Lichen Sclerosus nearly cured

Just a little more info for those reading Lynn's very correct post. The RDA is only 600 iu. Massive overdose can cause calcium build up in blood which can cause many side effects : poor appetite, nausea, vomiting, weakness, frequent urination and kidney problems may occur. Large doses should only be taken under doctors supervision when they can monitor your blood levels of calcium. Also vit d is dangerous when you also take thiazide type diuretics. The point is be careful. Vitamin d is necessary but often is included in your diet like in cereals. A balanced diet is really all we need for our health.

Hi Chrisy

How are you I havnt been on for a bit before tonight.... Been at the dentist today started my treatment for a bridge, and some other stuff, be glad when it's finished with, not to keen on the dentist!!!!

I take a multi vitamin which I think is 500 grams with zinc in it was my dentist that suggested this a couple if years ago, not sure really whether I still need to take this, do you take anything Chrisy to help with your skin... Sorry Chrisy how old are you, I'm sure you've told me before I'm 57

Take care Karen X

My doctor said 2000 mg a day. Thats the capsule vit D.

I am sure that under doctors advice this will be okay. Just reporting what is considered the RDA. of 600 iu and being informed is never a bad thing in my book. 

Hi Karen,  Nice to hear from you.  Good luck with the bridge, my husband had one and has never looked back.  I am 60 this year.  I don't take vitamins all the time only on occassions when there is a need.  I am far more interested in getting my diet right.  I have lost 2 stone up to now.  It has been a very slow journey but I am so glad that the weight is going down not up.  I spent years putting it all on so I am going to remove it slowly and hope that I can tone up at the same time.  I am exercising by walking my sisters dogs and will definately have to find something else to do when they return home in a few months.  Not sure what grams and iu difference is but I know that I feel loads better eating a healthy diet than I did when I relied on multi-vits.  I also find as I now eat a very regular and healthy diet I am not so hungry as I used to be. I try to never skip a meal and drink plenty. My skin condition has also improved.

If your dentist recommended this then I would not argue against it.  I found out though that as a diabetic I have to be careful when taking vitamins. Some do contain sugars which are not so good for me.

Hi Chrisy

Thankyou for that I will ask my dentist should I carry on with these vitamins maybe he meant just have them for a short time, I am back there in 2 weeks will let you know.

I do try and eat healthy but I havnt as much willpower as you.... You have done fab with your weight and exercise I must try harder, have you ever had hrt Chrisy only I felt my doctor didn't like the idea after the abnormal cervical cells. Xx

Hi Karen, yes I had hrt for 9 months after my hysterectomy as it was total and they removed my ovaries too. They recommended that I did that. I had terrible sweats with immediate menopause. That was also when my ls went into overdrive but I had it before the op.

I have always been useless are controlling my weight but becoming diabetic has made me think more about healthy eating. I went to Sworld diet club but I was bored at the meetings. The diet proved easy to follow. I have decided to just eat better and not indulge myself all the time.

I never said that the body's Vit D can be met by diet. I said MOST people can get enough D with a small amount of sunlight. Without sunlight the body can never absorb enough D for their daily needs unless they ate a ton of carrots perhaps.  Every day 😒

Of course if it rains every day for a week nobody has to rush out and buy D caps. It takes months of no sunlight to show effects from deficiency. Blood tests three monthly are useful when someone is required to take D to ascertain their levels. 

I take advice from my doctor and my specialist when it comes to putting anything into my body, even what my naturopath gives me I will run it past them if it's a bit out there. Sure there are many countries where they get six months darkness. It's common sense to know you are going to be deficient in D if you are a native to these countries. 

So yes, explore your options I agree and then decide with a trained health professional. 

Sorry, that was a bit terse in retrospect? My reply. The trouble is that when there appears a heading with the word "cured" in it many of us get very excited 😀 and then let down a bit when we read on.

Just last week we had someone here who claimed to be a doctor with a complete cure using stem cell Therapy.  Too good to be true sadly. A scammer most probably who soon disappeared along with her entire discussion helped out the door by the moderator and no doubt quite a few of  us. 

Hi Lynne. It appears as if quite a few ladies on this forum have been for stem cell treatment and there is quite a bit of information on this, as far as two years back. Perhaps we can get an update from them on how this has worked out for them? I have been in touch with the Dr who  mentioned the treatment last week. Definitely not a scammer, as this procedure has been done in S Africa for the past four years already and is mentioned on this forum in old threads. The Dr only came onto our site as she discovered that S Africans were going to Italy for the treatment and wanted to advise that it is done in their own country, so as to avoid all the unnecessary costs. She also mentioned in her discussion that there needs to be a follow-up every 3 to 4 years. She did not mention that it was a complete cure. I would really love to hear from ladies who have had this procedure done... if they have benefitted and also how it compares with the mona lisa touch. Take care everyone!

Yes, I have seen the stem cell posts in the past cuppaT, but never seen anyone claim it was a cure in such a dramatic way. Obviously I got it wrong and made assumptions for several reasons....

1.  Several poster who have been here far longer than me (6months) seemed to be amazed and overcome with the claim. Wouldn't they have already known about a cure if there was one.

2.  I have only been here six months but I have been on the internet many years on many discussion groups and blogs and the first thing you learn is that if someone makes an extravagant claim, they can't back it up with anything else but a phone number, and their grammar, punctuation and spelling is appalling then you have yourself a scammer. 

anyway sorry I offended anyone but I didn't see her discussion about follow up or anything like like, the whole thing disappeared! Why was it removed if it was legit?

She did say cure. How can a cure be partial? Like almost pregnant. Like dead, or not dead. 

Yes it's wonderful if people can be helped by treatment and if the treatment gives years of relief it's what we all want. Me too! 

 

Did your doctor tell you that you must take a fish oil or krill with the D? Mine told me that without it the body doesn't absorb the D.

No and have never read it or heard of it. Hard to believe all these years of taking it and hasn't done a thing. Ah well..... I trust my doc.

I know this thread is old, but hoping it might help someone who reads now...

I had embryonic stem cell therapy done in Los Cabos Mexico and it took my symptoms down by over 50%. So I’m pretty happy with that! I’m actually planning to go back in a month for round two. Not a cure for me, but a tremendous help, so I’ll take it.  I had also done autologous stem cells where they lipo your lower back and centrifuge, then inject. But in comparison I found the embryonic to be much stronger and more helpful. Part of the treatment in Mexico is chelation, which may have made a difference because I tested high in lead, mercury, and antimony. Who knows.

The other things I’ve found helpful are: drinking strongly brewed red clover tea every day, at least 2 cups. I brew it with a small handful of the loose tea and let it steep for over 20 minutes on a low boil for 3-4 min.

Olive oil: I apply this generously over vulva and labia & reapply after going to the bathroom. You have to wear a liner, so that’s kind of annoying. 

Hydrogen peroxide sprays.

Diet: I avoid gluten, dairy, corn, soy, eggs, and alcohol. Which basically leaves fruits and veggies and on occasion lean protein. 

Out of everything though, the stem cells were definitely the biggest help for me. Mona Lisa touch did not even come close. 

HI Renee,

Very interesting. goodness I hadn't had any ida that such surgery and stem cells wowza. But glad for you that i's working. 

I'd be really interested to know if you have an nutritional list of things that you are doing as well? 

I've been doing raspberry tea; thanks for letting us know about red clover tea - that is also a hormone balancer, right? 

Hi Nancy K B,

Nutritionally, I’ve done a TON of stuff. Probably too much to list. My LS came on with Lyme, although I was never bit by a tick. There’s a whole school of thought that Lyme could be viral, whether or not I believe that, I don’t know. There’s also the thought that LS could be viral, some sort of shingles virus is what I read. Who knows! 

All I know is that when I switched from treating with heavy antibiotics (I even did 10 days of IV clindamycin and gentamicin along w uterine antibiotic washes for 10 days!) to treating and eating for virus, that’s when I began to notice big improvements. Regular ozone treatments have been helpful, and I’ve been getting my vulva and labia directly injected with ozone, as well. It does help, but not like the stem cells do. Also, if there is somehow a viral connection, that’s why chelation for metals would be helpful. Virus feeds off of heavy metals as its food source, so if you remove the metals, you remove the food.

Anyways, back to nutrition- here’s what I take that has been helpful:

Liquid ionic Zinc 

I carry non liquid zinc sulfate  in my purse for when I’m out. Lots of zinc!

Lemon balm tincture 

Liquid b12 w methylcobalamin

Hawaiian spirulina- I take a handful a day.

Lobelia tincture 

A-FNG tincture 

Licorice tincture 

Red Korean pine needle oil capsules- I take around 6 of these a day. They’re STRONG, so be careful! Build your way up, or you might barf. I love these.

L Lysine and Vitamin C together 

Vit D

Co-Q10

High dose Vit C iv’s temporarily put my LS to sleep, but it’s expensive and not as effective as stem cells. 

In regards to the Red Clover tea, yes, it’s a hormone balancer. It also has anti viral and antibiotic qualities. Don’t drink if you’re pregnant or trying to get pregnant though!

I highly recommend buying in bulk- the tea bags are weak sauce.

If you google “organic red clover blossom whole”, you’ll see a good source. One small handful brewed super strong is magical for me! I add stevia and cinnamon so it tastes better. 

thanks so much for typing this up, Renee!  I'm particularly interested about the L-Lysine. I"ve known about it for years and usually have a hidden bottle somewhere in case of getting a canker sore.  WOW, but this made me go look up more about your intuition that LS really has virus involvement..... a la chicken pox turning into Shingles 50 years later. 

WOW I even found a company that advertizes L-Lysine for shingles.  and it helps with leaky gut! and there is evidence that it helps with cancer!! 

SO intriguingly I've recently been discussing with myself that since cancer is an autoimmune disease, and why not check into the nutritional deficiencies KNOWN for aiding cancer?   

HA! I'm going to add this one to my 72 year old regime and just see if I make it wonderfully to 95 all well... this has been a really instructive 3 months! smiles

I wish I could take all the credit Nancy, but I owe all of this knowledge to Anthony Williams, aka “Medical Medium”. Have you heard of him? If not, try Googling him and even listen to his podcast on Lichen Sclerosus. He says it’s a type of shingles virus which is fed by high levels of lead. I actually tested positive for very high levels of lead, among other metals!

He also says that Lyme is viral.  It blew my mind at first, but it also completely makes sense to me and feels intuitively very right on.

All I know is that when I started following his diet and supplement plan for virus, my life totally turned around for the better and I’ve been able to keep the LS under control more. 

Also, what I learned about embryonic stem cells (and all stem cells, for that matter) is that they kill virus. So this is why I think the stem cells helped me so much. It’s actually clearing the disease by killing the virus that causes it. 

Another extremely interesting and super important thing that I fully believe is that the body does not attack itself! So this “autoimmune” component of LS I believe is total horse-rubbish. The body is trying to attack the virus, not itself. By eating certain foods and taking certain supplements, we can aid ourselves to heal. 

Other good anti virals: 

Red marine algae!

Cat’s claw 

I basically buy all of the tinctures that Anthony Williams recommends on his supplements page for fighting virus and mix it all up in water. Makes it pretty easy. : )

Have you ever tried pharmaceutical drugs for this virus, such acyclovir or famvir? I happen to think the connection between LS and this virus could be very well related. Hormonal changes,Hashimotos, stress, bad diet, alcohol,can all trigger the immune system to to get crazy, thus opening the door to this virus. They say most people have this virus lurking in their system anyway. The blood can be tested for all of the Herpes virus's.I never had chicken pox, though, but my blood work tells me it is definitely there. Thx for sharing.

Oh Renee! totally amazing. I instantly went out and bought L-Lysine yesterday to add to my list that I've built up - Grin- I don't know if you've seen my whole long analysis of following my nose down the rabbit hole of this thing. 

Aha... smiles. but I slightly disagree with you about the  LS not being autoimmune? I've found a study proving it etc. BUT I totally agree with you on the TERM "AUTOimmune" as if so many people just decide to attack themselves with cancer, multiple sclerosus, LS etc (there are 160! types). 

LET"S change the term instead... but the researchers are finding pieces of the puzzle and just haven't come to the last domino yet.... It totally makes sense as you say/Anthony Williams says, that our bodies are trying to rid themselves of something - a VIRUS.  So it's not that we are atacing ourselves but that our immune systems are under attack. okay. 

dang funny I had just surmised there was something about shingles and this LS... wow.. ANyway, you've given me so much fodder to keep me going. I'll listen through his piece - it's an hour. and go find a website for the lit you mention. 

will get back with more... I think you might want to add the cofactors for Vit D to your own regimen, One of which is BORON whcih I've learned can detox heavy metals!

Where the heck did we get too much LEAD in our lives from? 

P.s. My daughter now 33 was a very high level clairaudient/clairvoyant psychic for 20 years before college she would talk with any spirit being anywhere. but she didn't have that medical part or interest and never found a purpose for maintaining a connection that she couldn't "prove". I loved when she'd commune with the dophins in the seas around the planet and could even ay what was happening with the magma at the bottom of hte seas etc... and then I'd read some science article later about whatever...  

I actually *just* started Acyclovir yesterday! So it’s too soon to be able to tell. Have you ever tried anything like that?

Very interesting that you never had chicken pox, but tested positive for the virus.  When I was at the stem cell clinic, she tested me with some sort of biofeedback machine that said it was a pox virus.... I wasn’t sure whether or not that was true, but now I definitely wonder.

This virus is passed so easily from one person to another that someone may never know that they carry it. Many people have it on.their lips, and you wouldn't necessarily see it if it is before or after a breakout, but it can be transferred through " viral shedding", with no apparent lesions. The same is true during intercourse or even oral sex. It doesn't mean that if you come in to contact with this you would see a lesion. It could just make it's home in your body and not surface.Yes, I tried the acyclovir. It is hard on my stomach so I didn't pursue it. Take with food. Worth a try, a very effective drug. I used to work , as a former nurse in.ob/gyn. It keeps the virus dormant, which is good. Some people r on a maintenance dose, taking it all the time. How r u to take it?

Yes when this first came on it was tingly and I thought maybe it was herpes. I got tested 3 times for HSV 1 & 2, and it was negative every time, so it’s definitely something else. I just asked my “Lyme” Dr for  more in-depth viral testing.....

He prescribed the Acyclovir 800mg 3x a day, which seems like a hefty dose to me, so thank you for your advice on taking it with food! I don’t love the thought of taking a prescription drug, but I’m open to experimenting for a little while to see if it helps.

Did they just culture the area, or check your blood? It shows up in the blood even if a culture or swab is negative.Yes that 800 mg is a very hefty dose. GOOGLE IT.

Anyone had treatment for abnormal cells after a cervical smear! Hpv causes the abnormal cells and I think there's a link with this virus to everything else 

I had 3 separate blood tests, all negative for HSV 1 & 2. EBV was positive for prior infection, although from what I understand, that doesn’t necessarily mean much..  I tested positive for 3 bands of Lyme. Band 41, 23, and 39. It’s my understanding there can be a viral overlap that triggers Lyme tests. 

When my symptoms first came on it felt tingly and then like bugs were running all over my crotch area. Then it felt like screws were being driven deep into my labia where the inner and outer labia meet. I’ve had two biopsies and waiting for the results from the second one still. I’ve had only one white patch. There are these plug type of things beneath the skin that feel like hard, sharp shards of glass beneath the skin. It’s bumpy under the skin that hurt and itches.

The itchiness was driving me insane, but greatly improved by about half after I did the embryonic stem cells. I’m basically assuming it’s LS because of the white patch and itchiness, but I don’t have a definitive diagnosis. Perhaps it’s something else! It’s not bacterial, as I did 3 months of oral ABX in case of Lyme, as well as 10 days of IV Clindamycin & Gentamicin therapy. 

I’m all ears if anyone has any input!

I got tested for HPV & it was negative. I’m sure there are different viral triggers, however! Thank you ladies for taking the time to chat with me. 

EBV is in the same family as Herpes. Have you been to a vulgar specialist?

Have you ever had abnormal cells Renee after a smear! Or had any treatment in the past 

Oh my goodness, I have been to SO many Dr’s and all have been pretty useless. I went to 6 different OBGYN appts, and no help. They just told me to take gabapentin. I flew to see Dr Fowler in AZ and all I found out was that I have low lactobacillus. Zero signs of any bacteria- everything comes back negative! I should get biopsy #2 results back tomorrow and if that’s not helpful then I guess I will need to make another appt w a different vulvar specialist. The first one I saw was running behind and very dismissive, saying I “looked fine”. So frustrating!! That’s why I’ve turned to stem cells and ozone, I can’t seem to find any other help. 

No, no abnormal cells. Maybe it is some random Lyme thing causing this. Does it sound like LS to you ladies, or no? Has anyone else had the “plugs” or sharp “shards of glass” under skin? The one white spot went away after I covered labia and vulva with olive oil for 5 days.

Hi Renee, Can you elaborate on ozone? Not heard about that treatment.

Okay, I just got biopsy #2 results in and it’s definitely lichen sclerosus. I’m super relieved at least to know for a fact what this is. In my heart, I knew it would be because of the itching and white patch. Also, my Lyme diagnosis goes hand in hand with this. 

That’s really cool that your daughter has that ability! What a neat gift. Does she still have and use this ability? 

I definitely take Vit D regularly but I did not know about Boron, so I will add that into the mix, for sure. 

I wonder how many ladies with LS have Lyme, also.... things that make you go hmmmm!

And yes, I hear you and agree w the autoimmune thing. We’re saying the same thing- just that the body isn’t trying to attack itself, it’s trying to attack the offending invader. : )

Glad your relieved , Renee! Hope the biopsy site heals well. I have never had one. I agree with those who believe that the body is attacking the invader. That is true of many skin diseases, I think.

Cynthia, I got off the acyclovir because you were right- way too hard on stomach. But I then got on LDN. I’ve taken this before for eye damage, so I was able to ramp up very quickly. Oh my- this is WORKING. LS symptoms are almost gone! I’m up to 2 4.5 mg pills a day. The desired dose for LS is apparently 12mg taken at bedtime. It can mess with your sleep a little, but if titered up slowly, you shouldn’t feel it. I am finding that if I just take two during the day, that’s fine. I think I have hit the jackpot here. Read up on low dose naltrexone if you haven’t already!!

Hi Renee, I have found some doctors, functional, that I am told would order the LDN, to be compounded. I am in the dark as to why this helps. At first I thought just for the pain, but u r saying as others have said, it eliminates symptoms other than pain. Is it safe? What is your take on how it works. Interesting that u mention.eye problems because I have had eye issues for years, infection, pain, constant irritation. May I ask if u think if you think your eye problem is a part of this whole picture. As for acyclovir, when I was younger I could tolerate it, but now with IBS, Not so much! Can you elaborate on what symptoms r for LS r clearing up. Thx. so much.

Hi ladies 

I too have eye problems!! Constant watering, and nerve pain like sciatica! I think it's all connected 

OH Renee! with all my 3 months of researching LS I hadn't come across this one yet! WOW. THANKS so much. I instantly went looking and found that Dr. Amy Myers' MD has a whole page on the possible uses of Low-Dose Naltrexone (LDN). very encouraging to give it a try, as she says that it has no side effects, so if it doesn't work for a particular person it's still a safe consideration - so much so that she uses it routinely in her 30-day protocol along with other healing supplements. 

I have nerve damage in eyes that is due to an ultrasound “beauty” treatment. But it seems that my issues arose after this. Whether or not the actual ultrasound machine kicked my immune system into overdrive, or just the actual stress related to the injury, I don’t know..... but the LDN appears to be helping with lowering itching, big time. It was helped by the direct ozone injections and I feel the LDN is taking it to a higher level. If it’s viral, perhaps the LDN controls the virus? It is supposed to help the immune system in low doses. 

Hi Karen, Yes, my eye pain was so bad at one point that I went to Miami to Bascom Palmer at the University . They made a special compounded tetracycline eye drop which helped with inflammation..No one really ever knew the ca use but it went on for 3 years. Better now but always a vulnerable area, and constantly guarding my eyes. Also diagnosed with glaucoma and treated with laser last year. Weird eye problems on going, but at least no pain now . Maybe it is related to LS. So many unanswered questions.

Hi Cynthia 

Yes I think it's all related this nerve pain! How old are you! Did the laser help! I know what you mean definitely weird! 

Hi Karen , I am now 68.The eyes problems started in my 40's. The laser was for the glaucoma. I was so nervous, afraid it would trigger the pain again, but I have such a great ophthalmologist, very reassuring.It was easy and painless. I will need it every 5 years. Eventually, cataracts will need to be removed, maybe it will go as well. I might add it is always irritating to wear eye make up . Do you wear it and if so what works for you? I am a professional and need to look well when I am with clients.

I'm sorry to hear you've had this eye problem for so long Cynthia, it is a really delicate area and a worry not knowing what to expect with the procedure, I do know ladies that have had laser treatment and cataracts and all of them have said it's painless so yes it is very reassuring. To be honest I don't really wear eye make up but I do like a few of the individual lashes added into my own, so I go for this, so much easier and no need for mascara! Which is a nightmare removing! You should give it a go. 

Cynthia have you ever had abnormal cells or treatment after a cervical smear in the past! 

renee, I know you posted this nearly a year ago but do you mean the toxic algae in Red Tide?

Have you returned for any additional stem cell therapy? I assume this was not covered by insurance.

No, I was referring to a supplement called red marine algae.... I'm going back to get more eboo ozone as well as high dose vit c IV's. I also have an appt soon w a specialist to test for red yeast and candida glabrata. Apparently most Dr's dont know how to test for this stuff, so I will keep you posted!

my gf had severe cervical dysplasia (very likely from an unresolved case of HPV). all western medicine specialists told her she needs surgery and cervix removal and has no other choice. she wouldnt accept this response and found Dr. Nicholas LeRoy in illinois. he cured, yes cured, her cervical dysplasia and she now has a fully healthy cervix. he gave her a specific diet, herbs, and internal vaginal flushes.