Dr Enlander (well known CFS doc) to come to Ireland?

Discussion in 'Fibromyalgia Main Forum' started by Evadyl, Jan 9, 2008.

  1. Evadyl

    Evadyl New Member

    Hi everyone,

    I posted earlier today on CountDuckulas thread (Valcyte in the UK) that I was considering going to see Dr Lerner preferably or Dr Enlander.

    I had expressed in my correspondence with them the lack of CFS help in this country (Ireland) and that really there is no one that you can go and see here...certainly no one who can offer Valcyte to you.

    Imagine my surprise when I opened my emails earlier only to have one from Dr Enlander stating that if I organise 5 patients in Dublin that he will come over to see us the first week in May. He is doing a talk in London so he said he could come over here then. I couldn't believe what I was reading. I think that this is sooooooo nice of him.

    He also said that they fedex Valcyte to overseas patients if they can't get it themselves. This is great also.....although I suspect very expensive.

    I thought maybe there might be one or two people on here, maybe from the Uk who might like to have the opportunity to see Dr Enlander. If so you can express your wish on this thread.

    I am really touched by this and even if it doesn't come off it's nice to know that the sentiments are there.

    Hope everyone is having as good a day as possible today.

    Take care

    Love Evadyl

    [This Message was Edited on 01/10/2008]
  2. wld285

    wld285 New Member

    I am a patient of Dr. Enlander. Now I know to schedule my appointments around this trip!

  3. foxglove9922

    foxglove9922 New Member

    Dr. Enlander is an amazing physician. He is orginally from Ireland. Did you know that? He is also working with Dr. Kerr in London.

    I travel 7 hours one-way to see him. UK'ers, if you can ban together, this physician is awesome. He has a website that you can request an appointment on. Just google his name.

    Also, keep in mind, Roche is willing to work with patients who cannot afford Valcyte.

    I hope this generates some enthusiam for you UK'ers who have been downtrodden by the system.

    Best wishes to all,

  4. Lichu3

    Lichu3 New Member

    to something like "Well-known CFS doc to visit Ireland?"

    This might better attract those with CFS who do not know who Dr. Enlander is. Or something in the title saying "UK"?

    If you are able to organize, you could try to get the Valcyte mailed in bulk for everyone and might be able to cut down shipping costs.

    Any Irish CFS/ME associations?
  5. jasminetee

    jasminetee Member

    I've known how hard it is for PWCs to find a doctor in Ireland and I've hoped that situation would change and soon. It may not be as costly as you think to get the Valcyte. I hope not. You may want to search for other message boards for CFS in the UK. I know of one but i don't think i'm allowed to post it here. Just do a Google Search.

    Good luck and I look forward to hearing more.

  6. foxglove9922

    foxglove9922 New Member

    bumping this important post
  7. Evadyl

    Evadyl New Member

    I know it's great that this may happen. I still can't quite believe it.

    Lichu3 as you may have seen I took your advice and changed the thread title. I hope this attracts more interest. I would hate to see people missing out on this rare opportunity.

    We'll just have to wait and see....

    Take care

    Love Evadyl
  8. tansy

    tansy New Member

    he's really concerned about what is happening in the uk and has made his concerns known; so he gets lots of brownie points from me.

    good luck

    [This Message was Edited on 01/10/2008]
  9. ecoughlan

    ecoughlan New Member

    Hi Evadyl,

    How are you doing? I live in Cork and my mother who has fibromyalgia would love to go and see Dr Enlander in Dublin, if it is still going ahead? I am 32 and have CFS myself and may go to see him also. I have been diagnoised with diastolic dysfunction via echocardigram and would be very interested in talking to you, as I have also considered travelling to see Dr Lerner.

    Hoping to hear from you,

  10. Evadyl

    Evadyl New Member

    I have not received concrete confirmation from Dr Enlander re his visit here as yet. I passed on his emails etc to the Irish ME Org so I know that they are corresponding with him also. I will def add you and your mother to the list and if he does come you'll have the opportunity to see him.

    If it doesn't happen I am def hoping to go and see Dr Lerner. I have been in contact with his office re seeing him and it's def an option. I know it'll be expensive but I reckon it would be worth every penny if we got some improvement.

    That's interesting that you were diagnosed with diastolic dysfunction. I had an echo done and they told me that it was normal although mind you that was a few years ago now so I am sure things have changed at this stage.

    If Dr Enlanders visit doesn't come off how soon would you be considering going to see Dr Lerner??? I'd go tomorrow but the thought of the journey there is such a stumbling block.

    Looking forward to hearing more from you soon

    Take care

    Love Evadyl

  11. wld285

    wld285 New Member

    and I was talking to him about his trip. Seemed to talk as if he would be seeing patients over there.

  12. Evadyl

    Evadyl New Member

    That's good to know as I have yet to receive confirmation regarding his trip over here.

    Hope your appointment went well

    Take care

    Love Evadyl
  13. Evadyl

    Evadyl New Member

    I had an email from Dr Enlander's assistant and she informed me that he may see patients in either Dublin or Belfast in early May.

    It hasn't actually be confirmed yet but I just wanted to keep ye all updated.

    I really hope this comes off.

    Take care

    Love Evadyl X
    [This Message was Edited on 02/12/2008]
  14. Evadyl

    Evadyl New Member

    I got a further email from Dr Enlnders assistant to say that the dates he has available to come to Ireland to see patients are 2nd, 4th and 5th May. She did also say that he would be willing to extend this if more people wanted to come on board.

    Just wanted to keep ye guys upated. If anyone is interested in seeing him they can post on this thread and I'll get back to them

    Take care

    Love Evadyl X
  15. ecoughlan

    ecoughlan New Member

    Hi Evadyl,

    I'm really sorry to only get back to you now, I haven't been well the last few weeks...
    I just saw your post that Dr Endlander is available to come to Ireland in early May, that's fantastic isn't it!
    If you can add myself and my mother, J Coughlan to your list, that would be great.
    It would definitely be easier for us and for you too I'm sure if we could see him in Dublin rather than Belfast, if that's possible.
    I am away the week of the 28th of April, so if there is an option the 4th or the 5th of May would suit us better..
    I was wondering if you have got any details from his assistant about seeing him here, such as the cost of the visit, will testing be possible (maybe by fedexing blood tests to US labs) and how would treatment and follow-up work?

    As regards Dr Lerner, I rang his office and was told by the secretary that I would have to go & see him roughly every 6 weeks, which I don't think I would be able to do, either financially or physically... I presume this is because anti-viral treatment needs to be closely monitored.
    Like you, I have had quite a few tests done through Dr Sarah Myhill including the Mitochondrial Function/ATP test, Translocator Protein Test, Cell Free DNA, Salivary Adrenal profile and antioxidants, Glutathione Peroxidase and Superoxide Dismutase and I performed poorly in most
    of these tests.

    Take care,


  16. wld285

    wld285 New Member

  17. BrainFogBaby

    BrainFogBaby New Member

    ...last week and he again mentioned his trip.

    He also mentioned that he was involved with the genome project written about in The Telegraph, where they uncovered the 88 gene abnormalities that may be associated with ME. While some people may question his protocol from time to time, he certainly keeps current with the latest research!

    good luck!
  18. wld285

    wld285 New Member

    Wow what exciting news!!!! I see him May 1st, just before he leaves. I have been sort of down in the dumps, wondering if he is treating me properly for the Lyme, and also when are we going to address all the other issues I went to him for in the first place. I feel like I am too old to be trying to work on only one issue at a time (I don't have that many years left!!)

  19. Evadyl

    Evadyl New Member

    I'm sorry that I'm only seeing this post from you now.

    I don't know if the date will suit you and your Mam. It's been changed to Fri 2nd May. Dr Enalnder will be in Belfast for the other days....4th and 5th I think. You mentioned that your away that week so maybe it's not good for you???

    You mentioned blood testing etc I don't think that Dr Enlander will be doing any blood tests on the day although his assistant has sent a list of blood tests which we can have performed before his visit although to be honest I don't think that a lot of them would even be available in Ireland. I assume you just bring results of any tests you've had done with you on the day. I can post the list of test if you'd like. Just let me know.

    You can post again to let me know if the date suits or not and if it does I will add you both to the list.

    Take care

    Love Evadyl
  20. ecoughlan

    ecoughlan New Member

    Hi Evadyl,

    Can you put my mothers (J Coughlan) and my name (Elaine Coughlan) on the list to see Dr Endlander on 2nd May.
    I am back on Wed 30th April and will be tired, but I will make it.

    If you could post the list of tests that would be great - I have had a good few tests done over the yrs and could see if I have any of them already done.

    Should I ring his office for appointment times, approx cost, where we see him, etc?

    Thanks so much for organising this,