Alternative treatments

[Boss1]

I have been diagnosed with PV in August at age 52 with no previous health problems. A bit of a shock. I'm use to alternative treatments for all kinds of ailments and healthy diet and as soon as I was diagnosed went on a super healthy diet and took herbal treatments from a professional herbalist and accupunture and although I'm on aspirin I have refused venesection for the moment. My haematocrite count has gone slowly down and so have my platelets until Christmas where they rose a little. Anyone out there interested or have similar stories?

[PVPVPV]

I was diagnosed with PV in 2009 at the age of 56. My doctors brought my haematocrite down and kept it down with venesections until 2012 when I started hydroxy. I have a very good diet and live an active life and think this has helped me remain practically asymptomatic. I feel very well. However, I too am interested nutrition and alternative or supplementary therapies to help combat this condition but the only things I have managed to pick up when looking round is some examples of good nutrition eg pineapples to combat mouth ulcers and a product called fruitflow as an alternative to asprin. I would be very interested in what other people think about this and also to see your condition progresses, Boss1. Regards.

[Boss1 in reply to PVPVPV]

Hi there PVPVPV. I have adopted a diet that is good for the cardio vascular system generally. No red meat, high intake of vegetables and fish oils, nuts, some whole grains. Hardly any processed food, especially those high in hydrogenated oils such as chips, crisps shop bought cakes. White carbs and sugars down as much as I can do! I allow myself red wine and coffee only at the weekends and just a little. I'm allowed dark chocolate (over 70%). The 2 Haematoligists I've seen admit there is a link between hydration and diet to the blood thickness but won't go any further on this as they have to go on 'proven' research. I'm increasing water and taking Olive Leaf (for the health of the blood vessels and much more) and Ginko (said to act on platelets and much more). There is no proof in the Western medical sense of the word but much written and experienced with regards to these. I'm just going to see what happens over the next few months. I cycle a little everyday and like you, I'm positive this has had an effect on my symptoms. Some tingling after a shower but it has lessened. Headaches and visual disturbance have gone. I feel totally well at the moment but I will go with recommended treatments if the count raises much more. I will continue with the diet and herbal treatments anyway for this and to stave off any other nasties! I will keep you posted!

[ainslie in reply to PVPVPV]

did you replace asprin with fruitflow, I take both

[fleetpete]

Hi Boss1, I was diagnosed in 2004 with PV; been through the venesections & have been on Hydroxycarbamide since late 2006. My biggest problem is periods of extreme tiredness - I'm tired all the time but have these periods with no warning...completely 'wiped out' for a couple of days at a time. Other than that, things seem to be on an even keel at the moment - fingers crossed! I do feel (and hope) that there must an 'alternative' treatment out there. I'm a pensioner & on a fixed income so can't afford to pay for e.g. Acupuncture & our local NHS don't pay for alternative treatments unfortunately. Again, I would be interested in any thoughts from other bloggers...

[Boss1 in reply to fleetpete]

Hi fleetpete, I'm new to all this but I have experienced such a change in energy levels with adopting a very healthy diet and small amounts of regular exercise a day (I not usually the exercising type!). I've read and heard that these treatments can wipe you out and the last thing you will probably feel like is a short walk but a little every day rather than anything big, I think is key. It's the foods high in carbs eaten without protein that have wiped me out in the past and now I've cut them down considerably, I feel better. See diet info with reply to PVPVPV. Regards

[Michael56]

Boss1, if the self-treatment you have taken on board helps, good on you however, please don't ignore the experts here. Each case is different but can have the same outcome on your lifespan, your choice but please, consider the easy option of the venesection to take proper management of this, I was diagnosed at 49 and am now 57 and so much better, now on Hydroxaria and it works for me, good luck and stay positive!

[ainslie]

that's very interesting, I too have PV and am looking at all the alternative treatments, I hve to have venisection sor my Hct rockets, I am interested to hear what super healthy diet you went on and what herbs you received and from whom, also what kind of acupuncture, I am not sure if the moderator on this forum is keen on alternative stuff so my e-mail is [e-mail]

[Boss1 in reply to ainslie]

Hi Ainslie, apologies for such a late reply. I realise many on this forum will probably see my approach as downright reckless but I just wanted to put off treatment just while I have a window of opportunity and I am lowish risk. I know things may well change and I certainly will say yes to venesections if my count rises much more. I am seeing a professional herbalist who is certainly not advising I don't take conventional treatment. I am on an 'anti inflammatory' diet which is good for the cardio vascular system in general. No red meat, loads of veg, no hydrogenated fats and oils found in most processed food (especially crisps, buscuits, breakfast cereals, cakes). Nuts, loads of fish and fish oils. Little dairy. A little red wine and a little high cocoa chocolate allowed! Regular gentle exercise every day. Acupuncture every 2 weeks. I feel very well and my symptons have subsided.

I've seen 2 haemotologists who both admit there is a connection between hydration and diet with PV but won't go further on this as there is nothing 'proven'. I've raised my water intake. I'm on Ginko and Olive Leaf which both have loads written with regard to working on the blood vessels and the blood system and platelet count. There is very up to date research indicating an inflammatory connection. For me, I believe the body always tries to rebalance itself when given a chance and no one's explained to me how my count could have gone down. I'm very new to this and if this doesn't appear to work I will still continue with my treatments mentioned here alongside conventional ones as holistic thinking has helped me so much with health issues in the past. It's a shame we can't have a clone of ourselves so we could do a 'controlled' experiment!!!!