Girlfriend diagnosed with ITP Also Has H.Pillory

Hi all,

@ November my girlfriend had a routine blood check for some in-between periods bleeding (small amount). The blood count showed low PLT count of around 130K~

The following test just a short time (Days) later showed 117K~, The doctor (not hema, just regular family doctor) proposed to stop the Birth control pills to see if those were the trigger. Reduced PLT count started around the same time my GF switched her birth control pills. (BTW she is 27 Years old)

We were instructed to wait 2 months and do the test again after 2 months without the pills.
So we did, at the time I didn't know anything about Platelets or ITP. Life was good.
The test showed even lower PLT count, 83K~.

We scheduled a meeting with a Hematologist, and started performing blood tests, ultra-sound of the spleen, the H.Pillory breath test.

H.Pillory turned out positive, and treatment was started. Just before we started the H.Pillory treatment another CBC was performed and platelets were again at 130K.

Since then it dropped to around 59K, my GF is still performing the H.Pillory treatment, but the antibiotics part is over, she has to take OMEPRADEX one more month to protect the Stomach.

Some more interesting factors that might produce her ITP are :
She is a dietitian student, almost finished her studying, she now practices at a hospital and got a few shots before she started. Flu, and some more I don't know/remember.

So far she didn't have any side-effects of the low platelets, which is as I understand expected because above 50K patelets is fine for everyday life. Yesterday, we noticed some blue spots on her legs just above the feet. This was rather worrisome to me because just 2 days her count was 59K.

Now she has marks? it probably means a rather major drop in count. I barely slept at night, kept thinking about what we should do, and what happens if something happens while she is sleeping and can't notice. We do live close to a hospital and I have a car and ambulances are good here. But still this sucks.

We actually got engaged just a while ago, and are preparing the wedding. It makes me so sad that this ITP thing came now. We have known each other since the age of 17, and have been together around 7 years (neto), It took me time to be ready for marriage. Deep inside I am still a kid.
I play computer games, I love cars, I like playing with laser guns, and at the same time I am a programmer and a supporting partner. So it took me time to propose, and I feel like shit that on this account my girlfriend now had this bad PLT timing with the marriage she has been waiting for for so long.

I can barley focus at work, even though they are being very understanding, especially my boss.
Giving me the time I need to go with her to the doctor's and stuff.

Things I intend to do:

• Hope that flu shorts / H.Pillory are the cause and will pass and ITP will be gone
• Investigate allergies, we have a cat and some dust from construction near the house.
• If all these fail. Start different diets, especially "dairy/meat"less and maybe no gluten

I try to cheer her as much as I can, but I fear so much from the steroids and other treatments with all the side-effects, not to mention what can happen with extremely low PLT count.

I guess the reason I am posting here is for some mental support, and to get this out of my own system. Even as I type here my eyes fill with tears.

To sign off, anyone who needs a comforting 2 hours should listen to Shpongle. Specifically, this show : youtu.be/Wp2rW-rNgC0
It requires proper headphones, and a cup of tea.

Also, I have been reading here on PDSA.org lots of stories and people's posts.
My heart goes out to all of you who have ITP and are dealing with this condition.

I have said to myself many times that with how complex the human body is, it's amazing it's still working. But it's a fact that we have been here for so many thousands of years, something must be right.

I hope for everyone here the best possible life. Even though I myself am not dealing with ITP, I have had my share of odd problems.

To the founders, maintainers, posters of PDSA - Thank you, you are all awesome.

Des:

It's great that your girlfriend has you for so much support. I'm sure it helps a lot.

Please try not to worry so much. ITP is not a death sentence, even with low counts. Many of us have been below 5k and still gone about our normal lives. Low counts are usually not a medical emergency unless there is obvious bleeding. It would be very, very rare for something to happen while she is sleeping. Her counts have been very safe so far. Believe it or not, but some people do not have any symptoms with counts even under 30k. Even if she does get to a point where she'd need to treat, it's not always pleasant, but you get through it and life goes on.

I don't know what the blue on her feet would be. ITP symptoms are usually red pin prick dots called petechiae. I suppose bruising could be blue, but you didn't describe them as bruises.

ITP can invade your life and alter it in some ways, but it does not have to be devastating or stop all of your goals and plans. Read as much as you can and you will see that most are happy, well-adjusted and busy people. It can take time to adjust to the diagnosis, and in time, you will. There is always a chance that this could be temporary and her counts will rise on their own in time. Or,it could just be that she has lower than normal platelets and this is the way her body is. In that case, she would just need to monitor occasionally and nothing else in life would really need to change.

ITP can be a challenge for some people, but for others, it's just a small blip in life. Either way, it's going to be okay.

PS - treating H. Pylori rarely resolves ITP. I've seen a handful of people get lucky over the years, but it's not something you'd want to pin all of your hopes on.

I agree with Sandi.

My husband was diagnosed with ITP five years ago. When you first get the diagnosis it feels life changing and it is to a degree. It's scary and it's rare. It's also not something that you can see unless you have the Petechiae, which my husband never has even when he was as low as 9,000.

It is a very frustrating disease. As our hematologist told us yesterday, it's one of the most frustrating diseases he treats for everyone, the patient, the family and the Drs. It is so different for everyone and there is no guaranteed fix.

In some ways I think it's tougher on the care givers because we're not living with it so we don't know what it feels like but it's never off our minds, ever. I think about it constantly wondering if my husband is okay when I'm not with him. Whereas he goes on with daily life and doesn't really think about it too much unless he's going through a blip. We went for our annual physicals one year and our family Dr. told me that my husband was dealing with ITP so she didn't mention his high cholesterol to him because she didn't want to add stress to him. So I asked him on the way out "are you stressed about your ITP". His answer "What's ITP?" Yup, he was so stressed out about it he couldn't recall the name of it.

Life doesn't stop because of ITP. Life just changes slightly. You have to be more cognescent of illness - or at least we do. If my husband gets any sort of bug his platelets drop so we're more careful. We don't go out to mass public areas like the movies during flu season because we don't want to risk him picking up something from the stranger sitting beside him. When we travel he carries Prednisone just in case his platelets drop while we're away or he'll do a quick round before we go to give him a bump up before flying.

We still lead a normal life. We go to the gym, we go hiking, we travel a few times a year. We live life. Just a bit more carefully.

I empathize with you - I know what you're going through. It gets better. Once you're used to the ITP it gets better and easier. It's always there but it's not as life altering as it is when you're first diagnosed.

On that note - my daughter just got engaged after dating the guy for 8 years. My son has been dating his girlfriend for 6 years and they are not yet engaged. It's pretty common these days, I guess.

One good thing about ITP is: even though you can't really see it, you can monitor is very easily. CBC's are instant these days and you get quick answers. Not all illnesses are that simple to check.

Thank you guys for all the replies, it's really encouraging to read what you have written.

@Sandi, I'm happy to hear about your daughter - That's awesome. I used to think getting married is a mistake, but I grew up, and after getting Cataracts myself, and getting so much aid from my girlfriend, I knew I want her with me forever. (yes I got cataracts at age 21~, performed surgury on both eyes at 24~, Now I use multi-focal glasses and am very satisfied.)

Regarding CBCs, It's not very comfortable, you have to go to the clinic, we only have one car, and results only come at the end of the day. The tests must be performed till 10:00 AM, So it means getting up very early once a week at the moment. I guess after you have kids you are awake anyway.. hehe.

Regarding the bruises on her leg, it's something that looks like this :
wlsvitagarten.com/wp-content/uploads/2010/01/bruise.jpg

But, a lot smaller, and more blue. It somewhere were the sock is pressing hard, or maybe her boot-like shoe is pressing against her leg when she walks. She is rather active so lots of walking.

From your experience, for those who have got their platelets up after dealing with H.Pillory, how soon after finishing the antibiotics was there a change?

2Jacks, I understand what you are saying. We will try doing it, and I think even from the start we are successful, while I did stay at home and cry for a whole day after we got 69K PLT and I entered google for the first time to learn what a platelet is, I was sure she has leukemia or meyloma or some cancer... Obviously it was my own fault for googeling and reading the worst stuff without proper education. After that though, we both kept going to work, enjoying with friends, she is going to her internship, everything is moving on - But always with ITP in mind. (as you said.)

Btw it's not the first time I scare myself to death of google. I was playing some computer game 1 year ago, and while playing I felt something itching my back, tried rubbing it, found a lipoma. I didn't know it was lipoma, I didn't know what lipoma is. I felt a lump on my back, not very big, not very small. Instantly googled, and becuase of some language barrier, I wrote in Hebrew lipoma, google corrected me to limphoma... and.... I was sure I'm going to die. (lol)

I just want her to be happy, I'm really worried about getting pregnant. In one year or so we will want to have a baby, when she finishes her studying, and I'm afraid about this ITP. I know pregnancy can cause temporary ITP, but to go into one with ITP already existing, is that wise?

Girlfriend was @ Hematologist today, was asked to perform a Bone Marrow Biopsy.

Should we be scared?
Her platelets are enlarged, and she has a slightly elevated WBC, but it's always been slightly high for her.

You should try and take a breath. I know it's hard but she's at the best place she can be. Her Hem will have some answers for you shortly. The BMB is not comfortable or easy. But it's not the end of the world either (my husband has had two of them). And even if it's not just ITP it's not the end of the world either. There are so many good treatments out there now it's incredible.

Hoping things go well for both of you today.

Des:

Some doctors perform a BMB and it's a common thing with ITP. Most of us have had one. If I had to do it over again, I would have refused. I was newly diagnosed and didn't know any better though. It does not confirm ITP, but can rule out other things. It is also not necessary according to protocol, but many doctors do it out of habit. They think it will prove that platelet production is good, but that is not true. Recent research has shown that the BMB does not prove normal platelet production and that info has not been passed down to many hemos. Most people with ITP have a production problem as well as destruction.

It sounds horrible, but honestly, it was only a split second of pain. They give two numbing shots in the hip/butt area and then you can't feel much. You can feel the actual extraction, but before you can say 'ouch', it's over. It took about 20 minutes in my doctors office and I was out of there with a band-aid on my butt. The area is sore for a few days, but you can still work and do normal activities. It's hard waiting for the results, but I can assure you that most are told "results are normal and platelet production is fine".

Of the people that I have seen respond to H. Pylori treatment, they saw a rise in counts within a few weeks of beginning treatment.

ITP will be in the forefront of your minds for a while, but believe me, it will move to the back at one point.

Stop googling! There are accurate, credible articles and there are articles that are so wrong and out there they can be very misleading. Here is a good video to watch. The presenter is one of the top ITP specialists in the world. I hope it helps.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Enlarged platelet are normal with ITP. Large platelets are new (reticulated) platelets. As they get older, they shrink and die. Since platelets do not last long in ITP patients, most of the ones they have are bigger.

Sandi & 2Jacks,

Thank you very much for your time, expertise and help.
Through myself, your help and energy flows to my girlfriend (fiance).

She was very depressed today, but nothing a set of flowers and a small doll couldn't fix

If there are no high risks of having a BMB, I don't think we need to avoid it. After all, if there is a chance something is wrong - I prefer to find it.

The link for the presentation you sent is awesome. It's really technical, and at the same time easy to understand. It will really give me a lot of base knowledge when dealing with the doctors.

I already know that our Hematologist want to treat with predinzone for PLT<30K,
But as I see it, especially after viewing the presentation, I wouldn't want any treatment above 15K, providing the symptoms are not horrible. Who knows what the prednizone will do?

Interesting about Nplate and eltrombopag, Reading in the producers website made me want to stay away from these drugs. But the presentation made them sound attractive...

@2Jacks,
Your post is very reassuring, but I guess I'm not so easily reassured - I'll try repeating your words to myself and GF, good spirit is definitely better then sadness.

My boss @ work is amazingly understanding with what we are going through.
He makes sure I can attend all the doctor appointments. Specifically today, I was not present with her because I didn't think there is going to happen anything. Suddenly he popped the BMB question.

That's what we do here! Offer information, help and hope to those who need it. I once read an article by a top ITP Specialist that if a person had to get a hematological disorder, ITP was the best one to have. I wish I could find it. Of course none of us wanted it or welcomed it, but it's here so you just deal with it. It does teach you that nothing is as important as your health and suddenly the small stuff doesn't matter much anymore. It teaches you to appreciate those you love even more, and it teaches you to want to adopt a healthier lifestyle.

You are sounding more positive as time goes on. Good for you! ITP is usually something that can be managed. As I said, it's not always pleasant, but you just take a deep breath and take the plunge. Many people achieve remissions and if and when that time comes, ITP will be a bump in the road in your rear view window.

Very well said Sandi!

Your fiancé is lucky to have you there for her. You say you are a kid at heart but you are acting like a mature person in a committed relationship. If you have not already read the original post titled Excellent Advice you should...it is very helpful.

I have had 2 bone marrow biopsies. It is not too bad, quick.....and my husband treated me to a nice lunch out after. Something to look forward to is helpful.

About the blue spots, I get bruises like that when my platelets are even a little low from watches, jewelry, or clothes too tight. Maybe her shoes or boots are pressing too hard?

It is great you have an understanding boss, that helps a lot!

Dru

Greetings & Salutations

Thanks for your replies - It's awesome to have someone to talk too, especially someone who knows so much. Not much has changed, Iv'e noticed some red spots on her back yesterday while she was in the shower (I was not peaking!!! I promise, I was keeping her company!), I didn't tell her about them because they are not serious and I can see they are probably from the pressure the Brassiere is applying. ( Hope she doesn't read this - She want to start reading the forum )

So yesterday she showed me 2 more blue spots on her legs, they are faint purple/blue bruises under the skin. Like when you get hit hard without scratches, So I remembered that she has been getting these for about 1.5 years now. She was always sure that she gets them while working, she waiters tables at a restaurant near home, (part time job to finance her University studies), So I was always telling her, honey you need to be more careful, but she could never remember really getting hit by the tables.
So what I am actually saying is that I think she has been having ITP for almost 1.5 Years now. And we are just noticing it. Obviously because of the blood test which first showed 117K and got us to start investigating.

Thursday is her next count, we shell see how it goes. It's also a meeting with the Hema, not sure why one is needed, we have a scheduled BMB for 2.4.13 (That's DD/MM/YY)

I am reading a lot on the different diets which are mentioned here in the forums, and homeopathy.
Yesterday I mentioned them to her, I think she should try them after we get the BMB results and rule out the heavy stuff. If we really still stick with the ITP diagnosis, I would rather try everything and avoid prednisone.

I was also worrying about this : We will want to have a baby, I guess in one year we shall put one in the Oven.. I was wondering if it's wise to have the first prednisone experience while pregnant.
Maybe she should try some prednisone before to see the side-effects before hand?

Off to playing some computer games now...
Cheers to all of you and Good health.

PS. On my first post here on PDSA.org I posted a youtube clip.
I really urge you all to watch it, Even if it starts odd for you, the style changes throughout the show, they are very diverse. They (shpongle) keep me calm.

Desafina,

If you are considering homeopathy as a treatment option (which I highly recommend!), it's actually wise to stay away from prednisone first. People who have had prednisone have much more for their body to work through and it can take quite a bit longer for platelets to come up after taking it. Our son only used it for 4 days and we had to antidote the prednisone several times before we could get it out of his body cells. I know several others who used it for just months and have really had to work at clearing it out of their bodies in order for their platelets to come up. So my suggestion would be to try the non-toxic treatment first. You can always use prednisone if you are unhappy with h-pathy treatment.

As to pregnancy, again, same thing. If you could bring her platelets up without giving her a drug that will affect her cells and thus any future pregnancy, I would do so. We are the sum total of everything we put into our bodies, it's always best to start pregnancy with the healthiest body (read, non-toxic, no drugs) as you can.

If you need help finding someone overseas I'm sure someone can give you some direction that way.

patti

I wouldn't worry much about slight blue bruises. My counts are normal and I get those all the time. What you want to worry about are large, black spontaneous bruises. You'll know if you see one.

I wouldn't try Prednisone just to see what the side effects are. Only use it if really needed. An OB/GYN who is familiar with ITP will usually treat a woman between 30k and 50k, so if she is over that, she may not have to treat at all.

Patti,

I think it would be foolish not to try something that has no bad side effects... Even if it is not promised it will work.

Question : providing the count is above 50k, is it safe to drink a glass of wine with food?

We have hollodays here now, and my girlfriend was insisting on some wine in the spirit of the holiday. ..

So... she already drank some. But at least for the future, is it ok like once a month to drink a beer or some red wine?

Desafina,
If you'd like to pursue homeopathy, here is a homeopath in Israel that you may want to contact for treatment or a referral. She has been in practice for over 20 years, is also a teacher. I don't know her personally, but know of her and have only heard good things. She is also an MD.


Homeopath in Israel
www.sensations.co.il/index.php?option=com_content&view=article&id=95%3A2009-06-27-15-00-56&catid=47&Itemid=93&lang=en

Rina Markovits
Dr Rina Markovits, MD, RCHom

Patti (alicein) above, gave you some good advice as well. Prednisone suppresses the immune system, which is never a good thing in the long run (for certain emergencies and short term may be necessary). It definitely slows the healing process down and can become very discouraging when other things get better but the platelets remain low.

Also, you won't be sure until she's pregnant, what her body will do. Some women actually find their counts go up during that time. She can still have a normal, vaginal birth with moderate level platelets (30k to 50k). Higher counts are needed if she chooses an epidural or C-section. Part of your preparation for having a baby should include educating yourselves about natural birth, using a midwife or doula, and how to avoid ending up with an emergency C-section. (A book called "Silent Knife" is a must-read for all parents-to-be, and can really help you to see how many seemingly unconnected procedures can lead to a C-section, and why you might want to avoid a C-section in the first place. While not technically a birthing book, another important book for me was Ashley Montague's book, "Touching", which through research and story telling, he brings alive the importance of touch, which begins with the baby traveling through the birth canal, and the problems that ensue when that normal process doesn't happen.). There are many things you can do or avoid, in order to have a completely natural, relatively pain-free birth. But, it's something to find out about ahead of time. I would suggest looking into underwater birth ( I believe that's fairly common in Israel. ). I've given birth 5 times to 6 children (last were twins), and 4 of them were underwater births. Highly recommended by me!!
We also had all of ours at home, the last four unattended, just my husband and I, a very beautiful experience! While that may not be allowed because of her ITP, there are many facilities that do offer midwives and water birthing.

Best wishes to you both,
April

Desafina,
I don't think an occasional drink will affect her platelets.
Many on this site seem to have a glass of wine or cocktail on occasion with no change in counts.

That said, I always say "everything in moderation". I don't care for very restrictive diets or limiting whole food groups, unless the person shows an obvious adverse reaction to it. I'd advise her to not drink heavily at one time. It's more damaging to the liver to binge drink, than it is to have a daily glass of wine or beer. She should also avoid drinking on an empty stomach and should never take any Acetaminophen (Tylenol) or any OTC drug that contains it, within 24 hours of drinking. Acetaminophen overdose is the #1 cause for liver transplants in the US--it's toxic effects are greatly increased by alcohol or taking on an empty stomach.

So, it's fine to enjoy the holidays, but just with some relatively minor adjustments.

April

april wrote: I've given birth 5 times to 6 children (last were twins), and 4 of them were underwater births. Highly recommended by me!!
We also had all of ours at home, the last four unattended, just my husband and I, a very beautiful experience!


Best wishes to you both,
April

J-E-A-L-O-U-S. :laugh: Always wanted a home birth (not necessarily unattended. )

April, this ia super useful.
When did I mention we are from Israel? I don't remember hehe.
The MD you mentioned has her practice in Haifa which is 1 hour drive. Not too bad but a bit far.

If she is as experienced as you say and described in the link, maybe it is worth it.

Thanks!!!

Your profile that you put on this website says you are from Israel.
Erica

Yes, Erica's correct--it's in your profile. I normally wouldn't check it, except Patti had mentioned you were overseas.

If she is only an hour away, I would totally make that effort. It won't be like a normal doctors appointment where you see her for 15 or 20 minutes. Of course, I don't want to speak for her, but most homeopath's initial appointments are 2-3 hours long. After that, you can probably do much of the follow up appointments by phone. Follow ups are generally a month or two apart and only necessary until she is stable and doing well. So, it's not a significant time commitment, especially if you look at the long view.

April

Des,

All you can do at the end off the day is be there for her, come what may. My girlfriend (also on this forum as Rachaely) has been suffering with ITP on and off for the last 3+ years, she's tried several of the meds, with varying degrees of short term success, and we've gone through all the ups and downs together. She has gotten some great support for this website and others like it.

Try to keep life as regular as possible. The more you can minimise the impact on your day to day lives the better.

Good luck.

Thanks for the words of comfort.
So far everythink is ok, her count is always around 80k.
We have performed a bone marrow biopsy on monday, now waiting for resulfs which may take up to a month!!!!!
But life goes on and so far no harm.

I am there for her always, and if anything, this ITP has only brought us closer.

Results came in, Bone marrow didn't reveal anything.
I.E. Results are Ok.

This is good because we were very stressed, So now we can focus on ITP,
Her last count was 72K, it seems her number are always around that area.

Wel'l start trying different diets, maybe something is bugging her body.

This is good news, her counts are stable and bone marrow test negative. Many people have tried different diets, gluten free etc. A healthy diet certainly can't hurt!

I read somewhere, maybe in the forum, maybe elsewhere, about allergies.
Which might trigger an automimmune response.
I wanted my fiance to go have an allergy test - But she doesn't believe that it might be it, and the Doctor (both Family doctor and Hematologist) said allergies have nothing to do with ITP.
So they won't warrant the test.

I would be glad if anyone refers me to a good medical document that says otherwise, or even just testimonials.

Thanks!