Polycythemia Vera

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RE: Polycythemia Vera

by Sandridge on Sun Oct 28, 2012 01:56 AM

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On Oct 13, 2012 1:53 AM GUSRENTIT wrote:

On Oct 13, 2012 1:02 AM Sandridge wrote:

Any updates? I would like to know how its been going on the L-Arginine.  I have been on 3000mg per day for a month.  My blood pressure is slightly lower.  I'd like to know how 10,000mg per day has affected you.  The recommended dose is 3000mg per day.  I want to know if more that that is healthy.  Let me know how you are doing.

Well all I can say is that it has given me my life back! Now Keep in mind that the 3G=3000MG you take is below min., and I take 5G in the AM and 5G in the PM, safe dozes go upto at leat 30G a day and seen some info that takes it up to around 60G. The half life(useful time) of it is around 2 hrs, it would be good to take smaller amounts every few hours, but I also have to eat and take Aspirin, and you should avoid proteins and aspirin at leat 1 hr. before and after, the L-Arginine. One of my neighbours who is 74 yrs old, and is a 4 time cancer survivor, missing a kidney, diabetic, and has had a broken collar bone for over 1.5 yrs that would not heal. Well his wife could not believe, how good I looked and felt, so she got him on it, well after a month or so on it, @ just 3G he is off insulin, he can talk clearly again, he can stand up by himself, went to Doc, got Xrays, Doc could not beleive his eyes, his collar bone break is stitching back together. He can think clearly now, OH BTW his calestarol #s are way down too, I get a call at least once a week, telling me how great he is doing. My BP has been holding steady under 130/90, I'm able to to run my business for the first time in over a yr. I'd say it works for us! Get your doze up to at least 10G a day, and get back with me!

Good luck,

Gus 

2 days at 2 doses of 3G, just checked, 124/68. relaxed right now, got back home a few hours ago from the West Virginia High School State Cross Country Meet which was a few hours drive, Pleased with what I experienced there, home to a couple good doggies that relax the BP as well. A Good stress-free day contributes to BP being low, I'll check BP every few days on 2 doses of 3G. I've got the powder, advise me on what dose You take, an where to get it, Thanks,  Dave

RE: Polycythemia Vera

by GUSRENTIT on Mon Oct 29, 2012 02:51 PM

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Hi Dave, I take 5g in the early morning and 5g at bedtime, I make sure not to have any protein 1 hr before or after I take the L-Arginine. It's the only thing that has helped me. The drugs/Rx's the docs gave me made me feel real bad, this lets me live a much more normal life, day to day.

Good Luck,

Gus

RE: Polycythemia Vera

by BDK235 on Wed Dec 12, 2012 03:55 PM

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Hi Gus.  Was wondering if you're still taking the L-Arginine and how you're feeling now.  Trying to do some research since my mother has been recently diagnosed with secondary PV and the doctors can't really give her any olid answers.

Thanks 

RE: Polycythemia Vera

by GUSRENTIT on Wed Dec 12, 2012 05:44 PM

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Yes, I'm still taking around 5 Grams in the early morning and the same at bedtime, on rough days I take some in the early afternoon. It helps so much more that any of the RX's the docs had me on, and NO side effects! I found one that Sams Club is selling, it tastes good and it's less than $20 for 30 packs, it's called "Cardio Defender". I still have to get blood sucked out a few times a month. Now I have a Doc, that tells me that he thinks I have something else is also going on in me. So now I have more tests coming up. Contact me any time! Good Luck, Gus

RE: Polycythemia Vera

by marymc18 on Sat Jan 19, 2013 09:03 PM

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On Dec 12, 2012 5:44 PM GUSRENTIT wrote:

Yes, I'm still taking around 5 Grams in the early morning and the same at bedtime, on rough days I take some in the early afternoon. It helps so much more that any of the RX's the docs had me on, and NO side effects! I found one that Sams Club is selling, it tastes good and it's less than $20 for 30 packs, it's called "Cardio Defender". I still have to get blood sucked out a few times a month. Now I have a Doc, that tells me that he thinks I have something else is also going on in me. So now I have more tests coming up. Contact me any time! Good Luck, Gus

Hi Gus,  I'm new to this blog  (actually I've never been on any blog before... my kids remind me that I'm such a dinosaur when it comes to the internet :-) )  and I have been reading everyone's messages. I was just curious about something you said on your last message... that the doctor said there might be something new going on.  Did you find out anything new since then? I hope you're still feeling great since taking the L-Arginine.  I have PV, diagnosed Jan. 2012 age 51, on hydrea. I'm interested in trying the L-arganine but wasn't sure if I have the same as you.

RE: Polycythemia Vera

by healing1 on Tue Jan 22, 2013 03:48 PM

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On Jan 22, 2013 3:47 PM healing1 wrote:

http://www.traditionaloven.com/tutorials/l-lysine_rich_foods .html"" target="_blank" rel="nofollow">http://www.traditionaloven.com/tutorials/l-lysine_rich_foods target="_blank" rel="nofollow">http://www.traditionaloven.com/tutorials/l-lysine_rich_foods

Link to foods high in L-Arinine amino acid

Arginine that is

RE: Polycythemia Vera

by meaboutthis on Sat Mar 16, 2013 06:28 PM

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Hi morningstar 24,

I am 51 and was diagnosed last year, while looking back at past bloodwork, it seems I've had this since I was 39 or so.  My Dr. has the same opinion about the meds,  as long as the phlebs are working, no need for extra stuff that might have side effects.  I feel much as you do. I've always been a healthy, strong, active person and I too feel unwell and low energy now, a lot of the time.  I feel at times depressed about the shortening of life span attributed to this disease.  Then I focus on what is here and now, and on making my life meaningful in a current way, which seems to help with the depressed perspective, even though the facts are not different.  As for diet, aside from iron supplements, my Dr. advised staying clear of iron rich foods, specifically red meat, raisins, scallops, spinach, and other dark, leafy greens.  Best of luck to you.  

RE: Polycythemia Vera

by karoleRN on Mon Apr 08, 2013 11:44 PM

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PV and BP aren't necessarily related. I was dianosed with PV in 1987. I have been on a regimen of monthly CBC's and Hydrea 500mg every day. If my Hemoglobin is 15 or greater and/or hematocrit 45 or greater, I would need a phlebotomy of 500cc of blood. No big deal. Maybe needed it 4 times a year. BUT....I retired last year and my Medicare insists on another Hematologist . He's at MD Anderson which is a highly regarded cancer center. He does not believe in phlebotomies and has increased my Hydrea to 1000mg Mon, Wed and Fri. My blood counts have shown a need for a  phlebotomy for the past 4 months. I am also very symptomatic, ie. itchy, headache etc.. I am scared I'll have a stroke. Have been researching constantly and phlebotomies to keep H and H down are the norm along with the Hydrea.

RE: Polycythemia Vera

by GUSRENTIT on Tue Apr 09, 2013 12:50 AM

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Karole, I have refused to do any drugs(kind of), it's been kept in check, sort of, with CBC's and blood sucking every week if above 54, bi weekly if 50+ and monthly if below 50. In the last 4 months it's been going up slowly, but sometimes for no reason, it shoots up like crazy, I've had it go up from 44 to over 50 in 3 weeks, then sometimes, it only goes up 1 to 2 points a month.

As far as drugs go, I do take Aspirin 650mg a day, and 15 grams of L-Arginine, plus 22,000 IU of vitamin D-3, 3,000 IU omega 3, and 120mg verapamil at night. But Docs think I also have something else going on in my system, so we are still testing, for every known bug on earth. Beta blockers almost killed me, then they put me on Varapamil @ 120 mg x 3 days, that almost killed me. I'm NOT doing well,, BUT much better than a year ago. Now we are looking into Fungal lung infections, since I have been exposed to it over the years.

Contact me any time,

Gus

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