Anybody else with psoriatic arthritis?

[lazarus]

It's a fairly rare condition, apparently. Only a small percentage of people with psoriasis get it.

Very, very painful. Doesn't help that I have fibromyalgia on top of it, either. Treatment is a bear, as we have to figure out which disorder the pain is causing.

One thing my doctor likes is that I refuse to take pain meds, even over the counter stuff. Well, except sometimes at night, when I need to sleep, I'll take a bunch of tylenol or something.

That way, I'm not at risk of addiction, and we can tell if the pain is receding due to meds instead of dope.

[ayeshahaqqiqa]

1. You might wish to try entertropic therapy

doesn't involve drugs, but the flow of energy. I've had it used to get rid of pain, and it works! Here's a url to a page that explains more:

http://futurevisionsfoundation.org/fv5.html

[lazarus]

3. okay, except

I prefer treatments that aren't quite so "alternative".

[ayeshahaqqiqa]

4. would it help if you knew

that the person doing this is a board certified MD who has been in practice for decades? She practices integrative medicine, and uses these methods herself-sort of woke up to the possibilities after having cancer.

[lazarus]

7. Upon further reading

on that site, here's what I see:

"He reports that toward the end of his research, as the grant money was running out, he was beginning to explore the piezoelectric potential of the connective tissues, including the connective tissue lining of the nerves. This, he began to believe, was a very important part of the "healing system." "

IOW, the research hasn't shown anything yet.

"What some of us are postulating is that this electrical potential is a key part of health. Apparently, optimal health occurs only when this electricity is actually flowing through the tissues. Several great minds, including Dr. Valerie Hunt, and Dr. William Tiller, are beginning to explain health in terms of this flow."

It's a postulate. And I question a site that has to call its own researchers 'great minds', to be honest.

"Presumably working in an atmosphere containing a high level of negative ions would also enhance the therapy, although we have not specifically explored that issue. "

So much more research needs to be done.

They use Dr William Tiller, who's a wacko associated with talking to the dead and pyramid power.

Lastly, when I see something like, "we are in sacred territory here, and should treat this part of our healing system accordingly," I get very, very leery. Real doctors don't use "sacred territory" in their research.

[ayeshahaqqiqa]

16. You are right

since you don't believe in this stuff, it wouldn't work for you. All I know is that it has worked for me and for many others.

[lazarus]

17. So it requires belief to work?

That's not medicine at all.

[Ninga]

2. My husband has Psoriatic Arthritis and has what I would

characterize as manageable. He has it on the knuckle's of his hands and on his knees, and elbows too. ]

His mother had Psoriatic Arthritis.

Believe it or not, Glousamine and Chrondrotian(sp?)has made a difference.
It took just about 7 or 8 months before he noticed some relief from taking it.

Our youngest granddaughter was diagnosed with Juvenile Arthritis at the age of 2, and on the family history that the doctor took he indicated that she most likely had it passed on to her by her grandfather. It was the doctor's conclusion based on the fact that no other member of the family had any Arthritis of any kind other than her grandfather and great-grandmother.

[HysteryDiagnosis]

5. Probiotics n/t

[HysteryDiagnosis]

6. Let me expand on that.

Really and truly... your best bet is to learn what is at the three following sites....

www.FisherInstitute.org

www.CureAnyDisease.com

www.Glycoscience.com

Failing that.... learn about probiotics, intestinal balance, proper digestion and immunomodulating supplements. I am NOT kidding.

http://www.symbiotics.com/research/research_studies.htm

Chronic Inflammatory Disease Study

Dr. Paul A. Goldberg, M.P.H., D.C., of The Goldberg Clinic in Marietta, Georgia, has completed a small case study focusing on the therapeutic effects of colostrum in adult patients who have chronic inflammatory disease. Chronic inflammatory disease is characterized by the following disorders; rheumatoid disease, inflammatory bowel syndromes such as Crohn’s disease or ulcerative colitis, and chronic fatigue syndrome. Dr. Goldberg focused on four adult patients who have a chronic inflammatory disease state that showed little change under standard methods of care and who experienced significant discomfort due to the condition. Specifically, the study included subjects who have inflammatory bowel, rheumatoid arthritis or psoriatic arthritis. Subjects with chronic inflammatory conditions were monitored by comparing ESR analysis (erythrocyte sedimentation rates).

http://www.1to1vitamins.com/questions/2004/16919.html
Question:
dear doc, i wrote you back about a week and havent had a reply yet. i told you that I have psoriatic arthritis and seen all your products for arthritis. I am currently taking methotrexate and was wondering if there are any supplements that can ease my hand stiffness, hand burning and just to improve my all over well being. thank you in advance. I need to know what to take and how much, etc. You have some products that I see look promising. thanks, doc.

Dr. Cinque's Answer:
Well, you could try our Rheumanex, which is intended for rheumatoid arthritis. However, psoriatic arthritis is a similar auto-immune condition, so it just might help. I really don't have enough experience with PA to advise about it. But feel free to write our medical director, Dr. Ward Dean at [e-mail]. I will give you the link: Rheumanex

[lazarus]

8. Okay

When I have time, I promise I will research this completely and answer you. (I've got jury duty starting tomorrow, and must clean up some for the week.)

Just to let you know, I may be a skeptic, but that means I have to do the research. Thank you for the links, I WILL follow up on this.

[HysteryDiagnosis]

9. Thank you for the links, I WILL follow up on this.

If you follow up on the first three links... there is virtually NO WAY that you won't achieve relief.

A good book for you would be How to Cure and Prevent Any Disease....

Another good book would be Digestive Wellness... take it from me, there is more to an illness or a biological condition than the symptoms that they produce.

http://www.amazon.com/gp/reader/0879839848/ref=sib_dp_pt/102-8618749-6564912#reader-link
Book Info
Author is in private practice, Kauai, HI. Discusses gastrointestinal and related disorders caused by faulty digestion and seemingly unrelated illnesses, including arthritis, chronic fatigue syndrome, and eczema. Contains advice for healthy eating and living. For consumers. Previous edition: c1996. For consumers. Softcover. DNLM: Digestion--Popular works.

Product Description:

There is currently an epidemic of digestive illness in this country, an epidemic that can be traced to the foods we eat and the way we live. One-third to one-half of all adults suffer from some sort of digestive problem, and faulty digestion is directly responsible for a vast array of other ailments--everything from bad breath, ulcers, heartburn, and constipation to colitis, diverticulitis, and irritable bowel syndrome. Disorders that are caused indirectly by this problem include arthritis, chronic fatigue syndrome, fibromyalgia, and migraine headaches. In this well-researched, comprehensive book, noted nutritionist Elizabeth Lipski helps readers understand the complex interrelationships of the digestive process.

[Metrix]

10. Note that these sites are sponsored by an MLM

called Mannatech with (charitably) a very questionable financial history. They claim they have a patent pending product line. The patent was applied for years ago and never granted. Their products actually contain off-the-shelf ingredients: arabinogalactan (larch extract), gums, rice starch, glucosamine, aloe extract -- nothing revolutionary. Fisher and Glycoscience are Mannatech; don't know about the third.

[HysteryDiagnosis]

12. Patent Information

http://home.gci.net/~designed/first.htm
FIRST PATENT ON GLYCONUTRITIONALS IS
GRANTED BY THE REPUBLIC OF SOUTH AFRICA

http://www.findarticles.com/p/articles/mi_m0EIN/is_2003_May_20/ai_102045668
"Having a patent in Hong Kong provides Mannatech with exclusive rights to certain compositions that other companies, including drug companies, cannot make, use or sell in Hong Kong," explained Terry Persinger, President and Chief Operating Officer.

In addition to Hong Kong, Mannatech has secured patents in France, Germany, Ireland, Italy, Liechtenstein, Spain, Switzerland, the United Kingdom, New Zealand, Australia, Singapore, Mexico and the Republic of South Africa. In 1998, the Republic of South Africa became the first country to issue a patent to Mannatech.

http://home.gci.net/~designed/scrip.htm

Scrip's new report, Nutraceuticals and Functional Foods - A new market for the pharmaceutical industry describes how pharmaceutical companies are making inroads into the nutraceuticals industry through diversification and strategic alliances. The report also profiles how some types of nutraceuticals are threatening the market share of prescription drugs. The ways in which pharmaceutical companies are responding to this threat are discussed.

http://home.gci.net/~designed/ambrotos.htm
Several years later, Dr. Rolands wife had been diagnosed with lupus, the disease was rapidly threatening her life. In God's plan - that's who Dr. Rolands and his lovely wife credit - one of the scientists in Dr. Rolands section alerted him to a new patent submission by Dr. MacAnally. Rolands was extremely excited about what he found in the documentation and research submitted about a new product called Ambrotose. He immediately called Mannatech and requested that his wife be allowed to use the product before it was officially released. Dr. MacAnally agreed.

This was in 1996. Now Dr. Rolands has moved to a new section of the patent office and officially has no conflict-of-interest so he can tell his story. Through tears of joy and thanksgiving, I personnally heard Dr. Rolands and his wife share the miraculous story of how Ambrotose had restored his wife's health. The Rolands are now Mannatech associates and are committed to share this wonderful gift with all who will listen.

[Metrix]

13. If you are pushing MLM, please disclose such

Terry Persinger insider transactions:
http://biz.yahoo.com/t/83/916.html

There is no U.S. patent. Mannatech applied for a composition of matter patent on Ambrotose, and it was not granted. They do not have a product with a novel use, and therefore it is not patentable. It contains arabinogalactan (another company has the patent on the extraction process), gums, rice starch, aloe extract (another company has the patent on the extraction process), and glucosamine.

This company and its products are all smoke and mirrors.

[HysteryDiagnosis]

14. What have I pushed? I have attempted to help someone find an

answer to a health concern. I gave them several options, you stated there were no patents... I merely corrected your mis-representation of the truth.

I have advertised nothing, sold nothing, asked for email, hawked, snake oiled, parleyed, anyone or anything.

If you have issue with a particular company, especially if you represent the "traditional medical paradigm" then take it up with them.

Leave people who are genuinely trying to help someone find an answer alone. If you have an axe to grind go grind it somewhere else.

No I am not an MLMer, nor do I intend to be one... however I am a person who understands basic biology and what is hot in both the nutrition field as well as the pharmaceutical world. CAM's (cellular adhesion molecules) are where it is at, they are the stuff that better health is made of.

http://www.bmjbookshop.com/shop/product_display.asp?productid=0824798244&productname=Adhesion+Molecules+in+Health+and+Disease
Adhesion Molecules in Health and Disease
Issekutz, Thomas B.; Paul, Leendert C.
£130.00
0824798244 Add to Basket

Publisher: Marcel Dekker Inc
Pub. Date: 16/05/97
Availability: In print
Editor: Paul, Leendert C.; Issekutz, Thomas B.
Binding: hardback
Description:
Provides an overview of the structure, transcription regulation and binding characteristics of cellular adhesion molecules and their ligands in the maintenance of function, immunological reactions and inflammatory processes with organ systems. The text examines the role of adhesion molecules in biological processes such as morphogenesis, blood coagulation, tumour metastasis, bone tissue remodelling and transplant rejection.

[DemBones DemBones]

20. What's MLM?

:shrug:

[Princess Turandot]

23. MLM is 'multi-level marketing'..

Amway is a good example of it, where people try to find other people besides themselves to sell Amway products, which gives them a 'cut' of the other people's sales money.

[Metrix]

11. Oh, no

I checked the third. Ray Gebauer is a crook and a fraud.

[grilled onions]

15. got it in high school

I had a GP at the time and it was "over his head". A year of a little manangement and he dropped me from meds. Bad mistake that I didn't realize for years. Much deformity occured in those years. It took fifteen years and a lot of pain before I was forced to get a rheumatologist who "confirmed" I had PA. It has a strange quirk--if the scales get worse the arthritis flares up. If the arthritis flares up the scales do to. I am hanging in there. Never did see a remission except for a brief period when I was on gold salts. Hang in there. They are doing more research into the causes and ways to ease its pisn and destruction every day.

[lazarus]

18. Thanks for chiming in

I've also got fibromyalgia, which complicates things enormously.

The worst part is that I look fine. Until you see me try to move. And some days, I literally can't get off the couch without yelling in pain.

I refuse to take painkillers. The dosages required to ease the pain cause massive problems with my mind and body.

[DemBones DemBones]

19. "Oh, but you look fine!" or "You look good, you must

be feeling better."

I am still trying to figure out a polite way to say, "Yes, damn it, I'm feeling well enough today to get dressed and out of the house. Notice that it's rare for me to be that well more than once or twice a month and please realize that I am NOT "better" other than temporarily."

:argh:

[lazarus]

21. I got that this week at jury duty

"You're so sharp and intelligent, and your hands look like they work just fine, you couldn't get a job of some sort?"

I finished it off by telling them the government saw fit to give me full disability, and I took two years to even apply, because I hate being disabled, and wish I could go back to working 80 hours a week.

[DemBones DemBones]

22. They need to see us when we can barely move. But of course no one

outside our respective families usually sees us when we're in bad shape, so all the others just don't get it.

[Sugarbleus]

25. I hear you loud and clear DB..

My girlfriend (that I just refered to in this thread) was agonizing about even asking for disability help...why? Because she was doing quite well in the workforce as were all of her friends. Most all of them middle to upper middle class and rather conservative in their estimation of "people who ask for help".

My girlfriend looks Great! She kept herself fit all of her life. She ran marathons and dressed well. She was a social butterfly always having parties/soires at her house. A really fun and decent person BUT seduced by that element of our society that looks down on people who use state moneies.

She was afraid to let any of her other friends know that she was applying for help because she couldn't stand the pain anymore. She didn't WANT to stop working, she just couldn't take morphine and climb outta bed to dress and DRIVE to a job where she had to sit or walk or stand all day. She worked all her life; she and her husband did fairly well. They have a nice home etc.

I, on the other hand, am the black sheep of the "fold". My life didn't exactly go with the flow of the "American Dream". I'm all too familiar with the "system". It was I she called upon to help her fill out her forms for SSDI. She begged me not to tell anyone she was doing this because they would say: She looked just fine and why was she going on the "dole"?!? I told her I wouldn't say anything and also told her to tell them to go FTS (LOL)

Like soooooooo many individuals, her afflictions can't be SEEN by the casual glance (unless you catch her when her hands are swollen and red)...she looks swell on the outside. She hides her ailments fairly well; although I know her for 36 years now and I can tell she is walking bent over more these days.

This world is so judgmental isn't it--it's like we're all still in kindergarten or something with all the nitpicking of each other? My skin is getting thicker with all this judgemental crap. I don't let it bother me so much anymore. It takes a person actually having gone through something themselves to finally stop poking their noses into other's business....

Take care, SB :hi:

[Sugarbleus]

24. My girlfriend has PA....but she also has OA and RA...

She doesn't have scales, just teeny red dots. The other conditions she suffers with do cause her so much pain that she's had five surgeries.

My girlfriend is on Morphine. It's all she can do now. Her hands are swollen with the RA and regular Arthritis, her knees back feet and hips are all inflamed with Osteo Arthritis and/or RA. Each area has seen it's share of surgery.

She is so seriously affected that narcotic pain relievers are the only way she can function. It works for her. She is very careful to take only what is prescribed and is monitored closely by her MD. She is nearly 60 and just now applying for SSDI. She can no longer climb up and down stairs for a job or use a keyboard. She and her Dr. know that she is dependant on the drug now...but who cares, it works and she was nearing retirement anyway. When one falls into that much pain there really isn't much else you can do.

Her case is an extreme case calling for the max pain reliever. Your case may not be that severe yet.

My husband, on the other hand, has SEVERE Psoriasis with hideous scales all over his body. His immune system is shot. He does NOT have the arthritis to go with it though..strangly.

I wish you well finding relief. :hug: