Planegirl2 Procrit study!

Discussion in 'Fibromyalgia Main Forum' started by TiredbutWired, Oct 19, 2002.

  1. TiredbutWired

    TiredbutWired New Member

    Thank you for responding.I have emailed with Alex and now Dr.Mohamed called and wrote,they want to know if I would be willing to wean off of Provigil and Atenolol.I can not get out of bed without a stimulant but I guess you have to make a sacrifice to make progress.I am going to fax them over some of my abnormal test results.I could only get the interview to come up so I am not sure what they are looking for but I thought my tilt-table test would help.I talk to my doctor in Ft.Lauderdale tuesday and hopefully they will support this.Do you live in miami?Sorry for all the questions.I go to Biodoron with dR.kELLER but have not got to see him yet,they have been very aggressive and helpful.I also still go to Dr.Lapp in NC he is the one that told me about this study.He wants me to do the ampligen study but I do not know if I can leave everything for 16 months.I do not feel like a victim anymore and I just want to help I do not care if the study helps me or not.I just want to try to make a difference.Thank You for all the info,Tracey
  2. TiredbutWired

    TiredbutWired New Member

    Thank you for responding.I have emailed with Alex and now Dr.Mohamed called and wrote,they want to know if I would be willing to wean off of Provigil and Atenolol.I can not get out of bed without a stimulant but I guess you have to make a sacrifice to make progress.I am going to fax them over some of my abnormal test results.I could only get the interview to come up so I am not sure what they are looking for but I thought my tilt-table test would help.I talk to my doctor in Ft.Lauderdale tuesday and hopefully they will support this.Do you live in miami?Sorry for all the questions.I go to Biodoron with dR.kELLER but have not got to see him yet,they have been very aggressive and helpful.I also still go to Dr.Lapp in NC he is the one that told me about this study.He wants me to do the ampligen study but I do not know if I can leave everything for 16 months.I do not feel like a victim anymore and I just want to help I do not care if the study helps me or not.I just want to try to make a difference.Thank You for all the info,Tracey
  3. planegirl2

    planegirl2 New Member

    from what i have read about you here on the message board, you are like me, we want to find the answers to what is making us sick....the more studies we allow our bodies to be in, the more they will find out about what makes us have this terrible cfs/fms. i dont know what you want to know about this study, yes it was hard, really hard, going off the medication, and yes i would do it again! I would do any study that i can be in, each thing that is learned is that one step closer to getting well. Yes, i am on procrit, and it does help but it is not my only problem, and i have been going through a feeling as though i had mono, i feel terrible, fatigue, sore throat and i feel as those my lymph nodes in my neck want to explode,,,but go for the study, it might be YOUR answer to good health!
  4. TiredbutWired

    TiredbutWired New Member

    All the symtoms you are having right now is exactly how I feel now.I tested positive for mono about 6 to 8 weeks ago and did not feel that bad then but now.....Ugh!Sorry you are also going through that.I agree we seem a lot a like.I do not beleive that I got sick for NO reason.I think I was chosen and I am determined to make a difference.I am out of the greiveing stage and no longer feel sorry for myself.My family can not understand why I would want to be in a study,because I tell them that I do not care if I benefit or not.That is why I want to do the ampligen so bad it is such a big sacrifice especially moving.At Biodoron they sometimes do research,its in Hollywood so I will let you know.THANK YOU for being such a huge inspiration.Tracey
    [This Message was Edited on 10/20/2002]
  5. TiredbutWired

    TiredbutWired New Member

    He said as long as I was willing to go off the meds he mentioned,I qualified for the screening visit.YEAH!I can not beleive you go to biodoron also;small world.I see Dr.Keller Nov,21.But I did see him walk by and he seemed to beam with brilliance.I felt a little starstruck.[smile]I have been seeing Dr.Villar for a few months and I really like him,he has been very aggressive and never makes me feel rushed.He has been having me come in every week or 2 weeks.They are all so freindly and kind.The nurses make me laugh so hard I forget I am even sick.Tracey
  6. TiredbutWired

    TiredbutWired New Member

    for letting me know the doctor was a she before I really embarrssed myself.I do not why I just assumed it was a he.When I went to Biodoron today they totally supported the study.So if I get in Great if not I will keep trying other options and wait for some doors to open.Hope you feel a little better today!Tracey
  7. planegirl2

    planegirl2 New Member

    i will see any doctor that can help me, even it meant going to a toe doctor (does one exist)! YOu will also find the people doing the study to be nice and very professional, and Dr. Mohamed is young and very smart, she deserves alot of credit with this study! Believe me, you will be happy going to the study, one step at a time we will get there, sometimes though, i only see a brickwall! but i will keep truckin until there is no where else to go. It will be hard, it wasnt easy for me, but Dr. Mohamed had me hang in there,,,,,you will know what i mean when you meet her (she always has a smile on her face). goodluck,,,,,,wishing the best!
  8. TiredbutWired

    TiredbutWired New Member

    That was cute a toe doctor.How much longer do you have left on you study and were you on stimulants prior to the study?Just curious,Tracey
  9. TiredbutWired

    TiredbutWired New Member

    I have not heard anything back from them yet.I told But theI Dr.Villar they can take my heart medication but NOT my stimulants.But I* will take the sacrifice.Sometimes you have to take one for the team![smile}Did you treat the HHV-6 I can not beleive what a nasty virus this is?I am still trying to find out if I could do the cost recovery Ampligen at Dr.Kellers because he is a approved site.Take Care,tracey
  10. TiredbutWired

    TiredbutWired New Member

    I am still waiting for answer but would love to chat about options.Have you looked at my profile?I understand your concern,I find it so hard to try to remember which posts I open and to see if they replyed back.By the way I got confused and was thinking that Janice was Jaimie and I told janice that someone on the net was talking very highly of her and Biodoron.I did not say your name and It seemed to make her day.Then when I was checking out they asked if I had met Jaime D. and I realized oops.But Janice deserved the complement anyway.Hope to talk to you soon,Tracey

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