Natural or Homeopathic Remedies?

[GeorgiaInOhio]

Ok, here goes, Im posting it. I want to know of any Natural Remedies for any of these horrible side effects of the meds, the pain of the muscles, the vasculitus, the cramps at night, fatigue, breathing, sinus's- ANYTHING.

Ive been doing some research and have found a few things Im just starting to try. Boosting my Calcium with Highly Ionized Coral Reef Calcium to balance my PH levels. I take Garlic supplements (I just always have) for general well being. I just started taking Flax Oil to boost my Omega 3's and help absorb the Calcium and Vitamin D better and just to boost my immune system in General. I think all Auto Immune Disorders can be reversed with the right regimen. Does anyone else have any thoughts?

I know we have all been told that Prednisone and all these other meds are the only solution, but has anyone tried ANYTHING else? There has to be an answer. We have to find it.

Anyone have any suggestions for nerve damage or nerve pain? Thats my next step. I make my own lotions and massage oils with all Organic and Natural ingredients and believe it or not, have a lotion that really gives my nerve pain in my feet some instant relief. Its amazing. A good friend of mine mixed her special blend of essential oils (which I call her nerve tonic) and I made a massage oil I use once a day and it has helped with the pins and needles. These of course arent cure all's but they do help. Does anyone have any other home remedies or found any research on things to at least EASE some of the side effects we are all going thru?

Im just curious. The more I research, the more I will share. Im on a mission I tell ya. I refuse to spend years on these medications to only find out WG has come back again. I just cant take it. There has to be a better way! I cant spend the rest of my life feeling like Quazimoto. I just cant.

So Im open for suggestions and comments. Please be nice!

THANKS!

[Jack]

I think you should read some of Sangye's posts on this subject.

It took a long time to come up with the Steroid/Immunosuppressiant treatment and before that everyone died. The danger of experimentation is that Wegener's causes permanent damage which can be fatal. Get it wrong and there is no going back!

[Luce]

PLEASE don't take anything to boost your immune system!!! The problem with Wegs is that the immune system is overactive and running riot - things like pred and Cytoxan are immune suppressants which is what this disease needs. Your immune system is malfunctioning and needs to be stopped, not boosted.

Sangye will provide more information I'm sure but please stop taking anything that promotes a boosted immune system, these supplements are just not for weggies.

[Sangye]

(I discussed some of this under "My Roommate and I" the other day. Other posts, too, but I can't find them)

Georgia, believe me, I understand your frustration, fear and anger and being on these drugs. Before I got Wegs symptoms I was extremely health and strong as an ox. I rarely took aspirin, didn't have an MD, and my health care was well-managed exclusively by my fellow holistic docs.

For the year before I was dx'ed, I was nearly crippled with pain. We treated it with increasingly powerful holistic remedies, including immune boosting and regulating supplements. However, it greatly accelerated my decline and I was nearly dead by dx.

Holistic medicine can treat many other auto-immune diseases, like MS, RA, UC, etc.... None of them are deadly, none do silent damage. There is ample evidence of holistic-only treatment of them, and even cures if they're found early. None of this is true for Wegs. It will do silent damage, it will kill you. My holistic docs and I did exhaustive research and cannot find a single case-study where holistic treatment of Wegs is even mentioned. Take home message : You cannot extrapolate info about other AI diseases to Wegs.

You can use holistic treatments as a support, though. I believe getting regular chiropractic adjustments and acupuncture are essential. The docs must understand that they can't do anything to directly stimulate the immune system. Following an anti-inflammatory diet is excellent. Some supplements are fine, but be careful with those that are both ant-inflammatory and immune-boosting. Garlic is one. I suggest you decrease it to a minimal dose, or just use it in foods. Using something like garlic can lock you in a vicious cycle that keeps you on the drugs longer. It boosts lymphocytes, and the Wegs drugs work by decreasing them. You can't get off the drugs because the Wegs isn't being controlled because your supplements are preventing the drugs from working, etc....

Flax oil and fish oil seems to be fine, but don't overdo it. Be very careful with Vitamins A and C-- both immune-boosting. You need them, of course, but keep them lower. I avoid things like echinacea and goldenseal--potent immune-boosters. Certain essential oils boost the immune system. Coral reef calcium is one of those fad supplements that will only empty your wallet. The best form of calcium is calcium lactate. Second best is calcium citrate. Being on high-dose pred, your pH is nearly impossible to balance. There isn't much you can do until you get to lower doses. Take your calcium, eat healthy veggies and just get through the initial period.

I was just reminded of the necessity of suppressing my immune system. I saw an excellent chiropractor last week for the first time. He immediately understood and accepted the "limits" of treating me. But we overstimulated my immune system by working on my adrenals,and the Wegs increased markedly withing 12 hrs. I've been in awful pain since. It was accidental. It takes some trial and error when you begin treatment.

As far as worrying about being on drugs for years, that hasn't happened yet! You need all your strength to deal with what is happening NOW. Right now you need the drugs. You won't always be this sick.

Relax your mind about the future and try to accept the present. VERY hard to do on pred! It makes you want to fight and take on dragons. Now is not the time for fighting. It's the time for being gentle with yourself, for having compassion for yourself, and for giving your body the time it takes to heal.

[Jack]

Well put Sangye.

[Terri]

Please take care of yourself Sangye because I need you the rest of my life!
I just came back from being in Ohio for 4 days. I enjoyed the trip but was glad to get home. My sister-in-law tells me that I dwell too much on this disease.
I was telling her about this wonderful support group on the internet and all the info I've gotten from it and she feels it's not helping me.
It is so hard to explain what we go through. Of coarse, she is the type of person you can't argue with anyway so it wouldn't do any good.
Hope everyone out there is having a good day,some day.

[Doug]

Please take care of yourself Sangye because I need you the rest of my life!
I just came back from being in Ohio for 4 days. I enjoyed the trip but was glad to get home. My sister-in-law tells me that I dwell too much on this disease.
I was telling her about this wonderful support group on the internet and all the info I've gotten from it and she feels it's not helping me.
It is so hard to explain what we go through. Of coarse, she is the type of person you can't argue with anyway so it wouldn't do any good.
Hope everyone out there is having a good day,some day.

WG is our lives in a very big sense. We always have to be looking at it straight in the eye so it doesn't get a jump on us. Only you can say if this support forum is useful. Family or weggie, we are in it together.

[Deanne Hull]

that is an amazing piece of advice and shall copy and paste and send it to my family, thank you!!!!

[Sangye]

My advice is to be careful who you get advice from. You can do great damage to yourself by relying on internet info that anyone can post for a profit. There's a reason why it takes as long to become a holistic doctor as it does to become a medical doctor. It's every bit as complicated. I suggest you consult with one to get proper, individualized care.

[JanW]

I agree with Sangye, and also think that whether something can be treated naturally or not really isn't the issue. It's not as though there isn't treatment for this disease -- the choice isn't between unproven supplements and treatment with medications that cause tons of side effects or damage quality of life. There are many WG patients who have a high quality of life while at the same time taking immunosuppressive medications. I know that one of the hardest things as a new patient may be to realize that you need to be medicated for life, but it is better than the options for WG patients 40 years ago for sure.