Don't know what is best for me

First: I'm scandinavian, so I hope my english is understandable (if not - ask!)

I got ITP for about 6 years ago. In the beginning, I got treatment - 3 times. My values went up, and then down, and they never stayed stabile. My 3rd treatment was Anti-D, and it was painful! My earlier treatmenst gave me headahe - so bad that I could not sleep, walk - or move my head at all. Since then I have been terrified for my platelets to drop.. I don't want treatment.. don't want it - and that fear combined with helthy food (without dangerous stuff like glutamat and aspartam, and a lot of vegetables and fruits), exercise and 8 hours or moore sleep every night, I manage to controle my values. But when I get sick, is very tired, eat bad food, don't exercise.. they drop. I almost never see a doctor.. and my purpuras and petechiaes are almost gone! Just some very few left...

So my questions is;
Can treatment really be bad?
Can the force of mind controle the platelet values (placebo)?

What bother me is: I have read so many stories about people with ITP. Every story is different - but everyone have ITP. Some feel sick. Some don't. Some get a treatment that work, but the same treatment don't work on someone else with ITP. What ecactly is ITP? How do we know that we do the right thing, if we don't know the truth about it? I'm terrified to take medicines that I don't know is good for me or not. If we read about the history of the science.. we're really in a eary stage! When I stopped to treat, it took my boody a while to understand that: To survive, I have to keep my plateletlevels higher. When they dropped, even under 10, I waited a few days. And then they went up again. And I learned what worked and what didn't to controle my levels.

I'm really confused. I KNOW that food, exercise, etc. is important for my levels. I've experimentet a lot! But I don't know what my ITP is caused by.. Why do I have it? There must be a why! It can't be impossible to find out why. If there is a virus or antibodies, there must exist a "microskope" or something that can see it on my platelets. Why do they use so much money on bloodtests to check on my values, and other "uneccesary" tests? I know they are low!? But what I don't know, they don't try to find out. And doctors can't answear my questions. It bother me. And if they can't answear my questions, how can I rely on them.. that they know what they are doing?

There is so much fokus on keeping the levels high enough, and so little on solving the mistery.

Froken - your English is just fine.

I'm going to tell you the same thing I told someone else the other day. It's impossible to answer 'why'. Why does anyone become diagnosed with anything? People get cancer....why? People get epilepsy - why? People get other autoimmune disorders - why? The bottom line is that with any illness, it's treated or managed. The same goes for ITP.

Bascially with ITP, they do know that the body produces antibdoies that destroy the platelets. The only way that the doctors know of to stop those antibodies are by using the treatments that they tell you about. No one knows why the body produces those antibodies, but that is the reason why platelets drop. There is a lot of research going on and many things have been discovered in the past few years. But there are about 88 autoimmune disorders and there isn't a cure for any of them. It's not that easy. In the meantime, all they can do is try to get the platelets back to a safe level.

You've had some bad experiences with treatments. Some people have had that happen. Luckily, there are other treatments to try if you need them. Maybe the other ones won't be as bad.

Froken, your English is much better than my Danish so don't worry about the language. ITP is a scarey disorder. To make it perhaps worse is currently there is no cure, only treatments attempting to control it. As Sandi said, there are many diseases whose basic cause is not understood. Billions, perhaps trillions, have been spend on Cancer research. While progress has been made regarding treatments there still isn't a "cure". The same is true for ITP - I've seen progress over the past 11 years - progress in understanding it and progress is treatments. Unfortunately ITP doesn't receive as much wide spread attention due to its rarity. This organization has helped bring focus and the sharkng of knowledge - practical and research.

I've said many times I think the hardest part of ITP is accepting it instead of letting it control you. Yes that's hard to do but not impossible. Start by learning all you can about ITP. Find a good doctor who has experience with ITP and ask questions and ask questions here also. Knowledge can bring comfort and confidence. ITP can influence our life, it doesn't have to control it!

As you've observed, there are many treatments but everyone doesn't tolerate the treatments the same nor is the reaction always the same. Pre-treatments are often helpful and are often used in the US. Ask your doctor about pre-treatments - they make many of the treatments easier to tolerate.

My best advise is to find a doctor who you are comfortable with AND who allows you the time for questions and works with you (instead of dictating without explaining). I also believe the more you talk with friends and family the easier it becomes to accept ITP. You now have an extended family right here who understands the fears, anxiety and questions that occur with a diagnosis of ITP. Post any question here and we'll all try to help you find your way in dealing with ITP.

To answer the question about placebos. I've read a lot of studies about the various treatments and placebo has never had any success at all.

There's some good information about ITP at www.itpvillage.com/default.aspx . You need to look around and click everything. In particular there is some nice written stuff in the Library and a couple of films in the Cinema.

Thank you so much for answering!

I have a really good doctor, but still, many unanswered questions. I don't know where I can find the answers (or who I can contact). During my 6 years with ITP, I have noticed many "interesting" things. I have found many symptomes, or what I'm going to call it, that I wonder may be connected with my low values.

For instance; pain in my spleen when I have been sitting still many hours per day, and for many days (reading and calculating because of school).
And why do I get nosebleeds when I get a flu? Because my immun system is activated, and produce more antibodies? Because my immun system get busy with the flu, and aren't focusing on some virus at my platelets?
And what about me being tired when my platelets are low? I have read that an unofficial test showed that 80% of the people that participated (I think it was 74) felt tired when they had low values.
Somewhere else I read that the platelets are transporting some kind of molecule to the brain, that are going to make us less tired... and then: less platelets => more tired. Is this true?

I belive that I'm not alone if I say that it's annoying that ITP is idiopatic, with an unknown cause. I'm very curious. I try to find out what gives ITP in my head - connecting pieces - but I'm no scientist/doctor.. It's impossible. But I cant stop wonder about ITP. I feel that the day I say "I'm sick. I have a disease I can't remove.. just try to controle. I give up..", that day I let ITP controle my life. And doctors are so afraid to "philosophize" about ITP, come with theories, etc. They only follow the book. I want to hear what they think and belive. If we stop wonder... we will never find out the cause for ITP.

I feel that most of the people today are thinking that: We don't know enough science to figure this out. Just let the doctors handle this. And I know this might be true. But I don't want to belive it!

So if anyone know about a site that write about theories or new discoveries about ITP, pleace let me know!

Froken,

I am not in the camp of people that believes we do not know the "why" of ITP. But since I'm really not interested in getting into a protracted argument with people here, I will give you some areas where you can begin researching, reading, and studying.

ITP is an autoimmune disease. It is known that approx. 75-80% of our immune system is in our intestinal system (gut, gut flora, etc.). So you can begin your research by reading about the immune system in the gut, the effect of gut damage on the immune system, leaky gut, healing autoimmune diseases via healing the gut.

Those should all give you routes to travel and study. It is in depth and intense when you get into it as you'll find lots of information about b cells, t cells, how they function, etc. but it's very interesting and will really guide you in understanding symptoms you see in yourself and why certain things you do/eat effects your counts. Since you are interested in the "whys" I'm fairly confident you'll find it in researching these areas.

All the best,

patti

Thank you very much patti

Froken:

This is as close as it gets to an explanation that makes sense (see link below). These are the theories. It gets much more complex than this even, if you want to read through a lot of medical info that might be too hard to understand. There are many doctors who dedicate themselves to ITP research...it is not ignored. It's come a long way in the past 15 years. We have no choice but to try to believe in the medical field and they ARE on our side. No, the doctors can't answer every question we have but that doesn't mean they don't care. They do the best they can.

Most ITP people who see their hematologists are probably the healthiest people in the office. We have that to be thankful for. All I can do for you is try to spin the perspective; people with ITP are lucky in some ways. It's not a disorder that causes constant pain. You can still lead a normal life. It's not debilitating. It's not progressive. It's not usually fatal. You can live a normal life span. There are remissions. You can still see, hear, feel, walk, laugh, get out of bed, etc.

Yes, there are some things that you have to do sometimes, like treat. It's not pleasant, but it's also not the worst thing. I think the day you say "I have ITP and I can't remove it or control it" is the day you accept it, not the day you give up. You don't have to think of yourself as 'sick'.....I never did.

It's good to be curious and it's good to research to try to understand. It's also good to try different diets and healthier lifestyles....can't hurt. It's about all you can do to take control of your life. If you can keep your counts at a safe level doing the things you said you do - I think you're doing great!


www.samizdat.com/itp.html

Froken, here is a tip that might help with the nosebleeds. After I had a massive nosebleed that I couldn't stop, the emergency room doctor packed my nose, and three days later, an ear-nose-and-throat doctor removed the packing and gave me hints for a healthier nose. The main thing was to keep it from drying out (which can happen from weather, heating and air conditioning, decongestants, lots more things). I use a saline nose spray several times a day now. I know this may not prevent all nosebleeds, but it reduces the likelihood of them.

Thank you very much The link had very good and explaining information

Pattie, your comment makes alot of sense. I feel my ITP is due to two very stressful situations. One in early 2000 and the other in the fall of 2004. Started monitoring the counts in March of 2003, counts of 70-80k. June 2003 count of 30k, bone marrow biopsy. Results negative. Put on Prednisone. Counts fluctuated quite a bit. Nov of 2004 count of 13k. More Prednisone. I could not stand Prednisone any longer and it was not working. Two transfussions did not last then Rituxin. Went through two depression phases in winter of 04 into 05. First one was pretty serious. The initial stress of ITP surely did not help the situation. ITP is one He** of a rollercoaster ride. But once you have accepted this disorder and learned how to deal with the ups and downs it does get eaiser. Positve attitude with minimal stress makes a big difference.