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#1 gordon

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Posted 30 June 2007 - 03:34 AM

Hi all
Gordon here As my consultant is not up to date with my condition I have had great support and advise from this forum of which I can't say thankyou enough there are some lovely people within this forum,ive just come across a book which I have to found be good reading it is about healing with vitamins it has a chapter on sclero which I have found very interesting,it does say that what causes most cases is not known,it has highlighted polyvinyl chloride this is found in soft plastics,in spain some cooking oil has been the blame,in the usa it mentions an amino acid suppliment used to treat insomnia,the one that caught my eye was trichlorethylene this is a grease dissolver which I think has now been banned but as a car valeter I used it all the time,but of course I can't say if that was my trigger,further on in the chapter it has a presciption for health I am wondering if anybody is on these nutrients and have they had any help from them,this is what the book recomends a number of vitamins and minerals. I know I would have to discuss this with my consultant but I thought I would put it to the forum as we are all after one thing a good quality of life.
many thanks
fondest regards
gordon B)

#2 jefa

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Posted 30 June 2007 - 04:48 AM

Hi, Gordon. You will find many claims in your journey, so check everything out carefully and as you have planned, check with your medical advisors before trying any new thing. Vitamin e can cause hypertension, for example, if taken in excess. Here is a link to our page on Scleroderma and Herbs, Vitamins, and Over-the-Counter Remedies which says:

"Many herbs and over-the-counter medications can interact with prescription medications, and many of them make scleroderma symptoms worse. Even simple over-the-counter cold remedies often have ingredients that can trigger Raynaud's or heartburn in systemic scleroderma patients. The immune system does not need to be improved in scleroderma, because it is already overactive (and not underactive, as in AIDS.) Doing things that enhance the immune system can actually make scleroderma worse in some cases, as it gives the body more power to attack itself."


Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#3 Sweet

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Posted 30 June 2007 - 05:06 AM

Hey Gordon,

As you know I'm a firm believer in supplements and alternative care. I think the thing to do is work with that in conjunction with a practitioner that you really trust. And be wary of "cures". I believe there is a lot of "help" with supplements and alternative care to make life MUCH better, but I'm not putting too much weight on a "cure".

Best to you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 peanut

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Posted 30 June 2007 - 07:10 AM

Yes, I'd be careful. My mom and her friends were super gungho on these supplements so I started taking them along with the treatment my doctors were prescribing. I started getting worse. My mom freaked out and told me to stop taking the supplements. I stopped getting worse. The supplements were working against my treatment. Some supplements can be beneficial but be careful.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 barefut

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Posted 01 July 2007 - 05:44 AM

I have been afraid to even take a daily multi vitamim. Am I too paraniod? Twice I used a fiber supplement and it messed me up pretty good.

B

#6 Elehos

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Posted 01 July 2007 - 06:57 AM

Hi Gordon,

I don't know if you had the name of the book in your post and it was edited out (anything that hasn't been verified for safety will be), but I've read various material, some very good, but most controvertial. Far too many of the alternative/herbal meds claim that they boost the immune system, and once I found out about the sclero and lupus last year, it made sense why so many backfired. Our immune systems are already in overdrive!

Whatever you've found, I truly hope it helps you out, and please keep us posted on how you're doing since we'd all love to see someone improving! As far as environmental and work related toxins go, I've had far, far too many in my lifetime, and it wouldn't surprise me that all these CTD's are a result of systemic poisoning. Take care, and hope you've found something good for your health.

Best wishes to you,
Elehos

#7 Sweet

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Posted 01 July 2007 - 11:31 AM

Barefut,

I would venture to say it would be perfectly fine for you to take a multivitamin. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 Rachelle

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Posted 01 July 2007 - 02:25 PM

Arent anti inflammatory supplements such as MSM and Fish Oil (Omegas) good to take for auto immune diseases. I am now taking a such supplements along with Glucosamine, Chondroitin and vitamin E.

#9 Sweet

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Posted 01 July 2007 - 02:59 PM

Yes, both of those help with joint motion, movement and decreases inflammation. Lubricates them in a sense.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 peanut

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Posted 02 July 2007 - 04:38 AM

My rheumatologist recommended a good multivitamin. When did vitamins get so complicated? Long gone are the days of the chewable kids vitamin. Now there are so many immune boosting vitamin/mineral/supplement/etc. combinations that I might be weary of. Some promise cures or amazing results – that’s when I get skeptical.

Gimme a Flintstones Chewable anyday...

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#11 Lynda

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Posted 04 July 2007 - 12:40 AM

Hi Barefut, New to this site and have found it to be very informative. I see that we have the same diagnosis. I have not as yet started on any meds, afraid of them, I do take a one a day multivitamin and flaxseed oil in capsule. Could you tell me about the meds you are on, what they are for and how do you feel taking them? I just don't like drugs and think too often doctors hand out prescriptions too easily at times. It is like here try this and lets see what happens. Would appreciate your input.
Lynda