Re: Possible PG food triggers and physical exertion

[Guest guest]

Hi Tina,We have a poll feature on the group site:http://health.groups.yahoo.com/group/erythema_nodosum_Group/pollsbut it is geared to EN members. We cannot set up a separate poll for PG members as the Group is not set up to do it by Yahoo.We can, however, add to our poll questions and specify that the question is for PG members ONLY. Why don't you look at the polls and write up the questions that you would like other PG members to address. We have many fewer PG than EN members, however. About half of the time PG is due to

autoimmunity and the rest are idiopathic. So members should include the AI disorder they have concurrent with PG or even EN for that matter. The stress you mention certainly goes along with my proposed research study on the EN Website:http://www.geocities.com/erythema_nodosum/rebecca/index.htmThat's an older photo. I'm attaching one taken this past Thanksgiving Day.Love, You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's

find a cure for Erythema Nodosum!

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

tina,

i have done exhaustive research since my severe problem with pg. my

underlying cause is crohns disease. in some cases there is no link

to an underlying cause, most often there is....best estimates are

50/50. there are about 20 associated diseases that are underlying.

pg is not " triggered " , as en is. there is a very distinctive

difference. even tho we do not know the mechanism behind pg, there

is a lot we do know. there has been evidence, nor have i ever been

able to find a, more or less, " natural " cause for pg, i.e., blood

types, physical exersion, diet. i would love to hear that or to say

that changing some " thing " that we, as pg'ers do, will lessen or cure

pg. don't believe it is so. tina, i truely believe, we, as human

beings, do not, ourselves, cause this nor do i believe anything we do

from a diet/physical care, etc. standpoint will influence it. i know

there is a whole nother school of thought out there, but until one

has had pg to the point of being hospitalized and going on

demand/drip morphine due to the pain, i don't believe their testimony.

i understand your situation, with no health insurance. pretty hard

to go get the treatment you really need. so very expensive. right

now i am without work and i am paying my bc/bs cobra premiums out of

pocket. not sure how long i will be able to do that. so, believe

me, when it comes to struggling and health insurance and jobs, i

don't take this lightly.

yes, these ulcers will come and go. i challenge anyone to force pg

to come and go with trying a particular " natural " treatment or a

particular diet change. i have only found pg to relate to one thing,

almost directly without question.....inflammation. you will find as

ulcers become more active or new one's occur, your SED rate will be

elevated. sed rate is determined by a blood test.

i mentioned there is a lot we do know. for example, the first line

medical treatments all will address reducing inflammation and what

they call " modulating " the immune system. this is done via

medications such as prednosone, immuran, methotrexate and a number of

others. it is also accomplished by using " biologics " . this is

another form of immune system modulation, often

called " immunomodulators " . i use remicade. there are at least 3

other biologics out there for pg in use. we know, for in FACT, that

these treatments work. these treatments are very far removed from

things such as diet, excercise, slippery elm ... blah, blah, blah.

yes, i am bias, of course. i have lived it and came out the other

end. i have yet to hear of anyone cured of pg with " natural "

remedies. of the claims i do hear, i question they had pg to begin

with because these particular claims were absent of biopsies, which

pretty much proof that it is the condition and not something else.

there are a number of conditions that look exactly like pg, but their

underlying mechanism is something completely different from pg.

even without health insurance, you can get medical treatment. you

need to see a doc then between you and him request of the drug

manufacturer drug assistance. i have explored this option because, i

myself, may end up down this road, hoping not, but when one sits here

typing like i am now, knowing full well that when tomorrow comes and

i have no job to go to, one better start making plans.

i am not out to bust any bubbles or dampen anyone's, or your spirits

regarding this condition. the thing that i have come to learn is

that pg is NOT well managed by the patient themselves. says nothing

less of you or me, it is just the nature of this thing called pg.

this is one tough mother fxxxxxg disease. i had a very hard road to

travel because my pg was very resistant to typical outpatient

treatments.

and oh, btw, i am a healthy 57 year old....other than my crohns

disease. i am slightly overweight, but not severly....lol...trying

to lose 10 or 20 more pounds ... i excercise regularily, eat

healthy and my bp runs just under, what is considered, normal. i got

a remicade infusion a week ago and my starting bp was 117/69. for

the line of meds i am on, this is amasing because it has not always

been that way. i do what i can to counteract the side effects of the

medications when it comes to diet and excercise and doing

healthy " natural " things and it seems to be working. is this enough

to keep my pg away? don't think so.......i know better than to risk

that.

well, okay, my 2 cents. take and use what you can from this.

wishing you the best!

jeff,

cd,

pg

>

> I don't know how I would ever be able to feel confident about

> recognizing triggers. These lesions always seem to go away

eventually.

> Everything about them is so erratic. My best hunch is that they are

> food or drug reactions. My immune system has always been very

reactive.

> Poison ivy you would not believe. Severe hay fever as a child, and

> asthma now. Chemical and food sensitivities.

>

> I think it worthwhile to explore the blood type diet

recommendations

> (Dr. J. D'Adamo's research and books). I think an excellent

> question in the poll would be asking blood types, and whether or

not

> people have food sensitivities; whether their reactions are in

> digestive track, skin, or lungs and sinusitis.

>

> I believe type O is the most common. And they very frequently have

> trouble with glutens and bovine dairy. Given the average American

diet,

> this means that the largest proportion of the population is eating

a

> diet extremely high in things they can't tolerate. Looking back at

my

> life, I believe that the severity of the reactions progresses over

> time. I guess I was really wearing my immune system down over the

years

> because of my eating habits.

>

> I can tell you that I had periods where I can definitely relate my

> symptom flareups with dietary indiscretions. I got severe eczema

(which

> I have only gotten a few times in my 58 years, with only very small

> areas) when I was eating a daily breakfast of bagels and cream

cheese.

> Bagels are particularly high in gluten. Most recently, I had my

most

> severe outbreak of PG after a big diet change. Because of D'Adamo's

> book, I had gone years without drinking caffinated or decaffinated

> beverages. This summer, I forgot and started drinking a

decaffinated

> iced tea every day. Also, I have avoided peanuts, cashews and

> pistachios for years. This summer, I forgot and had a brief period

of

> binging on cashews. These nuts have an inflamitory precursor,

according

> to my naturopath. For most of my life, practically lived on pasta

(or

> bread, crackers), cheese and nuts because I have a very high

metabolism

> and I am hungary all the time. Now I eat rice almost exclusively as

a

> grain for pasta and crackers. I Only eat goat and sheep dairy. And

i

> eat almonds as my nut of choice. I have had REMARKABLE improvements

in

> my mood swings, joint pain, sinus headaches and no episodes of

eczema.

> Prior to these diet changes, my sinus headaches crippled me for

many

> days out of every month since I was in sixth grade.

>

> The other factor that I would be curious about comparing with other

PG

> sufferers is physical exertion. I am fairly hyperactive and get a

great

> deal of exercise by choice. I suspect that the PG outbursts might

be

> related to especially high periods of exercise. this is nearly

> impossible to determine since the higher periods of exertion

coincide

> directly with the highest periods of stress. Emotional, financial,

and

> physical stress has been a huge factor in my life in recent years,

> coinciding with the onset of PG. All my jobs have intentionally

> involved lots of exercise (hospice caregiving, massage therapist,

> landscaper, housecleaning, housepainter). Add to this that I was an

> avid hiker and horseback rider (and cross country skiing if we ever

got

> snow) until the PG knocked me out of those passions. On top of

that, I

> have not had stable living situation since my divorce twelve years

ago.

> I have moved a phenomenal amount of times since then (sometimes a

few

> times in a given year), which involves a great deal of lifting

since I

> move myself with minimal help (and STRESS of moving deadlines when

I

> had no place to go).

>

> Hope this can be helpful to trigger recognition of similarities.

The

> best thing we could do to help each other is figure out what causes

> outbreaks of EN/PG so we can avoid them and relieve them.

>

> Happy New Year to you all. I am so grateful to have found

you!!!!!!!!!!

>

> Tina

>