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Freaky Rash: Pityriasis Rosea

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Stone, Sep 1, 2010.

  1. Stone

    Stone Senior Member

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    I'm having a lot of fun with a charming rash called Pityriasis Rosea. Interestingly, I've read that it's thought to be associated with....wait for it.....HHV-6, which is also associated with CFS (depending on who you ask). So I'm wondering if this is common among people with ME/CFS. It looks a lot like ringworm but there are multiple lesions that seem to pop up out of nowhere. Often it starts with one big patch then the others follow. It's usually confined to the trunk of the body but can appear on other places. It's also common in immunosuppressed people such as organ transplant recipients, people on chemotherapy and people with HIV.

    They say it's harmless and has to simply run it's course, but I don't know, I've been feeling pretty 'viral' and I think it's related to this rash thing.

    Has anyone had this or think they may have had it? What was your experience with it?
  2. SOC

    SOC Moderator and Senior Member

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    Hey! That sounds just like the rash I had during my 10-12 week rough patch with Valcyte. My HSV titre skyrocketed during that time, too. And my EBV titre went up. And I looked like I had the mumps right before the rash. (It wasn't pretty, in case you hadn't guessed)

    PS I started feeling a lot better after the rash went away....... if that's any encouragement......

    Since I have an active HHV-6 infection, I guess it fits.

    The only thing that seemed to help me was lots of washing with antibacterial soap to keep it from getting infected. A doc at Convenient Care gave me a once-a-week systemic antifungal for 2 weeks. I don't think it did anything.

    I'm trying to forget those weeks of my life ;), but I think the rash lasted 4-6 weeks and went away on it's own -- first patches first, last patches last.

    I'm sorry you have the rash. :( The fluish feeling doesn't sound good....
  3. Stone

    Stone Senior Member

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    Hi Sick,
    Well, here's the thing, this started several weeks ago and seemed to be running it's course and going away like a good little rash, but then I started feeling flu-like and EXTREMELY achey. I'm talking real bad, all over, but particularly my neck, shoulders and sciatic nerves. One morning my neck was so sore and stiff I had to turn my head with my hands to start the process of turning over in bed. This was about 3 days ago, and now even before the old patches are gone, I'm breaking out with new ones all over again!

    I think my immune system is dangerously low and I'm really worried because I'm scheduled to have my gallbladder taken out on Wednesday. I'm also having an endoscopy at the same time. This is all going on while I'm struggling with extremely painful femoral neuropathy, and they don't know what's causing it. It started over a year ago and is getting worse and worse.

    I'm really afraid to have the surgery with my immune system like this. Well, I'm just assuming my immune system is not working based on how terrible I feel and the pityriasis rosea, and my generally debilitated state. I've never been tested for HHV-6 and I don't see how I can get a doctor convinced I need this test before my surgery, and I'm afraid to delay the surgery because I can hardly keep a morsel down, I'm dropping weight like crazy and my gallbladder is really furious.

    I'm worried. I don't have any reserve and I don't think I will be able to withstand any further assault to my body should a complication arise from the surgery or something else.

    Thoughts?
  4. SOC

    SOC Moderator and Senior Member

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    Gosh! I'd be worried about having surgery, too! It does sound like your immune system is a mess.
    Do you think you could convince a doctor that you need an immune function test of some kind before surgery? I'd think they wouldn't want to do surgery if your immune function is poor. Does the doctor know about the rash and the flu-ish feeling?
  5. glenp

    glenp "and this too shall pass"

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    Hope it goes ok

    I would be terrified Stone. I always ask for prophylactic antibiotics before any surgery now after having "caught" several infectiions in hospital. Many doctors do not like to give them. I also watch out for everything that goes on--eg I do not let the residents touch me when they go from patient to patient. Besides watching your own body you need to watch what goes on there too. Good luck Stone, I hope that it goes ok for you.

    glen
  6. Stone

    Stone Senior Member

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    Thanks for validating my concerns. I mean, I was wondering if I was just over reacting, but in my heart I know I have reason to worry a bit.

    The surgeon did order prophylactic antibiotics. I saw the order myself. She's a great surgeon, a rock star at Duke University, and this procedure is a cake walk for her. But there are so few doctors that understand that ME/CFS is a debilitating neuro-immune disease and that many (most, all) of us have some kind of immune dysfunction, often to a severe degree. I would feel a lot better if she assured me that she understands this very well, and even better if she said she got the whole HHV-6 connection.

    Even the dermatologist doesn't fully grasp it, but I did give her some information on CFS and XMRV and explained it. I compared it to a "slow motion AIDS" for purposes of illustration. She is listening but she has not read anything I've given her "yet", and clearly hasn't internalized all the implications that "X" presents, but at least she knew enough to tell me that in her note to my PCP she will recommend that he refer me to an infectious disease specialist. Whether or not my primary doc will do that is another thing entirely, and NONE of this is going to happen before my surgery next week <sigh>.

    Should I call my PCP and leave a message with the triage nurse, who will give the message to his nurse, who will give the message to the doctor that -- well, what? I don't know how to adequately explain this without sounding like a hypochondriac. "I'm scheduled to have my GB out next week and I'm worried about my immune system because my rash is breaking out a second time on top of the first rash which might indicate that I might have an HHV-6 reactivation?" They'll never get that through the hoops into the doctor's ears and even if they did, what can he do about it, assuming he even understands what I'm trying to get at?

    Should I call my dermatologist (even though I was there yesterday and I already told her and the PA that I'm having surgery next week) and say, "I just figured out that these new lesions are not a continuation of the initial PR outbreak, but actually a secondary outbreak on top of the first one and I'm really concerned about having surgery next week (at one of the best hospitals in the world with one of the best surgeons in the world) because I might be experiencing an HHV-6 reactivation which might indicate that my immune system is not functioning well"? This would also sound looney since it's almost unheard of to have PR twice and the connection with HHV-6 (and it's connection with CFS for that matter) is still circumstantial. And again, what could they do about it?

    I think I may be stuck between a rock and a hard place. If I delay the surgery, I will probably become even more debilitated, since I can't eat much of anything and haven't been able to for some time now. At any moment I could go into an acute attack and need the surgery on an emergency basis and would have to just take whatever surgeon I get at my local hospital. If I go ahead with it as scheduled, I get to have it at Duke with the rock star surgeon and have it done laparoscopically. <another sigh>

    Maybe my best course of action is to simply pray and trust that things are well in hand and perhaps solicit prayer from my pastor and other people of faith for an uncomplicated and safe procedure with an uncomplicated and beneficial outcome. I'll do that anyway of course, but otherwise I don't see what else could be done at this point.

    Does anyone have any other ideas?
  7. SOC

    SOC Moderator and Senior Member

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    Can you try something as simple as, "I have an illness with documented immune dysfunction as a symptom. I would feel a lot more comfortable about surgery if we tested for [blank] before surgery." Use the CFIDS label, with it's "immune dysfunction" the name.

    It's probably a good time to test for an HHV-6 activation. Since you're feeling very fluish and have a rash, your titres might be really high.

    If you can get them to do an NK cell function test (whatever that is) and it shows low NK cell function, then they might choose to do some immune support or antivirals, or something as a precaution.

    I doubt the surgeon wants you to come crashing down with a viral infection after the surgery, so asking for a test (or two) may not be as hard as it seems. :)
  8. Stone

    Stone Senior Member

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    Thanks! Great advice. I just wish I had thought about that when I was on the phone with the nurse a minute ago. I called my PCP and told them I was having another outbreak of PR on top of the last one and I'm feeling very badly. I told them I'm scheduled to have my gallbladder out and an endoscopy on the 8th and I'm worried about my low immune system. The nurse called me back and said that the doctor said that once my sick gallbladder is out my immune system should be a lot better. I couldn't think fast enough to ask if they could somehow test my immune system to see how it's doing, ya know, before the surgery.

    So how can I build my immune system myself? What supplement can I take to support it? Anyone know?
  9. leaves

    leaves Senior Member

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    You can start olive leaf extract with high oleupirin, enhansa and imunovir (can get that at goldpharma). Diet is important too, many do well on a paleo diet.
  10. Stone

    Stone Senior Member

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    Thanks! I'll try that.


    Also, I just called a friend of mine who has AIDS. This fellow was HIV positive for many many years before he eventually became symptomatic. He did not start antiretrovirals before he was symptomatic because he couldn't tolerate them. He told me that what kept him from getting sick for so many years was large doses of vitamin C in the form of "Emergen-C" packets that you dissolve in water, and also something called Paudearco. It's a tea that comes from the bark of a South American tea, he says. He said that I should take enough of the Emergen-C to cause a little diarrhea and then back off to the point that it stops and then maintain that dose. And as for the tea, he said I should make it very strong since the surgery is so soon. He said it really does work and he still does this before he goes to the dentist or when he has to be in a situation where he might be exposed to infections such as air travel.

    Looks like I have a little shopping to do. But for now I need a nap. It's been a pretty stressful day so far. Thank you for your help. It's so wonderful to have a forum like this, filled with people like y'all. That's a treasured blessing indeed!
  11. bigdreams87

    bigdreams87

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    I have this. I have been trying to figure out what it is! I have about 60 dots on the right side of my body over where the liver would be. I never knew what to make of it.
  12. Stone

    Stone Senior Member

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    Well there you go! Wikipedia has a pretty good description with some pictures. I was absolutely positive I had an extremely aggressive case of "ringworm" but I was wrong.

    How long have you had it? Did you get any flu-like symptoms before or during the initial outbreak? Have you had it before? Do you happen to have any unusual neurological problems going on other than what is typical for CFS? How are you feeling in general since the outbreak? Am I asking too many questions? Do you want me to stop? Are you sure? :)

    Really, you can PM me if you prefer. And please forgive my nosiness. Inquiring minds need to know. ;-)

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