Dr Goldstein Lecture

ooh ooh....that stung hanny!

don't think kellie was expecting her labia back ...but a halting of further degeneration....whilst simultaneously healing with body promoting methods....why not?

no need to give up the clob until one's body turns the healing corner....when confidence will allow! 

Reality check is right, Hanny. It's a misunderstanding to think that clobetsol is temporary itch reduction. It's deep inflammation (damage) prevention, meant for long-term use. To lash out at the overburdened medical profession by refusing treatment is what my mother used to call 'cutting off your nose to spite your face'.

As Dr. Goldstein said very clearly at the beginning of his presentation, potent steroids are not ideal, but until research finds a way to target the few proteins responsible instead of the whole array, it's all we have. And the research isn't happening, because so few women are affected. What we can do to remedy this situation is to become more vocal.

Thanks Morrell, it was a tough pill to swallow when I learned that the glob meds were limited.  One can have hopes, I again do, that better solutions will come.  But not until then, I appreciate to know where the knowledge with this is at.  

What I remember of the Goldstein lecture, he does claim to have almost 100% success with his method (just one failure of a woman who was out of contact with him for several years), right?  So I am confused about whether we are expecting too much with his approach or not. 

Suzanne, he says of 1200 patients only one has gotten squamous cell carcinoma, the woman who left for three years and didn't do the treatment, then came back. Statistically, he should have 48 women with cancer. He attributes this 'success' to the regime of pre-soaks and long rubbing-in of the Dermovate and using ointment, not cream. And never quitting it!

My personal expectation is that I won't have extreme flares with a lot more scarring and I won't get cancer. But as he says, there is a very wide range of how bad LS can be and how fast it progresses. That's why it's risky to say to anyone here that they can hold off on the steroid cream and try to fix her auto-immune system from the inside. That sounds good on paper, but when I had the flare that took me to emergency, it happened fast. If I'd been diagnosed and prescribed the cream, it never would have gone the way it did.

Did anyone of you think of becoming one of Dr Goldstein's test patients?  I read what the requirements were and know that I am out.  I have a lowered immunity.  Then I read what the intentions were.  Similar to what a doctor in Italy is doing.  Stem cell.  I wasn't so sure in case I would have been accepted whether I actually would have wanted to become one of the patients for his research.  

And yes Morrell, I'm also all the time amazed at the speed this LS shows itself in an ugly way.  

Dr. Goldstein actually disapproves of the Italian enterprise, because they're using two methods at once, so it's more like an enterprise than a study. How would you know which thing was doing the healing? I read through the study participant criteria and you have to live near his office in Washington DC. I have psoriasis, so I'd be out. Unless I'm misremembering, I think he's only taking about ten patients.

Right.  I forgot that he was referring to cancer.  However, I thought that he also claimed that his method stopped the LS.  I am not criticizing, but clarifying.  I liked his lecture very much and have found it extremely helpful.

Regarding it being risky to say to people with LS that they can hold off on the steroid and try to fix it on the inside, I personally agree and immediately took steps to get the steroid.  I have no interest in welcoming the permanent physical changes (fusing and atrophy) that is so common with LS. But I do find this "conventional versus alternative medicine" struggle a bit tiresome.  There is no doubt that we need both immediate treatment and to slow the underlying causes, if possible (such as you found with the dietary change of removing sugar).  This is not an either/or debate, though people are free to choose either/or.  Why can't we send this inclusive message?  Further, while providing background and research on the underlying causes of LS and other autoimmune disorders may be a bit dense for some, even confusing, there needs to be a place on the forum to explore these larger issues.  There is a lot of research out there that is not "woo-woo" but is, in fact, scientific. It is not even considered "alternative health care" but is a broader and deeper look at our symptoms.  It would be a terrrible shame to overlook this because it's a little hard for people to understand.

Suzanne, Dr. Goldstein said that although it used to be said that corrective surgery for LS was not of much value because it always scarred over again, he's now confident that with diligent application of the Dermovate ointment with his instructions, surgery patients can avoid further scarring and atrophy. But he also indicated that the disease has several versions, some of which are quite extreme and harder to stop.

I respect the depth of your understanding of cutting edge autoimmune research. I agree that a thread dedicated to exploring this is appropriate here. It's hard for people – including me – to sort out the info from solid sources such as you seem to be reading and the torrent of commercial alternative sites that sell supplements and expensive multimedia programs put on by charismatic presenters.

I've been reading a book about the trend of people taking their health into their own hands, I'm trying to see the big picture. Until I was diagnosed with LS I was prone to rant about Big Pharma, the Medical 'Establishment', the 'cancer industry', etc.

If you could post some clear points about things that have been confirmed as worth trying, that would be so helpful. Discussions between the few who spend the many hours it takes to find out this stuff are pretty opaque to the rest of us. There is a huge range of how much change most of us are willing and able to undergo in order to slightly alter our disease's progress. Perfectly sensible things have taken me many months to be ready to bother with. Maybe my LS just isn't bad enough or is beyond repair, so I identify with those who would like to enjoy life (even life after sex) without obsessing about our undercarriages. This is what disposes me to get those bullet points out there to maximise the effectiveness of what treatment there is, so we can get on with life.

Morrell--Good and clarifying points. Agreed that it is hard to separate out the facts from the fringe.  I also agree that our degree of motivation for change is likely related to how much our health problems are interfering with our lives. I have a Ph.D, an interest in health and research issues, AND I have been brought to my knees with my health problems--all have motivated me to explore underlying causes rather than only chase symptoms.  My rheumatologist, who found a number of serious autoimmune markers that haven't yet manifested, suggested putting me on powerful drugs that have as many risks and side effects as the diseases that will develop.  I am plenty motivated to stop the progression of additional autoimmune disorders, having several already (celiac, thyroid, LS, and a number of others apparent in past blood work that have now gone away--yay!).  Like you have mentioned, I spent a lot of years in complacency.  I ate what I wanted to eat and overall treated my body like it was a robot that I needed to perform to my will.  Partly that was understandable because no one had diagnosed my celiac disease.  I was sick all of the time, but I also had goals and wanted to live a normal life--so I just pushed myself endlessly.  Now I understand more of what creates health and how my doctors missed diagnosing and understanding problems that made my life miserable for many, many years.  While I respect what physicians do know, I also know that I can't rely on them to be as motivated to figure out how to get me healthy as I am.  And while I wouldn't want to go anywhere but an emergency room in a crisis such as a heart attack or broken bone, they are just beginning to figure out the causes of chronic disease.  They simply do not yet know a lot yet about these problems, though there are researchers who are looking at this. And yes, there are political and financial interests that bias the information that we get, so a lot of work needs to be done to sort through what is genuine information, research, and contribution.  I would be happy to post more at some points about what I have learned.  Most of it ends of being common sense though, such as eating whole, mostly nonprocessed foods and living life with respect for our body's needs. It's why these behaviors are important that fascinates me.  I might not have been motivated to change to a healthier diet, for example, if I didn't have all of these problems and if I didn't begin to understand the UNDERLYING CAUSES to the sage old advice to eat our veggies!     

Sorry but I haven't been on for a while so have no idea what the negativity is towards me. I'm sure clob works for lots of people and from what I have heard halts further progression, but I haven't been seen by a specialist and won't be seen until October so I have no clob until then. Until then I don't plan on sitting on my backside and not looking into other ways to help myself, what you choose to do is up to you and of no concern to me. But I will say one thing my research and self healing has made a difference and I have been pretty much symptom free with return of a lot of colour so until October I will keep on doing what I am doing. That is my reality check.

Sorry Kelly, that what I wrote upset you.  It was not at all sent in your direction.  It was MY reality check and probably poorly expressed in an depressed moment.  You will no doubt have your own reality check.

As Dr. Goldstein wrote/talked about - at this present time there doesn't seem to be anything else then the glob to keep this disease at bay.  No other forms of treatment have proven to be a cure, according to his writing.  But at least he will start to do more research.  That should give some hope.  

I found it very shocking to come to the realization that there doesn't seem to be a cure for those LS patients where the disease is very far advanced.    

Kellie, I for one am very grateful that you brought this lecture to our attention. I'm impressed that you dug so deep before seeing a specialist and that you've managed to figure out what works for your LS on your own. Although I have no intention of stopping the clob, I do suspect a number of positive things I've done on my own are at least half responsible for my good condition.

Suzanne, thanks for clarifying your angle. I've been eating very healthy for many years and my skin is the only manifestation of autoimmune disorders. You're in an excellent position to get as close to the bottom of this mystery as anyone here. I look forward to updates.

Sorry I took offence. You are obviously more advanced in this decease than me I totally understand your anger. I think the only reason there is no other treatment than clob is because LS hasn't been researched enough as it costs to much money. All deceases are caused by inbalances in our bodies I think it is our responsibility to find what those are ourselves be it hormonal inbalances or mineral. Maybe it isn't something we all share but it is something we all have in common. I do a lot of research and have found I probably have lots of mineral inbalances which I am trying to correct. We didn't all just wake up one day with LS this crap has been caused by something we are short of or something we have to much of, we can't wait around for doctors etc to find that for us.

 

You are very welcome Morrell, I will use the clob too once I see the specialist but will continue to find anything I can to fix this as I believe it can be fixed ( at least stopped ). 

That's the perspective that makes good sense to me too, Kellie!  --Suzanne