Grover's disease

[Keith Johnson]

Hey Grover guys and gals, month 6 suffer'r and no relief insight, recently my dr hit me with the blue ray, this worked really well for about a week. It dried up my skin and I didn't scratch the entire time. However, it musta really ****** ( Ed Bot! ) of my grovers, because it came back really bad after that week. I think had my insurance covered the treatment and I did it once a week it would keep the grovers at bay, I'm no dr but I did stay at a holiday inn express last nite..ok I kid, but seriously you all might mention it to your doctors...best of luck.

Keith
Louisville, KY     

[Elisa]

Please forgive my ignorance but what is "blue ray"?

Elisa

[newgrovers56]

Hello fellow Grovers sufferers,
I just found this site and it has been very helpful and so I thought I would add my story.  Grovers started this summer for me (09) at age 56.  At first it was just a few random red spots that itched on my left rib cage which I thought was just an infected pimple or two (unusual for my skin) and so I tried polysporin which didn't work, and then some over the counter cortisone which helped some, but they still didn't go away.  The biopsy confirmed Grovers and for some reason after that they "flared" and spread all over my back, rear, thighs, and a few on my arms.  I would sometimes get a pink tinge on my skin in places, almost like sunburn, and then the spots would appear and of course the whole area was incredibly itchy, which we all know is just awful. 

For some background I have had multiple pollen allergies since I was 20 years old and taken antigen injections for 25 years.  Several years ago I had become photo sensitive to sunlight would get dsyhidrotic eczema on my hands but this had been in remission for the past few years.  In fact my antigen mix was changed 5 years ago and my photo sensitivity disappeared which the doctors could not explain.  My antigen shots were stopped a year ago and my allergies have been virtually nonexistent, however when the grovers appeared the eczema roared back on both my hands (burning and itching like crazy).  High potency cortisone lotions have helped some and I did get some temporary relief from Sarna lotion and Eucerin anti-itch lotion.  My dermatologist has no idea what to make of the ezcema/sunlight connection.  Here is the really unusual part:

My sister got Grover's 3 years ago at age 45 and still has minor outbreaks, and my elderly father started Grover's 2 years ago.  The odds must be very high that there is genetic component to Grover's.  All three of us also have allergies although I am the only one who was serious enough to get antigen shots. 

After some trial and error using lotions like Sarna and Eucerin anti-itch, and various strengths of cortisone, I have found that keeping my skin cool and dry, short tepid showers with no soap except where absolutely necessary, never itching the spots, and taking hydroxine pills at night before bed, to be the best routine.  Lotions give short term relief, but I think I have less overall itching if I keep my skin cool dry, and stay out of the sun. 

My family must have some kind of marker in our genes for Grover's.  Maybe there will be a treatment or cure someday.  My family would be happy to give some blood if there is a doctor out there willing to study it.   
David

[Keith Johnson]

Please forgive my ignorance but what is "blue ray"?

Elisa

"Blue Ray" Remind me never to post on here while I'm at my business again!!! It was actually called Blue Light and I'm sure there is some other Med term for it, sorta looked like a Horseshoe tanning bed that was upright.. Sorry about that...

[Keith Johnson]

Hello fellow Grovers sufferers,
I just found this site and it has been very helpful and so I thought I would add my story.  Grovers started this summer for me (09) at age 56.  At first it was just a few random red spots that itched on my left rib cage which I thought was just an infected pimple or two (unusual for my skin) and so I tried polysporin which didn't work, and then some over the counter cortisone which helped some, but they still didn't go away.  The biopsy confirmed Grovers and for some reason after that they "flared" and spread all over my back, rear, thighs, and a few on my arms.  I would sometimes get a pink tinge on my skin in places, almost like sunburn, and then the spots would appear and of course the whole area was incredibly itchy, which we all know is just awful. 

For some background I have had multiple pollen allergies since I was 20 years old and taken antigen injections for 25 years.  Several years ago I had become photo sensitive to sunlight would get dsyhidrotic eczema on my hands but this had been in remission for the past few years.  In fact my antigen mix was changed 5 years ago and my photo sensitivity disappeared which the doctors could not explain.  My antigen shots were stopped a year ago and my allergies have been virtually nonexistent, however when the grovers appeared the eczema roared back on both my hands (burning and itching like crazy).  High potency cortisone lotions have helped some and I did get some temporary relief from Sarna lotion and Eucerin anti-itch lotion.  My dermatologist has no idea what to make of the ezcema/sunlight connection.  Here is the really unusual part:

My sister got Grover's 3 years ago at age 45 and still has minor outbreaks, and my elderly father started Grover's 2 years ago.  The odds must be very high that there is genetic component to Grover's.  All three of us also have allergies although I am the only one who was serious enough to get antigen shots. 

After some trial and error using lotions like Sarna and Eucerin anti-itch, and various strengths of cortisone, I have found that keeping my skin cool and dry, short tepid showers with no soap except where absolutely necessary, never itching the spots, and taking hydroxine pills at night before bed, to be the best routine.  Lotions give short term relief, but I think I have less overall itching if I keep my skin cool dry, and stay out of the sun. 

My family must have some kind of marker in our genes for Grover's.  Maybe there will be a treatment or cure someday.  My family would be happy to give some blood if there is a doctor out there willing to study it.   

David,

6 Kids in my family and I'm the only one that hit the Grovers lotto..Not sure if genetics that has anything to do with it or not. And how do you not itch? I could really live with this a lot easier if I could avoid that, but there are times I just wanna peal my skin off. It says to avoid hot showers, sometimes that is the highlight of my day...Too me it's pretty depressing, all the things they say to do for it makes no difference either way if you ask me. I really feel for the people that have had this for years, I hope mine decides to leave before my one year anniversary next june.

[jd1]

newgrovers56, that is interesting about your family.  But what if, instead of a genetic component, it is simply an environmental issue?  What if you all three have had so much mercury toxicity that you are all stuck with this disease.  You've grown up in the same places.....eaten the same food for much of your lives....had the same mercury laden vaccines....had the same dentist fill your cavities with mercury....smoked cigarettes.....used the same products that used to be laced with mercury (everything from contact lense solution to hemorrhoid medicine)....

you get the idea...

Welcome to the forum.  I hope you get well soon.

[Geraldine]

Does anyone ever get over this "transient" disease?! As far as I can determine, the only thing transient is the severity of the pain and discomfort each hour and day.
And is anyone else taking Hydroxyzine? How does it do you? I was on Nortriptylln prescribed to help with the Grovers. Took it for about 5 weeks and thought it gave me major constipation...now THAT is something one needs along with Grover's!
Also, I am the only one anywhere in my very large family with this disease...but I have been 3000 miles away from them all for 50 years!
Geraldine

[Elisa]

Hi Geraldine,

I'm sorry to read about the tough time you are having with Grover's.  You ask if it is really "transient".  I will be coming up to the one year mark soon and I can now actually count the number of Grover's spots I have....it IS going away, with no treatment - other than flowers cream.

Having said that, I hope it's not going to return with vengeance!

Take care,
Elisa

PS Welcome NewGrover's 56.  I agree with JD1, I would look more up the toxin path for answers to your family Grover's although it is unusual that three of you in the same family should have it.

PPS How's it going Sarri?

[Sarri]

Hey Elisa....and welcome to you "newbies"

I am getting over being sick ;( And, as you can imagine, the stress, chills and fever that go along with said sickness only work to enhance the spots of Grovers. Sigh! My doctor thought I had a bacterial imbalance - prob caused from all of the meds / vitamins / detox methods I've been trying for the past, almost 9 months to "cure" this disease, ugh! Anyways, things are quickly improving, since I am starting to feel better. I still have itchy days, but that's even doing better as well. It IS going away - or fading atleast - either way, I am thankful. I just have to be careful of certain fabrics, the way I wash things, certain lotions / chemicals, etc. I am jumping on the bandwagon that it's an environmental thing - although, the idea of it being genetic in ones family is intriguing - but, I am more in-line with all of you being exposed to something, and some of you have stronger immune systems than others. I have a horrible immune system. Grrrr! Anyways, that's enough from me for now. I wish all of you the BEST day!

Sarri

[bookbear]

Geraldine, you asked if this disease is really 'transient'.  For about 85% of patients with Grover's, it IS.  It resolves on it's own in anywhere from 1 to 2 years.  Sadly, for about 15% of patients, it never goes away.  I am in my 17th year of this.  Fortunately, I do not have the relentless burning itch that many cope with.  For me, the itch is there, but at a lower level than many describe.  It has slowly spread over the years, and varies in intensity, but never clears up or goes away.  (These figures come from an article from the Journal of Investigative Dermatology that one derm shared with me years ago.  He said that if the Grover's persists longer than three years, you are one of the 'lucky' 15%, and will have it for life.)

There really isn't much in the literature on Grover's, mostly because there is very little research done on the disease, given it's transient nature (for most), and the fact that it isn't life-threatening.  There aren't any national associations raising money and awareness, and no aging comedians running telethons to raise research money.

Good luck, hang in there, and I hope you are one of the 'lucky' 85%!

[Keith Johnson]

I think what needs to happen is for some celebrity or congress mans wife (liberal) to come down with this crap..not saying I wish this on anyone...    

[Geraldine]

Thank you, Bookbear. I'm afraid I'm rapidly approaching the 3 years...Now I am depressed! My condition is severe enough that it restricts most activities and totally prohibits others. I can't even make a day trip. I have to stay with 3 hours of hot packs, Sarna, etc. And the condition gets even worse as the day wears on, so evening events such as art openings, concerts, etc are usually out of the question.
I already suspected what you are saying about the level of research importance! And now that I understand that 85% of the victims totally recover...well, a cure "ain't looking good."
Best wishes for as much comfort as possible!
Geraldine

[newgrovers56]

To respond to the question about mercury, my sister and I have both had our mercury levels tested, and mine is in the mid-range of normal and hers is slightly higher, but still what the doctors consider a normal range.  My father has not has his tested yet.  It seems like mercury is not a factor for us.  My sister and I have lived in different cities for more than 30 years and away from our father for the same period, so we don't have any current environmental factors that make any sense.   

I kind of suspect that Grover's might not be so much about a weak immune system but perhaps the opposite.  I think it might have something to do with an over stimulated immune system.  For me something caused my skin to go ballastic recently (with grover's) and this is after a lifetime pollen and even some food allergies.  In fact grover's looks and feels to me more like an allergic reaction with all the itching.  It almost behaves like hives, except it doesn't look like hives.  I think our problems point to something in our immune system, perhaps triggered by some environmental influence, or maybe a virus, bacterial or fungal trigger, but something in combination with our immune system sets this thing off.  Since my family has 3 with grovers we might have a gene that would be easier to identify.  I know that is how other genes have been found that have implications in other diseases.  I would love to find a research doctor somewhere who would like to take this on.  If Grovers is not transient for some it would obviously be well worth the effort.

[newgrovers56]

oh..and to answer the question about hydroxine, it is an older type anti-histimine that makes most people drowsy.  The newer ones are non-sedating, but this helps calm you down as well as calm the itch.   It also has some anti-anxiety properties, but unlike other drugs like valium, it is not addictive and can be taken in fairly large doses safely for long periods according to my doctor.  I take 25 mg before bed and I can take more if needed.  It really helps keep me from waking up at all times of the night and wanting to rip the skin off my body with the itching.  Since I started taking it I feel like my spots are calming down slightly.  My doctor also says a good nights sleep might be very useful in dealing with the Grovers, and I have to agree.  The hydroxine helps me to sleep and a good nights sleep seems to really help with anything your body is fighting.

[Geraldine]

Well, question...how many of us are thyroid patients? I had my thyroid removed 30 years ago due to Hashimoto's Thyroiditis ...an autoimmune disease...are we on to something here?
Geraldine

[Seattlejeff]

Hi Jeff,

Thank you for your last posting about the allergy-bloodtest.  The one you did in May sounds just like Imucor 400 which I did last week and am thus still awaiting the results (around November 8th I'm told).
It's exactly as you describe, a simple blood test which is then sent to the laboratory (in Luxembourg for us here in France) and the results should be straightforward to understand.

I am more and more convinced that I have toxic poisoning and as I get older I am beginning to be allergic to quite a lot of foods.

I will let you know once I get my results and meanwhile will check out the website of Signet you suggest.
Take care,
Elisa
P.S.  I'm scared to say this but my Grover's seems to be clearing up all by itself (no treatment - so this is before I start the new diet following the results).  It's just fading away....However, my fingers are a mess.

Hi Elisa,

Anxious to hear about your food and chemical sensitivity also.  As I mentioned I had another rash, prior to Grover's which started in January 2009.  The food and chemical sensitivity test was to help address that.  It did help for awhile, and I can say, knock on wood, I see some clearing of the Grover's.  Who knows what it is attributed to. Maybe the diet.

As you say maybe it does just clear up on it's own.  I am concerned about your fingers though.  There must be some treatment which might help for the inflammation of your joints.   A friend's mom has arthritis in her hands and legs.  She has what I think are called renacade (not sure of the spelling) treatments.  They seem to relieve her pain.  It is administered by IV or I think maybe orally. You'd need to confer with your doctor.

I think I told you I was also diagnosed with osteo-arthritis in my fingers by my hand surgeon.  However it seems to be at bay now with no treatment.  Interestingly my Grover's appeared a few weeks after. 

At any rate, maybe your food allergy test will lead you towards a solution for the arthritis as well.  I can say one thing, I am eating very healthy now......no more fast food. 

Please let me know when you get your results and we can compare.

Take care of yourself Elisa,

Best always,

Jeff

[Geraldine]

Anyone had any experience with Betamethasone Dipropionate...a topical steroid cream. Applied sparingly (mixed with like amount of Sarna to dilute it) and applied to affected area 2x day for two weeks. ONLY two weeks at a time, and then must go off for two weeks. Guess taking a steroid by skin is as dangerous as taking it by mouth.
This treatment eliminated almost all "spots" and lessened burning and pain somewhat.

For the first two years, I had few to NO eruptions, but the burning and pain were there, and getting worse. It was almost all under the skin. I'd go to my primary doc, and ask if I was crazy!? the first Grover's article I googled up once I actually had a real diagnosis...A NAME for what I had...SAID "Sometimes the features of Grover's are found in people who do not itch OR HAVE A CONSPICUOUS RASH..."
GERALDINE

[jd1]

All,

I am the first person to have posted on this thread, and at that time I believe that I had had this disease nonstop for 10 years.  My skin's been healthy for 3 years.  I have continued to monitor the thread so that I could encourage people, make them aware of Dr Dantzig's research, and direct them to the detailed discussion, since it would be easy for a newcomer to post without realizing that many of us have been cured.  The last time I emailed Dr Dantzig, he said he has successfully treated over 100 people.

The blood test result that you get is not indicative of the Hg residing in your tissues and causing the disease.  There's information on the unreliability of the measurement on the web, in Andy Cutler's book, and I believe in the 2001 position paper by Autism Research Institute.  When I started, my measured Hg levels were less than 4.  Mepen was less than 6.  Both are considered "normal".  There's a whole issue regarding how what's "normal" was determined.  It's just a starting point.  The best way to test whether Hg is causing the disease is to try the treatment for a few weeks.  I saw a change within 1 week.  Mepen took a little longer.  I believe the most recent poster is Lisa from NoCal, who said that she saw great improvement within 6 weeks.

Anyway, yesterday I saw references to Dr Dantzig's treatment on 2 other websites (I was looking up something on another health issue).  Therefore, I am going to assume that the word is out.  There are clues available to future sufferers.  I am taking myself out of this discussion.  It is hard for me to witness what I suspect is unnecessary suffering.  The other people that have tried his treatment and used to help with this have all left; I'm gone too.

I will check back every few months because I will think of you all and hope that you are cured.  Best wishes to all.

[Elisa]

Hi Everyone and particularly Hi Jeff and Sarri,

I got my results back from Luxembourg and the food allergy test.  What a shock!  I am allergic to 62 foods etc......including gluten, nearly all the cereals and farines, eggs, milk, and loads of other things like nuts etc, not forgetting vanilla.

I don't know if you were as surprised as I am Jeff when you got your results back, but this is going to completely change my life: My eating choice is drastically cut.  This will be a nightmare going to a restaurant in Paris.

I am seeing the toxin specialist next week so I'll be interested to hear what he has to say about all this but he does seem to be on the right track.

I started my new diet this morning and I already feel starving even though I am entitled to white rice.....
But the good news is I'm not allergic to tanin so I can still enjoy a good Bordeaux and I only have a slight intolerance to cafe which is good news too.

Let's hope this will put my fingers back in order!
Take care,
Elisa,

PS You were right JD1 about Grovers disappearing but it's like having the Sword of Damocles over ones head !

[newgrovers56]

Hi Elisa,
I personally think grovers might have something to do with allergies or at the very least allergies can make the grovers worse.  Have you ever tried hydroxyzine?  It sure seems to be helping me.  Ever since I started taking it each night the outbreak really slowed, and now it seems to be actually going down in places.  I try very hard to avoid my allergy foods but it can be a challenge when you go out, or over to friends.  I usually pre-eat a big bowl of white rice so I am not tempted.  Cream of rice cereal also makes a safe breakfast.  It's a tough routine but I have a hunch you might get some good results.  Try to find a Chinese restaurant in Paris.  They always have rice
Goodluck!  
David