Sujay - well here goes

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jun 2, 2003.

  1. tansy

    tansy New Member

    With all your advice and info in mind I shall be puting all this to my GP on Wednesday. Printed out basic info from Hemex site, your test recommendations, and will give her brief notes on why I think that it should be investigated.

    Regardless of what she might think I will persue this. I'm just so grateful that you and jellybelly pushed this until it got through my addled brain. Have decided oestrogen too risky, don't even want anything changing hormone levels at the moment. I will concentrate on getting this, and the infections treated, then look at other problems afterwards because some may improve along the way.

    Thankful hugs

    Tansy
    [This Message was Edited on 06/02/2003]
  2. Sindy-Uk

    Sindy-Uk New Member

    Hope it all goes well with your GP on Wednesday. I would be interested to know what tests she would reccomend. Sujay and jellybelly had also brought to my attention that I may have a hypercoagulation problem. When I spoke to my GP she thought I could have that problem, she said she will try to check out what tests she could have done for me. When I spoke to my CFS consultant in London about the ISAC panel at Hemex labs, he said that it was not possible to have this test in London. He said the only way I could have the test would be to travel to USA and actually have it at the lab. I might try to get tested for Hughes syndrome here. When I looked at the site, they seem to suggest 2 tests. First the anti cardialipin antibody test, secondly the Lupus anticoagulant test. I dont know if these are anything like the test at Hemex labs.I will see next week if my GP has found any more info on it.

    Best of luck

    Satin
  3. tansy

    tansy New Member

    Thank you so much for that info. I will look up Hughes Syndrome on the www. Don't know how my GP will respond but she has tried to help and is open to the more enlightened approaches to illness.

    Between our GPs and ourselves we may find the way for others in the UK who believe this underlies their problems.

    Cheers

    Tansy
  4. tansy

    tansy New Member

    My GP didn't dismiss the hypercoagulation which was a good start. She cannot access all the tests herself due to dramatic cut backs in what tests and facilities local GPs are allowed to use without going through a consultant. Frustrating for her as well as me.

    She can, and has, requested the Anti cardialipin, CBC, sed rate and PT/PTT. The others (lupus anticoagulant, D-dimer and Anti - B2 GPI) will have to go through the local haemotologist; but after my session with him in November don't think there's much chance of his taking any of this seriously

    She did keep the info from Hemex. For me it's already been hard accessing anything due to past bungles, the local hospital is really bad regarding CFS (and is classified as failing), and out of area referrals are nigh impossible for anyone. She expressed her own concerns, it's making her life and all aspects of her job very difficult.

    So will have to see what these, and heliobacter test, show, then decided what to do next.

    Cheers

    Tansy
    [This Message was Edited on 06/04/2003]
    [This Message was Edited on 06/04/2003]
  5. sujay

    sujay New Member

    Could you get the testing done at HEMEX if you paid for it yourself? If so, there's no reason your doctor couldn't order it, and it would be worth every penny and more of the $400 (about) that it would cost. Dave Berg should be able to answer just about all of her questions, and I'd be happy to talk to her, too. (You may email me at yahoo under mail4sujay if she wants my phone number.) I have a ptient who was diagnosed with MS several years ago, and suffers from terrible fatigue. Her internist sent her to me and she's already (after just a few weeks of treatment) doing better. I have never before seen so many laboratory abnormalities on her Immune System Activation of Coagulation Panel and Hereditary Thrombosis Risk Profile (both done at HEMEX, but NON of the conventional tests gave any hint that she might have a problem. Thank goodness her doctor was willing to really listen to me, and to take her complaints seriously. Keep fighting, Tansy. I know G-d wants all of us to be healthy. I just wish we didn't have to see everything through a glass darkly all the time. Love, Sujay
  6. tansy

    tansy New Member

    Hi

    My GP did seem to take it seriously and I informed her that you would be willing to discuss this with her. I think she's waiting for the test results first though. I also gave her a print out of the introductory info from the Hemex site which she kept for reference - good sign. I'm hoping she will look at that, I did say that Dr Berg has been very helpful to others because he clearly wants to get the message across. Thanks for your e-mail address.

    I think my past medical history helped too plus having very MS like symptoms, thanks to Jellybelly and yourself I knew which parts to refer to. She was aware of Hughes Syndrome so I tried to explain how in our cases chronic infections were the underlying cause. Even if not able to do so under the NHS I feel sure she will assist me if she can.

    In normal circumstances any positive test results would mean seeing the local haematologist, but after my last appointment with him I know he will not even consider looking at this newly discovered explanation.

    I did send an e-mail to Hemex asking what the situation was for people in the UK but have not had a reply, will try again. Yes $400 is worth it but it's the fact all this is over in the States that makes it a major problem physically as well as financially. If the blood can be drawn here then there is no problem. Whatever, I have every intention of finding a way to address the hypercoagulation and any microbes that are still hanging around.

    I'm just so warmed by your offers and assistance and support. I know how hard it all is for you, but I also understand why we still do this regardless when so convinced and passionate about something we know is so very important.

    Love

    Tansy


    [This Message was Edited on 06/04/2003]
  7. sujay

    sujay New Member

    Delighted to get your news. I'm sure you're on the right track. We have to use a special set of tubes/instructions (that come from HEMEX) and the air-express them on dry ice. Trans-Atlantic flights will take a little longer - I'd just use more ice. Good luck. I'm looking forward to hearing how things go. Best wishes, Sujay
  8. tansy

    tansy New Member

    Just got a reply to my e-mail from David Berg. He has asked me to call him. I will pass this 'phone number onto my GP too.

    Love

    Tansy
    [This Message was Edited on 06/04/2003]
    [This Message was Edited on 06/04/2003]
  9. tansy

    tansy New Member

    Thanks so much for that info, have just printed it out. I live in the UK and know that I've a major challenge getting this accepted, in spite of my medical history. I do however, have a great GP so I'll be passing this onto her next time I see her.

    I believe I personally will have to go very carefully once any anticoagulant therapy takes effect, so all the info I can get my hands on is most welcome. Sujay has been brilliant over this. As she so correctly says this is all so exciting. Your post gives me more hope than ever.

    Cheers

    Tansy
    [This Message was Edited on 06/07/2003]