TOPIC:

frankie34 wrote:

Hi dimples. thank you for your information.The liquid extract, tastes lousy to me, others have voiced the same opinion. I think I am going to shift to the capsules and tea, after i finish with the liquid.Again thank you for your information. Keep us informed of your progress.I personally think based on the websites contributors, this is the way to go.I am on a quest to increase my platelets to normal. I haven't yet because I just started the liquid, but I sincerely believe I will beat this.Again thank you and god bless

Frankie, Dimples doesn't have ITP, she owns the online shop that sells the papaya extract and is just trying to get sales.

How much do you take of this extract?

How much do you use on a daily bases?

HI ANN THANK YOU FOR THE INFORMATION. HOW ARE YOUD DOING WITH YOUR ITP. TAKE CARE AND GOD BLESS

HI JOJOSTEEN . I TAKE TWO TABLESPOONS OF THE EXTRACT AT THE SUGGESTION OF ROB, WHO HAS BEEN USING IT FOR A WHILE WITH GOOD NUMBERS..................TAKE CARE AND GOD BLESS

i AM BASICALLY NEW TO THIS WEBSITE, SO FORGIVE ME, IF i MAKE ERRORS. BASICALLY TAKING 1 OUNCE, 2 TABLESPOONS = 1 OUNCE OF THE EXTRACT , THEORETICALLY I CAN GO THRU A 4 OUNCE BOTTLE WITHIN 4 DAYS. IT IS EXPENSIVE THIS WAY. I AM MODIFYING MY DOSAGE TO 1AND HALF TABLE SPOONS. I HAVE ORDERED THE TEA , 30 TEA BAGS, AND WILL TAKE THEM ALONG WITH THE EXTRACT. I AM EXPERIMENTING NOW. TAKE CARE AND GOD BLESS

Lady Elly: I still haven't gone : P ! I wish I were better about such things, but the switch from one dr to another has made it a little more time consuming.

I have, however, continued with the three papaya every day.

You guys are keeping me on my toes - I will make an appt this week!!!

HI WEBSITE, I AM GOING FOR MY BLOOD TEST TODAY, TUESDAY 5/29/12 , WISH ME LUCK , I WONT GET THE RESULTS BACK FOR A FEW DAYS. I WILL KEEP YOU ALL ADVISED.......THANK YOU ALL, AND GOD BLESS FRANKIE.HI WEBSITE I RECIEVE MY COUNT, I AM DIAPPOINTED, THEY ONLY WENT UP FROM 42K TO 44K. I ONLY BEEN TAKING THE PAPAYA EXTRACT FOR 11 DAYS. I WAS OFF MY SUPPLEMENTS OF D3, B12 , MULTI, FISH OIL AND CHLORELLA, I AM GOING TO START TAKING THEM, AGAIN. ADDITIONAL BLOOD WORK REVEALED LOW COPPER, IN THE BLOOD, WHICH COULD CAUSE, THE PROBLEM , I AM NOW TAKING COPPER SUPPLEMENTS, I WAS GIVEN A BONE MARROW TEST TODAY MAY 30 , WILL NOT KNOW THE RESULTS UNTIL JUNE 12. WELL WEBSITE JUST REMEMBER ME IN YOUR PRAYERS TO THE DIVINE PHYSICIAN. THANK YOU ALL FOR YOUR KNOWLEDGE AND CONCERN, AGAIN TAKE CARE AND GOD BLESS YOU ALL.FRANKIE

Frankie I hope your count is super!

I just ordered it and the pills for my son. How much should he take each day?

Kitte G:

Just wondering what platelet count is since you started taking 3 papaya pills a day and would plan to have platelets checked on May 10th. That is a month ago and haven't heard results.

Keep us informed. Thank you.

Still haven't gone..... But I'm still take three a day.

I will keep taking them until I go - just been busy!

Hi Frankie, Despite what appears to be a ruse by Dimples, have you had good luck with PaPaya extract to keep your platelets at an acceptable level? I am newly diagnosed ITP for just over 2 months and have not had a good run keeping mine up. Thanks so much, Rose

Hi Ann, thanks for the information about Dimples. I am wondering if you are having luck with Papaya in helping you to keep your platelets at an acceptable level? I am considering taking it and would love to hear from 'real' people about their experiences. I was diagnosed in late March of this year and am having a heck of a time keeping my platelets up. Thank you so much, Rose

i never wait so long to take my son's results i always got it by phone,

hi rose it is 6/12/12 I HAVE TAKEN THE EXTRACT NOW FOR 24 DAYS,SINC 5/20/ I AM SCHEDULED TODAY 6/12 FOR BLOOD WORK , I WILL LET YOOU KNOW HOW I MAKE OUT. TAKE CARE AND GOD BLESS

HI ROSE . I AM SCHEDULED FOR A BLOOD TEST TODAY 6/12 . I STARTED TAKING TWO TABLESPOONS BECAUSE ROB HAD SUCCESS WITH THE DOSAGE. I STARTED THE EXTRACT 5/20/12 IT HAS ONLY BEEN 24 DAYS COUNTING TODAY. I WILL CONTACT YOU WITH MY RESULTS. YOU TAKE CARE AND GOD BLESS. FRANKIE

hi Rose. I RECIEVED GOOD NEWS TODAY MY PLATELETS WENT UP 10000 IN A 24 DAY PERIOD THEY ARE AT 53000 i am using the papaya extract 2 tablespoons, and the papaya tea bag 1 tea bag daily along with copper tablets because i have low copper. Between you and I I think it is the papaya . Keep me informed how you are making out. If you need more info just send me a message.take care and god bless. frankie

Alright - I finally got my CBC done! And the results were: between 50k and 60k - which is a great jump and amazing numbers for me. I was totally excited......

But wait a minute, there's more.

The new place I'm getting my CBC is a lab where they send me results and also send them to my doctor in Baltimore. So as I read further through the new report (which looks different than others and I had to figure out what info was where), the results for platelets said "50-60 thousand, inconclusive. Patient has significant clumping of platelets which may affect numbers".

Wait, what? Clumping of platelets? I've never read that before.

So I went online, and the first (and second, and third) thing I pulled up were pages from medical journals talking about this acid that lines some of the tubes they collect blood in, called EDTA. For approximately 1 in 3000 people, this EDTA can cause platelets to clump onto it, Which means that when they pull the blood for the slide, there are far less platelets showing, because they are all stuck on the EDTA in the tube. And this can sometimes lead to a diagnosis of "EDTA-induced pseudo-thrombocytopenia".

EDTA-induced pseudo-thrombocytopenia. Meaning the patient (in this case me) may NOT EVEN HAVE ITP.

Obviously, my next call was to my new doctor at Johns Hopkins.

Thankfully, he had already read the results and thought the same thing - that it is actually possible that I may not have ITP at all, and that it may actually be an error because of the EDTA.

My doctor asked that my next step (after a 10 day work trip) is to get re-tested, with two tubes - one lined with the EDTA, one without. Apparently there are differences in the tubes depending on the color of the cap ( I will make sure to find out this detail before I go back). And if each of the results are dramatically different numbers from the same pull, then we may have our answer - that I never had ITP in the first place.

This is all just speculation right now, but as you can imagine, this whole turn of events has me pretty emotionally exhausted. I mean, yes, this would be good news - great, really. But my god, I have a lot of other thoughts going on in my head.

1. I'm angry that this was never brought up or looked at until now.

2. I'm thankful that I was so adamant about not having a splenectomy, but

3. My god I took a lot of unnecessary drugs last year, including rituxan and winrho, not to mention three hostpitalizations for Ivig. That makes me sad and angry. My body is still recovering from the steroids, and I'm still losing hair.

4. I'm proud of myself for becoming my own advocate over the last 18 months, and becoming able to tell a doctor "no". Especially if it ends up I didn't have anding wrong with me.

5. I keep inking about the money spent last year on my health, not to mention the time lost from work and emotional costs.

But the biggest thing ging through my head is this:

If only one in 30,000 people have ITP, but 1 in 3000 have this reaction to the EDTA, why isn't it a standard protocol to rule out EDTA sensitivity before giving a diagnosis of ITP?

Because of this huge question I pose, I will be re-posting this as a new subject as well, because I want to see if anyone else has ever heard of this EDTA reaction.

So - for now, I go to work for 10 days. Then on the 29th, the new test. I will keep you all posted, and I'll check in during my trip.

Thanks to all of you who've been following my journey - its awesome having you all out there, and it makes the whole process so much easier knowing I've got a group of folks who listen.

Boy, I sure hope that you didn't have all that treatment for nothing. That would make me really angry. Did you have any other symptoms of ITP? In my case I've been low enough and had the bruising, petichiae etc that make me quite confident that ITP is an issue, but lots of people don't have those symptoms. This is definitely something we should be aware of. Thanks for pointing it out and keep us updated.

Lily

Hi,
can you tell me what brand of liquid extract you are using? Thank you very much

I have been going through this myself as of late. I have been telling my family doctor for the last 4 - 5 years that I think I have been bruising more easily and getting nosebleeds more frequently. I don't have any other symptoms other than bruises after I hit myself and nosebleeds.

This May I ended up having to go to the hospital for a nosebleed, they packed it and sent me home, this happened 3 more times over the next week and a half. During this I had blood work done and was told everything was normal. The next visit they told me that they didn't get a platelet count because of clumping so they were going to use different tubes, well that didn't work because my blood clumped in those too. What they did is refer me to a Hematologist which did more blood work, a bone marrow biopsy and a coagulation study. Everything came back fine other than platelet clumping, finally they decided to do a manual which came back at 30,0000. The hematologist said everything is fine and thought the count was probably just an error which my family doctor agrees with. Today I got the results from another CBC and manual count, platelets clumped and the manual 30,000. Since I only have the odd bruise and a problem with nosebleeds nobody seems concerned. The frustrating part is I had my family doctor look back at my results from my annual physical and surprise everything has been normal other than no platelet count due to clumping. As of today I've had no reaction other than being referred to an ENT for my nose. It's all been very frustrating to say the least.

So Kittie G I know what you are going through, I guess this platelet clumping due to EDTA happens quite often. They will probably redo your test using Citrate and Heprin tubes but that doesn't always work either.

I hope your next test is completely normal.

Kindest regards,
Bat

hi kittieg.................thank you for your information, you definitely did your research. Your research is very informative.Thank you for sharing .Hope you don't have itp. thank you and god bless Frankie34

Hello I have been trying out the papaya leaf extract for the past week now and im not sure if its working or if it was a total fluke!! I was diagnosed with ITP in feb and since then my counts have been falling steadily. I am currently on Prednisolone but as it didnt seem to be helping me very much my haemotologist was gong to start me on Cellcept on Monday. However i started on 2 Tablespoons of papaya leaf extract on the saturday before and when i went in for my weekly bloods on monday my count had jumped form 40 to 121 which is the highest it was been since diagnosis. Now im not sure if it was simply the shock of having somehting new to fight with or if it has actually worked but i had to let someone know!!!Im scared to hope that something is working but another part of me wants to shout out yipeee..im going to try and be quietly optimistic and see what happens when i have my bloods done again in two weeks time. Thanks for taking the time to read this.
N

What brand of papaya extract are you using?

im using rochdale

or is it rochway someting like that.

I am using iowa select herbs extract, from marion iowa.

I read up on papaya also and also ordered the papaya leaf extract for my 22 year old son. He was taking one tablespoon a day and 3 of the papaya pills a day and also 1000mg of vit c. This was for week, then yesterday his platelets went down to 8 and he had to go to hospital this morning for the winrho infusion.

I told him to hold off on the stuff right now(very expensive and will have to see if the winrho works).

I am wondering if he should have taken 3 tablespoons a day

He was taking them all at once since he was afraid he would forget.

Just wondering and hoping the winrho works, if not, then will try harder on the papaya leaf stuff

Papaya leaf extract is an anti-fungal... Do you all take probiotics? You may have Candida overgrowth like I did. I am convinced that the candida yeast overgrowth caused my ITP (with a combo of a few other things).. Just a thought