My dr talked on phone to Dr Berg!!!!!!!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by teller7, Jun 18, 2003.

  1. teller7

    teller7 New Member

    Yes it's true. I got a call from my doctor this morning and he has set up an appointment for tomorrow for my husband and I to come in and talk to him. He said he had a long talk with Dr Berg yesterday. He said it's complicated so he wants to talk to us in person about the conversation. I'm so excited I can hardly think straight.
    I will let you ALL know what I find out tomorrow. I have to say I'm a little scared, too. Should I be?
    Carol
  2. sujay

    sujay New Member

    This is fabulous news! I'm so happy for you. The unknown is always scary, but now you have REAL REASON TO HOPE. Congratulations! We'll look forward to hearing about your progress.
    Sujay
  3. teller7

    teller7 New Member

    Gosh Sujay and Jellybelly I'm really excited more now after reading your messages. I do have a question. Did your insurance pay for part of the tests? My husband said if this will help me, we'll try and make it somehow. Is it real expensive? I'm getting the cart before the horse here. I must save my energy for talking to the doctor tomorrow and not let myself worry about incidentals at the moment. Right? Talk to you tomorrow. Hope I sleep tonight. I'm sounding like a kid who might be getting a big present tomorrow. Byeeee
  4. crissyfamily

    crissyfamily New Member

    Well, we all justed started heparin today. My husband and I started the injections and not bad at all for the 1st shot. Daughters are on oral and it does not taste bad, just put liquid under tongue and hold for 30 seconds and then swallow (just a little salty) and then don't drink anything for 10 minutes. Kalina restarted HEPARIN again (only after being on it for 1 week last Friday because our doctor stopped her to do DEXA scan (for osterperosis) and blood platelet test (to see how thin the blood is) 1st. Next week we start Lubrokinese (spelling?) an enzyme (replaces Bromeline) to assist in breaking up the fibrin.

    We are already on antibiotics and have been for 2-3 months and has made some difference except for me who has worse hypercoagulation. Our Dr. goes to the HEMEX seminar in Phoenix Arizona on June 28th so we'll find out more after she gets back and we meet with her on July 3rd. Kalina and I are going to start a journal (only a once a week entry) to record each of our experiences so we can share them with the board at some point.

    After being on heparin for 2-4 weeks, the little critters are supposed to come out of hiding inside the cells because the fibrin is breaking up and at that time we are supposed to feel worse and that is when our dr. is going to redo the Polymer Chain Reaction (PCR) test on me again as I am the worse one and then hopefully they will find out what little critters are that are in hiding. Then they can treat us appropriately.

    I am happy that Teller7 is going to try to do the test also.....and she should be EXCITED!

    Take care.....Crissy
    [This Message was Edited on 06/18/2003]
    [This Message was Edited on 06/18/2003]
    [This Message was Edited on 06/18/2003]
  5. skychomper

    skychomper Member

    Im so happy for you!!! its so nice when progress starts to be made. don't be scared, I am still working on getting answers myself

    I have been wanting to get the ISAC test. I don't have any docter right now. can anyone tell me who they go to, or if any of them are in the new york area? I can't seem to find a docter who will help me find answers, or be a little more proactive. would I have better luck just seeking out a hematologist separate from a "cfs" doc to at least run this test?
    skychomper
  6. sujay

    sujay New Member

    Hey, Carol,

    We're eager to hear about your progress. If your doctor has been talking to Dr. Berg you're in good hands.

    If your first ISAC test is clearly abnormal, a letter from your doctor explaining that you have a variant of Anti-phospholipid Antibody Syndrome may help persuade them to cover the test and allow better your doctor to monitor your response more easily. Sometimes the initial test is NOT clearly abnormal, particularly if you've been sick for a long time. Then it sometimes makes sense to repeat the ISAC after you've been taking heparin (and perhaps bromelain or lumbrokinase as well) to see if your immune system will reactivate your coagulation system and demonstrate the abnormalities we expect to see. (Your cagulation system may have done such a good job "hiding" the putative pathogen that the immune system has "forgotten" to pay attention to it. That's one reason we expect you to feel worse sometimes, because an active immune system creates chemicals that make you feel sick, which reminds you to take care of yoruself while your body fights off infection.)

    I'd better stop before I cause too much confusion. Your doctor's right. It's complicated. But I firmly believe it finally offers us a key to unlock some of the mystery that shrouds this disease.

    I was too sick even to remember if my insurance covered my tests when I first became ill (though some of my patients have policies with the same company that are covering the test now.) I hope you don't have too much problem with this aspect of your care. Right now my health is pretty good, but I'm still dealing with the financial fallout. I'd rather be here, though, than still stuck in bed, and worse yet worrying about my soon-to-be teenaged son.

    I'm glad to hear Chrissy and Kalina are going to be monitoring their progress so closely. I was too sick to consider anything like that when I first became ill, but I think a weekly report presented to this board at some time would be very instructive. Best wishes to you all.

    Sujay
  7. crissyfamily

    crissyfamily New Member

    Wednesday Night 6/25/03 was the End of week 1 ! Thursday 6/26/03 was the start of week 2 !

    Crissy is: Sleeping more than usual...but not any more quality sleep

    Skin stinging more than usual...

    Stomach is really bruised and sore from 2 shots per day. Shots just sting a little bit when you do the injection.

    Body internal vibrations not quite so bad...

    Ears still ringing incessantly loud... but pressure is changing in them....

    feet do not hurt so much when I hit the floor from the bed in the morning

    my feet seem a little less stiff from the peripheral neuropathy, maybe not so swollen feeling is a better description...

    can sit longer at the computer and not feel so bad. My sister has an ebay business and I help her with that so I am on the computer a lot....

    my face doesn't appear so red and blotchy

    my ribcage between my chest doesn't hurt as bad - felt like something was pushing it out and trying to get out of my body (like maybe a REALLY big ugly critter)...the pressure was very hurtful....

    Husband: more tired, but doesn't notice much difference....but he was not so bad with hypercoagulation problems.

    Daughers: are on oral heparin and are saying they are tired... maybe that is from it starting to work and the little critters coming out into the open... (they haven't had too many symptoms prior to starting heparin: just tired, feet sore, kinda red faces and breakouts and really red face when they stoop over to dry their hair, etc.)

    Yesterday, 1 week after starting heparin (per Dr. Berg's recommendation) we did start the Boluoke (Lumbrokinase) mfg by Candada RN Biochemical Inc. but Doctors can only order. The painful part is that a 10 day supply costs $85.90. This will be like almost $600 a month for this alone... OUCH!!But daughters do not have to take it so that helps. I do not know yet how long we have to take it.

    Kalina and I are both going for a Dr. visit on July 3rd (1/2 hour apart from each other) and we may have a chance to meet each other! Our Dr. is going to the Hemex seminar next Saturday and we are both hoping to find out as much as we can from her during our next visit.

    Not a lot to report yet....but wanted to update the board on our family's experience after 1 week on heparin.

    Thanks to you all for your support and I hope we have FANTASTIC results that we can share with you all!!

    I'll keep you updated....

    Take care!!! Crissy


    [This Message was Edited on 06/26/2003]