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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
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How to improve immune function? - UK based

Discussion in 'Immunological' started by mermaid, Apr 23, 2014.

  1. mermaid

    mermaid Senior Member

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    I have had ME/CFS around 9 years now....with a relapse 4 years ago that worsened it from being mild and able to work to a worsening of symptoms and unable to work. I have done quite well in working through the symptoms especially the digestive ones which were very difficult. I have to 'manage' them now via a change in diet, but if I do that then my system functions quite well (basically Paleo now with lots of veg as well as meat/fish).

    I have also addressed my thyroid issues as well as I can and I think that is probably as good as it will be (using T3 only instead of T4). Also done my best to help adrenal problems too. I have OK Ferritin, vit D, and take useful vits/minerals. MY energy is better in between cold viruses, but there are a lot of them.

    The one symptom that hangs around and I realise has been there for longer than 9 years is my poor immune system. I don't have copies of old 'blood counts' which is pretty well all the NHS will do. Recent blood counts show low platelets and borderline low for things like lymphocytes, monocytes, total white cell count, so clearly things are not right.

    Privately I have paid for some tests that are supposed to point to immune problems and why.....Lymphocyte sensitivity test, and DNA Adducts test. I had that done a year ago and just redone. However I have done my best to address those things it threw up and yet I still am continually fighting cold viruses.

    Just wondering if others have this problem and what they do about it? I use Oil of Oregano and Echinacea at the moment, but ideally my immune system needs to be strengthened long term so I don't get ill as much, but how? and what works?
     
  2. ukxmrv

    ukxmrv Senior Member

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    I've not had much success with the cheaper options like supplements, vitamins and essential oils. Tried so very many things and wasted a lot of money that way.

    For the cold viruses i find though that Ester Vit C and Sambucol (high doses) help me a lot.

    http://www.chemistdirect.co.uk/bran...crid_46460712684_kword_sambucol_match_e_plid_

    For immune system functioning I've taken Immunovir, Valtrex and other drugs that I buy over the internet. MAF314 was very good for me. Celebrex which I was presribed by a doctor for pain has also helped with the Valtrex to lessen my viral symptoms.

    If I had your own immune profile I'd take IVIG again. These are not cheap things but I find it hard to answer your question without mentioning them because I've done so badly on the easy, over the counter, cheaper things.
     
    heapsreal likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    this is immunovir http://brandmedicines.com/index.php?main_page=product_info&products_id=746
    being in the Uk u might be able to get a dr to prescribe it then u could get immunovir alot cheaper or being close to europe then maybe able to buy it somewhere like france or a friend to get it for you. its my understanding it is quite cheap over the counter in european countries. The above link is the cheapest i have been able to find online?
     
  4. justy

    justy Senior Member

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    Hi Mermaid - I found that seeing a medical herbalist helped strengthen my immune system enormously. (not a regular herbalist, I would only see a medical herbalist)

    I went from having 3- 4 lung infections a year that had to be treated with antibiotics every time to one every two years in fact the last time I got a cold and cough it didn't develop into anything more nasty and I didn't have to take antbx. A real breakthrough for me!

    I think the things she used were ashwaganda and some other things that I cant remember the name of. I find herbs can be very useful if they are properly prescribed and the dosages are right. Like UKXMRV I haven't had any luck trying otc things or herbs suggested by others and tried singly.

    Good luck with this search and great to hear the other things are more under control now.

    Take care,
    Justy xxx
     
  5. mermaid

    mermaid Senior Member

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    Thank you all for your comments....

    ukxmrv - I had to google some of the things you mentioned.
    I did try very high doses of Vit C at one point but it didn't seem to help, and then one of my tests threw up a big problem with benzoates, so I backed down on Vit C as benzoates can be in them (and a lot of other things, some of which are foods!). It didn't seem to make any difference either way. I was just looking at Sambucol today.

    Thank you also heapsreal. Immunovir is something I was able to try for a short time on the NHS via Prof Pinching (now retired). I only took it for 6 weeks, and then I panicked as I got an odd virus with vertigo and wasn't sure if it was a side effect of the medication. I wish I had tried it a bit longer.

    I am intrigued about buying drugs via the internet ukmrv - hadn't realised that you could do this. Is this without prescription? I looked up Valtrex and I see this is re herpes virus. I haven't had any obvious other herpes symptoms (shingles/cold sores) - could it still be related even so....?

    I did read up about MAF 314 at the time, and GcMAF, but they seem v expensive, and v little now about MAF 314 on the net. Also no easy way of obtaining it from what I can see. I know it's not the same, but I do use kefir and live yogurt. Also soil based probiotics from time to time.

    I didn't know what IVIG was but I looked it up. Someone on another forum mentioned it recently and I assume you would have to be referred to an immunologist to get this? ie intravenous immunoglobulin? presumably you have to convince an immunology dept that you need it? I fear that they would not think my issues were bad enough to be referred - low platelets are chronic but not dangerously low, though i did have ITP in pregnancy. I don't get nasty illnesses like pneumonia, only low grade chronic things like colds.

    Justy - thank you for that. I did used to go regularly to a medical herbalist actually until about 5 years ago - helped me through the menopause over 10 yrs ago, and then we moved here, and I saw another one for around 4 yrs on and off. I know she's moved away and maybe we don't have one here any more in Penzance, but I could find out. I have a feeling it might be a 2 hr trek on the bus now, but will consider it again maybe as I am stopping the treatment I have been trying in London due to lack of progress.

    I have had some success with both Oil of Oregano and more recently echinacea which ended a 6 weeks of cold virus for me which is why I have stuck with them for now - but nothing else I have tried has helped (eg I tried ashwaghanda and astragalus).
     
    justy likes this.
  6. ukxmrv

    ukxmrv Senior Member

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    Mermaid, it's been 30 years of this disease for me and I've spent many thousands on trying different treatments many experimental. Glad to hear that you saw Pinching when he was working and had an interest in Immunovir. It's a pity he was never able to offer NK cell testing to see what happened and get a clearer picture.

    Seen decades of different doctors on the NHS and seen change from the 1980's when the NHS tested for Entrovirus infection (VP1 test) and was willing to try the forerunners of the anti-virals and immune modulators on us (Amantadine as an example).

    In the early days we patients used to buy drugs from vets and all sorts of things so when we were able to order drugs on the internet, without a prescription, then the world was much better for many of us. The things I buy are either based on tests (and I've had tests since the 1980's for repeat bouts of CBV, EBV etc, hence the anti-virals, NK cell problems hence the Immunovir) or I buy things that other similar patients find useful. I was lucky in that a patient close to me gave me some MAF314 to try.

    I do know of PWME who have been referred to UK NHS immunologists and are now (re?) diagnosed with specific immune system class deficiency and have obtained IVIG. Mine was through a private doctor although I believe that there are some still in the UK doing IM through injection left (as per Dr Richardson). I also know of NHS patients who have paid for private tests and been able to convince their (NHS but now being seen privately doctor) to prescribe antivirals.

    It's a huge topic and one can spend a lot of time and money on it. UK patients are seeing Professor DeMeirler in Belgium or Dr Enlander when he visits the UK and trying lots of experimental treatments.

    It's hard for me to sum this all into short posts given the length of time, the number of doctors seen, the tests, the results and all the treatments I've done. Personally, I wouldn't spend any more money on herbal remedies because of the money I've wasted in the past which could for me, be better spent saving up to see a doctor, or for tests or try something specific that has science behind it.

    Just my approach and others would have had different and better experiences with the cheap and easy and over the counter. You have been lucky with the ones you mentioned. In my case they either made me worse or had no effect. It's so hard to make recommendations when we all react so differently.

    There is just so much to chose from out there and for many PWME it's a hugely expensive trial and error process.
     
    Last edited: Apr 23, 2014
  7. mermaid

    mermaid Senior Member

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    Thanks ukxmrv - I am sorry to hear that you have had ME for such a long time. It must be disheartening to see where we have got to - or not got to, in all that time.

    Thank you for the summary at any rate, and I totally agree with your last sentence that 'it's a hugely expensive trial and error process.'

    I have already spent a lot of money on various tests which the NHS don't recognise - they do have science behind them but just not mainstream. I will have to think carefully about any direction I go in next, though I have regained some energy and control over my gut symptoms by management rather than cure. Can you get NK cell tests via an NHS immunologist if you pay privately?

    The only mainstream NHS help I have had is via the thyroid issues, and my GP was willing to go the extra mile to help me with that. She also lets me have free use of the surgery for bloods taken for private tests, and also got one of the nurses to teach me when I wanted to inject B12 and magnesium. So I suppose it's possible I could ask to see an immunologist, or I suppose anyone can pay to see one privately? I certainly do have autoimmune issues, re the thyroid, and also Lichen Planus, and possibly ITP, but none of it is considered serious enough for referral (other than the thyroid).

    I am about to get my State Pension this year, and as time goes on and my body ages it seems less and less likely that I can recoup what I have lost, but I would still like to improve my quality of life.
     
    justy likes this.
  8. surethom

    surethom

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    Is acyclovir similer as immunovir for helping the immune system? Or is it just an antiviral, I have antibodies for EBV, CMV & herpies 2. Temp between 36.5 & 37.0Âșc constant feel cold but skin feels hot.
     
  9. maryb

    maryb iherb code TAK122

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    @surethom
    acyclovir s just an a/viral - it will target EBV and HSV 2 not CMV, but its worth a trial as if you can knock 2 down your body may be more able to fight the other one, its cheap enough but I think its a long term treatment. The newer form is Valtrex.
     
  10. surethom

    surethom

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    Hi thanks I have now been on aciclovir (as it is spelt in the uk) for 12 months now for herpes suppression not sure if it is helping or not, but dont want to come of it just in case it makes me worse?

    Aciclovir is the only antiviral the NHS sexual health clinic have.
     
  11. maryb

    maryb iherb code TAK122

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    Do they monitor your EBV and HSV2 levels regularly?
     
  12. surethom

    surethom

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    As far as I am aware here in the uk they do not do levels test just immuglobulin for past infection tests? Unfortunately
     
    ukxmrv likes this.

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