Diet and natural remedies

Just Plebotomy in this initial phase (hoping this will be sufficient to master the condition). 

I forgot to mention the standard therapeutic dose of acetylsalicylic acid. which in my country is 75 mg/day.

I am in UK and I have been on 75mg of aspirin and phlebotmy as and when the hospital decides that I need one for about eighteen months.

We are all different, RedDragon. Our symptoms vary and our treatments vary. Some of us just have high red blood cell counts, some that plus too many white blood cells and some, like me, who go the whole hog and throw in a bucketload of platelets for good measure.

I have a consultant tell me that my current regime is fine. I have had one tell me that I really must go onto daily Hydroxycarbamide tablets, purely because I hit my 65th birthday. I have had one tell me that current thinking is not even sure if Hydroxycarbamide is the answer to my problem with high platelet counts. I have a deep antipathy to drugs in general and I have held them all off so far.

Who knows if I am doing the right thing or not if even the consultants can't agree?

You must listen to all the arguments, read as many papers about the disease, its treatment and its course and make up your own mind. Only you know how you feel. 

I am a vegetarian, almost vegan, and have been for a long time. So my diet is naturally low in several things that are considered to be off limits, such as iron. I used to do a lot of hill walking but now find that I can only do moderate walks of about four miles. I try to keep active, even when it feels like hard work, as somehow it feels like a good idea to get the blood circulating as much as it can.

Good luck with your voyage of discovery, whatever path you take on it.

 

Thanks Angela for your good advice and considerations! It's getting clear that you have to follow your own judgement, of course with the consultants recommendations in the back of your mind. It is interesting to hear that you are a vegetarian/vegan. I was wondering if my over-consumption of red meat had anything to to with this but I guess not. Recovering from mercury poisoning som years ago got me to avoid eating fish. Anyway, what causes the condition is one thing, but what corrects it might be another thing altogether. I think I will always try finding a way to recovery, or at least to a reasonable way of life.

Take care. 

I too have mused over what might have caused me to be the lucky one to get PV. 

I have read lots of possible reasons for its sudden and surprising appearance in later life. One report I read recently said that, as our body's cells are constantly being replaced, there is quite a reasonable chance that they will spontaneously mutate during division. Sometimes these mutations are so insignificant that they have no effect and sometimes they affect something important like a protein that controls bone marrow production.

I used to wonder about whether my childhood in a heavily polluted industrial city had had anything to do with it. But after hearing that people who grew up in pastoral idylls such as the Peak District also come down with this I am coming to the conclusion that it is probably just an unlucky roll of the dice with cell divisions. The older you get, the more chance there is of a dodgy mutation taking place. That would explain why it is usually diagnosed in later life and why very few young people have it.

Nothing that I have read tells me that there is anything that you could have done differently before your diagnosis.

Now that you have it, you are stuck with it. All you can do is try to mitigate its effects.

Do you know if you only have high red cell counts or if the white ones and the platelets are busy too?

Hi Angela,

So you are not on holiday then.  Trust you are well.  Your posting is very wise and thought provoking.  I concur with your views entirely.  Zap and I seem to be on a private excursion of late so it is unlikely you have encountered the repartee. It hasn't been particularly good weather in these parts for a couple of weeks now.  Hope you have something better in the dales.  How is the garden flourishing ?  Keep well and happy.

Peter.

Hello Peter,

I took a little time out of the forum and I am glad that you and Zap have found other things to chat about besides feeling grim.

Today is the first day of the Bakewell Show and it has been wall to wall rain all day. The car park is under water, people have abandoned their stalls, visitors wandering round in a mud bath. You would think, with this having been an annual event since Adam was a lad, in the same place every time, that someone would have cottoned on to the fact that British summers are wet and something needs to be done to make the Show accessible. 

The garden, needless to say is awash too but in the nicest way. Runner beans running amok, tomatoes literally bursting at the seams, sweet peas falling over themselves to be sniffed.  I hope your missus is having success with her efforts too.

I went along to have a fireside chat with my consultant the other day. We have a new National Gardens Scheme/ MacMillan Unit just opened a month ago at the hospital. Still in total chaos. A new unit with linen covered seats just waiting for a mucky raincoat or two to land on them, chairs facing away from the consulting rooms so you can't see or hear your name being called, a sliding glass front door that was nearly the end of me because I couldn't see it and not a sign in sight to tell you where anything was (signs would spoil the appearance of the place). Upstairs, the venesection ward, which used to be just for the giving and taking of blood, is now combined with the chemotherapy unit so the cheery walking wounded and the very very ill are thrown together into one huge room. A dispiriting experience for both parties. And it is now a locked ward but, although there is a receptionists' desk outside, they haven't got a receptionist so you end up waiting for some poor unsuspecting nurse to walk past to raise the alarm that you need to speak to someone.

I have had to wait nine days for a venesection even though the consultant wanted me to have one that day. Due to get one in a week's time. Though the appointment was only written on a notepad as their computer had crashed.

Heigh ho. Nonny no. God bless the NHS and all who sail in her!

Hope you are keeping on keeping on.

 

I'm still a bit confused about all the blood values since this is fairly new concepts to me. However it seems like the white cell and the platelets tend to follow along as the red bloodcell count spikes upwards (or the other way). I'm attempting to make some kind of statistics on my values, like a curve, to easier be able to follow the progression.

I am very interested in natural herbs i.e. that has the ability to neutralize or possibly reverse damages to the genes. Chlorophyllin recently got my attention (found abundantly in the algae Chlorella). Of interest also is the mushroom Chaga and the Ayurvedic traditional medicine Triphala, consisting of three different fruits. I will study this further.

Hi Angela,

Good to find you are still in reasonable shape.  I suspect that your confrontations with the weather are pretty universal in UK this year.  Apart from two weeks of summer a month or two ago it has seemed more Autumnal at times.  I hope your new health facility can do better than you describe.  It doesn't appear to have been too successful an opening does it.

Your garden must be giving immense satisfaction with all those crops.  Makes it all worthwhile.  My wife has been successful with her efforts although limited this year because of her spinal problem.  She has a couple of medical appointments coming up soon on this aspect.  Well I must say that the Ruxolitinib seems to be having a very marked effect on my well-being of recent times.  I seem to have been removed of the distortions of the HydroxyC. and I can only put this down to the effect of the new drug.  The change is quite marked really for I feel so much better.  Long may it continue.  My dosage has been decreased to an almost minimum and my blood tests are said to be the best the haematologist has seen with me so far.  I rest my case.  On reflection, maybe perhaps you should make your colours more avidly with the health facility.  It seems to need someone with your vitality to do a bit of shaking up.  I think Zap has been going through one of her phases of late but at last seems to be a little more cheery, happily.  She preferred to make contact via the personal link and that is probably the reason you have not noticed her comments recently.    Anyway Angela, nice to hear that you remain in good spirits and I hope your appointment turns out be successful, despite the delay you mention.  Good luck.

Peter.

Hello Peter,

Delighted to hear that you are finding your new regime works.

Hope missus can do the same soon.

Well I know all about hanging sweathy t-shirs to dry everyplace! But Omega 3 (taken in the evening) does help. That's why I was so frustrated when my doctor said no to that, with no ifs and buts. I kind of think a moderate dosage should be ok. Of course you have to watch out when spontaneous bruises start to appear.

Hi Peter, I am in contact with my Haematologist who seems to be very professional at what he does. He doesn't like to talk much about diet, but I can most certainly take contact with som dietitian if I need one. I am JAK2 positive though the doctor claims it's not from birth but acquired in later years. The question is what causes the gene to go defective. I do have my suspicions that chemtrails might have something to do with this but I will keep it under my hat, this consideration is probably 'out of bounds' in a forum like this.

Thanks. 

Thanks for your reply RedDragon.  There does seem to be a diagnosis for Acquired PV which could apparently apply to you.  There are others on this forum who occasionally mention it but mainly the source seems to be with the birth diagnosis.  It was about ten years ago that the JAK2 gene was identified as the primary cause of PV but prior to this the cause was not identified as so.  Since then some considerable research has been conducted into PV and other MPN's both in US and UK which has seen the introduction of new treatments being introduced.  I myself took part in one of the drug trials that were conducted.  Your query about the cause of the JAK2 gene defect can only be surmised really, and this must apply to other similar disorders that remain incognito.  The question of radio-active or chemical causes was raised on this forum a few months ago now.  In fact I mentioned that I had been  not too far removed from the Chernobyl disaster that occurred some years ago and wondered if this had affected my well being.  Nothing could be proved though and I am not physically aware that this could have affected me.  There is nothing wrong with mentioning items like this on the forum providing it meets the criteria set.  It might just throw extra light onto the genetic cause, who knows?  Stay well.