My Papaya Leaf Extract Just Arrived!

Me too, tetanus. But I can't remember if I got the blood test or the vaccine first. It was at the gp's and he doesn't get the results immediately. That's when it was 30000. I had a slightly low count months before- 120000- so it may not have anything to do with the vaccine.

What vaccine did you have prior to coming down with I.T.P.?
I had a Shingles vaccine which definitely caused the I. T. P. In my case.

My ITP was triggered in 1989 by a gamma globulin injection my husband's company required we get before going to Tokyo to look for an apartment - it was very very shortly after that injection the telltale red dots appeared. And gamma globulin/IVIg is a treatment for ITP. Then in 2002[?] it was a tetanus booster that sent my count to the gutter & I had a WinRho IV which helped.

I get flu shots every year and no problems, got the pneumonia vaccine and no problems - but gamma globulin & tetanus booster did me in.

For me and my ITP "case" I'd much rather have ITP than shingles [have had it 2x and that is 2x too many].

My hematologist told me not to get any vaccines since I came down with ITP in April 2010. Therefore, I have not had a vaccine in 10 years.

Lady Elly - I was told not to get any live vaccines. I will always get a flu shot!

I believe the vaccine was Gardasil. All I remember about the vaccine is that it made me feel horrible. I had muscle pains, fever, and fatigue. I'm not sure if this is a normal reaction to a vaccine but the pediatrician gave me two rounds of it. This was at my 11 year old check up, I believe, that I received the first round of vaccine, and shortly after is when I first showed low platelets, even though I wasn't diagnosed until this past summer. It could have been coincidence, since autoimmune disorders run in my family, but maybe it has something to do with my ITP, because from the research I've done, the vaccine hasn't always been dependable.

Oh BTW. Please add 'probiotics' to my earlier list of natural treatments.
After reading through user 'MDgal' posts, I think probiotic supplements are good for alleviating Candida overgrowth. Her story is interesting.
pdsa.org/discussion-group/search.html?searchuser=MDgal&exactname=1&searchdate=all&order=inc&childforums=1&limit=30&start=134

Teen, I'm working on a small study on eventual comorbidities on those with ITP. By family auto immune disease do you mean things like Fibromyalgia, Hashimoto's, and Lupus? Things like Rheumatoid Arthritis and Parkinson's? Or ?
Also, this post by 'MDgal' might be of interest to you:
'GARDASIL (ITP CAUSER)'
pdsa.org/discussion-group/6-general-itp-discussion/26953-gardasil-itp-causer.html#31407

Hashimoto's, my mother and sister have it, my moms being worse than my sister. I'm not sure if my ITP was triggered by the Gardasil, or if it was developed simply because autoimmune disorders run in my family. Thank you for that article, I will most definitely be sharing that with my mom.

Has the papaya leaf extract been working for anyone?

Hi there, I think it helped my son but I can't be sure. I did do a lot of reading on its safety profile at the time and found it was safe to try. It's been studied in dengue, so the medical establishment knows its safety profile well. I would definitely clear it with your hematologist before starting, though!

As I've said elsewhere, papaya leaf extract works for me, no doubt. I've been working on a maintenance dose, and its hard to find (meaning that it takes a lot of time to find the right dose--the product is easy to find). It either is too much or not enough. Now, I am trying 4 500mg pills at a time, but only once every 5 days. Will see how that goes...

4 papaya leaf extract pills every 4th day has finally given me a level line trend at a good high number in the upper 300's! I got a bit aggressive, thinking my number might be too high, but it worked! First time I have felt that I have found my maintenance dose. 

I tried this same thing in February, 3 months ago, and got a 300 number, but it was up from before and I mistakenly thought that it was too much, or should I say I thought it was more than I actually needed to take? I would rather take less if it would work, but I'll take it. It's been 8 and 1/2 months to get to this point, 7 months using papaya leaf extract and searching for the combination. 

Well, level line did not continue. Platelets went way down,  possibly due to allergy season. My maintenance dose did not cut it, anyway. Only good thing, I think it will give me a chance to take that thrombopoietin test, which in my estimation, should be taken when platelets are low, and not on any medication. Laying off on papaya leaf extract for a couple extra days, to help the test. 

It worked out waiting to do the test, although I haven't gotten the test back yet. But 4 days of papaya leaf extract, even after waiting 3 days for the thombopoietin test, got me up past range to 477 after being most certainly 10 or less. Potentially 50 fold increase in 4 days. But I do have the emergency dexamethasone if I need it now. Not that I have proven that it even works by itself. So, does dexamethasone work? Not sure. Does papaya leaf extract work? YES. Through the 9 months of having this, papaya leaf extract is the only thing that I have taken on its own, so therefore the only thing that I can say definitely works.

Ok, I understand that what I just said there, "50 fold increase of platelets in 4 days" is considered Extremely UNLIKELY FOR ANY METHOD. So, just tried to show the proof. I had a nice shrunken screen shot of my platelet trends, and it was beautiful, sitting in my new post window, but when I posted it, it was a 100 lines of jibberish. Oh well...

So you're just going to have to believe me (which you probably won't), that papaya leaf extract is very very efficient, going to all the best places (megakaryocytes, etc.), at raising platelets. That's the goal, isn't it? Your mileage may vary.

 
You know, what's really interesting, is that if I look at my platelet trends, the up-slope angle is always nearly the same (except that my papaya leaf combined with dexamethasone was slightly less steep than without dexamethasone, which doesn't speak so well of dexamethasone). And my down-slope angle with my papaya leaf maintenance dose efforts, is nearly the same.

Sooo..., its like a switch is turned on and off. I only had one good level line in 10 months. So, how do you keep the switch on is I guess the question. How much papaya leaf extract does it actually take, for maintenance? Its that switch! My effort now is 4 pills every 3rd day. Its a constant battle, as they say.

Put a slightly different way, when I am gaining, I always gain at the exact same rate per day gain of platelets, and when I am losing, I lose at the same rate per day loss of platelets. But, I gain quicker than I lose, fortunately. One time though I went from 4 platelets to 8 platelets in a week. So maybe there I did a little more losing, and then toward the end of the week, the switch was thrown and it started to gain. Maybe.... Its a little surprising that the gains are so consistent, since I often don't have the full week to make the gain, since I start the papaya leaf extract late, but I guess maybe I have been consistent actually with only having 4 days for it to actually increase. So I guess that's why it has been consistent.

Again, how do I keep the switch on? And if the switch is always on, won't that send the platelets sky high? Or will the natural governor take effect. Do I still have a governor??? Maybe the dexamethasone is more of a balancer than an impressive increaser. Interestingly, when combining dex with papaya leaf extract, the next period has been more of a level line, both times. So maybe the answer is a low dose prednisone with the papaya leaf extract. But are the side effects actually worth it, when I can get along with the up and down of papaya leaf extract on its own?


 

I think that I will do the 2 week or so high dose pulse of ple, and skip trying on the maintenance, since it doesn't seem to flip the switch anymore. I will try to stay between 140 and 500.

Well, 8 days without papaya leaf extract was too much. More adjustments... In fact, the initial pulse didn't work, so back in the basement because of 2 week cbc increment. Took 2 weeks to find this out.

I could try adding Resveratrol to papaya leaf extract. Its a bit questionable because it has anti-platelet properties, but it can control auto-antibodies, which is what is possibly making my papaya leaf extract inconsistent, without dexamethasone, lately. It may be very questionable as it could delay clotting. So, probably won't dare use it. Maybe curcumin and resveratrol together. They are both blood thinners, so, can be scary, but could work, due to fighting auto-antibodies... Who knows?

I did decide to use the resveratrol and curcumin (and quercitin) at the same time as the papaya leaf extract for a couple of days in a row. This may have been what flipped the switch. I did use quite a bit of papaya leaf extract this week. 

12  to 505 platelets in one week. Now I'll be good if I can do a pulse just before my 2 week blood test and shoot the numbers back up (they will be down to middling by then), but that may take some luck. If the switch does flip at 200, how high will the numbers go, or do I somehow have a limit? Will I ever see 600 or more? Not wanting to... If you put preference on avoiding low numbers, you could run more into high numbers.

That is a huge jump in a short time - why do you want to do that?  Have you heard of a stroke?  Just be careful - not everything is good for everyone.   And why would you want to make your hematologist think your number is the norm by wanting to get it high again before you see him/her - giving a false # really.

Thank you for asking, and being concerned. 

Well, its complicated, and less than ideal, I admit. Here are the factors at work:

1, I don't know how much I am going to raise my platelets. Sometimes I get no reaction. Its like flipping a switch. Unfortunately, for me, papaya leaf extract raises my platelets fast when it raises them. Actually my first and only hospital stay raised my platelets from 5 to 515, and that was without papaya leaf extract, so maybe I just have a very reactive condition.

2. When I go under 10 platelet level, my doctor pressures me to get them up. Last time I thought I did what it would take to raise them fast, and they went from 5 to 12 in 4 days, not fast. But then one week later they were at 505. Its just unpredictable. I'm not surprised anymore when they go up fast, but unfortunately it doesn't always happen. So, that's my excuse for accidentally going up high. 

3. Of course I and doctor want to keep them above 10, so my only choice now is to try to stop the plummet in the middle, and not at the bottom, but obviously it could go even higher during that effort. I'm not trying to fool the doctor. I'm just trying to use my 2 week blood test to my best advantage. I need to send the numbers high just before the blood test, so that I MYself know they are high again, instead of plummeting. If I fail to do this, and I might fail, then I may see a number around 200. Now, you might think, as I have in the past, that 200 is great. Well 200 is just on the way to 5 for 2 weeks later, so I will have to point that out, and request a special one week blood test, since I don't usually go that often when the count is "normal". 

Now, Mel, you may have thought that I was going to take the supplement like just before my blood test and "have a false number, really", but I mean take enough ahead of time so it gives the blood test the time to show a real raise, not a "false" lack of raise, if I understand what you thought. Part of my goal is to please my doctor without going to other drugs. But, I need to know my true numbers more than anyone.

4. Now, of course I'm glad to have as many blood tests as I have, but if I had total control, I would do things a little differently. Until I have my own at-home blood test, it is what it is. But, there is no way to avoid these 500 numbers, by doing what I'm doing. Even daily tests would not avoid these high numbers, I don't think. But daily, or weekly tests could help me avoid the low numbers. We're all at the mercy of the blood tests. In my case, I have more freedom with weekly blood tests when the numbers are low. As far as seeing the doctor, I don't see the doctor. He sees all of my numbers and messages me when they are low. And, I actually see all the numbers usually before the doctor sees them. And of course when the doctor points out the numbers are low, well, I already know the numbers are low. He never points out any problem with going up high and quickly.

Back to 165, so a worse drop than to 200. Have to try another pulse of papaya leaf extract, and hopefully get a blood test in a week.

Your count is within range why do you want to increase it.

Also why do you want to please your doctor?

MelA wrote: Your count is within range why do you want to increase it.

You have to look at where its trending, not where it is. So, its gone from 505 to 165 in 2 weeks. My efforts at turning it back up were unsuccessful. I KNOW that this means that the numbers will keep descending to about 5, which will take less than 2 weeks, if I am unsuccessful at turning the "switch" to huge platelet-increasing mode. My numbers are a big saw-tooth chart where numbers are either going up hugely or going down hugely. I never actually have been successful at turning them in the middle, but I thought that was because I hadn't tried hard enough. Unless some survival mode determines when the "switch" gets thrown, when they are low. Anyway, to keep them from the 5 area, I have to realize that I'm in the danger zone and heading for inevitable basement, if I can't turn it early. This medication does not work, for me, in any way similar to other people's results with other medications. It works, but in an out-of-control way, especially lately, so I don't know if it will be my last medication, by itself, but welcome to ITP, right? Maybe I'm just missing some other natural that can fight the destruction aspect...

MelA wrote: Also why do you want to please your doctor?

Well, that is an interesting question. I guess you tell me. I thought he could always say, if I don't try to please him I should find someone else. I mean he does give me the blood tests that I need, so I don't want to change. Am I worried too much about pleasing him? I mean he is being reasonable. He tells me that I should take dexamethasone, but he accepts that I want to try more papaya leaf extract before I settle for the dexamethasone, which would be an add-on to the papaya leaf extract. He just stays far away from the administering of the papaya leaf extract.

Doctor agreed with the trend pointing to a necessary sooner blood test. Will have one in a week or less. 

The highest my count has been, that I know of, was 401k and that was too high for my liking.  That 505k would have scared me - too high is stroke or heart attack risk.

Sorry it just sounded like you wanted to make your # high before you went to see your hematologist.

How long have you had ITP?     Would it help do you think if you relaxed and quit trying so hard?   We used to have a monthly gathering of ITPers at one of our houses - there was a man who had a count of 5k and never went higher - he didn't let that stop him for living, he & his wife even adopted a child.   A lady went to London to have that test ( can't recall the name of it, can't get it here ) done to see where her platelets were being destroyed - test showed it was in the spleen.  She came back here and had a splenectomy, count went up for a couple months then back the the normal (for her) 5k, so the splenectomy did not work, she was a happy person and didn't let the low count stop her from living.   Everyone in our group had low counts, not as low as those 2 though, most of us said pffffffft to ITP  

   

Well, that's another way of looking at it, I guess. But, 5 count is scary. I have had it about a year at least, 11 months that I have actually known, though. 

I've seen 4 count. So, I don't really see how its an option not to treat it. How do you take blood counts, if you're not going to treat? 

I think I could settle it down with prednisone added to the papaya leaf extract, but I don't really want to get into chronic use of prednisone. And that is what it would become.

I appreciate your feedback, and looking at it from another point of view, that is easy to think is not even an option, sometimes.

So you personally fear high counts more than low counts? I mean over 200 count is supposed to be scary (bad) with TPO agonist drugs, but I'm not sure that max applies to papaya leaf extract. Who knows...