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People from eastern europe affected with polycythemia vera

Posted By John (La Paz, Baja California Sur, Mexico) on 01/05/2011

Polycythemia vera: This disease affects people from eastern europe and causes the bone marrow to make too many red blood cells. The only way I have been able to control it is to have a pint of blood taken every two weeks until the reading goes down to 46 then have blood tests every two weeks to see if it has gone high again which it usually does. Does any one on here know of a better wasy to control this. Thanks.

Replied by Montage (Los Angeles, Ca/usa) on 05/24/2011

I also suffer from the same thing and would be intrested in any input from the community that has found benefits.

Replied by Judy (Selma, Tx) on 07/24/2011

I found your site by accident, Thank you for being there>! I have had Polycthemia Vera for 5 to 6 years and is controlled by phlebotomies and now 12mg coumindin, I had a DVT in Aug 09 and now a superficial blood clot in my right bicep from the cuff being squeez too tight and now I have phlebitis in my arm.

I am working on getting my body in pH balance. My question is there any treatment for the PV?

Thanks and I am going to start the Lemon pH treatment.

Replied by John (Lapaz, Baja California Sur, Mexico) on 07/25/2011

Hi Judy from Texas, I have the same thing red blood cell count was high. Had to get blood drawn every two weeks for it to go to an acceptable level. I did some research, well lots of research, and found the nattokanase is a clot buster, so I figured what the heck why not. I started taking 500mg 2000F. U. About three months ago, my last, two blood counts where in the low normal range. This is the only thing I did differently, so I have to assume that is what did it. Of course you should first check with your health care practioner before you start on this. But it worked for me. Best - John

Replied by Judy (Selma, Tx/us) on 09/12/2011

hello john from La Paz: I am new to the computer world so had to find someone to help with all this lingo. Thanks the product you mentioned I am going to try it, how are u doing with your PV? I have never spoken to anyone that has this same problem, I am thankful that you have responded. I found out I had pv in '05 and have been seeing Count Dracula monthly for treatment. I am hoping that you can give me some insite as to how to better handle all this. Thanks jeverett from Selma

Replied by John (La Paz, Baja California Sur, Mexico) on 09/28/2011

Hi Judy: Sorry for the delay, but have been out to sea for a couple of months. My PV has remained in the low normal range so I am quite pleased with this. I am hoping that it will continue. How are you doing?

Replied by Bill (Redondo Beach, California) on 10/07/2011

I am 65 years pld and I have had PV for 9 years. I had a clot that caused a heart attack, which was when I found I had PV. I also see Count Dracula monthly and have a phlebotomy when the numbers are out of range.

For the past 4 years on a daily basis I take 500 mg of Hydroxyrhea, this has really helped lowering my platlet count. I do not take any other drugs except baby aspirin daily.

I also had a test to confirm that I had a mutation of the JAX Gene. Also had a bone marrow extraction for further study.

Replied by George (Turlock, Ca) on 01/18/2012

Told in 05 that I had pv, doing the pl-botomy but looking for something to keep the flow going. What's with the lemons?

Replied by Nornd (Rotorua, New Zealand) on 04/21/2012

I have been recently diagnosed with PV and my treatment is underway (venesection). Anyone know of anything else that will help please?

Replied by Robert (Lincoln, Lincolnshire, Uk) on 10/24/2012

Afternoon All, I'm 43. Been diagnosed with PV in 2005. Platelet count 650. For the first 3 years venesection has been done to keep platelets on lower level; managed to get the lowest level of 480. In 2008 started taking hydroxycarbamide 500mg/day, dosage increased up to now to 1000mg/day. Additionally, taking 1 aspirin/day. I feel in general very well (no complaints) but obviously concerned about the future. Determined, found website with herbal treatment. They promise a lot. I have huge doubts but..... Regardless, considering buying it shortly. Nothing to lose much to gain (?).

Wish you all the best, Robert

Replied by Kevin (St Louis, Mo) on 02/25/2013

I have been eating Kiwi's and they have helped me to reduce the frequency of phlebotomies. 1-2 a day.

Replied by Mike Giller (Denver, Colorado) on 07/26/2013

The gene malfuctioned because eating regular food the regular way does not provide enough bioactive nutrients the body requires. Free radicals and pollution damage the dna. Eating the best foods the right way turns the gene back on and repairs the damage. Cooking and improper processing of food reduces and damages the electromagnetism of the nutrients.

Replied by Rk (Big Spring, Texas) on 02/21/2014

Have had secondary pv diagnosed for almost three years. I have been stuck with monthly phlebotomies virtually since then and would greatly appreciate any possible suggestions to avoid having to do them for the rest of my life. Even with insurance, the costs of phlebotomies that often can pose many financial challenges. I enjoy supplements, try hard to limit prescriptions to only what is absolutely medically necessary and had seen nattokinease suggested before on other forums, so believe I'll try that. I read a detailed discussion about natto when first diagnosed, with the arguments favoring it greatly overwhelming those against and those arguments seemed more on the right track. The kiwi suggestion also makes a lot of sense--have tried to do this, but never for more than a few weeks.

Thanks everyone, for the input. Please post updates as often as possible.

Replied by Mike62 (Denver) on 02/22/2014

Rk: Cysteine is a rare amino acid denatured through cooking and eating cooked conventionally grown food causes a gene to mutate. Take 20g/day non denatured whey, 10g/day colostrum, and several green smoothies from organic baby leaves/day. Search raw food videos.

Replied by Inthesoup (Dundee, Scotland) on 06/09/2014

I am only 45, any other PV patients this age?

PV is a very serious illness, and if not treated, it may cause death. Unfortunately, PV cannot be cured, as it is a chronic condition. However, it is possible to get treatment for it, which will ensure a relatively normal life for those who suffer from the disease.Normal is estimated at between 7-15 years.

Usually a blood specialist (a hematologist) will care for a Polycythemia Vera patient. This doctor will have experience with the disorder’s complications, as well as managing the treatment.

The medical community has not yet reached a consensus on the optimum PV treatment, herbal remedies and diet over this time can make you feel better, but usually the treatment is based on individual needs. Unfortunately, long-term treatment is imminent for Polycythemia Vera. Vitamin B 6 has also been suggested as a cure. Sorry if its not what you need to hear, untreated though and case dependant you will cause more harm to you.........

Replied by Mona (Oregon, US) on 06/30/2014

Re: Polycythemia Vera: Diagnosed with high platelet and hemoglobin counts nearly two years ago. To maintain healthy levels on counts I've been taking Hydroxerea. I am experiencing unusual tiredness, shortness of breath and changes in the amount of urine. I had some of these symptoms when they discovered the high counts. I keep reading there is no natural way to control without the medication. Tired of symptoms and side effects. Am currently wondering what to do as my quality of life is being whammied.

Replied by Dave (Fountain Inn, Sc) on 07/01/2014

Hello Mona from Oregon,

Re Polycythemia...

I have a theory about this and other red blood cell issues. Causation is what I'm talking about and when I see a "mystery disease" I ask if maybe behind it is a fungus or virus. My own experience is that a fungus has caused some symptoms I've experienced for many years and so I started taking Colloidal Silver three times daily, two tablespoons with each dose.

I had a "Live Cell Microscopy" performed and at the same time an analysis of my food metabolism. That Live Cell Microscopy is fascinating. Well, a higher than normal level of fungus showed up that might explain the symptoms I am experiencing. (Nothing too serious but any condition can turn serious...so deal with the cause.)

My point in this is that perhaps the cause of the blood cell issue is at heart an infection...and if me, I'd figure that I had nothing to lose in taking orally the amount of CS I discussed, in the hopes that the condition might improve. I'd have something empirical to go by...the red blood cell count. So I'd take the CS orally for at least six months to be fair to the "experiment".

Mona, I'm sorry you are going through this. My suggestion for a possible help comes out of twenty years of experience and sometimes I'm right about CS/virus issues...sometimes not...but I'd figure...try anything that might help me. Oh, I always use the CS in an irrigation (nose and ears) a few times weekly to clear out the upper regions.

Replied by Matys (Miami, FL) on 08/28/2014

My mom has PV and she has been taking hydrea (Hydroxycarbamide) for the last 3 years. She was taking garlic and it was not good. Garlic thinned the blood and it seems the cells started to go crazy and started to make more platelets. The number was enormous, and after having a hemorrhage she was 5 days in ICU. Now, she is feeling tired, legs swollen and nails discolored and with pigmentation. What is barley?? Where I can get all of those remedies?

Replied by Amy (Wisconsin, US) on 10/23/2014

My husband, 47 years old had high platelets and now also has high red cells. Has anyone found anything that is helping them?

Replied by Gabe (California, US) on 11/07/2014

Polycythemia can be life threatening if not treated and anyone with the disease should be under the care of a hematologist. Folk remedies will not cure it but there are proven pharmaceuticals that help. Hydroxyurea will keep the disease in check and Interferon especially PegIntron can even cause remission in individual cases. There are experimental drugs in clinical trial phases right now. For more information go to mpdinfo.org

Replied by Bill (San Fernando, Philippines) on 11/08/2014

Hi Gabe...And a warm welcome to the EC website.

I admit to being a little confused about your own recommendations in your post, particularly for the use of pegintron for polycythemia vera. I must also confess to spending many recent hours searching high and low within the Merck standard of care manual and all I can find is that pegintron is generally only used with ribavarin against Hepatitis C. And for polycythemia vera, Merck also recommends treatment with aspirin, phlebotomy and myelo-suppressive therapy with no mention at all of pegintron.

Are you therefore recommending an off-label and unproven use of pegintron and isn't that against the law according to the FDA?

In your own post you say:"Folk remedies will not cure it but there are proven pharmaceuticals that help".

What exactly do you mean by "help"?

Another question for you -- Will taking pegintron, a form of interferon, act to consistently cure all cases of Polycythemia Vera?

Perhaps I should further enlighten interested readers, who I'm sure might be quite stunned, as I was, as to the numerous and hideous side-effects of pegintron on the human body.

From the actual makers and distributors of pegintron here is a quick summary and round up of some of the major side effects from that drug:

PEGINTRON can cause serious side effects that:

* may cause death, or
* may worsen certain serious diseases that you may already have.

Source: http://www.pegintron.com/peg/pegintron/consumer/index.jsp

Here is a more specific list of well-known and proven side-effects that pegintron is known for which is taken from a US lawyers website that specifically prosecutes against injury and death that is directly caused by pegintron as used by the medical profession:

* Neuropsychiatric events (suicidal and homicidal ideation and behaviors, relapse of drug addictions and overdose, psychoses, hallucinations, and bipolar disorder).

* Cardiovascular events (hypotenstion, arrhythmia, tachycardia, cardiomyopathy, angina pectoris, myocardial infarction);Endocrine disorders (hypothyroidism, hyperthyroidism, hyperglycemia, diabetes mellitus);

* Ophthalmologic disorders (decrease or loss of vision, retinopathy, macular edema, retinal artery or vein thrombosis, retinal hemorrhages, cotton wool spots, optic neuritis, papilledema);

* Cerebrovascular disorders (stroke);

* Bone marrow toxicity;

* Autoimmune disorders (thyroiditis, thrombotic thrombocytopenic purpura, idiopathic thrombocytopenic purpura, rheumatoid arthritis, interstitial nephritis, systemic lupus erythematosus, and psoriasis);

* Pancreatitis;

* Colitis (ulcerative or hemorrhagic/ischemic);

* Pulmonary disorders (dyspnea, pulmonary infiltrates, pneumonia, bronchiolitis obliterans, interstitial pneumonitis, and sarcoidosis); and

* Hepatic failure.

Source: Rottenstein Law Group LLP.

I looked up the cost of pegintron, and even from the Wallmart Chemist it will cost $3, 406.31 for 4 small packages (1 redipen) of Pegintron -- 120mcg/0.5ml. So you're paying thousands of dollars for microgram dosages of pegintron? And you would probably have to use pegintron for many months or even years.

So for all those unfortunate Americans who simply cannot afford this expensive type of dubious treatment it would seem to be a particularly useless route too pursue anyway due to its ridiculous cost.

That's why people come to websites like this looking for cures, which is a descriptive word that seems to be completely barren and missing from most authoritative medical Standard of Care manuals these days.

People are sick and tired of only ever having their serious autoimmune or idiopathic disease symptoms always just accommodated or managed -- with never a real cure in sight -- and at such a heavy and cruel cost.

Is it therefore any wonder that sick people come to sites like EC?...You may not always get cured, but you will get honesty(which costs nothing).

Replied by Om (Hope Bc Canada) on 11/08/2014

Hello Bill (from the Philippines)--

I want to thank you in particular for this post!

Frankly, I have no words. Or, I could tell you many things and comment but you are an aware human being who knows what goes on these days but knows about the purpose of life.

As my guru has said, people without compassion may look like humans but they are not human. Spreading such evil lies and proliferating damage to peoples' health takes a being outside the human realm. They have all the power now, but their time is short.

This is how I feel about this post. Thank you for all your good and compassionate work.

Namaste, Om

Replied by Gabe (California) on 11/09/2014

Bill,

Interferon is an excepted and frequently used medicine against P.V. Many insurance companies pay for it so for many patients it is affordable.

I never intended to quarrel over particulars only warn people that P.V. is caused by gene mutations and no natural cure was ever able to correct that. In the meantime mainstream medical treatment can help sufferers live a normal lifespan.

Replied by Gabe (California) on 11/09/2014

Instead of the Merck manual do a scholarly search of polycythemia and interferon on Google. I got 8200 results.Here are a few.

Pegylated interferon-alfa-2a induces complete hematologic and molecular responses with low toxicity in polycythemia vera

Interferon-2b: a new treatment for polycythemia vera

High molecular response rate of polycythemia vera patients treated with pegylated interferon??2a

Pegylated interferon alfa-2a yields high rates of hematologic and molecular response in patients with advanced essential thrombocythemia and polycythemia vera

Interferon- therapy in polycythemia vera and essential thrombocythemia

Long-term effects of the treatment of polycythemia vera with recombinant interferon??

Minimal molecular response in polycythemia vera patients treated with imatinib or interferonalpha

Possible selective effects of interferon ?-2b on a malignant clone in a case of polycythemiavera

Interferon in the treatment of polycythemia vera

Polycythemia vera treated with recombinant interferon?alpha 2a: Evidence of a selective effect on the malignant clone

Replied by Timh (KY) on 11/10/2014

Gabe: There is a direct and almost 180 degree disagreement between conventional medicine and natural or alternative medicine. In that divide, proven facts or scientific data are piled up (like the info links you just posted) on each side and contradict each other. It's like a liberal vs conservative divide w/ no resolve. It really comes down to ideological standards or belief systems w/ underlying intent; what one may commonly ask as "what planet are you from". The only resolution is each person or group or system has it's right to it's own opinion. And for those who digress on this formula and say me & my group are correct and everyone else is wrong, well it's called (free)radicalism, bigotry, extremism, fundamentalism. This problem exist abundantly in politics and religion.

How did Walt Whitman resolve this same problem of his day w/ the divide between the north and south civil war? Not either / or but both. Same for his religious attitude. In other words Walt is one of our great universalist.

da da da ...

Replied by Bill (San Fernando, Philippines) on 11/10/2014

Hi Gabe...We all appreciate that your intention was to help people.

But I was just questioning what you meant by "help". Regarding pegintron, there are many people who post on this website who have suffered with Hepatitis C whose normal allopathic treatment is by using ribavarin and pegintron(interferon). I think that even you must concede that this treatment is a very expensive, harsh and destructive treatment which does not consistently cure Hepatitis C but which, instead, is guaranteed to create a hellish quality of life through its drug use whether successful or unsuccessful. Meanwhile, irrelevant of success, failure or even death of these patients, the drugs companies still continue to fill their pockets.

Can any doctor possibly think past their own training, drugs propaganda and bias to see exactly where we are coming from?

It's really a question of trust:

https://www.youtube.com/watch?v=YiMpVUmRuJI

Where are the cures for all those autoimmune and idiopathic diseases that allopathic medicine still cannot cure after 150 years of modern medicine and the Pasteurian Germ Theory? Where are the consistent cures for Heart Disease, Cancer, Diabetes, Obesity, Hep C, Hep B, HIV and even the common cold or flu? A hopeless performance.

And yet the drugs companies and most doctors are regarded as the experts. Can anyone please explain to me why?

Have you ever heard of BHT(Butylated-Hydroxy-Toluene) curing Hepatitis C? Read the stories on this site and they will surprise you. With this extremely cheap protocol you just take two pills of BHT morning and evening everyday with very few side-effects.

Have you ever heard of Dr Burt Berkson curing Hepatitis C, Cirrhosis, Liver Cancer and Pancreatic Cancer? He cures it with simple ALA IVs, LDN, Milk Thistle, B Vitamins and his treatment is remarkably cheap as a consequence. See the research:

Dr Burt Berkson's Triple Anti-Oxidant Therapy

Dr Berkson's Protocol

Another question for you. Most recognized professions -- such as banker, lawyer, engineer etc are all performance related professions. Apparently this does not apply to modern doctors -- how could it ? -- when modern medicine is still so incapable of actually curing such a huge array of conditions and diseases and their patients never get cured or never improve or just die anyway? So I would conclude that any doctor's performance is certainly not related to patient outcomes and is more assessed by their local management as to the amount of drugs they successfully dispense to their patients. And as long as you follow the Standard of Care manuals then you cannot be prosecuted because these SoC manuals are all protected by law. That's why there are 125, 000 deaths a year in America caused by correctly dispensed medicines from doctors to patients.

Is that a record to be proud of?

I appreciate that you feel that pegintron would help someone with Polycythemia Vera but, without dodging the issue, what is your own solution for someone who hasn't got any insurance or who has insurance that does not cover the use of pegintron? Do you have a solution?

Do you even care?

Replied by Gabe (California) on 11/10/2014

Bill,

The standard care for P.V. is venisection (blood-letting) which is a known natural treatment for millenia. When it doesn't work anymore for a number of reasons, Hydroxyurea is the next choice of treatment. It is a relatively safe, effective medication and is cheap. I admit that Interferon is unaffordable to most and they have to use the above treatments and be under a doctor's care. By the way Interferon-alpha and pegintron is used in dramaticaly lower doses in P.V. than against Hep-C. and so the side effects are much less. And yes, I care a lot .That's why I ask people not to self-care with this disease. It can be fatal. I have no other agenda, I wish there were a natural cure for P.V. but none was found so far.

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