Once again there’s a weather change from hot to cold, it’s windy and I have trouble sleeping great time to research! 🙂
I found here that in human testing CoQ10 has actually reduced platelet size, aggregation, stabilizes cell membranes and also:
“Platelet aggregation plays an important role in the development and progression of numerous cardiovascular diseases (8). Free radicals are established promoters of platelet activation and have documented strong proaggregatory properties (9). Moreover, oxygen radicals could modulate platelet surface selectin expression (10) and could enhance P selectin-dependent platelet-mediated leukocyte rolling (11). Peroxidation products stimulate platelet-release factors and activate membrane glycoprotein IIb/IIIa (GP IIb/IIIa) (12). Therefore it is reasonable to expect that one mechanism by which antioxidants may produce clinical benefits in patients with cardiovascular diseases is through an inhibition of platelets.”
I have signed up to a combination Clinical Trial (CT), which uses Navitoclax in combination w/ Ruxolitinib, which I am already taking... The Navitoclax is supposed help reduce the Platelets... So, I guess we shall see...? Hopefully, the CT will commence some time around the end of May?
Thankfully we are well. Austria is apparently one of the countries worldwide that deal with this quickly and with discipline. Covid cases are shrinking steadily for the past 3 weeks. Germany’s going up again.
Wow! Thank you for taking a plunge to help researchers and eventually MPNers. Courageous. I’m sure you have informed yourself well. I will pray for you and for this CT.
Just having a read through now... Never heard of this before... So reading it through thoroughly might take me some time... Seems interesting thus far...
Let us know how you feel on it. I felt a change within the first week. My husband takes it (58) and my daughter 16 (fibromyalgia and EBV). It made a difference for both of them. We’re all on 25mg of a very good source including Açai and Hawthorne berry. English company called mount Naturals.
You’re right. Most doctors don’t know about CoQ10. I’ve been on it for 2.5 years. When I go off of it for a few days, I get tired quickly. If I go on a hike (2hrs), and I take an additional 25mg of CoQ10 an hour before, My body walks on its own and fast. 🙂
Will do! I'm taking 100mg a day in one tablet. It would be great if what has been reported in this study does happen. Only diagnosed recently in March this year but platelets have been going up. Would obviously like them to come down again.
If you have not had any TIA episodes many hemos accept up to 1000 thrombos with only a baby aspirin treatment. Without and heavy meds. I be had TIAs therefore take Anagrelide, (best for me) and we keep the blood from 550 to 800. 3 pills daily. If I take 4, I have heart pounding. My thrombos fluctuate.
Each person is different and I personally find it’s really important to get to know yr body really well and how it works, keeping a tab on thrombocytes and important blood work: liver, CBC, kidneys (if on meds). Exercise, good clean foods, a happy spirit and rest are really important!
Hi Anag, sorry for the delay on getting back. I half write something then have to go do something else... I am sorry that you have experienced TIAs. Thanks for telling you experience and what meds you are on. I have to say I feel like I have come to terms with ET then something just hits me but doing everything to stay optimistic. I excerise and est clean so that's a good start and since ET in March I have started taking various supplements. Q10 being one of them. Am I suppose to avoid foods with Vitiam K in do you know? Or is there certain foods I'm suppose to avoid? This is the bit that confuses me at the mo. Like everyone here would like to lower possible platlets naturally if that was at all possible and stop or slow progress. I that was at all possible. Hence why I'm looking at various supplements. Thank you for welcoming me.
I avoid vit K. As soon as I eat dark greens, broccoli, etc. or sweet potato or papaya, my thrombos soar. Absolutely off limits. My first 4 doctors didn’t believe that. My present haemo does and very much. There are just too many conventional school medicine hardliners. I’m sick of them, although many are in my closest friends’ circle. Fortunately, my 1400 pages of health notes on alternative care and the fact that I’m doing so well, as is my family and friends (who have all kind of autoimmune conditions), my stubborn doctor friends are starting to follow suit for themselves and families. Food is so important!!
I finally have all my amalgams out and as of coming Monday, 8 of them will be Finally sealed with ceramic inlays! The last 3 teeth will be done in October. The mercury war has been a tough road! It has robbed me of my brain half the time.
I will be starting a parasite cleansing soon. We, in the west are ridden with parasites (Anything from simple cells to 16inch worms and we don’t know it. They cause havoc and we don’t recognize them. Parasites and Candida overgrowth are very prevalent, when we have heavy metals in our system. Taking out the heavy metals makes the parasites aggressive and it’s a tough ride sometimes, but we have to hold through.
Thanks for getting back. As per your mention of the q10 study. I have been taking albeit only 100mg a day. I ordered 200mg tablets so will start those soon as and let you know the outcome although I'll only be taking them for 2 weeks before my next checkup. As for Vit K. Do you mean you avoid the vitiam Vitiam K or food that has Vitiam Kin it? As there looks like a lot of food wit Vitiam K in it. Also what about Iron? Sorry for the questions just trying to gain as much awareness as possible to keep platelets lower than they have to be.
Wow! 200mg is a lot of CoQ10. Do you have an alternative doctor overseeing that? I had a blood test to check my CoQ levels and I’ve finally Almost enough. I now just take 25mg from a very good source, which actually comes from England. Terra Nova CoQ10 with Hawthorne and magnesium. It really aids absorption. My iron and ferritin is really good. I never really checked regarding our illness in relation to iron levels.
Of course vit k is in many foods. I avoid the ones that have tons of K in them. The top K foods. I was in Korea and discovered Perilla leaves. Delicious. They are actually sesame plant leaves. I tools two bags of them with me. Well a month later disaster struck With thrombos at 909,000. It was the K in perilla leaves. I almost wept knowing I would be eating them again. I just love good food. 😁
Hi Anag, just thought I would let you know that I had my first 3 month check. My platelets have come down from 638 to 544. Which is great news. Now was this because I have been taking Q10 as per study, or the fact that the last time I had my platelets checked I was just getting over a bad cold and the shock of finding out I had ET. Or it could just be the natural up and down of platelets that also happens. Thanks for the inf on Vit K. That is very useful to know as I'm veggie I do like to eat a wide range of veg but might just limit high k foods for now. I also update my haematologist on all the supplements I am now taking and experimenting with. I have no alternative doctor for this as yet. That's my next step I think. At my next appointment I get be getting my bmb done. Hope you are keeping well. E
I forgot to answer you on this one. My platelets ho up and down a lot. I’m a jumper. Some are completely stable and need 2 checks a year. I get checked almost every month and they go up and down up to 300. since you are still shortly after your diagnosis, you don’t really know how your body works, long term. You’ll know more once you’ve monitored for at least 9 month. Then you start recognizing tendencies.
Stress jacks up my thrombos, for ex. I had a TIA at 823. 2 days later, I was diagnosed at 909.
From the long talk we had on zoom, I know you are doing a lot for your health. The steps you’re taking and will continue to take will definitely pay off in the Long run. Im also doing well.
Just one really important point. Try to do this as efficiently as possible and as easy as possible. Th as t will give you more freedom and Time to relax. Down time is healing time!! Stay off the fast train. It’s one of the things that got me sick. Let go of all unnecessary stress factors. Be thankful for even the smallest joys in your life, like slowly crunching a juicy carrot! 😁
Hi ya! Great to hear from you and so glad that you are doing well. I hope that you are getting to do some fishing on ur boat? I hope that the steps I'm taking will help but I have the feeling that I could do more. As for stress yes I would completely agree. I dont know if it increases my platelets but I dont feels good when stressed so I feel this is the area that I might need to overcome next. Defo need to make sure that I do things as efficiently as possible too so thanks for that! As you know I have a nutritionist now who is educating herself on ET and MPNs and crazily has just completed a course on understanding bloods. So I have asked for all blood results now. To keep track of and understand bloods better myself. She also mentioned the possibility of taking medicinal mushrooms but no certainty on that yet and only mentioned. Tips and tricks always welcome as you have done so much yourself to get to the point that u are now at. As for platlets mine went down at next check but not sure if that was Q10 or the fact that I had a heavy cold just before last test....As everyone says here it's about trend over time. I have a saying. You better check yourself before you wreck yourself. Not sure I have stuck to this very well but I am trying haha!! Speak soon. X
Only caught a few fish. 2 meals for the family. Haven’t really tried. Just enjoyed the mountains.
I bought a summit Regarding early childhood traumas. I’ve had my share. Have started slowly training this stuff out of me. You could look into „tapping“ to deal with stress.
I did mushroom for a while and had much diarrhea. I did Reishi and Lions Mane. Well, my Imupro Test showed that I have a mushroom intolerance. My thrombos didn’t go down. If you do a two month treatment, let me know. Am interested.
I have a diet specialist, but she doesn’t know a thing about bloods, but cured so many of my other problems. Let me know if she’s helping you! Sound promising!
Yes. A cold and other infections can raise the thrombos. Funny my period never did.
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