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GeorgiaInOhio
08-03-2009, 02:28 PM
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. :D Please be nice!

THANKS!
:p

Jack
08-03-2009, 04:20 PM
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
08-03-2009, 08:45 PM
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
08-04-2009, 01:03 AM
(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 (http://www.immunesupport.com/news/92fal992txt.htm). 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
08-04-2009, 02:04 AM
Well put Sangye.

Terri
08-04-2009, 11:49 AM
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
08-04-2009, 01:35 PM
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. :)

Carol
08-04-2009, 08:38 PM
Hi Georgia,
I did some research on nerve damage in my feet. I found an American product called Nerve Support formula produced by WSN Wellness Support Network(Google it). It contains B1 and B12. So I imported it and tried it after speaking to another Australian who spoke highly of it. I've had a go at taking it for a month and then stop taking it for a break. My feet are slightly numb now but there is no pain anymore. The worst thing about taking it is that your urine smells strong but it's a small price to pay. Anyway do your own research on this product. I'd be interested to hear if you decide to try it. I need to buy some more and do a couple more months. Regards Carol

Terri
08-04-2009, 11:17 PM
Thank you Doug for your support.
I was just venting. I do that from time to time and more often than not.
I do know what this forum does for me and it's the closest thing to therapy that I'll ever have. As far as family and weggies being in this together......
My family just doesn't seem to get it so I want to thank all you weggies out there who help me make it through my day.:)

Sangye
08-04-2009, 11:21 PM
Terri, you bring up a good point. I struggle with Wegs taking over my life--not just outwardly, but inwardly. Not having been able to work for 3 yrs or do as much out in the world hasn't helped. As we all know, Wegs can make you feel isolated in the world because you don't meet anyone with it, and no one around you understands it.

That made me kind of "grab" people around me and need them to understand me. Of course they either couldn't or didn't want to, or just plain didn't like the feel of that neediness! So it pushed them further away. So I did it more! Finally, I started to see the fruitless pattern and I discovered this group. Just knowing that you all understand, I was immediately able to relax that neediness with others in my life.

Now I can talk about Wegs with my friends and not be that concerned if they "get" it or not. Without that undercurrent going on, we talk a lot more about other things. I guess that's why support groups exist, huh?

No one but you can decide what is right for you. I always say, "As the owner of the body in question, I get to make the decisions." :D

And you take care of yourself, too. We need Terri in the world. :)

Jack
08-04-2009, 11:39 PM
This Forum is a great place to vent all your Weggie thoughts!

I am so aware of how much my family are all affected by my condition that even my daily report of how I feel is a bit of an imposition. I'm sure that they would much rather not be reminded that anything is wrong. I know that I can say anything I like on here whether I'm having a good day or not and someone will understand. I might even be able to pass on some information that will help someone else.

Terri
08-04-2009, 11:54 PM
Thank you Sangye for making me feel important and Jack, yes you are the one I would look up to for advice anytime.
There's a song something about "when we all get to heaven"....
I believe that there will be a weggie room just for us. Wouldn't that be great??
Everyone on this forum has been so helpful in everyway.
Right now I need to get my butt in gear and get my day started.
I wish everyone well and God Bless.:)

Doug
08-05-2009, 03:06 PM
[QUOTE=Terri;4308]Thank you Sangye for making me feel important and Jack, yes you are the one I would look up to for advice anytime.
There's a song something about "when we all get to heaven"....
I believe that there will be a weggie room just for us. Wouldn't that be great??
QUOTE]

I remember a sermon once where my pastor made a sweeping gesture with his hand and said: "Look around you. These are the people with whom you will spend eternity!" I remember my reaction: "Oh, God, no!" Ha! So much for that. Not prosyletizing here. Just telling a funny story (I think) at my own expense.:p:o:mad::rolleyes:

GeorgiaInOhio
08-05-2009, 10:46 PM
I appreciate all the replys, and I understand where everyone is coming from, but I do believe there is an answer to every question and that answer can be found in the foods we eat, the earth around us and natural products. I just think this disease is so rare, and so few people are diagnosed, that not enough research is done and not enough questions are asked. There is a cure, theres a cure for everything. Even Cancer. Just not everything has been found.

I know alot of people have just accepted that this is something you have to live with and deal with, and yes, that is true, but you should never give up researching and trying to find a better solution. There is always a way. :D

I let my doctors know every single thing I take, and although Ive researched alot of supplements, I dont just jump into taking them. Anyone can tell you to take something, but that doesnt mean they know what they are talking about. My best friend is in college right now for homeopathic medicine, and believe me, she has tried to get me to take a million different things, has every idea in the book, but Im not going to just start popping herbs and supplements and seeing which one sticks to the wall. lol. Really I was just looking for some ideas on some remedies for the side effects, the ailments, all that good stuff. I know no one has a cure or it would be all over this board!

My doctors have assured me thought that the garlic is fine, and the most its going to do is give me worse acid reflux. The things about the immune system- well thats another story. Ive talked to them about that, and they dont seem to have a problem with doing what I can to boost my immune system. Ive been told that the drugs are there to, yes, supress it, but you have to also boost your immunity and rebuild your sytem. The drugs supress the disease. If you kill off your entire immune system, THAT will kill you. Why else would we be told to eat healthy? Healthy food boosts your immune system. you have to replace the bad with good. At first, I read that Alpha Lipoic Acid helped with alot of cell regineration, and boosting immunities so I got a small bottle, took it to my doc, she said it should be ok. I took it for a week. Did some more research, and although I dont think its going to do harm, I dont think its the right thing to take RIGHT NOW. It also takes toxins and tries to illiminate them, but by doing this it passes thru your brain and cardio system some how- I dont remember now, but has something to do with the blood flow- and I just dont know if I want the drugs, the disease, and any toxins I have being pushed farther into my lungs, my blood, you know what I mean. So I stopped taking it.

Now I just stick to the Vitamins, flax oil, calcium and eating healthy. I do believe alot of this is based around inflammation. I also have lipitin resistance, have had it for years, and my body has always had an inflammation problem. I think that could have been what set it off. Eating healthy, then throwing it out of whack eating bad, then back to eating healthy- I just dont believe my body could handle it anymore.

I appreciate everyones concern, I really do. Its great to have a "family" behind me who has been there and knows whats going on. And trust me, I dont just jump on fads and try everything. I let my doctors know before I do a thing. They know everything Im taking, down to the name brands of the calcium and vitamins. There is a holistic doctor right by me im going to call just to see if he has even HEARD of this. I wouldnt even talk to someone who didnt. But its just not in me to accept that there is no other solutions. I just think they havent been discovered yet. If you accept there are no other options, thats like your saying your just waiting it out until it kills you. I cant do that! Theres new research and info being found everyday, so tomorrow, you never know, tomorrow may be the day someone says hey, "drinking lemonade everyday will cure wegeners!" lol.

you just never know. ;)

Doug
08-05-2009, 11:04 PM
Georgia-

There is a delicate balance doctors work to achieve where your immune system is suppressed, but not too much so that you aren't producing the right amounts of red and white blood cells to survive. Been there and survived that! As long as your doctors are aware of what else you are doing to improve your condition, and they give you the go ahead, we shouldn't worry so much about you on this forum! :) (p.s. lemonade as a WG cure: Mmmm! Of course, some drug company would research the exact dosage that worked best, patent the recipe, and charge us exorbitant cash for it.) :)

Jack
08-05-2009, 11:23 PM
Sorry, but I would not trust most doctors to know what is good for you or otherwise. The Teaching Hospital that I attend has a whole Vasculitis research department and even they seem to be in the dark most of the time!

I know that you are being careful and taking all the precautions you can and I fully understand your desire to avoid drug side effects, but if you make a mistake it may be permanent.

GeorgiaInOhio
08-05-2009, 11:28 PM
Sorry, but I would not trust most doctors to know what is good for you or otherwise. The Teaching Hospital that I attend has a whole Vasculitis research department and even they seem to be in the dark most of the time!

I know that you are being careful and taking all the precautions you can and I fully understand your desire to avoid drug side effects, but if you make a mistake it may be permanent.


Im being careful, I promise;) im not adding anything until i have a garauntee its safe. so good food is my best option at the moment. :p

GeorgiaInOhio
08-05-2009, 11:29 PM
Georgia-

There is a delicate balance doctors work to achieve where your immune system is suppressed, but not too much so that you aren't producing the right amounts of red and white blood cells to survive. Been there and survived that! As long as your doctors are aware of what else you are doing to improve your condition, and they give you the go ahead, we shouldn't worry so much about you on this forum! :) (p.s. lemonade as a WG cure: Mmmm! Of course, some drug company would research the exact dosage that worked best, patent the recipe, and charge us exorbitant cash for it.) :)

ya no kidding, theyd call it weggie juice and say it was the miracle cure, only $129.95 for a 8oz supply! lol

Doug
08-05-2009, 11:36 PM
Sorry, but I would not trust most doctors to know what is good for you or otherwise. The Teaching Hospital that I attend has a whole Vasculitis research department and even they seem to be in the dark most of the time!

I know that you are being careful and taking all the precautions you can and I fully understand your desire to avoid drug side effects, but if you make a mistake it may be permanent.

In my case, the doctors most involved in my treatment were at a teaching hospital, where weggies were studied (as was I). I'd not really thought about all doctors not being equally qualified to judge best treatment or best self-care since that wasn't an issue with me. Point well taken, Jack.

Sangye
08-06-2009, 01:13 AM
Georgia, there's a big difference between acceptance and resignation. Acceptance also does not mean hopelessness, not researching, or waiting to die. It took me a few years, but my therapist finally got it through my head. As I thrashed with it and refused to accept Wegs, she'd say, "I'm not asking you to love it or want to keep it or stop praying that it goes away forever. I'm asking you to find a way to be with it. Because it's here, and you're trying to be everywhere else--in your past or future. That keeps you locked in conflict, exhausting your energy supplies. Battling against yourself and the world can only make you sicker." My current therapist says, "How about if you learn to float instead of fight?" Even though Western society tells us the opposite--to fight like hell-- the less I go to war over Wegs, the stronger I've gotten. Eastern philosophy is so different. You won't find an acupuncturist that says, "Fight this with everything you've got." They'll tell you to relax your mind and your body will follow. ;)

While it's good to tell your MDs what supplements you're taking, they have no training in nutrition other than the Food Pyramid, and certainly none in clinical nutrition. Even with my mind totally muddled by Wegs, fatigue and drugs, I can still talk circles around my MDs when it comes to the biochemistry and physiology of nutrition. I don't mean that to sound boastful-- it only reflects their complete lack of training in that area. It's like asking a dentist for legal advice. It's just not their area of expertise.

So if an MD tells you garlic supplements won't interfere with Wegs treatment, it's because 1) s/he is only considering drug interactions (eg, St Johns Wort famously interacts with many drugs), and 2) s/he hasn't got a clue about its mechanism of action. Garlic specifically boosts lymphocytes. Immune-suppressing drugs suppress lymphocytes--aka T cells and B cells. This Wikipedia summary (http://en.wikipedia.org/wiki/Immunosuppressive_drug) offers a good explanation of how the drugs work.

The point of Wegs treatment is not to destroy the immune system, it's to suppress it enough to make it stop attacking one's own body. This is why they often need to change the drugs--from a stronger immunosuppressing agent, to a weaker one, or vice versa. If an MD told me "Go do everything and anything to build your immune system" I'd get out of there fast. Even my lousy first rheumy knew better than that. Eat healthy, yes. Take "safe" supplements, yes. Completely rebuild my immune system, no.

BTW, when you talk to holistic docs, don't hang up if they don't know Wegs. I've almost never run into an MD (non-rheumy) who remembered it, either.

I hope this info helps. Reading your posts it brings me right back to how I felt when I was first diagnosed. Take good care of yourself. :)

RCOSSIO
08-06-2009, 12:20 PM
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
08-06-2009, 01:17 PM
Hey, great news, Richard! Good for you! :):):):)

Cindy M
08-06-2009, 01:54 PM
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
08-06-2009, 06:42 PM
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. :o

Sangye
08-07-2009, 12:05 PM
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
08-07-2009, 12:23 PM
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
08-07-2009, 12:53 PM
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! :rolleyes:

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
08-07-2009, 09:46 PM
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
08-08-2009, 01:11 AM
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
08-08-2009, 02:11 AM
That's great news, Luce. I love you, too. :)

jola57
08-09-2009, 12:47 AM
Hi Georgia, It seems you had quite a strong reaction from us to your homepathic self medication. I am sure you gathered that while looking for all available remedies, we strongly belive in regular treatment of the known concoctions of drugs. Heed what Sangye says. She knows best being a chiropractor and having her homeopathic friends try every immaginable to them remedies to help. sd you know it simply did not work. Wegs is not like other immune diseases because it affects us each very differently, i would even say that it targets our individual soft spots. This is why research and treatment is still so far off. We have among us limited wegs and ones that totaly debilitate and is life threatening. Kidney failures, tracheal stents, intercranial pressure just to mention few of the worst. Only a regiment of cyclophosphamide and prednisone with lesser other drugs WORK. No other supplements, drugs or other miracle cures are out there. People have always prayed upon less fortunate ill people by offering cures for sale making money of others misery. Don't get pulled into their web. It iwll cost you money and you will not get a thing back. Unfortunately this is one disease where placebos do not work.
Having said all this, do take safe supplements, and use your ointment for nerve soothing. Just to not expect them to give you a cure. Doc's do not know much about homeopathic medicine and as Sangye said, will only advise you not to take drugs that strongly interact with medical drugs. So listen to Sangye and her advice, thru her schooling and personal experience she is a wealth on knowleadge.

Just think, all the drugs you are taking are for suppresing your immune system How can supplements boosting immune system help? It would just not make sense.

Keep well, take supplements as your body tells you and listen to how it reacts. If you feel better keep doing what you are doing. It may just be that you are a lucky one and with your limited involvement wegs it works. Just be careful.

ps: pred gives all of us blurry vision, like tearing up and then clearing and than tearing up again for me it is just occasionaly.

RCOSSIO
08-09-2009, 01:17 AM
..and if I can make one more recommendation for natural cures...please don't play "Escape the Room"...it will absolutely stress u out and ask Luce, Sangye, aaaaaaaaahhhhhh and Andrew. We're stuck in this stupid room and need help getting out. Maybe Luce can provide some of that cranberry cocktail that Sangye so gratefully shared....:eek:

jola57
08-09-2009, 01:20 AM
Where do you think I was the past week, Stuck in the room.

Sangye
08-09-2009, 01:23 AM
SO funny you guys. :D:D

I think The Room needs a colonic.

jola57
08-09-2009, 01:24 AM
Don't remind me I'm due for one for over 5 months:eek:

Doug
08-09-2009, 03:20 AM
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.

Anyone who had plasmapheresis is the beneficiary of all the money Jerry Lewis raised for Muscular Dystrophy Association: MDA research helped bring that therapy about.

GeorgiaInOhio
08-09-2009, 06:44 AM
I havent tried "escape the room" and maybe i wont. lol. i easly become sucked into things, and I dont need something else taking up my time! LOL. mobsters on myspace wasted about 3 months of my life last year. maybe thats what gave me WG. LOLOLOL

Id like to hear more about this cranberry stuff and probiotics sangye if you have the time. That bactirum is evil. lol. if it works, that would be fantastic.

Im sticking to the remedies for things that ive tried to search out that dont have alot of people with complaints. so far ive been lucky and only got stuck with one that i didnt like, aloe vera juice. horrible stuff. i couldnt even give it a try its so horrible. at least it was cheap. it was supposed to help with free radicals and i think help with the vasculitus or something. id rather stick with the lotion. lol. blah!

im still on a mission tho. i know the drugs are the only thing right now that supress the WG itself, which is why i havent went all out to the homeopathic doctor that is trying to convince me I NEED HORMONES! WHAT! ya, tell me about it. They want $150 to tell me I should be on Hormones. Ya, that was a free consultation that will never get a sign up. LOLOLOL. Good lord. Thats one to mark off the list of honest doctors, I sware. Anyway, maybe ill vent about that in another thread. Idiots who try to make money off the sick... (your right, they do prey on us. Thank god we have sense.)

I was wondering about probiotics tho. Since we are taking antibiotics, I didnt know how that would work. I love this drink, Kiefer- Ive always loved it. Its like a yogurt smoothy, full of probiotics. I quit drinking it because of the sugar, but my blood sugar has been fine, amazingly. So I was hoping I could ad it back in, but didnt know how that would work. I love probiotic things. LOL. So educate me Sangye! PLEASE!!!

Oh, I also made a new friend at the local farmers market. She makes an amazing foot soak out of all organic herbs she grows on her farm! FANTASTIC! Oh my! If I can decipher what she puts in it, i will share he secret with you all! Darn her not listening each herb so everyone can make it and she wont make money! GRRR! haha. smells good too. But I highly suggest looking for an all natural, organic tea soak for your feet if you can find one. Oh my! seems to help with the nerve pain too, very soothing and calming. Even softens the skin!

Ok, gotta run. Just thought Id pop on and see what my new family was up to!

ta ta for now!

Jack
08-09-2009, 06:57 AM
I tried probiotic for a few weeks some time ago and could not detect any change. Very disappointing :(. I suspect that the continuous use of antibiotics may be killing it off as fast as I can take it. I did try stopping the antibiotics for a while, but immediately got a chest infection :mad:.

Sangye
08-09-2009, 07:25 AM
It's very difficult to get ahead with probiotics when you're still on antibiotics, but it's possible.

The key things with probiotics are :
1) Take a decent brand-- mid-priced-- because cheaper ones don't guarantee adequate numbers of viable bacteria So you're paying for a bottle full of dead bacteria! I like the brand "PB-8" because it's mid-priced,easy to find in health food stores everywhere, and reliable.

2) Take it only on a very empty stomach. That means 45 minutes before a meal, or 2-3 hrs after. If you're on antibiotics, take it as far away from the drug as possible. Middle of the night is great, when you get up to go to the bathroom. If you take it with food they'll be killed by stomach acid.

3) Take sufficient amounts. At least 5-7 billion (bacteria) each day. If you're on antibiotics, consider increasing it accordingly. For example, if you're just on single strength prophylactic Bactrim, increase it by 30%. If you're on full-dose daily antibiotics daily, double it.

4) Take it long enough. Stay on probiotics if you stay on antibiotics. If you stop antibiotics, stay on probiotics for minimum 6 weeks. The longer you've been on antibiotics, though, the longer it will take to normalize the gut.

The first change you'll probably notice is in the consistency and odor of your poop. (Sorry! :o) If it's loose, it'll firm up. If it's stinky, it'll stink less. You'll probably also notice less bloating, gas, intestinal rumbling, etc....

Eating plain yogurt or other fermented foods also helps restore the flora. Yogurt, kiefer, etc.. with sugar are counter-productive. If you get fermented foods like sauerkraut, make sure they haven't been pasteurized, since that kills bacteria.

When she was alive, my Greek grandmother used to make yogurt that would probably cure any of our guts on contact. :)

GeorgiaInOhio
08-09-2009, 07:47 AM
Awesome, thank you! I will look for the PB-8 on Monday when I go back to the Organic shop. Im on the Bactrim 3x a week, I guess that is just the normal dosage? I will stay away from the Kiefer, I dont think I even realized before how much sugar was in it until I got WG and had to watch the sugar. I always eat plain non sugar yogurt, so that is good. And if my poop gets better, HALLELUAH! You are a miracle worker. LOL Anything to ease that and the other things. lol. I will have to start searching for fermented foods now as well.

Ive been getting up in the middle of the night ever since I got out of the hospital anyway and the last 2 nights found myself searching for a snack to stop my hunger pains. Its ridiculous. So now Ill just work in the probiotics with some water and get it to work! woooo hoooo! Thanks so much Sangye!

Im sorry they didnt work for you Jack. Im also afraid to stop the antibiotics because of catching something. The vasculitus in my feet is still bad enough that I have broken skin, and scabs that just wont heal. I have to soak my feet twice a day and put Bacturim ointment on them in between. Im afraid if i stop the antibiotics ill be a walking soar! ah! So I feel for ya. :(

These are great ideas though. I truley appreciate everything, everyone! I need to go print out your instructions now sangye! Thanks again!

Jack
08-09-2009, 08:06 AM
I take Co-Trimoxazole (Bactrim) every day so suspect that I have little gut flora left now. I think I'll have another go at the probiotic following Sangye's tips. Thanks! :)

Have you noticed that even after all these years I'm still messing with my medication? I guess I'm still searching for the perfect solution.:confused:

Luce
08-09-2009, 08:32 AM
My poop is lovely now, won't dwell on the subject too much but it's how it should be now. I will warn you that for the first week or so things were a little shaky and the worst side effect was considerably increased gas. Now however things have calmed down into a very agreeable mix which I am really enjoying. Not sure how much the cranberry is helping but it's not hurting and is cheap enough to keep taking.

Jack I bought L.Acidophilus from Holland and Barrett and take 2 before bed every night - one wasn't enough and the label did say 1-2 a day.

Richard, you really don't want this cranberry cocktail - it would make the room smell very funny for a while and I didn't spot a bathroom in there.

Sangye
08-09-2009, 08:36 AM
Jack, I think you've been at this so long you know how to mess with the drugs as well as your docs! You do get a better feel over time, even when you don't feel better over time. :D

Luce, SO happy to hear about your improved poop! It was probably more of a flora imbalance than a lingering bladder infection if the probiotics improved things so much. You can stay on the cranberry daily or decrease to several times a week as a preventative. Maybe if we used the cranberry cocktail in The Room and stunk things up a bit, we'd do a better job of finding a way OUT!

Cindy M
08-09-2009, 02:24 PM
Thanks, I spent Thursday at the hospital in Out Patient ward at the hospital getting Rituxan by IV. I am hoping this improve things. I have another session on Aug 20th. I have been reading quite a few of the responses regarding the boosting of our immune systems. With Wegs it sure seems like one wrong step and there is no going back. I do believe that there is more we can do for ourselves but I also believe that too much is not good. I have to be honest and say that I have never been one to take alot of vitamins, etc so this is all very new to me. A co-worker and I used to joke at work that when people would sneeze around us that we would hope to catch the cold or flu just to have a few days off. Man, how I would like to turn that around now.

RCOSSIO
08-09-2009, 08:40 PM
Thar deserves a "LMFAO"...Sangye you can always reference NetLingo The Internet Dictionary (http://netlingo.com/) for further clarification. Hahaha..thanks Luce for the cranberry cocktail and room...IT WOULD HAVE NOT BEEN GOOD AT ALL!!!!!

GeorgiaInOhio
08-10-2009, 02:02 AM
Hey Cindy, Im so sorry to hear you are having problems. I hope things get better! Im sticking mostly to eating healthy instead using supplements. You usually cant go wrong with good food. As much as id like to believe there is a cure in a magic vitamin or mystery herb, I dont know how my body reacts to things enough yet to go and mess with it. Jacks a pro by now, so maybe after I figure things out more I can try something new here or there if the doc approves.

Sangye, omg, my friends and I have this personal joke that all our conversations eventually lead to poop! LOL so this is really cracking me up. Im making a trip to the health food store today to look for the PB-8. So is the Cranberry juice just for bladder problems then? Im confused. and is the PB-8 a name brand? lol. sorry, im blonde. Im going to look anyway, because the poop needs to be resolved. lol.

Im having an issue too, im gonna start a new thread about tho to get some feedback from you guys, so watch for it. :D love you guys!

Terri
08-10-2009, 05:05 AM
I don't want to get off the subject here with this thread, so I'll just say I came through your town today Sangye and if I would have had more time I would have looked you up and we could have had a cranberry cocktail.:D
My husband and I went to Va. over the week-end and we always pass through or close to Baltimore. Not sure where you are at but maybe someday it wouldn't be impossible for us to meet. Think about it.:cool:

Doug
08-10-2009, 05:29 AM
I don't want to get off the subject here with this thread, so I'll just say I came through your town today Sangye and if I would have had more time I would have looked you up and we could have had a cranberry cocktail.:D
My husband and I went to Va. over the week-end and we always pass through or close to Baltimore. Not sure where you are at but maybe someday it wouldn't be impossible for us to meet. Think about it.:cool:


Do it! Do it! Do it! It is such a satisfying business, this meeting another weggie. Photograph each other, have someone make a video if you don't have a video camera. Give us a record! And tell us all about it! Lisa Coffeelover may beat us all shortly by meeting Duane in Rochester, Minnesota, home of the Mayo Clinic (and Duane's job!):):)

Luce
08-10-2009, 05:54 AM
Georgia - as far as I know Sangye recommended the cranberry for my bladder problems, as it's good for the changing the pH of urine. Not sure if it has any other benefits and I wouldn't know about the PB-8 as I think it's an american product.

Sangye
08-10-2009, 06:50 AM
Terri, I don't live in Baltimore, I just go there for Hopkins. I live 1.5 hours away (1 hr without traffic!). I'm in B'more all the time, though, so it'd be easy to meet!

As far as I know, cranberry is used primarily for urinary tract health. Keeps bacteria from adhering to the walls, preventing/treating infections. Berries are so rich in antioxidants, though, I imagine they'd be good to consume in general.

Georgia, I was a Peace Corps Volunteer in Africa 20 yrs ago, and we talked about poop all the time. Holistic docs always talk about poop, too, so I guess for me, it's just like talking about the weather! Glad I made you giggle. It sure helps to laugh.

crackers
08-10-2009, 07:29 AM
ah sitting around the camp fire talking about poop.what golden memories.:D
john.

jola57
08-11-2009, 03:35 AM
Well since we are on the subject. for the past 2 months it is gloriously yellow orange so me thinks my gall bladder has stones or liver problems developed. there is some pain in my right side as well. I am so not looking forward to more operations. I don't know if I should wait or consult with my family dr since I just started on mtx yesterday.

Sangye
08-11-2009, 03:39 AM
Yikes. You should get blood work ASAP. Yellow poop + mtx is a bad combo.

Meanwhile, beets are a very good way to increase bile flow in the liver and gallbladder. Sometimes that will do the trick. (They won't move gallstones, so no worries there.) You can eat them, drink beet juice, take beet juice supplements, etc... It all works the same. Don't overdo it-- you don't need much, and you don't want to throw off your blood sugar.

Jack
08-11-2009, 03:40 AM
I really think you should mention this to your doctor. You have to nip things in the bud if you have Wegener's before permanent damage sets in.

I do sympathise with your attitude. Sometimes, the symptoms come on so thick and fast that it is too much trouble to persue them all.

Doug
08-11-2009, 04:02 AM
YouTube - Birmingham is not Liverpool (http://www.youtube.com/watch?v=Q6M5hIGdpXM)

I am lost as to where the discussion about my confusion over Jack and John is, but I'm made an especially boring video to underscore the confusion. A really good jazz audio and some title were stripped by one of the programs I used to process this into something uploadable on YouTube: rats! It took care of the tedium.

jola57
08-11-2009, 04:22 AM
I did my blood work week friday and am waiting for results hopefully today. I will go to my dr when I get the result. I do eat a lot of beets, boil, shred them and then ether do a soup or gently fry them with butter.

Jack
08-11-2009, 04:24 AM
Just to confuse you even more, I live in Solihull which is not strictly speaking part of Birmingham and my real name is John! :D

Luce
08-11-2009, 06:25 AM
Hahahaha, Doug you can try to keep up but this lot are running rings around you!!

jola57
08-11-2009, 01:47 PM
See Doug, ya just cant keep a good man down.
got back my blood results and they are somewhat ok, lymphs v. low, anca at 163 (its creeping up again) AST slightly high but ALT ok, creat 94 and GFR low, some white cells in urine. but that is it so maybe it is just the gall stones. will talk to my family dr. soon

Doug
08-12-2009, 01:08 AM
ah sitting around the camp fire talking about poop.what golden memories.:D
john.

I don't know, Jack, John lost me at "sitting around the camp fire talking about poop". Or John. Oh well! Wasn't that video drab? I imagine it was more interesting to UK citizens simply because of familiarity with the countryside. :o

maria garcia
04-29-2011, 02:50 PM
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. :D Please be nice!

THANKS!
:p


Bovine Colostrum Relieves Autoimmune Disorders Without Side Effects
The Science
"Colostrum contains a special Proline-Rich-Polypeptide (PRP) that serves as a powerful regulator of the immune system. PRP in colostrum increases the permeability of the skin vessels, which offers a regulatory activity, stimulation or suppressing the immune response." (Staroscik)
"The ability to stimulate or suppress the immune response is highly significant. Suppressing the immune system is necessary to prevent the immune system from attacking the body itself, as in the case of autoimmune disease such as rheumatoid arthritis, lupus, MS, Alzheimer's disease and allergies. Colostrum's suppressive action may help prevent this type of activity involved in autoimmune diseases

JanW
04-29-2011, 10:38 PM
Maria -- I see that Sangye replied to you in another thread, but I also wanted to emphasize how dangerous it is to go down this road when dealing with vasculitis. We are already talking about a disease that affects a very small percentage of the population, is ultimately fatal if not treated and can do a great deal of damage if improperly treated. The really good news is that doctors do know what works to treat WG. Your daughter needs to follow the advice of a WG specialist and get on the road to recovery. She doesn't have the 'luxury' of attempting to treat the disease with natural remedies.

Sangye
04-30-2011, 12:08 AM
Yup. Maria, start at the beginning of this thread and read down a few posts. I posted a lengthy explanation of why this is dangerous. I'm a holistic physician. If there were any chance of treating this naturally I certainly would be doing that. There isn't, so I'm not.

Jules
04-30-2011, 01:32 AM
Sangye, I have no intention of giving up my meds, but is there ANYTHING you, or anyone else, have come across that can help sleep?

maria garcia
04-30-2011, 10:30 AM
I appreciate all the replys, and I understand where everyone is coming from, but I do believe there is an answer to every question and that answer can be found in the foods we eat, the earth around us and natural products. I just think this disease is so rare, and so few people are diagnosed, that not enough research is done and not enough questions are asked. There is a cure, theres a cure for everything. Even Cancer. Just not everything has been found.














I know alot of people have just accepted that this is something you have to live with and deal with, and yes, that is true, but you should never give up researching and trying to find a better solution. There is always a way. :D

I let my doctors know every single thing I take, and although Ive researched alot of supplements, I dont just jump into taking them. Anyone can tell you to take something, but that doesnt mean they know what they are talking about. My best friend is in college right now for homeopathic medicine, and believe me, she has tried to get me to take a million different things, has every idea in the book, but Im not going to just start popping herbs and supplements and seeing which one sticks to the wall. lol. Really I was just looking for some ideas on some remedies for the side effects, the ailments, all that good stuff. I know no one has a cure or it would be all over this board!

My doctors have assured me thought that the garlic is fine, and the most its going to do is give me worse acid reflux. The things about the immune system- well thats another story. Ive talked to them about that, and they dont seem to have a problem with doing what I can to boost my immune system. Ive been told that the drugs are there to, yes, supress it, but you have to also boost your immunity and rebuild your sytem. The drugs supress the disease. If you kill off your entire immune system, THAT will kill you. Why else would we be told to eat healthy? Healthy food boosts your immune system. you have to replace the bad with good. At first, I read that Alpha Lipoic Acid helped with alot of cell regineration, and boosting immunities so I got a small bottle, took it to my doc, she said it should be ok. I took it for a week. Did some more research, and although I dont think its going to do harm, I dont think its the right thing to take RIGHT NOW. It also takes toxins and tries to illiminate them, but by doing this it passes thru your brain and cardio system some how- I dont remember now, but has something to do with the blood flow- and I just dont know if I want the drugs, the disease, and any toxins I have being pushed farther into my lungs, my blood, you know what I mean. So I stopped taking it.

Now I just stick to the Vitamins, flax oil, calcium and eating healthy. I do believe alot of this is based around inflammation. I also have lipitin resistance, have had it for years, and my body has always had an inflammation problem. I think that could have been what set it off. Eating healthy, then throwing it out of whack eating bad, then back to eating healthy- I just dont believe my body could handle it anymore.

I appreciate everyones concern, I really do. Its great to have a "family" behind me who has been there and knows whats going on. And trust me, I dont just jump on fads and try everything. I let my doctors know before I do a thing. They know everything Im taking, down to the name brands of the calcium and vitamins. There is a holistic doctor right by me im going to call just to see if he has even HEARD of this. I wouldnt even talk to someone who didnt. But its just not in me to accept that there is no other solutions. I just think they havent been discovered yet. If you accept there are no other options, thats like your saying your just waiting it out until it kills you. I cant do that! Theres new research and info being found everyday, so tomorrow, you never know, tomorrow may be the day someone says hey, "drinking lemonade everyday will cure wegeners!" lol.

you just never know. ;)

Ive read alot of good things about colostrum.

Deanne Hull
04-30-2011, 11:53 PM
that is an amazing piece of advice and shall copy and paste and send it to my family, thank you!!!!

Sangye
05-01-2011, 12:10 AM
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
05-01-2011, 12:31 AM
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.

maria garcia
05-07-2011, 09:23 AM
ya no kidding, theyd call it weggie juice and say it was the miracle cure, only $129.95 for a 8oz supply! lol

I heard COLOSTRUM is very good! And Mila seeds. and probiotic and fish oils. Let me know when you try someting that is working :)

shadow
05-10-2011, 02:51 AM
You mentioned chiropractor and accupuncture. What can they do? I have always assumed that we should avoid this. I'm down to 5 mg pred and pains and pinched nerves are showing up now. Am being sent to pain clinic but wonder if another option is worth looking into.
Shari

Sangye
05-10-2011, 03:19 AM
It's very important to get your spine adjusted by a chiropractor regularly. The spine houses a large part of the central nervous system. If there's a misalignment in the vertebrae, the exiting spinal nerves will send and receive aberrant messages to the entire body. One misalignment can cause havoc, even if it is not painful. Also, chiropractors will look at other areas like nutrition that our MDs are not trained in.

Acupuncture is also excellent, as it balances out chi.

For both, you must make sure to tell the provider not to do anything that deliberately stimulates the immune system. With Wegs that will spark a wildfire. You have to explain what I said in the beginning of this thread-- that Wegs is not like most other AI diseases. You can tell them that this came from a chiropractor with Wegs. :wink1:

elephant
05-10-2011, 10:32 AM
Hope you not flaring, since you got down on the prednisone. Keep a good eye on any joint pain, feeling more tire, or feverish....etc.

shadow
05-10-2011, 02:04 PM
I feel a lot better. Was put on cytoxin after being in full flare. Have been able to get pred down now. Blood work is great just had leg cramps spasms. Had EMG this is where rthey found pinched nerve. I' m scared to go to the pain clinic don't want invasive treatment, but can't work this way. Either.

mishb
05-10-2011, 08:46 PM
Was wondering whether anyone has heard of or has used New Zealand Green Lipped Mussels. When I was first diagnosed with RA I was continually told to try it, apparantly is way better than glucosamine and is so good can get those riddled with arthritic pain out of wheelchairs and walking with only mild pain.
I personally have not tried it but the read ups are good, I just can't stomach shellfish of any kind.
As I said, just wondering, would it work with those intermittent, travelling joint pains we get with WG

Michelle

Sangye
05-10-2011, 11:31 PM
Shadow, a pain clinic can't do anything to resolve the cause of the pinched nerve. All they do is treat the pain. I suggest you see a chiropractor to correct the cause.

mishb, I suggest you see a holistic doc to get a good quality glucosamine supplement that really works. The OTC ones are not worth your money.

mishb
05-10-2011, 11:50 PM
Thanks Sangye, I'm fine. I have been taking glucosamine for some years now and it takes the edge off but some "meaningful friends" tell me of these mussels that work better.
I can't bring myself to try the slimy things though ...yuk. I know they are dead and all but, I say again ...yuk :thumbdn:

Michelle

Sangye
05-11-2011, 12:03 AM
Yeah it's bad enough if you don't like seafood, but green-lipped seafood? :biggrin1:

me2
05-11-2011, 12:23 PM
I heard about these green lipped mussels some time ago. I only vaguely remember what I learned then ( and don't have time this minute to look up) but they are available as supplements. You don't need a salt water fish tank in your living room to keep a supply on hand (although, you could then raise fish with green lips too)
I know Moxxor was one brand I looked at. They claim huge anti-inflammatory properties. I would do my research again ( to basically check on THEIR research). I found at least a couple of youtube videos of people wanting to sell the pills.