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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23196

  • KittieG
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Thanks Ann - that's sooooo annoying that a really good test isn't available in the states. I don't know how that would be covered if I were to go to England. It's not like I could say it was an emergency and get in on England's awesome healthcare. And I can't imagine mine would cover over there. I do have friends in Brighton that I'd love to visit - I've only been to London once and it was years ago.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23198

  • Melinda
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The belief here is it is not a reliable test.

I know someone who flew there & had the test done - it showed her spleen was destroying her platelets. After coming back home she had a splenectomy - success was not long at all, her count hit the gutter again. Other places in the body take over the blood cleaning if spleen is gone.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23200

  • Ann
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We have this discussion every time it's mentioned.. but it doesn't purport to give a definite answer, it merely changes the chance of success from the general 60% to something else and helps with the decision especially when, as in my case, it comes back saying it's all going on in the liver (hepatic sequestration). I got this from my doctor before I had the test.

"The 4 patterns of platelet sequestration observed are: (1) pure splenic, (2) predominant splenic, (3) hepatic and (4) mixed. Patients in whom there is pure or predominant splenic uptake have a much higher response rate to splenectomy (90+%) than those with mixed (16%) or hepatic (<16%) destruction."

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23205

  • eklein
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Yes, what Ann said. The indium study will tell you if splenectomy will fail because the liver is the site of platelet destruction. That's all it will tell you.

If the platelets are destroyed primarily by the spleen, the indium study can't predict success or failure. For those for whom platelet destruction is primarily in the spleen there is a slightly higher chance of splenectomy success than for those for whom site of platelet destruction is unknown. Because the liver destruction people are in that second group.

If platelet destruction is in the spleen it could switch in the future to liver - so that is one big reason why the indium study can't predict success for the spleen destruction group.

Does that make sense? Are we in agreement?
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: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23210

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Yes. The Indium cannot predict success. It can predict failure. I'm not all that impressed with the verbiage in the studies which I believe is misleading.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23217

  • Ann
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I think saying it cannot predict success is too simple and incomplete. In ITP we do talk chances of success all the time as we say things like rituxan works for 50% of people and so on, so I don't understand why the percentage success rate is then ignored when it comes to this test. If you are told you have a 90% chance of success with splenectomy it could change your decision so it is worth knowing just as much as being told you've got less than 16% chance of success.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23219

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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It is simple, granted. But if the Indium shows that 90% of the destruction is in the spleen, I don't think that guarantees a 90% success rate. Again, how long of a remission is considered successful? If destruction begins to occur in the liver after two years, is that a success? I guess it's all in what is acceptable to the patient.

I don't think of Rituxan like that either....that it works for 50% of the individuals who try it. I think of it more like each person has a 50% chance that it will work for them. It either will or it won't. Maybe my perception of percentages is skewed, but that is the wacky world of ITP.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23220

  • Ann
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They never say that 90% destruction is in the spleen. They don't use percentages in that way. They either say that destruction is purely splenic, mostly splenic, mixed or hepatic.

If rituxan works for 50% of people then it does mean that you have a 50% chance of it working. We *have* to listen to these percentages. As I said on another thread a wee while ago, we live by them. We know that a very small percentage of people have brain bleeds. If we didn't take that statistic on board we would be nervous wrecks.

For me, I did the indium test out of interest. I do a lot of things out of interest. I recently took part in a study about food intolerances and ITP purely out of interest. I proved not to have any intolerances, foodwise I hasten to add. I have plenty of intolerances in other areas.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23221

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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You'd know more about Indium percentages than me. The only thing I come up with is that it's a good thing for ruling out a splenectomy, as in your case. For me, it is that simple.

I think this is the first time that you and I didn't see things the same. We usually do.

As for intolerances - I enjoyed that quip!

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23225

  • KittieG
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wow - very interesting. This does make the splenectomy question change though. I wish this test were available in the states. I may ask my dr anyway - ya never know. I would say that if it were anything other than "exclusively spleen", I would not be interested in the slpenectomy, as a 2-10 year success rate is not a success to me.

Of course, if I'm still talking about 10k a few years from now, I may be singing a different tune.

thank you for the discussion.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23369

  • begis7
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Hello,

I just wanted to share with all of you that my 13th yrs old daughter Maria del Mar had her doctor´s appointment last wednesday...her platelets were at a normal level, 179000/µl, after one month and a half with no medication...only taking OMNIPLUS...thanks God!! Next check up in two months...I´ll keep you posted.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23374

  • krsnanandini
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That is fantastic news. Unfortunately I am unable to source this product in australia so I have ordered the Ayurvedic herbs mentioned in the complimentary therapy section of this website. They are called Maharishi amrit kalash and maharishi amrit nectar. They should arrive in a couple of weeks. Fingers crossed for fab results :) Still taking the other things too ;o)

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23375

  • krsnanandini
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That is fantastic news. Unfortunately I am unable to source this product in australia so I have ordered the Ayurvedic herbs mentioned in the complimentary therapy section of this website. They are called Maharishi amrit kalash and maharishi amrit nectar. They should arrive in a couple of weeks. Fingers crossed for fab results :) Still taking the other things too ;o)
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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23376

  • Ann
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krs, how are your counts? I know it hasn't been long as yet but here's hoping they are staying up.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 10 months ago #23383

  • begis7
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Thanks Krsnanandini...I also hope the natural products that you ordered will help you recover...though keep in mind it´s better to try one thing at a time so you know which are it´s benefits and effects that we all hope are the best!! Good luck!

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23402

  • thuathien
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Hi begis7,
I am trying OML+ about 5 days. I don't have a membership, so I paid a little more to get it. It is about one month I did not use any Prednisone. I feel better when I use OML+. Let see what's happens in my next blood draw next week.
Your daughter count (179K) is still good, but it has a downgrade from the last time (273K), and the previous time (278K). Is it right? Did she take OML+ in schedule times?
Thank you Begis7 for your suggestion to use this medicine.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23403

  • Melinda
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Beatriz I was delighted to see your daughter is doing well and her count is great!

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23404

  • begis7
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Hi thua,

Maria has been taking Omniplus everyday (mostly at nigth) since her last low platelet count (17000) early in January, when also her doctor prescribed her 50 mg Prednisone/day for 2 weeks. Since her platelets went up to the levels you mentioned, she began reducing the medicine intake.
I actually asked the hematologist if there was a trend that may indicate her platelet levels are going down. She said that Maria´s platelets are at a normal level. People just have different platelet levels. She also mentioned that a reading may vary substantially in a day at the same person, also depending on the lab that makes the results reading. Maria does not have any symptoms that may indicate otherwise…she feels really good…she does not have petechiae…actually we looked at her old blood tests before she had ITP, and the readings vary a lot within the normal range.

I am so happy to hear you are trying Omniplus...actually we are experiencing almost parallel processes...I can´t wait to hear how about your next blood tests results...good luck!!!!!

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23405

  • begis7
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Thanks Melinda..We are so happy & thankful to God :P !!!!!
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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23423

  • krsnanandini
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Just got my latest counts from yesterday. They are at 208,000. A wee bit of a drop from the other day 268 but still great in my opinion. I am currently on 40mg of prednisone and dropping to 30 tomorrow. Lets see if they hold :)

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23424

  • begis7
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krsnanandini

That´s a good platelets level...hopefully it keeps stable...when is your next blood test?

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23425

  • krsnanandini
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seeing the hemo on friday so will know my when my next test is then :)

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23470

  • KittieG
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Lady Elly:

FYI - I've been taking the papaya leaf for about 10 days now at three pills a day. I will continue until my next read and let you know the results.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23472

  • begis7
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ok. I will be waiting to know when is your next blood test. Good luck!!!
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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23594

  • krsnanandini
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Hemo was great, he said anything over 30,000 he would be happy with. I am now going to monthly blood tests, next one around the 26th of April 2012. Waiting for my Ayurvedic medicines to arrive and will see how things go when I am off the prednisone (about 2 mths) and just taking natural therapies :)

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23599

  • begis7
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So. Do you mean your platelets´ level went down from 208,000?? Maria´s doctor told us that she only would prescribe prednisone to her again if platelets go below 17000 considering she is a girl....

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23601

  • krsnanandini
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No, my levels were still 208,000 from the last test. My next test is on the 26th of April.
I would wonder why she would need to be on the prednisone if platelets are at 170,000 as that is within the normal range. I would have thought they would only prescribe the meds if you were outside the 'normal'range. Food for thought...

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23609

  • begis7
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ok. I am glad your blood test is stable at a normal range...I said 17000 (17k), which is low, but it was interesting for me to know as you said that the doctor won´t put her on medication if the reading was about 20000-30000, but because of the period & the 17000 reading she was put on Prednisone last January...

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23641

  • thuathien
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Hi Begis,
I just got the blood draw result yesterday. It is 21K. It goes down from 45K to 21K in about a month in which I used OMNILIFE PLUS for 2 weeks. I stop using it. I think this medicine is used to boot immunse system, but in the meantime we need some kind of medicine to weak our immune system such as prednisone ... so the antibodies cannot develope more to kill plalets. How do you think? I am using YARROW which is another kind of medicine you recommended. I am also using Prenisone 60mg per my doctor advised when the result came out yesterday. Maybe each body is different.
Thank you.

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Re: RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY 9 years 9 months ago #23644

  • begis7
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Hi Thua,

So, during this month before your blood test, you only took Omniplus?...My daughter was taking both....Prednisone & Omniplus the first two weeks since her low 17k...then began reducing gradually the prednisone until she was off medication and only taking Omniplus...It has worked for her since her last reading was 179k after about 45 days off Prednisone. It seems interesting you are trying yarrow, which Dr. Rosas Dr. Yunes & Dr. González had seen to have a positive effect for the ITP...we have not tried it because they don´t sell it here...since when are you using it?...How long will you be taking Prednisone?...please keep me updated....best wishes!

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