Alternative Medicine and Treatments

[Tigger360]

So my girlfriend has lupus her meds help but with bad side effects im sure you all know to well.

Im trying to learn more about Alternative Medicine so I would like to hear anything that has worked for you or just made things a bit easier. It can be anything even if it sounds silly would like to hear it still.

I have heard about fish oil pills but my GF hasnt tried it and I once heard about bee stings for treating pain but dont know if thats good. So let me know I would love to hear your imput.

[canoe]

Hi Tigger,
I use herbs and diet to control my lupus.I am well educated in their use however and I think that your friend should be also before she attempts their addition. What area do you live in? Are they any naturopaths familiar with lupus?I am doing very well on my program. No side effects whatsoever and I do not take any conventional drugs at all. Not even an aspirin for over 12 years. So I know it can be done. Very best wishes. Canoe

[helloos]

Canoe may I ask where you got started on this? Did you see a specialist? I have done some reading, etc. and am so confused by the whole thing.

[jude mack]

Hi Tigger

I would be very careful with herbs, they can make your girlfriend sicker,if
you don't know what herbs are going to help.

Canoe I wouldn't mind knowing what type of program you are on, so far
any that I have tried have made me sick. So it is nice to hear frome some
one who is doing well on herbs. I am very intrested in herbs and would like
to know more. Thank-you.

Take care Tigger and I hope your girlfriend feels somewhat better soon.
Jude :flowers:

[Clare.T]

Hi Tigger

I moved your post from the Medications section to Complementaries because it is here that such discussion takes place.

I hope you will read previous threads and the pinned links.

I'd like to suggest reading the articles on this site written by Joanne, the site founder and owner, who is very knowledgable about complementary medicine.

http://www.uklupus.co.uk/compindex.html

Joanne also contributed to an excellent recent book called New Hope for Lupus Patients by Theresa Foy DiGeronimo, a Guide to Traditional and Complementary Therapies. It is available through the bookstore of this site when a contribution is made to help the running costs which Joanne meets from her own pocket.

Undoubtedly there are substances which can be used to complement conventional medicines but any substance that is taken orally might affect disease activity and interact with medicines.

Some people report flares after eating certain foodstuffs such as cheese.
Grapefruit juice should not be drunk with certain medications . People on blood thinners need to be careful about foodstuffs which will interact with the medicines by thinning the blood or 'thickening' it : cranberry juice and Vitamin K containing vegetables come to mind.

Numerous natural substances have blood thinning properties although they might be beneficial in themselves for healthy people or to relieve certain symptoms, they could be disastrous for people with lupus and associated conditions.

Natural does not mean not safe - any substance with a medicinal action can interact with others, natural or conventional, can cause side effects and can have contraindications.

One of the drugs most commonly used in lupus, the antimalarials group is derived from a plant, the quinine tree bark.
We are fortunate in that we can obtain a pure form of the active ingredients with no other chemicals, with assured dosages, without having to obtain plants of reliable quality and spend vast amounts of time preparing our own concoctions.

I take issue with the assertion that "no aspirin" has been taken when plants that contain aspirin like willow and meadowsweet, the origins of pharmaceutical aspirin, are being used. That is simply a different form of the same medicine.

Anecdotes are just that. Of the six women I have known with breast cancer, four died including two who bankrupted their families in the search for alternatives. One of them had neglected to seek diagnosis and treatment. The other two were successfully treated by conventional therapies and have remained in remission.

I'd like to suggest that we do not hear from people who tried natural therapies for organ involvement because they are dead. There are however testimonies here from knowledgable people who tried them to no avail. Those who have been treated highly successfully with conventional medications rarely post on forums because they have no need.

Lupus is a very complex disease, regarded as the mother of all autoimmune diseases and much remains to be discovered about the exact faulty mechanisms that cause its various manifestations. When a person says they have lupus what exactly do they mean, how is it affecting them.

I have a very different experience of my sort of lupus, compared with people who have the exact same diagnosis.

Responses and reactions to medications are very different too - what works for one person might be disastrous for another

It has to be born in mind that people can be misdiagnosed - one top lupologist said that 5% of the people referred to a major lupus centre did not in fact have lupus. One reliable site, fpnotebook, surprisingly says that lupus is very overdiagnosed in the USA - I don't know the grounds for that comment.

No reputable practitioner of any sort would dream of offering to treat any disease at a distance - it is unethical both medically and at a personal level and totally irresponsible. Would you accept treatment from a stranger on the street ? I think not.

Nobody on this forum or any other responsible forum is permitted to prescribe or diagnose or practise medicine through the forums, and many of us especially the health care professionals have disclaimers, as does the forum itself.

So please take great care before you start trying 'cures'. It is a minefield in a jungle out there. It could be your life at risk.

Find an experienced licensed practitioner or one who will work with your rheumatologist and inform yourself thoroughly so you can evaluate proposed treatments, just as we attempt to do with conventional medicinal options.

Investigate non medicinal complementary therapies such as stress reduction techniques, massage, reiki and so on and have a good look at your diet and general life style.

Wishing all Well

Clare

[Tigger360]

^Wow thanx that was very helpful ^

I definately need to read up some more

Thanx alot ;)

[rwb200]

thank you Clare
I loved your answer. You are very well informed.
Here is some experience we had with some " natural Therapy"
After several years of Lupus problems and little or no luck my wife was despearte for some kind of help.
We were told about a person who sold natural remeddies and how it could help anything.
We went to see the lady and had a very pleasant visit where she asked all kinds of questions of both my wife and I.
A couple of days later we were told she had completed the evaluation and just what we needed to help my wife.
We picked it up and my wife took it faithfully for sometime.
Did no harm that we seen but did 0 for help as well.
I have recieved many claims sent to me by 100 people that all had some item that would help and cure the ills of the world.
I have seen Coral that would cure every ailment the world had, tree bark that was the source of life, Algae that cured the world, and weeds that would do anything you wanted it to do.

I will not say that none of these have any benefit to anyone as some may.
I will say that if it seems to good to be true then it probably is and companies like this can make any claim they want to make and have little or no care about what it does to you.

I can say about anything I want in writing to get money and this is just what many do.
For instance if I say I'm over six foot and look like a combination of Patrick Swaze and Hulk Hogan ( Patricks looks and Hulks Muscle) and will sell a picture of myself for $90.00. If you get the picture and do not like what you got and found no resemblance to either of these people then all I have to do is say. Sorry I guess it don't work for everyone and is just a matter of opinion.

Won't believe my claims unless you read a Doctors opinion on it. Give me a couple of months and I can provide that for you. I won't say what they have there Doctorite in but they will be a legal Doctor of some sort and for a small payment will write about anything I ask them to write.

[sam101360]

Clare:

Well said and oh so correct! Although I will say that some proven supplements can and do help.

I take Omega 3 fish oil (Ultra Purified - to remove toxins like mercury and PCB's), and I have found, that with the proper doses and IN CONJUNCTION with my prescitption medications, I have less stiffness and pain than without the fish oil.

I checked with my rhumy before adding this to my daily regime to ensure that there would be no adverse interactions with my medicine and that he was OK with me trying it!

I suggest that everyone be very careful with what they choose to try, discuss it with your doctor and pharmacist, and if approved, introduce it very slowly to ensure you catch any side effects as quickly as possible.

Stephanie

[inky]

HI
I think everyones experience is different and so is our lupus. I would be wary of anyone offering a miracle, or of well-meaning friends who in their wish to cure you subject you to a lot of mad ideas they read in the papers or on the internet.

For me a very simple, balanced, organic and fresh food diet has been a real help - but it may not help another person in the same way

My rheumy has recommended Omega 3 fish oils (there have been studies which say they can benefit lupus sufferers) and I do find some relief from the arthralgia with it. Also i am much much better if I avoid sugar and refined food, but of course that is hard cos I get miserable and want sugar and cakes and chocolate and ..... I am trying sugar-free sweets just now.

I have honestly found that a diet free from processed and junk food, low in gluten and free from refined sugars is best for me, not a miracle cure but more energy. But so hard to stick to. I also take a multi-vit every day to be sure. I also stopped being vegetarian and my energy is much better now I eat fish and chicken. But I am not, in that, telling veggies to eat meat, it was my decision to try it on recommendation from a nutritionist and it worked for me. I also limit whole grains such as brown rice, wheat, and eat much less pulses than I used to ... my stomach has improved by skipping those.

I have been allergic to echinicea and st john's wort, both flare my lupus so I steer clear of medicinal herbs. I told a herbalist about the st johns wort but she obviously didn't believe me and a herbal prep of hers made me worse, she then said "it only had a small amount in!!!" some people oh well.

I have spent a long time trying to find the ultimate diet but have come to learn that diet may improve some symptoms (fatigue and pain) but IT DOES NOT GET RID OF LUPUS... and it puts a lot of pressure on people if they think it is something they are eating or doing that makes them ill. I still get cross when people tell me I should or shouldn't be doing something because it makes me responsible for this pig awful illness which is patently unfair, my sister who smokes, drinks and eats all the wrong food is a lot healthier than me.

Sorry about the rant... there are some strange radical vegtan foodie people in my partners family and they get me down at times.
INky
:tantrum: