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Ex-lupie

Discussion in 'Complementary therapies' started by tha, Apr 6, 2010.

  1. tha

    tha Registered

    Dear friend,
    I’ve read your stories and feel my old pain in every story. I hope my story would be helpful to you. English is not my 1st language, but I hope you could get my message.
    I used to be a lupie too, many yrs ago. The immune system attacked the kidneys, hip bone and the thigh bones (femurs). I could not walk properly and at some points I had to lie on the living floor to take care of my kids. The pain kept me awake most of nights and that made my health worse (I had to quit school at 1st yr of college), and test after test…as you all have experienced. I also had rash most of the times but not in butterfly shape (which is typical for people with lupus), and I think those rashes are not from direct sunlight. I cried and prayed God every day to free me of this disease…
    I had lupus for about 5 yrs then one day my Mom remembered when she was young; she lived in a war-worn village. People there had no doctor or medical care; whenever they get sick they only use turmeric and nobody get side effect. I was desperate and wanted to try using Turmeric (There’s no internet at that time to Google turmeric…). I only had pain killer at that time. I’d found out whenever I use it, the urine test on next day was good (small amount or none of red blood cells or protein), and whenever I stop the test showed like before (large amount of red blood cells). I knew turmeric has some effect on my condition, it minimized the symptom; so I continued use it almost every day. About 3 week later I could walk normally, but my kidneys were still damaged. I used it on and off for about 5 yrs until the urine test had shown negative for a long time. I used it on and off because the taste made me tired of it and I was not sure it could cure the disease. I think if I use it every day you may get cured sooner. Now, I’ve been free of it for many yrs without using turmeric. For the last few yrs I’ve seen so many research about turmeric, and they found out turmeric can help some health problems, but not much for lupus.
    I don’t know anyone around me have lupus, and this is the experience on my own body only, but I think if Turmeric works on me, it may work on you. East Indian people use it every day in Curry. I got turmeric from a store in Canada sold in bulk bin for cooking. 15 yrs ago it cost me about 3 Canadian dollars for a kilogram of turmeric powder, and that enough for me to use for a year. Lately the price is about 7dollars/kg. Now a day natural food store carries turmeric capsule which is easier to take but the price is much higher. I used to use the raw form without capsules, and mixed it with honey or corn syrup so it could be formed (I used gloves because it’d tainted my hands). Please search on Internet to find more information about it. God bless you all.
    Ex-lupie
     
  2. doris999

    doris999 Registered

    Sorry to point this out to you, you will never be an ex lupie. there is no cure for lupus.
    The turmeric may help your sypmtoms, but not cure them.
     
  3. Katharine

    Katharine Registered

    Hello and welcome,

    It's good to hear that you are doing well and seem to be in remission. As doris999 has said there is no "cure" for lupus so if you did have lupus then you still do, even if in remission. There are some studies being done into turmeric due to its anti-inflammatory properties but obviously we must always be careful to consult with our docs when using ANY alternative or natural remedies as they can have hidden side effects and drug interactions as well.

    Katharine
     
  4. tha

    tha Registered

    Hi Doris and Katharine,
    Thank you for replying. All the test show negative since the end of 1999. I bought life insurance in 2004. They did check carefully my health record + a few tests done before they proceeded. I haven't been sick like that time for the last 10 yrs, gain some weight (I was very skiny before), and back to work-force again since then until now. I know it's hard to beleive...I didn't for a while.
    Tha
     
  5. lazylegs

    lazylegs Moderator

    You are very fortunate to be in remission Tha. I hope it continues that way for a long time to come.

    In doing some research I did find some diseases were helped when using turmeric due to it's inflammatory properties. However these were all very small studies. I had difficulty finding any longer term studies. It has been found to interfere with a few medications so anyone considering using turmeric should check with their doctor first. Also it can have some unwanted side effects.

    The following sites give a brief overview.

    http://www.umm.edu/altmed/articles/turmeric-000277.html.

    http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-turmeric.html

    Take care,
    Lazylegs
     
  6. tha

    tha Registered

    Thank you, Lazylegs.
    Take care,
    Tha
     
  7. Mindful Lorna

    Mindful Lorna Registered

    Hello Tha
    Firstly, thank you so much for sharing your positive news!
    I've been doing a fair bit of research on the subject of 'reversal of lupus' from a mindbody perspective, as it's something I very much relate to.
    I'm finding, more and more, theres a very high incidence of people having a very clear diagnosis of lupus, but from their work, conscious/subconscious on mindbody and a lifestyle changes, they are showing clear bloodwork and no symptoms. I've also spoken to rheumatologists and a wonderful immunologist who have echoed that this is more common than I thought initially.
    I'm fascinated by mindbody approaches, and have been focusing my own approach with lups/RA and Arnold Chiari Malformation on this. I have found that for some people, they wrongly believe that mindbody approaches are 'alternative' and have a very fixed idea about health and wellness, with regards medcal conditional. I have also been on the recieving end of quite strong reactions from people who wrongly beleive that the work of Dr John Sarno (who is absolutely respected as a groundbreaking medical physician) is about thinking that conditions are 'psycho-somatic', which is not at all what he is advocating.
    For me, personally, I have seen people go from diagnosis to complete healing so many times that I know that I cannot close my mind to what this is telling me about health and wellness and how we can, in some and many situations, heal ourselves, and that this does included lupus.
    I am very inspired to hear your story and experience and it one of hundreds (indeed thousands!) of cases worldwide, where healing does occur. It's not as straightforward as the mindbody prescription appraoch to fibromyalgia (and the other 'tension myositis syndrome' equivalents) where complete healing occurs, but it can be done, I beleive that wholeheartedly, and have seen it too many times, and spoken with medical practitioners who see in every week in their practice, to beleive in a fixed idealogy when it comes to health and wellness.
    So, thanks for sharing - it's wonderful to hear stories where reversal has taken place, or things are working!
    Best wishes
    Lorna
     
  8. KarolH

    KarolH Registered

    Hello Tha,
    I am glad to read your story and so happy your in remission now.
    I hope it continues for you for many years to come.
     
  9. pennylp

    pennylp Registered

    Hello Tha,

    Thank you for sharing your story, I am one that is going to try and take tumeric... I have heard a lot about the health benefits of it... And if it gives me a little relief I will be happy... I will let you know if it works for me... Right now I am in a flair and the meds I am on right now are not helping one little bit... I will continue to take my meds but I will add tumreric also... It sure can't hurt...

    Thanks again..
    It is great to hear good stories.
    Love Penny
     
  10. sushi

    sushi Registered

    hi tha, are you talking about the tumeric that comes in a jar? if so, how do you use it?
     
  11. doris999

    doris999 Registered

    Hi Penny,
    Before you start please check with your Dr, it may cause a reaction with your other meds.

    I would like to add that i have tried many suppliments, with or without meds and with Dr's approval and have found that none have worked for me, but i'm not saying they may not work for you.

    Just be aware about the interaction they may cause, and always check with your Dr first.

    Sand.
     
  12. greenhaggis

    greenhaggis Registered

    Hi,

    Just must add that you should always seek the advice of your specialists before embarking on using any alternative remedies.

    There are many complementary treatments that do not mix well with certain prescribed medications.

    Also important to remember that and what may be good for one health condition may really have a severe reaction for another condition....many of us have more than just Lupus.

    On the web there are many ariticles for the pros and cons of Tumeric and its use medically, there have not been many clinical trials to prove claims either.
     
  13. greenhaggis

    greenhaggis Registered

  14. lazylegs

    lazylegs Moderator

    I posted the same link earlier in the thread :lol:

    Breanne
     
  15. greenhaggis

    greenhaggis Registered

    So you did Lazylegs,;)

    Just goes to show how rubbish my memory/recollection is, perhaps 'attention span of a fish' describes me at moment!:blush::hehe:
     
  16. tha

    tha Registered

    I got it from a Canadien grocery store. It's been stored in a bin in bulk bin area (for cooking). I used about 1 heep teaspoon a day. At the beginning I took it w/ water then later I mixed it with honey or corn sirup and form soft and flat pills for easy to take. By that way you don't taste it and you won't get tired of it. I worry about side effect too, but after talking to my Mom who confirmed that the people in her village took 4 heep teaspoons/day and they were OK (of course no doctor at that time to confirm that...:-( ) and talking to many East Indian people who have curry almost every meal; I wanted to start with 1 heep teaspoom/day. Take care, Sushi.
     
  17. sushi

    sushi Registered

    thank you very much tha.
     
  18. tha

    tha Registered

    Hi Lorna
    Thanks for sharing your thought too. I've read others stories and think I've been healthy for that long time, free of pain, have a chance to raise my children up (one is 20, in 3rd yr of chemical engineering; one is 17, in grade 11); I cannot keep this experience for myself. Take care.
    Tha
     
  19. greenhaggis

    greenhaggis Registered

    Hi Tha,

    I am really so glad thing are working well for you, and hope that you remain symtom free for life.

    I must say though that I have 4 under age of 11 (and within 6 years), also have SLE and various others things, I manage pretty well raising children without the aid of complimentary medicines or any other alternative therapies. Many sufferes with chronic life threatning SLE symptoms still raise children (if they have them), its completely possible, appologies if I come across as being offended by what you stated, but there is always another side to a story on lifes battles. My 'work' in life is to live life to the full for my and my family....we all deserve quality of life and that is what we need to 'work' at to achieve in whatever way we find possible.

    Each to their own way of doing things and surviving...no-one fails ever in my opinion!

    It would of course be nice to be symptom free of SLE, as there is no known cure at present those with SLE will have it for life.

    The above is from my heart as someone who has SLE only, not a moderator, just me!
     
  20. ElephantEyes

    ElephantEyes Registered

    Hi Tha -

    I'm glad to hear that you are keeping so well these days! It's very encouraging to hear and I hope it lasts for you. I just wanted to throw in my two cents worth about being an ex-lupie.

    I was diagnosed in 2001 with DLE and SLE in 2002 and I was very ill. I required urgent hospitalisation in 2002 and 2003 with autoimmune haemolytic anaemia, pericarditis, severe dehyration, tachycadia etc. However, with plaquenil and tapering off of steroids, my disease activity came under control. Up to about 15 months ago, I could have described myself as an ex-lupie. I took plaquenil and wore sunscreen, took precautions in the sun, but I did not have a flare and rarely experienced any symptoms for 5/6 years previous to that. I stopped going to see a rheumatologist and just went for bloods as a precaution every six months.

    However, for the past 15 months I have been flaring on and off. I have had to take about 60 days off work in the past year and at times I have struggled to cope, physically and mentally. I see more of my rhuematologist and my GP than I do of close friends of mine and I really have been defined by my lupus over that time period. I don't know why I have flared so severely again and why it is not coming under control. Nothing significant has changed in my life - I have no answers and neither do my doctors. We cannot find a reason.

    I suppose my point in posting this is that it is great that you believe tumeric has worked for you, but sometimes disease activity comes under control anyway. I too went into remission (but I believe it was due to plaquenil), but sometimes people come out of remission and there doesn't seem to be a clear cut reason for it. There hasn't been in my case anyway.

    Take care,

    Nellie
     

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