Immune help

Discussion in 'Fibromyalgia Main Forum' started by thecatswhiskers, Sep 19, 2010.

  1. thecatswhiskers

    thecatswhiskers New Member


    I have long standing immune problems with my M.E. (like most of us!). After a very stressful 6months in my personal life Ive suffered 3-4 weeks of gastroenteritis, followed by a return of my EBV symptoms which Im still really struggling badly with at the moment (painful glands, dreadful hot flushes, sore throats, earache, exhaustion, depression etc).

    I wonder what people have found to be the most useful to help them at times such as this? Are there any herbs/messs that have particularly helped?

    I take Virastop 2x (twice a day) and have done now for about a year and it was really helping but everything seems to have gone wrong with my health lately. I also take lots of vitamins/ minerals etc.

    Thanks in advance for any help you can give :)
  2. heapsreal

    heapsreal New Member

    I havent seen u on here for ages. I have just started a product/med/supplement called cycloferon which enhances your own immune system to help fight things like herpes virus eg ebv etc as well as viral infections in general. I have only been on it for a few days, its still early but im feeling alot better of late, im also on famvir an antiviral which has helped me alot but have added the cycloferon to get that bit extra and maybe go off av's and just use cycloferon as its cheaper. It seems to be a product used alot in the eastern block countries. Cycloferon seems to work in a similar fashion to imunovir but i have found it to be alot cheaper. heres a few links for u to read

  3. thecatswhiskers

    thecatswhiskers New Member

    Nice to hear from you again on here ..... I know, I've been a bit quiet lately! I bought and moved out into a place of my own which then kicked off a whole (very stressful!) chain of events so didn't have a lot of time/ spare energy for posting on here :(

    Aw, thanks so much for that info, I'm going to read up on it now. Do you know if it's alright to take of you also have autoimmune problems? It might say in the reading on it though so read I will!

    How are you doing these days Heapsreal? We need to slay these blessed viruses don't we!!!!

    Kind regards.
  4. heapsreal

    heapsreal New Member

    Yes moving can cause a crash, its happened to me in the past too, just have to try to rest up. Im not sure on cycloferon with auto-immune problems, it may help with those but i would look into it more.

    My cfs was doing really well on antivirals, then i changed to a different av for cost reasons and went backwards, blood tests results also showed this. but now back on my original av, famvir and improving again, im using cycloferon to help try and get that bit more improvement. time will tell
  5. mbofov

    mbofov Active Member

    Well - here's what has helped me. First, you mention a very stressful 6 months in your life. I immediately think of stressed adrenal glands. Pantothenic acid is the B vitamin which is crucial to adrenal health, and pantothenic acid deficiency manifests in part as chronic sore throats and fatigue or exhaustion.

    So if I were you, this is what I would do:

    take a good B complex vitamin (Jarrow B right is a good one)
    Take extra pantothenic acid, very important for the adrenals
    minimize stress
    minimize coffee, sugar and alcohol consumption, all hard on the adrenals
    Consider taking an adrenal glandular extract like Drenatrophin PMG by Standard Process, or Drenamin also by SP. Cytozyme Ad by Biotic is also good. These were very very important for me in strengthening my adrenals.

    For my digestive system, this is what helped me:

    a good probiotic
    hydrochloric acid before meals - this has helped immeasurably with my digestion

    What really really helped me a lot and a lot of people think is c**p, is a chiropractor who does muscle testing. He found my weak adrenals, gave me the Drenatrophin, and also was invaluable in fixing my screwed up digestion. I can't say enough good things about him. If you want to find someone who does this, I suggest you go to the Standard Process website and call their customer service, who will give you the name(s) of practitioners in your area who buy their products. They are a very highly regarded company.

    Good luck and take care -

  6. thecatswhiskers

    thecatswhiskers New Member

    Thanks so much for those suggestions, the glandulars ones for the adrenals really interests me as I think they must have been very stressed of late. I moved out and on my own and also then got into a relationship (and he lived with me for 4 months) with someone who turned out very surprisingly to be very abusive...... So I think my adrenals have been stressed! I finished it and am now back on my own, but now dealing with the 'fallout' I think.

    I do the things like the bvits/ no sugar/ caffeine already, but the glandular extracts really interest me.

    Thank you!
    [This Message was Edited on 09/21/2010]
  7. thecatswhiskers

    thecatswhiskers New Member

    Thanks so much for your follow up. Glad to hear you're improving once again on the famvir ..... These av's can get so expensive though can't they. I hope the cycoferon proves to be the missing part of the jigsaw for you.

    Where do you Get your Cycloferon from? I live in the UK ..... Do you think I can get it online without the input from a Dr?

    Kind regards.
    [This Message was Edited on 09/21/2010]
  8. heapsreal

    heapsreal New Member

    i got my cycloferon from one of the links i sent in this thread, pharmacy 1010 which are located in poland. I didnt need a script and i didnt have any problems with customs in australia which are the toughest buggers to get anything through. I think its classed as a supplement but is in bewteen a supplement and a med, there is an injectable version but i would try the oral route first for comfort reasons, lol. Heres a link for immunovir which is one of the cheapest i have seen and its from the UK but think u need a script for it.

  9. thecatswhiskers

    thecatswhiskers New Member

    Thanks for those links ...... really interested in the UK one too, would just have to twist a Dr's arm to write me a P/X!

    Oral sounds better than a jab if at all possible lol, going to look into both of those now ........

    Thanks again ........
  10. mbofov

    mbofov Active Member

    One more thing - my adrenals were originally so depleted that I had to take about 3 times the recommended dose on the bottle.

    I am very sensitive to meds, and had no bad reaction at all to the adrenal glandulars. And actually felt them starting to work within about 3 days. I had to take them for a couple of months, dialing down the dose after a couple of weeks. They've helped a lot of people on this board.

    Good luck!

  11. thecatswhiskers

    thecatswhiskers New Member

    I've just managed to read up on all the links you gave me for the Cycloferon; it makes impressive reading, so thanks for pointing me towards it. Is says it has 'immunomodulatory' effects aswell as anti-inflammatory effects so it sounds perfect too, if like me you suffer with auto-immune problems also.

    I was surprised at the price .... It's very cheap isn't it (maybe because it originates in the Eastern Block.

    How many tabs do you take/ day and are you doing the 'on and off certain days' regime that was mentioned on one of those links you gave me, or are you just taking it every day?

    Are you generally sensitive to meds or ok? I generally am, so the only slight worry I have is from that angle, but Im defo gonna buy some, take it and hope for the best! :eek:)

    As it's early days for you on it, how are you doing now, still feeling a bit better?

    Kind regards.

    PS. Sorry if you've answered any of these questions previously, I have the attention span abd reading capabilities of a fruit fly at the mo! :)

  12. thecatswhiskers

    thecatswhiskers New Member

    Between you and Heapsreal I'm getting myself on a new regimen!

    The Standard Process glandulars I'm finding difficult to get hold of as it seems a 'membership' type scheme where you eventually have to ring their medical line for a consultation. Being in the UK that would be too costly unfortunately.

    The Cytozyme AD I seem to be having more luck with as it seems accessible through 'normal' resellers so that's the one I'm going to try as you also mentioned that was good.

    Thanks so much Mary! :eek:)
  13. mbofov

    mbofov Active Member

    Keep us posted how all this helps you (or doesn't)!

    FWIW, you can get the Standard Process glandulars from regular sellers without having to get a consultation, e.g., you can buy Drenamin on Amazon and other places.

    But Cytozyme AD is a good product too.

    Best wishes -

  14. heapsreal

    heapsreal New Member

    I take 2 tabs a day every second day, but took tabs the first 2 days when i started off. In the reading material on it, it sounds like its only used for short courses like 6 weeks or so, but does state for other more chronic cases that after the initial course to use it every 3-5 days. I think it might just take a bit of experimental work. Im going to try 6 weeks then have a break for a few weeks then do another 6 weeks. Other immune modulators are used like this to help with reducing tolerance to them.

  15. spacee

    spacee Member

    I've just started Hepasunate. It probably fits more in the antiviral slot.
    So, far, it is not easy to take. Can't be positive up hoping something
    is dying off!

    I am going to make a note of all your suggestions. You kids have done
    some good work sleuthing out things to help.


  16. heapsreal

    heapsreal New Member

    U not having much luck on hepasunate? How long have u been on it for now? The eastern european immune modulators in links i sent to whiskers look interesting, arbidol, immunofan as well as cycloferon which im using now look like they would be of use to use as they have effect on exactly whats going wrong with our immune systems, our natural killer cells. THey all seem reasonably priced as well, not like immunovir which is very expensive. Spacee have u used immunovir in the past? i havent tried it, but if i can get a cheap source i wouldnt mind giving it a go. So far the cycloferon seems to be helping, more stamina and head feels clearer, but i am using in conjuunction with famvir which is also helping.

  17. thecatswhiskers

    thecatswhiskers New Member

    ........... for your dosing guidance.

    Will let you know how I go and I hope you continue improving.

    Spacee has made me think about the Hepsunate too, as I have been prescribed artesunate (for lyme) that I've not yet taken.
  18. GeminiMoon

    GeminiMoon Member

    I have had EPV for 20 years and have tried about everything! I have resigned myself to this disease and have learned how to pace myself and recognize the warning signs.

    As soon as I feel the viral symptoms coming on, I immediately take a homeopathic remedy called Oscillococcinum. You can get it at any health food store, Vitamin Shoppe, even Walgreen's! Here is their site:

    Oscillococcinum Official Site : Natural Flu Medicine by Boiron
    As soon as you start feeling run-down or have other flu-like symptoms, take Oscillococcinum.

    I take as directed and it really helps me. I swear by it!

    I also take 1 Cymbalta each morning for energy & 1 Trazadone each evening for sleep.

    I take a pretty large amount of other vitamins also; multiples, B-complex, Vit. C, Calcium-Magnesium, etc. and try not to wear myself out. It really takes discipline, but it all really does make a difference.

    Hope this helps!
  19. thecatswhiskers

    thecatswhiskers New Member

    I'm still looking into these adrenal extracts (taken me a long while I know, but it's the illness).

    What's confused me is that when I was going to buy the Cytozyme AD (still having trouble buying the SP stuff from the UK) it said this about the symptom indications;

    "Cytozyme-AD (Adrenal): Neonatal bovine adrenal glandular with SOD and catalase from vegetable culture. Lots of people who need this product seem to think that they need coffee! Generally best taken early in the day.

    Cytozyme-AD usually tends to be best for exhausted persons who fall asleep easily, while ADHS usually works best with those who need to wind down before sleep. Some people may need to alternate between them during different periods"

    I don't have that 'coffee needed/ wake up feeling. I'm extremely exhausted, but at the same time I get quite 'wired' feeling. That wired feeling gets worse the more exhausted/ ill I am, I'm much more relaxed and sleep better when I feel better. In the past I've had a test for cortisol which was high, and DHEA low (cosistent with stage 2 adrenal fatigue I think upon reading). I didn't want to take something that might make that wired/ anxious feeling worse. I somethimes feel shaky too (bit like when you're blood sugar is low) and get worse hormonally.

    I wondered what your symptoms were before you started the Drenatrophin? Were they more consistent with mine or were you the kind of fatigue that you just slept and needed a caffeine type boost?

    Be really grateful for your input, as I want to crack this worsening I've had and get on top of things a bit again.

    I've also read that ashwaghanda is good for the adrenals/ stage 2 adrenal exhaustion so am going to try that.

    Kindest regards
  20. mbofov

    mbofov Active Member

    My fatigue has never been helped by a caffeine boost and if your adrenals are weak or you hvae high cortisol, coffee is one of the worst things you can do. Anyways, I was much more like you. It would probably be best if you could see a naturopath or a chiropractor who does muscle testing who could help you with this.

    I just looked up the ADHS and it is not an adrenal glandular product - it just has vitamins and minerals and a few herbs, which I am sure are good, but it was the adrenal glandular products which really helped my adrenals.

    It also does sound like your cortisol levels are high, your wired feeling when you're tired, all the stress you've been under, your high levels in the past - my cortisol levels were high in the past and I was given Seriphos (phosphorylated serine) (non-prescription) which worked really well to normalize my levels. I started sleeping better and also felt calmer but not drugged. Did you ever take anything for the high cortisol?

    But I also needed an adrenal glandular product at various times. I have taken both Seriphos and an adrenal glandular at the same time, although it would best to only try one at a time to see how you do.

    I can't really advise you what to do here - it really sounds like you have two things going on which are related. It would be good to have your cortisol levels retested and if they are high, then start the Seriphos. It does work very well for high cortisol (with no bad side effects! if taken in the morning), but if your cortisol levels are low you shouldn't take it. I had to start with 8 capsules a day (rather a lot), in divided doses in the morning and after several months cut back.

    I have also needed an adrenal glandular at various times, but I'm guessing you should address the high cortisol issue first. If you could find someone to help you with this, that would be best.

    Take care -