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lichen sclorosis and Lyme Disease

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sky23
sky23

Hi. Its ages since I last posted. Right now I am ill. I am being tested for Lyme disease. I have had lichen sclorosis and lichen planus for many years. I saw a private  consultant (for the Lyme) yesterday who told me there was a connection between Lyme and Lichen. I have since checked and there appears to be some clinical evidence that supports this(just google the connection between lichen sclorosis and lyme disease). I became ill after a tick bite on the Moors 3 years ago. However the consultant said it was likely another bite that did this from years ago that I got in the USA and whcih had laid dormant until awakened by the tick bite 3 years ago. Right now I can hardly lift my arms and things are not looking good. What does the lichen group make of the connection..and can anyone remember having a funny rash or getting bit? My brain is over cooking.

0 likes, 24 replies

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  • hanny32508
    hanny32508 sky23

    Posted

    Lyme disease is one miserable thing to have.  I have no idea whether there could be a connection to LS or LP.  But wish you all the strength needed to carry this heavy burden of a disease.
    • sky23
      sky23 hanny32508

      Posted

      Thanks Hanny. There really appears to be a connection between Lyme and lichen from googling..I am so not certain of anything right now..Your right Lyme is just horrible..and lichen does not seem to be half the problem once thought it..not to minimise it nor all our experiences with it but this other disease is shocking..
  • deb09833
    deb09833 sky23

    Posted

    So sorry you have this horrible disease and hope you have some good support of family and friends looking after you. In Australia we have a bit of head in the sand on Lymes. There a lot of high profile people saying it doesn't exist even though people were being diagnosed. Quite a few documentaries have done the rounds showing just how debilitating it is. There is now research going on as there are more people being diagnosed. Hopefully a cure will be found!
  • imoffoutofhere
    imoffoutofhere sky23

    Posted

    Hello Sky, so very sad you are not well, I will certainly look it up. I hope you get effective treatment soon. I do get very lethargic, but have always attributed it to thyroid problems, might be a link with lymes. The internet is a wonderful thing.
  • ChrissyC
    ChrissyC sky23

    Posted

    My mind is boggling right now. I've taken part in threads on here as I have LS but have never mentioned that I also have CFS/ME and take part in that forum too. It is known that there is some thought that some CFS/ME sufferers may actually have Lymes disease instead but I've never mentioned my LS on that forum either. I had no idea that it had ever been suggested that there could be a link between these 2 conditions that I have and now feel slightly overwhelmed!
  • imoffoutofhere
    imoffoutofhere sky23

    Posted

    Me too, overwhelmed, when I was first diagnosed I was reading I was 1 in 3000, now LS sufferers are everywhere on the net, 1 in 60. What is happening is LS is being recognised, it has always been there, but if doctors dont recognise it, or mistake it for other illnesses, it has just been going undetected, which may also be the case for the other illnesses you have, it seems like it is a vicious circle stemming from the immune system
  • deb09833
    deb09833 sky23

    Posted

    So if it is now one in 60 alarm bells should be ringing somewhere.if women have fusing labias and unable to have sex surely this impacts the entire human race. Evolution gone crazy. 
  • imoffoutofhere
    imoffoutofhere sky23

    Posted

    I dont think its evolution, LS appears in older women, peri and post menopausal, mainly. Some younger women get it, men and children get it but the vast majority are 35/40 plus.

    It could be irritants from chemicals we use in everyday items like sanitary towels. Personally, I started itching after I used always towels, and it eased when I used cheap all cotton and paper towels. I dont think LS is going to cause the extinction of the human race, but you do have a very valid argument. I think it is also attributed to women being too shy to see a doctor, whereas now LS is out in the open, and we know thwre are thousands of us, we speak more freely. I used to feel as if I were the only woman on the planet who was affected, and the why me factor was present more than once, now I have accepted it is becoming recognised, or maybe increasing in numbers, dont know, but its good we can talk about it openly.

    • Chrisy
      Chrisy imoffoutofhere

      Posted

      That is weird.  I always used always towels too as they did not leak.  My sister is a midwife and she said she notices that women who use their towels have a certain smell about their private parts.  She can tell which of her patients use always towels.  She won't use them for that reason.  I hope this is not contentious just stating facts.  Anyone else use them?
    • imoffoutofhere
      imoffoutofhere Chrisy

      Posted

      Chrissy, I recall an LS site a few years back, and always towels were a topic then, I only started getting LS after I began using them, the itch used to be unbearable. Then you find out that the absorbent powder is more or less cat litter! It took a while to realise it was always which caused the ithching, but rhe damage was done. I do feel that as with any other product, always and similar products should display the ingredients/components on the pack.
  • ChrissyC
    ChrissyC sky23

    Posted

    Loupielou and Deb09833 you are both very right in what you say regarding LS but it is Sky23's thread title post which is overwhelming me personally right now that there might be a link of Lyme disease between the co-existing conditions of LS and CFS/ME that I have. Any one else have both these conditions?
  • imoffoutofhere
    imoffoutofhere sky23

    Posted

    Maybe it would be a good idea to be tested for these illnesses, it might prove a vital link in the chain? If we are never tested, we just live with it? Put the symptoms down to other causes.
    • sky23
      sky23 imoffoutofhere

      Posted

      Testing is the problem here. Testing for Lyme is horribly flawed. Once bitten or infected there is a very small window of time before the virus leaves the blood and takes up residence elsewhere within the body, Plus the tests are proven to be inaccurate to a fairly high percentage. However, Lyme can re-enter the blood at a later stage be perhaps diagnosed. Most testing is now done at Porton Down,,I shall say no more on that,,hmmm. Lyme mirrors fibromyalgia and Polymialgia as well as a few others. In other words the symptoms are the same across the board. None of these disease have a pin point bloodtest which is very scary when you start developing symptoms and there is no easy diagnosis. As Lyme is treated with antibiotic and the rest treated with steriods it vital to be cautious as steriods make Lyme dynamic. The last few weeks have been an education I could do without. Right now it appears two camps are forming in the scientific world..one says this is can be a sexually transmitted disease, the other lot says it is not. My consultant leant towards the yes camp. What truly infuriated me was a US study I read showed Lyme bacteria appeared to be found in vaginal secretions and semen. This did not make sense as if you cannot find it easily in the blood why so easily in vaginal fluid and why don't they adopt this method of testing? I think that particular study was an attempt to bring back the days of the AIDS virus and the fear factor..this whole field is a minefield and there is polorised thought every where
    • imoffoutofhere
      imoffoutofhere sky23

      Posted

      Sky I took on board everything you said, you explain wonderfully. Yes, if it is found in vaginal fluids, it would be a simple swab test, rather than so many blood tests.

      I remember going to my gp saying I thought I had fibromyalgia because I had so many symptoms, he was not very nice, made a few snyde remarks, in the end I went to see an endocrynologist who diagnosed me with auto immune disease, a type that is undifferentiated, meaning it can be all symptoms, they cant define which one. I wish you well Sky, and hope a cure is found soon.

    • sky23
      sky23 imoffoutofhere

      Posted

      Thanks for the wishes.appreciated. Now is my time to fight on this thing..I appear to be leaving no stone un turned trying to wake professionals up to this thing and the misery it is causing..hmm..when dealing with snide remarks from people in power I think it is always best to try to get them to say what they mean..'I did not quite understand your last sentence, sorry, can you rephrase it? and smile...thus often causes throat clearing or the shuffle of a bottom on the seat..Not certain about a blanket diagnosis of auto immune...because how do you treat such a huge disorder...keep a diary for a bit..mark your good and bad days and list your symptoms as they appear..see what is re-occurring and how many days are wellness days.

      ..I wish you the best. I hope you stay in touch|

       

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