Polycythemia Vera

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RE: Polycythemia Vera

by GUSRENTIT on Sun Jan 12, 2014 07:17 PM

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On Jan 12, 2014 4:37 AM janets wrote:

I am a 54 year old depressed woman! I have PV , was diagnosed about 6 years ago, never knew about this, random blood test was very screwy, hence, this led to my diagnosis. I take hydroeria but I am noticing my hair is getting very thin..also, as described by some others, I have no energy, out of breath, etc...I am a jersey girl and when I went to the beach this past summer, trying to walk on the sand was trying! Never before was this an issue....I am always tired...but supposedly I am doing good according to my doctor..second opinion? Please advise!

Janets, so sorry that you feel so bad, been there done that. I still have problems with breathing, and lack of energy, other symptoms have gotten better. I'm not on any drugs at all for the PV, I get a CBC once a month if my #'s are under 50, if over 50 I get a CBC every 2 weeks, if over 50, I see the vampires, and have a pint of blood sucked out, I only had one taken out since 12-2012, however there is a catch. The catch is, I have been dealing with severe intestinal problems, for almost 2 yrs.. In the last 2 yrs. I have been treated by 9 Docs, 6 of them GI specialists, I've had so many tests, it's not even funny, every week or so for the last year and a half, I've had 4 to 8 tubes of blood tested, and many other humiliating tests. So I really had lots of pints taken out over that time. All these docs, and they can not find what is making my guts hurt so bad. Been on several antibiotics and god knows how many BS RX's, some helped, some did nothing at all, one RX cost $1500 for 30 pills @ Wal-Mart another cost $900 for a month, the last one I took was a bargain @ only $380, and I still feel like crap!  In the next 2 weeks alone I have 4 doc appointments, and 6 tests. I will report in as the results come in. I highly recommend that you try L-ARGININE 5mg 3 times a day for a month, I currently buy "Cardio Defender" online it's $20 with free shipping on $50+ order, OH this one tastes good, the stuff that you get at the local vitamin store tastes so bad that you rather feel horrible than take that stuff.

 Good luck, and if you have any questions, just ask!
Gus  

RE: Polycythemia Vera

by karen59 on Mon Jan 13, 2014 04:47 PM

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Hello Janets. I, too, am a 54 woman with PV. I have had this for 25 years (first diagnosed in 1988). I am on Hydrea and a baby aspirin. I became very depressed when it became clear almost 2 years ago that because of all of the symptoms that I was experiencing, that I could no longer work. I stopped working and applied for social security disability, in which I just won my appeal. I experince the same issues as you do, no energy, finding being active nearly impossible, itching, fitful sleep, bone pain that has become excruating, appetite that comes and goes, nausea...the list could go on and on. I have also been diagnosed with cirrohsis of the liver caused by the clot that was found when I was first with PV. I sought out a therapist and psychiatrist due to the depression. It was so severe I was close to becoming totally housebound. I was counseled on how to deal with a disease that will never go away, and given medicine to help deal with the mood swings and anxiety, as I told them I was very afraid of dying. This regime has worked for me. I must say that I periodically have "down" days, but they are few and far between. Please know that you are not alone and try not to isolate yourself. Once isolating yourself begins, it is difficult to getting back out of your home. I also do what I can, when I can do it, and try not to beat myself up over things that I used to be able to do. Please feel free to contact me whenever you need a shoulder to cry on, as I would be happy to listen.

RE: Polycythemia Vera

by janets on Sun Jan 19, 2014 02:31 AM

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Thank you so much for replying ...much appreciated...I also feel like I do not want to leave my house, but I thought it was due to my weaning off Xanax this summer...another story, but I am noticing pretty bad hair loss all of a sudden, should I look into hair extensions? Lol

RE: Polycythemia Vera

by angelamay on Mon Mar 17, 2014 07:18 PM

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I am a 60 year old women and was diagnosed about 12 years ago with having pv the only medication i take is 75 mg of asprin daily and venosections every 4 months now .  I have a lot of bone and joint pain to which i take numerous pain killers and anti inflamatories i try to walk outdoors daily for exercise.  I read somewhere that it is good to eat red  berries and drink red grape juice too as it helps to make your blood alkali from acid which hels to fight the pv.  I had a bowel problem too but in the end i had a clear out for investigation and been ok since .  I have developed acid reflux too and have to take omiprazole to stop it , i on know if it is relzted to pv or no i never feel my drs tell me what i need to know. I have alo noticed i am shedding hair fast and my nails break easily, again i dont know if its because of the pv or not. I suffer with depression so take antidepressents, i tke antihistamines for itchy skin at times and i havevto watch my diet o keep my weight down due to the pain. I wonder if th drs really know enough about pv.

RE: Polycythemia Vera

by janets on Thu Mar 20, 2014 03:51 AM

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so happy to hear from someone who understands...last Saturday night, friends invited me to go out for a few drinks...i declined...made up some excuse...i somehow feel trapped in my mind that i do not want to leave my house!! i have an appointment on Friday for a phlebotomy...just had one done 3 weeks ago..here i go again! hate it since i am known as a "hard stick"

RE: Polycythemia Vera

by nksood on Sat Sep 06, 2014 08:49 AM

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Hi Casey

I am suffering from PV for last 2years,i have gone thru your thread & am impressed by your response so thought to write this.I am taking wheatgrass juice for the last 2 months & other alkaline foods too & i feel very fit except getting cold feet.I have got about 5 phlebotomy done so far.I totally agree with you that to get rid of any form of cancer we must get rid of negativity & attract positivity- though easier said than done!!!I am very glad to know you got rid of your cancer.May God bless you.


RE: Polycythemia Vera

by healing1 on Tue Sep 09, 2014 04:35 AM

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I'm sorry to hear you have PV. It appears to be a rough road at times. Do you get puritis (spelling?)? I have been able to help my husband a bit with that and joint pain if any of those seem to bother you. Thank you for your comments, they touched my heart to read them. There is also a Facebook page for PV that may be helpful for you.

I continue to study and learn about what could help reverse this illness for my husband, if not lessen the symptoms. We are currently doing an eleimination diet to check for food sensitivities and looking at ways to heal the gut. Are you a doctor. I have been studying functional medicine and find it fascinating.

Be well, Casey

RE: Polycythemia Vera

by nksood on Wed Sep 10, 2014 06:56 AM

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Do not feel sorry,I have no pruritis in fact I feel great except for as I told you my feet get very cold in winters(i wear 2-3 woolen socks but no use!!!) & lately I get tiredness in lower legs.Very kind of you to extend your help, please include me in your prayers.I am a doctor.I do not know functional medicine : what is it about.I have starting believing in naturopathy.I can suggest fresh wheatgrass juice for your better half.I particularly liked your idea about writing on a board I think you meant positive affirmation,can you tell more about it?Thanks again for your kindness.

RE: Polycythemia Vera

by hohjoe on Tue Sep 16, 2014 01:53 PM

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I just found this site doing a Google search.

 

I am a 62 year old male and also have PV, although I don’t have much in the way of symptoms. I was diagnosed, a few years ago, after having elevated red blood cell counts for a few months in a row. I see my GP every three months for med refills and she always takes blood and sent me to an oncologist after multiple months of elevated red blood cell counts.

 

For me the treatment is a phlebotomy. Initially I visited the vampires for treatment every week until my numbers went to an acceptable level. Then I was going every three weeks, then four weeks, then two weeks, then three weeks, and now I’m back to every two weeks. I can’t get a handle on what changes and why my count fluctuates over different timeframes.

 

I went for bloodletting a few weeks ago and my count was high for the third three week checkup, so it was back to two week checkups. The last two, two week checkups my numbers were well within range, though elevated over the two checkups. And I don’t understand why I have high numbers over a nine week period and then the numbers drop and stay low for a month. I track 98% of what I eat and drink, and like most people it doesn’t vary much, so I don’t think it’s what I eat. I don’t track the amount of water as well as I should, but I drink a lot of water. After morning coffee water is all I drink; except for the occasional adult beverage. If I could point to something that kept my numbers low I would do that all the time.

 

One of the things I found interesting reading through the replies was the mentioning of cold feet. I have cold feet and have for the last year or two. I have kept my feet covered with a folded blanket at night for a number of years and this past winter I started wearing winter socks to bed in addition to the folded blanket and now I wear sock to bed all of the time. This summer I’ve worn lighter socks with the blanket and I can’t sleep without them. The few times I tried to sleep without I find I wake up with cold feet in the middle of the night and have to put socks on just to go back to sleep. Maybe the PV is the cause.

 

When I first learned I had PV it was late on a Friday afternoon and I couldn’t talk to the doc until Monday, so I went straight to the Internet. When I found out PV was a cancer I had a miserable weekend until Monday when I could talk to the doctor and get official information. The Internet can be a cold and lonely place and too much of too little information can be a very bad thing.

 

I guess this is sort of long; anyway, I’m glad I found a place where I can commiserate and I wish everyone here the best.

RE: Polycythemia Vera

by nksood on Wed Sep 17, 2014 06:39 AM

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hi 

i am 66 yr old male (with cold feet!!!).i have undergone 5-6 phlebo till now in 2 yrs.i have thinning of hair.nowada ys i am taking naturopathy & feel much better.my suggestion to all pv patients is to be positive.First step in that direction is to stop calling  doctors vampires,they are doing their job & trying to help us.I may be prejudiced because I am a doctor!!!!!!!!!!

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