from other states to this local newspaper, the wider the devastating prevalence of Lyme with be known.

    Hi Maz–

    I just added my comment.  Thanks for bringing this to our attention.  Well-thought out comments from everyone (esp Marion :)).

    Take care,

    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #330797
    Kim
    Participant

    Trudi,

    You beat me to it…….Marion's comments were the best! 🙂

    I posted my two cents. 🙁

    kim

    #330798
    Trudi
    Participant

    [user=40]Kim[/user] wrote:

    I posted my two cents. 🙁

    I looked for your post, but didn't find it.  Darn, wanted to read your 2 cents worth :roll-laugh:!

    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #330799
    Kim
    Participant

    It's more like one cent worth.  It's at the top of page 3.

    #330800
    Trudi
    Participant

    [user=40]Kim[/user] wrote:

    It's more like one cent worth.  It's at the top of page 3.

    Hi Kim–

    Found it! I'm glad you posted how far you have to drive for care.  From the time I first saw my doctor in October, 2008, he now has a 300-patient waiting list.  He has the video, Under Our Skin playing continually all day.  I haven't seen the whole thing, but my husband has.  He was stunned.  It is discouraging the lack of knowledge and the arrogance of doctors who will not treat.  My husband worked for a woman who was clinically diagnosed 10-15 years ago with Lyme.  Her test was negative.  Nonetheless, her doctor put her on 3-months antibiotics and she has had no symptoms since.  Her brother-in-law is a hunter, got bit by a tick, had the bulls-eye rash and was refused treatment–this is recently.  I wonder if the doctors were more savvy 10-15 years ago.  Actually, I think back then it was a big leap of faith to be put on 3-months worth of antibiotics–know what I mean?

    Take care,

    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #330801
    Kim
    Participant

    It just blows my mind how doctors will pass out dangerous drugs like candy for every symptom somebody walks in the door with, but hold back on the antibiotics for an obvious infection. :headbang:

    kim

    #330802
    Trudi
    Participant

    Hi All–

    This just was posted on http://www.courant.com/news/opinion/editorials/hc-zemel-lyme-disease.artjun19,0,5257058.story

    YEAH!!!

    [align=center]Governor signs bill, shielding doctors in treatment of Lyme disease [/align]

    [align=center]Written by Jack Sanders

    Sunday, June 21, 2009
    [/align]
    Governor M. Jodi Rell said Sunday she has signed a bill allowing doctors to prescribe long-term antibiotics in the treatment of persistent Lyme disease ? outside of standard guidelines ? without fear of sanctions from state health regulators if the patient?s clinical diagnosis of the tick-borne disease and treatment have been documented by a licensed physician.

    ?Doctors in Connecticut ? the absolute epicenter of Lyme disease ? can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected,? Governor Rell said. ?The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.? 

    The disease gets its name from the shoreline town of Lyme, Connecticut, where in 1975 a cluster of children and adults there experienced uncommon arthritic symptoms Caused by the bacterium Borrelia burgdorferi, Lyme disease is spread through the bite of infected deer ticks. Symptoms include a rash, fatigue, headache, fever, and achy muscles and joints. Later symptoms may include arthritis, neurological problems, and heart problems.      

    House Bill 6200, which gained broad bipartisan support in the Legislature, was prompted by an ongoing debate in the medical community. Some health organizations have questioned the existence of chronic Lyme disease and the Infectious Diseases Society of America (IDSA) has cautioned against the long-term use of antibiotics. Some physicians were hesitant to treat patients outside the IDSA guidelines because of potential reprimands from medical boards and insurance companies.

    ?Doctors will have the right to use treatment guidelines based on their clinical experience and best medical judgment,? Governor Rell said. ?This bill does not, however, shield any physician who provides substandard care.?

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #330803
    tainabell
    Participant

    Hi all,

    Just saw Under our Skin in New York followed by a Q&A with the director, and Mandy, one of the subjects of the film.  Jared, the young boy who was born with Lyme and was in a wheelchair, was also there with his parents for the screening.  The director seemed very touched that they had made it out.

    Mandy is doing well now, she said her symptoms are 95 percent gone, she just has the occasional aches and pains now and then.  She looked very well and was in great spirits.  So that was great to see.  She seems to be a great activist for Lyme – she is very passionate and rightfully angry about everything that goes on.   

    Such a great film with so much great information for people who are uninformed on this subject.  I would love for my parents to see it, but I don't see any screenings on there in MA. 

    I was really moved by the film.  It had a lot of information I already knew, but the “lightbulb” moment for me was when they showed the conflicts of interests that all the 14 doctors who are writing the “official” guidelines for treatment of Lyme have.  It was really well illustrated with the lights on in the windows illustration.  It got to me.   

    #330804
    tainabell
    Participant

    :roll-laugh::roll-laugh:Right on, CT!:roll-laugh:

    #330805
    Kim
    Participant

    Thanks for posting, Trudi.  Certainly a step in the right direction and long overdue.

    kim

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