What to do now?

[Guest guest]

Hi Aron, There are a few of us here who are trying to manage with a minimum

of medication...look up any posts from Elfstrom, he has had some

success with diet.

I have managed to get by with Bextra every day and a regimen of exercise that

was taught to me in 2 months worth of physical therapy. Now I do a

combination of pilates (strengthens abdominal muscles to relieve stress on

joints in the extremities, helps with Sacroiliitus) and water exercise (good

cardio and flexibility, no-impact). Some days its just not enough, but its

worth a try, I think.

Also, my biggest problem has been fatigue...I eat gluten-free, that has

helped my fatigue. Also lots of supplemental folic acid.

Hope that helps. But lots of people also do very well on medications.

You'll just have to experiement and see what works best for you.

[Guest guest]

In a message dated 5/18/2003 5:27:30 PM Eastern Daylight Time,

rachelviognier@... writes:

> . Now I do a

> combination of pilates (strengthens abdominal muscles to relieve stress on

> joints in the extremities

I just took a pilates class at the gym I joined and i can't believe how much

better it made me feel.

Also, I want to recommend something I just bought for the skin. I got it at

Trader Joe's and it is wonderful. It is peppermint rosemary herbal salt

scrub with green tea and sea salt. It came in a huge 23 ounce jar and it

only cost $6.00. It is a body scrub and it has salt, almond oil, safflower

oil and grapeseend oil and vitamin E. You rub it on and then when you wash

it off, your skin is super moisturized and smooth. If any of you have this

store near you, I would give it a try.

Janet

[Guest guest]

Janet,

Does the body scrub you got at Trader Joe's have a specific name? We have

one about 30 miles away and I may be going soon. Sounds like something worth

trying since my P is over 80% of my body and hard to moisturize all areas.

Lynda

[Guest guest]

I don't have pa, but have exzema and " adult acne " and some arthritic

signs but I am heavily into " Natural " relief and drugs only as a last

effort.

There are 5 forms of pa:

1. Asymmetric Polyarthritis - This form of psoriatic arthritis is

primarily characterized by severe swelling of the fingers and toes.

2. Symmetric Polyarthritis - This form of psoriatic arthritis closely

resembles rheumatoid arthritis. It is called symmetric polyarthritis

because it tends to affect four or more joints symmetrically on both

sides of the body simultaneously. The most commonly affected joints

are in the hands and feet. In addition to joints, this form of

psoriatic arthritis can affect an adult's skin and nails. The skin

typically displays dry, flaky, skin patches on the elbows, knees, and

shins. Other psoriasis prone areas include the hairline, belly button

and crack between the buttocks. Finally, the finger and/or toenails

of a person with this form of psoriatic arthritis may also become

affected. The fingernails and toenails for some patients may become

detached. For other persons, finger and/or toenails are marked with

little depressions or ridges.

3. Arthritis Mutilans - This form of psoriatic arthritis, is

primarily characterized by destruction of the person's bones,

particularly in the fingers. This destruction is usually painful,

permanently deforming and disabling.

4. DIP (The DIP stands for Distal Interphalangeal Joints) - A person

has pain and swelling of their last finger joints, closest to their

fingernails.

5. Ankylosing Spondyloarthropathy - This affects the spine,

especially the sacroiliac joints. It results in progressive fusion of

the vertebrae with an accompanying loss of movement. It is also

results in painful inflammation at the points where the ligaments and

tendons attach to the spine.

Since you've been diagnosed then I'm sure you've done extensive

research on the symptoms and possible treatments. The one that I

would give serious consideration to is attacking the condition

internally and externally for 30 days with an all natural solution

before resorting to manufactured treatments.

I would take 3 1000mg Pure Emu Oil Gel-Caps per day and apply Pure

emu Oil to affected areas with emphasis on joints. I feel strongly

that you will be able to retard at least the condition. You may want

to discuss this with your Dr.

Researchers are hard pressed to explain the benefits from the emu

oil. They know emu oil works for many different uses and are still

diligently investigating the results and effects of this unique oil.

Dr. Ghosh, Director of Research in Sydney's Royal North Shore

Hospital has confirmed that laboratory experiments consistently point

to emu oil's ability to treat inflammation and pain.

Another Australian, Dr. G. R. Hobday, conducted a ten year clinical

study that reported reduced pain, swelling and stiffness for patients

using emu oil, especially on hands, feet, knees and elbows. Thom B.

Leahey, D.O., while researching at the Arthritis Clinic in Ardmore,

OK. in Adult Rheumatology, stated, " The advent of this oil has simply

changed my practice. I've begun recommending the use of emu oil as

part of a regular treatment program for patients. I've observed some

very surprising results. "

I get my oil and gel-caps from http://GwendolynFarms.myRanch.com they

seem to have the best prices and are quick responding.

Good luck

Gerald

[Ed. Note: For information on " Alternative " treatments for Ps and PA from the

National Psoriasis Foundation, please see:

http://www.psoriasis.org/treatment/psoriasis/alternatives.php

-- Ron]

[Guest guest]

Hi Aron,

The good thing is that you're at an early stage and I now believe it's

possible to halt and completely reverse early inflammatory arthritis

through significant lifestyle and dietary changes. It takes a lot of

dedication and a lot of work, but in the end the result is health --

something we don't obtain from modern pharmaceutical approach.

Of course, the medications can really help, especially with allowing you to

maintain mobility enough to do exercise.

Here's my really short list of recommendations:

Exercise: Mix of some cardio to keep the blood moving, but mostly

weight-bearing (strength training). The book " Strong Women and Men Beat

Arthritis " is good if you can't afford a gym. I prefer going to the gym,

the social aspects with a couple of workout buddies keep me going. Besides,

my gym has a nice sauna!

If you want inspiration, check out my before and after picture on

http://elfstrom.com/workout/

Diet: There's a lot out there, but it pretty much boils down to the same.

Until you are have determined what foods you might be sensitive to, it's

best to completely eliminate a number of standard culprits that tend to

worsen arthritis in many people: All peppers (red, green, chili, and

black), many starchy vegetables (in particular potatoes), eggplant,

tomatoes. Eliminate beef, have some chicken but only if it's organic. Many

people have sensitives to dairy protein, specifically casein, so it's good

to get rid of that, too. If you want a good diet plan to start with, check

out http://mercola.com/nutritionplan/index.htm and read through it

thoroughly. Increase vegetables, start vegetable juicing (more on that on

mercola's site above), and reduce gluten-containing grains, especially

wheat. Eat more real foods, not things that come in packages. Stick to the

edges of the supermarket where the fresh food is. Basically the idea is to

think back to what someone would eat before all the modern conveniences,

and go from there.

Supplements: Zinc, especially if you have white flecks on your fingernails

- a sign of deficiency. A good multi-vitamin & multi-mineral is essential,

then add extra Vitamin C, Vitamin E with each meal.

The two single most important supplements for me have been Wobenzym (a

systemic oral enzyme) and 2 tablespoons of high-lignan flax seed oil daily

(In the winter months I substitute cod liver oil for the flax oil because

of the vitamin D)

Do check up on earlier messages from me here, feel free to ask more

questions here. (CC me on any message direct to my email address so that I

don't miss it!)

At 08:46 PM 5/16/2003 +0000, aron wrote:

>aside from the fact that i am a little down about getting pa at 22,

>and my only excersice is going to the bathroom and driving....i do

>not want to enter into a life of medicine just yet. i have heard that

>alternative medicine at my age could help. now, i know most of the

>ppl here are not into that, i would like to know if anybody knows

>anything about it. i would rather not start medicine's right away, if

>there is something else that could help.

>also, what, if any excersising could i do?and what's the deal with

>tomatoes....good or bad?in short..i need to know what or where to go

>now, and anything else that comes with the " you've got pa " gift

>package.

[Guest guest]

In a message dated 5/19/2003 7:53:48 PM Eastern Daylight Time,

Cyndi2pak@... writes:

> Does the body scrub you got at Trader Joe's have a specific name?

Yes, the name on the jar is Sunshine Spa Peppermint Rosemary Herbal Salt

scrub.

Janet

[Guest guest]

,

I am 26, got PA when I was 20-21 so I know EXACTLY what you are going through.

It takes alot getting used too. My whole life has changed. I was worried about

taking so many meds at such a young age (especially since I am a woman and would

like to have kids someday) but, you really don't have a choice. You have to

take them so you don't get worse...it's a small price to pay. As far as

alternatives go...I guess it all depends on the severity of your disease. I

already have permanent damage and I wouldn't risk getting more. My rheumy does

stress the importance of an exercise program but right now I am flaring so

horribly that I can't start. Good luck and try not to let it get you too down.

Remember to have fun and don't alienate yourself from your friends. Things will

get better.

take care,

[Guest guest]

Thanks Janet!

[Guest guest]

My son was diagnosed just this week, and we are still kind of

overwhelmed with everything. One thing we really need advice on is how

to talk to our 8 yo about his diagnosis. Obviously he knows that he

has been seeing a doc, that they are doing tests at school, etc. We

have talked to him at least about all of that, and he seems to

understand that he is going through this to help him with his

learning/school work and to help him with his classmates. How do we

address the actual diagnosis though, if at all?

[Guest guest]

Hi Karin,

I bought my son a book called, "All Cats Have Aspergers Syndrome." It has pictures of kittens and under each picture an explaination of what Aspergers is in child's terms. It speaks to the Autistic child, not about them. He loves the book and took it with him to school every single day. He was very relieved when we told him what the diagnosis was.

http://specialchildren.about.com/od/booksonaspergersyndrome/gr/allcatshaveAS.htm

Wallbank - Wittmayer

DOK Grace Chapter

"Prayer without work is empty words,service without prayer is labor lost."

( ) What to do now?

My son was diagnosed just this week, and we are still kind ofoverwhelmed with everything. One thing we really need advice on is howto talk to our 8 yo about his diagnosis. Obviously he knows that hehas been seeing a doc, that they are doing tests at school, etc. Wehave talked to him at least about all of that, and he seems tounderstand that he is going through this to help him with hislearning/school work and to help him with his classmates. How do weaddress the actual diagnosis though, if at all?

[Guest guest]

My son was older when he was diagnosed, so that made things a little

different. He was relieved, too, to just know. Like he said, " I always

knew I was different, I just didn't know why. " Of course, I'm finding

that he has plenty of company and there are more like him than we

thought at the beginning. Anyway, when he asked me to explain it to

him, I told him that it was neurological thing with the brain that

made him really smart but not always able to handle loud noises,

etc...(the things that bother him), and that makes it hard sometimes

for him to know how to understand other people. I let his questions

lead me as to what he wanted and needed answered, and we have

revisited the topic off and on since then. You know your son, I would

go with your gut and let that lead you in how you handle this. Keep us

posted. Asperger's has its positive side, too. I have a feeling some

of our most creative people have it. Lori

>

> My son was diagnosed just this week, and we are still kind of

> overwhelmed with everything. One thing we really need advice on is how

> to talk to our 8 yo about his diagnosis. Obviously he knows that he

> has been seeing a doc, that they are doing tests at school, etc. We

> have talked to him at least about all of that, and he seems to

> understand that he is going through this to help him with his

> learning/school work and to help him with his classmates. How do we

> address the actual diagnosis though, if at all?

>

[Guest guest]

I've been wanting to get that book. I actually do have a cat with

autism/Asperger's and ironcially, my son is her favorite person in the

whole world. She's a tortie and sometimes they have neurological

differences that give them the same symptoms of autism. We adore her,

but are aware that she gets overstimulated easily. She also doesn't

like loud noises and will bite you if you yell. I definitely need to

get a few copies of this book and maybe donate them to our libraries. Lori

>

> Hi Karin,

> I bought my son a book called, " All Cats Have Aspergers Syndrome. "

It has pictures of kittens and under each picture an explaination of

what Aspergers is in child's terms. It speaks to the Autistic child,

not about them. He loves the book and took it with him to school every

single day. He was very relieved when we told him what the diagnosis was.

>

http://specialchildren.about.com/od/booksonaspergersyndrome/gr/allcatshaveAS.htm

>

>

> Wallbank - Wittmayer

> DOK Grace Chapter

> " Prayer without work is empty words,

> service without prayer is labor lost. "

>

>

[Guest guest]

When my son was younger, like yours, I found that I had to come up with

alternate words

rather quickly when teachers used negative phrases like " special ed " and

" disabled " and

" handicapped " . It was bad enough that my son was quickly losing self esteem by

noticing

that his hand writing was sloppy, his reading slower, etc.

I would speak up to the idiot teachers in a conference and very firmly correct

them (in

front of him) by saying: " Warren is NOT disabled or handicapped, he merely

learns in a

manner different than schools teach. He is a hands on visual learner. MOST

kids would

remember better if they are taught by doing and seeing rather than reading and

memorizing. " I would reinforce this at home by pointing out the things he WAS

exceptionally good at so that he could remember those during the so called

draught times

of public school squashing of our kids self image.

Try to read him age level books that show success by other " different " people,

such as,

Albert Einstein. Reinforce that everyone has different gifts and visual learners

have done

much to contribute to everyday life: Bill Gates and the affordable home PC, for

example.

He was not like other students. Inventors are especially high in the number of

persons

who are " different " from the " norm " . And remember him that it is only a small

group of

stuffed shirts who define what the norm is every few years. ; )

Basically, stand up with pride against the idiots you will meet that will hurt

his feelings and

encourage him and praise his accomplishments. True praise for the hard stuff

when

earned and encourage him with You are so smart enough to do this when he is

struggling.

Dee ><))))*>

>

> My son was diagnosed just this week, and we are still kind of

> overwhelmed with everything. One thing we really need advice on is how

> to talk to our 8 yo about his diagnosis. Obviously he knows that he

> has been seeing a doc, that they are doing tests at school, etc. We

> have talked to him at least about all of that, and he seems to

> understand that he is going through this to help him with his

> learning/school work and to help him with his classmates. How do we

> address the actual diagnosis though, if at all?

>

[Guest guest]

Did you know there is a reason the handwriting is sloppy and reading slower? When we FINALLY had my now 14 year old tested SPECIFICALLY FOR LEARNING disabilities (yes, if you don't go to the right testing, they are not necessarily testing) NOT THROUGH SCHOOL but privately like a University CLINIC, etc.------------there are reasons behind it. Our son is sloppy but, his O.T. found that he had a huge vision issue that required over a year of vision therapy (V.T.) to correct these issues; that was part of reading and sloppy. However, he also has extremely slow processing issues which is a learning disability; part of the ADHD diagnosis too but it really does take him forever to process, which angers him then, too; if you are not done by blah, blah, blah, you cannot go out for recess, etc.-------we were the parents that put an end to that---always recess---he needs it---he cannot do the work at YOUR PACE, you WILL shorten his amounts and you WILL (SCHOOL) provide him with one-on-one to do it, period. And, that is what we did------that is very important------loosing recess is punishing him for something he cannot stop, fix, help, or even change----it is a disability / a reason he cannot go fast, fast, fast, and time and more learning and knowing it will NEVER fix it, it IS the WAY HE IS, period.

Secondly, our son has dyslexia due to reading comprehension issues. Dyslexia is a huge all encompassing title for reading problems, people, did you know that? We did not; we thought it meant you flip, invert, etc your letters----------it is NOT; we got him a reading tutor that worked one-on-one with him for four months, 2 hours a week for reading and brought him from a 4th to 8th grade reading level in that short period of time, as my son has no intellectual problems, he is smarter than a whip but not on pace, lost without one-on-one, etc. So, THAT is the fast, reasonably priced miracle 'cure' for it! ONE-on-ONE---at $50 a week, it was cheap for us-----he would NEVER have accomplished this with us----but April, she is a teacher and he will listen to her, just not us, so it was great. And, he HAS stayed there. We DO read aloud at home, read books with him, and make him read to us, even at 14 1/2 now, it is a requirement / his 'job' to get his allowance!! So, he will do it; hates the book we are reading, doesn't want to hear it, but 'sneaks' it and reads without me knowing------obviously NOT GOOD AT IT!!!!!

As for school, they do not know, do not do testing there, do it privately but your son sounds like my eldest aspie. PS He also has MEMORY PROBLEMS which means he really cannot remember; teach it all today, and it never gets easier, tomorrow, he knows everything you told him; it is a memory and processing problem together; however, his memory is a problem permanently; we can do things to 'help' but it is life-long per the docs and something we should prepare ourselves for; he does NOT remember to take his meds if we don't make him; he may take his pills for the organizer but forget to inject his lantus for diabetes, even though they all sit together; this probably won't change; if we do not tELL HIM TO GO NOW, SUPERVISE, AND WATCH---HE NEVER DOES THEM INDEPENDENTLY. He then gets ANGRY at himself, puts self down, etc., as he wants to remember but cannot. So, I have learned that he IS this way, this is HIM, and I will NOT stand back and let others abuse him, act like he is manipulative, doing it on purpose, etc.; he is NOT; he wants to be normal and cannot be.

YOU SHOULD NOT LET IT HAPPEN TO YOUR CHILD EITHER, and once you have the diagnosis and know what it is / what learning disabilities, you can MAKE the school meet the needs in an IEP, spend thousands, or get P.O.'ed and home school when they don't after thousands of dollars fighting. But, don't stand still and let them continue; fight for that which is right......

Ruthie Dolezal

From: pjdxxxwa@...Date: Mon, 26 May 2008 03:52:11 +0000Subject: ( ) Re: What to do now?

When my son was younger, like yours, I found that I had to come up with alternate wordsrather quickly when teachers used negative phrases like "special ed" and "disabled" and "handicapped". It was bad enough that my son was quickly losing self esteem by noticing that his hand writing was sloppy, his reading slower, etc. I would speak up to the idiot teachers in a conference and very firmly correct them (in front of him) by saying: " Warren is NOT disabled or handicapped, he merely learns in amanner different than schools teach. He is a hands on visual learner. MOST kids would remember better if they are taught by doing and seeing rather than reading and memorizing." I would reinforce this at home by pointing out the things he WAS exceptionally good at so that he could remember those during the so called draught times of public school squashing of our kids self image. Try to read him age level books that show success by other "different" people, such as, Albert Einstein. Reinforce that everyone has different gifts and visual learners have done much to contribute to everyday life: Bill Gates and the affordable home PC, for example. He was not like other students. Inventors are especially high in the number of persons who are "different" from the "norm". And remember him that it is only a small group ofstuffed shirts who define what the norm is every few years. ; ) Basically, stand up with pride against the idiots you will meet that will hurt his feelings and encourage him and praise his accomplishments. True praise for the hard stuff when earned and encourage him with You are so smart enough to do this when he is struggling. Dee ><))))*>>> My son was diagnosed just this week, and we are still kind of> overwhelmed with everything. One thing we really need advice on is how> to talk to our 8 yo about his diagnosis. Obviously he knows that he> has been seeing a doc, that they are doing tests at school, etc. We> have talked to him at least about all of that, and he seems to> understand that he is going through this to help him with his> learning/school work and to help him with his classmates. How do we> address the actual diagnosis though, if at all?>

[Guest guest]

Drugs To Avoid When Taking Low Dose Naltrexone

http://www.webspawner.com/users/avoidthesedrugsonldn/index.html

>

> Hello. I began LDN in late October. I am slowly getting better. My energy

and stamina are improved. I'm working on strength and balance with the help of

a physical therapist. I'm following the diet rules and many vitamin

supplements. I'm still wondering if I should consider any of the drugs

currently being tested and aproved. Is LDN compatible with drugs like

Framprdine or Zanapax?

>

> If LDN is not a stand-alone therapy, then WHAT is compatible with it?

>