Message Board, Part 2
FROM:B. Gilani
I believe my wife has a reactive arthritis from
chronic exposure to Grotan BK, a biocide in a wallpaper paste sold here in
England. This happened in August 1997. Grotan BK is a formaldehyde releaser.
In October, I took my wife to the General Practitioner who thought she had
rhuematism and gave indomethecin. This drug did nothing for her swelling. So
her referred her to a rhuematologist. While waiting for that appointment, my
wife's classmate at the University of Birmingham had her husband, a doctor
from Sudan, look at my wife's hands. He said 'chemical burn'. I said why
don't you say rhuematism? He said the inflammation was all in the soft tissue
and that there was nothing wrong with her joints. Then we saw the
rhuematologist. We told him about the wallpaper paste and what the Sudanese
doctor said. He didn't believe it could be 'chemical burn'. I said give her
a blood test and see if it's the biocide from the paste. He said he didn't
know how to test for it.
So I found a lab in London on Harley Street that did a blanket triazine blood
test but it didnt test for the NNN-trishydroxyethylhexahydrotriazine. That's
because it is not a pesticide triazine but a formaldehyde releaser. Anyway,
that rhuematologist gave her two steroid injections in her right hand with no
effect on swelling. In November he wanted to put her on metatrexate. I said
that's a second line drug. Let's do sulfasalazine. So we did. Her hands
began to go clawlike. At that time I didn't know to request the services of
an occupational therapist to get her hands splinted. I grew frightened that
this biocide was killing my wife and this rhuematologist was clueless. He
said she just had polyarthritis. So 02 December I sent her to Cleveland, Ohio
for physical therapy from Anthony DiFilippo. End of December she saw Dr Barri
Fessler at the Cleveland Clinic. She diagnosed probable scleroderma.
In January my wife saw Dr Patterson at Horizon Orthopedic. He concurred the
diagnosis. In Feb my wife came back to England. The rhuematologist saw her
and disagreed with scleroderma. He said she looked much better. I then got a
referral from the GP to see another rhuematologist. That one said my wife was
suffering with 'tight tendons' from being inflamed so long. He said he
couldn't say what triggered the inflammation. He too said she didn't have
scleroderma. In March we went back to the original rhuematologist. He said
my wife was better, to stop the sulfasalazine, and to see the surgeon for
shoulders to be forced up under anasthesia. In April, now, she is beginning
to swell again and complains of pain in shoulders. 3 days ago, by her own
instruction, she went back on sulfasalazine. He shoulder operation for both
shoulders is late May. I'm scared that UK doctors are clueless.
For one, why the UK/US dichotomy on diagnosis? Polyarthritis vs
scleroderma? Are there UK politics that I am not aware of making doctors shy
to implicate the chemical? I believe the Grotan BK did this to my wife, but
WHAT did it do?
I have found only 2 references and I am unable to get copies of these
journal articles, though I have requested them through my university library,
nor can I locate the authors, who might well be able to help. They are:
Inhibition of formaldehyde induced arthritis by certain indigenous drugs by RH
Singh and GN Chaturvedi in the Indian Journal of Medical Research, 1966 Feb;
54(2): 188-195; and Formaldehyde in the Occupational environment: A possible
cause of chemically induced reactive arthritis by D Tilsted, AM Hansen, K
Rasmussen in [Danish] Ugeskrift for Laeger, 158(32): 4525-7, 1996 Aug 5.
I would appreciate greatly any feedback. Basically, I have no confidence in
the NHS, and fear that the UK doctors do not understand what they are dealing
with.
Thank You.
Robert Williams
86 Camden Street
Walsall WS1 4HF
United Kingdom
Phone: 011-01922-667-773
REPLY: Hello Robert...
Frightening and makes one wonder the "wisdom" of modern medicine. I am sure someone will concur that reactive arthritis is one of the most common ways to induce arthritis (which itself is a reaction by the immune system). I am always cautious but don't let me slow down the search for answers. Chemical burns are no small matter, whether they appear benign or severe. With a reaction inside our metabolism it is always difficult to come to a definitive diagnosis. But you may just be on the right track. And those who say "it can't be" have reached the end of their wisdom and should really park it on a siding.
FURTHER:
Dear Ed:
Some strange developments of late. I finally located Dr Rasmussen at Herning Central Hospital in Denmark. He said don't waste my money coming there. My wife can only benefit from physiotherapy and pain killers he said over the
phone. Next, the photos came back that I took in November and they were all
blank. Nothing but white. I'm trying to locate a toxicokineticist in the UK
who understands chemical sensitivity and dermal absorption. I asked the
Health and Safety Unit at the Univ of Birmingham, UK for help and they
suggested we see the toxicologist at City Hospital. I already tried that.
His name is Dr Vale and he keeps putting my wife at the bottom of his list.
We complained to the hospital administrator but we're not getting results. I
don't understand why everyone is running the other way. Do multi-billion
dollar corporations really have that much power of us poor hapless souls?
Greg Ryan who lectures in New Zealand thinks it is just a matter of time
before we are approached 'BFI' style. This happened in New Zealand when
someone noticed higher rates of leukemia amongst orchard workers exposed to
pesticides. Thanks.
REPLY:...unfortunately the danger lies in confronting the issues head on. Many hospitals, research institutions get their funding from private citizens, governments and grants from companies. I am not suggesting that they favour these institutions or the corporations behind them, but one only needs to look at what happened with Oprah and the cattle industry, one statement and you're involved in a megga money lawsuit.
Unfortunately we are now at a state where we are afraid to open our mouths, for we may commit
blasphemy, although I personally am not afraid of this. But one must have the facts in hand first before throwing the insinuations. The best of luck to you in getting your answers. Ed.
FROM:[email protected]
I'm reading Egoscue's Pain Free and trying the e-cises. Have you heard of anyone benefitting from the E-cises for arthritis of the hips and how long did it take?
REPLY: Hi Dayton...
ANY e-cises will be benificial. Don't overtax yourself tho' the gov't will do that *smile*. As with any type of arthritis, you must stay as active as you can using "smart Joint mechanics".
Read away, the more truthful knowledge you gain, the more in control over your own life. (or so it seems).
Beware of regimes which totally eliminate some things from your life, and beware of the information for profit. (hang onto your money, or someone else will.)
The length of time to see improvement re e-cises it absolutely personal. NO TWO PEOPLE ARE ALIKE IN THEIR METABOLISH when it comes to arthritis and the reaction due to diet, drugs, or activity.
Hope this helps you a bit, Eddie
FROM:Aubrey
I have just recently been diagnosed as having RA and didn't receive much in the way of information of what to do or what to expect. I would really like to connect with others in my position and hear what they have learned about dealing with arthritis.
Aubrey James
REPLY: So, what are you waiting for? Give Aubrey some informative email...Ed
FROM:Paul
Hi, I live in Thunder Bay Ontario Canada. I am
twenty years old and just found out over the summer that I have
arthritis, it was found in my knees and left shoulder. But I only feel
the pain in my left knee. My doctor has give me Naprosyn,and that has
helped greatly, I can no longer feel the pain in my leg. But find that
running helps me more than anything. I like to jog everyday for about 30
mins a day. I also like to skip every other day and weight lift three
times a week. I like to stay in the best shape possible for martial arts.
But the other day I read in the paper about a man who is know 37, who now
needs a hip and knee replacement because he wore out the cartilage in his
knees by pushing his body to the limit working construction jobs when he
was younger. I need to know if I'm pushing my body to much, is running
everyday wrong? Should I cut down to three times a week, and also
skipping only twice or once a week? I'm just am afraid of hurting my body
for the future, I do not want to be ending up with a knee
replacement,in a wheel chair or hunched over. I love staying healty or I
tend to get very depressed. Could you please help me out.
ThankYou
REPLY: Hi Paul.
Sorry to hear the news, but you should be ok if you can get the knowledge to make some proper decisions.
If you are developing arthritis in your weight bearing joints then you would have to look at the following options.
All the weight bearing exercise you can take except jarring such as jogging. Bicycling would be more adventageous. Also any activity that brings your weight down hard (with a shock) should be considered damaging after a while.
Learn new types of activity such as fast walking, swimming is great, any aerobics that do not jar the joints or the connective tissues.
For pain from arthritis pain killers do not do the job of damage prevention. The damage is done by inflamation, and once that is under control with anti-inflamatories then pain killers are not needed.
Keep as active as you can, by all means strive for what you want but use your joints WISELY and they will last you a lifetime.
I hope this has given you some options to think about and to come to a wise decision. As an aside...we all must age, and some degeneration within our joints is quite normal. I will also ask you to check out your nearest arthritis foundation/society for info. most of it is free. Take care, Ed
From: ***@***.com. ( Kristen )
I've just spent a little time on your web page and wanted to thank
you.
The page is well put together, but I would like to see a little
more information about holistic and/or alternative treatments for
arthritis. My boyfriend has ankylosing spondylitis and I'm trying to work out a combination of traditional and alternative healing methods for him to keep him feeling well. I'm having trouble finding holistic treatments that are specifically geared to A.S.
Thank you again for your excellent work!
Kristen
REPLY...Hello Kristen:
I am pleased you found some info that could help you out.
Holistic medicine is a large part of the new approach to
Arthritis treatment. Unfortunately until the some of the junk
has been weeded out regarding fad foods, treatments, and cures we
are stuck with providing just the facts which have undergone true
scientific study and can therefore be duplicated.
Please do not take this the wrong way. I teach in a holistic
sense and the arthritis self management program does this very
well. I am not allowed by Canadian law to put forward unproven
treatments. Going back to my article on arthritis and the ASMP you will note
that the workshops which are universal and delivered to the public
by the arthritis society or foundation discusses various types of
arthritis, nutrition, treatments including the nontraditional,
depression and states of mind, effective communication,
activeness, MYTHS and get rich quick schemes, and how to decipher
socalled scientific truths.
This is truly a holistic type workshop and to put all this info on
a page would make it as long as a shakespearean play. For the
really enlightening info you are looking for please contact your
local arthritis society or foundation and check into the ASMP. It
is the best thing to come along since sliced bread.
Please keep in touch as I am sure that my page will expand to
include such holistic subjects as are FREE.
I have tried to point out to everyone.....THERE IS NO MAGIC
BULLET, NO ARTHRITIS DIET, NO CURE as yet. IF IT SOUNDS TOO GOOD
TO BE TRUE, THEN IT PROBABLY IS.
After looking at some pages of alternatives I have decided to include
 Minerals and other interesting related sites.
This is a links page which should get you pointed in the alternative direction.
FROM: Lisa Baumgartner
I am trying to find basic information on ankylosing spondlitis (AS). My
brother was diagnosed with it at the age of 18, and I'm researching it now
both to better understand his condition and use in a book (I am an author).
I would like to know exactly what is AS (spinal arthritis--I don't know what
that means?), what are some causes, and what are basic treatments/outlooks.
I know for my brother they gave him a prescription for anti inflammatories,
some back exercises, and if things get too bad, the possibility of liquid
gold injections. Does this sound right?
Oh, and when you say AS inflicts 1 in 1000 people, is that looking at Canada
or the world? Just checking.
Lisa Baumgartner
aka Lisa Gardner
THE PERFECT HUSBAND Bantam January 1998
REPLY... Hi Lisa
Sorry to take so long in reply but I've been updating my system. I know that some of the links are getting outdated so I will be checking them and finding new and correct med info.
AS is a form of inflamatory spinal arthritis that can be ( I don't want to sound alarmist) devastating if you allow it to take it's course. This is the form of arthritis that I have personally lived with since puberty and I am now 52. I went thru many diagnoses from Juvenile Rheum arth to degenerative disk disease before they finally pinpointed the problems. This type of arth needs to be vigorously treated with some type of anti inflam drugs known as NSAIDS (see your doctor) and above all the person must remain physically active. The old form of treatment was rest but they have found this to be the opposite of what is needed.
What your doctor (I hope a rheumatologist-specialist in arthritis) is prescribing is the usual. I would take this to him...in my opinion and those doctors I have spoken to in the arthritis field suggest going to the heavy guns straight away and then tapering to the NSAIDS when the inflamation and degeneration is under control. Basically the gold injections are a fairly long term treatment which does not work for everyone. You see if the inflam is vigorously brought under control then the pain will automatically also become control-able. Painkillers by themselves do nothing for this condition.
I can recommend a book you can order or it is usually in stock at your nearest arthritis foundation chapter. Most of these places have 1-800 numbers. It is called Ankylosing Spondilitis, or Living with...
The stats I give are true for Canada but I am sure that they are not far off in the US. Another stat: arthritis in Canada is the number one cause of disability. Also it seems strange that AS more often occurs near the coasts of the temperate regions around the world. Our Native pop on the Queen Charlotte Islands now known as Haida Gwai has an extremely high incidence, as has Holland, most of west coast BC and the eastern Maritimes. Strange isn't it.
The cause is unknown but studies do point to familial tendencies on the male side and genetic markers are now being studied. This can be likened to Rheumatoid arthritis which afflicts mostly women and the familial tendency runs on the mothers side of the family. The tendency is passed on in both cases but it does not mean that all members will develop the condition. It may skip a generation or even two. What exactly triggers this immune response is not known.
I hope I have been some help to you. A very important part of treatment is to learn to live as active as possible. Please urge anyone with any form of arthritis or those significant others who have to live with people who have arthritis to take the workshop sponsored by arthritis societies around the world....The Arthritis Self-Management Program. It will be the most important learning experience of a lifetime. The cost is very minimal, usually 25 or 30 dollars.
No! I am not a spokesperson for the societies or foundations, neither do I receive any money from them. I do however support them they best way I can.
Please feel free to stay in touch.
Back to the Top of the Page
Due to the overwhelming number of messages this page has been split
Also check out Part 1 and Current
|
|
Board #3 is the CURRENT board.It is open for posts. The previous 2 will remain but are closed
Click to send the Post
By using this email form you give express permission to publish your comments.
Please make sure your return email is active/valid.
Take the ARTHRITIS QUIZ - How much do you know?
A NET-Citizen of the GALAXY
UN Universal Declaration of Human Rights
FROM:Rob
Hello...this is Rob....
I am 42, have had 9 knee surgeries, 6 left and 3 right
for torn cartilage & patella tendon transfer after tearing
cartilage in both knees in 1992. I have had scope after scope after scope
then the tendon transfer which was brutal...AHH...these 90 year old
knees feel great! Also have had 2 shoulder surgeries for
arthritis and 1 big toe joint implant for arthritis.
Prolotherapy was my next adventure after being tired of surgeries..
had 9 treatments (dextrose phenol lidocaine) no real improvement, am
trying CMO liguid now. 'Tis amazing what we will try anything to help get some relief in the old joints...Glucosamine/chondroitin no real help either.
For the knees:
I checked into meniscus transplants also..said I am not ready yet (Univ.
of Pittsburgh medical center) said not until the bones are basically
touching, (I would think that's too late, knee replacement is the only
option then) ahhhh doctors, ya gotta love em "walk a mile in our shoes".
Please feel free to respond, always nice to hear from others.
Take care, Rob
REPLY: Hi Rob
Nice to hear from you and I am hoping someone will talk with you through this website. Thanks for the info and insights, and true enuf...walk a mile in our shoes...
Truly, Ed
FROM:Dee
Hello, What have you heard about the minerals advertised and sold from the book "THE ARTHRITIS CURE"?
I have been told, it works - but I am skeptical. I had hopes you have received feedback from your web page audience.
Thank you for your time on this question. Dee
REPLY:Hi Dee
I will pose this question to my readers on my next update. As with anything that depletes our wallet, caveat emptor. (buyer beware). All people are different and there are no cures. The way you would react to anything would be different than even for your twin if you had one.
I personally do not subscribe to paying for information, and studies are not valid if they can not be duplicated in a scientific fashion. "testimonials" are not proof but are statements purely to bolster the sale of a product.
Sincerely, Ed
FROM:Austin
I have just been told I have a "minor" case of osteoarthritis in my
spine. I was also told there wasn't much that could be done for me until
my condition worsened. My doctor suggested seeing a chiropractor but I
fail to see how this can help. Does anyone have any thoughts on this?
REPLY:Hi Austin,
A minor case of OA is just that. Some OA comes with aging, most of us will have a minor case of it by the time we are 50.
Stay active, join the asmp program in your neighbourhood. A chiropractor cannot really do anything other than to manipulate your spinal allignment and if arthritis has mis-aligned it then there is no benefit.
Take care, Ed
FROM:Stacey
My father has terrible arthritis, he has problems turning his neck some
days, other days its his back, and always his ankles and knees. Where do
we start for help. He takes 8 or more Ibuprophin a day. Any suggestions?
Please help, Thank you, Stacie
REPLY: Hi Stacie
Sorry to hear about your dad.
First, are you in the Americas or Australia?..if so contact your nearest arthritis foundation/society for free literature, most have toll free numbers. Also talk to others in your neighbourhood regarding arthritis, or phone your government or nearest health center to see if they have any programs in place. Also see if you can lay your hands on "The Arthritis Helpbook" by Kate Lorig & James Fries. Ed
FROM:Mary Beth
When I am in the car with the air-conditioning running, the joints in both
of my hands hurt. I never thought I had arthritis, but this happens every
summer, and every summer it is a little worse. Recently, I am also dropping items from my hands for no reason.
Thank you very much, Sincerely, Mary Beth
REPLY: Hi Mary Beth
Do your hands get cold easily, poor circulation? Have you had carpal tunnel in the past? Are you a smoker? Does the effected skin change colour, does it happen to other places such as the toes, fingertips, nose, ears? You see how many questions need to be looked at for any type of diagnosis. Quite often people can suffer from Renaud's Phenomenon, which is a condition of poor blood flow (and is a type of arthritis, primary or secondary). Get it checked out by a doctor, one you can talk to.
Quite often I get that when my hands get cold too, sometime I just drop things for no reason, like having butter on my fingers.
FROM:Ladybug
My mother suffers from Rheumatoid arthritis and she is under a doc's
care, but I am trying to make her life a little easier. The arthritis
is getting steadily worse and her hands are the first to go. I am
wondering if there are any special stores that I can order
things from that will make her life eaiser. Things for her to use around
the house to help her do the basic chores and cooking. Some days her
hands don't work too good.
Thanks a bunch...
REPLY: Hi Rhonda...Phone your nearest arthritis support group, usually find them in the ads section of your newspaper, or in coming event when the group meets. They will have all the info you need, also your nearest arthritis foundation or society, most will have a 1800 toll free number.
FROM:Ralph
I have an 8 year old dalmation who is suffering from arthritis. Does anyone have any success in treating this problem. Thanks
REPLY: Hi Ralph...
Sorry to hear about the bowwow, I've got two of my own..Do you know what type of arthritis it is, is there inflamation, the treatment is of course much like treatment for us humans, after all we are all mammals. They need to be treated by a vet, get the vet's opinion, and the drugs used are prescribed by WEIGHT OF THE ANIMAL, but do not assume that this is always true. When the inflamation is brought under control then most of the pain will vanish - as long as the damage done by the inflamation is not too severe.
I am sure that others have dealt with this situation, so please email Ralph from here with your suggestions, (I don't get a copy of any of the replies from here).
Sincerely, Ed
|
