[demografx]

Hi All,

I feel compelled to comment about the website link that Going Crazy provided the -- http://www.lymephotos.com/.

That is exactly the kind of website that sets up every red flag possible! 

Nothing is substantiated in it.  Those photos of microfilarial worms and spirochetes are not the slightest bit impressive -- there is no REAL documentation of their source -- they say that the photos are copyrighted -- but who knows?  I can easily insert a copyright mark right here -- Đnordnurse 2012.

(Fake copyright on my part -- don't take it seriously!!!!!)

There is no way of knowing who is actually publishing the site.  There here are no scientific references, nor is there any real contact information (other than an email: webmaster@lymephotos.com).  There is no mailing address -- A VERY BIG RED FLAG!

You owe it to yourselves to be extremely cautious of this type of anonymous website.

Last but not least, the amount of sodium suggested is extreme.  Many people cannot tolerate that amount -- it can raise blood pressure and/or affect the kidneys -- serious issues.

That amount of Vitamin C can also cause diarrhea.

This regimen may be helping Going Crazy -- I hope it is, GC!!  I mean that sincerely. Even if it's a temporary improvement -- it's great to hear that you're feeling so much better.

Everyone --just please use caution, especially with websites like that one. 

To paraphrase demografx, "One man's food is another man's poison."

Thank you, Stef!!

[kurtosis]

Someone has candida?

Well, we all have candida but perhaps it's a problem for some/all POIS sufferers. Garlic brings relief for both, right?

(1) From Quack Watch:
http://www.quackwatch.com/

"Candida

Candida ("Candidiasis hypersensitivity") is another bogus diagnosis whose symptoms are said to be multiple and include fatigue, depression, inability to concentrate, hyperactivity, headaches, skin problems (including hives), abdominal pain and bloating, constipation, diarrhea, respiratory symptoms, and problems of the urinary and reproductive organs. The main promoter of "candidiasis hypersensitivity" has been William G. Crook, M.D., of Jackson, Tennessee, who wrote and published The Yeast Connection. According to Crook, "If a careful checkup doesn't reveal the cause for your symptoms, and your medical history [as described in his book] is typical, it's possible or even probable that your health problems are yeast-connected." To correct these alleged problems, he recommends allergenic extracts, antifungal drugs, vitamin and mineral supplements, and diets that avoid refined carbohydrates, processed foods, and (initially) fruits and milk.

The American Academy of Allergy, Asthma and Immunology regards the concept of candidiasis hypersensitivity as "speculative and unproven" and notes that everyone has some of its supposed symptoms from time to time. The academy has warned that some patients who take the inappropriately prescribed antifungal drugs will suffer side effects and that overuse of these drugs could lead to the development of resistant germs that endanger everyone."
From http://www.quackwatch.org/01QuackeryRelatedTopics/fad.html

(2)"Bogus "Candida" products are prescribed by nonmedical practitioners (e.g., chiropractors, naturopaths, "nutritionists") and maverick medical doctors who may call themselves "clinical ecologists." The latter claim that candidiasis is an underlying cause of "environmental illness" -- an unrecognized medical condition that they postulate to exist."
From National Council Against Health Fraud
http://www.ncahf.org/articles/c-d/candida.html


(3) Candida has been discredited here at our POIS Forum. Click here.

Quackwatch is a bit smug. The whole reason for a site like quackwatch to "debunk" a diagnosis like candidiasis is that there are many many people who feel sick but whose doctors haven't a clue what's wrong with them. Please don't interpret this as a support for naturopaths or other practitioners of alternative medicine with a very flaky grasp of science and medicine. However I don't think the orthodox medical establishment needs my sympathy either. They're doing OK and, when they're not, they can always write a diagnosis of psychosomatic illness. Orthodox medicine's bogus pseudo-scientific catch all diagnosis that's been given to many people here.

Everybody has candida. Indeed it's required and nobody would want to "eliminate candida". It is possible to have a candida overgrowth and an infection of the bloodstream and organs. Wouldn't be a problem in a "healthy individual" (whatever that is without a compromised immune system. I don't think that applies to all POIS sufferers.
It would be good to keep track of any gastrointestinal issues that POIS sufferers have experienced. I had a colonoscopy and found flattened vili. I remember that some other posters have had problems with stomach bacteria and ulcers.

[demografx]

For digestive issues, a good reputable gastroenterologist is all that is needed, IMHO.

[demografx]

Candida

This is a terminology issue with kurtosis.

I am using a term that has been largely discredited by most reputable medical professionals.

The discreditation has been referenced here EXHAUSTIVELY. You have the tools to search it.

The WORD candida does have some other meaning, so kurtosis, I'm sorry if there is disagreement.

[kurtosis]

For digestive issues, a good reputable gastroenterologist is all that is needed, IMHO.

Hi Demo,
I'm sorry if I was tetchy.
 
Perhaps it is a terminology issue but I'm a bit annoyed at the reaction to GC's potential cure. If he's getting relief then well and good. POIS is bad enough and I'm not going to talk him out of it. Whatever about the health risks of consuming lots of salt, now vitamin c is the "fastest way to harden arteries". This is simply not true. It is not backed up by consistent medical studies and indeed the American Heart Association's journal published the exact opposite result in a 1995 study that hasn't been dismissed or discredited.

Regarding a reputable gastroenterologist, even the cause of something as widespread as irritable bowel syndrome is subject to different theories and treatments. An auto-immune syndrome, floral overgrowth, psychological or a combination of all or some of the above.

I don't think we can dismiss any cause of POIS (or even the possibility that POIS is a manifestation of something else) until we learn more. That doesn't mean we should be reckless but I reckon most GP's would be shocked at the dosages of niacin that are being taken by some forum members. In the pre salt+c days (under a week ago, nostalgia we seemed to accept there were some risks. We all know why we're doing it. POIS is devastating. On a personal level I'd sacrifice a lot to never have to worry about it again.

[Stef]

Because it seems to deminish my Pois 100%.  This is just a temporary treatment "try out" that I'm doing.  I decided to try it after reading this.  http://www.lymephotos.com/   Just to see if it did do anything to me as I've always thought I was sick with some disease, possibly lyme, but it seems to be working.  I do agree with you though, I'm not trying to take this stuff the rest of my life.  And yes, high salt probably is bad for you, even after reading John21's post link, I am only doing it because of this condition.  Any normal person obviously wouldn't be taking that much amount of salt.  But the possibility it could be killing some kind of bacteria or something is just a possibility and the health gain.  It may be and probably is putting strain on your body but again I'm willing to take that risk. 


Nordnurse, yes the site is not validated from anything, but just looking up the idea of sea salt and vitamin C seem to be working for some people.  The good news about the website is that they are not trying to sell anything, I think that would be an even bigger red flag.  And I agree with the photos, it does look like someone randomly just didn't have the time and just set up the web site, but who knows, sea salt and vit. C might be able to do something, or it might not work.  For me it is working this very moment, but only time will tell.

[/quote]

The rewards may beat the risk on this one.  I believe these studies are over a period of time.  I don't think we should be worried about taking vit.C and Salt for the amount of time we are trying to take it, say possibly, if less than a month.  But I will definitely take this risk if it means less, or even a cure for, my POIS. 
[/quote]

Hi GC,

You're right! They aren't selling anything -- that's a very important point!

From what I've read on these posts -- the absolute misery of POIS may trump some of the risks.  No one has a clue as to what POIS really is. (I don't say that casually!) Maybe for some, extra sodium would be helpful.

For some it could be deadly -- so be very careful, everyone!

My main point was really the website itself -- it's lacking important data, causing it to stand out like a sore thumb from my point of view. 

Who knows -- perhaps the salt and Vit C can be helpful for some with POIS -- if used very cautiously.

(If any of you has a home blood pressure cuff -- and you're considering doing this salt/Vit C combination -- now would be the time to drag out the blood pressure cuff.)

Just monitor your symptoms, GC -- if you're retaining fluid (you'll know it!), take a break.  Keep us posted!

Most of all, good luck to you!!

[observercenter]

I don't think we can dismiss any cause of POIS (or even the possibility that POIS is a manifestation of something else) until we learn more. That doesn't mean we should be reckless but I reckon most GP's would be shocked at the dosages of niacin that are being taken by some forum members. In the pre salt+c days (under a week ago, nostalgia we seemed to accept there were some risks. We all know why we're doing it. POIS is devastating. On a personal level I'd sacrifice a lot to never have to worry about it again.

Kurtosis is raising a very important topic here. I agree with him when he says that we seem to accept some risks, but there is an important life-problem with this.

From my own vital experience, POIS is not a problem in my life anymore. It seems a nightmare from the past. I have not experienced full-blown POIS state since months(however i have had very minor POIS when something has gone wrong with the niacin, nothing important), but i know that i am not cured and that i am following a treatment(Niacin) that will go with me, at least on the short-term. 150-200mg Niacin some days is a small dose, the worrying point here is that it could turn into a chronic treatment(all of our lives?). Here is the problem: How could this affect us on the long term? It is sure that we are taking some risks? These questions stand the same for GoingCrazy new treatment. The treatment strikes me as an aggressive one, and like demografx has said, i am not sure it would be as good as we could think for all of us; but i am not going to be the one to cast a stone at him. I only will suggest him(and everyone) to ask qualified doctors and check their advice.

So, the main question is: Are we willing to sacrifice our health on the long term for short-term or medium-term relief? I seriously believe this question could become unsubstantial when we get the most answers on this issue, because we wouldnīt need to sacrifice our health again. And right now we have a lot of questions, and very few answers. Dr. Waldinger is only one man;  are we going to wait only for one medical team to resolve this issue and to explore new treatments? Then, it could take an eternity and beyond. As he said during the interview, more research is needed. We need to get the medical community behind us and raise the awareness of this ugly condition. The N.O.R.D. research grant seems to be a very good opportunity to make this happen. Writing e-mails about POIS to different and prominent doctors all over the world is another one.  Letīs put all our strenght into this.

For my part, I am not the one to take my health lightly. I am going to perform blood tests periodically(I did two some time after beginning the niacin treatment). I donīt want to turn into a hypochondriac individual, but i am not going to play with my life. I want to live it at its fullest(like i am doing now) without worrying about my future on this particular issue(which has been the most important on my past).

Finally, i want to show my enormous gratitude to each and every one of you for helping me to change my life and for your words of support about the interview i did. Your success will always be my success. 

[demografx]

observercenter, we ALL owe you a debt of gratitude for your phenomenal work and involvement on the POIS TV Documentary of April 12 on ABC Australia TV.

THANK YOU AGAIN!

Everyone, Click here to see the POIS TV Documentary, if you haven't already!

[demografx]

Click for new POIS publicity. Not exciting content but at least shows the POIS word is getting out there!

[B_Daniel]

I would like to make a request on this forum: If you advertise that something cures you and then realize that your improvement was unrelated to your 'cure' and that you didnt 'cure' anything, please admit to the group that you were wrong.  This is a scientific forum, and your successes and failures should be equally documented.

[B_Daniel]

Why would you up your salt intake if you are already getting way too much each day from the processed foods you buy in the supermarket ? Its like me saying hey, I've discovered that taking a half a cup of raw sugar gives me relief.

Agreed.

[kurtosis]

There are more and more sites, blogs and forums talking about Pois.

Great news.

[John21 (OP)]

doUhaveLupus, thank you for your opinion on this. I know that this is the widespread view, and was exactly my belief, but the article sounds believable to me. I am aware of how there is alot of grayness in our understanding of what exactly is healthy and that at times even the scientific community has it's group think moments. In that light I am open to this perspective of Dr. David Brownstein, M.D. Perhaps his ideas are not the full story but it sounds well researched. Can you point me to a source that debunks what he is saying? Again here is his link:

http://www.celticseasaltblog.com/articles/salt-articles/salt-your-way-to-health/

[Habibou]

Great Job for the TV Documentary !!!

DO NOT HESITATE TO SHARE YOUR BLOOD TEST RESULTS ON THE OTHER FORUM : http://poiscenter.com/forums/index.php?topic=98.0

It could help us to see some common disfunction... we could even split into sections (hormonal, immunology, vitamin and others) like a real database.
Of course, the most important stays the NORD fund !
Thank you !

[fidalgo]

Hi people...

I read this interest question about the GoingCrazy treatment. I start it yesterday and Iīm with hope that will work. I realize some improve in my POIS today and Iīm going try especially because he describe it like a cure, he doesnīt have symptom of POIS after masturbation anymore.

First of all somepeople said here that salt is bad for blood presure. This is not true. Salt is not recommended for people who have high pressure. If you donīt have high pressure, salt wouldnīt make you seek. And, the quantity of salt he used is not more than the salt have in a Coca-cola glass. So, this treatment with salt doesnīt have risks for normal people, only for people who have high blood presure. And, like someone speak here, we already eat too much salt, this isnīt increase our saul diet a lot. About the C vitamin Iīdon t know. But itīs only the double of the normal dose but it not seem tha make too bad. Today I have diarrea like the website said.Indeed, I donīt believe in C vitamin...

I start to take salt last night and I see some improve. What make the improvement is not the sault in our blood because of that a high salt diet not improve ourselves. What make the improve is the sault in my mouth and tong. It's like the sault taste confronting pois. You have to let the salt in yout tong and wait. Just drinking the sault doesnīt have effects. C vitamin I canīt say if it helps. Indeed, I donīt believe in C vitamin but Iīm trying to do the samething that GC to see if works.

I will try this treatment and after I will tell for you if works. But itīs too strange you think a threatment with salt is more dangerous than niacin.

[doUhaveLupus]

... In that light I am open to this perspective of Dr. David Brownstein, M.D. Perhaps his ideas are not the full story but it sounds well researched. Can you point me to a source that debunks what he is saying? Again here is his link:

newbielink:http://www.celticseasaltblog.com/articles/salt-articles/salt-your-way-to-health/ [nonactive]

Why dont you just read the first paragraph of his Home page ? He states quite clearly that "Government agencies, the American Medical Association, and many dietary groups all recommend a low-salt diet."

This guy is clearly $elling a product, not a health service, and on the internet no less. And you want to trust him more than "Government agencies, the American Medical Association, and many dietary groups" ?

 

[doUhaveLupus]

First of all somepeople said here that salt is bad for blood presure. This is not true. Salt is not recommended for people who have high pressure. If you donīt have high pressure, salt wouldnīt make you seek. And, the quantity of salt he used is not more than the salt have in a Coca-cola glass.

If you're only taking as much salt as in junk food drink, why would you need this treatment if you alrready had 3 or four serves of junk food.

Sorry, but this salt theory can only appeal to people who have rejected accepted, tried and tested scientific and/or rational thinking, and with that said, I have nothing further to add to this.

[John21 (OP)]

... In that light I am open to this perspective of Dr. David Brownstein, M.D. Perhaps his ideas are not the full story but it sounds well researched. Can you point me to a source that debunks what he is saying? Again here is his link:

http://www.celticseasaltblog.com/articles/salt-articles/salt-your-way-to-health/

Why dont you just read the first paragraph of his Home page ? He states quite clearly that "Government agencies, the American Medical Association, and many dietary groups all recommend a low-salt diet."

This guy is clearly $elling a product, not a health service, and on the internet no less. And you want to trust him more than "Government agencies, the American Medical Association, and many dietary groups" ?

 

Perhaps you are right, I will have to look further into this. Thank you for your caution!

[fidalgo]

First of all somepeople said here that salt is bad for blood presure. This is not true. Salt is not recommended for people who have high pressure. If you donīt have high pressure, salt wouldnīt make you seek. And, the quantity of salt he used is not more than the salt have in a Coca-cola glass.

If you're only taking as much salt as in junk food drink, why would you need this treatment if you alrready had 3 or four serves of junk food.

Sorry, but this salt theory can only appeal to people who have rejected accepted, tried and tested scientific and/or rational thinking, and with that said, I have nothing further to add to this.

That is what I had said. What help POIS isn't eat salt but let it in your mouth some minutes. I think the message your mouth sent to our brain saying the salt taste help in a someway...

But I will stop to defend the method.... I will try this week and after I said for you if work or not to me.

[napkynbass]

Hi guys!

Someone has good results with niacinamide? I know that is not the best choice, but i will try if helps!

I'll wait for your feedback.

Thanks