"Arthritis Message Board, Part 1"
Due to the overwhelming number of messages this page has been split
Also check out board #2 and the current board
This site has seen an incredible amount of feedback in the past 4½ years. Although it has been a lot of work keeping up with the correspondence, on the whole it has been a pleasure to receive so much input from so many of you. This page is "moderated" for one simple reason. Unlike the news/usenet groups this page will not be taken over by commercial interests who's only reason for living on the web is to spam our mailboxes and bleed dry our bank accounts.
MY MAIL LIST IS NOT FOR SALE and all your email addresses are confidential unless you post them here with your EXPRESS PERMISSION.The arthritis information on the other page will only deal with medically correct info and treatments. On this page, however, you will find alternatives which may be questionable in the eyes of the medical profession.
Some of the links on this page are  Rated "COMMERCIAL".
Keep in mind the following points.
- ARE THE CLAIMS BACKED BY RESEARCH WHICH CAN BE DUPLICATED
- FLARE-UPS COME AND GO NATURALLY
- WILL IT HARM AN ALREADY OVERWORKED IMMUNE SYSTEM
- ARE YOU WILLING TO PART WITH YOUR MONEY
Please be cautious, both you and I would love to have relief. Fortunately knowledge is half the battle and so I give you the opportunity to check out what may or may not be of help to you;
Here are some Disability-Related Resources
Accessibility writing accessible websites
The Loew-Down on Handicap Access
The Disability Rights Activist
Americans with Disabilities Act Document Center job accommodation
The Trace Center making software & technology accessible
West Virginia Rehab Research Center
AZTech, A to Z Assistive Technology Assistive devices and much more
Parents Helping Parents Parents of Children with Disabilities
Some persons find that foods will upset their arthritis, some alleviate the situation, and others aggravate. Tomatoes are commonly blamed for making some people worse. My observation is that if it bothers you, then don't eat it. Simple, 'he.
A couple of links re: foods and nutrition:
Grace Radoycich Homepage..gluten free
Celiac / Gluten Intolerance Support Page
Nutitional Main Page, here in Williams Lake
Arthritis Book Store Although I generally don't favor commercial sites I feel that this place may have some meaning to all of us with arthritis.
Message Board, Part 1
FROM:KatiRose
I've been given the option of ankle joint fusion or live with the pain. I am trying to find any alternatives to this as I really don't want to get my ankle fused. I'm only 31 and have already had my knee replaced. I am trying to find the latest on ankle joint replacement research top in the field to see if this could work for me. All the orthopods I've spoken with in my area (Brevard County in Central Florida) don't recommend replacement, they all recommend fusion. After all the limiting factors of fusion I don't think it's for me. The one benefit, the only benefit that seems to come from it is pain relief. Well that's great but what about the rest of it. If you can help lead me in the right direction to get some answers it would be great. The internet is really my only hope for finding any thing else.
Thanks so much.
REPLY: Hi Rose
You know there are a lot of remedies out there for sale. My honest opinion is that if you let the ankle deteriorate thru inflamation then it won't be much good to you after awhile. Fusion is quite common and if it gets rid of the pain (and the anti-inflamatory meds or pain killers) then it may be the path to take. Because your ankle carries your whole weight a replacement might be ill-advised as it may wear out much faster than a (large mass) hip replacement. Your ankle is quite small compared to that.
You have another option: pay your money for "let's try this stuff" cures until you're broke, have it fused or live with the pain. Pain tells us that this joint is deteriorating.
Get yourself some medical advice (a rheumatologist if this is due to inflamatory arthritis) and 2nd opinions first and then make up your mind.
Keep asking others and for heaven's sake, save your money.
Yours, Ed
FROM:Karl
I have seen a supplement called glucosamine sulfate advertised by several companies among them 'twinlab' who I consider pretty reputable as helping healthy joint function. I have had, off and on, knee pain for several years not aggravated by heavy cycling or weight lifting but frequently aggravated
by hiking. Does anyone have any experience, knowledge about this stuff. I
have a family history of arthritis but I think I am way too young to be having problems this persistent in nature. Any help is greatly appreciated.
Thanks, Karl
REPLY: Hi Karl
Thanks for your letter and timely too as you have just proven that you are never too young to develop arthritis. It is not an oldperson disease.
Some types of arthritis specifically attack younger people. I was 14 the first time I was diagnosed.
If you have a family history of arthritis it seems to point to a inflamatory type, but you have not stated which of the 125 types of this condition you are talking about. As far as advertised meds or diets, I say "caveat emptor" again. Buyer Beware. And if these ads are backed by "testimonials" then DOUBLE BEWARE.
Truly, Ed
FROM:Lisa M Ryan
My mother has suffered for many years now but has always been able to
relieve the pain with medication, however within the last year the arthritis
has moved to her neck causing her great pain and headaches. There seems
to be no relief, she is taking 600mg motrin but it does not help. The
doctors tell her she will just have to live with it.
She is only 52 and tries to be very active, however this is stopping her
from things she wants to do. If anyone can offer help by suggestion please
do so. Thank you Lisa M Ryan.
REPLY: Hi Lisa
Your mother need not suffer in this day and age. I have myself had vertabrae and disks replaced using bovine replacements.
Find yourself a referral to a neurosurgeon or an enlightened doctor or rheumatologist and go from there.
If your mother finds that her shoulders are constantly sore, her hands and arms numb or tingle it may be from restricted jointspace in the neck or the shoulders. If nerves are being pinched then someone in the "neuro" field should be consulted.
By the way I am 53 years old and had my surgery 5 years ago and am doing great. The headache may also come from initial arthritis pain which is worsened, of course, by tension thereby greatly magnifying the pain.
I would also suggest getting in touch with the nearest Arthritis Society or Foundation and enquire about the Arthritis Self Management Program.
You wont be sorry. (They may also have specialists on staff as they have here in British Columbia.)
I hope this bit of support helps your mother get some relief so that your time together is "quality". She will have to make the effort to insist on her wellness, after all, no one needs to suffer.
Sincerely, Ed
FROM:[email protected]
I am a 24 year old female, who has had Reiter's Syndrome for one year
now. I have inflammation, every day, to every other day. The hardest
hit are my feet and ankles. I would like to know what sort of
long-term damage I can expect. I would also like to know if there are
any other females who have had Reiter's for a year or more. Please send
me information at [email protected] Thank you!
REPLY: Hi [email protected]'m sure that someone with REITER'S will email you...chin up, Ed.
FROM:Cynthia Taylor
My husband is a chronic sufferer of Arthritis, I would like to join a list
that would give me more information on how he can manage his arthritis and
what to do when he has a flare-up. At present he is in constant pain
which is making his life miserable, even though he does not complain, I can
see that pain on his face.
Is there a List that I can join where people will give information on how
to cope with this debilitating disease?
Love and Blessings
Cynthia Taylor, please visit
Our Home Page
REPLY: Hi Cynthia...perhaps you need some local support. Is there a Society Foundation or help-group in Zuid Afrika? There is a book available through the Arthritis Self Management Program called (in N. America) The Arthritis Helpbook by Kate Lorig and James F. Fries. If not then Contact one of the North American Foundations on my Arthritis Information Page and see if you can order it from them. It may cost you about $20 but it is well worth it.
If anyone else has some suggestions please write direct to Cynthia.
FROM:Heather
Hi there!
I have been reading your Web page this afternoon; I have today been
diagnosed with P.M.G. after a blood test. I was hoping to correspond
with two people on your "Letters Page" Connie who has this disease and
Roger who has had this disease in the past; I have since realized that
their e-mail addresses were incomplete!
I wanted to compare symptoms with mine primarily and how they think they
contracted the disease. I am concerned about the effects of the drug
prescribed for me "PREDNISONE" 20mg. will have long term and I have read
some conditions that can result from taking this are glaucoma and
diabetes - both of which are in my Family on my Mother's side -my Cousin
has glaucoma and on my Dad's side an Aunt with diabetes!
I have had these joint/muscle pains since having Flu' in July and have
had a bad sick-headache just last week. Also I perhaps should mention
that I will be 60 in October.
Hope that you don't mind me writing to you but I want to be informed
about this Disease and any problems I may have to face long term. Best
Wishes Heather. New Zealand.
REPLY...Hi Heather...perhaps others can advise you and give some options to examine. I presume you are speaking of PolyMialgia Rheumatica PMR. Connie and Rogers emails were not valid when they wrote to me so it was useless to email them, hence my reply to them via this website.
Please, if anyone has info for heather let her know. Half the battle is knowledge.
FROM:M.J.M.
I am suffering with Arthritis/osteoarthritis. I am a 65 female
who has had four operations on her feet! Unforunately stupid me went to
a Podiatrist the first 2 times, for Hammer toes, bunionectomy and was
promised corrective surgery...WRONG! Had to learn the hard way,
Podiatrists may be good for ingrown toe nails and calluses, but don't
mess around with the bones in the feet!
Trying to make a long story short, this has been going on since 1989,
corrective surgery was performed in 1992 by a reknown Orthopedic
specialist here in Baltimore at a Foot and Ankle Center...
Why I am reaching out to you or anyone that will listen is, I am in
constant pain since the surgeries, both feet, you see the
Orthopedic surgeon had to correct what the podiatrist screwed up, broken
bone, collapsed arch etc..
I was assured that subsequently after healing I would be able to walk
without pain...WRONG!!! I am in pain every night, when I go to bed and
try to relax, the pain starts, stabbing knife like shooting pains, in my
feet, ankles, toes and the only relief I can get is with pain
medication...Darvoset, for one, muscle relaxant for another..yes, I am
on RELAFEN, Yes, I am taking Glucosamine/Chrondroitin sulfate all of the
above.P.S. I forgot to mention I have metal(steel) screws in both feet
over the insteps.
I am suffering every night, find it difficult to walk, and if I do
walk very far, I am in pain that night. I know I am fortunate to
have 2 feet, some people have none but if there is anyone out there with
any suggestions, I would be very grateful for any help.
I could go on & on what my methods have been to deal with this pain, but
it is really to lenghty and frankly boring.....P.S. I have been back to
the Orthopedic surgeon several times, His latest comment was "You have
bad feet"!
REPLY...Hi, you didn't leave me your name...
I would like to put this on my mailbag page and perhaps get others to talk to you if you like. Please, you must let me know because I need permission
to publish this letter.
I found your story touching and painful, and yes, sometimes people do have
"bad feet" but can sometimes be corrected by the proper othopedic footwear.
I am not trying to make your problem smaller and I think most of us are
lucky to have arthritis in other places.
I myself have ankylosing spondylitis which is a form of spinal arthritis
which can also affect other joints as well, plus Lupus. I used to go to
chyropractors frequently until one day and one adjustment too many damage
was done that was not repairable. I should have known something was wrong
much before that when I used to come back with extreme headaches etc.
For those of us with joint problems these adjustments are not warranted and
do nothing. When a joint is damaged and misshapen no adjustment will ever
put it right so hang on and see the correct MD for the situation.
In the case of joints that are interfering with the nerve tissue or the
nervous system see a Neurosurgeon, see my drift?? If you have constant
pains and they ache in places that appear to be deeply concentrated under
but not in the muscle it would be wise to suggest a visit to a "nerve
doctor". (not a brain doctor, by the way)...
I hope you write back to me. If you follow up or at least take into consideration some of the options you get from me or others then our time on the NET is well spent.
FURTHER...Thanks for replying so promptly.I have tried orthodics and own a lot of shoes, my most recent purchase the expert put a metataursal sift pad in the shoes, to see if that would help..I will have to look into a nerve
specialist, if one is on the list of U.S. Healthcare...What do you think
about having the screws removed ???OUCH!
REPLY...Ouch...one thing at a time, see a specialist first.
FROM:Christian Panas
I'm not sure how to post to this page, so I hope you don't mind if I email
this request:
I'm doing research on behalf of a friend of the family who has Ankylosing
Spondilitis. He is in his early fifties, and has had almost total fusion
among his cervical (neck) vertebrae. He is trying to find out about surgical procedures to basically 'break' the fusion, then reconstruct the vertebrae.
As this is obviously quite risky, I am wondering if anyone out there on the
net has knowledge of doctors or medical centers who conduct this type of
procedure. Any leads at all would be greatly appreciated.
REPLY....YOU'VE DONE IT THE RIGHT WAY, (Ed)...
FROM: murp***ibm.net
Hello,
I read your Arthritis pages with great interest. I have found
KETOPROFEN as a topical ointment on the joint to relieve my pains. I am
not severely arthritic, yet. I have not been able to tolerate the
medications by mouth. I do find that whenever I over-exert (I love to
exercise) I become as ill as if I had the flu, with stomach distress and
general feeling of illness. No joint pain then, just an over-all
sickness. I was diagnosed positive with Lymes disease and I wonder if
that is the reason I get so fatigued?
Thank you for your sincere time and effort with these pages you have put
together for us.
REPLY: Hi...Fatigue is a major component. Come back to the Info Page and find the Lyme link. The more you learn the more understanding you'll have, hence the more control over your own arthritis.
Don't leave it all up to your doctor or others, you need to be on top of this yourself.
FROM:Jessica Penn
Hello, My name is Jessica and I am a full blooded Native American. I read your
page and I want to tell you it is very well put together and I enjoyed the
information on Arthritis.
I also want to tell you the funtional food supplement called Arthaffect has
now be enhanced and many people are getting great results with the
supplement. The Arthaffect is a food which helps joints function and now
has 19 different kinds of herbs to help the blood flow to joints and help
with swelling.
I am an Independent Reliv Distributor and Dr. Carl Hastings, Reliv's
Executive Vice President said "Reliv Arthaffect is a functional food,which
is a food recongnized for its ability to positively affect specific
functions of the body."
I wanted to ask you if I could send you some information on the Arthaffect
and the clinical trials that has been done on this product?
You are right there is no cure for Arthritis and there are a lot of meds
for Arthritis which have side effects.
Thank You, Jessica Penn... Independent Reliv Distibutor Thanks for the info Jessica and see below for others who have written in to me. I will check it out.
Email=h***@**ve.com (Roger)
surfing for polymyalgia rheumatica
Questions=I was following my ample nose to find info on PMR which I had last year.
From:p**t@***.bc.ca> (Connie)
looking for info on polymyalgia rheumatica
Questions=Do you know anything of this disease or are you just enjoying your trip? REPLY..Dear Connie..Hello Roger...
At present there are no medically correct resources on the net about PMR, so no links are established, but I will ask my doctor just for you. Stay tuned in and smile, it is not always easy for any of us...back in a nano-second...
A severe aching of the muscles, recently recognized as a major type of RHEUMATISM ..POLY = MANY, MY = (root) MUSCLE, ALGIA = PAIN or ache.
The syndrome has been recognized since the 1960's, cause unknown, the pain seems related to inflamation of the small blood vessels that supply the muscles. It is probably an "artiritis" which is an arterial inflamation and not one of joint inflamation.
The treatment is very effective if the proper diagnosis is made. The
condition is unusual but not all that rare. It is sometimes confused
with psychogenic rheumatism (usually only by lawyers), you know the type used in lawsuits after an accident or job injury, and being such seem to
have a miraculous disappearance when the stress and legal stuff is over with.
Back to PMR... without treatment the condition seems to last for 3 to 5 years on the average and then gradually disappears. During the active period without much treatment all patients will have been very symptomatic and a few will have vision impairment in one or both eyes. The pain can at times be overwhelming.
With treatment the person will immediately improve to feeling well with few aches and pains typically within a few days of the start of
treatment. Usual drugs include corticosteroids such as prednisone or
something alike. Blindness after treatment is extremely rare unless
treatment is not sought and the damage has already been done.
Complications from treatment are also rare. The general response is extremely dramatic. The condition is found mostly but not exclusively in persons who have been extremely active throughout their lifetime. In days gone by it was associated with getting old but have now come to the conclusion that it is not aging that is the problem here. Some physicians treat this condition with lighter drugs such as NSAIDS (non-steroidal anti-inflamatory drugs) but because of the immediate relief by DMARDS (disease-modifying anti-rheumatic drugs) most doctors will go the heavy gun route if not for the comfort of the patient then for the inflamation which can do irreversible damage.
Sometimes the symptoms return in a milder form after decrease in
medication and this is where NSAIDS (non-steroid anti-inflamatory drugs) are most used. Do not expect your
life to be without aches and pains as everyone once in awhile has them
and copes with them. But if you find yourself with a low grade fever,
long term aches which don't let up please see your doctor and become an equal partner in your treatment. My doctor once said to me ... Gee Ed, I dont know what that is...I will have to look it up or consult with my collegue...I think he is a damn smart doctor.
FROM:John Porter
People with arthritis are obtaining outstanding results from an all-natural treatment called CMO. This formula as first researched at the US National Institute of Health and just recently formulated into capsule form and released for the public. Abundant Health Resources QUESTION: For what type of arthritis?? There are approx 125 types....and each one is different.
FROM: Marge Berger
I have some incredibile info for you. A product called Cetyl
Myristoleate (CMO..trademark and name), which was originally discovered
and researched at the National Institutes of Health in the early '70's,
has been "rediscovered". Clinical tests in CA. have provided info on the
correct amount of this all natural fatty acid ester, necessary to act as
an immunomodulator and eliminate most arthritis in 12 days. There is
one book on the product,written by Dr. Douglas
REPLY...Hi Marge
Thanks for the info. If it provides true relief for some then most of us in the arthritis field are happy with the results. However, do not expect a rubber stamp of this product. Caveat Emptor (Buyer Beware)
FROM: Marge writes again...Subject: CMO imposters
Hi Ed,
Since last I wrote about CMO the product continues to give 20 yr. sufferers
and others 70-100% permanent relief from arthritic symptoms. I have never
had to advertise the product as word of mouth has brought me all the
customers I can handle.
Most (70%) need 2 bottles to get the relief they
desire and to be able to stop all pain meds. The rest( usually those who
eat a lot of beef) get great results with one bottle as they have the
enzymes built in to digest the CMO which is made from a fatty acid ester of
cattle.
I am a bit distraught over the fact that most of my business time is spent
explaining how the imposter products are copying the research of Dr. Sands'
trials and using it to promote their copycat product, made from vegetable
sources, that does not work.
Any chance you could alert your viewers to check the source of the CMO they
are about to buy? If it is not made from an animal source and manufactured
by ProMed Management from Chula Vista, CA.....DON'T BUY IT.. There are
other companies claiming to have the real thing but if they won't send you
in writing the trials (research) done on their product...BEWARE!! There are
several distributors on the net who market the real stuff..I am not the
only one.. I am sure they will all be happy to share the research with
interested people.
Thanks for any help you can give.
Marge Berger
REPLY: Hi Marge. As this page is a free forum albeit extremely moderated by myself I do find your words of BUYER BEWARE timely. Although I remain neutral in promoting articles for sale your words (from a promoter) will surely make others think twice before spending their hard-earned money.
FROM:Karen S. Fredrick
I was diagnosed with RA at age 35, 15 years ago. I've been through steroids, gold, anti-inflamatories, etc. It's been difficult finding medications to keep the disease under control and the last 5 years it has become severe at times.
This last spring along with inflamation and extreme pain all over my body I also became very fatigued. I was immobile in bed 50% of the time and at wits' end. I went to a meeting about a homeopathic medicine from Argentina and decided to begin taking what they call CLINICAL DOSAGE INJECTIONS. It is called HANS and is supposed to enhance your immune system. It has done wonders for me. I am functioning normally now. The disease is still there. I feel it in all the same joints, although very mildly in comparison and the fatigue is gone. I am so thankful. Should you desire further info please feel free to contact me.
GOD BLESS, KAREN REPLY: Dear Karen
I am very pleased that you found this treatment so helpful and your concern in writing this to me shows your concern that there may be others who may find it helpful, but not all persons with inflamatory arthritis may get relief.
I will try to hunt down some info on this to publish on my page under alternatives and if you can help me in this it would be much appreciated by not just me but probably many others in the same boat.
Keep fighting the good fight and may the Great Spirit guide you onwards.
FROM:Larry Pope
Re: ARTHAFFECT
Because of my 5 year affiliation with a company called Reliv International my wife and I have been fortunate enough to be some of the first to get to use a product called ARTHAFFECT. It has been in Germany for many years and has had great success in not only relief of joint pain but actual regeneration of the cartilage. These results are backed by several studies. These studies are available on request. In just a few days my wife got relief from pain in her hands and in just a few more days in her knees all of which have been a problem for many years. Now less than a month later she reports NO pain in either hands or knees. PLEASE take a look at this product. news release was sent out to the media on October 23rd but all the election hype was going on or the news media just didn't understand the impact of this product on 47 million suffers. I believe this is a solution to the problem of degenerative joint conditions something I never expected to see in my lifetime. The ingredient in ARTHAFFECT is ARTHRED. It is not a drug but a food and has been granted a U.S. patent. all the years of use in Europe it has no know side effects. I am very excited about this Anyone willing to try it will be just as excited. Start working on the PROBLEM instead of dealing with the symptoms Anyway, to contact the company for more information call 314-537-9715 product order 800-735-4887 distributor ID %2397274701home Ph 805-985-4414 This product is distributed exclusively through Reliv International so you can use numbers above to order ARTHAFFECT or find someone who is a Reliv distributor and get it through them. I don't really care who you get it from just get it and get relief from the debilitating pain permanently.
Thanks for taking the time to read this.
Larry Pope
Independent Reliv Distributor
FROM:[email protected]
Just thought I'd drop you a note about a breakthrough in the treatment of fibromyalgia. Thousands of people are experiencing dramatic results with a natural product called Everlasting with Collastin. It is laboratory tested and clinically proven so you know in advance that it really works.
To request more information, send your name, address and phone number. REPLY: You didn't send me a name or product outline, nor did you give any indication of the "scientific" proof you claim.
FROM: Chris and Chas Adlard
Perhaps you would consider adding a link to the
Road Back Foundation. They are a non-profit organisation who supply information to patients and doctors worldwide on the use of antibiotics to treat rheumatic diseases. This treatment was used by Dr. Thomas MacPherson Brown, the founder of the American Rheumatism Association and an advisor to the White House, to successfully treat 10,000 patients over 52 years. This information may be useful to some of the readers of your page. Thanks, Chris Adlard. ED: So done...I wonder if it is covered by most medical payment plans???
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Due to the overwhelming number of messages this page has been split
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IN THE NEWS:
New Product for Repair of Damaged Knee Cartilage Approved
The FDA has approved Carticel, a new product that uses the patient's own cartilage cells to repair damage to the knee. Carticel is the first product approved under the FDA's new manipulated autologous structure guidance document, which deals with products composed of living human cells manipulated outside the body and returned to the patient for structural repair or reconstruction.
Treatment with carticel includes harvesting and isolating normal cartilage cells from the knee, culturing and expanding them in the laboratory, and then implanting them in the knee. The cartilage cells, known as autologous cultured chondrocytes, are approved to treat injuries to the end of the thigh bone behind the kneecap, but they may not be used for patients with damage to the kneecap or lower leg bones or those with arthritis.
COMMENT: (my note: Ed) For those with arthritis do not dispair. Most Degenerative Joint Disease is considered a form of arthritis. What they meant to say is that in cases where damage is severe and unrepairable then this treatment is useless. This is by the looks of it aimed more at sports medicine.
From [email protected]
I've just recently been told I have AS so I'm happy with any info I can find. This is a great start. Thanks. REPLY...I am glad you found the basic info to get you started. You may also phone your nearest arthritis
foundation and enquire about the book...ANKYLOSING SPONDILITIS or STRAIGHT TALK ON AS. They were a great help for me. You must also understand that because we are all different in our metabolism that for each of us there are some unique and different problems. The main crux of the matter is to keep very active even if it hurts...attack the inflamation vigorously... and keep smiling.
From: I***[email protected]
Do you know anything about, or can you please point me in the
direction?, the use of shark cartilage in the treatment of rheumatoid arthritis? My WWW search has yielded nothing on "sharkilage."
Thanks so much for answering this letter.
REPLY..Hello, try and search for shark cartilage through yahoo or any other search engine..Use "shark cartilage"...Please be advised that these products will cost you MONEY.
The info I have are the un-inflated claims. If you get a chance compare it against the blown up claims which have no real proof (testimonials are NOT proof.
Sharks have reportedly high levels of an active macroprotein called IDC. In our bodies it seems to help reduce degeneration within joints and cartilage. The immune system seems also to be somehow affected by this IDC. having somewhat of an anti-inflammatory action.
Studies up to now point to achieving the above reactions, however there are Vitamin companies who claim their research shows much more.
Until the claims are proven I can only direct you to your physician or pharmacist,talk it over with them.
One of my clients was advised to try it (by her physician) as an adjunct to the anti-inflamatory drugs and she had no ill effects. She claimed that she was able to increase her range of motion without as much discomfort as she thought she would have.
Notice my CAUTIOUS optomistic attitude....Shark cartilage has a high content of calcium, phosphorus and zinc. Athletes use it for increased energy and well-being, but even they differ wildly about the ultimate effects.
FROM:Richard Danzey
Recently heard mention of a potential product called Syn Vic, a replacement synovial fluid. I find no mention of it on the net. Any reference to or knowledge about Syn Vic would be appreciated. Also, an author named Pete Egoscue has written The Egoscue Method of Health Through Motion. His claims are impressive, but imply 'normal healing processes' which other sources seem to indicate can't/don't/won't happen. I'd be interested in other folks' experiences with this man's Program and/or opinions about his allegations and method. If this needs to be relocated to a different location to become a public comment, I'd be grateful if you would arrange that.
Thank you. Richard Danzey
REPLY: Hi Richard
This request was discovered in my guestbook which lives at Guestworld and not on this server.
However, I managed to respond, albeit kinda late.
Regarding the "normal healing processes", in arthritis once a joint, ligament, etc is damaged it cannot repair itself. The crux is to stop the damage before it starts. This starts with a diagnosis that is on the button which is in some cases extremely difficult to make and usually involves the process of elimination.
Take the case (about 10 years ago) of someone with AS. It was diagnosed as disc disease, or osteo, or ... etc. get my drift? And of course we all know that keeping a joint moving is the best way to keep it healthy. A lot of people are even now of the opinion that a sore joint needs to be immobilized. Just the opposite is true (except for breaks).
Synvisc is a new largely untested (to my knowledge) fluid supplement and I question whether it is cortisone based. Cortisone injections have been around for a long time and can provide immense relief. A series of 3 injections into a jointspace is usually adequate, and more would definitely be detrimental.
Anyone who has any knowledge of the questions posed by Richard please write to both of us so I can post it on this page.
FROM A DUTIFUL READER: Biomatrix manufactures Synvisc, which is injected into arthritic joints to reduce pain and increase mobility.
FROM THE COMPANY: Synvisc has been clinically proven to relieve knee pain and thus improve mobility in osteoarthritic patients who do not get adequate relief from simple painkillers (e.g., acetaminophen) or from exercise and physical therapy. The company received market clearance from the US Food and Drug Administration (FDA) to market Synvisc in the United States in August 1997.
Synvisc is now available on the order of a physician (or properly licensed practitioner) and is administered as three intra-articular injections into the knee joint during a two-week period. A treatment course of three intra-articular injections is priced at $495 to the patient.
Synvisc is manufactured by Biomatrix and sold in Europe and in Canada through marketing and distribution agreements with a number of large multi- national pharmaceutical companies including Boehringer Ingelheim, Hoffmann La Roche, Rhone-Poulenc Rorer and Wyeth-Ayerst. In addition, Biomatrix sells Synvisc through its wholly-owned subsidiary, Biomatrix UK, in Great Britain. Biomatrix also has a marketing agreement with Bayer AG [OTC BB:BAYZY - news] to market Synvisc in Israel, Australia, New Zealand, and certain countries in Asia.
From a news release:
Treatment for Osteoarthritic Knee Pain Cleared
Synvisc, a non-pharmacologic therapy derived from natural hyaluronan, has been approved for the treatiment of osteoarthritic knee pain. Synvisc provides pain relief to those patients who do not get, adequate relief from simple pain killers or from exercise and physical therapy.
The treatment goal is to supplement and restore the elasticity and viscosity of the synovial joint fluid. This is accomplished through the use of new medical technology, visco-supplementation, which has physical properties comparable to those of healthy joint fluid.
FROM:Bob at epix.net
I hope this is the place to post a question on Arthritis. My doctor
recently said that the pain I have been having is due to arthritis in the
spine. X-Rays were taken (Cervical and Thorazic). I want to state my
symptoms and in so doing see if anyone out there has had the same
diagnois or if anyone has some feedback to indicate my Doc has been
eating too many bananas.
Symptoms: Stiffness, lack of mobility in neck, general discomfort
feelings in entire body (sense of ill-being), severe headaches with
actual pain in neck muscles and scalp tissues up both sides of the neck.
Some radiating pain into left clavical/shoulder area. All of this is
pronounced when I lift or pull objects of 10 pounds. It has also become
more progressive, more frequent. To be more specific, if I lift a potted
tree of 15 pounds, I will incur headaches the next day that will last for
two days, and I will have weakness in neck strength as well. Last
weekend I did photos of 80 kids, me squatting down, getting up, per kid,
and holding and using a 8lb camera for 4 hours. This created headaches ,
neck pain, some back pain, and overall ill-feeling even up to today,
Tuesday.
Doctor gave me anti-inflammatory over two weeks ago. Generally, I had
been getting better, unless I do minor lifting. So I am not sure if the
anti-inflammatory is helping or the fact that I have been watching my
lifting and doing less of it.
Anyone can help!? Bob
REPLY: Anyone please, help Bob.
You did not state what type we are dealing with. A note on the drugs...anti-inflamatories will reduce the inflammation (these are much stronger than aspirin) thereby reducing the discomfort. If there is a feeling of "ill-being" it may be due to a lowgrade fewer which often accompanies several types of arthritis. Also take into consideration that quite often the problem is in the spine or cervical area but could manifest discomfort in the shoulders or elsewhere.
FROM: C. Aspinall
Got to your page from an arthritis link...
I know you're not a doctor, but had a question about whether or not talking with a pediatric rheumatologist would be a good idea for my 5year old son. I'm a medical social worker at a peds hospital, and my son has already undergone several evals so we didn't even want to talk to another group unless it seemed to make some sense.
Anyway, my son has had many probs and no answers to
those probs. He had chronic diahrea of infancy, chronic sinusitis, asthma (or reactive airway disease) he has high cholesterol (fasting level was 205), several bouts of extreme infectious torticolis, he often wakes at night screaming in pain in his ankle bones (not foot or calf cramps). He had an
infectious disease work-up, CF test, allergy testing (all negative).
There is family history on my side of congenital spondylothesis, my brother who is 37 doesn't have the HLA marker but has had arthritis like symptoms in adolescence and now has "the hips of a 60 year old". My sister is on anti inflammatory meds, and my older son has neurogenic bowel and bladder. I have had chronic back probs, negative marker.
Enuf said...Do you think a review by pediatric
rheumatologist would be helpful? And if so what would you predict their concerns would be? Also, your personal page is awesome... Will send this off, and revisit it.
Thanks for any response. C. Aspinall
REPLY: Hi, and thanks for the mail.
It is not up to me to be giving any diag but here are the options. A pediatrician would look at several factors, and
with what you have described he would be interested
in your son's immune response and hormone levels (growth, etc). Most types of inflam arthritis are due to immune problems. This then may also tie in with the several other health concerns you are dealing with. And yes, there is a familial tendency towards certain types of arthritis. This
means that the tendency (marker) is passed to the
next gen but not necessarily the active disease. Our
metabolism is such that for some arthritis will
develop but in others the tendency is just passed on.
Now you see why I disapprove of the universal cures
that are for sale especially on the internet.
Because our responses are so varied ipsofacto there
cannot be a cure for all of us. But on a genetic
level this is another story.
Perhaps your son can be of some help on the research
end. See what is available from the research centers
listed on my page. These are the many resources
which have allowed me access to their sites.
By the way, you are awesome yourself for dealing with
this problem is such an objective way. By all means
push for a referral to a pediatric specialist, Some
arthritis societies or foundations have their own
specialists. Start by contacting the chapter closest
to you. By the way I am not employed by them or receive any remuneration.
I hope this has brought some encouragement to you.
From [email protected] Guy Kezirian
Like so many of our medical colleagues, your comments ignore many of the great treatments being developed outside the US and Canada. For example: I am in a program at American Biologics in Tijuana, MX. which is *not* steroid based, contrary to misinformation you may have heard, and which does not use MTX, etc. which I have tried in the past. It does use anti-oxidant therapy, vitamins, and live cell injections of calf embryo tissue, similar to treatments used in Germany, Switzerland, and Denmark. Anyway, while I think it is great to emphasize good joint use, proper diet, medical compliance, etc. it is sad to hear your comments about there being no cure.. There is certainly no cure that we have here in NA but many feel there may be cures in development. REPLY...
I am glad you took the time to make some fine points. I am not a doctor but an educator who has to work with whatever correct medical knowledge is available to me and my clients.
I do not mean to sound in any way pessimistic. My fervent hope is that a definitive cure will be available in my lifetime. I know there is some fine research going on around the world and these topics are discussed in the ASMP workshops. Mexico has at times taken a bad rap and in some cases deservedly so, however without the medical mavericks of medicine we would still be back in the 1950s. I do infer in my article that at present there is no cure, which is true. I also state that genetic research is underway to find the causes of predisposition. I am personally hopeful but my aim is to educate those who would spend their lifesavings for the magic bullet with the usual gadgets and diets offered for sale. You make some very clear and hard points. I would like my pages to give people the ability to think for themselves and to debate with their medical caregivers their own course for treatment.
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