Natural or Homeopathic Remedies?

[Jack]

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]

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]

[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.

[GeorgiaInOhio]

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.

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]

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]

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]

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.

[GeorgiaInOhio]

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]

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]

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 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.