Bless your heart. I can see the suffering that you are undergoing and the word "suffering" seems to be too mild a description in your case.
First of all, I want you to know that you are not bothering us with your posts.
But most importantly. I would ask you, please do not give up. There is an answer somewhere, somehow, we just have got to find it. I know how very hard this is for you and on a different level I know exactly how you feel. Your words echo exactly how I felt some years ago with regard to a certain condition that I suffered from that I perceived to be incurable. It was not a skin condition, but extremely debilitating in its own right. I was literally unable to function in this world of ours. Your words ring loud and clear because I know what it is to walk through the "depths of hell." My healing journey also took ten years out of my life.
I am telling you this because where I once thought there was no hope, there was indeed hope, there was indeed healing. Yet, at the time I could not see it and was rendered helpless. Keep looking. Somewhere, there is an answer. Somewhere there is a solution. Giving up will make it impossible to find it. And as I write these words, I want you to understand that I am completely familiar with literally losing all hope while sitting in the dungeon of hell. So please take me seriously and hang in there.
As it happens, I posted this the other day. Hopefully, it will help and shed some light on your condition. Maybe it will give you some type a clue, some bell will ring.
http://www.curezone.com/forums/fm.asp?i=1517051#i
Also, do you have a holistic or naturopathic doctor that can help you with this. We can give suggestions over the internet, but sometimes "hands on" attention is needed. Even while looking for a doctor, if you don't get good results the first time, or even a few times after that, please do not render the condition incurable. I went through tons of doctors before anyone even had a clue as to what to do. And you know, that one doctor happened to materialize through a long set of circumstances that had nothing to do with me when I had indeed finally given up. It was almost like divine intervention, but it is a very long story, so I won't go into it.
My point in all this is I see how you are suffering, I see your plea for help and I see the helplessness and loss of hope. I implore you not to lose that hope and not to give up in your healing journey. Tony will be by with possibly more suggestions, but I do suggest that you also see a health practitioner that can treat you personally.
And please....... you are in no way bothering us. Feel free to post. We are here for you and how I wish I could just reach out and help you now. Make everything okay. I feel helpless right now too. But.......... There is an answer out there. Please do not give up.
My very best,
Luella
Thanks Luella.
Yes, 10 years and a total of 28 doctors so far. Most of them have been alternative/naturopathic or integrative physicians.
Most have given up on me after seeing absolutely no change after months and months of treatment. They would usually say that I needed to be referred to someone else (ie, they couldn't help me). Some came right out and told me that this is a genetic condition and will never go away.
I have focused on the gut-skin relationship for most of my healing journey. I have taken just about every nutrient for candida, intestinal wall repair, leaky gut syndrome, and quite nearly every strain of beneficial bacteria on the market.
I spent a long time with a very famous integrative doctor in NY who specializes in intestinal problems. After what seemed like endless diet modifications and boxes and boxes and boxes full of supplements, he came to the conclusion that he had no idea what was going on with me.
I've never used vitamin D3 directly on my skin. I have taken vitamin D for years as well as receiving adequate sunlight seasonally.
I almost broke down in tears today because the physical pain, frustration, and utter despair are more than I can deal with.
Even we were able to figure this disease out, I don't have much to look forward to. My face is absolutely disfigured now from years and years of constant severe infection. It is one thing to have the possibility of recovering from an illness and then reintegrating back into life. The irreparable scarring will prevent this from happening with me. And the worst part is that I sustain new disfiguring scars weekly.
I think, "if only I could stop the infection..." but I can't. I've used every single antibiotic herb. I used every antibacterial/antimicrobial/antifungal nutraceutical that I've come in contact with for the last 10 years. I have researched at least 2 hours a day for years. I have thousands of pages of notes and I have used almost every treatment that I have researched. Nothing.
This is probably the wrong place for me. I don't expect any one from the online community to be able to identify this problem or know the answer for it. If 28 alternative doctors have no clue, then the nutritional hobbyists that are on curezone probably cannot realistically offer me any hope. I just think, maybe, just maybe someone will mention something.
I'm not sure why I post. I think it is because I need a place to just tell people what is happening to me. To have this happen to me and not tell anyone about it- to not relate what I am going through- might make it worse.
The more that I think about it, it seems that the only answer would be to free myself from what is feeling the pain. All of my psychological pain and physical pain is stemming from what is happening to my body. Since I can't heal my body, I basically need to leave it.
I'm not sure of consciousness continues after death, but it really doesn't matter to me. This body is causing unbelievable pain and suffering it seems that the only way to end the suffering is to leave the body. Is there anything "outside" of the body? No one can know. It certainly couldn't be any worse.
Some may see this as cowardice but they will never know the depths of my pain. I was never planning on giving up. I always dreamed that there MUST be some answer, some reason for this issue...but I don't believe that anymore. I have tried and tried and tried to heal myself. Like I said, 28 health practioners, every diet modification, thousands of supplements, "miracle" herbs, "miracle" liquid vitamins, etc, etc...
It's clear to me that I am not going to be healed. Some may say that with this attitude, then I am certain not to be healed, but I think that is rubbish. If were going to happen, it would have by now. If anything showed me even the tiniest bit of improvement then I would be encouraged but that has never happened.
I know deep down in my heart that I will never be healed. Some people just know this, and I am one of them. I don't know why I know this but I do. I know my body and I have suffered with this for so long. Nobody knows this situation like myself and I have come to the knowledge that this is a permanent condition. The one and only question now is whether or not I am going to live with this or not.
I understand your frustration, and I know that "frustration" is a very mild description for what you are going through. Yet, I implore you not to lose the will to live. Again, I know what this is like. Sometimes life's circumstances can get to the point where you see no way out, causing one to give up and lose their very will to live.
I emphasize that somewhere there is a "root cause" to your condition. It looks like you have exhausted all physical options. Have you considered that there may be an "emotional" root behind all this? Not the emotional grief that you are undergoing now, but past buried hurts. When did this condition begin? What was going on in your life then? Any type of grief? Any anger, unforgiveness in your life? Any childhood traumas?
I also want to emphasize that outward appearance means nothing. It's all about what a person is, their being, their very soul. Anyone who bases a relationship on face value, no matter who you are, doesn't deserve the time of day to begin with. I know that this is hard because we all place emphasis in our outward appearance and this is promoted by the mass media. There are many who suffer from handicaps, and this may not be the right word, that lead a fulfilled life. It's all about valuing one's self no matter what the circumstances, and I know, this can be so very hard to do. It's a whole spiritual path that entails learning and growth. I still implore you not to give up.
As I write these words, believe me, I feel your suffering.
Have you considered some type of therapy where you can talk about your feelings with someone and receive guidance? Maybe joining some type of support group?
I realize that with the amount of suffering that you are enduring, these words may not make a dent. Yet, I am hoping that something will spark pointing you to an answer. There is one out there somewhere. I know what it is like to truly lose all hope and I know what it is like to give up, having endured pain for what seems to be an interminable amount of time and not seeing any type of silver lining while trying to peer through the keyhole to the future. I know what it's like to simply want to shut the door. Yet, once we do that, we will never find the answer.
Please do not give up hope. I still say, there is an answer to everything.
Luella
I am so very sorry that nothing has helped you.
The eternal optimist in me wants to say that there is little nature cannot cure and that most difficult conditions which resist help, other than those which have been caused by irreversible injury, exposure to toxins that cannot be repaired, or genetic aberrations, just have not yet hit upon the right combination. However, if our roles were reversed I can certainly understand how you feel the way you do.
Yes, there are many rackets out there among the supplement suppliers - but that does not make it nothing but one big racket, because there are a number of reputable companies whose products have helped a great many people with a great many different conditions. If such were not the case, I would not be here. In particular, I have to differ with you when it comes to intraMAX. Of all the many fine products I have come across during the years, I would pick that as the top one. My opinion is shared by some of the most respected members of this site who use the product personally - and a couple of those people are not particularly fans of supplementation to begin with. But they report that they can tell a noticeable difference when they take intraMAX and a noticeable difference when they stop. I have had others outside this forum report the same thing.
That leads me to believe that your condition is not likely caused by any nutritional deficiency, at least not at present. All I can say is that if it were me and I had a condition where nothing and no one had been able to help me, I would go back to the very basics and do nothing but cleanses, detoxes, and fasts and consume nothing more than raw organic goats milk at first, and then add in a raw organic free range egg and a bit of molasses, and then a good all around nutritional supplement and stick with that for a prolonged period. If there were any improvements, then I might add a few items into the diet and supplementation one at a time, such as digestive enzymes and probiotics, withdrawing in the event of any setback.
I so very much wish I could tell you the magic formula to finally help you, but that is the very best I can do and I regret that it may be inadequate. Like the others who care for you and want to help, I am simply giving you the best suggestions I know of based on my limited knowledge and experience.
Guessing over the internet is an iffy thing no matter what the knowledge of the advice giver may be, and even though you report having seen no fewer than 28 doctors over the past year who have had no better luck in person, that would normally still be the best route to go in my opinion.
Your persistance has been remarkable and I hope and pray that you continue and that you do find success.
All the very best,
Tony
Yes, Chris, I think we are both on the same page pretty much on this one. I would fast, cleanse and detox and then go back to the very basics.
Speaking of the human detox process, I though you might find this interesting regarding the two phase process and how two different forms of niacin can affect each part:
"Simply speaking, the body's natural liver detoxification process involves two steps; Phase 1 and Phase 2. A toxin initially enters Phase 1, the P-450 cytochrome system, and is reduced to smaller fragments. These fragments then progress to Phase 2, where they are bound to molecules such as glutathione, glycine and sulfate. This process creates a new non-toxic molecule that can be excreted in the bile, urine or stool.
In effect, Phase 1 either directly neutralizes a toxin, or modifies the toxic chemical to form activated intermediates which are then neutralized by one of more of the several Phase 2 enzyme systems. In Phase 1, a toxic chemical is converted into a less harmful chemical. This is achieved by various chemical reactions (such as oxidation, reduction and hydrolysis), and during this process free radicals are produced which, if excessive, can damage the liver cells. Antioxidants reduce the damage caused by these free radicals. If antioxidants are lacking and toxin exposure is high, toxic chemicals become far more dangerous. Some may be converted from relatively harmless substances into potentially carcinogenic substances.
One or both detoxification phases can be inefficient or overloaded. A particularly damaging combination in an ill person is an excessive overload of toxins coming into Phase 1, with an inefficient Phase 2. In some cases this combination is believed to be the cause of marked environmental sensitivities, drug intolerances and interactions that characterize many chronic fatigue and fibromyalgia patients."
http://www.diagnose-me.com/treat/T355489.html
Niacinamide slows down phase 1, while niacin speeds up phase 2. Niacin is also known as inositol hexanicotinate, vitamin B3 and nicotinic acid.
The relevance to this thread, besides the harm that may be caused from an overload of toxins and the creation of free radicals and carcinogens and such, is that when a body's primary detox system is not functioning well in one or both phases, then toxins may bypass the normal detox outlets of first of all the liver and bile duct and secondly the kidneys, and then seek elimination through the body's third method of toxin elimination, which is the skin.
All the best,
Tony
As one choir member to another, I did not know that information myself until quite recently. One of my oleandersoup forum members on Yahoo told me that she was taking products that included both of the above mentioned forms of niacin and she wondered if that was safe - and I had to do a little research to find the answer. What I learned was that it appeared to be not only safe in most instance, but perhaps beneficial. It is by means of such question and the necessity of doing my homework that I become a bit wiser as time goes by and hopefully remember more than I forget - learning being a never ending process.
Speaking of forgetting and such (and I note your repartee here with Sara), as an interesting aside, there was a study last year at I believe Caltech Berkley, where they used high doses of niacinamide with 100% success in reversing the rodent equivalent of Alzheimer's. Naturally, the researchers cautioned against anyone trying to do the same thing with humans and of the dangers of taking supplements - despite the fact that niacin and niacinamide have a virtual 100% safety record. I believe that the proper interpretation was to not take any such supplements until they can produce a patentable version to market.
All the best,
Tony
You make a very good point. On the other hand, consider that people in their 50's, 60's and 70's generally grew up in a less toxic environment with better nutrition and thus perhaps laid a better foundation for health in their later years despite the toxins and bad habits that may have ensued on down the line.
By the same token, animals in the wild generally incur much less incidence of degenerative diseases of the types found by animals in captivity living in urban environments and eating leftover human foods and processed filler filled animal foods.
Cleansing and proper nutrition may not provide the ultimate answer, but it surely is going to be beneficial and is unlikely to cause any harm or exacerbation of your condition.
I hope you read my post linking to Dr. Christopher.
All the best,
Tony
What is your point here? Are you suggesting that alcoholic, reckless smokers are living a healthy lifestyle or that Coca Cola and fast foods are not detrimental to health? Are you suggesting that vitamins, minerals, trace minerals, phyto nutrients, enzymes, etc. are not healthy? There will always be incidences of people who eat and live unhealthily living long lives, but they are the exception rather than the rule. I have read of someone who lived past 100 who smoked cigarettes all his life. It is a proven fact that cigarette smokers life spans are significantly less than non-smokers. Likewise, the longest lived peoples on earth tend to be those who eat a mostly raw, mostly vegan diet (perhaps with some healthy fats included) and live a healthy lifestyle.
Your sarcasm is duly noted. I have never claimed to have anywhere near all the answers but do try to provide the best answers I know or can find. Just so we are clear here, if you are trying to pick a fight with me in my own forum it is one you are doomed to lose.
All the best,
Tony
Once again, this poster has had his message removed due to it contributing nothing of substance and being filled with derogatory comments and name-calling about the original poster, myself and other members of CZ.
As a result, he now joins a very select handful of people who are no longer welcome in this forum.
This is not a forum that allows name calling or hate messages, nor is it a debate forum, although alternative opinions and answers are welcome. What is not welcome here is abusive posts.
Tony
Thanks to one of our members I am in the process of reading the amazing story of famed herbalist John Raymond Christopher. I highly recommend that you read this chapter:
http://www.herballegacy.com/War.html
The entire book is fascinating and uplifiting but I think that particular chapter may be especially valuable for you as it contains a great message of hope and determination and includes some specific references and information about healing difficult skin conditions.
All the best,
Tony