Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Best doc in UK?

Discussion in 'ME/CFS Doctors' started by burgeo10, Sep 16, 2017.

  1. wiltedflower77

    wiltedflower77

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    Thanks for replying @Countrygirl sorry to hear how ignorant your gp is being that's awful. They can't force you to do the PACE stuff surely!! Do you know what Weir does use with some patients isnt it antiviral drugs?
     
    Countrygirl likes this.
  2. Binkie4

    Binkie4 Senior Member

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    @wiltedflower77
    Re your message about Dr Bansal.
    You will see from my earlier posts where he has his private clinics.

    His main NHS role is as lead for the Sutton hospital CFS service. I saw him there once 8/9 years ago, but when I was rereferred to the service last year, it was impossible to see him, just a nurse.

    I arranged to see him privately this year. He offers a list of general advice including many supplements. He was willing to prescribe antivirals for me; now in my 5 th month and maybe some improvement. He tends to work empirically; rather than doing loads of tests, he sees your response to treatment, although he will look at any previous tests you have.

    Appointments can seem not long enough although at my last appointment when there was something more complex to discuss, he allowed plenty of time.

    He is very busy with a private practice as well as being the local NHS lead. He is also involved in research, and has published at least 2 articles this year and last year so is very occupied.

    So has an interest in the science as well as clinical practice.

    I hope this is of help.

    EDIT: addition of para beginning Appointments.......
     
    Last edited: Sep 21, 2017
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  3. Binkie4

    Binkie4 Senior Member

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    @Countrygirl

    Am sorry to hear you are still having difficulty with your GP but very glad you were able to see Dr Weir.

    I really hope that Nice's decision to review CG53 will prove of use to you. It would seem unreasonable that s/he should require a PACE treatment when Nice itself is considering far wider issues.

    Wishing you well.
     
    MeSci and Countrygirl like this.
  4. Countrygirl

    Countrygirl Senior Member

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    I am aware of the use of ARVs.

    His words to me were, 'There isn't any treatment'.

    The value of Dr Weir is that you have that rare commodity of an intelligent doctor who has studied the illness and knows his onions.

    He will write letters for you that accurately reflect the illness and your capabilities.

    However, your doctor is free to ignore it.

    Personally, I was overwhelmed to be able to speak to a doctor who knew what he was talking about.
     
  5. Jenny

    Jenny Senior Member

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    What type of anti-viral does he prescribe? I've tried long-term Valtrex which did nothing, but would like to try Valcyte.
     
  6. Binkie4

    Binkie4 Senior Member

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    @Jenny

    I don't know what he would prescribe for you. I imagine he would tailor it to your condition.
     
  7. Jenny

    Jenny Senior Member

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    Yes, but could you say what he prescribed for you?
     
  8. burgeo10

    burgeo10

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    Sorry to hear about your troubles @Countrygirl - these GPs can be a real terror - any other better ones at your practice?

    I am seeing Dr Bansal tomorrow - I'm fortunate enough to have been approved by my medic insurance as my relapse may have been caused by EBV ( I tested positive in July).

    I wondered if anyone could recommend testing i should ask for just in case Dr Bansal would do it? It's quite rare to have the chance not to pay for the tests.

    Thanks as always
     
    wiltedflower77 likes this.
  9. burgeo10

    burgeo10

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    Quick update:

    I saw dr Bansal yesterday - he was certainly one of the better and more likeable doctors ive seen.

    He did a few blood tests, which must be fairly complex as he said they will take 6 weeks to come back.

    As for treatment he prescribed me aciclovir - I tested positive for EBV in July so I assume that was his reasoning. He also gave me a sheet of recommendations that he gives other recommendations (it is posted on another Dr Bansal thread somewhere) - but ive tried most (carnitine, coq10 etc)

    He recommended Syndol and Phenergan for sleep - does anyone have experience with these?

    Thanks
     
  10. wiltedflower77

    wiltedflower77

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    @burgeo10 thank you for letting us know how you got on. Sounds like it was fairly positive. Hope the aciclovir helps you. Where did you get tested for EBV? Thank you
     
  11. wiltedflower77

    wiltedflower77

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    Forgot to say haven't tried Phenergan or syndol but do take diphenhydramine (spelling may be wrong) which is nytol and benylin and is an antihistamine to help me sleep. It does help but feel bit groggy next day. Wouldn't want to take it every night.
     
  12. burgeo10

    burgeo10

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    My NHS gp tested for infectious mononucleosis when I became ill and it was positive - I assume that means EBV
     
  13. burgeo10

    burgeo10

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    further to this, as im now starting aciclovir does anyone know where I can get comprehensive viral testing in London? obviously for as cheap as possible. Im also wondering about aciclovir, is it a drug you can take breaks on or will this affect its implications? and if it doesnt help can you take the more potent form afterwards (val something)?

    Thanks
     
  14. Mtb1966

    Mtb1966

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    I saw Dr Bansal a month ago following an initial appointment with a nurse at St Helier 3 months earlier, having had my initial referral 2 years ago turned down. He didn't run any further tests but based on my apparent chronic immune activation he prescribed 4 months of Aciclovir. He also asked my GP to give me 10 weeks of B12 injections and recommended some supplements ( carnitine, co-enzyme and d-ribose).

    Early days but I've stopped having naps mid-afternoon this last week and I've noted some improvement with my swollen glands as I've not felt the need to take ibruprofen most days. On the other hand I've been doing less than normal on account of heel bursitis which started (co-incidentally I hope) a day after I started the antivirals so have been on crutches.

    On the basis that he's the first doctor I've seen that has offered some actual treatment he gets a thumbs up from me.
     
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  15. ryan31337

    ryan31337 Senior Member

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    https://www.medichecks.com/tests/viral-antibody-screen
    I've used MediChecks a few times and had blood drawn locally and from The Docs Laboratory in London (MediChecks seems to just be an online front/reseller). This test is on my list unless something better comes along.
     
  16. Binkie4

    Binkie4 Senior Member

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    Yes, he prescribed acyclovir 400 x 3 times daily.

    I don't know if he prescribes other antivirals.
     
    Jenny likes this.
  17. char47

    char47 Senior Member

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    @Countrygirl all that just sounds appalling, it makes me shudder I'm so sorry you're having to go through that on top of everything else :(. I hope you manage to fend off the crazies without too much detriment to your health & spirit. Good for you for not allowing yourself to be bullied
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I use Phenergan - a brand name for promethazine, as an intermittent sleep inducer, about 3 days/nights in a row. It's usually more effective than the others I use, which are paracetamol & codeine, diphenhydramine & chlorphenamine. I've stopped another that I used to use - cetirizine - as it seems to have stopped working, or rather it's probably that my gut flora or something has changed so that it doesn't work at the moment.
     
    Binkie4 likes this.
  19. burgeo10

    burgeo10

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    Thank you! I will look into this lab. No luck on the aciclovir yet...
     

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