my sister

[elephant]

That helps Sangye. I am always thinking ....but with those stats 10% die or remain refractory- is it because they didn't try other options or to late when they were diagnosed. I know that some have died because of delayed diagnosis. I am wondering the medicines ...they were given to the 10% who died or 25 % never go into remission.
What makes the ones who go into remission stay in remission. I wonder if Mike Caven can let us know his journey( lifestyle, food, medicines, exercise, spiritual) so that we may learn something ...just maybe or anyone who has been in remission for over 20 years.
Just curious, hope I'm not driving people nuts...

[Sangye]

Some people are diagnosed when it's too late. The drugs just can't work fast enough, or maybe there's not enough viable tissue to work with.

The chronically refractory are a big mystery to the MDs. To holistic docs, not so much. It takes chi to recover, to respond to drugs. The drugs have to have something to work with. You can put gas in a car but without spark plugs it won't run. Maybe too much chi was lost by being ill a long time pre-diagnosis, or maybe the drugs have an especially deleterious effect on the person. Maybe both, as in my case.

We asked Mike some things when he first joined. It sounds like he just responded right away to the meds--textbook response-- and kept going. He flared last year (after about 27 yrs of remission) and again responded quickly to the meds. He went back into remission fairly quickly.

[JanW]

This is fascinating, Sangye. By the time you started conventional medical treatment (if I am remembering your story correctly you had been trying to work with natural remedies for some time but getting increasingly ill), did your doctors believe that you would respond well to treatment given your history, or was it more a case of "let's try whatever we can and see if it works because she is really ill?" Are there treatments that you received that you believe actually may have retarded your healing? I hope this is not too personal; feel free to tell me if you think it is.

[Sangye]

LOL-- it's not too personal, no worries.

I'd been trying purely wholistic remedies for 8-10 months pre-dx. The last 6 months of it were especially intense, as I was completely crippled by pain and doing a great deal of holistic treatment.

My first docs were far from Wegs specialists--really had no clue. They also had zero belief in holistic remedies, so they completely discounted that period. They just thought it was a natural progression of untreated Wegs. They did the "standard" protocol for someone with severe alveolar hemorrhage--oral ctx 150 mg and pred beginning at 1,000 mg IV solumedrol (equiv 1,250 mg oral pred). I stayed on ctx for 7-8 months and was transitioned to mtx for a couple months. I quickly developed infiltrates and had to stop mtx and pred.

The ctx weakened me terribly. It is overly toxic to me-- destroys my bone marrow faster than I can make it. It was clear within 3 months. They ignored that and kept me on it far too long. The massive doses of pred did me in. They didn't taper it correctly at all once I got under 20 mg. Way too fast, ignoring my complaints that the horrific Wegs pain was coming back. So the drugs weakened me terribly and still never put the Wegs fire out.

The fact that I developed uncountable leg and lung clots the week I was diagnosed also was a big factor. My lungs had been bleeding for 3 months and were then packed with clots. The tissue was really damaged. I lived at high altitude as well, which made it even harder to recover.

Another factor that weakened me was not getting me into aquatic physical therapy right away. My muscles wasted, I lost a tremendous amount of range of motion and had no possible way to strengthen. I went 3 yrs without PT.

I've always been very sensitive to meds. I never could tolerate regular doses. So when they give me standard doses of these drugs, it's a big problem. My JH docs understand that, and do use lower doses when we can.

[JanW]

So when you say that they discounted the period when you were trying holistic cures, do you mean that this discounted the fact that this could have been contributing to your symptoms (i.e. some things in your body were caused by WG and some were caused by reactions to the holistic medications)? Did they not know that your bone marrow was being destroyed? Your story just sounds so harrowing -- and so unfortunate that after all that time on those medications, it didn't bring the disease under control. What do the docs think will be the biggest factors in your getting better now -- or is it really too much of a crapshoot to say?

[Sangye]

The Wegs train was progressing terribly, but I inadvertently supplied another engine by boosting my immune system so thoroughly. They didn't believe holistic treatments can boost the immune system at all. That's what I meant by discounting.

In my case the holistic treatments were so powerfully diametrically opposed to what I needed, that it deepened the imbalance and weakened my foundational reserves.

This is exceedingly rare. I don't know of it happening with anything other than Wegs, actually. However, the converse is exceedingly common: medical treatments of many conditions are so powerfully diametrically opposed to what is needed that they deepen the imbalance. Allergies and recurrent infections (eg strep throat) are typical examples.

[elephant]

Thanks Sangye you really make sense when you explain medical terminology. Everyone is different. It's amazing to see why some can just take cytoxan for a few months and go into remission for 27 years! Wow! " I will have whatever he is eating." LOL
Sangye you are going to get better.

[Sangye]

ROTFL-- I want that meal, too. And I'd like a muffin on the side.

Thank you for the reassurance about getting better. It's powerful to see it in print, you know?

[onatreetop]

Holy Moly I'll take the buffet !!!!!! I have to saline rinse 4 x a day now. The gel packing is starting to come out Yuck!!!! No more bleeding. Still swollen and sore cant touch my nose. Limited to do no lifting, excerise, or putting my head down. finally took the drain catcher off after my shower today. Sofar no major drainage. I have had to shovel and do a lot with all this weather but so far so good. i stop when I know I need too. The kids are getting crazy in the house.We lost power last night for 8 hours too. That was fun I am just glad we have heat and water again.

Lila, how are you faring in this mess?

[JanW]

Sangye - wonder why this wouldn't happen with any other AI disease? Let's say someone goes to the acupuncturist with undiagnosed RA and gets their immune system boosted. Wouldn't that also be the exact opposite of what that RA patient should have?