Lichen Sclerosis

I only just now read her article when I saw your post and I must say I fully support her nine recommended steps. Although the last one about violent TV or movies would be a problem for me if she includes "video games"... ha ha ha ha... I play World of Warcraft and find it EXTREMELY relaxing and stress relieving, although it can be violent. Doom was that way for me too, where I am a lone good guy going around killing all the zombies that are attacking the planet. Something about fighting evil really calms my nerves after a stressful day.

But I digress.... sorry to hear you have Lichen Sclerosis. I have an extremely rare form of scleroderma that causes the same type of collagen deposition only on my chest instead of genitals. But according to the Mayo Clinic's paper on the subject, these are both grouped under the general umbrella of "scleroderma", the term which applies to ALL forms of the disease, limited, cutaneous, and systemic. Keep in mind that general medical usage defines "scleroderma" as the systemic form, but technically, the cutaneous and limited variety are also the same disease process, they just affect skin and outer tissues and leave internal organs alone.

It is true as Christine says that the data does not conclusively show that this is an autoimmune or infectious process. There is little data but there is not NO data. These diseases are VERY poorly understood. I think Christine is on to something in her article and I agree with her recommendations. Corticosteroids "may" limit some of the damage the disease does but the damage you open yourself up to using them long term is not worth the risk at all. In my opinion, these only should be used to stabilize disease that has become life or limb threatening.

The treatment as if it were an infectious process, however, is very safe. The NIH did complete a study which demonstrated that antibiotics can improve those with collagen vascular disorders (the umbrella term over the umbrella of scleroderma) but the MECHANISM by which it did that was NOT proven. One cannot assume the antibiotic does not have anti-inflammatory effects - or other actions - quite apart from it's ability to mediate organisms, therefore the NIH study result does not prove the disease is infectious in etiology.

There is a well known doctor in Maryland who specializes in treating CVDs and is on the leading edge of research into these disorders. (He's retiring now and I believe not taking new patients.) I traveled to consult with him and he prescribed Doxycycline for these types of disorders. Doxycycline is not a bacteriocidal antibiotic, so it does not have the problem of "creating super bugs" you hear so much about with other antibiotics, therefore it is very safe to take for long periods of time. It's action is bacteriostatic - it simply prevents the growth of bacteria.

I took that drug for several months and my scleroderma halted in its tracks and quit spreading. No I cannot prove it was the Doxycycline that stopped it. These diseases are notorious for stopping and starting on their own. And it certainly doesn't prove there was an infectious agent causing it. For all I know it was the placebo effect. But it DID work. My regular rheumatologist in town then took up the prescription and continued me on it, because he had read the NIH study and was willing to try it. (The NIH trial may have used minocycline, a similar antibiotic, I don't recall.) I've since stopped the doxycycline - I've been off it for a couple of years now, and the scleroderma seems to have remained dormant.

I am not sure, but I think doxycycline may have an ability to mediate levels of bioavailable androgens, which would fit very well into Christine's theory. Doing some on-the-fly googling here, I've already come up with several articles connecting this family of antibiotics (tetracyclines) to hormone mediation. Here are a couple of fascinating sites... I do not claim to understand what they're talking about, but it does seem to be saying there is action by these antibiotics on androgen. The antibiotic can either TURN ON OR TURN OFF the gene response to hormone production depending on I don't know what because I lack the education to decipher all this medicalese... ha ha.

Copied from the first site:

(if the following wall-of-text makes your eyeballs bleed, the pertinent sentence is this: "We show that (functional androgen receptor) expression in E19 cells can be precisely modulated by varying the concentration of tetracycline or its chemical derivative doxycycline in the growth media.")

"The androgen receptor (AR) is hormone-activated transcription factor that regulates the expression of genes involved in differentiation, development, and maintenance of male reproductive functions. To establish a useful model system for studying molecular mechanisms of AR action, we generated a HeLa-derived cell line (termed E19) that stably expresses human AR. Because overexpression of AR in cultured cells can be cytotoxic, we placed AR expression under the control of a tetracycline-regulated promoter. The stably expressed AR also contains an N-terminal FLAG-epitope tag (f:AR) that provides an advantageous method for immunopurification. We show that f:AR expression in E19 cells can be precisely modulated by varying the concentration of tetracycline or its chemical derivative doxycycline in the growth media. The functional activity of E19-expressed f:AR is demonstrated in vivo by its ability to activate transiently transfected AR reporter genes in an androgen-dependent manner, and in vitro by its ability to specifically bind AR-response elements using DNA-mobility shift assays. We further show that f:AR in androgen-stimulated E19 cells is markedly phosphorylated and coimmunopurifies with the transcriptional coactivator CREB-binding protein (CBP). The implications of these findings on steroid receptor research and the identification of receptor coregulatory factors will be discussed."

From: http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6W9V-45CWN9R-3...

And:

http://www.nature.com/jid/journal/v123/n2/full/5602436a.html

http://www.bios.net/daisy/promoters/271/272/g2/281.html (in plants but it does have a nifty chart showing both promoter and repressor actions of tetracycline.)

I have new and exciting info to share about this - but no time to write it out! Monday or Tues I will join in here and on the LSanswers site....C.

sorry, i'm down to half a sec here but..
you've read the paper, have you scanned through the forums on the LSanswers site?
some people have tried various things some with good results...i think the ways forward of trying to address this naturally depend a lot on your situation--age, other health issues etc...

but have a read there if you haven't...
sorry, really gotta run but wanted you to know you were being read and i'll write more very soon!!!

Kiki

Hi Nini,

Hope you don’t mind that I moved your topic over here.

As many women here know, I’ve been living with the disease, vulvar lichen sclerosis, for at least a couple of years. The main symptoms of LS are pain with contact, discoloration, paper-cut type lesions, intense itching and “architectural” changes.

Almost from the beginning I knew what I was dealing with was hormonal in nature. The largest group of LS sufferers are menopausal women, although many younger women have symptoms, as well as a small percentage of men (this group may be larger than we know - and growing) and a much smaller percentage of children, whose symptoms often disappear at puberty.

LS is certainly a disease state but I believe - to use diabetes as an example - there is a whole range of ‘normal’ before hypoglycemia is reached, and then full-blown disease. It is a long-standing hormonal and metabolic imbalance.

Of course, after my diagnosis I tore into the literature with a vengeance. Most of the studies and thinking on LS seemed unhelpful and even misguided, and it was only upon discovering recent scientific inquiry into Alzheimer’s disease that my eyes opened to the true nature of this disease.

Researchers have found that the precursor to our sex steroids, luteinizing hormone (LH), is very caustic to brain tissue when unbalanced by the antioxidant hormones estrogen and testosterone. It causes the brain to form “tangles” of destructive fibrotic tissue, which results in loss of brain function. Women develop ALZ earlier and more often than men.

I learned this at a time when I was experiencing what certainly felt like destruction of the nerve cells of my clitoris and vulva, and I thought “That’s interesting...where else in the body besides the brain is there a more dense cluster of nerve cells?”

Ever since, I’ve been trying to convince the LS world that the problem arises from this hormone imbalance. Menopausal women have lost the feedback loop of estrogen to LH so that LH levels skyrocket. LH is a very pro-inflammatory and pro-oxidative molecule and plays havoc with much of the body when imbalanced - many women have itchy skin lesions as well. Not fun!

After the holidays I got the bug to email one of the most prominent researchers into this LH-ALZ connection, telling him of my theory and sending along a paper I wrote. The paper can be downloaded from www.lsanswers.com. I received a reply almost immediately, which I will share with you here. I can’t in good faith give out his name, but did forward the email to Louise and Granolamom and Alemama. Here’s what he wrote:

"Hi Christine,

Yes, you have the answer.  I would suggest you take a GnRH agonist like leuprolide acetate (it acts as a potent antagonist, see attached review for mechanism of action) together with pregnenolone or progesterone (not medroxyprogesterone). The pregnenolone and progesterone will suppress LH/FSH levels somewhat since they negatively feedback on the pitutiatry and hypothalamus to decrease gonadotropin and GnRH production, respectively.  I suspect that the pregnenolone is suppressing your gonadotropin levels somewhat, but not sufficiently to completely aleviate the condition.  However, a GnRH agonist will solve that problem.  But since GnRH agonists also suppress sex steroid production, you should continue taking pregnenolone or progesterone.

I believe all women should be on progesterone/estradiol therapies post-menopuase.  There is a mountain of evidence indicating that they prevent and delay disease progression for AD, heat disease, stroke.  Only natural hormones (progesterone, 17-beta estradiol) should be used.  Not the conjugated equine estrogens found in Premarin or together with medroxyprogesterone in PremPro.  Those articfial forms of sex steroids will hasten age-related diseases.

I have cc'ed Dr. So-and-so, my colleague on this work, who might have other insights.

Best regards and remain proactive, you are on the right track!"

Although the validation was great, I do not necessarily agree with his advice and am still working through “What to do”.

What I do know is that the problem is deeper than even these researchers have expressed and anything we can do to calm and naturalize the body, the better. Many people with LS notice improvement by simply changing their diet so there is less stress on the system.

Anyway, I hope you find this of interest, Nini. You mentioned my “treatment”, of which there is none. I’ve found pregnenolone moderately helpful, but not the complete answer.

The drug this researcher is suggesting I take is not without serious side effects and therefore I’m experimenting with natural substances known to lower LH. I had great hope for red clover, for sheep become infertile by grazing too heavily on it because it lowers their LH. The problem is ingesting enough to make a difference. I’ve been taking quite a lot of dried flower and tincture and while I think my symptoms are slightly better, they are not resolved.

Will keep you posted!

Christine

sorry I didn't respond to the email yet. I have been thinking on it though. And like everything else I have to wonder why one woman experiences LS and another does not. I also have to wonder how old this condition is. One thought I had was to wonder if women who had pregnancies up until menopause and then were breastfeeding through this transition (the last child-you know the WHO average age to wean is 5 years- that would place you right through it) don't have it. Or do women experience LS through pregnancy and breastfeeding? Wouldn't it be cool if all you had to do was relactate....
I always have a time during pregnancy where I get itchy- and it isn't yeast- it comes on at night-I know it is hormonal-

I am so glad that you have a jumping off point for your research into this. Even if it takes years to figure it all out- your search will be so valuable.

Nini I am sorry you are dealing with this and happy you have found some other women to talk with about it.

sadly i think lots of women keep experiencing symptoms during pregnancy and breastfeeding... for many it lessens during preg, but returns soon after
but i agree, there must be a reason!
i still have absolutely no clue what my itching is about, which doesn't make it easy to know which direction to take forward. but as i'm still feeding i'm just hanging tight and figure when i eventually stop i'll experiment a bit more widely. perhaps when i find what helps it'll help me figure out the cause, be it perma thrush or LS or dermatitis or whatever...

looking forward to hearing your news Christine!

kiki

on the off chance does scalding hot water help? All it takes is a quick direct spray of the hottest my shower will get for about 2 min and all is well and i can go back to sleep. That and a mix of teatree oil with olive oil and GSE topically applied seem to help. I use the oil if I notice itchy feelings during the day.

I

Hey have you looked into the ways we influence hormone production in one another-
women in the same house all cycle at the same time
or suppression of menstruation of young girls for longer when the dad is very present in her life
ideas like that make me wonder if we lived communally would LS not exist?

Wow...the idea that (relative) isolation may have some effect on hormonal balance is a powerful one, Alemama. Don’t know, but I’ve often thought if I were able to live carefreely under the stars, forage a bountiful forest for food, and swim in the ocean each day my symptoms would disappear.

Like many women, I can harken back decades to make a hazy connection with symptoms that may have been hormonal, although at the time it was not even a consideration. It’s astonishing how delicate a dance reproductive health really is. We certainly don’t feel that way when we’re young, but it takes this transition to realize it was always a razor’s edge. You asked how long LS has been around...it was first described about ten years after Edison’s lightbulb came on the scene. And I can sit late at night (like now) under these fabulous halogen lights and literally observe my symptoms take hold. It’s a grand mystery.

Christine, you mention inflammation, and I agree with your reluctance to accept this doctor's hormonal recommendation. If inflammation is part of the process of LS, then that would also explain why Lupus, and other inflammatory conditions, also frequently present in middle-aged women. There is a lot of information about lifestyle and inflammation, especially the type of chronic, low-level inflammation, that is behind a lot of our contemporary illnesses, even heart disease, as an inflammatory process is suspected in artery plaque formation. Severely restricting simple carbs is one lifestyle change that is supposed to suppress inappropriate inflammation. I'm not sure the exact mechanism by which this works is understood; perhaps it too mediates hormone balances. Have you considered this approach?

Hi Anne,

Yes, I agree completely and have paid very close attention to food for decades. A true health-nut (I say that with all love and respect for folks like Ann Wigmore) might not be all that impressed with my diet, but it’s really about as healthy as I wish it to be. Somewhere between macrobiotic, raw food, vegan and (lately) Price, our food is as lively as we want it. I eat no sugar and my greatest indulges are green tea twice a day, the occasional glass of red wine, and infrequent restaurant fare - except for the Artisan pizza place that opened up a couple of months ago right across the street, which we seem to hit about once a week (goat cheese, leeks, wild mushrooms, etc!!) lol

Nothing that I’ve added to or subtracted from my diet has seemed to make a difference in my symptoms. Many people think wheat is a culprit in LS, but I just don’t see it in my case - but then I eat wheat very sparingly and always freshly ground. However, tea may indeed play a role, but I love it too much to give up. Tea time is a family ritual here that we all look forward to. Too much food is definitely something I have to watch, and with menopause has come the lovely metabolic curse of belly fat.

The research into LH seems to suggest that the hypothalamic-pituitary-gonadal axis controls just about everything from birth to death and is responsible for so much of the chronic disease that manifests as inflammatory processes. Why one person develops lupus and another rheumatoid arthritis is a mystery.

There’s no doubt stress plays a huge role in LS and, like prolapse, this latest challenge is an opportunity to better observe moment-to-moment and try to stay calm as much as possible. I can’t afford to come emotionally unglued anymore - which is really kind of a relief!

Nice to hear from you!

Christine

Needing to stay calm and not affording to come emotionally unglued anymore is SO true for me now too, I know just what you mean. I have no tolerance anymore for stress; I am convinced of the direct link between stress and physical disease.