Re: The long & the short of it

[Guest guest]

Ok Ramblin Rose--

After you see the nephrologist-- start using MILK THISTLE CAPSULES-- YOU CAN'T OVERDO-- THEY ARE NOT TOXIC.

Milk Thistle works by detoxing the liver--(I know, your's is kidney) but if you take some of the work off the liver, it also helps relieve the kidneys.

Rose-- is it that you can't get Remicade because of insurance--or did you try it and it didn't work for you. I can't remember. .

anyway, one of the benefits that I've had since being on the Remicade is that my blood work --for the 2nd time in 15 yrs with this disease, came back all in the normal range. So the Remicade has balanced out the liver/kidney CBC abnormalities!

don't start on the milk thistle until you see the nephrologist-- he'll want certain tests-- and you need to know what is truly going on. After that-- then do as much "natural" stuff as you can-- as all these drugs are hard on our livers and kidneys. (Tracie is chugging her water, visualizing it to be a strawberry daiquiri).

Sending you hugs, and take care of Rose. I'm around for a short while each day-- and will try to be online more so you can rest.

Parteee on my friend, and take care of you.

Love ya,

Tracie

NS co-owneer/moderator

[Guest guest]

Ok Ramblin Rose--

After you see the nephrologist-- start using MILK THISTLE CAPSULES-- YOU CAN'T OVERDO-- THEY ARE NOT TOXIC.

Milk Thistle works by detoxing the liver--(I know, your's is kidney) but if you take some of the work off the liver, it also helps relieve the kidneys.

Rose-- is it that you can't get Remicade because of insurance--or did you try it and it didn't work for you. I can't remember. .

anyway, one of the benefits that I've had since being on the Remicade is that my blood work --for the 2nd time in 15 yrs with this disease, came back all in the normal range. So the Remicade has balanced out the liver/kidney CBC abnormalities!

don't start on the milk thistle until you see the nephrologist-- he'll want certain tests-- and you need to know what is truly going on. After that-- then do as much "natural" stuff as you can-- as all these drugs are hard on our livers and kidneys. (Tracie is chugging her water, visualizing it to be a strawberry daiquiri).

Sending you hugs, and take care of Rose. I'm around for a short while each day-- and will try to be online more so you can rest.

Parteee on my friend, and take care of you.

Love ya,

Tracie

NS co-owneer/moderator

[Guest guest]

Ok Ramblin Rose--

After you see the nephrologist-- start using MILK THISTLE CAPSULES-- YOU CAN'T OVERDO-- THEY ARE NOT TOXIC.

Milk Thistle works by detoxing the liver--(I know, your's is kidney) but if you take some of the work off the liver, it also helps relieve the kidneys.

Rose-- is it that you can't get Remicade because of insurance--or did you try it and it didn't work for you. I can't remember. .

anyway, one of the benefits that I've had since being on the Remicade is that my blood work --for the 2nd time in 15 yrs with this disease, came back all in the normal range. So the Remicade has balanced out the liver/kidney CBC abnormalities!

don't start on the milk thistle until you see the nephrologist-- he'll want certain tests-- and you need to know what is truly going on. After that-- then do as much "natural" stuff as you can-- as all these drugs are hard on our livers and kidneys. (Tracie is chugging her water, visualizing it to be a strawberry daiquiri).

Sending you hugs, and take care of Rose. I'm around for a short while each day-- and will try to be online more so you can rest.

Parteee on my friend, and take care of you.

Love ya,

Tracie

NS co-owneer/moderator

[Guest guest]

Tracie, As far as I've been able to determine, in Indiana Medicare will only cover Remicade for sarc if it's for "sarc arthritis," which I don't have; I have occasional pain in my left thumb joint, which has been labeled arthritis, and pain in my right knee if I bend it for long, like the fetal position for sleep. The other possibility is when all other treatments have been tried & failed. Which is why we were going to try the Cytoxan first. I have used Milk Thistle off & on, but run out, write it on a list, the list crawls under some other papers & I don't think of it again for weeks. You have papers that crawl & huddle, don't you? And reproduce to make bigger piles while you are sleeping?

But I will try to get the Milk Thistle Monday. I'm writing it on the fridge shopping list now.

Hmmm, I love Strawberry Daiquiris too--my favorite alcoholic drink. I've had the non-alcoholic versions, but it's just not the same.

Thanks for the advice & the push!

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: The long & the short of itDate: Sun, 9 Jul 2006 00:26:18 EDT

Ok Ramblin Rose--After you see the nephrologist-- start using MILK THISTLE CAPSULES-- YOU CAN'T OVERDO-- THEY ARE NOT TOXIC.Milk Thistle works by detoxing the liver--(I know, your's is kidney) but if you take some of the work off the liver, it also helps relieve the kidneys. Rose-- is it that you can't get Remicade because of insurance--or did you try it and it didn't work for you. I can't remember. .anyway, one of the benefits that I've had since being on the Remicade is that my blood work --for the 2nd time in 15 yrs with this disease, came back all in the normal range. So the Remicade has balanced out the liver/kidney CBC abnormalities! don't start on the milk thistle until you see the nephrologist-- he'll want certain tests-- and you need to know what is truly going on. After that-- then do as much "natural" stuff as you can-- as all these drugs are hard on our livers and kidneys. (Tracie is chugging her water, visualizing it to be a strawberry daiquiri). Sending you hugs, and take care of Rose. I'm around for a short while each day-- and will try to be online more so you can rest. Parteee on my friend, and take care of you.Love ya,TracieNS co-owneer/moderator

Save time by searching from any Web page… use the MSN Search Toolbar- it's FREE!

[Guest guest]

Tracie, As far as I've been able to determine, in Indiana Medicare will only cover Remicade for sarc if it's for "sarc arthritis," which I don't have; I have occasional pain in my left thumb joint, which has been labeled arthritis, and pain in my right knee if I bend it for long, like the fetal position for sleep. The other possibility is when all other treatments have been tried & failed. Which is why we were going to try the Cytoxan first. I have used Milk Thistle off & on, but run out, write it on a list, the list crawls under some other papers & I don't think of it again for weeks. You have papers that crawl & huddle, don't you? And reproduce to make bigger piles while you are sleeping?

But I will try to get the Milk Thistle Monday. I'm writing it on the fridge shopping list now.

Hmmm, I love Strawberry Daiquiris too--my favorite alcoholic drink. I've had the non-alcoholic versions, but it's just not the same.

Thanks for the advice & the push!

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: The long & the short of itDate: Sun, 9 Jul 2006 00:26:18 EDT

Ok Ramblin Rose--After you see the nephrologist-- start using MILK THISTLE CAPSULES-- YOU CAN'T OVERDO-- THEY ARE NOT TOXIC.Milk Thistle works by detoxing the liver--(I know, your's is kidney) but if you take some of the work off the liver, it also helps relieve the kidneys. Rose-- is it that you can't get Remicade because of insurance--or did you try it and it didn't work for you. I can't remember. .anyway, one of the benefits that I've had since being on the Remicade is that my blood work --for the 2nd time in 15 yrs with this disease, came back all in the normal range. So the Remicade has balanced out the liver/kidney CBC abnormalities! don't start on the milk thistle until you see the nephrologist-- he'll want certain tests-- and you need to know what is truly going on. After that-- then do as much "natural" stuff as you can-- as all these drugs are hard on our livers and kidneys. (Tracie is chugging her water, visualizing it to be a strawberry daiquiri). Sending you hugs, and take care of Rose. I'm around for a short while each day-- and will try to be online more so you can rest. Parteee on my friend, and take care of you.Love ya,TracieNS co-owneer/moderator

Save time by searching from any Web page… use the MSN Search Toolbar- it's FREE!

[Guest guest]

Tracie, As far as I've been able to determine, in Indiana Medicare will only cover Remicade for sarc if it's for "sarc arthritis," which I don't have; I have occasional pain in my left thumb joint, which has been labeled arthritis, and pain in my right knee if I bend it for long, like the fetal position for sleep. The other possibility is when all other treatments have been tried & failed. Which is why we were going to try the Cytoxan first. I have used Milk Thistle off & on, but run out, write it on a list, the list crawls under some other papers & I don't think of it again for weeks. You have papers that crawl & huddle, don't you? And reproduce to make bigger piles while you are sleeping?

But I will try to get the Milk Thistle Monday. I'm writing it on the fridge shopping list now.

Hmmm, I love Strawberry Daiquiris too--my favorite alcoholic drink. I've had the non-alcoholic versions, but it's just not the same.

Thanks for the advice & the push!

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: The long & the short of itDate: Sun, 9 Jul 2006 00:26:18 EDT

Ok Ramblin Rose--After you see the nephrologist-- start using MILK THISTLE CAPSULES-- YOU CAN'T OVERDO-- THEY ARE NOT TOXIC.Milk Thistle works by detoxing the liver--(I know, your's is kidney) but if you take some of the work off the liver, it also helps relieve the kidneys. Rose-- is it that you can't get Remicade because of insurance--or did you try it and it didn't work for you. I can't remember. .anyway, one of the benefits that I've had since being on the Remicade is that my blood work --for the 2nd time in 15 yrs with this disease, came back all in the normal range. So the Remicade has balanced out the liver/kidney CBC abnormalities! don't start on the milk thistle until you see the nephrologist-- he'll want certain tests-- and you need to know what is truly going on. After that-- then do as much "natural" stuff as you can-- as all these drugs are hard on our livers and kidneys. (Tracie is chugging her water, visualizing it to be a strawberry daiquiri). Sending you hugs, and take care of Rose. I'm around for a short while each day-- and will try to be online more so you can rest. Parteee on my friend, and take care of you.Love ya,TracieNS co-owneer/moderator

Save time by searching from any Web page… use the MSN Search Toolbar- it's FREE!

[Guest guest]

the list crawls under some other papers & I don't think of it again for weeks. You have papers that crawl & huddle, don't you? And reproduce to make bigger piles while you are sleeping?

Yep-- it's a seriously serious problem-- and I have no answers for it. LOL!

[Guest guest]

the list crawls under some other papers & I don't think of it again for weeks. You have papers that crawl & huddle, don't you? And reproduce to make bigger piles while you are sleeping?

Yep-- it's a seriously serious problem-- and I have no answers for it. LOL!

[Guest guest]

the list crawls under some other papers & I don't think of it again for weeks. You have papers that crawl & huddle, don't you? And reproduce to make bigger piles while you are sleeping?

Yep-- it's a seriously serious problem-- and I have no answers for it. LOL!

[Guest guest]

Rose, I am so sorry the news was the best in the world. I'm really glad they are getting aggressive in the treatment, as you already know slowing the damage is major important. Hopefully, everything will turn out better than your thinking right now, I am a realist but we don't need to bite off more trouble than we know for sure we have. You all are always in my prayers and the prayers of my mother and church. Take care of your self......Southern Hugs - ConnieRose wrote: Well, folks, here comes my report on "The Life & Times of Ramblin' Rose." For the short version (as short as I can get it), skip down to the *****. Get some tea, maybe some cheese & crackers, and get comfy. Summer camp: I went to see Dr. Baughman 7/6. My third visit to him. I had planned to discuss beginning Cytoxan, as we had talked about before. But we spent the session mostly talking about my kidney problems (see below). He ordered some lab work, recommended I get an EMG of my legs/feet, neuropsych eval (previously done 3 yrs. ago) and see a nephrologist (kidney specialist) at the Indiana Univ. Med Ctr., where I already had an appt. scheduled for 7/27 in the sarc clinic. He also had me stop the MTX again, as it is excreted through the kidneys. So NS treatment on hold for now. Kidneys: I apparently have some chronic kidney disease going on. The only previous problems I've had with my urinary tract were a kidney infection 30 years ago during pregnancy & an infection without symptoms 3 yrs. ago, while on Pred & Imuran. I've had a persistent, painful bladder infection for 3 months now. I just finished my 4th course of antibiotics. I am religious about taking antibiotics correctly, drank even more fluids than I usually do, which is a lot, guzzled cranberry juice, avoid bladder irritants & every other trick I know for prevention & cure of UTI's. I went for a TOC (test of cure) yesterday & should hear something Monday, but I doubt it's gone. Anyway, with the 3rd positive culture, I was referred to a urologist, who ordered a 24 hr. urine collection for creatinine clearance, a measure of kidney function, and also a CT of the kidneys. I also had noticed a

decrease in amount of urine for the past few months, but no swelling that I could tell. Even with really forcing fluids, to the point of feeling sick, my urine was still concentrated. Anyway, the CT was negative, which doesn't tell you much. But the 24 hr. CC was pretty low, putting me at Stage 3 kidney disease. Now back in Feb. I had a chemistry panel that included an estimated GFR (glomerular filtration rate--basically the same as the CC, but based on serum creatinine) that said the same thing, but my primary care doc kind of blew it off. The urologist didn't blow it off & the CC basically confirmed it. He wants me to see a nephrologist, a sub-specialist who knows more about kidneys than just a regular urologist. The fact that I've had hypertension for 10 years (way before the sarc) & am now diabetic has him especially concerned. He said that the nephrologist could determine just what the problem is, but he

commented that "we can't reverse the damage already done, but hopefully prevent any further damage." Baughman said I might need a renal biopsy to find out if the kidney problem is sarc-related or something else. Of course, I've been all over the Internet & the likeliest cause I've found is chronic glomerulonephritis. The earliest symptom is often hyper-tension, but many people have no symptoms until middle age, when they often present in kidney failure! On the chart of kidney disease, where I was Stage 3, Stage 5 is when you need dialysis or transplant. So the past couple of weeks I have bounced back & forth between wondering if I would be eligible for a transplant with NS & trying to picture myself getting dialysis for the rest of my life, and telling myself to cut the drama, it could turn out to be something minor, or a screwed up test & everything's fine! That's one reason I haven't been a faithful moderator--by the

time I'd do a couple of hours of research, I'd be too exhausted to answer email for the group; Sam even found me asleep at the computer one early morning, keyboard on my lap. I saw my primary doc yesterday (the one who wasn't impressed by the GFR in Feb.) and I have to give him credit; he is taking it very seriously now & he was concerned & caring. He said, "You just keep getting more piled on, don't you?" and asked me how I was doing, was there anything he could help me with. He actually did help with a question I had about peripheral neuropathy (see below). So on Monday I will call I.U. & see if I can see a nephrologist the same day I see the sarc guy. Peripheral neuropathy: Barb, I forgot to mention this to you in an earlier email, but Dr. Baughman (U. of Cincinnati) said that they have used Thalidomide for painful neuropathy--it gets rid of the pain, but you still have the

numbness. I don't think I'm interested now, but if it gets much worse, I might consider it. I don't remember where you live, but you might have your doctor contact Baughman if you are interested in more info. I haven't checked for info on the web. Re: the neuropathy, I have been concerned the last couple of years with my blood sugars up & down, being told I was "pre-diabetic," "borderline diabetic," "metabolic syndrome," "insulin-resistant," and plain old "diabetic," that my worsening neuropathy might be diabetes-related, rather than sarc-related. I couldn't find the answer, so I asked my doctor yesterday. He said that diabetic neuropathy usually starts with pain, then as it progresses, it just becomes numbness. That's why diabetics have to inspect their feet all the time, because they don't feel pain from cuts or sores. Other neuropathies, like the sarc, usually start with numbness & progress to pain.

Since mine started with numbness & is getting more painful, although I still have numbness too, it's probably not diabetic-related. He had advised me last visit to try the South Beach diet, as people who lost weight on it tended to lose some of the middle fat. I'm in the 5th week of the Ramblin' Rose version & I've lost 11#. I'll keep you all posted. It really isn't that bad after the first two weeks, and it's a pretty good diet, much more balanced than Atkins. ******I've got a kidney problem, maybe chronic kidney disease. Could be serious, hopefully not. Need to see a nephrologist, maybe have a kidney biopsy. Treatment of sarc on hold until more info on kidney situation. Neuropathy getting worse--have an appt. at the Indiana Univ. Medical Ctr. Sarc Clinic 7/27. On South Beach diet with some success! Ramblin' Rose Moderator Get the new Windows Live Messenger!

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[Guest guest]

Rose, I am so sorry the news was the best in the world. I'm really glad they are getting aggressive in the treatment, as you already know slowing the damage is major important. Hopefully, everything will turn out better than your thinking right now, I am a realist but we don't need to bite off more trouble than we know for sure we have. You all are always in my prayers and the prayers of my mother and church. Take care of your self......Southern Hugs - ConnieRose wrote: Well, folks, here comes my report on "The Life & Times of Ramblin' Rose." For the short version (as short as I can get it), skip down to the *****. Get some tea, maybe some cheese & crackers, and get comfy. Summer camp: I went to see Dr. Baughman 7/6. My third visit to him. I had planned to discuss beginning Cytoxan, as we had talked about before. But we spent the session mostly talking about my kidney problems (see below). He ordered some lab work, recommended I get an EMG of my legs/feet, neuropsych eval (previously done 3 yrs. ago) and see a nephrologist (kidney specialist) at the Indiana Univ. Med Ctr., where I already had an appt. scheduled for 7/27 in the sarc clinic. He also had me stop the MTX again, as it is excreted through the kidneys. So NS treatment on hold for now. Kidneys: I apparently have some chronic kidney disease going on. The only previous problems I've had with my urinary tract were a kidney infection 30 years ago during pregnancy & an infection without symptoms 3 yrs. ago, while on Pred & Imuran. I've had a persistent, painful bladder infection for 3 months now. I just finished my 4th course of antibiotics. I am religious about taking antibiotics correctly, drank even more fluids than I usually do, which is a lot, guzzled cranberry juice, avoid bladder irritants & every other trick I know for prevention & cure of UTI's. I went for a TOC (test of cure) yesterday & should hear something Monday, but I doubt it's gone. Anyway, with the 3rd positive culture, I was referred to a urologist, who ordered a 24 hr. urine collection for creatinine clearance, a measure of kidney function, and also a CT of the kidneys. I also had noticed a

decrease in amount of urine for the past few months, but no swelling that I could tell. Even with really forcing fluids, to the point of feeling sick, my urine was still concentrated. Anyway, the CT was negative, which doesn't tell you much. But the 24 hr. CC was pretty low, putting me at Stage 3 kidney disease. Now back in Feb. I had a chemistry panel that included an estimated GFR (glomerular filtration rate--basically the same as the CC, but based on serum creatinine) that said the same thing, but my primary care doc kind of blew it off. The urologist didn't blow it off & the CC basically confirmed it. He wants me to see a nephrologist, a sub-specialist who knows more about kidneys than just a regular urologist. The fact that I've had hypertension for 10 years (way before the sarc) & am now diabetic has him especially concerned. He said that the nephrologist could determine just what the problem is, but he

commented that "we can't reverse the damage already done, but hopefully prevent any further damage." Baughman said I might need a renal biopsy to find out if the kidney problem is sarc-related or something else. Of course, I've been all over the Internet & the likeliest cause I've found is chronic glomerulonephritis. The earliest symptom is often hyper-tension, but many people have no symptoms until middle age, when they often present in kidney failure! On the chart of kidney disease, where I was Stage 3, Stage 5 is when you need dialysis or transplant. So the past couple of weeks I have bounced back & forth between wondering if I would be eligible for a transplant with NS & trying to picture myself getting dialysis for the rest of my life, and telling myself to cut the drama, it could turn out to be something minor, or a screwed up test & everything's fine! That's one reason I haven't been a faithful moderator--by the

time I'd do a couple of hours of research, I'd be too exhausted to answer email for the group; Sam even found me asleep at the computer one early morning, keyboard on my lap. I saw my primary doc yesterday (the one who wasn't impressed by the GFR in Feb.) and I have to give him credit; he is taking it very seriously now & he was concerned & caring. He said, "You just keep getting more piled on, don't you?" and asked me how I was doing, was there anything he could help me with. He actually did help with a question I had about peripheral neuropathy (see below). So on Monday I will call I.U. & see if I can see a nephrologist the same day I see the sarc guy. Peripheral neuropathy: Barb, I forgot to mention this to you in an earlier email, but Dr. Baughman (U. of Cincinnati) said that they have used Thalidomide for painful neuropathy--it gets rid of the pain, but you still have the

numbness. I don't think I'm interested now, but if it gets much worse, I might consider it. I don't remember where you live, but you might have your doctor contact Baughman if you are interested in more info. I haven't checked for info on the web. Re: the neuropathy, I have been concerned the last couple of years with my blood sugars up & down, being told I was "pre-diabetic," "borderline diabetic," "metabolic syndrome," "insulin-resistant," and plain old "diabetic," that my worsening neuropathy might be diabetes-related, rather than sarc-related. I couldn't find the answer, so I asked my doctor yesterday. He said that diabetic neuropathy usually starts with pain, then as it progresses, it just becomes numbness. That's why diabetics have to inspect their feet all the time, because they don't feel pain from cuts or sores. Other neuropathies, like the sarc, usually start with numbness & progress to pain.

Since mine started with numbness & is getting more painful, although I still have numbness too, it's probably not diabetic-related. He had advised me last visit to try the South Beach diet, as people who lost weight on it tended to lose some of the middle fat. I'm in the 5th week of the Ramblin' Rose version & I've lost 11#. I'll keep you all posted. It really isn't that bad after the first two weeks, and it's a pretty good diet, much more balanced than Atkins. ******I've got a kidney problem, maybe chronic kidney disease. Could be serious, hopefully not. Need to see a nephrologist, maybe have a kidney biopsy. Treatment of sarc on hold until more info on kidney situation. Neuropathy getting worse--have an appt. at the Indiana Univ. Medical Ctr. Sarc Clinic 7/27. On South Beach diet with some success! Ramblin' Rose Moderator Get the new Windows Live Messenger!

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