Looking for an ITP doctor

I have been dealing with ITP on my own for a few years and I need to find a hematologist that I can trust. I have a general mistrust of doctors and dont know how to get a referral to someone who really cares. I went to one referred by my GP who was an Oncologist/hematologist. Didnt feel he knew much about ITP not created by chemo. I really want someone who is specialized in ITP and not cancer. I live in the san diego area and have already sent a request for a referral to PDSA but havent' heard back from them. Just wondering if someone can here can help. thanksB)

Hi. ITP specialists are hard to find and I'm sorry but I don't have a referral for you. I did go to one once in Pittsburgh and ended up spending the entire day traveling and waiting, only to be told that I should continue with Prednisone, which was what my local hemo was doing anyway. I didn't go back; wasn't worth it. I came away very disappointed. They took 16 vials of blood for a bunch of tests and I learned nothing new.

I can tell you that specialists are great if someone has refractory ITP that cannot be managed. In those cases, sometimes it takes a certain combination of meds to manage it that most doctors do not typically use, but that is even rare these days with the TPO's.

In my opinion, a regular hemo is just as good if: he is aware of all of the current options and discusses them with the patient; he does not push any one certain treatment on the patient and allows the person to make an informed choice; he is successful in helping the patient to manage ITP and maintain quality of life; he allows a doctor-patient relationship that is not one-sided; he does not panic at low numbers and allows the patient to remain calm.

It is possible to find a hemo who meets the above criteria. If they don't, then by all means find someone else who will. I wasn't too crazy about my hemo at first; I felt he blew me off most of the time. In time though, he began to respect my opinions when he realized that I knew just as much, if not more, than he did. We get along great now and I wouldn't trade him for anything.

The thing about ITP is that the list of known treatments is all that is available. If you have a doctor who knows what is on that list and presents them as options, he is as good as it gets. If he only mentions Prednisone, IVIG and splenectomy, he is from the dark ages and not who I would want treating me.

Can you give us some details of your ITP history?

I have had low platelet counts for around 6-8 years. Originally they were in the 70 neighborhood and after much researching as well as an informal consultation with an MD collegue decided to live with it and not worry, as I rarely bruised. I should mention a bit of my history, I am a 25 year veteran chiropractor who has a strong belief in natural healing. I was diagnosed with breast cancer over 4 years ago and treated it all naturally. At the time it was overwhelming to me but now, and in comparison with my recent progression of ITP, managing the cancer diagnosis cancer seems like a cakewalk. of course no medical doctor would have anything to do with me as I refused traditional care in favor of alternative therapies.
About a year ago I considered having the breast lump removed (after being bullied by an oncologist friend of mine) and so consulted with a surgeon who after seeing my low platelet count (55) told me I needed to consult with a hemo prior to surgery. I did, and after bantering with him about how much I detested prednisone, I allowed him to put me on it for a week, which proceeded to plummet my platelets to 12. He immediately wanted to do a bone marrow biopsy on me because he denied the possibility that it could have been the prednisone that reduced my plateleUstashi that was not what prednisone should do. I never returned to his office and retested myself a few weeks later and the platelets were beginning to increase again so I figuredi would be back to my normal low numbers and also decided not to have the lumpectomy. Fast forward to recent times....I decided to try to increase my platelets with natural remedies I found on this community site (plantago major and anamu) and thought I would get a baseline. My new count was 29. Quite a shock to me. My GP, an osteopath but really just a western doctor, freaked out and called me, insisting I go to a hemo. I told her I was trying some alternative things and she calmed down a bit. I also started going to an oriental medicine doctor OMD after finding an article about studies done with Chinese herbs on ITP. My OMD is very encouraging and has me on herbs as well as is a qigong master (ancient eastern healing art). I have been working with her for a little over a week now and begin my qigong studies in a few days. I also started taking papaya leaf extract 3 days ago and so did another count which came back at 19. Certainly not a good movement in a month and definitely alamed me. But I have only begun this treatment and as my OMD says it takes time for the body to heal. Naturally my DO called and was really freaked out and basically demanded that I go to a hemo. She wnted to give me the name of another one but I told her I would research that on my own (hence my query). I have researched the drugs mentioned on this site as well as splenectomy and frankly, I want to try everything else first. I will do anything in my power to avoid them. I have recently ordered the Hulda Clark zapper and will begin that protocol as soon as it arrives. I will take another count in a couple of weeks and hopefully things will be looking up by then.

Lisa:

Quite a story. Excuse me for asking, but why do you want to consult with a specialist if you have no intention of using a treatment that he would suggest?

I don't quite understand: Untreated breast cancer = progression and ultimate death. Untreated ITP = very small risk of death.

A count of 29 is right at the point where a patient could decide whether to treat or not, depending on which way it goes from there. The treatment level is between 20k and 30k. 29 is not freak out time, but it is wise to see a hemo for monitoring and possible direction.

Hopefully, someone will chime in with a possible referral.

I truly appreciate your response. I really don't want to go to a hemo but my GP basically told me that I must and that I needed to give her the name of one I am to see uor go to one she refers me to. I am not one to be bullied often but I hate to have yet another doctor against me. They all pretty much are. My most recent count was 19 and I will check again in two weeks. You, Sandi are a blessing as you have provided more useful information on your posts than I have been ble to find anywhere. I guess I just don't really know where the "danger" levels are and have let this doctor frighten me. I will relax a bit as my OMD has requested. Just not sure what to say to the DO.

Lisa, how do you take your own platelet counts?
Erica

Good luck, Lisa. I hope it works out for you and you find a doctor that you like and trust!

I would be interested in the natural treatments you used in order to get rid of breast cancer! Thank you!

I don't take them myself. I have a standing order with the lab from the DO.

I would be happy to share this information with you but I don't believe it is proper to do so on this forum. If you would like, email me at thedrlisa@gmail.com. Just tell me you are from the ITP group in the subject.

Hi Lisa,

You might want to look at the natural therapy section at homeopathy as a treatment for your platelets. You're not the first person I've known to treat breast cancer naturally (and successfully I might add!). H-pathy is inexpensive, easy to do, and very successful. It also would address any underlying conditions that might have been (or still are) a factor in the breast cancer you had. H-pathy done constitutionally, will treat your whole body, thus addressing any imbalances it has, not just platelets.

And I'm with you all the way on the doctor thing. They pretty much roll their eyes and then get nasty when I walk in the door with what they're going to do for me (afterall, I'm paying them to work for me). But I haven't lost a fight yet. Keep at it. I do appreciate that my D.O. will do whatever I ask of him. Makes life a bit easier.


patti