Re: I could use some help

[Guest guest]

Long term disability is hard to get because insurance companies turn your

first application down automatically just to see if you are serious. Many

people find it helpful to hire a lawyer. According to the law in Canada,

after 2 years you can choose to be retrained for another job or to remain on

disability. Many people hire a lawyer who specialized in disability

insurance applications to handle their application for long-term. According

to a lady I spoke to at the arthritis society just recently, hiring a lawyer

greatly increases your chances of getting approval for long-term. If you like

your job and still want to be a chef, perhaps you could ask your employer for

shorter hours. I find it hard myself to apply for disability, maybe because

I am stubborn (some people would say there is no " maybe " about it, so I hear

what you are saying). But I do find it very difficult to work. No one can

know how hard it is to work when you are in constant pain. My physical

difficulty now is that I find it difficult to type (I am a writer). I used

to be able to type as I thought the words, now I have to be slow and

deliberate or else my hands start to shake and it becomes impossible to type

at all. When it first started to happen, I wept in frustration. Lastly, the

Arthritis Society in Canada now gives free physiotherapy when you are

referred to them by a Doctor. I am taking it now, it is pretty good.

Nothing fancy, but good exercises and stretches that help hurting joints and

muscles. Good luck, hope this helps, Matt - another Canadian.

[Guest guest]

Dsknaus,

For help start with the fantastic factual information that G. just sent

out. Second, I don't believe your pain is being properly treated and I am

wondering how much fact finding they have done for your conditions. What

blood tests have you had? Is the doctor you see a rheumatologist?

I agree with , the majority of supplements are unproven, unreliable and

rely on second hand stories of it working. However that being said there are

some herbs and minerals that have some proven benefits and if it helps you

continue, if the dose is safe, remember ephedra. There are some proven

supplements, Glucosamine and Chondroiton, possibly St. Wort for mild to

moderate depression, Flax Seed, Fish Oil Tablets... etc. The arthritis

foundation has a book found at most libraries on this which may be useful.

Perhaps I'm biased toward the Pharma industry because I have seen it first

hand, but their research on drugs, the phases of trials the drugs must go

through, the millions spent studying the compounds by brilliant scientists,

make them the obvious first choice. Sometimes the newer drugs will help you,

sometimes the generics will do just fine.

I have been able to get a large portion of my life back by doing the

following, joint injection under fluoroscopy, 2 Ultracet Tabs a Day, 1

Arthrotec, a ketoprofin gel from a compounding pharmacy (which is an NSAID

gel commonly used in Europe and has good trial data results), physical

therapy every few weeks, stretching, exercise, and occasionally accupuncture

with electrical stimulation. There is some decent research out there on

accupuncture, and I also heard a well respected Duke pain management

physician discuss it positively and he's doing further research on it. I did

do one 3 month course of tetracycline which I didn't feel great when I was

on, but that may have helped. Also, I kept a mental food journal and believe

that red meat may cause further inflammation. I am now going to write down

for a month what foods seem to help or hurt. For instance grape juice is

excellent for you and does have some anti inflammatory properties.

Dsknaus, don't give up, you just need the right mix of meds and lifestyle

adjustments.

Dave in NC

[Guest guest]

In a message dated 4/1/2003 10:33:47 PM Pacific Standard Time,

dsknaus@... writes:

> I can live with some pain but many days it's hard and I can't get

> by without my percocet.

>

>

My daughter has several doctors, as one doctor was not enough for her. She

had to come home from school, in the tenth grade because she was so ill, she

could not attend school any longer. She was home for nine months. In those

months, she slowly began to make a turn around and improve. We visited LOTS

of doctors and found some answers and help. She did schoolwork at home, so

she kept at grade level. But it was hard.

She never did return to the full public school setting. She instead

attended college classes and getting credit for high school graduation. The

hours she had to put in at that point were much less than attending high

school.

Her doctors currently include Neurologist for pain management,

Endocrinologist for her thyroid condition,that was discovered after her

Rheumatologist did Tons of bloodwork trying to figure out her fatigue, She

has a Rheumatologist, but has not seen him in over a year, a peditrician who

she sees...very rarely and will keep her on until she graduates from college.

Adrienne's most help on pain management comes from her Neurologist.

Adrienne takes Celebrex and Prozac for pain. Name brands as the generic

prozac does not work for pain for her. She also takes Cyproheptadine,

Citamel, Synthroid. Trazadone and Immetrex are used as needed.

Adrienne is now 19. She is at the University of Washington and... for those

who recall when we first joined the list, and how much she was dancing then

she was unable to continue... well.. it has been three years now... but she

is taking three dance classes at the Univeristy now. She will be dancing 9

hours a week.

What I am trying to say, is with the right combination of doctors and

medications, it can work.

I remember when ADrienne first started to get sick. A gentleman wrote to

us, he had been in a wheelchair with this arthritis and he was then getting

ready to run a marathon. He said he still had his wheelchair...but... he

was much better now. That gentleman was an inspiration! He gave Adrienne

tremendous hope that she too could get through what she was living and live a

better life in a while.

There are so many avenues to check out, and consider treating. For Adrienne,

treating what is causing the pain, and helping her body deal with the pain,

has allowed her to function pretty near normal.

Adrienne takes the prozac, not for depression, but because the seratonin in

her body... doesn't buffer the pain signals well enough... with prozac it

helps act as a cushion so her over active pain receptors... don't get to be

quite so over active. (ok, those of you on the list, in the medical

profession, maybe you can give a more clear definition of what is going

on?... this is kind of a moms type explaination.

When Adrienne was in the midst of her worst flare, she did modify her eating.

Eliminating wheat, dairy, various plants of the nightshade family. It was

challenging, but she found some relief by modifing her diet. She eats pretty

much what ever she wants now. If she feels like her body is trying flare,

she does become more aware of her diet and for example,doesn't go out for a

pizza ( wheat + dairy + tomatoes, all things she works to eliminate when not

feeling well)

I wish you the best. I cannot suggest carreers as Adrienne is sort of in the

same boat. She is considering nursing... she does also like theater and

dance. No telling what she will be when she finally graduates.

Good luck! And do feel free to write in with any questions you have. This

list is great at helping each other.

K

Adrienne's Mom

Adrienne- undiff Spondy, Fibromyalgia, Hypo Thyroid, Chronic Fatigue, Great

kid! And got a 3.4 GPA at UW last quarter!

[Guest guest]

I work as an accountant for the United States government. It's partly

sedentary which is helpful. And, I need the security and health insurance

of a government job.

Disease-modifying anti-rheumatic drugs (DMARDs) have been essential to

enable me to continue to work full time. I used to take sulfasalazine which

worked very well for a number of years. I started Vioxx in 1999 which still

helps a lot. I have been on prednisone for about 6 months, which has

enabled me to continue working. When I go on a site visit, that involves a

lot of walking, I take more prednisone so I can get through it. Since

sulfasalazine no longer works for me, and I can't tolerate methotrexate, I

just started on Enbrel, one of the newest, most effective drugs. I am

hopeful it will enable me to get off prednisone.

So, the key to me being able to work are the type of job, the type of

employer, and more importantly, having a top-notch doctor (chief of

rheumatology at a major teaching hospital), and taking medications that

attempt to treat the disease rather than just the symptoms.

Hope this helps.

Janet in SF

Reactive Arthritis since 1973; diagnosed 1997

[Guest guest]

Hi ,

Go here:

http://www.cappskids.org/PlagioInsuranceHelp.htm

and scroll down to: Cosmetic, No Functional Impairment or Not

Medically Necessary.

Also check out sample letter 3.

I hope this helps.

> My insurance company denied our claim so we're trying to get Early

> Intervention to pay for it which they have done for some. I really

> need some documents stating that this is not just a cosemetic

> condition. Any information would be greatly appreciated. Thank

> you...we're running out of time as 's almost 10 months old.

>

> mary and

[Guest guest]

gave you a great link. Also, the FDA will write you a letter

for your appeal stating that the DOCBand is not

investigational/experimental. Angie, Jenna's mom had an email addy

and I think Rhiannon, Bryce's mom has it as well. Good Luck and keep

us posted on how it is going!

Dustie

> My insurance company denied our claim so we're trying to get Early

> Intervention to pay for it which they have done for some. I really

> need some documents stating that this is not just a cosemetic

> condition. Any information would be greatly appreciated. Thank

> you...we're running out of time as 's almost 10 months old.

>

> mary and

[Guest guest]

Thank you all so much for sending me inspiration as well as info on diet and

testimonials about what is working and what isn't. I have been a good soldier

for the last 15 years. That's because i had a resection done. i was laying in

the bed with tubes everywhere after they had to pull all my organs out becuase i

was perferated and scabby stuff was covering everything. so i had to come up

with a new plan and i really did. i was on 3mg of enticort, got accupuncture

three to five times a year, used darvicett every so often, stayed away from

fatty foods especially after they pulled my gall bladder, got rest, quit when i

needed to quit. Other than a few minor flares, life was pretty normal for me.

Then a year ago i got diagnosed with two strictures and some active ulcers. I

was told to go on Humira. I said no. My mom had just died of cancer and anything

that had cancer in it scared the crap out of me. I was told either resection or

Humira. So i went looking for resection options. I figured hey, i made it

fifteen years, i can go another fifteen and maybe something new will be out by

then. Met DR. Michelassi who invented side by side stricturplasty. He was in

NYC. So instead, I'll go to Cleveland Clinic they have to be just as good right?

Well they said maybe yes maybe no and for two months kind of kept saying the

same thing so i finally got hot and said, " did he look at my report? what chance

do i have to get strictureplasty. And his nurse got mad back and said, " he

looked at your report theyre too big! " Well how long were you going to keep this

a secret? So off to NYC to meet Dr. Michelassi. What a wonderful man. He said i

wasn't a candidate at this time and sent me to a specialist across the street.

She said oh you have to go on Humira. Like that's all any of em can say. Full

bowel obstruction? humira,ulcer? Humira, hangnail? humira. no matter the

severity, Humira. Then i learned about LDN and a Dr. in rochester, NY that got

me started along with a very strict gluten free anti-inflamatory diet with

suppliments. That was three weeks ago and still wondering what's going to happen

at the end. I guess we are the only ones who understand the mental side that

goes along with something like this that just seems to keep going. wouldn't it

be cool to go a day and not wonder what you were doing or eating was going to

affect your condition. Oh boo hoo. that's where i'm at and thank you all for

chiming in and giving me support and direction. i will keep posting and

updating. ps. one thing that i think you all should try is slippery elm. it's

the only suppliment that i have ever taken that has had immediate results. Think

of noxzema for the insides. love to all, john

[Guest guest]

Keep on keeping on , you will get there and LDN will help you, thanks for the update and another would be good when you have time....

Celia

[low dose naltrexone] re: i could use some help

[Guest guest]

Dr McCandless, seldom is LDN stand-alone treatment

http://ldn.proboards.com/index.cgi?board=links & action=display & thread=1483

--

Other reasons of negative responses to LDN by Dr. Jaquelyn McCandless

http://ldn.proboards.com/index.cgi?action=display & board=forum & thread=448 & page=1#\

6347

--

From Dr. McCandless:

As I have said many times before on this board, anytime someone has a negative

reaction to LDN the first question I would ask is, " What is the diet like? " If I

had a disease such as ALS or MS, I would be more than willing to see if my

dietary exogenous opioids could be causing the negative reaction to a drug that

is helping most of these people get off all their other drugs without

progression of their disease. The reason this is a worthwhile trial is that this

intolerance is affecting their general health and immunity in a negative way.

Unfortunately, sometimes it takes up to 6 months to get gluten out of the

system, so it is not so easy to test

Wonderful info Dr McCandless wrote

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=448

>

> Thank you all so much for sending me inspiration as well as info on diet and

testimonials about what is working and what isn't. I have been a good soldier

for the last 15 years. That's because i had a resection done. i was laying in

the bed with tubes everywhere after they had to pull all my organs out becuase i

was perferated and scabby stuff was covering everything. so i had to come up

with a new plan and i really did. i was on 3mg of enticort, got accupuncture

three to five times a year, used darvicett every so often, stayed away from

fatty foods especially after they pulled my gall bladder, got rest, quit when i

needed to quit. Other than a few minor flares, life was pretty normal for me.

Then a year ago i got diagnosed with two strictures and some active ulcers. I

was told to go on Humira. I said no. My mom had just died of cancer and anything

that had cancer in it scared the crap out of me. I was told either resection or

Humira. So i went looking for resection options. I figured hey, i made it

fifteen years, i can go another fifteen and maybe something new will be out by

then. Met DR. Michelassi who invented side by side stricturplasty. He was in

NYC. So instead, I'll go to Cleveland Clinic they have to be just as good right?

Well they said maybe yes maybe no and for two months kind of kept saying the

same thing so i finally got hot and said, " did he look at my report? what chance

do i have to get strictureplasty. And his nurse got mad back and said, " he

looked at your report theyre too big! " Well how long were you going to keep this

a secret? So off to NYC to meet Dr. Michelassi. What a wonderful man. He said i

wasn't a candidate at this time and sent me to a specialist across the street.

She said oh you have to go on Humira. Like that's all any of em can say. Full

bowel obstruction? humira,ulcer? Humira, hangnail? humira. no matter the

severity, Humira. Then i learned about LDN and a Dr. in rochester, NY that got

me started along with a very strict gluten free anti-inflamatory diet with

suppliments. That was three weeks ago and still wondering what's going to happen

at the end. I guess we are the only ones who understand the mental side that

goes along with something like this that just seems to keep going. wouldn't it

be cool to go a day and not wonder what you were doing or eating was going to

affect your condition. Oh boo hoo. that's where i'm at and thank you all for

chiming in and giving me support and direction. i will keep posting and

updating. ps. one thing that i think you all should try is slippery elm. it's

the only suppliment that i have ever taken that has had immediate results. Think

of noxzema for the insides. love to all, john

>