[doUhaveLupus]

Hi all,

My interest in this topic is because I have been scheduling Friday night sex since my late 20's (mid 1980's) for reasons aptly descibed by POIS. However, I have been treating myself instead for mild Lupus, with some success.

Lupus in men is very rare - 1 in 10,000 or 0.01% of men have the condition. I want to raise the issue here because many men with Lupus do not know they have the condition, and some of the people posing on this forum topic seem to be showing Lupus like symptoms.

I actually started taking mild multivitamins during adolesence (early 1970s), and stronger ones in late teens for fatigue that I thought was normal.

At 19 I was seriously traumatised by a malicuos diagnisis of schizophrenia. When I refused treatment I was  unlawfully treated as an involuntary patient. This inflamed my undiagnosed (ie. at that time) Lupus condition. My Aunt, who had overcome severe arthritis  with daily celery juice and diet(she was told she would be permanently crippled by age 25 - never happened), as well as my own success fighting fatigue with multivitamins, inspired me to try Abram Hoffer's vitamin remedies. (NB: Hoffer has since been discredited over his theories regarding Pellegra and Polluria in the very book I was reading).

In 1983 I started experimenting with B1, B3, B6 @ 100mg - 500mg daily doses, and C @ 1-3g daily doses (NB: not all at the same time). I remember after one week on just B3's I felt distinclty "queer" (ie as in "gay" but not in a overtly sexual way) and like being high on some kind of fantastic wonderful drug. It certainly had a positive effect on my attitude and creativity. By day, I began acting out really strong self appreciating fantasies. By night, my dreams were in vivid bright technicolour, and I had some sensational orgasms, almost nightly. My point being that there I noticed a strong wierd connection between B3 and what I would call my psycho-sexual responses. However this artificial "gay" state was too strange for me and I discontinued when I started getting spontanious nosebleeds, but there were never any lingering side effects.

When the issue arose, the shrinks refused/disagreed with my taking B3. They were absolutely determined to treat me for a schizophrenic condition I did not have, and refuse my self treatment for a condition I did have. (30 years on and I still wonder what kind of psychopaths are these people to do that to a 19 year old?)

After that my undiagnosed Lupus and idiot psychiatrist torturers slowly tried to get the upper hand, in spite of continuing strong multivitamins. Finally, in 1990 (after losing the best 10 years of my life) I started a diet/vitamin treatment plan for Lupus suggested by Dr Chris Reading (Sydney, now retired), including up to 300mg B3 daily. (Chris Reading was at the time fighting deregistration by the AMA over his diet/vitamin treatments. Fortuanetly he won.)

After about 3 months I found I could reduce this treatment down to just one daily B-Complex containing at least 100mg B3, plus a full cover of the other B's (100mg), and have never really looked back, in spite of a few Lupus flares each year.

I've been on this simple treatment for over 20 years now, however sex still remains a scheduled weekly event because until recently I have accepted my POIS as untreatable.

I want to raise awareness of Lupus in Men here, not only because Lupus in Men is so rare, but also because Lupus is extremely hard to diagnose, and it seems POIS may be an extremely useful diagnostic indicator of Lupus in Men.

It would be great to hear from any men who believe they have both Lupus and POIS.

 

[John21 (OP)]

GC, that is fascinating! Hopefully it keeps working. I had bought in to the "we have way too much salt in our diets" notion and have been on a relatively low salt diet. It is interesting that some people claim a high salt diet is not the problem, but rather a high table-salt (processed) diet. You make me want to try salt/C for a short stint, should be fairy obvious if it is doing something beneficial.

Personally, for the record I am no longer taking dandelion. I was having tiredness reaction which may have been due to elevated lithium levels. Apparently dandelion can reduce the body's ability to rid itself of excess lithium, that is why it is not advised to take dandelion when on lithium. I was consuming a very low level (much less than recommended), so I didn't expect problems, but if it is going to mess with my system I can't continue with it. For those who don't know I noticed an increase in mental clairity while consuming diuretics, such as dandelion. Some diuretics can deplete your potassium but dandelion is not supposed to do this.

[Vasian1980]

After receiving the vitamin C and sea salt, I felt a wave at a particular drowsiness and tachycardia!

[demografx]

AGAIN, this is just what has been helping me and I am not saying it will work for anybody here on this forum.  I don't want to get anybody's hopes up about this and finding out it doesn't work for them.  I can tell you personally that I am known for speaking like this.  All of our bodies are different.  I am keeping my fingers cross and hoping that it holds up.  GoingCrazy out

GoingCrazy, thank you very much for reporting CAUTION and warnings when describing experiments and cures and treatments.

One man's cure can be another man's nightmare.

We're all different; let's respect those differences. Thank you for doing that, GoingCrazy.

[GoingCrazy]

On the other hand, Do you really think that you could have Lyme disease? - But if that were the case, would your treatment help to get rid of this condition once for all or are you going to continue to take it every day?

I am almost certain that I don't have lyme disease, I've tested negative twice.  I am just saying that the "natural" treatment for lyme can at least help with this disease.  I am going to continue to take the vitamin C with sea salt twice per day, 1000 mg vitamin C combined with 1/2 teaspoon of salt--- that dosage twice per day, one in the morning and one at night.  I am not saying that I even need to take any more of it right now, but why stop?  I feel great and yet it is probably too early to figure out if this is the cure or not.  I want to continue this stuff for at least another month or two before I get off of it and have a couple orgasms.  But right now I feel great, a definite increase in mental clarity, feeling more "in" the moment and just great all-around.

Hi GoingCrazy

1500mg or 3000mg of vitamine C per dose,it is so big ratio,isn't it ?.
have you ask doctors if it is safe to take this amount of vitamine c?
in the web I found that the safe amount of daily v. c is 100mg!
and I wanted to know how long (year)did you suffer from pois?
can I add the sea solt to the juice?
thank you..

Both sea salt and vitamin C are water soluble so you can take high amounts without it causing a bad affect on your body, as long as you drink enough water.  The trick might actually be to not drink too much water and than as you feel a little "altered" than go ahead and drink more water.  That is what I was doing the first week.  I literally felt the salt in my saliva like I said before.  I've been suffering from POIS the past 5-6 years.  The way I take the sea salt and vitamin C is use 1/4 of a teaspoon of sea salt and just put all of that on your tongue and than swig it down with a couple of gulps of water, than use another 1/4 teaspoon of sea salt and swig that down with a couple gulps, than the 1,000 mg vitamin C.

Anyways, your results are encouraging, as you mentioned - the affect is immidiate,  Therefore, soon we'll see if there are more people who find that treatment succesful.

Good Luck !

Just so you remember, yes the affect was immediate (you can feel it 15-30 minutes afterwards) but before that I was taking 1500 milligrams of vitamin C per day for about two months (also the claritin but than stopped) and than added the sea salt.  So I am not sure if it will take more time for anybody else here because I was taking the vitamin C for 2 months prior.  But yes, when I added the sea salt I noticed an instant relief.  It feels great to actually sleep at night and feel tired!

Very interesting, GoingCrazy. When do you take the sea salt?

I take it once when I wake up and once when I go to bed.  But you can probably take it more often than that as you'd like, this is just what I did.


----------------------------------------------------------------------------------------------

I've also received a couple of PM's so I've decided to answer them here.

Strangely, I feel a lot more motivated and happy even in day 1 of pois which used to be the worst struggle for me, especially if I have to work on day 1.  Yesterday, day 1, after previously O'ing 3 times  (I should probably stop I know haha), I had the motivation to get up and clean my whole backyard of twigs and giant branches from a storm that happened some time ago.  I actually felt happy, calm and with energy while doing it.  I seriously feel that something in the salt and vit. C is giving me energy and relief.

I've had 4 or 5 sessions since taking vit c and sea salt without POIS.

And I did feel a little "strange" but a good strange after taking the sea salt.  You can tell that your body is not used to it so it reacts. 

Again, I was taking vitamin C for about 3 months, 1500 milligrams per day, once in the morning.  So if somebody just starts vitamin C and sea salt, just remember I was on the C for months prior.  That might have had something to do with it.  (I am repeating myself I know sorry).

I also worked today off of 6 hours of sleep last night, usually I would be mentally down and depressed because of the pois, but it's like all of my fears went away, I can sleep, and I actually felt just a bit "tired" this morning which is a totally normal feeling, the tiredness went away as the day went on and I had none of the pois agony whatsoever. 

Edit:  The kind of Sea Salt I am using isn't your typical table salt.  It is coarse crystals without iodine from spain and I got it at Wal-Mart, the brand is Morton and is says coarse sea salt, "this salt does not supply iodide a necessary nutrient"  Ideal for rubs, roasting and finishing... Sea salt from spain.  Here I can probably find it:

http://morton.elsstore.com/view/product/?id=21219

I am looking forward to here from others results from this treatment if they have decided to do so.

[GoingCrazy]

AGAIN, this is just what has been helping me and I am not saying it will work for anybody here on this forum.  I don't want to get anybody's hopes up about this and finding out it doesn't work for them.  I can tell you personally that I am known for speaking like this.  All of our bodies are different.  I am keeping my fingers cross and hoping that it holds up.  GoingCrazy out

GoingCrazy, thank you very much for reporting CAUTION and warnings when describing experiments and cures and treatments.

One man's cure can be another man's nightmare.

We're all different; let's respect those differences. Thank you for doing that, GoingCrazy.

You're welcome

[demografx]

I had horrible POIS for 30+ years.

"Working" this forum cured me.

You can do the same.

Get involved. Study the resources here. Hard. Experiment safely with the very best medical team you can afford. Most important: Don't just make appointments with your doctor: TAKE CHARGE!

[demografx]

If you post here, you're involved. If you're a silent reader, enjoy the resources!

[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?

[John21 (OP)]

I tried 1/2 Tsp of sea salt / 1500mg C twice yesterday and I didn't feel any different, it did not improve my insomnia, so maybe it's not for me. But it does make sence to me to use sea salt over regular table salt, it's hard not to after reading this:

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

EDIT: Maybe I will try this for a duration. It did not help my sleep but I did feel good and was thinking clearly the next day. I think I'll try 1/4tsp with 1000mgC twice daily, this is half of what GC is taking.

[Stef]

Hi All,

I read this post today on another forum that focuses on an entirely different disorder (not POIS). The author is a biochemist (from a major medical institution) who had recently retired with his wife to the Ozarks (a lifelong dream!!) They wanted to retire to a very rural area, get away from all the hub-bub of a large city, have a farm and raise "critters.  "We have cattle, pigs and horse's, goats, as well as the usual collection of dogs and cats, and chickens and ducks."

His rare disease is called "stiff person syndrome" and has NOTHING to do with POIS (don't want to scare anyone!). The disease basically is what the name implies -- it's even worse than that.

Here's his post --

"Invisible Diseases can rob you of your 'self', your ability to cope, your very existence. You feel as though nobody cares or believes you -- you are so desperately trying to get them to understand what is "truly" happening to you. You are 'NOT' just lazy, or lying to them because you just don't 'want to clean your house, or cook, or mow the lawn, or you're just looking for attention."

"It's just the opposite. You can't, not in your wildest dreams make some of these things up. It is just a damn crime -- your body turning against you the way it has! So I am saying this to you all -- you should "NOT" have to be going through this alone, and we need to keep the research going!

I'm asking "all" of you going through these trying times, whether you are living alone, or you just 'feel' like you are, because your 'Significant Other" or family just doesn't "GET IT"-- please contribute! We all are in this together, and TOGETHER WE WILL ALL GET THROUGH THIS."

Cured?... Maybe it WILL happen!!! But feeling just a little better-- for a day, a moment, or before you lay your head down for the night, that is what this is all about ..." So share your strength, hope, despair...everything.  And contribute your money -- every donation for research is a step out of the misery!!"

This group -- not a formal organization but an international forum similar to the SMF and NSF forums -- have already launched their first research grant through NORD. 

***They are severely disabled by this monster called "stiff person syndrome". No one on that forum is gainfully employed to my knowledge.  I don't think they've even had fund raisers -- they just kicked in what they could.

Go for it -- try to get some close friends and loved ones on board!  Sell stuff on Ebay. (My husband is still selling those obscure electrical devices -- six have been posted and six have sold. He's got four more to sell.)  Someone else -- take up the crowd-sourcing theme (like Cc and Mel did with reddit) -- you're all in this together.

Just keep your eyes on the prize -- get the initial research started -- the rest will follow!

 

[demografx]

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.

[demografx]

Just keep your eyes on the prize -- get the initial [POIS Medical] research started -- the rest will follow!

THANK YOU, STEF!

[demografx]

Stef's "...the rest will follow" means that once we have RESPECTABLE AND PROFESSIONAL research conducted on POIS, the rest of the (medical and research) world will sit up and take notice!

[GoingCrazy]

I tried 1/2 Tsp of sea salt / 1500mg C twice yesterday and I didn't feel any different, it did not improve my insomnia, so maybe it's not for me. But it does make sence to me to use sea salt over regular table salt, it's hard not to after reading this:

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

Maybe you need to give it more time, or maybe the amount for you isn't right.  One day taking it is not really a fair chance.  I weigh 150lbs so just think so maybe 1/8 teaspoon of sea salt per 37.5 lbs you weigh might work.  Feel free to do what you want but I don't think it would be an "instant" cure for POIS, like I gave vitamin C 2 months prior to introducing sea salt.  Or maybe the treatment might not work for you, I simply don't know and we all might have different things in us that cause pois.  I am kind of dissappointed that it didn't work for you because I feel great.  I stayed up until 5 in the morning and had to work at 11, and I still feel great.  I hope that this helps some people.

P.S.  you mentioned that you didn't feel any different after taking the sea salt and C, but you should feel different just after taking it due to your bodies reaction to it.  Maybe its that reaction that helps.

John this is from that link that you provided. 

"For the great majority of people a low-salt diet does not work. Patients do not feel well when sodium levels are lowered. Their energy level drops and they develop hormonal and immune system imbalances."

Again it was not just sea salt and C that I was taking, maybe it was the claritin vit. C combo that did something too, I simply do not know.

Edit:  I posted this before john21's edit

[doUhaveLupus]

I tried 1/2 Tsp of sea salt / 1500mg C twice yesterday and I didn't feel any different, it did not improve my insomnia, so maybe it's not for me. But it does make sence to me to use sea salt over regular table salt, it's hard not to after reading this:

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

I dont want to belittle the poster, as we all get sucked in by novel treatments until we learn the importance of checking everything fully, however...

1. High salt intake is the fastest way to high blood pressure and ultimately kidney failure. High salt intake cannot possibly improve your health. Salt intake should be reduced, as processed foods in 1st world countries are all full of salt, as well as sugar and vinegar - the big 3 - simply because any food that includes copious amounts of one or more of these will sell like potatoe chips (which contain all three). Hence the American obesity epidemic.

2. High Vit C intake is the fastest way to hardening of the arteries, which can lead to deep vein thrombosis, stroke, as well as high blood pressure and ultimately kidney failure.

I've been investigating dietry based treatments for nearly 30 years, and while some things do work, many, many, many other things do not. Follow the scientific model and do your research properly. Never trust advice from any source, especially a vendor sponsored one, that only talks about benefits or downplays/disregards the risks. Check out the potential dangers and make sure you fully understand them before you embark on any self help treatment. Failure to do so will cost you more than your health, it could kill you both slowly and painfully.

[GoingCrazy]

I tried 1/2 Tsp of sea salt / 1500mg C twice yesterday and I didn't feel any different, it did not improve my insomnia, so maybe it's not for me. But it does make sence to me to use sea salt over regular table salt, it's hard not to after reading this:

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

I dont want to belittle the poster, as we all get sucked in by novel treatments until we learn the importance of checking everything fully, however...

1. High salt intake is the fastest way to high blood pressure and ultimately kidney failure. High salt intake cannot possibly improve your health. Salt intake should be reduced, as processed foods in 1st world countries are all full of salt, as well as sugar and vinegar - the big 3 - simply because any food that includes copious amounts of one or more of these will sell like potatoe chips (which contain all three). Hence the American obesity epidemic.

2. High Vit C intake is the fastest way to hardening of the arteries, which can lead to deep vein thrombosis, stroke, as well as high blood pressure and ultimately kidney failure.

I've been investigating dietry based treatments for nearly 30 years, and while some things do work, many, many, many other things do not. Follow the scientific model and do your research properly. Check out the benefites as well as the potential dangers and make sure you fully understand the latter before you embark on any self help treatment. Failure to do so will cost you more than your health, it could kill you both slowly and painfully.

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. 

[doUhaveLupus]

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.

Its simply patently wrong to say that any kind of sugar increase can benefit you if you already have more than enough. High sugar leads to diabeties, tooth decay (etc). High salt is even worse for you.

If you promote things like that to the public without explaining the known dangers, then people like me will come along and explain them for you, and I can assure you they wont be nearly as diplomatic about it as I am.

[Stef]

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 -- Šnordnurse 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."

[GoingCrazy]

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.