Hi everybody, I'm new here so I want to share my experience...will try to keep it short..
For 15 years my platelet count was 600+k to 800+k but no symptoms so I didn't heed doctor's advise to start medication. Went to 900+k and developed a wound in my little toe which couldn't heal and I experienced tightness in extremities.
Started HU 3 caps x 500mg with baby aspirin thrice a week. Suffered with mouth ulcers for 9 months but eventually no more after started drinking alkaline water. HU is very acidic.
Developed gastritis and my body constantly feeling very heaty all the time so I decided to reduce the drugs. After a couple of years stopped aspirin completely and in the subsequent 5 years I reduced HU from 3 to 2 to 1 because I felt weak and my immunity was dropping. Platelets kept shooting up as I reduce and with 1 cap my platelets was at 1,000K. Blood pressure is also going up probably because my heart can't support such thick blood and libido was also dropping.
Learned about an L-arginine product and what it can do for cardio health and went into an intensive program. My energy shot up very quickly as well as my libido and this encouraged me to try get rid of both drugs.
After stopping HU completely I experienced tightness and pain in my extremities and I tried to use aspirin alone and it worked! On the 4th day the pain will gradually return as aspirin can only last 3 days.
Now I am trying to get rid of aspirin as well by testing with some other natural products. Will keep you guys updated once I'm successful.
I dare do all this due to 2 things -
1) I was living without any drugs for 15 years when my platelet count went as high as 800+K,
2) I learned that in Europe, hematologists won't start medicating until 1,500k unless the patient develops a symptom.
Many doctors over-medicate as they only go by book but I am not suggesting anyone here to try what I did either because I cannot take the responsibility. Only want to share my experience coz some of you guys might find it useful. Also, I am a firm believer of using natural means to help myself as the drugs are extremely harmful.
Thanks for reading.
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dl640427
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I agree abou the meds. I wrote something like this in a support group for et, I was bashed for saying such a thing snd thrown out. They said hu is like a breathe if aspirin and not harmful at all. They act like drugs are wonderful. I'm doing what ur doing but platlets still climbing. What r urs now?
Hi am fascinated about your experience and your tenacity in having some control over your treatment. Please keep us posted with your progress and natural treatment
Really pleased to hear such positive outcomes congratulations! BUT there's always a but eh ...... I have absolutely no idea where you heard that; " ....in Europe, haematologists won't start medicating until 1,500k unless the patient develops a symptom." This is simply not true. We live in the UK and my husband is on his 4th haematologist in ten years (we move a lot) and every singly one works towards the 'magic 400/450 platelet count', and this means treatment. And many many people are walking around feeling well with this condition as very often there are no symptoms ........ until the heart attack or stroke strikes. So, as thrilled as I am for you, please do not encourage people to get off the meds - it might be okay for you, but certainly not for others. Hope you stay fit and active - enjoy your hard won 'freedom'.
Thanks for your kind wishes and no, I certainly am not encouraging anybody to stop their medication. We are all responsible for our own health and it's a very personal thing what we feel is best for ourselves.
The above article has answered my question about what level some hematologists will start treating because in my country all the 4 whom I have consulted had wanted to start me on HU when my platelet count was only 600k+. It was a passing statement I heard from one of them that the European doctors will only start to treat at above 1.5M as long as there are no symptoms, while the Asian doctors will start from 600k. A world of a difference isn't it? I guess I made the right decision not to be treated coz I have avoided taking HU for 15 long years!!
In the meanwhile, if ever I am successful in reducing my platelets further through natural means I will share again here.
I'd like to add that it's even more important for people like us who have these conditions to take good care of our cardiovascular system through the right diet, exercise, supplements, managing stress etc etc. Most doctors only know how to prescribe drugs and very few can teach us about nutrition and how to take care of ourselves from getting a heart attack or stroke. It is paramount that we keep our arteries clear & dilated, have good blood flow and reduce platelet inhibition as well as stickiness. If we don't take care even people with normal platelet levels can get a heart attack or stroke.
I would highly recommend a book by Dr Louis Ignarro who won a Noble Prize on his discovery of nitric oxide ie 'NO More Heart Disease'. Also, google The High Desert Heart Institute trials on how boosting nitric oxide can help with so many illnesses especially heart diseases, lowering blood pressure, preventing strokes and improving so many of our health markers including lowering platelet counts. Happy reading.
Yes I have also been thinking of stopping HU. I was diagnosed in 2016 with ETJAK2+ and my platelets at the time were just over 1000. I did not have any symptoms. I was put on 2xHU + aspirin per day. I have feelings of anger in relation to my treatment. I have never been able to find any evidence that high platelet count causes strokes, nothing on the Internet or from the medical profession. Not saying that this is not the case but the evidence has not been presented. I feel I have been intimidated into taking the HU. And when I go to my appointment, there never seems to be the time to ask these questions.
Where did you hear that doctors in Europe won't start HU till the platelet count is above 1500 and the patient is without symptoms? And what other remedies are you planning to take if you are stopping the HU?
You have asked a very good question because neither have I read or heard that high platelets cause heart attacks and stroke. Even my hematologist refused to give me a clear answer when I asked him this. And I have a similar experience of him insisting that I do a follow-up visit with him every month. I haven't seen him for years now but I will do blood work every few months to monitor myself.
You can read from this link about how a hematologist treats ET. If the person's platelet count is below 1.5M, below 60 years old and no experience of thrombosis he might only prescribe a low dose aspirin.
The idea is to reduce acute inflammation through a more anti-inflammatory diet and supplements, keep my cells less acidic, increase cells oxygenation & hydrogenation and keeping stress down.
I've had an experience of my platelet count reducing by 30% from a high dose of an L-arginine formula so I'll be resuming with it. You can read my earlier posts for more info on this. Besides this, I'm also taking some supplements that include algae and phytoplankton to develop healthy cells, omega and coconut oils, curcumin as it's highly anti-inflammatory, French pine bark, systemic enzymes and some other healthy stuffs.
Will also be balancing my constitution with some Ayurvedic medicines and yearly detox program. There are 3 organs that produce platelets ie bone marrow, spleen and liver so keeping these organs healthy should also be able to reduce platelet production.
There is variance of opinion regarding HU, but it has been a mainstay for many years for many docs. A bit of the devil-you-know thing in my view. Not all docs agree with routine HU use. It is mutagenic, carcinogenic, teratogenic, immunosuppressant, and potentially causes hypogonadism amongst other side effects. Since it is therapeutically weak, the doc has to keep you on the edge of toxicity for it to have max benefit. I d/ced HU on the advice of a MON Specialist. It seems that the risk-benefit ratio is unique to each person and one size does not fit all. I am glad to be off HU as I could not tolerate it. However, there are people who do benefit. We are each unique. I strongly agree with you about how each of us has to take responsibility for our own health and that we as the person with the MPN must be the one who decides what course of action is best.
Thanks for your articulate comments. I sure am not advocating to anyone to stop their drug. I am doing it because I believe I have reduced risks by undertaking measures to keep my cardiovascular system healthy.
What I would like to advocate though is why not try heal ourselves instead of holding to the common notion that we have to take the drugs lifelong and our illness can only get worse? Allophatic medicines definitely have a place for emergency situations and short term medication but lifelong?? After all, we are living organisms with divine intelligence that have healing abilities. Besides the discussions of drugs and side effects management I am hoping to learn from people who can cure themselves. It is not without reason that illnesses develop and we can look at it as signs that we have to make changes.
If our platelet count can go up and down as seen from our blood tests it also means there are factors that can drive them up as well as down. I personally have seen mine coming down by 30% with a high dose of L-ariginine and I've also read from somebody here that he noticed stress will make his platelet count rise. Simplistically put, we only have to do more of what that can bring the platelets down and less of what make them rise no? If even cancers can be healed naturally why not our blood disorders?
By the way, I'd like to highly highly recommend a meditation technique called Transcendental Meditation to release deep-rooted stresses and promote good health. This meditation had undergone more than 600 scientific studies in top universities proving its wide-ranging benefits and there is a long list of celebrities endorsing it including Oprah Winfrey, Russell Brandt, Hugh Jackman, Jim Carey, Elen DeGeneres and the likes. Amazing how our mind can transcend time space into the deepest level of silence residing at our source of thoughts which then enables our body to rest much deeper than sleep. As a result, the deep-rooted stresses sleep is unable to release get neutralized. This is the best gift I've ever received in my life.
I definitely agree about the power of the mind-body connection. We are whole beings mind-body-spirit. What affects one part affects the whole. Western medicine offers many amazing opportunities for healing, but does not have all of the answers we need. I am on to a new treatment regimen for the polycythemia that will be phlebotomy-only. The rest of my treatment will be to maintain good heath - physical-mental-spiritual. It turns out that the advice the consulting MPN expert gave me to d/c both HU and aspirin was quite fortuitous. I was just diagnosed with a brain tumor that is partially hemorrhagic. Taking a blood thinner is not such good thing at this point. Sometimes the "standard approach" is not best. It will be a bit of a challenge to manage two forms of cancer, but I am going to remain positive and take charge of my own care. Hopefully the tumor will be low grade and not require any aggressive treatment. I have learned from managing the PV and other conditions to take nothing for granted and to thoroughly research all of my options. I have become far more assertive with my docs and clear that I will be the one to make the decisions regarding my own care. I learned with osteoarthritis that Turmeric/Curcumin works way better than the synthetic NSAIDs with far fewer risks/side effects. All the best to you on your journey. Hope your alternative approach to healing works for you.
You have a lot to manage. From the Ayurvedic perspective high dosage of curcumin is probably not idea for those with weak livers as it is hot by nature and so is our liver.
I would like to recommend a couple of books by Raymond Francis titled Never Fall Sick Again and Never Fear Cancer Again. Many, including some stage 4 patients have been cured through his recommendations. These books are very comprehensive written on how to rebuild our cells as all diseases have to do with unhealthy cells.
Since you are a believer of the body-mind-soul connection I would also like to recommend Indian planetary astrology called Jyotish where you can get a reading of which planetary afflictions have created your health conditions and you can get a prescription of astral remedies to reduce their malefic effects. Healing from the subtle and refined levels are very necessary and effective besides getting treated at the grosser levels of our physiology. After all, everything is karma ie cause of effect which encompass every aspects of our lives, both inner and outer. If you are interested you can contact David Hawthorne at astroview.com who is the President of an astrology association of 800 astrologers.
I too wish you good support from Mother Nature for a speedy recovery.
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