The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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IV Treatment with KDM for Lyme and can it be done on the NHS

Discussion in 'ME/CFS Doctors' started by beachy, Oct 29, 2014.

  1. beachy

    beachy

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    My daughter has just had the results of her blood tests back from Brussels and it looks as though she will get a diagnosis of Lyme with a few other problems, we have an appt with KDM coming up soon to discuss so I'm just trying to weigh up our options beforehand .Reading other people's experiences it seem as though the best treatment will be IV antibiotics.

    1. How do they give these in Brussels do they put some sort of fistula in so thay can be connected up to a line each day - I'm assuming they don't inject into a vein every day? If so has anyone had the fistula in then taken the antibiotics home to administer at home with the help of a nurse?


    2. Has anyone successfully convinced the NHS that they should give the antibiotics? Ha Ha

    Many thanks
     
  2. Daffodil

    Daffodil Senior Member

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    hi beachy. I think KDM's nurses do put in a PICC line in the arm and change it weekly but I do not remember exactly.

    in Canada, you can bring in 3 months worth of medicines for yourself from another country, but I am not sure about the regulations in you country, especially regarding IV medicines. you should call your health agency or border agency to find this out.

    if you had an IV nurse to administer the medicines and a local doctor to oversee the bloodwork, I don't think KDM would have a problem letting you take the meds home.....but I cannot say for sure since the meds are IV....
     
  3. maryb

    maryb iherb code TAK122

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    Of course you already know what a difficult road ahead you both have...
    A couple of people on here have talked about their treatment at KdMs, with IVs seems they have 4 days on and 3 off weekly.. The canula??is left in for the 4 days, new one each week. The course is 12 weeks IVs, 3 different ones. Is he planning on treating co-infections first?
    if you wanted to get a nursing agency here to do the IVs, need to get their agreement first, you would need to get the abx from the clinic I would think though.
    Quite a few people have been to the clinic from PR but not heard of anyone having the IVs at home in the UK. maybe Lyme Disease UK facebook forum may have members who have.


    My problems with going to the clinic were,, lack of suitable accommodation close to the clinic, availability of fresh groceries for my limited diet. I can't walk far so public transport is a no no. Cost of taxis are astronomical.
     
    Last edited: Oct 30, 2014
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  4. brenda

    brenda Senior Member

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    If you have a positive test for Lyme you could try Breakspear where they do port administration on the NHS but you need to be funded.
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    Here is a long thread by a member who had the IVs at home through a home health agency--but not in the UK. It does explain how it works though. There are also quite a few members who have written about getting the IVs at Himmunitas in Belgium.

    Best wishes!
    Sushi
     
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  6. justy

    justy Donate Advocate Demonstrate

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    Hi Beachy, I am a patient of KDM also.
    It is very unlikely that you will get any NHS help based on KDM's findings. If you can convince her GP to do the NHS tests for Lyme and they come up positive then you may get a few weeks oral antibiotics to deal with it. I odnt know of anyone who has managed to get more help than this. I looked at iv's at home with nursing agence and couldn't find anyone to do it.

    As I am so severely ill I also didn't want to risk doing this far away from a knowledgeable Dr... I am planning on going to Brussels for IVs early next year and have found a couple of places to stay, but also open to sharing with other patients.
     
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  7. beachy

    beachy

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    Thanks everyone for the suggestions. We have talked to KDM now and he wants to treat the mycoplasma infection first. I thought he would have decided the treatment plan before our conversation so that we could have had a more useful discussion, but unfortunately he hadn't so I still don't know very much more.

    he did agree though that my sister-in-law who is a nurse would be able to administer any intravenous anti-biotics so that was good news. we would just need to get a PIC line put in which we could get done in Brussels or hopefully one of the local private hospitals would be able to do it for us.

    We haven't talked to the GP yet but she had already had a negative Lyme test in the UK so probably won't be any use.
     
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  8. maryb

    maryb iherb code TAK122

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    The quote I got for a PICC line from a private hospital in Hertfordshire was £3000, hope you can get a better rate elsewhere.
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am just wondering if your daughter is a minor and whether your sister-in-law would be legally indemnified for treating her? Nobody tends to think about these things in advance but very occasionally things go badly wrong.
     
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  10. Min

    Min Guest

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    The NHS test for Lyme is notorious for giving false negatives, it is not fit for purpose.

    if you test positive privately, as I did, the NHS will not accept it and you will be denied treatment. The very few Lyme literate Lyme doctors in the UK are hounded by the GMC. Accessing treatment unless you can afford the Breakspear seems impossible.
     
  11. maryb

    maryb iherb code TAK122

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    @Jonathan Edwards
    Prof KdM will prescribe the IV abx, as long as they are administered by a qualified nurse I wouldn't have thought there would be a problem with having them done in the UK. FWIW I would get things set up at home but then probably arrange to stay at the clinic for the first 4 days of each abx just to make sure the doctors are on hand for any reactions (hopefully not). You would than have 3 days to get home and continue abx for the next 3 weeks.
     
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  12. ukxmrv

    ukxmrv Senior Member

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    If you do need a nurse from an outside agency I used the company Healthcare@home for IVIG infusions at home. They might be able to help with the AB's if your SIL isn't able to.

    https://www.hah.co.uk/
     
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  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    People forget about indemnity and it is not a trivial issue. I encountered it when setting up my research on rituximab. At that time I had blanket cover for anything I did on NHS premises under what used to be called Crown Indemnity. Then everything changed and a year or two later I would have had to make specific arrangements for indemnity for my research even though I was doing it in an NHS/University department.

    A nurse administering a drug as part of her employment, whether NHS or private, will have in place indemnity for whatever she does either through the NHS scheme or a personal insurance arrangement. Doctors have a hybrid system with both so they pay insurance premiums to a non-NHS organisation as well. However, if a nurse gives a treatment which is not part of her employment duties she will need to make sure she is indemnified for what might happen. Since this is not a routine situation I strongly suspect that this would not be at all easy - maybe even impossible in practice. No insurance company is going to provide cover for giving a treatment to a relative as a favour.

    I don't want to alarm people but what if a catheter is dislodged or gets infected and there is an embolic stroke or endocarditis that leaves the patient disabled life - long, with a reasonable claim for millions of pounds of care costs? I would not want to put a sister-in-law in the situation of being on the receiving end of such a problem. I administered IV chemotherapy to my wife forty years ago because it was more convenient for me to do it than for her to go to an NHS hospital once a week. But if anything had gone wrong I don't thhink we would have ever had a case for compensation. I am not sure I would do it now. I might, but I am not sure. And if the patient here is a minor the issues are much greater.
     
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  14. maryb

    maryb iherb code TAK122

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    Ah but therein lies the difference. Your perspective is based on the risk of having to pay compensation if something goes wrong. Of course I understand that, the NHS is a massive target for claims, some justified, others not so???

    We are coming at life (the one we don't really have) from a different perspective.
    When you are so sick, all you can do is cover bases as much as possible and then go for it and hope for the best. We have no choice other than to stay sick for the rest of our lives. We have to help ourselves, at least some doctors like KdM are trying to help us, nobody in the NHS is listening.
    The relative in question is aware of all the medical risks, she will face them daily in NHS practice. People like her are an absolute blessing.
    Also what is there in life that doesn't have a risk?
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Maryb, I think you are missing my point. I have nothing to do with the NHS now and was not employed by the NHS. I am not talking about costs for the NHS. I am simply saying that one has to consider whether one is prepared to make one's sister-in-law bankrupt, not to mention the effect of guilt on the rest of her life? The answer may be yes, the calculated risk is reasonable to take, but I think people need to be sure they understand the implications. I have seen guilt destroy families in this sort of context.
     
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  16. maryb

    maryb iherb code TAK122

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    @Jonathan Edwards
    No but this is how NHS personnel think is it not. Why would the SIL be made bankrupt? I would trust my family with my life. Do you mean the NHS would sue the SIL if they had to pick up the care of anyone left disabled?
     
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I cannot see that what NHS people think has anything to do with this problem Maryb. Of course the NHS would not sue. But the sister in law might lose her job. I think you need to think through what might really happen here. Think hard. Human nature is complex and unpredictable, especially in the face of illness, as you know. I have already said enough to upset the people involved more than I would like, but I think these things do have to be said.
     
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  18. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    @maryb, I think what Jonathan Edwards is saying is that if the family hires a home-health nurse to do the IVs and something goes horribly wrong, the insurance of the home health company would pay for the care of the child. If the SIL does it outside of her work and something goes horribly wrong, the parents would have to stand all of the expense of caring for the child themselves or sue the SIL.
     
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  19. maryb

    maryb iherb code TAK122

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    @Little Bluestem
    I understand that but what I say is, we either accept the risks or not, its a big decision I agree. In the end the parent will make the right choice for their child, that's what they do. I've met so many heartbroken parents over the past few years, their despair is so evident. I just wish them all the best luck in the world and that their children will grow up to live normal lives, that's all they want.
    I consider myself as 'lucky', I had a good life, professional career, children,g/children, happy social/hobbies. before this illness got me. I'm not posting again on this thread as I've said what I think.
     
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  20. beachy

    beachy

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    As my daughter is an adult she will be making her own treatment choices, I'm just trying to help her find out what her options are. We had already thought about the implications of IV treatment at home, but actually there are also serious considerations for having it done in Brussels, not least being the fact that if anything goes wrong normal travel insurance won't cover you for health related travel . We have at least 2 months now to think about it as she needs to first start a course of oral anti-biotics
     
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