How to help someone newly diagnosed and being advised to see a natural doctor

[ArlaMo]

My cousin Kari sent me a message this morning that a good friend of hers has been recently diagnosed with WG. From the info she sent, it looks like she has seen three different doctors. One gave her the diagnosis (not sure how - whether it was a blood test or biopsy), the second told her she was fine and the third was just having her monitored every couple of months. But then she states that her last appointment shows kidney involvement :ohmy: but the doc didn't seem to think it was related!! I don't think she is even on any meds at this point.

Kari asked if she could put her friend in touch with me and I just sent a message saying of course. I will definitely suggest coming here AND getting to see a Wegs specialist.

However, I read her FB page (she had a note about it and was requesting her friends to help her) and she is getting a lot of info about going to natural docs and avoiding all the "bad" medicines regular doctors prescribe. One person goes as far as to suggest a particular doctor and that she might be "cured" with just one visit. This same person also says she did a bit of reading about Wegs and has come to the conclusion that it could be food allergy related.

I have lots of respect for natural, holistic docs - I see one myself - but I'm really concerned about the advice she is getting. When she does contact me, what websites, resources, advice would you all suggest?

[freakyschizogirl]

I think most people can relate to not wanting to go on "bad" drugs and not wanting to muck up your body any more than the disease will. Steroids are wrecking my body when i only have limited sinus Wegs. Feels like cutting my nose of to spite my face, almost literally.

And as far as i know immunse disease arnt curable and are not caused by food allergies, if they were then we'd all be on Benadryl.

Please urge your friend to seek medical advice.

[NicShaf]

The Vasculitis Foundation has good information. Also the Mayo clinic has a great description of Wegs and it's sypmtoms/ treatments.

Mayo:
Wegener's granulomatosis - MayoClinic.com (http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833)

Vasculitis Foundation:
Vasculitis Foundation | The Vasculitis Foundation supports and empowers patients through education, awareness and research. (http://www.vasculitisfoundation.org/)

I really hope your friend takes your advice to heart, this is not something to mess with. Best of luck!

[Sangye]

ArlaMo, I copied a few things from other posts I've done about this subject:

I'm a chiropractor and until I got Wegs, I rarely even took aspirin. It was nightmarish for me to even consider Wegs treatment. But once I knew the diagnosis and the prognosis if it wasn't treated (ie, 100% fatal), I accepted the treatment. I didn't love it, I hated it. I hated what it did to my body, my life, my job, everything. You do what you have to do to stay alive, and you pick up the pieces later.

There is no evidence whatsoever--not a single case study or bit of anecdotal evidence-- that discusses holistic-only treatment of Wegs. There are none that discuss partial holistic treatment of Wegs. NONE. Wegs is not mentioned anywhere in holistic research. I go to well-trained holistic physicians and they all agree that there is no way to treat Wegs holistically.

Wegs is not RA or MS. Those aren't deadly, and when they're doing damage you know it. So for many other AI diseases you can use holistic remedies with or without drugs and have wonderful results. Try that with Wegs and you will die (or at the very least do permanent damage). I speak from experience. Before I knew I had Wegs, we were doing everything to boost and regulate my immune system, etc... and I was getting worse each day. I nearly died. Take home message : You cannot extrapolate info about other AI diseases to Wegs.

If she has kidney involvement she might already be in deep trouble. You are right in suggesting this group and a Wegs specialist. Feel free to give her my email address (PM me for it if you want). I'll do my best to make sure she takes this seriously.

Note: You can do some holistic treatments to support the body, just not anything directly aimed at the immune system, detoxing or trying to "cure" Wegs.

[ArlaMo]

Thank you so much! And special thanks to you, Sangye. I knew a little bit about your background from reading here and hoped you would chime in. Yeah, the kidney involvement is scary!

[delorisdoe]

It did not occur to me to hate the treatment until it was done. While going through it i just kind of did what I had to do. I spent no time thinking of how the drugs made me feel as I felt better than when I was sick and undiagnosed for @ least a year. It was not until I was being weined of the prednisone that the effects of the cytoxan really started to hit me. towards the end of my treatment-i was on cytoxan for 2.5 years-my white cell count got so low i had to go for ivig treatments. The doctor said i looked awful. i did not even notice as again it was still better than when I was undiagnosed. I have always been afraid of hollistic drugs as i wonder if they could "set off " the wg. Your new friend should not play with this disease. From my understandid there are some great doctors in the U.S. that would not put her on a drug regiman she did not need to be on.

leigh

[Sangye]

You're welcome. Been there, done that and am determined to keep anyone else from driving off that particular cliff. :wink1:

[aewaustin]

Sangye, just want to thank you for such a well written post, it is so helpful for others...

ArlaMo, good luck with your friend. I have also had friends that try to convince me on the holistic way, and am all for it for certain things, but is such a fight to get them to understand with Weg's you just can not play around...

[drz]

Sangye, just want to thank you for such a well written post, it is so helpful for others...

ArlaMo, good luck with your friend. I have also had friends that try to convince me on the holistic way, and am all for it for certain things, but is such a fight to get them to understand with Weg's you just can not play around...

Yes, thank you for the cogent post and thank you for being here and sharing. Your contributions are greatly appreciated.

[Sangye]

You're quite welcome. I'm glad to be able to help in any way. :smile1: