Natural or Homeopathic Remedies?

[RCOSSIO]

Georgia,

I am glad you found this site, for me it has been a wonderful. I am sure you are as confused and frustrated as all of us are when initially diagnosed and the meds which helps us survive while making us loony as well. You will see that eventually some of us are able to change the medication. Currently I am on cellcept after being on Cytoxan for a year and just got back the result from my doc and it has been to say the least....Wonderful news!... as my numbers are back too normal and have been for the last 5 months. Yes chemically induced but little by little they are being reduced. Anyway good luck and glad you found us.

[Doug]

Hey, great news, Richard! Good for you!

[Cindy M]

Oh man, are you ever my new hero. I was telling Sangye that I want to now say that When I get better NOT If I get better, and after reading your response and questions about home remedies,etc YES there has to be a better way. I have been on so many drugs, 16 (5mg) preds per day 125 cyclophosimide per day, I had been on meth before but it didn't work, tomorrow I have to go the the hospital for an IV session for a new drug called Rituxan. With all these drugs I have still lost vision in my right eye, I have 3 masses behind it, bleeding from the eye because of the pressure and loss of hearing in my right ear. My sinuses are constantly bothering me and I am constantly coughing. So I agree that we need to find other ways to treat this disease.

[GeorgiaInOhio]

Oh man, are you ever my new hero. I was telling Sangye that I want to now say that When I get better NOT If I get better, and after reading your response and questions about home remedies,etc YES there has to be a better way. I have been on so many drugs, 16 (5mg) preds per day 125 cyclophosimide per day, I had been on meth before but it didn't work, tomorrow I have to go the the hospital for an IV session for a new drug called Rituxan. With all these drugs I have still lost vision in my right eye, I have 3 masses behind it, bleeding from the eye because of the pressure and loss of hearing in my right ear. My sinuses are constantly bothering me and I am constantly coughing. So I agree that we need to find other ways to treat this disease.

wow, i am so sorry for all the eye problems and sinus problems your having. ive had sinus problems for over a year and the docs told me that was probably the onset of the WG. i still have them too but not nearly as bad. i was having wierd problems with my vision when i first started on the pred.- things were blurry then clear, blurry then clear... i could just sit and watch it switch. my sinus's still bleed, I get nose bleeds now and then, and everytime i blow my nose of course, blood. and they get backed up constantly- constantly having to clear them out with saline. its the most annoying thing on earth. I do believe there are better solutions, and i do hope more people with this disease start asking more questions- and DEMANDING more answers! its hard to believe with all the advancements in so many other diseases, that this one should be any different. It seems like it takes a celebrity getting it before anything happens. Thats just sad. But if Magic Johnson can suddenly be AIDS free, Jenny McCarthys son is finally free of Autism, Even Montel who is still suffering from MS, has his own line of vitamins and a book about his eating plan and lifestyle that has helped him go on for so long and fight his disease, there has to be more out there for WG. I just cant accept living a life of jumping from one drug to another. if its what needs to be done NOW, then yes, thats what I will do, but my goal is to not just put this in remission, but rid it from my body. I believe this is not the body attacking itself, but a parasite or bacteria IN the cells that our immune systems just arent strong enough to continue fighting. We just have to find a way to combat it and build our bodies back up. There is always away. you just have to keep looking to find the answer.

[Sangye]

Millions of people have MS and autism, so that's where the research money goes. Research for common cancers is well-funded, but there is probably no more research on rare cancers than there is for Wegs.

On a positive note, new developments in the treatment of one disease can often help others. Weggies are the direct beneficiary of research done for transplant patients, and those with AI diseases like RA and lupus. Because of such research we have Cellcept, Rituxan, methotrexate, imuran and even cyclophosphamide.

For many years the only treatment was pred, which had a 50% mortality rate within the first year. Then came cyclo, which improved the mortality rate, but was too toxic to use long-term. All the other drugs are much better options, with far fewer risks. While I'd love to see more research specifically for Wegs, I'm grateful that so much "other" research benefits us.

My Wegs doc is a VF doc who does a lot of the Wegs research. I'm very grateful for his decision to specialize in our weird little disease.

[RCOSSIO]

Hopefully its as simple as that "a bacteria or parasite"...but I believe that your new BFF its not that simplistic. Hope is not lost though, my uncle was diagnosed with WG in 92 and the treatment then as it is now is similar. I too did not take anything other than aspirin or allergy medicine and was inflicted with WG. And although I hate taking the meds...it was either that or bye bye Richard. Hopefully, one day WG can be cured..but at least with WG...it can be contained and you can live a fruitful and long life, with a few aches and pain. And always remember to live in the 'NOW"

[Jack]

As Sangye has already mentioned, the drugs we take are available as a result of the work done on organ transplantation and we very nearly did not get these! The drug companies thought that they would never make any money from this obscure area of medicine and did not want to be involved. In the end, the idea was sold to them from the angle of the high publicity value of being involved in such "Gee Whiz!" surgery.

So in a way, we are very lucky!

Auto-immunity is now being investigated as the cause of many more conditions, so hopefuly we will catch some spin off from this work in the future.

[GeorgiaInOhio]

I have noticed just by searching the internet that more and more doctors are taking notice to auto immune disorders as they seem to be on the rise more than any other disease out there. I just ordered a book called the Auto Immune Epidimic that seems interesting. Im going to see if they mention WG in it. (It was a buck fifty on ebay, couldnt hurt!). But it gives ideas on how to eat better to lower inflammation and such as well-

Im also going to start seeing a Chiropracter, which Ive always thought were doctors that needed to be more appreciated- Medical Doctors are even starting to realize Chiropracters DO help us. I saw one several years ago- id had back pain ever since I was little (in a car accident and had pinched nerves, dizzieness, headaches) and just thought it was normal everyday life. About 8 months of 2 minute adjustments and some awesome vibrating tables and i havent had a problem since! Amazing! Now ive read that it can help with the nerve damage. So Im looking for one that can work with me with WG.

I didnt want to scare anyone when i started this thread, I was just looking for some good home remedies for some of the side effects. I know theres no natural cure YET. ive gotten some good ideas, and a few people of Private messeged me about some vitamins they take, or teas, and thats awesome. Thats what i want to get out of this.

Like I was saying in the beginning, I have this lotion I made that instantly takes away the nerve pain- and im still using it. ITs not a solution, but boy it works and withought it I would be in misery right now. i make it myself with organic butters and oils, so theres no chemicals- I know its safe, its good for the skin, and it works. By the way, if anyone wants some, please write me, Ill send you some. Its good stuff. ive been making lotions for awhile now, and mix up concoctions all the time for my friends for what ails them. lol. I have no problem with popping a little container of it in the mail for anyone on here who's got some bad nerve problems like me. ITs mostly mango butter which is good for inflammation and it soothes the "oh my god the wind is hurting my skin" feeling. LOL (that is the worst!) It takes away the sharp shooting pains too. Ok, but enough about that-

i just hope to find some good ideas for things of that nature. And ya, if by chance someones online and goes to their yahoo mail and suddenly a news bulletin pops up that its been discovered that the gauva juice really does work, dont forget to post that on here too. I doubt thats gonna happen, but let us know if it does. LOL

thanks everyone!

[Luce]

I apologise for reacting quite so strongly when you first posted, I just did't want you to do any more damage to yourself by not realising the severity of WG and the evil things it does to us.

Sangye recently suggested I tried some concentrated cranberry supplements and some probiotics to help with a slightly embarrassing problem caused by the antibiotic bactrim that most of us take. Unfortunately it was causing awful cystitis that was keeping me up at night due to the antibiotics killing off all bacteria in my digestive system, including the good stuff.

I have to say 2 weeks later and I'm enjoying some of the best nights sleep since being diagnosed, there's still an odd twinge from time to time but things are greatly improved. So I do believe that some natural remedies can ease the side effects of WG but there is nothing at the moment to bring it under control.

Sangye, I love you!!!!

[Sangye]

That's great news, Luce. I love you, too.