Help

I was recently told I have ITP. When I went in to my family Dr. my platelets were at 3. From there I was sent to a hospital about an hour away. Of course they put me in the hospital, and that is where I was for the week. They started me on high dose steriods which I did not respond to. Next they tried the IVIG treatments and the highest my count went to was 9. Now I am on my last week of rituxin. And still nothing my count is at 1. I am to go to our UW hospital on Tues. for a consult with the Surg. and Hemo. there. They are thinking my spleen is next since I have not reacted to anything. Is there anyone out there that did not react to anything? I am extremely scared!!!!! My Hemo in Appleton said he has never had a case like mine. Which is why I am now going to the UW hospital. He has been consulting with them there. Any input would be helpful. THANKS

Lorrie - it's still a bit early for a Rituxan response. That can take 4 to 12 weeks after the first infusion. Don't give up yet.

There have been a few people who have not had responses to those meds. There are still other things to try; Imuran, CellCept, N-Plate, Promacta, Win-Rho.

Thanks Sandi, I just get really sad, upset, mad etc.. when nothing seems to work. Love this website though. Everyone is so helpful and understanding.

Dear Lorrie,

I think there are quite a few people who have had no response to those treatments, or the side effects aren't worth the brief improvement. My daughter did not respond to WinRho or IVIG (other than going into anaphylactic shock with each of them--not exactly the response we were looking for!). Neither of us planned on going the route of Prednisone or a spleenectomy, so we never even considered them. I was able to find a homeopathic remedy for her that worked very quickly (she was nearly always < 10k, and her counts went from 11k to 411k in 4 days after the remedy), and she has been good to go for 6 years, now. Since then, I've treated a number of people with ITP, who've had similar results. (I am a homeopath myself)

If you're interested in at least talking to one, I know of two very good ones in Madison, WI (I think you're located near there.) Or if too far, perhaps they could refer you to someone nearer. Or, if no one's close, you could do a phone consult with someone anywhere. Here's their contact info:

David A. Johnson PA, CCH, RSHom(NA)
Classical Homeopathy, LLC
406 N Pinckney St
Madison WI 53703-1410
USA 608-260-8000 (W)
www.homeopathy2health.com

Paul K. Branch, MD & HMC
Ibis Clinic for
Holistic Medicine
2122 Luann Lane, Suite 201
Madison, WI 53713
(866) 477-1169
www.homeopathicdoc.com

There is definitely some hope, so don't get too discouraged!

April

can u tell me what treatment of homeopathy works for ITP.As I live in Ireland and I could then explain to homeopath .

Dear trigger,

In Homeopathy, ONE, specific remedy is chosen for the individual person's total state. The physical symptoms of ITP are looked at, of course, but the person's mental, emotional and general symptoms (i.e. sleep, appetite and food desires and aversions, warm or cold blooded, what makes the symptoms better or worse, etc.).

The homeopath attempts to understand who this person is? What makes them unique from all the other patients who have the same disease? How are YOU experiencing this disease? No one else but you (or an observant parent or spouse), can describe this.

Of the patients I've treated so far with homeopathy, who just happen to also have ITP, only a few of them have needed the same remedy, as they had similar characteristics and ways of experiencing their disease.

I will check and see if I can find any good homeopaths in Ireland. Off the top of my head, I don't know of any. But, many homeopaths are using Skype these days, so it doesn't necessarily limit you. But, I think if possible, find one to see you in person.

I'm a bit unclear from your post if you already have a homeopath or not? It also seems there's a bit of misunderstanding as to what homeopathy is. Many confuse it with using herbs,vitamins and supplements, or various cleanses, juices or diets. None of these are homeopathy. (They may or may not be beneficial, may or may not be necessary, but they are NOT homeopathy, even if they are billed as such!)

Homeopathy is an over 200-year-old system of medicine that stands on it's own merit.
Classical homeopathy has certain principles that are followed. You can read a lot more on it from a thread on the Original forum, under Natural Treatments, with the name of "Homeopathic Doctor" discuss.pdsa.org/topic.asp?TOPIC_ID=23985
I shared my daughter's experience with ITP on there, and also answered a number of questions about homeopathy in general.

Also, I think the doctor that I posted above, Dr. Paul Branch, does a good job of explaining about it. You might want to read that. There's a homeopathic forum,
www.hpathy.com that also has a lot of information on homeopathy. It is free.

My personal experience with homeopathy has never let me down, and it has profoundly changed my life, as well as those who I've treated. I wish you the same.
April

Hi Lorrie,
It sounds like a second opinion is a good idea at this point. Low platelets that don't respond to standard treatments are sometimes caused by something other than ITP--and if that is the case in your situation, it would not help to have your spleen removed. There is a podcast where 3 of the ITP expert hematologists discuss this--I'll see if I can find a link.

In the meantime, are you having bleeding symptoms? Was your ITP diagnosed because of bleeding or was it discovered when you were being treated for something else?

Okay, Lorrie, hopefully you have access to ITunes. If so, go to the ITunes store, put ITPEducation.com in the search, and you should find a bunch of free podcasts. The one that talks about mis-diagnosed ITP is called Diagnosis of ITP, Part 3 of 3, dated 9/3/08.

I was interested too, so I found it on iTunes, downloaded it, but it wouldn't play.

I've just tried it and it works fine on my itunes

try it again, Sandi. The other way to get it is to go out to ITPEducation.com and register, then you can see all the podcasts right on their website.

Maybe time to update my iTunes. I have a really old version. The last update screwed up my iPod though.

Thanks!