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.
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.
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..
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!
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.
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!
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
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.
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.
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?
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.
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
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.
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|
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?
o h my lord your poor thing its not enough to have Ls but theres more i wish i could hug you to help you feel a little bit better . hope you have some one you can talk to . i recently contacted our womens health here australia and blabbed my heart to a wonderful understanding nurse on the other end of the phone and it help me heaps and she now keeps in contact with me and found me a valva doctor to see. good luck keep us posted on how you are doing
oxoxo
ok, well first thing is don't stress yet as it tends to make things worse. A good vulval doctor will be on the look out for all sorts of things. Best advise I can give is do not use soap and wear knickers that are over large and cotton..this does not mean granny..it just means thongs for a size 16 on a size 10 person..and stick to cotton and nylon creates too much heat. Do not rub or scratch....and that is a hard one to achieve....I used manuka on lesions...it seemed to heal them faster but it can cause thrush, As for me I have found an interesting Doctor (private) who has some idea on Lyme..she is eighty years ole and shows up all the rest with her brain..she is also a bit of an activist on things like this which shows me up..I shall have to catch up with her..I am having a bad time..this thing has hit my arms and forearms..it has not hit my fingers. It would seem Germany is the place to be..but maybe not for me as the 1st bite I received was in the USA from a spider..current opinion seems to think the more recent tick bite in the UK activated this So the strain belongs to the USA so more testing belongs there....how can anyone be sure?..best words for today are..'lost in space somewhere' perhaps I will touch down romorrow
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.
You are so right there.
hi sky
i'm really sorry. i've heard of this too. I hope its ok to talk about theories....but i'm getting the impression that this connection lymes fibro LS etc...seems to be associated with over vigourous medical treatments and chemicals. basically lymes is the reaction to a tick bite but its something the body could throw off...except we have so knocked out our immune systems that the body can't adjust...whilst overwhelmed with these chemicals ..but IT COULD once again if relieved of all the poisoning. i know that sounds like the words of a simpleton but i trained as a nurse and i've seen so many things go on that i don't condone and so much good benefit from way more gentle and natural methodologies.
i think the person who noticed that their sanitary towel was causing them a problem was very astute...i 'm wondering if its actually ALL the chemicals surrounding us and if we're in a toxic world that we need to do something about?
hopefully younger people will come forward as i've certainly done my 'friends of the earth' bit ... i greatly appreciate that organisation and all the others out there but at the mo i'm trying to address root causes and i have a theory..i hope this helps ...that we're suppressing our immune systems when in fact we need to support our body's immune activity...which is not the same as over-activating it. so de-toxing yes ...but gently. everything focused towards chemical removal ie supporting the digestive system, the liver and kidneys and going quietly and systematically through the normal functions of helping the body to clear itself.
eg infa red saunas, sweating....those sorts of things...hot and cold showers alternating...eek i know i'm a wimp too!! I have heard of a particular methodology but don't know if it would be advertising to mention it...but its a pretty sensible sounding method..just have to be given time. conventional doctors are catching up with the concept of de-toxing but seem to be going about it with too much vigour and too directed...the body is random and likes to decide what to remove...
i can pass on anymore via private messages. liz