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seeking cure for lichens-research

Hello, Before I was diagnosed with LS, I was diagnosed with several other things. Mostly yeast infections, then a gyn did a biopsy in my vaginal area and said it came back lichens simplex chronicus. He started me on steroid creams which only thinned the skin more. About a year later, another gyn did a biopsy on a small spot on my back and sent it off and said it came back morphea. Now if you think LS is scary, just read up about morphea- which is so rare, it's hardly ever diagnosed. However, I was not convinced so upon my regular visit to my dermatologist, I showed him the spot, then he asked if I had them elsewhere and I reluctantly let him examine my vulvular areas and he immediately said it was LS. In fact, he went and got both previous biopsies and sent them both to a lab in CA and both came back LS. No simplex chronicus, no morphea, nada. I began a treatment using a special cream formulated by him, lots of vitamin A, Vitamin E, and a minimal amount of testosterone all compounded by a special pharmacy. It did help, for a while. I continued researching though, as I have for years now, and like many of you, are very frustrated that so little is known about the causes of LS, and so many prescriptions are being written and tried and no one knows the real answers. Retracing my medical mihaps, I believe I have had this for some time, and only in the last year has it gotten really worse. I had spots on my neck, and now on my breasts, upper arms, and where my bra straps rest. In fact, it seems I may get a spot anywhere heat is trapped on my body. I tried aloe straight from the plant which I keep in my bathroom on several of the spots on my neck, and they completely went away. I even tried some of this fresh sap on the vaginal area, but don't think it helped much there. I have definitely noticed a relation to the amount of stress in my life, to the amount of outbreaks ( patches.) What I believe is needed now more than ever, is a well-defined checklist of medical histories and symtoms, from a large group of women, that can be analyzed to find similarities, etc. For instance, in my research I'm finding that many women with LS have high stress levels, and also have some stomach/gastrointestinal problems. If any of you are interested in helping me put together a real study, please email me. I don't think any large drug manufacturer or college program is going to study this diseases, because there's not enought money in it for them. Let's start our own research group. Then we can present our findings to a research center or large medical university and demand it be taken seriously. My dermatologist says that up until a couple of years ago he'd only seen one or two cases of LS, but that now, he has several patients. Something is amiss ladies, and I think it's going to be up to us to help ourselves as much as possible. Thanks for your testimonies and if you are interested in helping complile a profile for LS sufferers to complete, please enter a reply post. Since we are not allowed to post email addresses, we will need to establish a web site.
 
  mirrormirror on 2006-02-21
This is just a forum. Assume posts are not from medical professionals.
1.Name --------------
2.Address------------
3. City---------------
4.Country---------------
5.Phone---------------
6 Mobile---------------
7.Email ---------------
8.Age- /current height/ current weight
9.Male/Female---------------
10.Weight---------------
11.Height---------------
12.What are you doing at present................................
13..Single/Married/Separated/Divorced/Widow/widower---------------
1. What exactly is happening ?
2. How do you feel ?
3. How does this affect you ?
4. How does it feel like ?
5. What comes to your mind ?
6. One situation that had a big effect on you ?
7. How did that feel like ?
8. What sensation do you experience in that situation ?
9. What are you showing by that gesture of your hand. ?
14. current medicine you are taking
15.Describe your Past complain/Any surgery-
16.Write your pathological report (Blood test Ultrasonography / MIR/ X-ray, if any (optional) if any.--------------..
17.High Blood Pressure Continue from and current B.P.---------------
18.If any heart Disease
19 Name of medicine using currently-------
20.If Diabetic Patient/Nme of medicine---------------
21.Insulin Dependent/Doses---------------
22.Detail about Operation/Surgery if any ---------------
23.Thyroid Problem if any T3/T4/TSH---------------
24.Female
a Any Gynecology Problem (Write in Detail) --------------
b. Is there is any pain in the Breast before menses---------------
c. Is there is any Tumor/Fibroid/ in Breast/Uterus---------------
d. Is there is White discharge (Leucorrhoea)---------------
e. Is there is pain during mating------------------
f. Is there is habit of Masturbation----------------
g. About Your sexual desire increased/absent/normal---------
h. Is there is any itching/scratching of your gyneic area--------
i. Flow of your menses-------------


25. Male
a. Is there is any infection/ulceration/eruption on your pubis
b. is there is any seminal discharge during stool
c. Is there is any discharge during talking from female
d. Is there is any itching/scratching on groin region
e. About Your sexual desire increased/absent/normal---------


26.Gastritis---------------
27.Joints pain---------------
28.Swelling---------------
29.Any Other Disease---------------
30. About Your sexual desire increased/absent/normal--------------
31.Choose your nature from following word ---------------
Mental Symptoms:-(Compulsory)-Morose, Quarrelsome, Hasty, Lachrymose, Anxious, Delirious, Groping, Despairing, Sad, Hopeful, Fearful, Restless, Calm, Drowsy, dullness, Anger, Being overwhelmed, Depression and gloom Despair and faithlessness , Despondency from overwork, Domination of others, Doubt or Discouragement, Easy impressionability, Fear and Shyness, Fear for the others welfare, Fear of losing mental balance, Feeling of powerlessness, Guilty and self-blame, Hard master onto oneself with an urge to inspire others, Hopelessness, Immaturity of Mind/Emotions, failure to learn from mistakes impatience, indecision in difference or boredom Intolerance and criticism lack of mental tranquility, lack of motivation and incentive longing for past happiness, nostsliqia, low self-confidence, Mental Fatigue, Mental torture or worry, Mental/emotional and physical weariness, Overcome for welfare of others, Overenthsiasm, Pride or aloofness, Resentment and bitterness, Sadness, greif, shock, Self centered talkativeness, Self-distrust, Shame or feelings of un cleanliness, Terror, jealousy, Weakness too willing , Fear from known thing, fear from unknown thing.

32.(in case of married) Is there your husband/Wife is cooperating to you or not any friction write in detail------------------

33. What is your current anxiety in your mind (compulsory)- Write in detail--------------

34. How you will be deference from other person or What is your peculiarity in nature--------------

35. Can you give speech to the public meeting-------------

Photographs of the current Disease can be sent by email separately on (optional)
 
deoshlok last decade
This is not the kind of information of which I was thinking in seeking comparative data. It's too detailed and not focused on LS. I am quite sure that any woman who suffers with LS has a broad range of negative emotions concerning it, however, LS is not a mental disease. It is a physical diseases with perhaps underlying emotional/mental factors affecting the degree of disease, but your questions do not satisfy the facts for which we are searching. And names are definitely not necessary for a survey. What we need would include age, age at which LS was first diagnosed, age at which LS was first suspected, other current medical conditions, shot records, such as did anyone recieve vaccines or tetnus or flu or any kind of shot that generally does not produce side effects that have been noted other than those common. Also celestone or other steroid treatment given.
Also it might be of real importance to know if all LS sufferers are experiencing some sort of gastrointestinal problems. Any food allergies? Any recent food intolerances or new allergies? I am not convinced that LS is an auto-immune disease, I think there could be a common factor causing this and that perhaps it could be discovered. Further, judging from your many mispelled words and incorrect use of grammar, I have my doubts as to your qualifications in asking any of these questions. You may of course respond and validate your reasons for such a survey as you have suggested. Thank you.
 
mirrormirror last decade
hi, i'nm new to forums and am clueless. i'm trying to reply to mirrormirror regarding lichens research.?? I've had it for 20 years. and also have some food intolerances. (dairy started around 20 years ago also). how do we communicate? through this forum?
 
scotchbonnet last decade

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