Alternative Doctors and Medicine

[littleme]

Hi everyone, I am new at this and not yet diagnosed, however I have a friend that suggested natural doctoring, with a dr who has went to school for natural remedies and healing for the entire body and network........I am seriously thinking about checking this out......but want to know if any others have tried it.......I suffer with alot of aches and pains like we all do, and other symtoms, but wont get in to see the dr for another 10 days, to go over some of the lab and test results.......Any suggestions or thoughts would be appreciated. thanks :wave:



Littleme

[hannah1986]

Hiya I also think it's a good idea to also talk with your doctors about this I haven't had any luck with pain killers and my acupuncturist wanted me to try herbal meds to see if it works I've talked with my doctors about it they said it's worth a try but you have to be careful if you're taking other meds with it

[RosemaryP]

I do see a alternative doctor once a year. but she leaves things to me. Have seen a acupuncturist for quite some time one year, it did not help at all with pain.
I do take alternatives that do not upset the current medication I am on.
Wait for lab test results to come in and get a copy of them and show them to alternative doctor, with the list of medication you are taking.

[moon1706]

Hello all,

I'm very new to this site and have had a lovely welcome!

I live in the Uk and have recently been diagnosed with SCLE. I am seeing the usual experts, but I am also going to try a homeopathist who is also a practising doc.

I am anxious that the dr's in my area have such an overload of patients that the care for people with our condition is limited to about 10 minutes (what a joke eh?). I will obviously continue to see the derm/rheum but want to give this a go as well because of the mental symptoms e.g depression, anxiety, nausea etc.

Plaquenil has made me very sick so I'm hoping with continuous check-ups, I may be able to go drug-free.

I'll keep you informed.

Hannah, I think you should explore the possibilities. It may work for you or it may not - as long as there is no threat to your existing condition (just your wallet!!!).

I have been on a blood type diet since DX and have cut out certain foods. When I have eaten something I shouldn't I get a definite lupus reaction.

Be interesting to find out how you get on.

LOL :thumbs:

Moon

[andrushka]

Hello all :) I have tried a herbal alternative that many people use here and also abroad (I live in Romania) along with a diet given by the producer. After not being totally satisfied with the doctor I was seing here I went to Germany to a better doctor. There they did so many tests that I thought I couldn't posibly have anymore blood in me - they did tests of how my body respondes to different foods, teas, meds,... And guess what that tea I used to drink instead of making me better it killed the red cells in my blood. :angry: Oh...and the diet was totaly wrong for me. Now I have a different diet, different pills (including herbal ones good for my joints), different tea... and i have managed to reduce the dose from 30g of Prednison to 10g and totally give up the Imuran( I hated that stuff) and I feel perfectly ok.
So you have to be very carefull because we are not all the same. :luck:

[gladm]

Hi there.
I think if there was an alternative treatment to help us lupus victims, we would all hear about it soon enough. If a cure is found, I'll be the first in line. Let's hope we all stay well. love gladm. :love: :luck: :love:

[Sannie]

Hi there

I totally agree with Gladm on this one.

You are all behaving very irresponsibly if you think you can all cure yourselves with alternative therapies.

LUPUS CAN KILL YOU IF IT IS NOT TREATED CORRECTLY.

By all means try alternative therapies in conjuction with your conventional meds - but ONLY if your doctor agrees.

If you are not feeling better with conventional medications you need to discuss other options with your doctors.

Remember there are very few doctors out there who really understand lupus and all its possible complications so it is up to you to seek the good doctors out and get help.

Love
Sannie

[andrushka]

I just wanted to let u know that I am taking herbal things with my doc's approval, and not totally giving up to the normal meds :luck:

[Sannie]

Hi Andrushka

I seem to remember you have posted about this subject before and as we tried to explain to you then, herbal medicines will NOT help your lupus.

I find it very worrying that you have stopped taking azathioprine which is one of THE drugs used to treat lupus and similar diseases.

The fact you feel OK is because the medications have helped you - but that does not mean you should stop taking them without your doctors consent.

I find it alarming that you are not taking plaquenil which, again, is one of the first medications used to treat lupus.

It sounds as if you being completely ripped off by some doctors so do consider what you are being told very carefully.

Take care.

Love
Sannie

[andrushka]

Thanks Sannie, about Plaquenil ... I don't think it is given in Romania...I have never heard of it before reading your posts. And Imuran... the first doctor I went to also wanted to put me off it soon and reduce the dose of Prednisone. I have no organ involvment and no rashes so maybe that is why... The first dose of Prednisone I was put on was only 30 mg ...not 60 or 70 as I have read that some were put on... I was told that I have a mild form of Lupus and it was discovered very quickly. The new meds I take , well I take them while slowly reducing my doses of Prednisone which were going to be reduced anyway. Belive me I wouldn't do anything to put me at risk... I told u I tested my first herbal option and as good as it was said to be I stopped it when the tests were back. I want to do more tests sonn to see how I respond to the treatment... if there is any improovement (hope it is)
:luck: :thumbs:

[Sannie]

Hi Andrushka

What new meds are you taking? Who has prescribed them?

I am so sorry you cant get Plaquenil because it really is a wonderful lupus med that can help stop the disease progressing - and it is also one of the safest drugs they can prescribe for lupus.

Imuran is often prescribed to help you reduce the prednisilone. It is a 'steroid sparring drug' that is often prescribed to help you reduce the prednisilone dose - or to sometimes replace it altogether.

The fact you were diagnosed quickly and have been told you have a 'mild' form of lupus is all the more reason to do all that you can to stop it progressing.

Take care.

Love
Sannie

[Clare.T]

Dear Andrushka and all,

Andrushka , it is very unlikely that Plaquenil is not available in Romania although it probably has a different brand name.

The generic name is hydroxychloroquine sulfate. It is known as Quensyl in Germany for example and is certainly used in France , Spain and Italy.

There is no way of telling how any case is going to develop even if there are few symptoms initially but there is evidence that early effective treatment halts disease progress and gives the best chancer of getting into remission.

Many top docs suggest that people take the antimalarials at least two years, a therapuetic dose first, then a lowered maintenance dose even when there are no signs of disease.

Lupus is *incurable* and notoriously waxes and wanes.

People feel better stop their medecines get complacent and stop getting regular check ups for signs of disease.

People can be symptom free for years and then suddenly it rears its ugly head again., this time with maybe advanced kidney damage. There will be no warning symptoms of this until serious damage has been done.

I am sorry but the fact that somebody feels better at any one point has no significance to the patient group as a whole.

And the fact is that there is only have their word for it and no way of validating the claim.

If somebody is taking allopathic medecines along with alternatives or complements it's impossible to say what has they have benefitted from. Maybe they would have been fine taking nothing.

Anybody relying on alternatives to treat lupus is taking a very great risk.

It seems to me such a pity when these days there are so many treatment options, so many lives saved and made happy by medical advances, all the fantastic work of doctors like Sir William Osler who first realised that lupus skin lesions were associated with systemic disease and that anti malarials were of great help.

Why anybody should want to go back to the dark ages for health care, the most important aspect of life, is quite beyond me.

There are complementary therapies but there is no such thing as alternatives, no quick fix, as those of us who have suffered many years can assure you.

It would be irresponsible not to emphasis this in the strongest of terms

Please take the utmost care
Clare :flowers:

[marybri]

To Everyone considering alternative therapy:

I am not medically trained and would not try to tell anyone what they should or should'nt try in an attempt to help with this disease.
However one thing I do know for sure is that aalternative treatments DO NOT HELP.

Listen when others here who have had lupus for many years (I'm one dx 27 years ago)
try to explain the pitfalls and drawbacks.

THERE IS NO CURE

The only people these therapy's help are the ones who earn money from them.

Also as I think someones already mentioned many of these remedies are TOTALLY CONTRA-INDICATED with lupus medications.

Many of these "remedies" boost the immune system,which is the one thing you really don't want. Why do you think one of the main lupus meds is an immunosupressent???

Personally I would rather spend the money on some new clothes or some other treat
because I know that does make me feel better.

Sorry if any of you take offense to this,but it's something I feel very strongly about

Please be careful!!!!

Luv
Maryxx

[Sannie]

Hi Mary

I don't think anyone will be offended by what you have said because you have simply stated the truth!

Love
Sannie

[littleme]

Hi everyone,

I just want to say thanks for all the valuable feedback on this subject. I am new at this and will take the information given from people who have been there.......THANK YOU......I am glad I asked, otherwise one would never know.......thanks again...... :wave:

Littleme

[confused1]

I am so far from knowledgeable that it's not even funny, but I will tell you this: In 20 years as a daily, small town newspaper reporter, I have written more stories than I can tell you about "miracle cures" and "holistic cures" and "alternative medicine saved my dying child when medical science almost killed her." Pifflestuff. In all but one of those cases, I filed the information in the same file as the wonderful lady who had the face of Jesus in tea stain on her table and a con artist who had invented "perpetual motion." I did see one person who I believe had an absolute medical miracle. I believe such is possible. I also have interviewed folks who's miracle herbal/faith/holistic/dietary cure evaporated and they died "suddenly."
Since I was diagnosed, my family has sent me no fewer than six "cures" for lupus. One I know would kill me outright. The others might make me feel like I'm doing something useful, but no way would they cure me. And that energy worker that a good friend keeps telling me about who cured her liver failure with his wonderful hands ---- well, I'm really pleased for her.
All these wonderful people are angry at me for ignoring their sure-fire cures and continuing to be ill -- in their eyes by choice. Goody for them. My father's best friend was a homeopathic physician who treated my father's shoulder pains and nasty cough for years with manipulations and tinctures. Daddy died three months to the day after a required physical showed him to have widespread cancer of the lungs and bones. Enough said.
I do not mean to be offensive. If a cure works for you, I am so glad for you. I celebrate your health and your faith and your strength. I will write a story about you. I will not recommend anyone follow your course of action. Nor will I take tinctures, guifenisin in mega doses, shark fin, weird chinese mold teas or anything else. Prednisone is horrid. Plaquenil leaves me with a nasty taste all the time. And my other meds all have some drawback. But mostly they help and when I'm not bitching and wallowing in selfpity, I realize that I'm better than I was two months ago.

God bless modern medical science and even the pharmaceutical companies!!
Sunny

[Sannie]

Hi there

We have decided to close this thread to any further posts but leave it on the boards for others to read.

Sannie