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I have been extra motivated to discover the cause of this awful problem since it's all over my face, and discovered this forum in my search for answers.  The doctor's antibacterial and cortisone cream did not help me except for the redness.  Of course, nothing helps except to dig the things out, and that takes forever and is so ugly, well, you all know that.

To get back to the important stuff, what I have discovered since reading over your comments below, having a bad cold the past week, and doing a lot of thinking and not thinking, I do believe I have a Solution which has worked on me so far that I have no new nodules.  I just need someone else who has this to try my solution and see if it works for you, too.

I thought about the person who soaks in epsom salt getting results, and the person who gets mosquito bites and thus a nodule, and having to take antihistamines for my cold, and my subconscious must have put it all together and came up with a Histamine Intolerance.  More of that at the bottom after I give you my solution.   But our problem goes beyond histamine intolerance and I believe is coupled with an autoimmune response that is out of whack and starts to surround the hair follicles with a defense mechanism, mistaking the hair follicles with what the histamines went after in the first place, and thus creates the nodules.  The response we get from that is more histamines going to the site of the nodules and creates itchiness, which histamines do, we scratch, then create more sites, more histamine, more nodules, and on and on, you know the drill.

I developed this solution over the past week after reading what googled sites have to say about histamine intolerance.  Know that the body produces histamines naturally and we get histamines in our food, some foods being higher or lower in histamines depending.  If you have histamine intolerance, your body does not have enough vitamin B6.

Here's what I did:

1.  Start taking an antihistamine.  I started with Benedryl because that's what I had on hand, first for my cold, then a liquid children's I had on hand sipping it all day long.  I since switched to Claritin since it doesn't make me sleepy and my cold is now almost gone.  I take a 10 mg. tablet and take half with breakfast and half with dinner, 5 mg at a time.  Don't use Benedryl if you need to drive, study, watch children, or do anything else but sleep.  The difference between Benedryl and Claritin is that the Benedryl gets to your brain and the Claritin does not.  I don't need the antihistamine in my brain, just in my bloodstream to fight the histamines going to my skin.

2.  I stopped eating high histamine foods and started eating more onions (cooked) because they contain natural antihistamines.  Also camomile tea has natural antihistamine properties.  I will list some of the high histamine foods below so you can start right away, but I recommend you google 'foods with high histamines'.  There are lots of sites that will list them for you.  Be careful of sites listing foods with antihistamine properties because a lot of them are high histamine foods and are off our list, like lemons, limes, tomatoes, and others that contain vitamin C and antioxidants.  If you aren't sure, I would google 'histamine content of tomatoes', for instance.  Some of these sites will confuse antihistamine with anti-allergy, which is not at all the same.  We do not have a histamine allergy.  We have a histamine intolerance, which is quite different.

3.  I used the Benedryl tablets I had, crushed some, and made a paste with a little water and rubbed it into my open and closed sites.  I did that because they warn you not to use Benedryl cream for more than a few days and not at all on broken skin, and mine is all broken, on my face, chest, shoulders, and wherever else I had any old or new nodules. This has really helped.  Once the paste dries, it tends to stick on the open nodules and form a hard sort of crust which I leave on all day.  I believe if you have the capsules, all you will need to do is open a few, pour out the contents into a very small dish, add a little water to make the paste, and rub it in.  This seems to stop the histamines in their tracks and so no new nodules have formed on my old sites, and the nodules that are already there are much easier to remove.  I still have to remove the nodules but don't have to dig very deeply and I just let the benedryl do the work for me.

4.  Then I learned that now I don't have to make a paste unless I want to.  I just take a shower, and while my skin is still moist, I scoop up a little of the powdered benedryl with my finger and rub that into the open sores.  On the old ones that are closed already, I rub the powder over the area and just leave it there.  After my skin dries, I can apply a liquid makeup on my face to cover  up the uglies, which still leaves the benedryl there, along with the makeup, and it seems to continue to work.  The open ones on my face still have the hard crust, but the makeup hides it pretty well, and I add a little face powder to make it even less noticeable.

5.  I take 25 mg. Vitamin B6 twice a day with my antihistamine tablet.  The tablet I use contains also B1 and B12 since I couldn't find just B6.  I use half a tablet which contains 50 mg B6, 100 mg B1 and 500 units B12, thus the 25 mg. B6.  I take it like that because B6 is a soluble vitamine and does not accumulate in the body but is washed out.  I went to the tablet because I don't think I could eat enough food to compensate for my lack at this point, and we really need the B6 to help solve this histamine problem.  I read this on one of those histamine intolerance sites but can't remember which one.  Also, a lot of the foods they recommend are high in B6 are also high in histamines, which cancels out their benefit for B6 and is a no-no for us.

I think that is the main thrust of what I needed to tell you about the system I am using.  One more thing you should consider is that it seems like everyone has their own unique trigger (this term was used in one of the histamine intolerance sites I visited) for starting the nodules to form.  One of my triggers has to do with plucking a hair or making any opening in my skin.  Someone below mentioned mosquito bites.  Once I do that, my body instantly sends histamines to that area.  Then I believe my immune system runs to the rescue and creates a nodule around the hair follicle, a defense mechanism like an oyster would make a pearl, and then I have a red, itchy nodule.  Then what happens to me is, the immune system makes more pearls around the follicles just next to the original one and forms a circle of nodules just to be sure nothing else can tamper with the original one, and the original one is now 'safe'.  This is the whacked out immune system.  So, the reasoning behind the antihistamine in the first place is, to stop the process before it ever starts to create the nodules.  Antihistamines do not actually negate the histamines.  How they work is to block the site where the histamines want to enter.  It closes the door on the histamines so they never reach their destination.  That is what I have gathered from reading up on the histamine intolerance sites.  That's also why I decided to use the benedryl directly on the skin.  If your body doesn't like benedryl, use a different antihistamine and see if you get the results you need.

I truly hope this helps each and every one of you to get rid of your symptoms.  I have not told any doctors about this, but you are welcome to do so if you get the results I am getting after just a few days.  Be very careful with your diet.  Oh, I forgot to tell you some of the foods you may not enjoy eating any more.  Here are a few of them, but go to the sites for histamine intolerance to get a fuller list. Go to as many sites as you can as some have more complete food lists than others, and some contradict on what you can or cannot eat.  

Do NOT eat:

tomatoes except very green tomatoes.  Ripe tomatoes are full of histamines.

citrus fruits, plums, apricots, cherries, berries, cranberries, raisins, prunes, not much banana, strawberries, and there are others I can't remember.

avocado

fish of any kind or any seafood (fish has histamines in their guts which contaminates the flesh unless it is gutted immediately after being caught)

No canned tuna

canned, smoked or preserved meat, ham, or any food preserved in vinegar like saurkraut, olives, pickles, etc.

lunch meat

cheese of any kind, yoghurt, buttermilk

tea of any kind (tea is made by fermentation of the leaves)  my exception to this is camomile tea which I have found beneficial since it contains quercetin (sp?) which is an antihistamine also found in onions

eat no leftover meat and no chicken at all. The longer meat stays in the fridge, the more histamines it will contain.  If you have leftover meat, you must freeze it right away or feed it to the cat.

No eggs or egg whites except what you will find in baked goods.  I do miss my eggs.

No nuts or peanuts since they make our bodies produce more histamines to digest them

Now if you want to know what you can eat, you will have to look up the histamine intolerance sites to see that list.  There is a lot you can eat, so don't worry.  Apples are good, pears, potatoes, rice, grains, fresh beef, milk, butter, vegetable oil, cereals not containing those fruits that are on the no list, beans except red beans (don't ask me why), peas, and many more.

Only one more thing before I go.  The histamine intolerance sites say that symptoms of histamine intolerance include a lot of the same symptoms many of you have listed in your postings below such as depression, anxiety, some people get angry, and many others.

Please let me know if any of you try my solution, what your results turns out to be, if anything.  If you are using some other treatments on your skin, like I was using hydrogen peroxide, you might want to reconsider whether those treatments are drawing histamines to the skin and making it actually worse.  Many things I have tried actually made the problem worse.  This is the only thing I have ever done that makes it better.

Good luck to you all.

Ava

First, I am using chamomile tea both for drinking and directly on my skin.  I have only positive benefits of this so far.  I really missed my black tea, as I was drinking it all day long, and it is a no-no for this condition.  To the chamomile tea I add a half teaspoon of honey and a few drops of vanilla extract (the real vanilla, not the fake one, so be careful).  When I add the vanilla to the hot chamomile, I believe the heat burns off the small amount of alcohol in the extract, and when I looked up vanilla on google, there seems to be no negatives there.  The flavor of the vanilla adds a lot to the chamomile for me and I don't crave the black tea so much.

I still have no new nodules, which is unusual in my case as I normally would have one or more by now.  The old open ones are beginning to heal quickly and removing the nodules is much easier and there are fewer to take out.  I always do it after I have bathed my skin in the chamomile tea, using the spent tea bag and running it over my skin, then dipping it into the warm or cold tea again and again until I feel it is enough.  After I do that and have finished any surgery, I always use the benedryl powder on the open sore and dust it over the closed ones as I don't want them renewing themselves as they have tended to do in the past.

The diet is not as easy to follow as I initially thought it would be, and I made a few mistakes, such as eating sour cream which is a no-no.  One site said cottage cheese was ok, and another one said no, so I stopped eating that also.  I don't use anything canned or preserved, even if they are allowed, as they warn that histamines continue to to be produced in foods that are preserved.  On my toast in the morning, I cut up a pear or microwave an apple (no cinnamon or other spices) and use that instead of jam or jelly.

I continue to take 5 mg. of Claritin as a precaution in case I happen to eat something I shouldn't, and the B6.  I went back to the site that talks about the B6 and found out why we need that.  Histamine intolerant people do not make enough of the substance that the body naturally produces to stop the effects of histamines.  It has a long name, but they shorten it with the initials DOA, and recommend people with histamine intolerance to take extra B6 in order to increase the production of this DOA.  Perhaps someday after I am free of all nodules and have been on the diet for a long time, I might experiment and find out if I can add some of my favorite foods back into it.  Some things like nuts do not have histamines, but makes the body produce histamines.  Strawberries and some other fruits are the same. Apples and pears are in season now, but in the summer I love to eat fresh fruit and will miss it if I can't.

Still waiting to hear from someone who will experiment with this solution so I can verify that it will really work.

All the best,

Ava

Thanks for response.  Don't know about myself and immunodeficiency, but if vitamin B6 is related to immunodeficiency, which is the precursor necessary to build DAO, the regulator of histamines in the body, then it would be so.  You are lucky to have found out your problem.

I definitely have other symptoms of high histamine levels which are retracting the more I progress.  One thing that has gone away is my muscle cramps in my legs and the wheezing.  I also was taking low thyroid medication which I have stopped.  Someone left a blog somewhere I searched on that said her thyroid medication was making her histamine intolerant also. 

My nodules continue to heal and I have no new nodules.  The benedryl powder was an exceptional breakthrough for me.  I continue also to use chamomile tea as a natural antihistamine on my skin.

Good luck tomorrow.

Ava

So glad you had a good appointment and continued progress seems to be your path.  However, the sites I visited for histamine intolerance say is not actually that broad as to include it as food allergies.  Some foods that are high in histamines, on the no list, either have high histamines themselves or trigger the body to release more histamines as a result of their effect on the gut trying to digest them.  So, basically a histamine intolerance, at least on the sites I visited, do not show as food allergies, so allergy tests do not detect the actual results of high histamine intolerance.  The only real test of histamine intolerance comes about from deleting all histamine foods that are both high in histamines and also influence the release of histamines in the body, such as nuts, for instance.  So, I still highly stress and recommend anyone with PN to do the elemination test for two weeks (recommended on the sites) and then see which foods will react to you personally by adding one food at the time that is high in histamines.  Because I had such quick results the first few days of being on the good diet, I was quite convinced to carry on with it and get more into researching it.  By then I had made enough investigations to continue with the other recommendations for histamine intolerant people, plus adding my own for PN specifically.

LJGC, I also recommend you do the food test itself or you probably won't get the results you are expecting.  Also, if you don't take the vitamin B6, you won't be able to build the needed DAO that regulates histamines in your body naturally and also builds back up the immune system directly, and the foods you eat could actually negate everything else if they are high histamine triggering or otherwise.  I have done a lot of research on this since I started out, and it seems to be like a domino effect.

The first domino is of course,stress, usually over many months or years which depletes the vitamin B complex, most especially B6 in our case, since it is the one that effects histamines directly.  B6 is the next domino that falls due to the stress.  The third domino, when histamines are too high and we know DAO is very low or not functioning to regulate the histamines back to normal range, seems to be the immune system, which is also directly effected by B6 depletion, which causes the nodules to form in my opinion, since immunodeficiency and B6 deficiency itself can cause the immune system to attack healthy cells in the body (according to one site I visited on vitamine B complex), thus we have the nodules themselves. Why our immune systems (PN) picks that particular form to attack us, I don't have the answer to yet.  I have noticed these little nodules act like tiny tumors in the skin.

I have come to the conclusion that nobody (doctor) could detect the true cause of this problem because it had these three main dominoes, resulting in the last one, where we scratch the itchy nodules and cause more histamines to the site coupled with more nodules, and a full outbreak of the symptoms. If we don't have the true cause, we can only treat symptoms endlessly with drugs, which to me can also exacerbate the symptoms, and you never truly recover.  Treating symptoms is not my goal.  I want a true cure.

There are more varied symptoms to histamine intolerance which are listed on the sites I visited, and there is a wide range of them, even including schitsophrenic like symptoms, autistic symptoms, ADS, depression, anxiety, panic attacks, to name some of the worst.  The stress factor does not need to be emotional stress, but could be physical, like having a lot of toxins in your environment on a daily basis, and anything else that causes the adrenal glands to produce excess adrenalin on a long term basis.  It could even be a natural process like menopause which sometimes effects the adrenal glands and causes hot flashes (which I believe might even be a high histamine release into the whole body at one time), or even causes anxiety or panic attacks.  I had all three at one point, all together.  This causes many people to lose much needed sleep, which makes all those matters worse.

A low histamine diet and B6 could go a huge long way to help these symptoms.  Also, you must not save your leftover food in the refrigerator, but must freeze them right away or don't save them because they start to produce histamines right away as soon as they start to decompose, which will happen even if refrigerated. All you have to do to know that is to leave meat in the refrigerator too long and see what you get.  Rotten meat. If you don't do that, you may not think the diet is helping you at all and will convince you it must be something else.  Fish is entirely off the list since if it is not immediately gutted, the histamines from the gut will contaminate the rest of the fish before it reaches shore.  Meat is to be treated with respect and frozen immediately after eating since it will deterioriate rapidly in the refrigerator.  Chicken is probably similar to fish, but I am only guessing since none of the sites I visited tell why chicken is on the no-list and not turkey.  It sounds depressing, but I believe once the B6 brings the DAO and immune system back to normal, if it does, and the stress factors are taken out of the picture, then I am hoping that normal foods can be reintroduced into the diet and life will be normal again with no skin problems. Even senile dementia patients have shown a low B6 level, possibly as a result of poor absorption of nutrients as we age, poor diet, etc.

I truly believe a lot of people go through symptoms caused by our unreliable foods these days, especially eating canned food which are going to be decomposing even in the can, poor storage and serving of meat, like rotisserie chicken that is cooked and left in the grocery store shelf for the day, pre-packaged meals that sit in the refrigerator section of the grocery store, deli meats that sit out all day, all of those and more can be unacceptable if you are under a lot of stress and use those foods to make up for a long day at work or shortcuts just to get by.  Children are especially effected and can cause them untold miseries that can lead to symptoms of attention deficit syndrome and other behavior problems which is not really their fault and for which they are drugged, punished, or worse. I have personal experience of that since a member of my husband's family had a toddler who was highly intolerant of salycylates (found in a lot of foods like histamines are) and the wife thought the child was mentally disabled until I could demonstrate to her that the child had the same food intolerance her husband and older son also had but had not broken the toddler out in a rash but had caused him to have behavioral problems instead.  The poor child would wake up screaming in the night, could not stand still, was highly aggressive, and only a week off the salycylates made him a normal child, almost a miracle to these people.

So, enough for now, and if you have questions or answers, I would be most happy to hear them.  One more thing.  I have been bathing or showering in water that is not very hot at all as it brings out the histamines.  Too much cold will do the same thing, so be careful of those temperatures in your shower.

All the best to you with your experiment, and don't forget, you don't have to make a paste of benedryl, you can apply the powder directly onto your moist skin.  Again I have to stress that if you leave out  any parts of the process, you will not get the same results and it would be only a temporary relief from your itching. The immune system must be rebuilt, or you may get new nodules showing up on your old scars, which is a habit the immune system has of protecting us.  Multiple sclerosis is an example of that special characteristic of an immune system gone awry when it attacks the cells of the spinal column and nervous system.. Lots of people with high histamines report tingling in their hands, feet and other joints.  I had that several years ago, so I don't want to progress it in any way.

Most good luck to you, and please let me hear your results as the more people who can verify this results, the more someone will be able to convince some doctor somewhere to write a paper and present it to some organization that can spread the word and relieve the rest of the people of this terrible syndrome.

Ava

Best from Ava

Here is the complete article he quotes from which provides information you may need:

So good to hear from you and that you may be willing to try for my attempted solution to this problem.  I have also had remissions and then again and again it comes back.  I was just reflecting tonight that some of my old 'healed' sites crop up again from time to time and are revisited by new nodules blooming forth.  And I too always thought, before really thinking it all the way through, that there was something foreign or alien, like some bugs or something, crawling around under my skin.  Well, there really is something called skin mites under everyone's skin, and they have recently discovered about a month ago that Rosacea is actually caused by, believe this or not, those same mites.  Seems that when they die, they come to the surface of the skin and as they die, they disgorge all their stored up poop, and that poop some people react to in the form of Rosacea, possibly because I don't remember the article when it came out on the NBC news website, either the histamines in their bodies bring forth the Rosacea rash, but I thing it sounds logical.  I don't think that's our exact problem, though, as the other symptoms of histamine intolerance coupled with these nodules, tied together as they are with the B6 deficiency to both immune system and high histamines, seem much more to be the case.

I would appreciate any feedback you may have with your progress, as I do wish to verify my own treatment regime as it relates to PN.  As I mentioned before, there are many other symptoms of histamine intolerance.  Mine are going away rapidly on the diet and vitamins.  I was reminded how really important sticking to the diet is since eating some chicken tonight from a takeaway with my husband.  Had to take a quarter of a Clarytin to counteract the effects of that.  I began to feel quite weak in my muscles shortly afterwards.  Such a small amount of antihistamine quickly alleviated it, however, so I was happy again.

One thing I have added to my skin regime since my last posting is a nice bit of coconut oil rubbed into my skin after the camomile tea (small amount of water to one tea bag to make it very concentrated) which makes for a mild antihistamine all over (one never knows where a new place is coming to the surface) followed by the coconut oil which has many healing properties and no additives that one cannot be sure of like the lotions and potions they sell for high prices on the market today.  Then on the open sores, I dab a little benedryl powder to keep them nice and dry and unitchy during the day. This seems to work quite well, and the old and dry patchy scars benefit tremendously from the coconut oil, and the rest of my skin does, too, since I was really worried about dry skin this winter.  Also, it soaks into the skin in about 15 minutes rather than sitting on the surface forever and getting on my clothing and leaves everything nice and soft. If you are not familiar with coconut oil, when you buy it, it's hard like cold butter, but when you warm some up in your hands, it melts right away at body temperature and gets soft at about 75 degrees. Most health food stores will have it at a reasonable price if you can't find it at your regular grocery.  I am trying to stay as natural and inexpensive as possible. As for the first, I don't trust mixtures nowadays, and as for the second, many people can't afford expensive medical treatments and also have to wait a long time to get them, first having to prove they need them by going through long laboratory testing.  I want results, and I want it quickly and cheaply.

I noticed though the years that as I have gotten older, the bouts of nodules stay longer and longer and are more severe, and my other high histamine/low immune system symptoms have become more and more prevalent.  Last winter I suffered with a terrible cough that seemed to go on and on for months no matter how well I treated it.  My thigh muscles became hard as rocks and no amount of massaging would unlock them.  My wheezing became more pronounced, and this summer I sometimes couldn't catch my breath after only a short walk.  No more wheezing, no more cramped muscles, and I can actually sleep though the night without pain in my legs or having to get up five times to go to the bathroom, which is another sign of high histamines.  My nose does not drip when I start to eat something, and I don't get flushed and all hot when I eat, either.  Both HH symptoms.  Those last two have gone on for years also, as has the muscle problem. 

So I am looking forward to the day all my sores have healed, my immune system wakes back and stops doing whacky things to my skin and goes about its proper business taking care of all the real things that might be detrimental to my health rather than thinking up things that cause me problems like this PN.  I will be missing chocolate, but since I never did drink but a little glass of wine once in a blue moon, I don't miss alcoholic beverages at all, which are on the no-no list for HH people.

Today I was looking up the histamine content of lentils because I know some beans are off the list (fortunately not lentils because they make such a good addition to soup), and I came across a very interesting cookbook called the 'Red Wine Headache Cookbook', which is a high histamine intolerance cookbook made just for us, as Red Wine is very high in histamines and causes many migraines.  I can't wait to buy it! I'm sure it will make my life easier in the kitchen.  Just before I got that cold that got me thinking about antihistamins and doing all this research, I happened to eat a small bag of M&M chocolate candies, which I never do and wouldn't have if I hadn't been caught on a long but ride and got hungry just before lunch.  That afternoon I got the worst headache I think I have ever had, all over my head, and it lasted for two days.  That's another thing that tipped me off about the histamines since chocolate is full of them.  I guess my time had come to get to the bottom of all this, and histamines tied everything together for me.

Good luck to you, Tilly, and do keep us posted on how things go for you.  Perhaps some of the things you have been tolerating since you didn't know why you had them will also clear up and you can report them to us also.  Thanks again for responding, and hopefully other people will step up and confirm this PN connection.  Maybe they will change the name from 'Prurigo Nodularis' to 'Prurigo Nodularis Urticaria Whacky Immune System Response' (urticaria being hives that don't go away, something you might want to research in your search for information).

Here's to regaining a normal body and many lovely swimming sessions with your boys!

Ava