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?
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.
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.
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?
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.
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?
Could there be some kind of answer hidden here, to find a solution to our problem?
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
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?
That's good news, Jenny. I think infections may trigger LS flares. I know my psoriasis flares when there's infection anywhere.
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.
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.
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!
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.
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.
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.
I'm glad to hear about the dilation, Hanny. That sounds less traumatic than surgery. Are you on stand-by to get in quickly? How are you doing with the problems peeing? Is he expecting a resolution of your symptoms with this procedure? I'm hopeful that you will be doing well after this!
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!
I'm fairly realistic, I think. LS is LS. When you have difficulties walking you get a cane, or other. When difficulties peeing you get dilation. But it will never cure LS of course. They are 'crutches.'
At the same time another biopsy will be done. According to the specialist - to make sure to know that nothing else is going on.
I'm getting a break from LS due to the anti-biotics. Pleasant for now. For the rest it will be a waiting game.
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'.