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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20655

  • Lady Elly
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Melinda,

Thanks for suggenting keeping track of platelet count which I feel is very important.

I've kept track of platelet count and medications on since diagnosed with I.T.P. (May 25, 2010). I keep everything on a spreadsheet so it's easy to see what has occurred.

Had platelets checked on 12/28/11 and they were went up 5,000 in 6 days. But still very low.

Hopefully, something will start working as I do not want to have to live on IVIG.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20657

  • Lady Elly
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Erica,
Last June & July 2010, I had 4 times Rituxan, once per week. Each time my platelets dropped after taking it. I was on Predisone at the time.
I'm wondering if it would work if I tried it again.
I have a lot of digestive and stomach problems. The doctor thinks I may have food intolerance, but I don't know which foods are causing a problem.
What all did you eliminate from your diet? How did you discover which foods to eliminate?

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20686

  • eklein
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I knew I was having severe digestive problems after having fruit juice especially apple. I wasn't sure what other foods were messing me up. I did some online searching and came up with 'fructose malabsorption' - it seemed to describe my problem very well and I could see that many of the foods listed were my problem foods. I saw a gastro doctor and had a colonoscopy to rule out other problems and a breath test to confirm the fructose malapsorption. I changed my diet and found for the first time in years I had normal digestion. One of the foods I had to give up was onions and I think it was a big part of my problem, and I love onions. Anyway, I think the constant inflammation in my intestines was aggravating my immune system and when that went away it seems my other immune disorders mostly went away too. As I said I can't be sure, I know the Rituxan made a huge difference but I believe that the change in diet and gut health is also probably contributing a lot.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: Lady Elly

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20706

  • tgurin12
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For those who have had luck with the extract, how long did you take it before seeing results?

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20708

  • robfoss
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I started the extract back in january my levels had been as low as 10-12
now as of last Tuesday they were 133.The highest so far.I take 2 tablespoons everyday!
The following user(s) said Thank You: Lady Elly

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20731

  • poseymint
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to tgurin- I just read reviews on Amazon and some people say they have results within 5 days or first week. I ordered one month supply to give it a try. will let you know!

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20785

  • Lady Elly
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Erica,
What are the main foods that caused you to have fructose malabsorption besides suger & onions?
I feel this is a problem and plan to ask doctor if they will test for this.
Thanks.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 11 months ago #20798

  • eklein
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The main foods that are problematic in fructose malabsorption are foods that are high in fructose: apples, pears, honey and high fructose corn syrup (which is in SO MANY American foods) are the highest.
Also foods that are high in fructans which are converted to fructose in the intestine: onions, whole wheat, brown rice, chicory and inulin (a type of fiber added to a lot of foods).
People with FM (fructose malabsorption) also tend to do badly with pro-biotics.
The Wikipedia article gives a pretty decent overview:
en.wikipedia.org/wiki/Fructose_malabsorption
The main researcher is Sue Shepherd out of Australia, she has some excellent, peer-reviewed research articles published in medical and nutrition journals. Here is a link to one good article:
sacfs.asn.au/download/SueShepherd_sarticle.pdf

Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: Lady Elly

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21212

  • Lady Elly
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robfoss:

You said that you started on the Papaya leaf Extract January 2010.

How often did you have your platelets checked after starting on the Papaya Leaf Extract?

How many points did they go up in the beginning -each week, bi-weekly, or month?

Was it a slow process getting platelets up?

I am very interested in your platelet count.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21213

  • Lady Elly
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Erica:
Thank you for your information on fruclose malabsorption and the articles. It is very interesting. Did the gastro doctor do the breath test?

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21219

  • eklein
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Yes I had the breath test and it was positive.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21446

  • ashna1
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Hi

I had just ordered the Papaya extract drops? I know there are no specific directions, but does anyone know how many drops you should put in water and how often?
Also, I noticed that Papaya extract is very high in Vit E? Correct me if I am wrong but isn't that something ITP'ers should stay away from?

Thanks!

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21466

  • monica81265m341646577
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how long were you taking the extract before you saw them raise from 76 to 114?

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21468

  • robfoss
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One Week my levels started to rise.I take it daily.My last platelet level in Dec. was 133.Look back at my past Blogs and I explain what I have been doing where to buy how much etc.
Goodluck to you!

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21469

  • monica81265m341646577
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thank you much for responding so quickly - i am new to the site - how do i find your past blogs

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21473

  • Lady Elly
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Robfoss:

Did your platelets ever drop any after taking the papaya leaf extract and than go back up? My platelets dropped and than the past 4 weeks went up each week as I continued to take the extract.

Also, is the papaya leaf extract alway clear or is it sometimes cloudy? I have a bottle that is clear and another botter that is cloudy. I read when it gets cloudy that it is older and non effective on platelets.

Thanks.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21501

  • robfoss
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No my levels never went back down.Sometimes they did not go up but a few points but never have decreased. My labs in DEC were 133.THe extract sometimes is not clear i just make sure I shake up the bottle.It taste quite bitter.
The following user(s) said Thank You: Lady Elly

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21502

  • robfoss
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Just go to the bottom of this page.Then click on page one look foe my entries robfoss then go to page 2,3,4, etc.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21503

  • robfoss
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I take 2 tablespoons daily.I do not put in water but it should not hurt if you do.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21508

  • Lady Elly
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Robfoss:

Do you refrigerate the papaya leaf extract?

Thank you.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21512

  • robfoss
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No but it will not hurt if you do!
The following user(s) said Thank You: Lady Elly

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21541

  • poseymint
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Lady Elly, I am wondering what your counts have been, if you don't mind sharing the numbers. Good for you that they are going up with the papaya extract! Do you use the Iowa brand that has alcohol in it? It tastes like whiskey to me. how much do you take? pills or liquid? hah I have lots of questions- interesting subject!

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21548

  • tgurin12
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You are only kidding about the alcohol right, posey? It says it is pure. I agree it doesn't taste the best. I gave up on it, but my platelets have gone down, so I think I'm going to try it again.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 10 months ago #21554

  • poseymint
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hah TG- No not kidding about it tasting like whiskey. I'm talking about Iowa Select Herbs Papaya Leaf Extract. Its 25% "spirits" meaning grain alcohol. The other kind sold on Amazon- Herbal Papaya, is water based. I've tried the capsules but not long enough to see any results. Let us know, and good luck!

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 9 months ago #22092

  • Lady Elly
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Poseymint:
My platelets were 7 and started gradually going up when taking the papaya leaf extract. Over approx. 4 week they went up to 22. Everything seemed great. The following week, they dropped to 7.
They have been between 7 and 11 for the few weeks. I am still taking the papaya leaf extract, but at the moment, it doesn't seem to be raising platelets. I noticed I am not brusing as I previously did.
I use the Iowa brand liquid and it does taste bitter. I take 2 TBLS in morning. I have not tried the pills.
Has it helped your platelet count?

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 8 months ago #22906

  • seema09
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I love this Site.
I read all the 9 pages of this post and thought I should also write something on My "papaya leaf story"

I am also taking this (along with Rituximab) and my count last week was 30,000.
Dont know whom to give the credit to, but yes i would definitely contunue taking the papaya leaf juice.
I also take "wheat grass juice" and "celery juice"

Lets see what works......

Love you all and god bless us ALL

Seema Mathew

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 8 months ago #23577

  • MDgal
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Any more Papaya success stories? I noticed the websites now have an alcohol free extract.
"With man this is impossible, but not with God; all things are possible with God." - Matthew 19:26

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 7 months ago #23692

  • hottoddy
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It didn't work for me. I picked up a popular extract from Amazon. For 4 weeks I took two eye droppers full, one in the morning and one at night. Yesterday my platelets came back at 49K - down 4K from my January labs. I have been holding pretty close to the 50K line for some time. If I saw any uptick, I'd still be interested in Papaya Leaf Extract - but it appears to be a dud for me. Perhaps I will try again at a higher dose for longer time before my next labs (August 2012).

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 7 months ago #23693

  • Lady Elly
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Hottoddy,

I stopped taking the papaya leaf extract for about 5 days. My platelets were between 10 & 11 for past month. So I did not believe it was helping my platelet count.

I had my platelets checked and they were 11 last week. After 5 days rechecked and they dropped to 6. I did start back on it as it might be helping a little and I hadn't been bruising like previously with 6.

Looks like it has helped one person with I.T.P. on this site.

We will see as I plan to take it again for another month.

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Re: PaPaya LEAF EXTRACT as a Treatment for ITP! 11 years 7 months ago #23705

  • KittieG
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I've been taking the pill version for a couple of weeks now - three a day. I get numbers done on Monday so we will see.

Last count was two weeks ago, 32k. I haven't been on any steroid for about 20 days, and I swear my body is so happy.

I'm going to a new guy on Monday - at johns Hopkins. I'm interested in what he has to say. I've still had pretty much no visible signs of anything - any bruise is accounted for, and they take a while to go away but it's not like I'm totally bruised u
. No real petichae, no purpura at all, no Blood blisters in the mouth..... I still have a feeling they are low, as that tends to be my pattern.

I would love the papaya to work. We will see - I will report back soon!

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