My Story

On December 20tt of 2012 I turned 60 years old. I was very excited for my Birthday Party as my sisters were flying to Minnesota (a place no one visits in the winter), my 20 year old daughter would be home from college and all of my closest friend would be in attendance. I was excitedly creating the start of the most prosperous, healthy, productive decade of my life. I had been reviewing the 1st five decades with joy and satisfaction. About a month before my birthday, I started seeing a new Chiropractor/Naturopathic doctor who was working with me on strengthening my immune system. He prescribed a number of supplements and vitamins for me to take at very high dosage levels. A few weeks into taking them, I noticed I was bruising and by my birthday, I had over 30 bruises on my body. I stopped taking the supplements when I realized the high levels of Vitamin E and Omega 3's could cause bruising. The bruises kept coming and I spent a week in Cancun covered up and with a splitting headache. When I returned to Minnesota, I went to the doctor and a blood test revealed that my blood platelet was at a 4 and it should be at 150 or more. Blood platelets are what cause the blood to clot. I was hospitalized for 4 days, put on Prednisone, given IVIG transfusions and since that day my platelets have not gone over 11.

My future looks different. It's on hold. I have an acute awareness of everything that can hurt me. I haven't driven alone since 12/18. I have a cut resistant glove so I can chop an onion. I am jittery and tired at the same time due to the medication and have a hard time concentrating.

Many people live with this condition for year or life. I need my platelets to get up to at least 50 so I can feel safer. I need to get off the medication and I do not want to go the medication route.

I have read about many people treating this naturally through meditation, homeopathy, healing touch massage, etc. I have found a homeopath who has treated this condition successfully and will see her on 1/21. This is very encouraging. My husband and I signed up to be trained in Transcendental Meditation next week and I am looking forward to it. I have connected with a Healing Touch massage therapist and will be seeing her and I am seeing a new doctor at the University of Minnesota on 12/18.

I am committed to transforming this condition and I am a person who hates things that go slowly so I am having to learn the art of patience. I am considering this a spiritual evolution of some sort and opening myself to the angels who are available to support me. I am committed that this is what needed to happen for me to have the best decade of my life. I am trusting that the money we need will come as we need it and in the end I will generate the money I was planning on this year.

I am available to provide support to anyone who needs to bounce your thinking or emotions off of someone. I have a new appreciation for what it take to deal with a chronic, critical medical condition that affects your daily living.

Love and Light to All
Patti

Hi Patti

I read your story and I was struck by how frightened you are of ITP and how much it has affected your lifestyle. Fear of what might happen is often the worst thing about ITP.

Its true that some people do die of ITP, but generally most of them get on OK with low counts. Its not something that you would do from choice but there are people on this board who don't respond to treatments who have done it for years with little going seriously wrong. You could continue to put your life on hold while you look for a treatment that works, but that might take a long time, so its probably best to try and get on with things as normal - don't let ITP put your future 'on hold'.

You seem to have put some sensible changes in places to improve your overall health - I might try some of that myself!

Alison

P.s. I don't have ITP, but my son has had counts generally under 20 for the last 3.5 years. He has a normal life, has not had any serious incidents, and generally takes very little notice of ITP. I know ITP is more serious as you get older, but I just wanted to point out that a normal life and ITP aren't necessarily mutually exclusive!

Patti:

ITP is not debilitating. Most people can live pretty normal lives with a few lifestyle changes if counts are low. It does take time to adjust emotionally to the diagnosis and find your comfort level, but most do.

I was diagnosed in 1998. I was never hospitalized and rarely missed a day of work. My counts have been as low as 3k. I had three young children at the time and drove them all around after work to their various activities. Life was too busy to just stop.

I am telling you this so that you can see that life goes on. Of course it's scary, but no one ever bled to death from a finger cut. It might take a bit longer to stop, but just apply pressure and you'd be fine. The platelets that you do have are large and sticky, so they work very well. People with ITP tend to have reticulated (new) platelets and they are larger than older ones. People with ITP also tend to have platelet microparticles (more than people without ITP) and those also help with clotting. They are very small and are not counted in a CBC.

Being 60, it would be wise to have a bone marrow biopsy if you haven't already.

Honest, you can look forward to the next decade of your life. Life as you know it isn't over, not by any means! It's sad that you feel that way. If you do go the 'natural' route, please do not stop seeing your doctor.

Read the link below - it will help.

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Thank you all for the reassurance that I don't not have to be as worried as the doctors seem to think. My counts were down to 4 today and they want me to get a platelet transfusion (which made no difference) or more IGIV which only brings them to 11. I didn't know whether to be overly concerned until they rise to 30 or 40 and your post helped a lot. I am definitely going to keep seeing the doctor while I go the natural route. I have a call set up with a woman locally who has brought her platelets from 4 to 300 over 2 years with Homeopathy and I am seeing her homeopath on Monday. It really helps to get other's feedback who have dealt with this for a long time. I am holding off on the bone marrow for now as I don't get intuitively there is anything else going on and I have a strong aversion to other complications from that.

I didn't mean to occur as so sad or like life was over as I know it. I am actually encouraged to create a new way of working and I am relating to this as a spiritual and evolutionary wake up call.

Patti:

Platelet transfusions do not help ITP and are not normally given unless there is active bleeding. I'm wondering how many ITP patients your doctor has had. A second opinion wouldn't be a bad idea. Did you discuss any other treatments?

I wouldn't tell you to not be concerned, but you don't have to stop your life. Symptoms are sometimes just as important as the number, and if you have few symptoms, you're doing okay. Symptoms can vary from person to person.

A bone marrow biopsy is recommended for people over 60 because they are more prone to MDS, and sometimes the first symptom is low platelets. It happened to the mother-in-law of a friend of mine. They thought it was ITP, but it wasn't. In that case, treatment can be different. The BMB isn't as bad as it sounds.

Patti, Patti, Patti!
How are you liking the return of single digit weather?

Decreasing the prednisone helped with my jitters and nervousness about moving around and just living. I finally started driving myself to some of my doctor appointments, which felt incredibly liberating. Of course, I take side roads where the speed limit doesn't exceed 35 and I try not to drive during 'peak driving hours' but I'm still counting it as a win!

Within the past 4 days, I've managed to add several new bruises to my arms and legs. Two weeks ago, this would have caused an all out panic. Now I'm not even phased. I'm sloooooowly beginning to adjust to all of this (but I am still SUPER OBSESSED with my platelet counts).

I had a platelet transfusion when I was in the hospital and my platelet count was camped out between 1 and 3. My doctor made it clear that the only reason we were doing it was because she was uncomfortable with my count being below 5. Naturally, it shot up but once my body figured out there were platelets to kill, it took to attacking them immediately. The results didn't last long.

It seems to me that you're very passionate about (what I would call) alternative-medicine practices. I just hope that you'll keep western medicine options open if you really need them in an emergency or if an immediate situation arises.

You're my Diagnosis Buddy! We gotta stick together (and by stick together I mean... stay alive!)

Feeling a bit blue tonight. Have successfully kept my spirits up all week. My platelets were at 3 today and I see my new doctor tomorrow. I am fearful that she will want to hospitalize me. I don't want anything other than IGIV as I see the homeopath on Monday and don't want anything stronger in me. I imagine she will want me to do the bone marrow as I am over 60. Ugh it scares me. I don't want the IV's as they hurt my arms. I have a huge bruise on my butt that hurts a bit and I feel like I am catching a cold.

Patti:

Question - why do you want to see a new doctor if you won't allow treatment or a bone marrow biopsy? Of course that is what she will say. It's in your best interest.

IVIG is very temporary and your response was minimal. 3k is low and should probably be dealt with.

P.S. I know I told you that you'd be okay, but I didn't mean that you should not listen to doctors!

Patti, if you are going to Masonic Clinic, I very much doubt that a doctor there would want to hospitalize you if you are not actively bleeding. The doctor will want to talk to you about different treatments, and will probably encourage you to start a treatment, especially since the low counts are affecting your outlook on life (and also because you don't have a track record of how your body deals with low counts).

If I could recommend one thing, it would be to listen and to accept the information provided by this second opinion doctor. That doesn't mean you jump into treating, but if you aren't open to listening, then the visit is a waste of time.

I personally do not believe in homeopathy, but I know that many people try to take the best of both scientific and alternative treatments and blend the two. Please don't write off either, and please don't "hold off" on what may be a vast improvement to your platelet count because there might be something better around the next bend in the road.

Patti, I hope you'll check in and let us know how your appointment went.

Tamar,

I know you an Sandi may not agree with me but I have chosen to go the natural Homeopathic route. I did not see the new doctor on Friday as my appointment time got messed up. I am waiting a few weeks to see while I work with the Homeopath. I am committed and excited by the process.

I will keep you updated.

Saw the Homeopath today. Spent 4 hours in conversation and love her! May not have a remedy for a few weeks but I feel centered in my decision to take a natural route to health. She is a former pharmacist and has me on a schedule to taper off Prednisone (hooray). My husband is out of town this week and I have friends coming over for dinner every night. Very fun.

I hope things go well for you Patti. I am all for people making their own decisions as long as they do their research first. Please keep us informed.

Wow, Patti. That's quite a decision. I don't think I've ever seen anyone go that route so soon after diagnosis and I have been here since 1998. Most people ease into it while under a doctors care. Good luck to you and as Tamar said, please keep us updated.

Patti,

Good luck. I hope you have success! Please keep in touch and let us know how it is going.

Jeffrey71

Patti,

I'm excited for you, and pleased that the two of you seemed to hit it off so well. I thought you would like her. I think it's difficult for someone who's never been to a homeopath, to realize how powerful that initial appointment can be, so don't let other's opinions dampen your enthusiasm. I think that most of us, if we listen to that inner voice, know when we're going down the right path. It may not be for them, but they are they and you are you.

To me, it seems much more sensible to try the least invasive, least toxic, least damaging approach FIRST, rather than using it as a last resort. I have seen all sorts of so-called "incurable" diseases completely resolve with Homeopathy alone, and generally in a very short time. But, those that have used any of the immune suppressants, especially if for very long or at high potency, will usually take a much, much longer time to reawaken or balance all the intricacies of the immune system. It can be really challenging to try and undo the damage, after the fact, especially when it's often on top of trying to mitigate the cumulative effects of antibiotics, vaccines, junk food diets and the like.

So, patients that have not gone down the road of Prednisone or similar, are much more likely to be done with ITP in a short time, when treating with homeopathy. There's simply not as much 'damage'to be undone. Homeopathy is also one of the least expensive treatments you can use, especially if you consider that a good remedy will act on every part of your being, and not just the platelets. It's One-Stop-Shopping! I always say that with homeopathy, instead of side effects, you get side benefits. And, I'm simply shocked and appalled to hear the huge financial burden that comes with most of conventional medicines treatments. There's really something wrong with that whole system!

So to me, the better question would be "Why wouldn't you choose a natural approach, first?"
If it doesn't work for you, the other will still be waiting there for you.
But, the chances of it working for you are greatly increased, as your body only needs to correct the ITP, and is not having it's immune system suppressed, manipulated or destroyed. You will never convince me that any of those are a good idea.

With my daughter, we also chose homeopathy right from the first. It took six months before I found the right remedy for her, and we did use conventional treatments until that time. But, if I had the same knowledge then, that I do now, we definitely would have done the "watch and wait" approach instead. And once I DID find the best remedy for her, I saw dramatic changes in her within 12 hours time. It took a couple more days for the improvement to be seen in her platelets--from 11k to 411k--and she has been in remission since then, 8 1/2 years now.

Please keep me updated, Patti!
April

april wrote: So to me, the better question would be "Why wouldn't you choose a natural approach, first?"
If it doesn't work for you, the other will still be waiting there for you.April

Because her counts are 4k.

I'm also interested to learn about the costs of homeopathy, since april mentioned the burdens (indeed!) of the other medications. I've never seen anyone post here about the costs of the services and preparations for homeopathy.
Erica

Here is an article that might be of interest. Whle it is in Wired magazine, not a top source of medical research (!) it cites the research study on which it is based: www.wired.com/opinion/2013/01/dr-feel-good/

The idea is that the caring attention given more by the alternative practitioners (a four hour intake? From someone who is sincerely caring? In our dreams!) that makes people feel better although it doesn't actually address the underlying illness.
Erica

I promised myself I would NOT post here...I guess since it was only myself I need to say ONE thing! Homeopathy is not meant to REPLACE your doctor, you should still see a doctor and get regular tests..I AM NOT one to speak up, but just pretend something else is going on, something that can be found in the next week or 2, or even in a BMB now the homeopath is ONLY treating ITP!

PLEASE PLEASE understand I AM totally for trying homeopathy, I truely hope it works, but it should be an addition, not a replacement...

You can refuse treatment, that is totally up to you, as the decision all together is, but it would be much wiser to see BOTH, and get the correct test atleast..

I swore I would never come back to this place because of posts like these last few. But I'm so angry right now either my head is going to explode or my computer is from something hitting it. REALLY? Really? BECAUSE WE SAT AT ZERO - SEE THAT- ZERO FOR 3 DANG MONTHS UNDER A DOCTOR'S CARE. If she doesn't have any bleeding, she is fine. Yes, I'm aware of her age. But she has no symptoms! If she's watching her symptoms, she is fine. Would you at least trust that the woman has a brain in her head and knows when she needs medical care?

You want to know why it takes 4hrs, Erica? Because when you go to a doctor's office they have two things in their head. 1) I gotta treat this sucker, make a decision, and get their butt out of my office in 15 minutes (and someone really expects to get good care that way?!) and 2) If they don't do the treatment I want, I ultimately make less money. Because no matter what treatment you choose, you're going to end up in that doctor's office more and he's making more cash. And don't even push me on this one because years before ITP I spent several years in oncologists offices. The one time I told a doctor we'd take our money elsewhere unless he did it our way, he threw his hands in the air and said, "Fine. You can have it your damn way!" So don't tell me it isn't about the money. And after two years of refusing to do any drugs that they kept pushing, they were ANGRY. I mean ANGRY. Trust me, it wasn't because they cared about my MIL. Drugs = money. And anyone who doesn't believe that is either a liar or stupid.

When a person sees a homeopath they literally treat every INCH of that person. They want to know that person up, down, and inside out. Because everything effects our health. Not just ITP. You can't do that in 15 minutes. It takes HOURS. And ITP doesn't show up alone. Something in the body is not functioning long before that happens. And since constitutional h-pathy doesn't seek to treat one symptom, but the whole body, the practitioner MUST know every inch of the person. Physically, emotionally, etc. That initial appt. is a combination of seeing a medical doctor and a shrink in the same appt. And when they're done, they study. Remedies, person's symptoms, etc. And when all is said and done and they've studied that case they come up with the remedy that person needs to heal their WHOLE body, not just ITP. But it will HEAL ITP - because it heals the entire body. Without damaging it the way drugs do. There are follow-up appts, just like with an MD.

You know how much we paid for h-pathy? In the hundreds. I won't give you the exact amount but I can tell you it was THOUSANDS less then the $30,000 we paid to medical doctors that not only did nothing, but gave our boy hep. B with their crap treatments. Oh yes, financially and health wise, I WISH we'd known about h-pathy before the world of drug treatments (because that 30K out of pocket was WITH insurance). I will forever be grateful to my Indian friend for loving us enough to talk to us. Oh how I WISH we'd known! You all would not do well living in India where h-pathy is standard in hospitals! It's the ONLY treatment the queen of England uses. Her homeopath travels with her wherever she goes. Given her age, she's done quite well. Probably due to the lack of toxic drugs in her body over the years!

So before you guys go blowing your mouths off maybe you better start reading and studying. Leave this person alone. I see no decision that she has made that is detrimental to her health. The difference is, I actually think people have brains on their shoulders and if they need a doctor not only are they probably smart enough to go, but their homeopathic practitioner would advise it. I have seen homeopaths send patients to ER b/c of kids having appendicitis that they recognized instantly from the symptoms but the parents did not. Pains that indicated something dangerous was going on in the person's body, etc. and they needed immediate medical attention. THEY AREN'T STUPID. They are trained just like other practitioners. Most do 4 solid years of schooling. Why NOT try something non-toxic and inexpensive first? If she's not happy, she can always go the medical route. It will always be there. Homeopathy works MUCH faster when it doesn't have to clean the body out of previous drugs. It'll still work if someone has done them, but it takes longer and requires the body to work harder.

So if this lady is willing, able, capable, and not in danger, to use a natural method of treatment before giving up and going the medical route, then LEAVE HER ALONE. We still got CBC's throughout treatment (and sometimes still do). I'm sure she's smart enough to figure that out. And since she's being treated by an h-path, you figure that homeopath might also want to know what her counts are doing?! I know ours did. Good grief. You guys assume everyone are idiots.

At least learn something before you start haranging people for their decisions........because at this point you're contrary not because you know anything truthful about h-pathy but because it's not the standard medical treatment that you all think is the only way to go. And it really doesn't matter to you whether someone's count is 4 or 40, the posts are always the same.

Enough said.

Patti (hi other patti!)

Enough said is right. Welcome to the board Alice. Please keep in mind that those of us who have been here a while assume that when people post on a message board they are looking for opinions and advice. We certainly know where you stand. Thanks for the insight.

Well then...hello stranger! I have missed you--but some others, maybe not so much, ha ha!
Thanks for always speaking your mind.

Sandi wrote:

april wrote:
So to me, the better question would be "Why wouldn't you choose a natural approach, first?"
If it doesn't work for you, the other will still be waiting there for you.April

Because her counts are 4k.

Yes, Sandi, her counts were 4k on diagnosis, and only went up to 11k with both Prednisone and days of IVIG. And now they're down to 3k. She is still on the Pred, which is having a big impact on her and causing her to be emotional and with more anxiety than she needs (I'm sure many of you have experienced that fine side effect of Prednisone!). So, obviously, the two most common first-line treatments are having no effect for her. Does it make sense to just keep upping the doses on these? Sure, there's WinRho or Dex to be tried. But, after that you're getting into basically three choices: splenectomy, Rituxan or one of the TPO's (Promacta or N-plate). All have a significant expense, none are guaranteed, and all have the potential of causing serious, even deadly, side effects. Not to mention that the long-term side effects are not entirely known, due to their relative newness.

I know that you and the others posting here are well aware that many times, nothing seems to work, anyway, despite seeing a hematologist. Although I am sure she can speak for herself, Patti simply said she was going to wait a bit before rescheduling with the new doctor-not that she will never darken a doctor's doorway again! She isn't having any serious symptoms, she's not engaging in any risky behavior, so, just like you did when you were at 3k, she'll get on with her life.
She's making new choices in her life, positive changes. She's already given the hematologist's treatments a try, and she's simply like to try something that is not so harsh, and may actualy work! After all, it's worked for many others.

tamar wrote: Enough said is right. Welcome to the board Alice. Please keep in mind that those of us who have been here a while assume that when people post on a message board they are looking for opinions and advice. We certainly know where you stand. Thanks for the insight.

Been around for several years Tamar. Just did not want to post for a long time but always checking on a few that mattered to me.

alicein wrote:

tamar wrote: Enough said is right. Welcome to the board Alice. Please keep in mind that those of us who have been here a while assume that when people post on a message board they are looking for opinions and advice. We certainly know where you stand. Thanks for the insight.

Been around for several years Tamar. Just did not want to post for a long time but always checking on a few that mattered to me.

My mistake, I saw your post count and assumed you were new to the board. Welcome back, then!

Time to draw the line.

The eternal struggle between medical and natural (whatever that means) will never end. That's fine, people can make their own decisions. What cannot be tolerated is rudeness and swearing. There are ways to get your point across and still be civilized. If you cannot manage that, then your words are not welcome or justified.

This is the problem that I have with this whole discussion. We have a homeopath here, who has not even seen the patient, who is telling her over the internet that it is fine to wait however long it will take to receive homeopathic treatment. I clearly see a problem with liability there. Who will be responsible if it turns out badly? There are three things that strike me as important: 1) she is newly diagnosed, 2) she is over 60, and 3) her counts are below 5. Those three things are red flags to me that she should at least be examined by a doctor and the encouragement to NOT do that is dangerous and irresponsible. She can then decide whether or not to treat, but at least she will have had medical advice from someone who is familiar with ITP, since it seems that the new homeopath is not.

No one is telling her not to see a homeopath. We would support that decision if she were educated enough about ITP to make that decision. Just a few days ago she thought her life was over.

Patti, I am sorry that you got caught up in this storm....it does not happen often. We all want the same outcome, and I truly hope you get there. Please stay...this too shall pass. WE DO CARE ABOUT YOU.

As far as I'm concerned, money is not even an issue. Health is priceless.

And yes, April, I did go about my life at 3k, but I was also under the care of my doctor at the time, in the middle of treatments, and also had time under my belt so I knew how my body would react. My initial reassurance was given to help calm her. I did not intend for it to be construed that low counts are no big deal. I believe I made that clear a few times as well. When I sad those things, she was seeing a doctor. Things have changed. I'm sorry but exams are important. I once had a mouthful of petechiae and never knew it. My hemo caught it and it turned out to be an important symptom.

I suspect there are two Patti's around here!

Wow, this is an awesome and lively conversation and I appreciate all of it. I think the decisions we make around our health, especially when what we are dealing with is somewhat life threatening are very difficult and I support any path that anyone chooses. I hear each of you as beacons of caring and that makes a difference. After reading and researching, reading what others are or have gone through with various treatments, knowing how sensitive my body is to "drugs", and talking with people who have had success with homeopathy, I know this is the right path for me. I am looking for a doctor who can support this path so I have someone from the medical world in my court as well. I do not have any bleeding and I work from home so I have quite a bit of control of my environment. I am not planning to do any traveling or corporate training until I get my counts up in the 50's, so I feel that I am fairly safe and I am willing to take the risk. Again, thank you all for your support and I will keep you posted about my journey. I am an extremely intentional person and I have been involved in causing unpredictable results most of my life. This is just my next challenge!

Sandi wrote: Time to draw the line.


This is the problem that I have with this whole discussion. We have a homeopath here, who has not even seen the patient, who is telling her over the internet that it is fine to wait however long it will take to receive homeopathic treatment. I clearly see a problem with liability there. Who will be responsible if it turns out badly? There are three things that strike me as important: 1) she is newly diagnosed, 2) she is over 60, and 3) her counts are below 5. Those three things are red flags to me that she should at least be examined by a doctor and the encouragement to NOT do that is dangerous and irresponsible. She can then decide whether or not to treat, but at least she will have had medical advice from someone who is familiar with ITP, since it seems that the new homeopath is not.

First off, I do not see the homeopath telling anyone what to do over the internet. Patti was ALREADY seeing a doctor and only chose to forgo a second opinion. I do not see suggesting it's okay to forgo a second opinion if she's going to go another route first as having ANY liability. Clearly, Patti has already and is already under a doctor's care given the treatments she's already had since no one can get IVIG and prednisone without a doctor. No one is required to get a second opinion and deciding to postpone getting one is not a crime. Nor is giving the opinion that one thinks it's okay to wait to get a second opinion a crime. And nowhere did Patti say she wouldn't continue to see her current MD. So you are filling in a whole lot of blanks here without having clarity of the information at hand. If you want to ask Patti if she's going to continue to see her current MD that is a fair question. But it's wrong to suggest someone else is liable or doing something wrong b/c they personally think a second opinion can wait given her recent decision. The statement was made based on the patients recent decision, not trying to convince to do some other form of treatment.

Who's responsible? The patient. And in the case of a child, the parent. Because we are all responsible for our own health. The decisions the patient makes as an adult about what treatments they choose are theirs, and theirs alone. Is someone going to sue their doctor if their rituxin or spleenectomy doesn't work? As I stated before, any h-path worth their salt knows when it's time to suggest a person seek medical care if they aren't already. And any person with half a brain knows when something isn't quite right and should seek help. The issue is not that she wanted to go a different route. The issue is the attack that happened when she stated so. Instead of leaving it at that there are posts that are anything but supportive. Oh wait. First it's the nasty stuff, and then it's "keep us posted." Like somehow that's support. That's the issue here - and it has always been the issue here.

And by God's grace I won't have blood spurting out my eyes again and feel the strong pull to post again.