Balanitis Lichen Sclerosus

[Nstocks]

The lesions have spread by around 20% and remain mostly cosmetic. However, two days ago, almost an overnight I developed at appears to be an ulcer on the glans which is/was bleeding and painful.

I saw my GP yesterday who said he can't fully diagnose the issue. He prescribe me with doxycycline (100mg per day for 15 days) and has ordered a basic blood test. He said to come back in 3 weeks and if nothing has changed will put me on oral steroids.

He came to the same conclusion of it being an auto-immune response and inflammation but couldn't help anymore and explained there is no single test for these problems which I agree.

In my position, would seeking private healthcare be worthwhile or wait it out in the understanding it is likely to come back anyway? I haven't has sex in almost 1 year, maintain good hygiene, eat fairly well, no alcohol, drugs, smoking and 7 hours sleep. Stress with work, living at home situation and other things are a concern, however.

 

[ecstatichamster]

This can be virtually incurable with conventional medicine.

.5% methylene blue seems to work very well applied topically though.

Red light is very helpful too.

I wonder if this is some sort of virus.

 

[Nstocks]

I've come across the following page which also states the use of MB :My anti-herpes virus regimen (my condition is undiagnosed but still)

I have a red light and was using it for 30 seconds per day every 3 days for the past 4 months with no luck.

If it's a virus and antibiotics are not for viruses is it something I may overcome through supporting my immune system?

 

[ecstatichamster]

Methylene blue is the only thing I’ve found that helps. Red light helps a little. Dilute solution with an aspirin tablet helps too.

 

[Nstocks]

I'll look into it some more and wait for this open sore to heal. The glans issue literally came about 2 days ago, no idea what has caused it but it's painful as you can imagine!

 

[ecstatichamster]

Put progesterone on it. Don’t be afraid of progesterone on the penis. It helps healing and immediately stops the pain.

 

[Nstocks]

I'm at the Hospital in a couple of weeks to see a skin specialist. I've noticed that the issue either on the glans or shaft is not always visible ut hopefully they will still be able to help. It's painful during masturbation and obviously sex is out of the question. Just recently I've noticed a slightly yeast like odour too. Always wash twice a day with warm water, clean underwear and bedding etc. I"m wondering if it's some sort of candida?

My Doctor has said before he doubts the Hospital will be of any help but did say that he may put me on a longer course of antibiotics...

Do you have any references for progesterone for this sort of thing? I believe it's internal issues (like acne) and creams won't get to the root issue, whatever that might be

 

[ecstatichamster]

Methylene blue is very effective

Followed by progesterone

 

[saene]

There was a post in the grant genereaux thread about i think a lady who sounded like she has a similar problem which got much better with lower a diet and some other stuff, maybe worth looking into. I think it was @Blossom who posted it for someone else to remain anonymous. Good luck to you.

 

[Blossom]

Anonymous conversation from a forum member:

Hi Blossom, I have been reading the thread and GGenereaux's books, thanks to Franco. He is being torn up on the thread I cant even read it all. Kudos to you for speaking up kindly in defense. I am too sensitive to post ever again publicly about my auto immune condition. This is a long note please forgive me, but I saw you used Retin A too and have autoimmunity. Disease came on suddenly a little over 4 years ago, in winter, as Generaux referred to in his books.

I too have used Retin-A prescribed like candy for wrinkles, and skin care with Retinol (hard to avoid it) Plus low fat dairy- Vitamin A added, and seasonal fruits, veggies. Took my vitamins and this terrible auto immune disorder hit fast, literally overnight, later in life.
Although I have also had eczema since my 20s in the 70s-80s LONG before retin A. Grew up with Peat style food, fresh dairy- family had a farm. Local grass fed beef. BUT the family always had margarine (added A) butter could not be eaten with meat.
My son has severe, disfiguring eczema on his face and scalp. Since birth. He is 29 now.
He and I are trying A depletion and if you would like to know what happens I will write to you, but not on the forum
The only things that make sense to me are
1) we are all different
2) the possibility that Glysophate does somehow disturb the body's natural detoxification of vitamin A
3) The A we were exposed to with Retin A from a lab doesn't quite match the natural molecules. Maybe destroys proteins? I don't know. I am not a scientist. Accutane is a different form but is known to cause birth defects.
I have also been recently doing a Seneff/Samsel style detox for 58 days with probiotic, sauerkraut juice, all organic food. I know its not Peaty but I had a horrible flare up 2 months ago.
The uncurable disease has an incredible remarkable remission the last few weeks...almost there, no medication used. Things have improved I was told would never happen, even by the daughter in law of Caldwell Esselstyn. She's a physician, got me off seed oils 3 years ago, but there was still omega 6 in the food. No recovery. I had hoped Peating would be the answer but no luck, even with quality farmed grass fed meat and liver, grass fed and finished raw milk, grass fed Vital Proteins,collagen. No luck.
I have been Peating over a year this way, lots of strength,- no recovery. Ive pretty much given up and long term recovery.
Franco /Generaux caught my eye on the email we got Sunday. top topics. I had seen 5 physicians including specialist, suffered over 4 years, lost my marriage, NONE explained to me why the sudden onset of this auto immune condition. Every one of them brushed it off. Said It's age. Generaux explains it easily but I am shutting my mouth. Again Kudos to you for speaking up politely and hopefully you are in remission.
Sorry to bother you but as I am older I cant cope with the attacks and don't want to go public with the nature of the disease, I had referred to it in prior threads where I went on a no fat diet. It didn't help much. The only thing that had given me any relief has been the last 58 days taking probiotics, sauerkraut juice. Seneff crazy? Maybe not, I cant believe my own eyes . If I posted this there would be brutal attacks.
EVERYTHING Generaux wrote makes sense about the onset and expression of this disease. Everything.

I have a topnotch eye doctor Francis Falck in Mystic Ct and will also go see him in 2 months..vitamin A is in breast milk and infant needs are different there may be sound reason species are weaned.

I never had a bad menopause, it was 8 yrs later, literally woke up one day with ulcers down there, excruciating burning pain, that progressed to ? lichen sclerosus. Biopsy did not confirm it, it was inflammation of unknown origin. I was told its normal, due to the decline in estrogen. I refused treatment.
No explanation as to the overnight occurrence, 5 drs, 4 years of searching for answers. Divorce. Two monthsago my privates were being buried in scar tissue, red sores,white skin. Today they look completely normal. ? Grant saw the glysophate connection too- part of the picture Seneff says they interfere with vitamin A detoxification.
I suspected oxylates too, thank you for seeing that,because this started while I was having green soups with leeks, collards, kale, broth. Mainstream medicine wont touch it.
I joined the low ox groups on Yahoo and Facebook 4 yrs ago. Tried it 2 years, no change. I didn't know the vitamin A piece. Still had low ox veggies, fruit AND lived on low fat Milk (Vitamin A fortified, by law) and grass butter. Low histamine stuff.
I found the Peat Forum somehow, a year and a half ago. Tried progest-E No help. Over time became semi normal, but the white skin stayed. And the milk broke me out, so I have been on Tretinoin.. I was told again Clobetasol. I was told the thick white skin would never change. I found a boyfriend. But the skin tore, bled and seemed to dissolve if I tried to have a normal life. Raw skin inside. Again was told I need estrogen, use the Clob or would lose my privates. Can progress to Cancer
It was the Seneff detox that started the only help I've had. White skin has retreated in 59 days. It could be the sulfur in the detox helping, plus low ox with sulfur. She recommends glycine as well.
When I saw Frankos post, I read Grants books thru the night and it was like hearing angels sing, ALL the pieces fell into place. Im 3 days doing this and would be thrilled if IC went away too- and as you have suffered with the other you know exactly where I'm coming from. I really didn't give a damn if no A harmed me.
I will rewrite you with improvements I KNOW will come. The pieces fit together exactly. If you want to post anonymously if it will help another woman or caring spouse that's ok. A lot of the women in the Lichen Sclerosus support groups are very young, I can't imagine what you have been through or what some go through having children. I was 58 at the start of it, no prior problem ever.

There was a post in the grant genereaux thread about i think a lady who sounded like she has a similar problem which got much better with lower a diet and some other stuff, maybe worth looking into. I think it was @Blossom who posted it for someone else to remain anonymous. Good luck to you.

Thanks for the alert. I quoted the post.

 

[Nstocks]

Thanks for the alert. I quoted the post.

Whoa, that's a long time with LS and it sounds terrible. My own doctor told me there is no cure, nobody knows what the issue is and standard procedure is to apply some flammable hydrocortisone cream.

I've been without greens for long time, occasional salad perhaps one a week so I don't believe oxalates are the issue here. I dropped all dairy for the past 6 months or so and have been avoiding Vit A for around 3 months.

Up until having issues down there, my diet has been fairly consistent for the past 2.5 years, carrot salad on and off and same with raw goat dairy. It's only since a trip to Amsterdam last November that I started having problems that so far steroid cream has helped with (LS), but other things are going on down there besides LS - on the shaft it looks like HPV. I came across this thread showing something very similar to what I have:

WARNING: ADULT NUDITY Smooth pinkish mark on penis. Irritation? Scarring?

The light pink marks on the shaft, although have spread are not much bother. However, I've abstained from sex for the better part of 12 months and masturbation is painful; it feels like I have a lot of small cuts on the glans.

I have another dental cavity which is likely to lead to a third tooth extraction in the past 18 months, although I admit avoiding fluoride for 5+ years was probably not the right thing to do.

 

[Tristan Loscha]

Whoa, that's a long time with LS and it sounds terrible. My own doctor told me there is no cure, nobody knows what the issue is and standard procedure is to apply some flammable hydrocortisone cream.

I've been without greens for long time, occasional salad perhaps one a week so I don't believe oxalates are the issue here. I dropped all dairy for the past 6 months or so and have been avoiding Vit A for around 3 months.

Up until having issues down there, my diet has been fairly consistent for the past 2.5 years, carrot salad on and off and same with raw goat dairy. It's only since a trip to Amsterdam last November that I started having problems that so far steroid cream has helped with (LS), but other things are going on down there besides LS - on the shaft it looks like HPV. I came across this thread showing something very similar to what I have:

WARNING: ADULT NUDITY Smooth pinkish mark on penis. Irritation? Scarring?

The light pink marks on the shaft, although have spread are not much bother. However, I've abstained from sex for the better part of 12 months and masturbation is painful; it feels like I have a lot of small cuts on the glans.

I have another dental cavity which is likely to lead to a third tooth extraction in the past 18 months, although I admit avoiding fluoride for 5+ years was probably not the right thing to do.

I dont know anything,but i looked it up and it is associated with Th17-IL17 Pathology.
There is an understanding that an excess of salt which gets easily accrued by around 30% of the populace
polarizes "naive" Th-cells (T helper) to Th17 phenotype.A lot of mystery-diseases have Th17 pathology in common,
and around 10 to20% of the populace of advanced western societies have inflammatory conditions of unknown origin.
i would avoid NaCl to a dosage of no more than 2-3g a day from all sources.Good Luck.

Implications of Th1 and Th17 cells in pathogenesis of oral lichen planus


[URL='https://link.springer.com/article/10.1007/s00403-013-1429-3']Expression of Foxp3 and interleukin-17 in lichen planus lesions with emphasis on difference in oral and cutaneous variants
[/URL]


Arch Dermatol Res. 2014 Jul;306(5):441-6. doi: 10.1007/s00403-013-1429-3. Epub 2013 Nov 29.
Expression of Foxp3 and interleukin-17 in lichen planus lesions with emphasis on difference in oral and cutaneous variants.
Shen Z1, Gao X, Ma L, Zhou Z, Shen X, Liu W.
Author information
1
Department of Dermatology, Ninth People's Hospital, Shanghai Jiao Tong University School of Medicine, 639 Zhizaoju Road, Shanghai, 200011, China.
Abstract
Foxp3 is a specific marker for regulatory T cells (Tregs), and interleukin (IL)-17 is the signature cytokine of T-helper (Th) 17 cells. Recent studies suggested that Foxp3+ Tregs and IL-17+ Th17 cells may be involved in pathogenesis of lichen planus (LP). The objectives of this study were to examine the immunoexpression of Foxp3 and IL-17 in archival paraffin-embedded biopsy specimens from 80 cases of LP (oral LP, n = 42; cutaneous LP, n = 38) and compare against normal control tissues (oral mucosa, n = 10; skin, n = 10). The results showed that the mean number of Foxp3 and IL-17 expression in LP was significantly higher compared to controls, respectively (both P < 0.001). A positive correlation between Foxp3 and IL-17 expression (r = 0.273; P = 0.014) was observed. Moreover, the mean number of Foxp3 expression in oral LP was significantly higher than cutaneous LP (P < 0.001). Collectively, our findings demonstrated the increased expression of Foxp3 and IL-17 in LP lesions including oral and cutaneous variants. Foxp3 expressing in oral LP was higher than cutaneous LP, which may be associated with the difference in clinical behaviour of the two variants of the disease. Further studies are required to investigate the immunopathologic mechanisms and therapeutic target of Foxp3+ Tregs and IL-17+ Th17 cells in LP.

https://link.springer.com/article/10.1007/s11596-012-0078-7

 

[Tristan Loscha]

Whoa, that's a long time with LS and it sounds terrible. My own doctor told me there is no cure, nobody knows what the issue is and standard procedure is to apply some flammable hydrocortisone cream.

I've been without greens for long time, occasional salad perhaps one a week so I don't believe oxalates are the issue here. I dropped all dairy for the past 6 months or so and have been avoiding Vit A for around 3 months.

Up until having issues down there, my diet has been fairly consistent for the past 2.5 years, carrot salad on and off and same with raw goat dairy. It's only since a trip to Amsterdam last November that I started having problems that so far steroid cream has helped with (LS), but other things are going on down there besides LS - on the shaft it looks like HPV. I came across this thread showing something very similar to what I have:

WARNING: ADULT NUDITY Smooth pinkish mark on penis. Irritation? Scarring?

The light pink marks on the shaft, although have spread are not much bother. However, I've abstained from sex for the better part of 12 months and masturbation is painful; it feels like I have a lot of small cuts on the glans.

I have another dental cavity which is likely to lead to a third tooth extraction in the past 18 months, although I admit avoiding fluoride for 5+ years was probably not the right thing to do.

Raw Goat Diary.I would avoid all hormone and bacterial-infestation stuff like milk at all.

Treatment of lichen sclerosus with antibiotics.
Shelley WB1, Shelley ED, Amurao CV.
Author information
1
Division of Dermatology, Department of Medicine, Medical University of Ohio, Ohio 43614-5809, USA. [email protected]
Abstract
Current therapy for lichen sclerosus centers on topical steroids, particularly clobetasol propionate. As some evidence suggests an infectious etiology owing to Borrelia, we studied the effect of penicillin and cephalosporin therapy on patients with lichen sclerosus who had responded poorly to treatment with potent topical corticosteroids. Fifteen patients with lichen sclerosus were treated for 3-21 months with either penicillin or cephalosporins in an observational study. Thirteen patients (nine women, four men) received penicillin, including intramuscular penicillin G benzathine suspension and/or oral penicillin V potassium, amoxicillin, or amoxicillin/clavulanate potassium. Two additional men received cephalosporins, either intramuscular ceftriaxone sodium or oral cefadroxil monohydrate. All patients showed a significant response, evident within a few weeks. Most striking was the rapid relief of pain, pruritus and burning. Four patients cleared completely, four experienced marked improvement, and the remaining seven had a favorable improvement of symptoms with incomplete clearing of lesions. We recommend treatment of lichen sclerosus with either intramuscular ceftriaxone every 3 weeks or intramuscular penicillin every 2-3 weeks. The addition of oral penicillin or cephalosporin presumably helps maintain antibiotic blood levels and may be a sufficient treatment in some cases.






Pimecrolimus for the treatment of vulvar lichen sclerosus: a report of 4 cases.
AT Goldstein, SC Marinoff… - The Journal of …, 2004 - europepmc.org
… Two patients had repeat vulvar biopsies at the end of treatment that showed reversal of the
histologic changes of lichen sclerosus. CONCLUSION: In this small series, pimecrolimus
appeared to be a safe and effective treatment of vulvar lichen sclerosus

 

[UG Krishnamurti]

This can be virtually incurable with conventional medicine.

.5% methylene blue seems to work very well applied topically though.

Red light is very helpful too.

I wonder if this is some sort of virus.

Methylene blue caused me to get extreme Paraphimosis [Where the foreskin is inflamed and you cannot more it over your penis]. It's inflamed, red, bloody and the inflamed tissue is the size of small apricot. And I don't know what to do now. I'm using olive oil at the moment. If I go to the doctor they will circumcise me probably.

Any suggestions?

 

[Lee Simeon]

Methylene blue caused me to get extreme Paraphimosis [Where the foreskin is inflamed and you cannot more it over your penis]. It's inflamed, red, bloody and the inflamed tissue is the size of small apricot. And I don't know what to do now. I'm using olive oil at the moment. If I go to the doctor they will circumcise me probably.

Any suggestions?

Have you tried simulating circumsission?

 

[UG Krishnamurti]

Have you tried simulating circumsission?

No. I would like to avoid any circumcision.

 

[Lee Simeon]

No. I would like to avoid any circumcision.

I think its a temporary solution where you do it for a few weeks without going under the knife. I have not tried it myself but have seen several people on reddit been cured from it.

 

[Lee Simeon]

No. I would like to avoid any circumcision.

Did you try cortisone btw?

 

[UG Krishnamurti]

Did you try cortisone btw?

No. Just got back from the doctor they gave me ciprofloxacin and some other drug forgot the name I will edit it soon.
They also want me to do the circumcision.

 

[Lee Simeon]

No. Just got back from the doctor they gave me ciprofloxacin and some other drug forgot the name I will edit it soon.
They also want me to do the circumcision.

Please keep me updated on the results. What symptoms are you having?