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Hi, I have recently started my son on colostrum, papaya leaf extract, and soon the herb tawa tawa. Has anyone had any good experience with any of these products?
I have been doing research for about 2 yrs to try to help my son, whos 11. He used to get IVIG all the time, & then one day 2 yrs ago his ITP vanished for 9 months. It has been back now for 8 months. We have a new doctor, IVIG no longer working, they just gave him Winro for 1st time last week, which the whole idea behind that drug is ridiculous, so Im not letting him on it again. I really have almost no faith in the standard medical community, it enrages me that they cant figure this out. Im about to quit my job & become a medical researcher full time to try to figure this out. If anyone has any advice that can help please let me know. Next week I'm going from NY to Boston just for a 2nd opinion. Thanks.

Here is an entire discussion on papaya leaf.

pdsa.org/forum-sp-534/8-natural-treatment-methods/16460-papaya-leaf-extract-as-a-treatment-for-itp.html

There has been and continues to be a LOT of medical research going on for ITP. It has come a long way in the past 15 years. Below is a summary of ITP and it is fairly evident why they can't just 'figure this out':

We now understand that much of the pathogenesis of ITP is caused by antibodies against platelet glycoproteins, most commonly platelet glycoprotein IIb/IIIa, the platelet fibrinogen receptor. Most patients, especially those with chronic ITP, also have antibodies against other platelet glycoproteins, including glycoprotein Ib/IX (the receptor for von Willebrand factor), and glycoprotein Ia/IIa, a collagen receptor. It is commonly believed that ITP may begin with antibodies against a single glycoprotein, which leads to accelerated clearance of antibody-coated platelets in the spleen. Degradation of cleared platelets by splenic macrophages leads to the release and subsequent presentation of antigenic peptides from proteolyzed platelet components, including glycoproteins, on the macrophage or dendritic cell. This may lead to recruitment and activation of specific T cells that in turn interact with and stimulate B cells to produce new antibodies against the platelet-derived peptides. This phenomenon, known as epitope spreading, may be responsible for the fact that most patients with long-standing, chronic ITP develop autoantibodies against multiple platelet glycoprotein targets.

Several agents used in the treatment of ITP may work by impairing clearance of antibody-coated platelets by the reticuloendothelial system. One of many potential mechanisms underlying the therapeutic efficacy of intravenous immunoglobulin (IVIG) may be its ability to interact with a specific type of Fc gamma receptor, Fc gamma RIIb. IVIG therapy stimulates increased expression of this receptor, which in turn may impair the function of other “activating” Fc gamma receptors responsible for platelet clearance.

ITP associated with infection may arise due to molecular mimicry. HCV, HIV, and H pylori contain amino acid sequences that may have structural similarity to regions within platelet glycoproteins. Thus, antibodies directed against the pathogen may cross-react with the glycoprotein, leading to thrombocytopenia.

Our understanding of the immunologic basis of ITP has greatly expanded over the last decade. Although it has long been known that B cells produce autoantibodies, T cells have more recently been shown to play a critical role in regulating B-cell-mediated autoantibody production in ITP. In some situations, T cells may directly lyse platelets, or suppress megakaryopoiesis. This may explain why some patients who do not respond to standard B-cell-targeted therapy may respond to cyclosporine or other T-cell-directed agents.

www.ccjm.org/content/78/6/358.full

Why do you feel that WinRho is ridiculous? Many here have had remissions for many months and some for years after WinRho. Did your son get any rise in platelets from it?

Thanks for your article, I will try to understand all that you wrote. I would think that this all boils down to a genetic malfunction, something in the gene expression must be wrong. Maybe with all the genetic work that is being done these days, they can soon apply it to fixing problems like this in the human body. He has been tested for viral & bacterial issues, he has none of that, the answer to this autoimmune problem, like what your article sounds like, must be on a deep cellular level, I just hope the researchers can crack this. Thanks again.

The reason I said that about winro is the idea behind it. The idea is too destroy, or attack red blood cells to act as a decoy so the platelets are left alone, so its like causing a new problem to fix an old one. I really am not for drugs, or for treating the "symptoms", as I am for searching for the root cause of the condition. Powerful drugs like winro that cause red blood cell problems to me is crazy, although I understand that sometimes we have no choice but to use it, and in some cases like you mentioned, corrects the platelet problem for months.
I will say that it has not yet (been 6 days) raised his platelet level at all. The doctor is disappointed as he thought it would do more, his numbers went from 4k to only 7k. I brought him already within the 6 days to the ER one night because he had a bad dizziness issue & I was afraid his RBC count was low. Thank God his RBC was ok, it was actually 11.6 which was higher than they thought it would be. So, so far, for my son, the winro did not do much, except scare me & make me worry about some powerful drug that the put into him that has a list of side effects, for only a platelet increase of 3k. Again, its great news to hear that it has helped others more so. I will keep things updated, he's getting a blood test Monday I'll see what his numbers are then, but he's been having nose bleeds today.so.... Ok, nice to speak with you.

Right - you got it. The body is a very complex thing. Autoimmune disorders can cause all sorts of damage to tissues and cells. It's not an easy thing to just fix it.

Win-Rho does not work for everyone. He would have seen an increase by now if he were going to. It never worked for me either, but has done wonders for others. None of the treatments are perfect solutions, but they can get a person out of the danger zone.

Watching and waiting is a valid option for children if his symptoms are not bad. How old is he?

Some people have had luck going gluten free. That is just one possibility to try if you're up to it.

Hi Sandi...he's 11. I would do the waiting thing if his numbers were 20k or higher, but this morning he woke up & his mouth has a bunch of those blood boils in it, & yesterday his nose was bleeding in school a few times, so today we are going to take him to the hematologist for a count & i'm going to ask them to start Rituximab, as much as those drugs scare me. Next week i'm taking him to the Boston pediatric center to talk with them, then the week after i'm taking him to James Buscell in NYC for more advice. Thanks again for writing back, hope all is well with you.

I went to the PDSA conference. James Buscell was amazing. He is an expert in this field. He will be able to give you some great advice and help you.

thanks very much, I have a appointment with him Feb 7th. My son actually saw him once before, but we stopped because after a heavy anti-biotic treatment that we gave him for H.Pylori, his ITP went away for about 9 months, but now back again, so we are going back.

new news this morning, winrho working, at least a bit, his plates went from 7k last week to 16k now. His RBC did drop from 11.6 to 10.2 which was expected. They are going to put him back on a drug called something like "siramirus", I dnt have spelling with me right now, but its a immune suppressant that only affects the B cells I think it is that attack his plates. He was taking 9 a day few months ago so now he will be on 4 a day. I also started him on papaya leaf extract which helps plates & also another herb which is supposed to help with plates, its called "Tawa-Tawa", its from the Phillapines, they use it there for Dengue fever, because dengue also lowers plates a lot. We are still waiting for the tawa tawa in the mail.

I don't know which med that could be. CellCept?

It would be a good idea to make sure that those supplements will not interfere with his medications. We've had people here who have used supplements only to find out that they did cause problems with meds or ITP itself. They are not harmless. Some supplements can interfere with platelet function and can make symptoms worse.

Also, I don't know if Win-Rho is working or if your son is just having a normal platelet fluctuation. A good response would be counts over 150k by day 7 - 9.

Let us know what the drug is when you find out.

Sirolimus otherwise known as Rapamycin, an immunosuppressant.

Maybe your son is recovering. Eighty percent of children recover with or without treatment. Be wary of treating unnecessarily.

Ann, you surprise me with your knowledge of such things. Even with google I couldn't find the right answer.

By the way, "siramirus" only gives two results on google. Never had that happen before!

I've never heard of that one. Too lazy to google!

hey sorry its been awhile. In regards to the siramirus, apparently what happened to my son can happen to anyone that's on a immunosuppressant drug, which makes sense, the immune system gets suppressed, & then becomes acceptable to different virus's & bacteria. I think because hes a kid, his body has not built up an immunity to the different bugs out there, so he must have came down with one that is not that common, but I researched it, & he had all the symptoms of something called the "BK virus", which produces blood in urine. Anyway, since then he has taken rituximab, & it did absolutely nothing at all. I'm still in shock about that, & very upset. He's now back on predisone 7 mg a day, last count was only 14k. This is crazy, I cant believe the medical field cannot figure this out. If anyone has any advice please let me know, thanks.

Ant:

There are many medical disorders that cannot be cured. ITP is just one of them; it's just not that simple. This may be helpful:

www.pdsa.org/about-itp/causes.html

thanks I will check out the link. In the meantime I am going to order a product I read about here on this site on a page I haven't seen before, it mentions other ways people have been trying, there is a Japanese herb called " kamikihito", I am going to try it. I also am going to add papaya leaf & shark liver oil, & whatever else I can find. Maybe a cocktail of things together will have a better effect, I have to try something for my son.

Good luck with your endeavours Ant. I know how frustrating it can be.

Just be wary of mixing too many new ingredients / herbs together. They can also be harmful if not used in the right way. How will you single out which one is effective?

Just be careful and research what you are using. Shark liver oil can increase antibody production and you definitely don't want to increase anti-platelet antibodies in the process of trying to raise his counts.

Supplements can be as dangerous as traditional treatments and come with adverse reactions and interactions.

Allopathic medicine only suppresses the immune system when what is needed is to immune modulate(balance). It is possible to modulate with the following: Beta Glucans, preferably from baker's yeast. You should search on "Carnivora" which is a great immune modulator. You should test him for food allergies, and for gut issues(permeability). Also test him for toxins, specially the damage done by vaccines. Immune modulation, gut healing, detox(vaccines), and possible vitamins and mineral deficiencies are the key. Try, you will be surprise. My daughter stared at 12, she is now 18. ITP and Possible lupus, her last count was 206k with no medications.

thanks I'm going to check that out. Do you know what type of doctor would handle the things you just mentioned?

Also, I just made an appointment to see a naturalist doctor. He has helped others with other autoimmune problems, I'm going to see what he says about my son. My son must have one of the most aggressive forms of ITP ive ever heard of. He had some IVIG & predisone 2 weeks ago, walked out with a nice count of 157,000. Today, only 2 weeks later, he's at 5,000 !! That's insane! I'm scared to death for his future. The stress killing me. I cant believe they cant figure this out. They need more researches doing more research.
Sometimes I wonder if we the regular people are doing more research than the actual medical lab techs or whoever is supposed to be working on a cure. Nobody knows anything im starting to feel.....its ridiculous.

Ant - many people have platelet drops like that....that is typical after IVIG wears off. Take one day at a time. People live normal lives despite ITP and if your son's ITP continues, you will both figure out how to fit it in and keep going.

Again, cures are not as simple as it might seem. There are no cures for any autoimmune disorders and some are far worse than ITP. Maybe someday.

I know. I'm actually glad he's even responding to the IVIG. There was a time last year when he wasn't, so things are better now. Anyway, I want to tell you a story as to why I feel as I do.

Ok, over this thanksgiving, my son began having pains in his private area. We thought it was UTI. Then slight blood began showing up in the urine. Btw, during this time he was on a immune suppressant drug, which I was against, because you need your immune system. Anyway, in & out of the ER 3 times in one week. Not bacterial. Must be a virus. Next day pure blood comes out, no urine. Scariest day of my life. We stop the drug, I give him immune boosting nutrients which the doctors agreed with. His body had to fight the virus. I do research, seems he had something called the BK virus, which produces those symptoms that he had, & it also stated people really only get that virus with a weakened immune system. So to me, he almost lost his life on that drug.

However, something amazing happened. During the week of the virus, his ITP was gone, counts were 257K. So, on my next visit I asked all 4 hematologists that work ay my sons clinic..."What is actually being done to cure ITP?" No direct answer. Then I asked "Who, or what facility is doing research on ITP, & how does that research work?" Again, no direct answer. I told them if I was researcher, I would look for things like exactly what happened to my son. A virus, somehow stopped the ITP. How did it do this? Did it alter the anti bodies so they no longer recognized the platelets as an invader?, or was the virus a decoy for the anti bodies, allowing the platelets to be left alone while the virus was being fought? These are the things & the questions that need to be analyzed...this is how progress & discoveries are made. They actually agreed with me, but really didn't have anything to say. That made me very mad, because it gave me the feeling that all is not being done to figure this out. If I was a researcher, I would be looking at things like this, & running tests. Maybe scientists can create something that duplicates the reaction that the virus had & possibly find a solution, but if nobody does anything, if they don't analyze situations like this, I cant see how they will get anywhere. I don't mean to sound so pessimistic, but all these things add up to make me feel so. They still don't even even know exactly what that virus was. Would be a good idea to know. Again, collect data, analyze, & help get answers. Im honestly thinking about leaving what I do & going into the field of ITP research myself. Anyway...thank you for all your advice & input.
One more thing. I went to 2 immunologists & asked their opinion of what I said above, plus an other issue of my son sneezing, every time he starts sneezing a lot, its associated with low platelets. They both agreed that things like are very interesting bits of info & should be looked at.

Ant:

There are ITP treatments that sort of do the same thing that a virus does by distracting the antibodies. Win-Rho and IVIG have a similar concept. Like a virus though, they don't last and like a virus, they produce symptoms/side effects. New drugs such as biologics are changing the way some autoimmune disorders are treated and they are specific to the disorder. The problem is that they manipulate cells and no one knows the long term outcome of these drugs. Something that might seemingly be a cure could turn out to have worse side effects than what is available now. Everything seems to be moving in the right direction, but it's a long, slow process.

There is a lot of research going on as far as ITP goes. There are some physicians who have dedicated their lives to research for ITP. Here is some info:

pdsa.org/resources/research-program.html

www.itpsupport.org.uk/research.htm

Ant:

Here is some info on a new drug in Phase 3 for ITP. These types of drugs are the closest thing to a cure, the only problem is that you probably have to keep taking the drugs to see results, just like the other ITP meds. What would we consider a cure to be? A pill that you take one time, for three months, one year, etc?

Taken in tablet form, fostamatinib blocks the activation of SYK kinase inside immune cells. ITP causes the body to produce antibodies that attach to healthy platelets in the blood stream. Immune cells recognize these antibodies and affix to them, which activates the SYK enzyme inside the immune cell, and triggers the destruction of the antibody and the attached platelet. When SYK is inhibited by fostamatinib, it interrupts this immune cell function and allows the platelets to escape destruction.

www.marketwatch.com/story/rigel-initiates-phase-3-studies-of-fostamatinib-in-itp-2014-07-16-8183350

Here is another advancement on the way:

consumer.healthday.com/circulatory-system-information-7/blood-disorder-news-68/scientists-discover-new-way-to-make-human-platelets-689938.html

hey sorry, didn't get to read your replies yet, will soon, thanks for the responses

that's very interesting, I'm going to print this out & show it to the doctor, see what he says. Also, I didn't read the article yet, but I heard there was a advancement in Boston where scientists created fully functional platelets.

There is a LOT of research going on for ITP, and some new medications in the pipeline. I know it's frustrating to see your child go through this, but it just isn't as easy to 'cure' ITP as it might seem to be. Some doctors have dedicated their lives to ITP and are doing all they can. The PDSA provides funding for research and really strives to educate and support patients and their families. Just 15 years ago, all that was available was IVIG, Prednisone, Win-Rho and splenectomy. It's really come a long way.