Anyone remember me? I haven't been on the forum in ages. in 2012 Thrombocythemia Discussion Archive Forum

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Anyone remember me? I haven't been on the forum in ages.

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SallyN

Anyone remember me? I haven't been on the forum in ages.

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Posts: 78

Jun 4 12 7:52 AM

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Hi everyone,

Well, it's been ages since I have logged into the forum. I hope everyone is doing just fine, I have had a quick glance over some posts to see if you are all still here, and hey ho, I remember many of you! Roll

Well here is a brief update of where I am at today:

As many of you will remember, I turned down the conventional treatments offered at the hospital and with lots of research chose to experiment with Nattokinase instead.

Well, I am still taking Natto everyday (2 x 50mg mornings and 2 x 50mg evenings), I also take 1 x Oxy Powder at night and 1 x probiotics. I do take the odd aspirin now and again just for good luck (propably approx twice per week!

I eat a healthy balanced diet consisting of lots of dark greens and in particular, plenty of asparagus to help cleanse the blood.

Since taking Natto, my platelets have never been better, this could just be coincidental but for me, but I am convinced it has been my miracle drug.

I have my platelets counted regularly at me GP surgery just to keep an eye on things and my GP is very pleased with how I am doing.

For those of you who remember, back in 2008 my haematologist at the hospital wouldn't see me if I didn't take his advice and start low dose chemo', he was very much against my decision to take Natto instead even though I told him how well I was feeling since taking it and how my platelets had improved dramatically. I am now still only under my GP who keeps a very close eye on both my blood counts and I am sure he consults with the hospital for advice just in case he felt the need to refer me back to the hospital for further checkups, luckily my GP feels well under control with me and fully supports my decision to continue with Natto.

Here is my counts over the past years

		Diagnosed 2007

06/06/08	1,008	2008
	1,030	joined forum 08/08/08
05/09/08	1,075
10/10/08	1,175
26 October 2008
Stopped Aspirin & Started Nattokinase
10/11/08	853
24/11/08	809
09/12/08	702
22/12/08	701

07/01/09	730
20/01/09	817
05/02/09	802
19/02/09	841
31/03/09	712
08/06/09	876
26/08/09	719
03/11/09	744

15/04/10	684
04/08/10	633
19/10/10	573

01/02/11	556
28/07/11	504
15/12/11	639

02/03/12	515

I had a blood test taken a couple of days ago and will have results later this week.

As you can see, since taking Natto, my blood count is still gradually coming down.

My general health is improving monthly and I feel better than I have ever felt.

As I mentioned, this could be coincidental for me and therefore wouldn't suggest this a cure by no means. To my knowledge Natto has never been tested for ET. This is such a shame as this could be good news.

Does anyone else take Nattokinase daily? I would love to hear from you!

Sally

Diagnosed with ET 2007. I take Nattokinase daily, Aspirin twice a week and I'm feeling absolutely great!

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chocjan

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Posts: 249

Jun 4 12 8:59 AM

Hi Sally

Yes, I remember you and the discussions that arose about Nattokinase. I'm glad that your platelets have come down and that you are so well. Who knows if it's to do with the Natto or not but as long as you are doing well does it matter! Good luck and may your improved health continue

Best wishes

Jan

feelinggood

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Posts: 211

Jun 4 12 11:00 PM

Hi Sally,

That is great! I have been looking for something like this. What brand do you take? I think that is very important. Thank you for the information. I really appreciate it.

All the Best,

Sheila

SallyN

Nattokinase

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Posts: 78

Jun 5 12 10:52 AM

Hi Sheila

The Nattokinase I take is imported to the UK from America.

Allergy Research Group - Nattokinase - 50mg - 'NSK-SD' - 300 Vegetarian Capsules. They are very expensive but I wouldn't be without them.

As you can see from my blood results, I had lower platelet counts within 4wks and continued to come down slowly, but like I said this could be coincidental but for me it really does seem to make a big difference.

Good Luck if you decide to give it a try too! smiley: happy

Sally

Diagnosed with ET 2007. I take Nattokinase daily, Aspirin twice a week and I'm feeling absolutely great!

Marleque

[-]

Posts: 69

Jun 5 12 7:45 PM

This is so interesting Sally.
When I was diagnosed with E.T. last year I also refused to take HU even tho I was high risk. I knew it reduced our platelets but also did harm to our bone marrow.
I am a member of Life Extension and called them to see what they recommend in place of HU. They have researched supplements for years. This is what they recommended only if I would check with my doctor as they had not researched E.T.
For endothelial defense-- Full spectrum pomegranate
Nattokinase to prevent blood clots
Also Fish oil

Because I was newly diagnosed I had many questions for my hematologist and eventually just forgot to ask. Since I have an appointment for my next blood test and an appointment with my hematologist June 26 I will now ask and tell her of your success. I do realize everyone of us is different and all are different as to how we react to E.T.
The slides from the California seminar now indicates even males and females are different as to their E.T. Females have more blood clotting episodes.
Thank you Sally for your results. Will keep everyone posted.
Marlene

markejon

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Posts: 1359

Jun 9 12 4:09 PM

Administrator

Nice to see you back Sally.

Do you buy the Natto online? I did think about trialling it back then, but maybe now is the time to order some.

Do you mind if I put your counts on the member platelet comparison chart?

Mark J.

SallyN

Hi Markejon

[-]

Posts: 78

Jun 10 12 7:51 AM

Hi Markejon,

Hope you are keeping well smiley: happy

.

Yes of course, please do use my blood counts, the more trials, research and comparisons we can all share the better for us all.

I order my supply of Natto on-line at Organic Pharmacy imported from America to the UK http://organicpharmacy.org/ ,

Allergy Research Group - Nattokinase - 50mg - 'NSK-SD' - 300 Vegetarian Capsules.

Unfortunately they can take up to 4 weeks to arrive, however on two occasions they were a little later as they were held up in customs smiley: eek

.

I now keep a good supply at least 3 months and re-order in plenty of time smiley: smile

.

Sally

Diagnosed with ET 2007. I take Nattokinase daily, Aspirin twice a week and I'm feeling absolutely great!

KCFlorida

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Posts: 141

Jul 3 12 10:59 PM

Hi Sally,

I have wondered how you were doing, although I suspected you were doing well because you were very determined. You are not far off from normal range. So happy for you and your great results! Congrats!

Kara

SallyN

Kara

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Posts: 78

Jul 8 12 8:00 PM

Hello Kara,

Great to hear from you again! smiley: happy

How are you keeping? Are you still taking only natural remedies?

Would love to hear an update on how you are getting on and what remedies you are currently taking.

Sally

Diagnosed with ET 2007. I take Nattokinase daily, Aspirin twice a week and I'm feeling absolutely great!

feelinggood

[-]

Posts: 211

Jul 9 12 1:58 AM

I would like to know the protocol from everyone (especially Sally and Karen), who are doing the natural way. If that would not be too much of an inconvenience.

Thank you,

Sheila

PS I just heard from a study that Gary Null had on his radio station, that pomegranate juice, a glass a day lowers the platelets.

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KCFlorida

[-]

Posts: 141

Jul 9 12 10:16 PM

Yes Sally, only natural remedies. The only pharmaceutical I have used has been the chelation for my high mercury levels (which was taken on a temporary basis following dental amalgam removal). I can't remember when you were last on, but my platelets are now in the normal range (down to the 200s in 2010). I alter my supplement regime as needed but am currently taking: multivitamin, mineral, B-complex, zinc/copper, fish oil, Vitamin D, magnesium, calcium, wheatgrass powder, and apple cider vinegar. I sometimes take astaxanthin and Iosol iodine (topically). I take Yeast Cleanse or other supplements on an as needed basis.

I have expanded my diet as I seem to be more tolerant of foods that I was once allergic too but I still try to keep carbs to a minimum and keep it healthy and organic. (Finding that hard at the moment as we are vacationing in Ireland for a month - and my mother-in-law keeps sending scones down to our house!) : )

Sheila, not sure if you are referring to me (I don't see a post from a Karen?), but if so, I hope that answers your question as well.

feelinggood

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Posts: 211

Jul 10 12 2:05 AM

I am so glad your platelets are normal. Yes I was referring to you and thank you very much. I am going to start the vinegar tomorrow. Do you take a teaspoon plain or in water in the morning? I know what you mean about Ireland. You gave me a chuckle. My mother-in-law makes the best brown bread from scratch, out of her head and it is so good with homemade jam but I was off gluten the last time, it was soooooo tempting. How is the weather? Have a great trip. I think we are going over in Sept.

All the best,

Sheila

SallyN

Similarities to Kara

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Posts: 78

Jul 10 12 7:17 AM

Hi Kara

,

It is very interesting to see the similarities of what we both take.

I too drink plenty of Apple Cider Vinegar (with Mother as it really should be the blurred one which is raw unfiltered, and definitely not the filtered purified clear one).

I also take a Sardine Oil formula daily (Wild Anchovy, Herring and Sardine Oil) as well as a Probiotic Intensive capsule and a Magnesium Capsule (Oxy Powder)

On top of this each morning I have a brew of freshly grated ginger, a squeezed slice of lemon and honey, and of course Nattokinase - 2 x twice daily.

I do wonder if there is something in the similarities of our diets above that plays a large part of our lowering platelets smiley: happy

.

Unfortunately, I do still have amalgam fillings and really should consider having these removed. I will make some enquiries and seriously work on this after my holiday this month.

I am so pleased and very excited for you that you are within the normal range now, how long have you remained within this range and do you still see your Haemo regularly?

Can you pin point what you personally feel was the most influential part of your regime where you noticed the biggest change?

I will check out your other supplements and add this to my daily diet and give it a whirl to see how I go smiley: roll

. I am seriously not looking forward to the dental treatment as I am a bit of a wimp when it comes to dentists but I am determined to go ahead and do it smiley: eek

.

Thanks for your valued input Kara smiley: happy

.

Sally

Diagnosed with ET 2007. I take Nattokinase daily, Aspirin twice a week and I'm feeling absolutely great!

Last Edited By: SallyN Jul 10 12 7:25 AM. Edited 3 times.

KCFlorida

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Posts: 141

Jul 10 12 11:40 AM

Sheila, it must have been you who's husband was from the same part of Ireland as mine? From Donegal? Yes, my husband's mother makes a scone out of her head as well. Years ago, she made one with me (so that I could learn) and I had my pen and paper out to write down the measurements. She laughed and said she has no idea what the measurements are - she just knows when it's right. She made homemade jam as well. Lucky I am not as sensitive as I used to be. Regarding the apple cider vinegar, I will second what Sally said (unfiltered, unpasteurized, 'with the mother'). At home, I use Braggs brand. Over here, I found a brand called Biona. Pasteurized apple cider vinegar would actually be detrimental (flares up yeast issues rather than helping). I take 2 tablespoons in a little water at least twice a day, morning and night. That is my typical dosage if I am symptom free. If I am having any symptoms, I may take it 4 times a day (and I sometimes take it straight if I really want it to work). Brush your teeth after or at least swish some water to protect your tooth enamel. The weather here? It's terrible - LOL. We have had a couple of good days, but mostly rain and cold. I've doubled my Vitamin D since I haven't seen the sun in a while. We're having a great time despite the rain.

Sally, you may remember, I dropped my hematologist back in '05 and had my alternative doctors check my blood. My platelets have been normal since 2010 (actually before that, but 2010 is when I returned to the hematologist to get it on my record for insurance). How many amalgams do you have Sally? If you decide to get them removed, I strongly suggest doing a lot of research prior and find a biological dentist (who will use safer removal techniques) and finding an expert in chelation. I have read about some people getting better from other health ailments with amalgam removal alone, but personally I did not improve until I did chelation (perhaps over time, I would have, but I did not wait). Amalgam removal and replacement itself is not bad but my case was complicated with a root canal tooth that had amalgam in the gums around it.

I also take ginger and probiotics but not everyday (probiotics is something I would like to take everyday but I try to save money so I incorporate probiotic foods - sauerkraut works best for me).

SallyN

amalgam fillings

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Posts: 78

Jul 10 12 12:49 PM

Hi Kara,

I will certainly do my homework and research as much as I can regarding the removal of my fillings.

I do have quite a few of these amalgam fillings 12 or 13 I think, so this is quite daunting smiley: ohwell

.

Since having ET, I have only had one replaced which I opted for a white filling and was hoping to replace the others as it was needed, but now want them all removed and replaced sooner rather than later.

I will keep you posted on my progress and if there is anything more you can advise me on, please let me know as and when you think of anything.

Thank you Kara smiley: smile

,

Sally

Diagnosed with ET 2007. I take Nattokinase daily, Aspirin twice a week and I'm feeling absolutely great!

feelinggood

[-]

Posts: 211

Jul 17 12 4:20 AM

Hi Kara,

Thank you for all your wonderful information. I do have a question for you, if you take the apple cider vinegar doesn't it render your ph to an acid state? I just happen to have the Braggs and will start taking it but was wondering about this question.

Hope you are having a wonderful time in Ireland.

All the Best,

Sheila

KCFlorida

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Posts: 141

Aug 22 12 2:56 AM

Sheila, I'm sorry I somehow missed this. I think I was still in Ireland at the time. My understanding is that apple cider vinegar is similar to other foods such as lemons, which although acidic, actually have an alkalizing affect on the body. There are some pretty good books and websites out there if you are trying to follow an alkaline diet.

Sally, 12 or 13 fillings - quite a high number. I would do considerable research on the process and a good dentist since you are very stable at the moment and want to keep it that way. A good dentist will probably not remove them all at once (nor drag the process out too long - so that you can do chelation). I will send you a message with my email and you can feel free to contact me if you decide to have the dental work done.

Hope all is well with everyone. Children are back to school so the hustle and bustle begins again!

feelinggood

[-]

Posts: 211

Aug 22 12 9:29 PM

Thank you for the information Kara and most important thank you for checking back with us, I always enjoy reading what you write. Sheila

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Anyone remember me? I haven't been on the forum in ages.

Anyone remember me? I haven't been on the forum in ages.