Posted 17 November 2006 - 02:04 AM
I have been through a number of medications only to realise that this makes my illness worse. After iloprost infusions, I came out of hospital with my blood pressure so low that I was unable to walk around without collapsing. I have done extensive research into Scleroderma and Autoimmunity (Mainly CREST Syndrome). I believe that considering chemicals are a primary cause to illnesses, they are not going to heal or cure you. I know they can helps in times of extreme circumstances.
I have not taken medication for the past 3 years, even one of my specialists told me 'The only thing I can recommend to you is to move to a warm country'. I now use organic vegetables etc. and don't use chemical products such as air fresheners and aerosols to cut down on the toxins around me. I am trying to heal my body through positive mind over matter using forms of yoga.
I would like to hear other views on this! And please forgive the way I wrote this as I am not very good with words and have never posted onto a forum before!!
Posted 17 November 2006 - 05:28 AM
You may be interested to read our page on Alternative Therapies from the Sclero ISN Web Page.
We want to always focus our discussions on proven remedies and legitimate studies from mainstream scientific studies, as covered on our main website. As a result, we have guidelines on alternative therapies that can and can not be discussed here
I hope you find this reading informative.
Posted 17 November 2006 - 06:31 AM
So glad that you have found us here and don't ever worry abut the way you write or post, Just post!
Heidi gave you some great resources to look at, but I wanted to share with you that I to am a organic natural girl!
Staying away from chemicals and eating organically is of course good for us all. I use all organice cleaners etc as well. A lot of my clothing is made from organic materials too.
So good for you! I hope you continue to post often, this is a great place for support.
Love Sweet/ Pam
Posted 17 November 2006 - 06:56 AM
You did a great job for your first forum posting! You're a natural.
I can't tell you how many discussions I have had with people about all the chemicals and preservatives in our food, the chemicals in our air and water and how they could be affecting the health of everyone! I've been an organic foods person for years, many years prior to developing sclero. Since then I think the main part of my diet that has changed is I'm adding more antioxidants like berries and beans. I try to stay away from citrus because I want to limit the amount of Vitamin C due to its characteristic of promoting collagen production. I also stay away from it due to my heartburn. Other things I avoid of course are those foods and supplements designed to boost the immune system.
I haven't gotten to the place that you are at with the elimination of all meds, but I certainly do question any additional meds and am starting to question if the immunosuppresant that I'm on is doing more harm than good.
I've never been able to use detergents with scents and within in the past couple of years have become intolerant of any artificial scents. A few months ago I cleaned out all my old perfumes, scented soaps, scented bath stuff and gave my niece a nice little care package. Some of it was 4 years old or more. She uses that stuff all of the time even though I've mentioned it might be harmful. She's 22 so do you think she listens!?!?! Well - she was thrilled. I did tell her that there was a condition with the gift - she couldn't wear any of it around me. She agreed.
Thanks for starting this discussion. We hope you join us many times. Soon you'll be a pro at this.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 17 November 2006 - 01:30 PM
I admire your determination and willingness to try something different. I gave that road a try a year or so ago, and just gave up. It is a lot more work than just taking a pill and going on with life the way you were raised to do.
I am not sure that I could trust myself to be healthy and keep myself from getting sick without the medications although I would love to try.
What are some of the things that you feel are most important in the natural healing process?
Posted 17 November 2006 - 05:38 PM
Welcome to the site! You bring up a great question. And Janey you mentioned you wonder if the immunosupressants really do more good than harm?
I have always been unimpressed with the statistics in some of the studies. For instance. The big news last year was Cytoxan for lung disease.
But even that was a meager improvement of 2% over controls. 2% better? For all that toxicity and suffering. Makes you wonder.
On the otherhand I've asked the group about MMF (cellcept) and have recieved at least 15 responses from people who sing it's praises. Some responses even claimed that after taking this immunosuppressant their disease went into remission.
Each case is different and I hope you find the right mix Hazeltree! I believe good health is essential to anyone battling this disease. But please don't just turn away from all treatment with 100% closed mind. Evaluate each therapy's pluses and minuses and be open to new treatments and drugs as we're all hoping that some really helpful ones are on the horizon.
Hope you stick around the group and post again!
Michael in Florida
Posted 20 November 2006 - 03:57 AM
Thankyou very much for replying to my post, I feel very welcomed by you all!
I was away for the weekend and didn't get a chance to check the forum.
Janey, Like you, I get a reation around chemicals, I get a funny feeling in my lips when I'm near them, like polishes, bleach and perfumes etc.., funny. Perfume drives me mad and to put this directly onto your skin puts it straight into your system, natural oils are actually much nicer to smell and I get compliments about how I smell so nice, sometimes! Haha..
Yeah, we are organic beings afterall so it makes sence to eat organic. I eat as much of it as I can but can not always get everything I need in organic. I have used beans since I was 11 when I turned veggie and will be using more berries now that I have bought a smoothie maker! Smoothies and Soups are really good as they retain all their nutrients and give you good natural energy.
I read only the other day that Heartburn can be due to not enough water in your system, as our bodies are mostly water it is Very Important to drink alot of water throughout the day, sometimes adding a little salt to hold the water in your body but you may have enough salt in your diet already.
I cannot give you any advice on taking immunosuppresants, my body did not take well to medication. You are the only person that can tell yourself if you feel better with or witout it, but I do think that our system can get used to certain foreign substansis (tablets) which leads to larger dosses, maybe.
Erin, Thankyou for your comment! I am not a total health freak by no means, haha.. I believe that it wouldn't be good to think that you were not able to have some pleasures from the food pallet, I have an addiction to crisps but I actually really enjoy good foods, and im fortunate that I have never had a sweet tooth. I think that if you dwell on not being allowed to have certain pleasures it's not good for you as being HAPPY is one of the greatest healers! So, some of the most important things that I think that aid the healing process are simple- Drink loads of water, be happy, be aware of 'now' and live life!!
americanmike, We 'are' all different and I know that different things help and work for different people. I wish that I could just take a pill and be cured/healed but I haven't found that pill yet, that is why I have taken the road to natural healing. I will keep an open mind to new treatments and drugs.
Thank you all so much for your support, this is the first time I have had communication with people that have the same illness, I don't feel so alone anymore!