I have had stem cell treatment for LS, IT WORKS

Yes, you cant help digging me out can you, I have no other interest but to help those women I can. If you read on you will also find I have given the name of Nathan Newman in the USA TOO, AM I WORKING FOR HIM AS WELL?

I am the only person on this forum, 2 days or not, who has actually had stem cell treatment. I know it works, but for cynics like you, its not worth the effort. Because you cant afford treatment you begrudge and ridicule those who can. I assume you are in the USA, in the UK we have the National Health Service, and were this treatment adopted by them it would be FREE. I dont need to advocate Dr Casabona, he doesnt need it. You say you are happy with clobetasol, we call it Dermovate, and you wouldnt pay for stem cell, well sorry Guppy, I am not so easily pleased, I got up off my backside and found better help, what you do is entirely up to you. As for your doubting I am genuine, that is nasty beyond words. I really wish I wasnt genuine, but I have had this illness for over 20 years, and you, my dear, are a cynic beyond belief!

Oh, and by the way Guppy, have you ever cleaned toilets for a living, I have. I worked hard, and I am just letting women with LS know help is on the horizon. If you dont like it, complain, your good at that!

Easy, Guppy. We've had discussions of Dr. Casabona's treatments here before. He doesn't need any advocates. It's out of my financial reach, too and I'm separating from my partner with whom I had to stop making love. But if Loupielou inspires anyone or pops anyone's unrealistic balloon, that's what we're here for. We've had the odd self-promoter on here before, making empty promises of a cure. This is clearly a temporary fix that a few people can afford. And as Lou says, in time it may become part of regular medicine. The actual process is not costly, so the volume of patients is a Catch-22 for now.

I have just having finished listening to Dr. Goldsteins lecture, where he talked briefly about the work of Dr. Casabona, mentioning that his initial trial was too limited to form any realistic or robustly researched opinion,  and also highlighted the fact that his study  was not even placebo controlled, which is globally recognized 'best practice', and is used in research and development of any new drug or treatment by all the major pharmaceutical companies, and reputable accredited medical research institutions. 

Dr. Goldstein very clearly states that he believes it is far too early to go ahead with this kind of procedure, as not enough research had been done (see my key points in the first paragraph above) and he therefore thought it reckless, and irresponsible to openly recommend his course of treatment at such an early stage.

I do  think it is good news that research is moving forward to help woman with Lichen Schlerosus, however where I have a problem with Dr. Casabona  is that he is charging women such high sums of money for what is an untested and unaccredited treatment, whilst at the same time for basically using woman as Guineas pigs, how can this be right? Frankly one has to consider the very real possibility that he is charging such high amounts, because he himself may be aware that his treatment might not be as effective as he states it is, and so is potentially 'cashing in' as it were, by charging so much money, because he knows that this treatment may be found to be flawed in the medium to long term.

Furthermore whilst the treatment may prove to be a breakthrough eventually, there is no guarantee that this is an effective long term treatment for the condition. It is not FDA approved in the US and hasn't even been formally approved in his own country of Italy or the rest of Europe, which has to set alarm bells ringing in most people's minds. Nobody really knows whether or not this is in actual fact either an effective, or appropriate course of action, and subsequently therefore, could feasibly and logically in fact very easily be a course of treatment that causes more long term damage and harm than good. 

Incidentally Dr. Goldstein stated that he was in the process of undertaking his own detailed study, and is not charging anybody anything at this point......so who would you trust more at the moment?.....I think the answer is clear. 

I personally am of the view, that if women want to volunteer for treatment, then that is their decision and choice, I just think its wrong that he is charging such a significant amount of money for something that is in its infancy, and still evolving, and is also risky and questionable as it only lasts for approximately a year, so how does this provide a sustainable and long term treatment for the condition? I would also mention at this point, that we need to bear in mind that large reputable pharmaceutical companies, actually pay volunteers to help them with the research, testing, and development of new treatments, and clearly explain both the potential benefits and downsides of the treatment they are volunteering to undergo, whereas Dr. Casabona is actually charging very high fees, which is the complete opposite to the process that is undertaken by large globally respected pharmaceutical and medical research organisations......this must surely raise concerns?

As for your comments Morrell, the key issue here is not whether or not myself or any other sufferer can afford the treatment, it is the fact that this treatment has not been properly researched, tested, analysed or approved by any medical regulatory bodies globally, so rather than as you say Dr. Casabone does not need any advocates, I would challenge that statement, and actually say the reverse, and that he does need advocates, as his treatment is currently unproven, poorly researched, inappropriately tested, and not accredited by any reputable regulatory body, in any country in the world. 

Furthermore, I distinctly and clearly remember you quite openly and publicly advising sufferers against stem cell treatment, citing the fact that Dr. Goldstein is strongly opposed to it, and so I am not quite sure why you have now suddenly changed your mind regarding such an important matter, and especially bearing in mind, that you often suggest new members listen to Dr. Goldstein who is completely and  absolutely against Dr. Casbone's current treatment, so I would be very interested to understand why you have had a complete change of mind.

I appreciate and respect everyone's views on this important matter, and look forward to future constructive and helpful discussions relating to the very serious condition of Lichen Schlerosus.  

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Thats it in a nutshell, if no one has the treatment in its initial stages, then the treatment does not get to the masses but is abandoned. Saying that, there was a packed waiting room in Genoa, all waiting to have the same procedure, when I had mine done. It made me laugh when I was accused of being an advocate of Dr Casabona. This man has more work than enough. Casabona is a plastic surgeon. He works mostly with people who need surgery for medical reasons. He is the man who pioneered this procedure.

If you look up the vampire facelift, read about that, because its the same technique, more or less, but of course applied elsewhere. It explains exactly how the cells are implanted and regenerate. And no, I am not suggesting facelifts lol.

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Well said, well researched. Cosmetic surgeons have for some years now, both in the USA and UK, been carrying out stem cell treatments, called the vampire facelift, amongst other names. With cosmetic surgery, rules that govern medical procedures do not apply. For me the stem cell treatment worked. Any side effects or after effects, I wouldnt rule out. I cant, I am not a Doctor. The points you made regarding cost are right, 3000 euros is a lot of money, and many people cant afford it. I wouldnt be prepared to pay it every year. In the Uk, the governing authority for drugs and procedures is called NICE. I used tacrolimus, or Protopic, before it was passed by NICE, because I went to a private dermatologist in Harley Street, London. Now it is used everywhere. The National Health Service are in touch with Dr Casabona, and are now doing stem cell treatment at the Royal Free Hospital in Hamstead, London, so for me, that is hopefully the answer to my prayers if I am accepted, as it may well just be trial cases.

NICE would have to sanction that procedure, so may well have in the UK. Stem cell treatment is your own cells being injected back into your own body. I dont mind being a paying guinea pig, and I fully appreciate your concerns, which are valid.

Though I would like to add for Guppy and imoffoutofhere ...

The 'cancer industry' is also working with unproven material.  They 'try'.  The results starting to look unethical.  

Then my next question will be - what is the long term affect of repeated stem cell treatment?  Another unknown.  Time will tell and made available to all of us by those courageous people 'giving it a try' because there isn't much else.  

LS is left so far out, this far.  There are no solid and proven answers yet.  Together we can hope and pray that some researcher does a miraculous discovery.  Good thinking of you two, thanks. 

Well stated, Guppy. I think Imoffoutahere (I hope she's not, actually, outa here) has pointed out the reason we can even argue about this – the treatment is a form of cosmetic correction. All Dr. C. has done is apply a facelift technique to the vulva. I agree with Dr. G's view on it, but I disagree that Dr. C's clients are taking undue risks. If I lived near Dr. C and had bottomless funds, and I were younger (very disappointing that it doesn't the reverse fusing we older sufferers have) I might be in that waiting room.

One thing I do wonder, which I discovered while having regular acupuncture for my psoriasis – the needles initiate the Koebner effect, so even though the acupuncture points drained excess (traditional Chinese medicine's) 'heat' and relieved my symptoms (burning, itching and edema), a week later they were back with a vengeance.

Guppy, another thing: In dr. G's presentation he's soliciting qualified patients for his clinical trial. It was a really small number, I forget, like maybe twelve. As Hanny points out, cancer patients are often willing to risk sketchy treatments and what the heck, if some great discovery comes of one... Most of the critiques of this sort of thing are about false hope and exhorbitant charges.

I guess only time will tell if Dr C's treatment goes to the next level, I sincerely hope it does and that there are no long term ill effects.

Interesting point regarding needles!

I have been at the point to try 'anything.'  How many with me?  And then you come back to your senses and start 'to learn to live with it' to the best of your ability and you hope it won't get that much worse.  

However, we have to be careful not to 'shoot' those who try hard to find some kind of answer and perhaps a cure.  All through history people have come to find cures and solutions coming from various angles and thoughts.

Sadly thats the way our countries work, but maybe one day your private health insurance will acknowledge the need for treatment and allow it, live in hope. The actual procedure is not an expensive excercise, taking blood samples, separating the blood into its various components, adding a small amount of body fat that they lipo from your side, mix the two and inject it into the affected areas. The procedure needs to be categorised, it is not cosmetic surgery but crucial treatment and should be affordable. Live in hope and god bless xxx

The really sad part of this is that the actual procedure took 10 minutes. We go to the dentist to have a check up and it takes longer. With uninterupted treatment, as I say once a year, we would literally be able to resume sex lives and get on with normal living, I cant afford to have it done every year long term, but I think in time , as the treatment is recognised, it will be included as normal medical treatment. The waiting room where I went for treatment was full, there was no shortage of patients, but even so I did feel as if I were allowing myself to become a guinea pig for a new treatment, and I was more than willing to take that risk. I am glad I did. When you say LS is not life threatenning, well, there is a 5% chance of vulval cancer, but that aside, it is life changing, life wrecking, marriage breaking, and I am sure there are women who suffer depression over it. These are the parts of the illness we must make medical authorities aware of, to try to get changes in the system. One day please god, one day xxxx

One question I have loupielou - Did your skin during this glorious LS free year turn entirely back to normal?

 

The actual labial skin, yes, still is but going back now in a few little places. The perinium, yes, but going back now. The damage doesnt reverse. If you have hooded clitoris, it stays hooded. What changes is the skin becomes like it was pre LS, so in that respect the LS goes. The sooner the treatment, the less damage. The progress of the damage is halted, and the skin and flesh become normal again, so sex etc., in most cases can be resumed. All the splits and tears stop. The injections take a while to get going, as you would expect. After a month or two you notice the skin doesnt tear on contact, after 3 or 4 months the skin is as it was before, and it gets better gradually, then begins to decline gradually. Though I had this done 18 months ago, I am still nowhere near as bad as I was before the injections. Had I had another shot a month or two ago, the progress would have continued gradually. Basically, if you have a hood, or the minora has gone, thats permanent, though saying that, if a woman did have this treatment annually, a clitoral hood reversal might well be successful. This is how my treatment went, for younger women with less damage they would probably reap more advantage, have better results, though I cant complain. I was pleased and am tninking of going back if I cant get treated on the NHS here.

I mean clitoral hood surgery not naturally.

Thank you, Loupdilou, changed your name, imoffoutofhere.  Helpful to know.  I've reached a recovery of the clitoris through a diligent process with coconut oil and baking soda.  Great to have that sensation back.  But again, for how long.  Spotted some skin that I want my gyno to have a serious look at.  It might be nothing, but better safe than sorry.