Mom of Newly Diagnosed 18 Year Old -- HELP!

[Doug]

Per day, I hope! The only way I could drink two liters of fluid a day is if it was in two one liter glasses marked Pilsner Urquell! Even then I can't imagine. I did drink water several times a day from a 32oz. glass, so I may well have exceeded two liters. I filled the glass to the top, but never drank the full amount and one time.

[Sangye]

Yes, per day! Two liters is not an overbearing amount, Doug. It's about 8 cups of water (or 68 oz, eight 8 oz glasses). I carry a 1-liter Nalgene bottle and would fill it twice a day on ctx. Easy way to keep track of my water intake.

[onatreetop]

My urlg. Told me two quarts min. of water a day. Plus 1000mg vit. C twice a day. He said it will keep my kidney stones in check and clean out what ever is hanging around. So for so good. still have blood in the pee thought. Had it before I was dx's with weg. one of my symptoms.

[Jack]

I think I was only on Ctx for less than a year first time, but still ended up sterile so the sperm collection is a great move.

Although the relapse rate may be 50%, this just means that another (often shorter) sesion of high dose treatment is required to bring it in check again. I relapsed several times before settling down into many years of remission.

It can sometimes be a long roller coaster ride, but there is light at the end of the tunnel.

[Sangye]

Onatreetop, if you're getting kidney stones, you have a phosphorus deficiency. That'll cause plaque on the teeth as well. Phosphorus and calcium have to be in balance. If your phosphorus levels are too low, your body starts pulling calcium out of your bones to maintain a proper pH. (Calcium is the most mobile pH modulator) That excess calcium deposits in the kidneys as stones and in joints. It causes generalized stiffness after sitting for a few minutes.

Some concerns about taking 2,000 mg of vitamin C each day : The level of vitamin C that stimulates the immune system varies greatly between people and within the same person (ie, this week 2,000 mg isn't much for your body, but next week it might be)

This could work in opposition to the Wegs drugs. Keep a close eye on your Wegs symptoms to see if the vitamin C is increasing them. It might be very hard for you to tell at this point since you're newly dx'ed. If I take 1,500 mg vitamin C just 2 days in a row, I have a definite increase in Wegs symptoms.

MDs might laugh at that. They use "one size fits all" dosages for vitamins. (Not trying to diss MDs--it's a matter of not being trained in advanced clinical nutrition and relying on RDA dosages) That would mean everyone--regardless of age, gender, weight, immune status, diet, GI tract function, amount of exercise, stress level, use of meds, exposure to toxins, kidney and colon function, water intake, and other medical conditions-- should all take the same dose. A 21 yr old world class female athlete with an excellent diet just does not have the same nutritional needs as an overweight 40 yr old male who lives on Coke, McDonald's and cigarettes!

[RCOSSIO]

Dougie,

I probably drink way too much water...about 120-140 oz a day (and I am not even on Cytoxan).

Anway, I frequently visit the restroom so often that I am sure if any fish in the ocean has WG its been cured with the amount of times I go.

[bboop]

Sangye,
You're going to have to forgive me for being dense. It's not just that I'm exhausted, which I am, but also, I'm not a science person (I barely made it through biology and I don't "get," science). Hence, I'm probably going to screw up a lot of facts along the way. Thanks for being forgiving -- I know you're a major science person and if someone butchered my specialty the way I'm butchering yours -- well I don't know if I'd be as kind to them as you've been to me.

Bonnie

[Sangye]

Please don't apologize! I love explaining this kind of stuff. I miss working as a chiropractor and this keeps my brain working. Just ask if you need more clarification. My explanations are probably off anyway, since my mind is muddied these days.

[onatreetop]

I thought about the c increasing the immun. but thought that the wgs meds were stronger. I know that I can't absorob 2000mg. i believe the mgs that can be are 600? The rest goes out as waste? The symtoms have increased and I went to the RA and we did the catscan of sinus and it came back normal.How did you find out that you had the pressure in your head and spine? I seem to have a headache that wont go away. caffine, migrane meds take the edge off but it never goings away? i think I read that that was a side effect form the pred too?

How do I increase the phos. ? What vitamin ? I take about twelve now with my morning meds.

[Jack]

What vitamin ? I take about twelve now with my morning meds.

I'm no expert on interactions, but that sounds like asking for trouble. There are plenty of side effects to the drugs you have to take without the complication of mixing them with other things. If you have a reasonable diet, there really is no need for a lot of suplements.