The big reveal! Photos of my lame-o itchy rash

[Gabes-Apg]

bang for your buck
IMO the chinese medicine and acupuncture is going to treat the cause
antihistamines and creams are just abating the symptoms.

I would much rather spend my money treating the cause and attain long term elimination


thinking of you, and sending you lots of courage fill hugs for the treatment
xo


ps - keep in mind that when they make it angry and relase the toxins, it can irritate our guts- wear some super dooper liners just in case!

[Gloria]

Zizzle,

I take one Claritin Reditab in the morning with breakfast and one in the evening before I go to bed. It seems to distribute the antihistamine more evenly that way. I also spread cream on the itchy areas in the morning after I shower and again in the evening before bedtime. This routine has helped me quite a bit. I still have a few areas, but they no longer wake me up at night and the itching doesn't drive me crazy anymore.

I haven't eaten vinegar, including salad dressing, for a few years. It gave me mouth sores right away. My MC didn't react to my experiment of mustard with bratwurst, but I suspect it helped the mast cell degranulation.

I hope you find some relief soon.

Gloria

[Zizzle]

I thInk I've mentioned this before, but I never really researched it until now. Could my nickel allergy be to blame for all of this? Could I have Systemic Nickel Allergy Syndrome? Other than the presence of autoantibodies, my rash fits the description otherwise. Should I be seeing an allergist? Can my dermatologist diagnose it? I really think I'm on to something, and I wonder if it could affect others with MC. Here's just one article, but I've read others showing a relationship to intestinal inflammation, IBS, lactose intolerance, dishydrotic eczema, chronic fatigue, fibromyalgia, etc. wow.

http://jcadonline.com/dietary-nickel-as ... ermatitis/

[Zizzle]

Wow, I plan to find a doc to administer this test STAT!!

http://www.melisa.org/

And I'm ending my daily chocolate habit now. Not happy about it, but I'll do anything!!

[tex]

Why not?

What about the other nickel sources in your diet?

http://www.dailymail.co.uk/health/artic ... lergy.html

Tex

[Zizzle]

Yes, I'm trying to figure out that list of foods. The various lists I've read disagree on corn, broccoli, asparagus, greens, and many fruits. Chocolate, nuts and dried fruit are my biggest offenders. I rarely eat peanuts or legumes now, and very little canned food. I think I need to up my vitamin C. This would certainly explain why Claritin has been so miraculous for the MC. I note that nickel is primarily excreted through feces and sweat (not urine). This could explain my allergy to my own sweat!!

If you are following a low-nickel diet, you need to cut foods that have high nickel content from your diet. These include canned vegetables, canned beans, canned spaghetti and canned fruit. Also avoid nuts, dried fruit, cocoa and chocolate. You also need to restrict bran, sesame and sunflower seeds, pineapples, prunes, figs, dates, raspberries, peanuts, baking powder, almonds, shellfish, leeks, lettuce, lentils, spinach, soy protein powder, beans and peas.

ALLOWED FOODS
On a low nickel diet it's safer to eat broccoli, asparagus, corn, cucumbers, mushrooms, beets, cauliflower, potatoes, butter, yogurt, cheese, milk, eggs, poultry, meat, fish, coffee, rice, popcorn, macaroni and wheat flour, as well as baked goods that do not contain chocolate, almonds or other nuts, according to Penn State University in Hershey, Pennsylvania.

This diet would be death for vegans!!

[tex]

Nickel content would almost surely depend on the soils where a crop was grown, wouldn't it? That's probably why we see inconsistent recommendations (they're only valid for the particular lot of plants that the test results were based on). I.E. soils with a high nickel content would be likely to produce foods with a higher nickel content (because in general, plants grown in soils with a high content of various metals tend to absorb a higher level of those metals than would be the case in soils with low metal content. That's why arsenic is a problem in rice grown in certain soils, but not in others, for example.

Tex

[Gabes-Apg]

Another lightbulb moment….

Maybe take your chocolate and anything else that might be Nickel rich with you, maybe they can do muscle testing via acupuncture and confirm if they are the items causing you major inflammation…..

Hope you get answers and relief soon…..

[Zizzle]

Good idea. Thanks!!
Btw, no chocolate or nickel rich foods today and no noticeable urges to scratch...

The rash has climbed all the way up my back now in a triangle shape, with the top meeting my upper back rash. Ugh. I'm covered.

[Gloria]

Zizzle,

I'm sorry that you have to give up your chocolate, nuts and dried fruit. As you probably know, chocolate and dried fruit are both high in histamines and some types of nuts are also. Since you are also allergic to nickel, it's hard to say what's affecting the itching more, mast cells or the nickel intolerance, but I'm glad the itching is subsiding. It's a nightmare to deal with it.

It's interesting that you already determined that sesame seeds are bad for you, and there they are, on the list of foods to avoid for nickel allergies. I think you are on the right track.

Gloria

[Zizzle]

Saw my new Chinese doctor in my building today. She was not very talkative, and apparently didn't need much medical history. I gave her specifics, but she repeated it back in holistics terms -- basically it was something like: "it's autoimmune, it's attacking your intestines and your skin, your are hypersensitive, which means we need to balance your immune system." I said I was fearful of being prescribed western immunosuppressants, and she agreed, saying I would lose my ability to fight bacteria and viruses. She was clearly not a fan of the western approach to treating autoimmunity -- big + in my book!
She wanted to know if I had joint pain, and I said no, other than some nagging hip and back pains before the GF diet. Apparently her approach might have been different if I had joint pain involved in my autoimmunity. She was very supportive of the GF/DF/SF diet and agreed I should avoid nickel in food too, "for 40 days."

My BP and pulse were low as always, and when she examined me, she asked if I felt hot or cold most of the time. I said definitely COLD, but she said I had way too much internal "heat". My tongue exam also showed stagnation. So I guess they will try to drain this heat from me with acupuncture. When she was inserting the needles I could barely feel it, but I really winced in pain at the liver meridian (center of both feet) -- she found that telling (not sure what that points to?). I'll get herbs at next week's visit.

I'm feeling hopeful for once!!

[fatbuster205]

Ouch!
Big sympathy!!
Anne

[Zizzle]

Would you believe there is a blog written by someone suffering from systemic nickel allergy? I was surprised, but shouldn't be given how common the allergy is.
http://www.ihatenickel.com/home/2012/6/ ... rgies.html

It seems nickel is a Type IV delayed type hypersensitivity. Claritin shouldn't help it in theory, but it ABSOLUTELY has cleared up most of my MC symptoms. I know because I've been off it for 48 hours and its killing me. Raging D is back. Doesn't help that I got drunk at my 20th reunion Friday night. 4 vodka drinks! but still had semi-normans the next day.

Being off Claritin has not really affected the rash. It does itch a little more, but not terribly so.

I go to the Chinese doc in the AM and the dermatologist in the PM tomorrow, and plan to ask him for a battery of tests:
ESR/Sed rate, maybe a CRP (although I've never had an elevated CRP)
Liver enzymes
Serum Tryptase (for mast cells/possibility of cutaneous mastocytosis )
CPK and adolase (muscle enzymes to rule out muscle involvement in DM)
Jo-1 and Mi-2 antibodies (always checked for in DM -- helps with prognosis and risk for interstitial lung disease)
Any kind of test for internal nickel allergy -- I don't need skin confirmation.

I plan to ask whether the skin biopsy of a couple of months ago still exists and can be stained for mast cells.
I also plan to ask if he knows how to get a cream made with Cromolyn Sodium

Anything else I should ask/ ask for?

[Zizzle]

Saw the Chinese doc today and we had a good talk. She is not at all opposed to me taking prednisone. She thinks it will help get the skin attack and inflammation under control. She said I should accept the lowest possible dose (like no more than 20 mg/day). She said the acupuncture and herbs will control the side-effects, and will eventually help balance the immune system so I can taper down more quickly than the norm. She has another patient like me who only takes 1 mg of pred. every other day.
I started drinking Reishi today, 4 ounces twice a day. She'll add an herbal pill next week once I know I'm tolerating the reishi.

Can't wait to hear the dermatologist's reaction to this. Then again, maybe he won't have time to react in our 5 minute allowed visit.
If he's equally disappointing this time, I plan to give him a piece of my mind and ask for a referral to a derm who actually practices medicine, not drive-by cosmetology.

Thanks to a long-overdue talk with my husband, who has been conspicuously silent since this whole rash began (because I'm the medical decision-maker in our household), I've decided I'm no longer f'ing around with this. I agreed with him that I seem to manage my condition as a hobby, not as a serious, potentially life-threatening situation (I think he finally looked up Dermatomyositis ).

He said he is willing to budget thousands of dollars and travel for my care (he stumbled upon Dr. Mark Hyman's practice in MA). He recognized that there are success stories of people getting better on GF and other elimination diets, but that I've only gotten worse on my diet, so it's clear I have a more complicated case (and he wants the best experst on it). I offered to at least go to the Center at Johns Hopkins that works on DM if my docs continue to disappoint. He even mentioned me taking leave from my job to address my health. I feel loved.

Off to the derm now!

[tex]

If he's equally disappointing this time, I plan to give him a piece of my mind and ask for a referral to a derm who actually practices medicine, not drive-by cosmetology.

I certainly understand your frustration, but I'd be very surprised if you can get a valid recommendation for a decent doctor from one who is a candidate for a "piece of your mind". The chances are high that he probably doesn't even associate with qualified doctors, otherwise some of their skills would surely rub off on him, once in a while.

Good for your husband. I agree that it's time to devote some serious effort to solving this riddle.

Tex