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  • #304422
    Kim
    Participant

    Wierd Skin With Chronic Lyme Disease? You May Have ACA.

    This article describes exactly what my skin did……..shiny, slick, hairless, paper-thin :shock::shock::shock:…………anyone else?  To quote Alice, “curiouser and curiouser.”

    http://www.lymediseaseresource.com/wordpress/wierd-skin-with-chronic-lyme-disease-you-may-have-aca/

    #349147
    Dan_M
    Participant

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

    Wierd Skin With Chronic Lyme Disease? You May Have ACA.

    This article describes exactly what my skin did……..shiny, slick, hairless, paper-thin :shock::shock::shock:…………anyone else? 

    OMG! 😯 When I saw this I immediately recognized it.

    “…shiny, slick, hairless, paper-thin…anyone else?”

    Yep. Sure looks like it.:angry:

    #349148
    Kim
    Participant

    Holy cow, Dan, that looks like the same foot in the picture! 😯

    Be sure and read the Medscape article too, also very informative.

    Take care…….kim

    p.s. I found it comforting that a rheumy or dermatologist wouldn't have a clue what it was. :headbang: :doh: :crying:

    #349149
    redrock
    Participant

    My foot totally looks like that. Please let me know which Lyme test I should get. I went on the Igenex site and there are a bunch of different tests and I don't know what to get.

    #349150
    Dan_M
    Participant

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

    Holy cow, Dan, that looks like the same foot in the picture! 😯

    Be sure and read the Medscape article too, also very informative.

    Take care…….kim

    p.s. I found it comforting that a rheumy or dermatologist wouldn't have a clue what it was. :headbang: :doh: :crying:

    Here is the other foot. I have to point out that both of these pictures were taken AFTER Ryan had been on AP for 6 weeks, after he had shown SIGNIFICANT progress, and we took these pics to show how much BETTER he was doing!

    “p.s. I found it comforting that a rheumy or dermatologist wouldn't have a clue what it was.”

    Yeah, I agree, Kim. So far, three rheumys have looked me straight in the eye and told me that there is no such thing as Chronic Lyme Disease, and even if there were, Lyme does not exist in Florida. Sheesh, what was I thinking?!:headbang::headbang::headbang::headbang::headbang:

    #349151
    Dan_M
    Participant

    For the record, here's that right foot again after 8 months on AP.

    #349152
    Dan_M
    Participant

    And here's the left one after 8 months on AP. (Picture taken January 2010).

    #349153
    spacehoppa
    Participant

    Hi Kim,

    My mum and I both have the exact same skin condition, and we both have RA and Lyme.

    My mum's is particularly bad, a bluish reddish rash, worst on her left ankle and it goes up her leg too. It recedes when she takes clarithromycin, and yet not one of her doctors thinks it's anything significant.

    I've attached a photo below. Ironically, this is a photo I took as evidence of how much it had improved on Clarithromycin treatment. I wish I'd taken one of it before when it looked like a deep blue/red bruise. She's off the clarithromycin now, so when it worsens again, I'll get another photo.

    We've had umpteen rheumatologists look at it and just say it's nothing, or they don't know what it is. For me, it's worst on my hands. The skin on the backs of my hands is paper thin and has been this way since long before I started on steroids, so I know it's not that. It has improved since I've been on the AP thankfully, but I doubt it will ever recover completely.

    #349154
    Kim
    Participant

    [user=2547]redrock[/user] wrote:

    My foot totally looks like that. Please let me know which Lyme test I should get. I went on the Igenex site and there are a bunch of different tests and I don't know what to get.

    Hi redrock,

    You can use the “search” button on the board for Lyme testing because we've had numerous discussions on this topic, but to get the basic Western Blot from Igenex it is Test #188 and #189 for $200.  You can order the test kit yourself, but will need a doctor to sign off (any doctor).

    Take care…..kim

    #349155
    Kim
    Participant

    Dan and Ruth,

    I'm so glad you two have photos to document changes.  Doesn't it make you wonder if some of the “bruising” that people think is coming from Minocin isn't Minocin at all? 😯

    The skin on my arms that was so hairless, slick, and paper thin, has returned to normal ~ more coarse the way it should be with baby-fine hair, but still able to produce hair now.  The skin on my hands is still like tissue paper showing big ugly veins.  Oh well, at least they work. 😉

    Take care…..kim

    #349156
    Dan_M
    Participant

    This has opened up some very interesting questions for me, but I have a feeling they will remain academic and I will never know the answers. First, if Ryan had ACA, could ACA also be caused by a mycoplasma infection? Or could it contribute to it? Because he was only on mino at the time he saw this improvement in his condition. On the other hand, I've read comments from people here who are only taking 50 or 100mg mino 3 times a week, while Ryan was taking 200 mg a day every single day. So he's been at the high end of the dosage scale. Also, that dosage is going to continue as part of his new Lyme protocol that we just started 3 weeks ago. So when he was seeing this improvement in his feet, he was in effect already taking a significant portion of his current Lyme protocol. So if it was ACA and the ACA was caused by Lyme, was the Lyme responding to the mino? That would lead to another question: whether these infections are mycoplasmas or bacteria or both, then are these various “bugs” smart enough that when they sense they are being attacked, they move from one part of the body and re-group somewhere else? I've mentioned several times that while Ryan has seen significant improvement in all parts of his body, the contractures in his hands have actually gotten worse. Could this be what has been happening?

    “Curiouser and curiouser”. Kim, you couldn't have said it any better than that!

    #349157
    Trudi
    Participant

    Hi Everyone–

    Since we're showing off our rashes, :), here is a picture of the rash I had for about a year :(–

    http://img69.imageshack.us/img69/5467/005lfw.jpg

    I sent this picture to Maz back in June.  Shortly thereafter she came across a powerpoint presentation showing someone with almost the identical rash.  With my permission, she contacted the author, a veterinarian, for his thoughts.  This vet has developed a sensitive test for Bartonella and I am now being tested for it.  I should have the results by end of September.  Hopefully something good will come from this!! 

    The rash started fading at the end of March this year and is now almost gone.  The skin at the site is very thin–

    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?

    #349158
    Kim
    Participant

    [user=1465]Dan_M[/user] wrote:

    This has opened up some very interesting questions for me, but I have a feeling they will remain academic and I will never know the answers. First, if Ryan had ACA, could ACA also be caused by a mycoplasma infection? Or could it contribute to it? Because he was only on mino at the time he saw this improvement in his condition. On the other hand, I've read comments from people here who are only taking 50 or 100mg mino 3 times a week, while Ryan was taking 200 mg a day every single day. So he's been at the high end of the dosage scale. Also, that dosage is going to continue as part of his new Lyme protocol that we just started 3 weeks ago. So when he was seeing this improvement in his feet, he was in effect already taking a significant portion of his current Lyme protocol. So if it was ACA and the ACA was caused by Lyme, was the Lyme responding to the mino? That would lead to another question: whether these infections are mycoplasmas or bacteria or both, then are these various “bugs” smart enough that when they sense they are being attacked, they move from one part of the body and re-group somewhere else? I've mentioned several times that while Ryan has seen significant improvement in all parts of his body, the contractures in his hands have actually gotten worse. Could this be what has been happening?

    “Curiouser and curiouser”. Kim, you couldn't have said it any better than that!

    Dan,

    I absolutely am not the one to answer this question, I guess even LLMDs would have conflicting answers due to all the complexities of this infection(s).

    Take care……kim

    #349159
    Kim
    Participant

    [user=442]Trudi[/user] wrote:

    Hi Everyone–

    Since we're showing off our rashes, :), here is a picture of the rash I had for about a year :(–

    http://img69.imageshack.us/img69/5467/005lfw.jpg

    I sent this picture to Maz back in June.  Shortly thereafter she came across a powerpoint presentation showing someone with almost the identical rash.  With my permission, she contacted the author, a veterinarian, for his thoughts.  This vet has developed a sensitive test for Bartonella and I am now being tested for it.  I should have the results by end of September.  Hopefully something good will come from this!! 

    The rash started fading at the end of March this year and is now almost gone.  The skin at the site is very thin–

    Oh my, Trudi, that rash looks so painful! :crying:  Sure hope the fact that the rash is healing means that you are too. 😕

    Take care…..kim

    #349160
    Trudi
    Participant

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

    Oh my, Trudi, that rash looks so painful! :crying:  Sure hope the fact that the rash is healing means that you are too. 😕

    Hi Kim–

    The rash didn't give me any pain, just my joints.  Yes, I sure hope that the rash leaving means I'm healing!

    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?

Viewing 15 posts - 1 through 15 (of 16 total)

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