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What to do next: LDN or immunovir

Discussion in 'General Treatment' started by Katyw, Jan 8, 2015.

  1. Katyw

    Katyw

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    Hi

    I am trying to decide how to move forward with my treatment. I am managing a lot of my symptoms through various treatments but can't seem to identify a treatment that works for symptoms such as sore throats, swollen glands, virus /flu like feeling. I am in a position where I can either:

    1) Pay a private doctor to test for cytokines and specific viruses -parovirus 19, HSV 5/6. (Had most of the other viruses/testing) This particular hospital will provide treatment (immunivor) based on the results. The main disadvantage of this option is I would have to pay out £1000 for testing and then also £75 per month for treatment. I'm also sure I can get another type of anti viral if needs be.

    2) just start a prescription of LDN. I can get this online via a private doctor but I don't have anyone to monitor me or speak to in relation to this. A big advantage of this is that it only costs £30 per month and apparently is tolerated well.

    I just wanted to ask your advice on what to do as I am really struggling to know what would be best for my symptoms. I've been reading that although LDN is used for pain it can help regulate the immune system.

    I also think that maybe the first option actually deals with the potential root of the illness rather just dealing with symptoms.


    Your thoughts would be greatly appreciated.

    K
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I take both. I've been taking immunovir for over a year, alternating with a different immune modulator. I can't say that I notice much of a difference with the immunovir, but that could be because I'm pretty sick. I just started the LDN so I'm not sure about that.

    Immunovir is an interferon inducer, I think the LDN is a th1 shifter.

    You can get immunovir for about $100/month without an RX. That's a bit under what you are saying.
     
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  3. ukxmrv

    ukxmrv Senior Member

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    You can buy a lot of drugs with £1000.

    Do you have any positive or other test results so far? Have you asked to see a NHS Infectious Disease Consultant for testing Parovirus and CMV - I know that they won't do a Cytokines profile and I don't know how good their viral testing is (and they don't do HHV6/7)

    My approach was to buy my own drugs on the internet but I have had private testing in the past. If I was to do it again I would buy drugs to try and target the more common infections. I find Antiviral drugs and immunovir helpful but not tried LDN yet.
     
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  4. Ema

    Ema Senior Member

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    Both LDN and Imunovir have good safety profiles so I think you could try either (or both) without £1000 of testing.

    If you do have HHV6 or CMV, typically Valcyte or cidofovir are needed to lower those titers. Some people have had success with Famvir as well. You could always pursue this option later with private testing if you do not see enough improvement with the others first.
     
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  5. Katyw

    Katyw

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    Thank you so much for your helpful replies

    @minkeygirl - wow, didn't realise you could take both. That could be an option.

    @ukxmrv -very true. That's why I'm reluctant to spend that much, however, I have to have testing before immunivor will be prescribed with this private hospital! Don't know where else I could get that particular medication from. I have already been to an infectious diseases consultant on the NHS and he wouldn't test for those. I haven't been tested positive for anything yet but I'm pretty sure I have a reactivating HSV 6/7. I might try and just get this tested somewhere. I was hoping to find the virus that started this all as it could give me a better chance of improvement (maybe too hopeful!) I have been prescribed a cheaper antiviral (aciclovir) which I think is helping, but I think I need something stronger. I was just wondering if it's better to find out if there's a virus so you know the best medication to try. What do you think?


    @Ema that's good to know. I might have to try LDN first though as I have to pay for the testing to be able to get the immunivor prescribed so that would be the expensive element!

    Thanks again :)
     
  6. Ema

    Ema Senior Member

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    You can get Immunovir online without a script. LDN too...

    Send me a PM if you need links.
     
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  7. minkeygirl

    minkeygirl But I Look So Good.

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    @Katyw I was going to say what @Ema told you.

    I started on acyclovir which I got on my own. I now get Famvir with an RX but you can get Famvir, Valtrex and even Valcyte without an RX, but the cost is up there.

    The only thing I would suggest is that whatever you take, start with one at a time and go slow. Do you have a dosing schedule for the Immunovir? which btw is called Isoprinosine on the sites you would get them from.

    Right now I am taking Immunovir, LDN, Famvir and Acyclovir.
     
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  8. ukxmrv

    ukxmrv Senior Member

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    @Katyw, you can buy these drugs online and they may be cheaper than the prices you are currently paying to get them by private script in the UK.

    I do agree that it is best to know which viri you have before taking drugs. However there is not a huge number that people with ME and CFS are finding useful and for that reason I have not paid for extra testing and I am putting my very limited funds into trying the drugs instead.

    Acyclovir didn't do anything for me and it was Valtrex that finally made the difference. I am guessing that you are being seen at the B because they use Acyclovir? I would like to try Valcyte and my ME doctor would as well but I cannot afford to buy it. Your choice of AV may be dictated by how much they cost.

    You'll find threads on this forum on where to buy drugs and people's experiences with them.

    If I could afford to I would far rather do this under the care of a doctor and with proper testing so I am not trying to put you off or anything. I simply don't have the money.
     
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  9. Katyw

    Katyw

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    Thanks everyone you have been so helpful.

    I really think you're right and just trying a medication would be the best way.

    I am also really wondering if I should try valtrex or a stronger anti viral too.

    Do any of know if LDN and immunivor are ok to take with heart medication? I take ivabradine for severe POTS.

    Also, what's the difference with immunivoir and say an antiviral med like valtrex/famvir?

    K
     

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