Date: 30.01.2011
From: Jeff
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Subject: Article: "Rheumatoid Arthritis, What To Do That's Safe"
Quote: "What else is involved in RA that is specific to autoimmune diseases? Circulating Immune Complexes (CIC's). What are CIC's? They are made by the immune system makes in response to an irritation, or an attack by germs. These circulating immune complexes are the primary cause of inflammation, and in some measure the cause of all autoimmune diseases. They are the things your body is making to destroy its own tissue! Somehow, some way your immune system got the signal that your joint tissue did not belong to you, that it was transplanted from someone else, or that it was a germ! That signal caused the response the immune system is supposed to have to bad foreign unwanted cells: attack and destroy. Only here it was not a bacteria, virus or fungus it decided to attack - it's your own joints. What is needed to quell this reaction is immune modulation; something to gear down or otherwise control the production of the CIC's the body is overproducing. After 40+ years of research we know that drugs won't do the job. They can permanently turn off the immune system with anti cancer drugs and leave you vulnerable to any infection that comes along. That is not solving the problem!" http://www.life-enthusiast.com/enzyme/wong_rheumatoid_arthritis.htm
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Date: 30.01.2011
From: x kerry x
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Subject: Re: Article:
so how do we solve the problem?
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Date: 30.01.2011
From: sandra lowe
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Subject: Re: Article:
and your point? i knew that, but if we didnt take these drugs we would be in pain and crippled.
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Date: 30.01.2011
From: Maz
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Subject: Re: Article:
Perhaps your question could be referred to your own Dr .. ask him/her how long the treatment will work for, if you get rid of the pain will the disease continue ?? I realise some are in pain & just want it gone & that sometimes just makes us crabby !!
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Date: 31.01.2011
From: Lynn B
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Subject: Re: Article:
And all the complaining in the world wont help. We know what our imune system is doing to our body!! for gods sake. I dont think for one minute there is a cure out there that the doctors dont know about!!!for gods sake!! my friend is a doctor in America and has tried every thing known to man to help with her RA. Do you realy think anything else is going to cure it, Please tell me if you do I and many millions more would be eternily grateful and you would be the richest person in the world... not... Please stop rubbing it in sorry for the rant.. But you realy are not helping....
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Date: 31.01.2011
From: Jeff
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Subject: Re: Article:
There are many natural pain relievers for arthritis: Rosehip, magnesium citrate, MSM etc. You just have to use your heads, and look for them.
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Date: 31.01.2011
From: Jeff
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Subject: Re: Article:
"so how do we solve the problem?" Follow the suggestions in the article, and the other links I've left on the main message board.
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Date: 31.01.2011
From: Jeff
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Subject: Re: Article:
"I dont think for one minute there is a cure out there that the doctors dont know about!!!for gods sake!!" I'm sorry, but I think you are being a little too naive. Doctors are too busy treating patients to be able to keep up to speed with newer treatments--especially those not backed by the drug companies.
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Date: 31.01.2011
From: bsk
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Subject: Re: Article:
Well now I know you are talking through the top of your head Jeff. Doctors are NOT too busy treating patients to keep up to speed. Mine, for one, is heavily involved in research, as are all the others at my hospital. They also know about all the alternative stuff. Why do people like you always want to ram your own point of view down people's throats all the time? Do you really think you know better than all the rest of us? It is very tedious, not to say patronising.
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Date: 31.01.2011
From: Jeff
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Subject: Re: Article:
All I can say is that doctors have been trained to dismiss any other form of treatment other than drugs. They may know about non-drug treatments, but that doesn't mean they are willing to sanction them. Most of you seem to see all non-drug treatment as quackery--which I find disturbing. It's as if you have given up the battle for a reversal of your illness.
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Date: 31.01.2011
From: gail
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Subject: Re: Article:
Jeff as a qualified nurse with some 25 years experience in the medical profession you are officialy talking out of your ar*e doctors regularly use alternative treatments i.e acupuncture reflexology the constantly keep up to date with current treatments and not just drug related ones your posts dont seem to be having a positive effect in this forum thanks for your input but please stop inflaming the situation and go away
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Date: 31.01.2011
From: Maz
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Subject: Re: Article:
I am dismayed at what seems to be becoming a personal attack on each other about something someone sees as a possible help to their treatment plan, the other sees as rubbish .. Please, why can't you discuss someone's options without getting angry ?? Why can't you just have a healthy debate about things, after all you never know you may learn something ?? bsk <
Noone has said your doctor is too busy to 'keep up to speed' but I think we can all agree that some are - that isn't the doctor's fault mind you it is just a fact of life, there are only so many hours in the day. Does the doctor spend the time helping his/her patients or sit & read what's new. Add to that the experience of the doctor, in my experience doctors tend to do what they have found to be tried & true in their experience & will just repeat that journey with someone else. I don't have to agree with my doctors but I rely on both of them to tell me if I am doing something that may harm me. I guess I am lucky that both of my doctors actually discuss/debate things with me at consult. Jeff,
You are right when you say Dr's are trained to treat things a particular way & yes some dismiss alternatives ,, but you have to remember that just because someone doesn't agree with you doesn't mean they have given up the battle. They just don't agree with you. Everyone here I am sure knows that I use AP to treat my disease & yes it has been successful & I am sure you all know I am anti conventional drug treatment for me, but I know many who are choosing to go down the traditional road, right or wrong, the decision is theirs to make. As a fellow patient & member of this forum I see it in my role here to support anyone and everyone in their choices, I don't have to agree with the decisions they have made.
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Date: 01.02.2011
From: dolly
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Subject: Re: Article:
hey jeff, do you have RA? to come on this site and spout off to many people the way you are is very ignorant. the way you're talking, if you have RA, you havent had it for very long or you wouldnt be talkin so negatively to these ra patients on this site. i've had ra for 41 yrs. and wouldnt wish it on anyone, even like you. there is no easy "solving the problem" when it comes to ra. there is no cure for ra, not as of today anyway. if things were as easy as you seem to think, just taking "natural meds" everyone would be taking them. the deterioration you can get without use of anti-inflamatories is very painful. you need anti-inflamatories to stop deterioration wether you like it or not. when you have RA as bad as some of us do, "natural meds" does not cut it. if you have ra and your taking only these "natural meds" you will end up knowing what some of us feel like, but it looks like thats what you need to understand how some of us are living.
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Date: 02.02.2011
From: Jeff
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Subject: Re: Article:
Dolly, to answer your question, I haven't been diagnosed with arthritis yet. I say "yet" because I have to wait for the results of a blood test to confirm whether or not I have it. But I seem to have the symptoms of RA, although very minor. But my doctor is open to the idea that I do have arthritis, hence the blood test being arranged. Once my arthritis is confirmed, I will refuse all drug related treatment for disease modification and pain control, as I've read about the horror stories involving the drugs for these. I will seek a cure using natural herbs and food supplements, and changing my diet. I have read (and am convinced) that both RA and osteoarthritis are curable. There are simply too many testimonies from people who have gone the non-drug route and reversed the illness for me to rationally dismiss these stories. You may say that I'm putting a lot of faith in this, and you are right. But I think most of you who are using drugs are similarly doing so based on faith. I can understand why some of you are afraid to try non-drug treatments, as most of you have probably been on them a long time, and feel insecure about trying something new to you. I am not critical of you for taking this attitude. If I had been on drugs all that time I would be cautious as well. All I am saying is that the alternative route is not as crazy as most of you seem to think. For example, Maz has mentioned she had suucess with her AP therapy, yet most of you would dismiss AP as an option, prefering to continue with painkillers.
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Date: 02.02.2011
From: Jeff
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Subject: Re: Article:
Gail, I'm glad that in your experience what you say is happening, but this is not the case everywhere. It will soon be, though, as more doctors begin to see the benefits of non-drug treatments.
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Date: 02.02.2011
From: Jeff
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Subject: Re: Article:
Maz, I take on board what you say. As Gail said, I shouldn't inflame the situation--I don't know if she meant that as a pun or not, lol.
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Date: 02.02.2011
From: dolly
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Subject: Re: Article:
good luck jeff. using herbs and such, and belive me when i tell you will not stop deterioration. a blood test for RA takes 1 o 2 days for results to come back. i was diagnosed with a blood test and was told the next day. you dont understand RA and you wont have a clue till you've had it for years. to tell you how destructible to the joints RA can be i've had 30 surgeries. my hands and feet are deformed because back then [40 yrs ago] there werent the anti-deflamatories they have today. in these past 40 yrs i've never heard of anyone being "cured". i've heard of some people going into remission cause they were diagnosed early and took prescription drugs right away. it can also come back after being in remission for awhile. if you had RA i think you'd be doing a little bit more whining than you are now and you wouldn't be thinking of rosehip and such for pain. RA pain is alot more painful then jusr "regular" arthritis. again if you have RA sooner or later you will want a pain killer. if you refuse medications you will deteriorate fast.
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Date: 02.02.2011
From: Jeff
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Subject: Re: Article:
Dolly, the drugs may prevent deterioration but they shorten life expectancy--that's the problem. I suppose this is why the life expectancy for RA sufferers has shortened over the years. RA didn't use to be a lethel illness.
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Date: 02.02.2011
From: dolly
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Subject: Re: Article:
deterioration will shorten your life expectancy. RA affects all your vital organs, joints, bones, skin everything. the only thing that will make you understand is to have RA. i would not wish RA on anyone.
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Date: 02.02.2011
From: bsk
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Subject: Re: Article:
Do you know what, Jeff? I would rather have 10 or so years, or less, of reasonable quality of life than half that in the kind of pain I have experienced. I'm not a veteran like you Dolly but I agree with everything you say. Without the drugs I wouldn't even be walking the little I do. My life would be reduced to merely managing the pain, and it is severe at its worst. I spent 10 days in hospital just to get it down to something manageable. I don't think all alternative remedies are rubbish and I don't necessarily think it is one or the other. My doctors don't just spend their time with the patients. No specialists do in any case, that's how they become specialists! All of them at my hospital are involved in all the major research. I know because I participate in it. Maybe that's only because I am in a London teaching hospital but I am very grateful to them and that research is disseminated throughout the system. Personally, I would rather take something that was well researched and documented, including side effects. It would be so much cheaper to treat us all with rosehips and I am sure they would if they could.
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Date: 03.02.2011
From: Maz
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Subject: Re: Article:
BSK
Couldn't have said it better myself!! Dolly
I understand what you are saying & why you say what you say but remember everyone needs to do what they need to do & that includes Jeff, if his way fails for him then so be it!
Jeff
If you are intending to only use diet & natural herbs for your arthritic problems I am concerned you will fail. Seems to me, from your posts, that you do believe in the infectious theory so you need to think about using AP as well. I don't for one second agree with the whole 'diet will fix it' thing or 'taking supplements will fix it'; however, according to studies here diet does becomes a part of the problem because gluten, dairy & sugars contribute to the symptoms of arthritic conditions. I still stand by my original statement, if you are an informed person you have every right to choose whatever treatment plan you want, however it is unreasonable to expect that others will agree with your choices. I however will support & defend your right to make that decision.
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Date: 03.02.2011
From: dolly
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Subject: Re: Article:
yes maz isaid what i said because i know what im talking about. if jeff choses this "natural or herb" treatment i can almost guarantee it will end in failure. there are certain diets or foods which can cause flare ups but having RA for many yrs you learn which foods will cause a flare up. what isaid i said it to jeff cause he's the one that doesn't know what RA is "yet". i know i'm experienced enough to what i say is very true.
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Date: 03.02.2011
From: Maz
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Subject: Re: Article:
Exactly !!!
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Date: 03.02.2011
From: Jeff
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Subject: Re: Article:
Bsk, I sympathise with your situation. In your case perhaps continued medication is the best option. I'm not saying medication should be ruled out completely, only that it should be a last resort. Maz, I am thinking of AP therapy. It is not a magic bullet but has less side effects (or so I hear) than other drug treatments. Dolly, there are many people who have been successfully treated by taking herbs, supplements, a gluten free diet and other alternative treatments. I've read several books with many patient case histories and testimonials confirming this. Unless these books are lying, I see no reason not to believe them. But I can see this topic is beginning to go round in circles so I will stop posting about it here.
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Date: 03.02.2011
From: dolly
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Subject: Re: Article:
finally jeff you're starting to clue in about people like to read positive things and suggestions, nothing negative.
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Date: 03.02.2011
From: Maz
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Subject: Re: Article:
Finally a light at the end of the tunnel. There isn't anything necessarily wrong with what you were saying Jeff it's just that there is no conclusion to the debate! However I will be interested to watch your progress.
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Date: 04.02.2011
From: dolly
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Subject: Re: Article:
there is no debate. all RA people know that some "herbs or natural" may help you "feel" a bit better but it will not deter, cure, or fix the RA disease. jeff needs to stop "beating a dead horse"
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Date: 12.02.2011
From: shiffy
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Subject: Re: Article:
hi, im a RA sufferer for nearly 15 years. i appreciate jeffs comments as i feel they are extremely relevant to RA disease. this disease is so complex and hard to deal with that anyone who suffers from it will need help from the medical field but they are not the only option. from personal experience diet change, adding natural herbs, adding multivitamins do make a whole difference in controlling the disease activity. please give your body the chance to cope with this disease in the best manner and do not just rely on toxic drugs.
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Date: 13.02.2011
From: Maz
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Subject: Re: Article:
The thing is that there is no cure, not with traditional meds or anything else, but I agree that a diet change etc do make a whole difference in controlling the symptoms, I am clearly a little biased though because I have had remarkable success using AP & diet in fact the only time I am in any pain at all is on the odd occasion when I change my meds & I get the herxheimer effect.
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Date: 13.02.2011
From: shiffy
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Subject: Re: Article:
Hi Maz, Im very interested that you are Using the AP and diet change, please can you tell me more on which antibiotic you have taken and how long you have had RA. i HEARD about the AP treatment from the Road Back foundation
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Date: 14.02.2011
From: dolly
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Subject: Re: Article:
i've had RA for 41 yrs. how much more time do you think i need to learn what i'm talking about. believe me i do. a good healthy diet is essential for any kind of health problem. natural meds and herbs etc. do help in almost any health situation but as i keep saying it cannot cure RA.
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Date: 14.02.2011
From: Maz
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Subject: Re: Article:
shiffy Being that i am in oz we cant get the minocycline that you & others get in USA I use a combination of 4 abx .. I have palindromic arthritis with a little bit of fibro, RA not forgetting that I also have lyme thrown in for good measure; apparently to date I don't have enough symptoms of either fibro or RA to conclusively dx for these (fortunate for me) Minocycline is the abx most commonly used by people on AP -- if you want to know more I suggest you ask on Roadback.
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Date: 14.02.2011
From: Hussain
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Subject: Re: Article:
I have suffered from RA for 9 years and severly for the last 4 of them. Before i went on to conventional drugs, my family took me abroad (pakistan), as the waiting time to start on drugs and going through all the checks you have to in u.k. is woeful to say the least. We were advised by family about a WONDER CURE for RA in Pakistan. Anyway this cure was said to be HERBAL medication. When i went to see the herbalist, he examined me and advised i was indded suffering from RA. He prescribed 4 tablets and a 2 powders to take morning and evening. He advised the medication was 100% safe and herbal, also he guranteed there are no side effects. He advised me to not eat rice, cauliflower, fizzy drinks, red meat, potato and asked me to increase garlic and ginger in my diet. I was told to take it for 3 months and i would be cured but this wasnt the case i had to keep taking it to stay pain free. I was on a wheel chair at the time due to swelled knees and ankles etc. I took this medication for the 1st time and 3 hours later i was up and walking (unbelievable). The effects of the medication would last till the next morning and i would need to keep taking twice a day to be able to walk and use my hands to pick and hold things. The pain would be down by 80%. I took these for almost a year but i had gained 4 stones as i was hungry all the time when taking this medication. When i went to see my specialist i took the medication with me to show him and he said it was most likely steroid based and i should stop taking it. He advised me to take the conventional drugs and after much pondering i decided to stop the herbal. What i realised was after stopping the herbal i felt alot worse than before, maybe my body got used to the herbal and was finding it difficult to function without them. Since i have tried 3 other herbal cures but all were the same and all made me hungry which makes me feel most so called herbals contain steroids as it is a side effect of steroids to make you hungry and gain weight. I have relaised taking out the foods mentioned above from my diet and adding ginger and garlic to my diet does help alot. Just thought id share my story with you guys re herbal (natural) remedies and what i experienced.
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Date: 14.02.2011
From: Hussain
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Subject: Re: Article:
When i went off work due to RA i was put on long term disability and had examinations by doctors every 6 months to stay entitled for this benefit. The doctors were hired by the company i worked for. In 2009 on 1 of my examinations by a doctor who was a leading RA specialist, he told me he was going to advise me of something which other doctors would not tell me or other RA patients. He said a new treatment had just come in and was revolutionary in treating and curing RA. He said it was called ANTI-TNF (im quites sure it was called this). He said it had been developed in Holland and has proved to be very successful and was being used on very few in the U.K. He told me to ask my specialist about this but warned me it would be very hard for my specialist to agree to this as it costs between £10,000 to ££20,000 per patient to have this form of treatment. Anyway, i did ask y specialist and he laughed and fobbed me off. He 1st said there was no such treatment but i was prepared as i had bought internet articles and news paper cuttings re the treatment and put them infront of him. He felt abit silly and aditted that there budgets just could not afford the treatment but maybe in a few years after all other combinations of meds have been exhausted without results only then could they consider such treatment. I would suggest all who have knowledge of this and would like to know ore speak to your consultants and put this forward, maybe you will have more luck than me :-)
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