RESEARCH BASED NATURAL PRODUCTS..A SUCCESFUL STORY

Kittie
Do you really can even think I am selling a product here...come on...I do get it for my daughter...why it is so unbelievable that latin doctors had come out with a natural product that is so good that you can´t accept it. I just share my experience with the world and you guys that do not have this resources that otherwise you may not even get to know about...I do let people know the web page & I do not care where or who they buy it from...though if someone lives in a country they don´t sell it I will be willing to help them get it...don´t be selfish. I am a PhD scientist & I do not need to make few bucks out of this. Sorry!!!

Kittie
Here it is all about people being healthy & share our experiences with ITP...that´s all I care about not $$$$$$$$$$$$$$$$$$. If you have good information to share that may help people to get over it...please do so!!!!!!!!!!!

It was merely a question - and a fair question at that.

I wish I had information to share to help people "get over" ITP, believe me.

Skepticism isn't selfish - its human.

Ok, so last tuesday my platelets were at 9000, just one week later they are at 268,000. I have been taking the prednisone 100mg per day. I have also been dosing myself up on alternative therapies, Colloidal silver, swedish bitters, executive B stress multi vit, vitC, vitD,and calcium along with massaging castor oul into my spleen area. I have also been drinking herbal teas such as peppermint, chamomile and dandelion. I have yarrow on order but perhaps won't need it.

I am tapering off the prednisone from tomorrow and will see if my levels drop or wether they are stabilised. I am very encouraged at the speed my platelets have increased and will let you know if they stay the same once I am off the prednisone...

Krsna: good luck to you and thank god you are able to begin a taper from 100 mg. that's intense for sure - I've only done up to 60mg a day and I thought I was going crazy on that!!!

I'm sure you have, but please keep your hematologist in the loop with all those supplements you're taking. That's quite a list, and he/she will need to know in case of any interactions. Sometimes even natural stuff can cause reactions/interactions. But I don't blame you for trying - I just got more papaya leaf today and I don't think it's doing a darn thing.

Thank you for your reply Beatriz. I think I would stay away from this because of the echinacea.


krsnanandini may I ask why you are taking colloidal silver?
www.mayoclinic.com/health/colloidal-silver/AN01682

There's a youtube video of a guy who took silver long term and his skin is blue and it's a permanent change so no going back. Others seem to go a more grey colour with a blue tinge.

This is the video of the man

www.youtube.com/watch?v=ahihGKZC5Kk

i know that silver had been used for thousands of years before there was an american medical association. i would not use it myself, although, hypothetically, if a doctor said you need to take either collidal silver or an injection of nplate that manipulates the biological activity of your bone marrow, i would try the silver.
even though i say i wouldnt take it, for now, i wonder why people , news media or otherwise, get all nervous about it, when in the last 3 years, 250,000 people have died from taking pradaxa, just one of the thousands of drugs that have killed people, and they dont complain much.

I didn't see the media getting all nervous about it - do you have any references for that frec?

I think you would look nice as a Smurf.

freckles wrote: i know that silver had been used for thousands of years before there was an american medical association. i would not use it myself, although, hypothetically, if a doctor said you need to take either collidal silver or an injection of nplate that manipulates the biological activity of your bone marrow, i would try the silver.

If a doctor told me I needed to take silver I'd find another doctor!

WOW, HUGE negative feedback about the colloidal silver that I am taking.

Thank you freckles for your open view, in my opinion we all have the right to try any and all availiable natural therapies that feel right for you.

My original experiences with the colloidal silver 2-3 years of on/off use have been that whenever I had lesions/sores in my mouth (a symptom for me of having spleen problems) I would spray with the silver and within the day the lesions would go away. I feel the colloidal silver is working for me due to the positive reactions my body has had over the years and also now that I am taking and will continue to take 1tblsp 3x a day.

I believe that I would have to take heaps of colloidal to turn blue (if this is even the real cause of the blueing) and I am willing to take the risk.

Is the real problem here that I am being so pro active in my approach to the ITP that certain scaremongers are feeling that they have to try to knock me off my perch to make themselves feel better, I note that these people have not even attempted to try the product (as far as I am aware) but still feel qualified to tell me it is not ok to take via the links and videos.

My view is each to their own, BTW I won't give any more replies to this as it is quite tiresome. My energy is better directed at MY WELLNESS rather than trying to justify MY CHOICES for MY HEALING options to people who in MY OPINION have opinions that I don't care about. Oh and I never bothered to look at any of your links or videos bahahaha.

The difference is:

Both Silver and N-Plate can cause side effects, but N-Plate is proven to work for ITP whereas Silver is not. You could be taking it for nothing. Although the same is true for N-Plate, the odds of it working are much better.

This discussion is bordering on possibly getting out of hand. Most are maintaining politeness, but I see the line being crossed just a bit.

KRSN - I know you believe in the collodial silver, but I also hope you are doing your research to be sure it's safe. I know I would be appreciative of someone pointing out possible dangers. How do you know it didn't trigger ITP in the first place?

Krsnanandini,

As you said your platelets went up soon...follow your heart & keep up with your alternative therapies once you stop taking Prednisone...but as KittieG said let your hematologist know about it just to make sure everything is fine. I sure will be happy to know if your platelets stayed up!!

Good luck!!

I could not help myself... www.purestcolloids.com/blue-man.php

hehehe, in a better frame of mind than I was this morning

That's right. I said in my original post that he took silver which he did. Similarly I almost also pointed out that castor oil contains ricin but didn't think it would be appreciated! Older Brits may remember the umbrella murder of 1978. :ohmy:

Nothing negative in asking why taking collodial silver & posting a Mayo Clinic site, which I would assume sort of knows what they are talking about [I find it interesting you wouldn't even read it - someone gives me a site and I will at least read it]

Ann mentions a video about a man - I found it an posted it. Nothing wrong with that, I would assume anyway. hehehe

Collodial silver can cause what the man has in the article you posted [I did read what YOU posted] - argyria (ahr-JIR-e-uh).

From the Mayo Clinic site you wouldn't read:
It's not clear how much colloidal silver may be harmful, but it can build up in your body's tissues over months or years. Most commonly, this results in argyria (ahr-JIR-e-uh), a blue-gray discoloration of your skin, eyes, internal organs, nails and gums. While argyria doesn't pose a serious health problem, it can be a cosmetic concern because it doesn't go away when you stop taking silver products.

My question still stands - why are you taking colloidal silver? In other words: have you read that it can help with ITP, has a doctor or homeopath or whomever, told you that it will help with ITP? [was just a normal, curious, innocent question - I am sorry you took offense]

KittieG:
How are you platelets doing with the papaya leaf juice? I have been taking it for the past 4 months. My platelets for the past 4 months are around 7 to 10. A couple of times they were at 20, but mostly around 10.

Lady elly:

I was not dedicated to really testing it, and I wasn't being strategic or consistent, so I can't give it a fair report yet. Numbers today were 11k - a new low for me, huzzah!

How are you managing the 7-10k? Just curious. Do you have any visible signs?

Todays read was two weeks after the dexamethasone brought me up to 91k. At THAT appt, my dr was willing to go two weeks before our next read, but thanks to all the methodical and detailed posts on this site, I noticed that lots of people have a swing up, and then a week later, back down from the dex. So I scheduled a read for a week later (between me and my hematologist, im glad one of us knows what's going on). Today when I had the 11k, he asked me "so, why did you come in so much sooner? I'm glad you did". But like is always the case for me, no visible bleed at all - no petechia, no purpura, no mouth sores, no nosebleed. In fact I have been feeling really good. The answer is I came in because of my friends on the PSDA site!

So I'm back on a 4 day 20 mg dex pulse to boost them back up (I tolerated the dex really well, and it's only 4 days, so eh - why not? And it's $3! You can't beat that), and I am thinking that after I finish, or maybe on the last day, I'm going to begin 3 papaya pills each day. This is the recommended dose. I got the liquid originally but it tastes horrible, so I was not very dedicated to it. The pills are easy, so I will try it out and be more dedicated to the process, and report back. I keep a med/food journal, so I will track it carefully.

This visit to the hema was much better - I made him review each treatment weve tried over the last year, and how much it boosed and for what duration, and if that changed each time. I think that I'm going to try Winrho again, mostly because the first go gave me 181k and stayed in a safe range for 2 months. I'm at a point now where 2 months would be awesome, and I tolerated Winrho really well, and is fast. Oh - and cheap, which shouldn't matter, but ya know what? It does. I can only get insurance to cover ivig if I'm admitted to the hospital. If I'm in a chemo clinic or something like that, they cover 75%, but it's thousands and thousands of dollars, so 25% of that was $2300 one time. A very annoying lesson to learn.

Does anyone know what is the name of the iridium test that tracks the path of destruction? Anyone know? I may be more interested in a splenectomy if I knew they were mostly being destroyed there. I've heard it's more standard in England - of course.

Let me know if you know!

It's the indium platelet survival study. I doubt you'd get it in the US. Come to England for a holiday and have it done here.

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.

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.

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."

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

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.

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.

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.

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.

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!

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.