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Interesting theory from my cardiologist

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Oct 12, 2016.

  1. littlebird6180

    littlebird6180 Senior Member

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    I have a VERY ME/CFS friendly cardiologist (he works with many of Dr Klimas patients and they were both patients of each other at some point). Anyway, since I was about 14, I developed this pattern of freckles that follows a straight line (has a clear edge) up my left arm, on my left shoulder and stops almost center in my chest and above my breast. My other side is freckle free. I've heard various theories about this over the years but today my cardiologist noticed it and said "when did you develop this?" and then said "i'm almost certain this is a nerve that was damaged by a virus and this damaged nerve is probably responsible for many of your symptoms". He said I should ask Dr Vera about immunologic (can't remember if that's the exact word) therapy to target viral antibodies that show up in my blood. he seemed very excited about this.

    Anyway, just curious if anyone else has a similar pattern of freckles on here. Attaching some poor quality photos so you can see.
    IMG_3218.JPG IMG_3215.JPG
     

    Attached Files:

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  2. frederic83

    frederic83 Senior Member

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    That's interesting. Did he mention which virus and how the immunologist could treat it? Have you seen Dr Vera? How could a damaged nerve cause that? I had a rash on my chest that was somewhat geographic. It was itchy and It went away after a few days. The dermatologists were unable to told me what it was. I think it was EBV.
     
  3. littlebird6180

    littlebird6180 Senior Member

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    I'm not entirely sure I translated correctly or understood correctly. He basically believes a virus damaged my autonomic nervous system and I have a lot of cardiac symptoms and the pathway this nerve follows seemed to make some sense to him. He said dr Vera (I've been seeing her for 1.5 years) would first test my blood for viral antibodies - I showed EBV and parvovirus in past tests - and then give an immune formula that targeted and destroyed those antibodies. Again, not getting this entirely right but I'm seeing Vera on the 20th and am counting on her to explain it all. I just found it interesting.
     
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  4. alicec

    alicec Senior Member

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    How refreshing to find a cardiologist prepared to think outside his/her specialty.

    I had no doubt that the cardiologist I consulted for my unstable blood pressure and orthostatic intolerance was very competent and was reassured when he said there was nothing wrong with my heart. That was the extent of his interest however though he did say in passing that he could send me to a neurologist (which I took up and from whom I received a much more thorough investigation).
     
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Woman Seeks Diagnosis for Mysterious Freckle Pattern
    http://www.msn.com/en-us/health/oth...sis-for-mysterious-freckle-pattern/vi-BBmSjOg
    On the video they called it a Speckled Lentiginous Nevus.

    Same patient, this time the story was published by the Daily Mail:

    Woman with bizarre freckle pattern that lines just one side of her body FINALLY gets a medical explanation as she prepares to undergo laser treatment
    http://www.dailymail.co.uk/news/article-3307198/Woman-freckles-right-body-baffles-experts.html
    I'd recommend getting a second opinion from a dermatologist. Having it on one side gives it a more specific description of Unilateral Speckled Lentiginous Nevus.
     
    Last edited: Oct 13, 2016
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  6. littlebird6180

    littlebird6180 Senior Member

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    Wow! Thanks so much for sharing that. I've seen numerous dermatologists and they are always interested in it but don't say much. Maybe because I don't complain about it - I find it a little sad this woman wanted to have it removed because she looks beautiful to me but I certainly understand her reasoning. If mine extended to my face, maybe I'd feel differently but I've never been bothered by them.
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As indicated in the video, I am pretty sure these are essentially 'birthmarks' even though they may not appear until adolescence. (The tendency of skin to freckle often changes with time.) The area covered fits with several embryonic segments on one side. It is much too big to be a single nerve root or branch. I would guess that early in development a patch of cells destined to become the skin for a set of segments shifts its genetic make-up - possibly through an epigenetic change.

    Scarring from herpes zoster can look slightly like this - with strings of dark patches where blisters have been - but really not much like it. Zoster usually affects just one nerve root and is vanishingly rare in adolescence. Moreover, to produce brown marks there would need to have been ruptured blisters with raw skin at the beginning. Even here, the rash has nothing to do with antibodies to virus, which are useful and protective.
     
  8. littlebird6180

    littlebird6180 Senior Member

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    thank you for taking the time to read this post and comment. that does seem straightforward and to make sense to me - it's hard as a patient not to get excited at potential new insights. since so much of my CFS seems to be related to my heart, the pattern of freckles covering and stopping at my heart felt like maybe it was related and my cardiologists piqued interest reinforced that notion to me. I'll still discuss it with Dr Vera but am sure you are right, that it's just a birthmark.
     

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