If LS is not a virus than what is in anti-biotics that can stop a flare-up?

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Recent experience with a severe flare-up that seemed unstoppable with the help of even Globetasol, was stopped by taking anti-biotics.  Do other people have a similar experience?  And does the medical world know that this is happening?

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  • Posted

    I suspect that the medical world, of which I am a member (for my sins) will respond as they always do and that is to call your experience of antibiotics seeming to cure Lichen Schlerosis as "anicdotal" only. Or the scientists will say that just because two events occure together does not mean that the one caused the other.

    If however several people reported a simular experience to yours then that might begin to change things. An interesting point you raise. Thank you.

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  • Posted

    Hanny, a year ago when I was diagnosed I had a raging infection that was cured with antibiotics, which kill bacteria, but not viruses. You had an infection in your urethral tract. Even yeast infections are called 'secondary infections' in realtion to LS.

    Unfortunatley the Clobetasol works gradually over a long period, as it has done very well for me. It does appear that there are several kinds of LS and yours is a fast one. When there are open lesions and raw flesh, it's an invitation to bacterial infection.

    As Andrew says, it's not one thing.

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    • Posted

      Meanwhile I have heard that in the Netherlands, the Lichen Sclerosis flare ups are treated by prescribing anti-biotics.  

      Andrew this says perhaps something already.  Morrell, indeed there is more than one kind of LS.  I started to notice that when you were describing yours.  Mine is the one that goes with thyroid and adrenal gland problems, yours is the one that goes with psoriasis.  There's two already.  Should they be treated the same? 

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    • Posted

      O, forgot to mention Morrell - there were no open lesions and raw flash. Just further fusions.  Nothing but further fusioning of the labia, the outer labia by now.  The urine collects behind the fusioned outer labia and gradually drains via the pin hole opening that is left.  (Not lined up with the urethra) The blatter still is emptied that way.  That is the amazing part.  Though I spend a lot of time in the bathroom accomplishing all. 
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    • Posted

      It was thought that bacteria had collected behind this 'stitched up' part for which I received the anti-biotics.  Indeed.  But the question remains:  Why did Globetasol no longer work as Dr. Goldstein claims that it should control the LS?  W|hat does anti-biotics do - treat the bacteria, than what is LS?
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    • Posted

      Could there be some kind of answer hidden here, to find a solution to our problem?

       

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    • Posted

      Clobetasol doesn't clear up infections, because it isn't meant to kill bacteria. It's meant to penetrate deep and strike at the inflammatory cells.

      So, inflammation and infection are two separate problems, but infection is more likely when there's a lot of inflammation. In your case the inflammation caused swelling, which held back urine, which invited bacteria. It's quite clear to me that clob isn't fast enough for some flare-ups and some versions of LS.

      Just as people like my mother had her rheumatoid arthritis slowed down by Prednisone (she always had to take more during a flare-up) but over decades she still suffered plenty of disfigurement. If she hadn't taken the Prednisone she would have been completely seized up by age 45. Thanks to the meds, she's still on her feet at age 87. Yes, there have been long-term side effects, but what can you do?

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  • Posted

    Since April of this year I have had to go on four different lots of antibiotics for urine infections and am glad to say my LS has disappeared for the time being
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    • Posted

      That's good news, Jenny. I think infections may trigger LS flares. I know my psoriasis flares when there's infection anywhere.

       

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    • Posted

      There is then a connection between the antibiotics and LS, somehow.  As Morrell's line of thought - inflammation causing swelling, obstruction created.  In my case fusing increased and that created the obstruction.  Till anti-biotic treatment there was no stopping the vicious process.  One could of course trigger the other.  But what could be the very item in this process that stops the LS in its tracks? This to me is an important aspect that could lead to finding some form of cure perhaps.   
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    • Posted

      I found this solid page on chronic inflammation by a physician on the Mayo Clinic's site. Pretty straightforward, really. The key phrase (at the end) is 'Stay tuned'.

      What you can do, though, is make a point to avoid certain things that cause inflammation and are proven unhealthy. Prime examples are smoking and excessive alcohol use.

      Some people advocate an "anti-inflammatory diet." Although there's less evidence such diets work to directly thwart inflammation, most of the recommended foods are typical of the Mediterranean style of eating and in principle are good choices. Key components of the Mediterranean diet include:

      Eating generous amounts of fruits and vegetables

      Consuming healthy fats, such as olive oil and canola oil

      Eating small portions of nuts

      For some, drinking red wine in moderation

      Eating fish on a regular basis

      Consuming very little red meat

      ...

      And then there's the huge area of dietary supplements, which is largely uncharted when it comes to carefully done clinical trials for safety and effectiveness. Unlike prescription drugs, dietary supplements are not regulated by the Food and Drug Administration for safety and effectiveness. With that caveat, here are some that may be of interest:

      Cat's claw (Uncaria tomentosa) — Limited studies indicate modest benefits for easing rheumatoid arthritis joint pain and osteoarthritis knee pain during activity, but more studies are needed before its use can be recommended.

      Devil's claw (Harpagophytum procumbens) — Studies suggest devil's claw is effective in the short-term treatment of osteoarthritic pain. It's used extensively in Europe as an anti-inflammatory agent.

      Mangosteen (Garcinia mangostana) — It's credited with anti-allergy, antibacterial, antifungal, antihistamine and anti-inflammatory qualities, and even as a possible cancer treatment. But high-quality human trials are still lacking that support its effectiveness or safety.

      Milk thistle (Silybum marianum) — Milk thistle appears to protect the liver and block or remove harmful substances from the organ. Although more study is needed, it appears to improve organ function in people with cirrhosis, a chronic liver disease. It may also be helpful in treating chronic hepatitis. More research is needed before any specific recommendations for its use can be made.

      My best advice concerning chronic inflammation is to stay tuned. This is a huge area of interest in the medical world and there are bound to be discoveries down the road that can improve well-being and the quality of health.

      So, even though it's discouraging that nobody's doing specific reasearch on curing LS, there's a LOT of study of chronic inflammation. So, eventually we should benefit from that.

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    • Posted

      Yes, I believe that your conclusion is correct here that inflammation causes swelling or obstruction which can set the stage for infections of various kinds (which may require antibiotics).  That may be why some of us are more prone to UTI's with LS affecting the urethra, and infections caused by fusing.   

      What could stop LS in its tracks?  That's the jackpot question, and it's generating a lot of research and speculation in regards to autoimmune diseases in general right now.  Since I have several autoimmune disorders, not just LS, the answer to what causes autoimmune disorders can't come too quickly for me!

      Good luck, Hanny!  I hope that you get some relief soon with being able to pee! 

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  • Posted

    Suzanne, Morrell,

    Just came back from the specialist.  Since the blatter is in good shape it will be left alone.  It's of course the fusing that needs to be dealt with.  The word is: Dilation of the small opening in the outer fused Labia.  Didn't sound like the man knew about the effect of anti-biotics on LS.  I just added my two cents worth, expressing also that it all is still a mystery.  He seemed to agree.  Nice enough guy.  (Anyone having experience with dilation of part of the fused area?)  First part will be done with full anestetics (spelling?)  Day surgery, it's called and put on the list of urgent. The rest is a 'do it yourself' situation to keep that opening open.  

    I told him about this forum and how helpful and supportive it has been.  He could understand it would be.  He told me about an eighty year old woman who was helped the same way and was doing okay.  (No, I'm not by far eighty year old.) (ha)

    Anyone with extra thoughts or knowledge on the matter, please tell me. 

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    • Posted

      Well, Hanny, I think that's sort of good news. Dialtion sounds like it will accomplish something without cutting. I'm thinking about the warm oil massages midwives do to get ready for BIG dilation. I know I can't handle much in the way of 'massage' myself before it becomes Friction, but I do kind of think warm oil could facilitate the do-it-yourself part. You're in fairly uncharted territory.

      I wonder if the doctor would ask that lady if she'd be willing to speak with you.

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    • Posted

      You made a good suggestion, Morrell, I was thinking that as well, but did not ask for a possibility to connect with this lady. Maybe I was thinking about the confidenciality a doctor has to keep.  Also  I think because I first had to get my head around it all.  We'll see. 

      Interesting detail - the oil massages.  

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    • Posted

      I read up on this yesterday. It's interesting that there's no mention of LS in any of the items I found about dilation and pinhole urination. It's all called 'hypoestrogenism'. When I refused HRT, my GP did not mention this sort of dire outcome. I thought I'd just need extra lubricants for sex. I no longer have my old copy of Our Bodies, Ourselves, but if anyone does, I'd really like to know what it says about post-menopausal changes.

      Anyway, all the articles said it's much better to do dilation, because if there's been a surgical opening and re-closure, dilation is out of the question.

      Hanny, I believe with Clobetasol and a tolerable estrogen cream, you'll be able to create and keep a functional opening. Very optimistic!

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    • Posted

      Thank you Morrell, that's helpful to know, an extra reassurance.  It's indeed what I heard yesterday.  

      There is that as well - post-menopausal changes.  I've had a total hysterectomy when I was 42.  Instand menopause, one would say.  It is not known to me how the menopause will settle in under such circumstances, that is, in comparison to a more natural way.

      In our struggle with LS some aspects of meno-pause could easily be overlooked. Some things might be considered 'a normal development'.   

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    • Posted

      Hi Morrell, just a few thoughts concerning low estrogen--Post-menopausal changes can be pervasive, even if we are just looking at the genitalia--from atrophy, shortening of the vagina, and thinning of the tissues, to prolapses of the bladder, rectum, cervix, to proneness to UTI's. As women age, these changes are more likely to become permanent.  Some women are accepting of the changes and are okay with them.  LS can make things even worse. I am concerned especially with the possibility of increased UTI's with menopause because I am allergic to most antibiotics, so that is one of many reasons that I appreciate the opportunity to use estrogen cream on these tissues, and hopefully prevent some of the other changes that occur, as well. Are you still considering supplementing?
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    • Posted

      That's so amazing. When I told the specialist that I had supplemented Premarin with Bi-est and the reason why, the specialist said that he had never heard of Premarin affecting a person mentally.  However, it is known in Nature Path circles that Premarin does affect you mentally. That is, if your system is sensitive in that way.  However, one needs to be the wiser one and 'shut up' at that point, while at a doctor's appointment.  You're not there to argue.  Perhaps the patient is listened to after all.  One never knows.  
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    • Posted

      Do you have any thoughts about whether to try the bioidentical Bi-Est cream?  I definitely react better to the chemically "natural" cream than to any others that I've been prescribed.  That may be one more option to consider if you are motivated to try a low dose of estrogen again.
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    • Posted

      I may talk to the pharmacist I like here in the village. My good friend who's got multiple problems, forwards Dr. Mercoka all the time, takes lots of supplements – she has to go to the city (two hours away) to get bio-identical hormones.

      When I was on birth control pills I was on the edge of suicidal, so I don't think it's just this particular cream.

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    • Posted

      I took high doses of birth control pills from the age of 15-22 because of polycystic ovaries.  I felt terrible and depressed a lot of that time too, sometimes severely so. I also had blood sugar dysregulation on the pills, yeast infections, bloating, headaches, and no libido. I felt much better off of them.  I don't have that reaction to the bioidentical creams. 
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    • Posted

      Suzanne, the truth of it is, I don't believe for a minute that anything will open my vagina up enough to have intercourse. It's been a tight squeeze for five years (and maybe the seven before that, while I was celibate). Honestly I'm relieved to have an affectionate relationship without the haunting pressure of sex. My attitude to sex is pretty messed up after forty years of painful sex and men who didn't care. I suspect I'm naturally low on the libido scale. Life is good now and I believe my husband – in his late sixties and not exactly Mister Ever Ready seems kind of relieved and content, too. There was an element of performance in the relationship during the three years we had intercourse, that I don't miss. Maybe I'm just getting old and philosophical.

      Still, Suzanne, this is good advice to have here in the threads, for the many women who are hoping to get back to normal.

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    • Posted

      These are good points, but I'd like to clarify that I use bioidenticals not for sex (though they do help there, too).  I use them for maintaining the health of my vulva and vagina with the signifcant problems that can occur with aging and menopause, and also for the health benefits systemically for my skin, heart, bones, and breasts.  I respect your decision though.  Thanks for exploring and sharing your experiences and conclusions.  
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    • Posted

      I see what you mean more clearly now. Thirteen years ago I made the choice not to take anything after menopause. I did, however, leave my city career and moved to the country at age 53. Clean air, pure water, homegrown veggies, local organic foods, plenty of physical work and walking, and a calm life in a friendly like-minded community are doing plenty for my general health which is perfect except for LS. Certainly I know I'm extremely fortunate to be free to exercise these options.
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    • Posted

      I think Hanny's life is quite a bit like mine, so it doesn't mean everyone should ditch their jobs and head for the sticks!
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    • Posted

      That sounds funny Morrell.  "Heading for the sticks."  We chose for living off the land as well.  Eating our own produce for years.  And still I got LS (ha) ( I've been living this life since age 36.)  A full time job, growing, freezing, canning, drying.  I do less now.  And certainly don't know whether it made a difference healthwise.  Perhaps I would have been worse without it.  Very hard to tell. Lifestyle, food intake, living in a poluted environment or not .... does that add up to LS?   
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    • Posted

      Hi Morrell,

      High androgen levels might be worth considering if you are suffering from a sense that the hormonal 'orchestra' is out of tune.... 

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    • Posted

      Hi Marey,

      Been back for a while already. Had a good time, good weather etc. Now preparing for hospital 'visit'.  All is meanwhile in place for the procedure. It is called: dilation.  Let's hope it will make my life a bit more liveable than what it is at present.  We were running out of options in the end.  Ended up on the urgent list.  Oct 6 is my hospital date. 

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    • Posted

      so glad you had a good holiday! very fortifying to be able to get away and prob just what you needed! 

      I wish you all the luck for your proceedure and appreciate the thought you put into that decision...glad to know the matter is being expedited and I will think of you on the 6th. Just writing it to my diary. Loads of love hanny 

      from marey x

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    • Posted

      welcome! here for you even if not always on-line....and sometimes taking a back seat !!
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