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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. W

    13th week of Valcyte

    Interesting. I asked about how long you would potentially have to be on something like Ritiximab if the trials were to prove successful and was told it was too early to tell at this stage. Guess we will just have to see how it pans out.
  2. W

    13th week of Valcyte

    Isn't Rituxan the same as Ritiximab? If so this is the drug that is being tested in the netherlands for CFS sufferes. I was speaking to my Immunologist about this the other week and he said it has already been through double blind placebo trials and is looking very promising as a potential cure...
  3. W

    Increasing Famvir Dose

    Sorry to hear your feeling crappy. Its hard enough dealing with all the usual symptoms without having to deal with catching other bugs. I've seen very few online pharmacies that sell Generic Valcyte, but then i'm not surprised that you've had difficulties sourcing this as it is quite a toxic...
  4. W

    Increasing Famvir Dose

    I think allergies can give the immune system a hammering. As well as sinus problems i also have had some skin allergies as well, itching and eczema, which i have never had before, plus dark circles under my eyes which i have read can be down to allergies as well. Seems that a lot of people...
  5. W

    Increasing Famvir Dose

    Well good luck hope it helps. Though sounds like you might have something else going on there. Have you been tested for allergies? Pretty common with us CFS'ers. I've been plagued with sinus problems with the past few months which have been driving me nuts. Have been on antihistamines for the...
  6. W

    Increasing Famvir Dose

    Hi Heapsreal, has your doctor put you on valcyte because the famvir is not working for you? Have you had your titres checked?
  7. W

    Poor man's GcMAF?

    Breakspear hospital, here in the UK, advocates the use of probiotics to help modulate the immune system. Here is what they say: "Breakspear also now has available a bacterial product, known to help modulate the immune system. This bacterial product is a high potency probiotic preparation that...
  8. W

    getting worse from imunovir?

    Thats great news that you have done so well on Imunovir. Out of interest when you started taking it, how long did it take before you noticed your symptoms getting worse?
  9. W

    getting worse from imunovir?

    Its great to hear that you've found success with Famvir. I've found previously that i haven't needed to stay on a/v's for an extended period though i have used a maintenance dose in the past or taken them when i feel symptoms coming on. Hadn't taken them for about a year at the point i relapsed...
  10. W

    getting worse from imunovir?

    I have EBV. My CFS was triggered by Glandular fever. I have had very good results with Valtrex previously, I had over 2 years very good health following treatment with valtrex, but relapsed again in august of this year. My health had been improving this time around, with some noticably better...
  11. W

    getting worse from imunovir?

    I've been on Valtrex for 2 and a half months now. Think i'm going to avoid the Cycloferon for now and stick with the Valtrex as you suggest. Am also taking Astragalus and Coriolus which are supposed to increase NK cell function.
  12. W

    getting worse from imunovir?

    I decided to give Cycloferon a go which i believe is similar to Immunovir. Took 2 doses last week and really wish i hadn't now! I took 2 tablets on the first day in the morning, by the evening i felt light headed and had a little bit of pain in my chest but didn't put it down to the tablets...
  13. W

    Generic Valtrex - Differences?

    To be honest i think 4g a day is overkill. I do fine on half that (2g a day) and could prob reduce it to 1.5g a day as i get good results from lower doses but i guess everyone is different and some people need higher doses. I would start off low and then build it up. I started at 1g a day and...
  14. W

    Testing for EBV

    I saw my doctor yesterday and asked about the blood work that i had carried out recently. My full blood count shows mylymphocyte count as 1.9 x 10 9/l. Normal reference range is 1.5 to 4.0 x 10 9/l. So i am in normal reference range but on the lower end of the scale so I don't know if that...
  15. W

    IMUNOVIR? vs CYCLOFERON?

    Yep i totally agree with you there is no such thing as a single bullet cure and what works for one person does not necessarily work for another. My last major flare up in 2007 i tried many different therapies and treatments, at great expense and great frustration. A/V's were the only thing that...
  16. W

    IMUNOVIR? vs CYCLOFERON?

    For anyone living in the UK, i have found what appears to be a good source for purchasing Imunovir. http://www.assetchemist.co.uk/search.php?q=imunovir They are a UK pharmacy and it appears that you don't need a prescription for this either. Though if you do they can provide you with one...
  17. W

    Testing for EBV

    Thanks very much for the info Heapsreal. We don't seem to have the titre tests here in the UK either, my G.P requested them from the labs last time i was ill and all she got back was a very basic result. I've not heard of a lymphocyte test before. Here in the UK we have a White Blood Cell...
  18. W

    Testing for EBV

    Just wondered if anyone can give some advice regarding testing for Epstein Barr and other Herpes viruses. I have in the past had blood work done, but the results apparently show that i have had a past infection with EBV, which of course i already know as this is how i got ill in the first...
  19. W

    Generic Valtrex - Differences?

    Thanks Heapsreal If anyone is thinking of using Valcyte, please make sure that you consult with your Physician first (as with any treatment). From what i have read it can be quite toxic for some people and have a suppressive effect on the immune system if used for prolonged periods, so you...
  20. W

    Generic Valtrex - Differences?

    ukxmrv, out of curiousity where abouts are you in the UK and what consultant are you seeing?
  21. W

    Generic Valtrex - Differences?

    I've done some research and it looks like Imunovir is prescribed here in the UK and whatsmore it is available on the NHS which is even better. Whether it is licensed for EBV/CFS i have no idea but my G.P is usually quite willing to prescribe short doses on an "off label" basis which is how i got...
  22. W

    Generic Valtrex - Differences?

    Wow that place is ridiculously expensive for Valtrex. I have used www.generic4all.com which seem pretty good, they are a little more expensive than 4rx ($189 for 90 1 Gram tablets) and they do stock Cipla. I paid for EMS shipping and it tok 6 days to reach the UK. Though they quote registered...
  23. W

    Generic Valtrex - Differences?

    That's good to know that the Cipla you ordered from them worked UKXMRV as was getting a bit worried that the pills they supply are not what they should be. "Contacted 4RX and asked them to supply Cipla instead and they managed to do that until recently." - Does that mean you have had...
  24. W

    Generic Valtrex - Differences?

    Thanks for the replies. SickofCFS - I've not come across the Mylan and Teva brands. Where do you get these from? Heapsreal - I've actually tried Famvir in the past and had a similar effect as i did with Valtrex. It works out more expensive than Valtrex which does work for me as long as i...
  25. W

    Generic Valtrex - Differences?

    I've had great success with taking Valacyclovir both the branded medication (Valtrex) and also the generic version from Cipla (Valcivir). Recently i purchased some generic Valtrex from www.4rx.com thinking it would be the Cipla version, however the tablets they sent me were a product called...