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New to ITP, my story attached, have questions 5 years 4 months ago #55049

  • DeeDee Marie
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Actually, Nomad, I don't feel you are doing very bad at all. I've made up my mind to go your route, if my platelets fall again. I've had ITP for 10 years and only two episodes during that time. But the last time in 2010 was really bad when they fell to "0". It took a few weeks to get them above 12 and about 5 IVIG treatments. Then went for the Decadron pulses.

I would actually try the natural approach like you do. I'm not crazy about kale, but I do like spinach. I should buy some kale, though, and put it in my salad as I do make a fresh salad every week for me and my husband. And, like they say, if you don't have the symptoms, you are doing good. ;)

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New to ITP, my story attached, have questions 5 years 3 months ago #55283

  • Nomad
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Don't buy curly kale...ewww Lol. I like Baby Kale. It has a milder taste. We've been travelling, so I wasn't as diligent about my drinks or being gluten free, but I did try. We drove all over the place looking for juice bars and I actually took my juicer. But, I caught a bad cold and I've had it for three weeks. So, I'm unsure if tomorrow's blood count will be decent. If it is, that would be interesting. I did make an effort to avoid gluten and did drink my drinks several times a week.

I'm a little shook up because I also take Papya leaf extract capsules that I get on Amazon. I think they help a little. I'm of the belief every little bit that helps is ok in my book. They are typically - little over $50 a bottle. Today, when I went to order it was $126. Hmmm,

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New to ITP, my story attached, have questions 5 years 3 months ago #55424

  • Nomad
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News to report. My platelet count went up. It's gone up by 10K or close to it each month for three or four months. Ive been taking the papaya leaf tablets, drinking my green veggie drinks and the last thing I did was greatly reduce gluten. Maybe it's time for me to keep close tabs on this.

I spoke to someone from the company that makes those capsules. They said they don't know why the price has been increased at Amazon. One can still order them direct from their company for much less. So, I ordered two bottles direct and am by-passing Amazon.

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New to ITP, my story attached, have questions 3 years 8 months ago #62912

  • KO27
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Hey all, I hope you've been well. I wanted to check in with an update. My platelets have consistently stayed in the 125-130 range since we remediated the mold in the "new" HVAC system at our house several years ago, and I am, as far as I can tell, completely asymptomatic.
As I said at the conference in Orlando, I'm not a 'mold truther'; I don't think mold is the answer to most people's ITP issues, but I also don't believe I'm the only person in history to have their ITP caused by mold.
I was originally told by several doctors not to bother trying to figure out what caused my ITP because a) It was impossible and b) that autoimmune issues are thought to be like avalanches in that it really doesn't matter what started it because it can't be stopped.

Both of these assumptions proved to be wrong in my case.

So it's perhaps likely that your ITP wasn't caused by mold; this doesn't mean you can't try to figure out what happened. In my case I was exposed to an antagonist (mold) and once the antagonist was removed I returned to good health in a short order and have had no relapses.
For me the giant red flag was that my platelet counts, which I graphed over three years, rose in the Winter and fell in the Summer and the wave the graph made perfectly aligned with my electric bill/consumption, which led me to consider the HVAC system which had been installed a couple of years before I was diagnosed.
For you, if your trigger or antagonist is environmental, it could potentially be anything- a food, water quality, air quality, an allergy to a medication, etc.

I'm writing this post fundamentally to suggest a course of action; that you should take a step back and carefully examine your own situation. The first thing you're going to need is data. Data makes analysis possible. In this case your data points are the results of your platelet counts. If you can handle it, and if you have insurance that will cover it, I'd suggest getting a platelet count from your Hema at least every two weeks, and to start keeping track of them on a graph.

This might sound like a middle-school science project, and the truth is that for most people it will probably be about as valid, but some people will see something pop out over time, and that something might help them learn why they have ITP. If they're really lucky, like I was, that data might even help them solve their ITP. That's not, of course, the most likely outcome, but I'm living proof that it's possible.

Ok, so you're tracking your platelet counts. Be patient. It's going to look like a mess at first. It could actually take you three years or more like it did for me, and obviously, it might never happen either, but you can't give up. You have to believe the answer might be available.

Once you have enough data, maybe two years overlaid, that you can can look for consistency over time, you can start to try to correlate the data with your environment. For example, if your platelets rise in the Summer both years, look at what you're doing differently at that part of the year- does your diet change? Is your heater dirty? Do you spend less time in one place, such as inside your house?

If you see a consistent change in your platelet count at a particular time of year, to me that says that the environment is playing a factor. It your job to figure out what part of your environment is doing it. It's a pretty good mystery, but it's one worth solving. Besides, you got something better to do? :-)

This is only meant to provide some thought and inspiration- it's not a fully laid out plan, but if people are interested I can try to express a legitimate path forward in more detail.

In the meantime, I wish all of you the best and thank you for your support over the years.

KO27
The following user(s) said Thank You: poseymint

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New to ITP, my story attached, have questions 3 years 8 months ago #62914

  • Nomad
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Glad you are doing well. I saw you in Orlando two years ago. We’ve moved to Orlando. I don’t recall who your Henatologist was. If you like this person, if possible, please message me. I’m on Promacta and not sure how I feel about it. Plus, I now have bad body aches. New home...mold unlikely an issue for me. Will think about what you said er researching potential causes and watching fluctuations.

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New to ITP, my story attached, have questions 3 years 8 months ago #62915

  • 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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Hey KO - thanks for the update! Glad you're still doing well!

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Re:New to ITP, my story attached, have questions 3 years 8 months ago #62922

  • PurdueRose
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Glad you figured out your trigger!

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New to ITP, my story attached, have questions 3 years 8 months ago #63082

  • KO27
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Nomad, I tried to send you a PM but I received a message saying I wasn't authorized to view the page, or something to that effect. I do like the Hema I used here in Orlando and would be happy to recommend him if I can figure out how to communicate his information securely.

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New to ITP, my story attached, have questions 3 years 8 months ago #63083

  • Nomad
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I’m going to try to send you a pm and if that doesn’t work, I’m going to leave my name and number with the PDSA Office and perhaps you would consider calling them if you don’t get a pm from me. I would like to know who you like best and also if there is anyone you think I might need to avoid. I live in the Dr P area, but it’s not absolutely necessary that they are in this area. My first name starts with “A.” Thank you for your patience.

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New to ITP, my story attached, have questions 3 years 8 months ago #63088

  • Nomad
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I could not pm you either. I left my name and telephone number with Brenda at the office.

We have a friont loading washing machine. Always had top loading. This one has a big tendency toward mold at that large gasket. My platelets dropped big time with the move to Orlando. I think it was mostly from stress. But, mold can’t be good.

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New to ITP, my story attached, have questions 2 years 7 months ago #66447

  • KO27
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Hey everyone, just keeping in touch- my platelet counts have continued to remain stable with no relapses and it's now been six years since my ITP was resolved. It was quite a journey, which several positive developments (along with a lot of misery) came from, not the least was was an improved understanding of the medical world.
This became extremely relevant about two months ago when my 43 y/o wife was diagnosed with breast cancer. Because of what we'd both learned dealing with ITP we were much better equipped to tackle her situation head-on and one of the immediate lessons we employed was to seek care at the best facility time and distance would permit. In this case it meant eschewing our local hospital in Orlando (large, well regarded trauma center) for the Moffitt Cancer Center in Tampa, which was a dramatic improvement in quality of care, organization and my wife's confidence.
She had a double mastectomy two days ago and the results were better than we could have hoped for, so it turns out that the medical education my ITP experience provided was pretty valuable both in having to courage to say no to the 'easy' choice of facilities but also in understanding a larger picture of what my wife was facing.
Her prognosis is excellent and we look forward to a long and wonderful future together. I just wanted to drop a line to both update my status and suggest that everything you're learning on your ITP journey could be utilized in the future to help yourself or a loved one when they need it, and I also want to reiterate my hope that you'll have the courage to make bold, educated decisions about where you receive your care. I really believe it can make all the difference.

Thank you,

KO27

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New to ITP, my story attached, have questions 2 years 7 months ago #66448

  • Nomad
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Very sorry to hear of your wife's Cancer diagnosis.
I’m glad she is doing better. Very interesting to me that you felt it best to go to the M. C. Center in Tampa.
I met you at the annual PDSA meeting in Orlando. We moved to the same city you live in. I’ve tried to contact you to no avail. I’ve had excessive problems with finding a hematologist in my new city.
I might see a Dr Gxxx in the coming months. Was he the Dr you ended up liking best?
I could use additional input.
I don’t know how to contact you. I tried leaving my name at PDSA. My initials are A. F. I lived in Miami and now live in your city.
I have been unhappy with my doctor as I feel he doesn’t have a lot of experience with ITP or the Med I’m on and am concerned for my health. Please try to reach me or leave the name of the best hematologist you know in our city on this thread. Blessings to you and your wife. Please. I’m concerned for my health.
I have also left my name and number with Brenda in the office and gave her permission again to give it to you if you should inquire. I also think it would be ok if you left a name of a doctor you like here though.
Thank you.

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New to ITP, my story attached, have questions 2 years 7 months ago #66451

  • MelA
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Very sorry to hear of your wife's cancer diagnosis but delighted to hear all went well - you both seem to have a teriffic attitude and that is 1/2 the battle! My best to you both!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New to ITP, my story attached, have questions 2 years 7 months ago #66484

  • KO27
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Nomad, I'm trying to think of how to contact you. Perhaps if you have an Instagram or Twitter account you can share I could DM you? If you know my name please send me an Instagram or Twitter DM, or go to my website which is my name dot com. I'm absolutely open to communicating with you and helping to whatever degree I can.

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New to ITP, my story attached, have questions 2 years 7 months ago #66485

  • Nomad
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I vaguely recall your first name. When we moved to Orlando, I lost my folder with several ITP related items including notes from that conference so long ago. I don’t do Twitter or Instagram. Have you tried speaking to Brenda at the PDSA office? The number is: 877 528 3538? I have given permission for her to speak with you about contacting me.
Maybe you can give her your name and phone number and she can contact me or she can give you mine.
I did try to pm you here and it seem to go through, but I’m VERY unsure. It normally says “error” every single time. I’m very unsure if this function works. Please note I might start a support group for our area.

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New to ITP, my story attached, have questions 2 years 6 months ago #66521

  • KO27
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Nomad, I just spoke to Brenda and it seems as though she may have lost your information so I gave her mine. If you call her she should be able to give you my name and number. I can't believe it's this complicated, but I did try check my Private Messages but the system declined my effort. Hopefully we can talk soon.

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New to ITP, my story attached, have questions 2 years 5 months ago #66784

  • ecoclayton
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I just wanted to throw in a quick thanks to you all. This discussion/story has been very helpful and encouraging (maybe a little discouraging too) being just diagnosed with ITP on 5/23/19. I have a ton of new information to think about and am in agreement with KO27 that something has to have caused this to happen. I have scheduled and appt with an allergist since I was cleared of any other diseases that could be causing this.
Thank you,
Clayton

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New to ITP, my story attached, have questions 7 months 6 days ago #71162

  • KO27
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Hey all, it's been a while and I wanted to check in. I'm at something like +8 years from resolution and my platelets remain completely normal.

The more time passes and I have an opportunity to reflect upon what I went through, the more frustrating I find the state of ITP treatment.

I want to reiterate a few things here:
I was diagnosed with chronic ITP about 12 years ago, and I pursued every treatment and drug that was known/available/suggested at that time. For a full list and timeline, read the thread, but I had Dexamethasone, Prednisone, IVIG, Rituxin, etc., and I even had WinRho which gave me a potentially fatal allergic hemolytic reaction. Back then, splenectomy was a 2nd line treatment after steroids, but I wouldn't agree to have my perfectly functioning spleen removed.

Everything worked, but not for long, and it was a constant cycle of harsh, risky meds just to keep my head above water.

No doctor that I ever ran into, in the entire journey, not matter how nice or compassionate they were, was willing to entertain the possibility of 'curing' ITP. It was all about treatment. I was told, repeatedly, that autoimmune issues were like avalanches- once the snow starts coming down the mountain you can't stop it, you can only deal with it. I was told there is no 'putting the genie back in the bottle'.

But I did just that. No splenectomy, no more drugs. I methodically figured out what was causing my ITP; mold in my case, eliminated the cause, and my chronic ITP disappeared. That's the reader's digest version- the details of how I did it are presented in real time in this thread.

Doesn't sound real? Doctor told you that doesn't happen? I totally understand. I have a journalism degree (which is kind of like a skepticism degree) and I'd be skeptical too. Good, you should be. But the truth is the truth, and it happened. I'm not selling anything; my only motivation is to share my experience, in part to help others, and in part to express my complete astonishment at how disinterested the medical community is to discover the causes of autoimmune issues.

I met ITP patients along the way, lots of them, who had their spleen removed in hopes of ending their ITP nightmare, but instead who turned out to be in the roughly 1/3 of ITP sufferers who's platelets were instead being destroyed in their liver instead of their spleen. Their ITP didn't get better, and now they were missing an organ. That's like a solution from the middle ages or something.

Has new medicine been invented in the last ten years for the treatment of ITP? Absolutely, but by and large they are just more creative ways of hobbling your body's immune system so the platelet destruction slows down while you're that much less able to defend yourself against things you truly need your immune system for.

It's a vicious circle and everyone from your doctor to the people that run this forum know it, feel badly about it, and wish there was another way. Thoughts and prayers and all that.

But no action. No investigation to try to determine the proximate cause of ITP in an individual. There is lots of money in treatments (have you seen what some of this stuff costs???), but no money for a cure. The subscription based economy as healthcare.

And, reflecting back, that is my greatest frustration. When I solved my ITP, conclusively, I spoke at the national ITP conference when it was held here in Orlando, and I gave a detailed, play by play speech of the steps I took to resolve it. I naively thought that medical professionals would be interested, would want to know more, would perhaps even want to collaborate in an attempt to do something groundbreaking by curing an autoimmune issue.

Nope. I got crickets. I was told that I was just an anecdote. One of the doctors said he was happy for me, but that my story wasn't useful because it couldn't be duplicated, and then he stepped up on stage to talk about the drug he was being paid to study to "treat" ITP.

I'm not going to rail on doctors or pharma companies because in many cases they are doing the best they know how to do, and they are providing treatments that do help people keep their heads above water where patients would be much worse off in their absence, but there has to be more.

So I'm going to start by doing something I haven't done before. I want to ask if there are any Hema/ITP docs that are actually reading the forums, and if so, ask them if anyone has any interest in attempting to identify the proximate cause of ITP and attempt to cure it in some percentage of patients. I would really like to know if there is anyone out there who is trying or who wants to try.
Yes, I fully understand that it's almost certainly not one thing- my ITP was effectively an allergic reaction to mold, and while that doesn't mean it works the same way for everyone else, it almost certainly means that I'm also not the only person for whom ITP is an allergic reaction. So it's a start.

Anybody in medical or pharma want to try? Talk to me.

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New to ITP, my story attached, have questions 6 months 3 weeks ago #71207

  • Painter13
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I really agreed with what you said, it is true! Seven months in with ITP and the doctor gave me IVIG and steroids for a week and thankfully my number came up! And then down, with three times I was treated for 6 days with steroids and numbers came up to 40s! So I am trying a new direction, high D3 for steroidal effect, k2, better diet, herbs, intermittent fasting and one meal a day when my numbers permit me! Lots of research, of course, getting ready for first blood test next week, without Prednisone! Hoping my numbers are going up! Trying to take control back of my life! There must be an answer, but it is up to me to find the answer, if there is one! I have my first time with a Naturalpath to see if he can give me some good advice! My doctor is a sweetheart, but she only has tunnel vision I am afraid! Still it might be my only option, but I am not willing to give it up yet! If I am a going to be a Guinea pig for doctors anyway! I think I want to check out my options as being my own Guinea Pig for awhile!

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