Discussion in 'Fibromyalgia Main Forum' started by mary01, Aug 9, 2010.

  1. mary01

    mary01 New Member

    Hi, everyone. I have tried many treatments over the past 7 years and have had a good deal of success treating pain, sleep problems, depression, adrenal insufficiency and gut problems. I am still plagued with heavy-duty fatigue, pretty severe brain fog, crashes, though these are less-frequently associated with feeling like I'm dying.

    I am wondering about trying anti-virals and would appreciated feedback from anyone who has tried them for EBV, HHV6 and CMV.

    All the best to all of you,
  2. spacee

    spacee Member

    For me, not much luck with anti-virals. Haven't tried the really strong ones though.

    The targeted transfer factors sold here help some people, particularly with those
    viruses. You would need to take both to cover the 3 viruses. You can get more
    info by calling their 800#, they don't print anything about them.

    Hope you find something that helps!

  3. misskoji

    misskoji Member

    I have very high titers to CMV, slightly raised HHV6, and low EBV. I've been taking Valcyte for 8 months. I have noticed some improvement.

    Before that, I took it for 6 months and couldn't continue with the traveling required to see the doctor treating me, though my titers did drop during my treatment. I don't recommend that at all, however. HHV6 can build resistance easily and not taking AVS consistantly will lessen thier ability to work. Also, you need to be monitored closely, as AVs are very toxic and taxing to the liver.

    Not sure where you are located, but I see Dr. A. Martin Lerner in Beverly Hills, MI. I know there are others who treat with antivirals, though they are few and far between.

    Have you had your labs done for CMV, HHV6, and EBV?

    Let me know if I can help any further, and I wish you the best of luck.


    [This Message was Edited on 08/09/2010]
  4. mary01

    mary01 New Member

    Hi, jaminhealth

    Thanks so much for the info on the Olive Leaf Extract and the Grapeseed. I did take the Olive Leaf awhile back for gut infections. I pick it up again.

    Thanks too for the tip on the Grapeseed Extract. I just ordered some and was wondering how much to take. I'm so glad to hear that it helps fatigue, blood and overall health.

    Thanks for taking the time to share this with me.

    Take care. Peace,
  5. heapsreal

    heapsreal New Member

    Famvir is an antiviral which is only used for shingles and type 1 and 2 herpes, but has effect on ebv and myself i have cmv and it has helped with this, others who have hhv6 have said their hhv6 titres have dropped using famvir, so its a good safe drug to start off on. I and others havent had any die off reactions but it does take atleast 3 months to notice any improvement and be able to make a proper judgement on it. I used it for 12 months and improved alot but then changed drugs and dosages to save money as its not cheap and i went backwards, all my lymphocytes went up again. I have since found a cheap reliable source of famvir so will be able to afford taking them at the dosages i will need. 250mg twice a day was what i was initially on but may use 500mg twice a day at first and see what happens. If i cant improve much more i will try valcyte for which i have a savings account so i can try and save up for as its eextremely expensive to use for 6 months. Pre antivirals i was struggling to work part time and considering dropping my job altogether but now im able to work fulltime with lots of rest in between, so av's have made me more functional. Im also using cycloferon which is an immune modulator and i have had good success with this, i havent been using it long but so far so good, i have a thread on here about it.

  6. Mikie

    Mikie Moderator

    We don't know which of the Herpes-Family Viruses I have in my system, which reactivates from time to time. We found out by chance. I had to take Famvir prior to eyelid surgery and I went into a complete, but temporary, remission. So, my doc and I decided I should take an AV. I tried the TF's and they are even more effective for me than ABX and/or AV's. Now, I just keep the Acyclovir on hand in case I get run down and the virus rears its ugly head.

    Many of us with these illnesses have chronic, stealth infections. I do not think healing can be achieved until the infections are under control.

    Love, Mikie
  7. heapsreal

    heapsreal New Member

    I agree mikie, the av's just keep the little buggers from rearing their ugly heads. I cant use av's intermittently yet, i crash within a week of going off famvir. Which TF's do u use, prohealth TF200?

  8. allthumbs

    allthumbs New Member

    It is good to know about the transfer factors. Thanks. I also have fluctuating EBV (HHV-4), mid HHV-6 and mycopolasma. I took famvir for 3months a while back. I was in less pain while on famvir and in hindsight, better on it. We are now going to try a longer course of azithromycin. My FF doc suggest that I may start prevnir from Canada in pulsed dosages if my titers come back high for the EBV. I got a lot straightened out with endocrine, but we never addressed the bugs in my system, namely the mycoplasma. I get a bladder infection, sinus or bronchial infection of some kind every 2-3 months.

    I do wonder about valcyte and have read Dr. Lerner's studies. I have read that it can take 18 months or longer for the antivirals to do their thing. My doc also said that some people only feel better when on an antiviral.
  9. Mikie

    Mikie Moderator

    I can't remember which TF's I took. They have renamed them now and the FDA will not allow them to talk about which pathogens are targeted. I took two which covered most everything we are prone to except the mycoplasmas. There is a TF for them but I had already been on Doxycycline for 2 1/2 years and had it under control.

    Titres are useless with chronic stealth infections. The only way to know for sure is PCR DNA tests which are often unreliable, especially if the blood isn't handled properly. Chronic stealth pathogens operate below the immune system's radar, so there may not be much in the way of antibodies. It may take ABX, AV's, TF's and something to get rid of excess fibrin in the blood to get these infections under control. Most docs aren't aware of how infections operate in our compromised immune systems.

    It usually takes several courses of pulsing the Acyclovir before I'm able to go off it again. Mycoplasmas are like Lyme. They can form cysts deep in the body's tissues and reactivate when we get run down. Herpes-Family Viruses, Lyme, and mycoplasmas can only usually be controlled but not gotten rid of permanently. Once we have them under control, the best thing we can do is take really good care of ourselves so we don't get run down.

    Strangely, many of us with these chronic viral, bacterial and fungal infections are not prone to the common cold nor the flu. I read a paper by Dr. Cheney in the library here which describes how our immune systems work. After reading that, I understood why I seldom suffer from anything "going around." I may get something but almost immediately, my immune system puts the smackdown on it and it's gone ASAP. I never get a flu shot because my immune system reacts so violently to them that I get sick from the reaction.

    Good luck to you.

    Love, Mikie
  10. heapsreal

    heapsreal New Member

    hi mikie,
    so do u still find pulsing av's helpful? How long do u use them for when u pulse them. I find the famvir helpful but when i go off of it my cfs symptoms come back within a week. I sometimes wonder if letting the virus reactivate then hitting it with the av's will allow the meds to attack more of the virus that would normally be dormant. I also think of drug resistance doing this as well, but u dont seem to have a problem with this. I am using reduced dosage of famvir 250mg once a day but did start to crash and felt glands in neck becoming painful, i then did a high loading dose of valtrex 2000mg at once then 1000mg 3 times a day for a few days and it seemed to help, i was still taking a low dose famvir as well. I have been having good results with cycloferon but started crashing when i ran out of cycloferon, this is when i added the valtrex for awhile. Im now back on cycloferon which is helping again, i think this is a good find. I ponder the idea of just using cycloferon and use high dose famvir for a few days when i start to crash and get the painfull neck glands.

    Im interested in how u use your av's and treatments mikie, i think this maybe away i could possibly treat my condition. you've been hiding for awhile, good to see you back again.

  11. Mikie

    Mikie Moderator

    Yes, actually I was working part time and just didn't have the energy to do much else. I have retired but waited too long to do it so am trying to get my health back. Right now, I'm fighting recurrent sinus infections. So, I've called the doc for a refill of the Augmentin. I hope I don't have to go in and can just run down to Target to pick it up. I've avoided the netti pot but I guess it's time to give it a try. I have been doing saline snorts, along with Nasacort. But, I digress.

    I haven't had to take Acyclovir for a loooong time until now. I take 400 mgs. twice a day for ten days and go off for two days. If symptoms return (sore throat, swollen lymph nodes) I start another ten-day course. This can take months, depending on how badly the nasty virus(es) have recolonized in my system. I have found, through trial and error, that it is better for me to get right on the AV and not let things go or it just takes longer to clean the virus(es) up. Fortunately, my doc (actually, his PA) is very helpful and respectful of my research and what my docs and I have done in the past. I've always been lucky with most of my docs. If a doc isn't helpful, I kick him to the curb :)

    Good luck to you. You have done more than I have. The only thing I've used is Doxy for the mycos, Famvir or Acyclovir for the virus(es), TF's, and Heperin for the fibrin (now Nattokinase instead).

    Love, Mikie
  12. stschn

    stschn New Member

    I see Dr. Montoya at Stanford and was on Valcyte for 6 months it gave me back about 70% of my brain. After the 6 months I went on valtrex. Nothing helped with the energy level. Life being what it is- both my knee's went out on me and after surgery I'm back to about 20% of cognitive. Not longer able to balance check book or spell and even make conplete sentence because I can't remember words. Doctor has taken me off the Acyclovir that I was on last for 3 months to clean out my system Then I will be going back on the Valcyte. Not looking forward to it at it was 6 months of hell but I want to at
    least have my brain back. So I plan on spending the first months bed ridden but hope to have the recovery I had before if not more as I'll be on if longer this time.

    I was going to be in his new trial but found it just to hard with the comute the doctor appt. the blood drew for him and then another draw for the trial my veins are very small and the had a very hard time drawing blood. I know the trial is very important and will be the largest one done to my knowledge-I heard 1500 people. I feel badly but I have to put myselt first something I've never been good at.
    [This Message was Edited on 11/13/2010]
  13. heapsreal

    heapsreal New Member

    I wish u all the best with your next valcyte treatment trial, maybe u needed to be on them longer then the first time. U have probably heard that others use different av's for a few months before using valcyte and seem to get less die off symptoms. Im on famvir which seems to help me with cmv and i have heard that others have seen their hhv6 titre levels come down with famvir, so its a drug worth trialling and theres no die off reaction that i know of. Please keep us up to date on how u go with valcyte as it is a drug im looking at using in the future if i can afford it.

  14. monte19

    monte19 New Member

    I have been diagnosed last year CMV, EBV with monlucleoses symptoms. I have been taking Acyclovir 800mg twice a day and Immune Globin (Gamastain) injections once a week and I have been feeling much better. My energy is not perfect yet I can do more things now. And yesterday I found that I have shingles on top of bother my feet. No blisters and now I am being referred to a infectious disease doctor and I already have a hemo/oncology doc. who has done great for me. I don't know what to expect that I have more than two herpes virals it is in Gods hands. The Acyclovir is 13.00 dollars a month at Rite Aid and I have a members card. You have to try something to slow down the process of your immune system getting worse and you will deal with more complications. You need a test from a hemo doc. to confirm any virals of the Herpes family first it is worth it. My doc. test for Hep A, B, C. and Aids. I am clear so I will get protection for that. A regular doc. my not be good try a hemo/oncology doc. Or infectious disease clinic. You adrenal have took a hug toll and you got to help it.
  15. thecatswhiskers

    thecatswhiskers New Member

    Hi there!

    Getting a bit desperate here to get my EBV flare back under control this time (I should have taken your approach Mikie and started the AV as soon as I felt the flare beginning).

    I seem to feel ill on the Acyclovir (very drowsy, dizzy and neuro symptoms) but at the same time it seems to help dampen the virus down! I'm better if I take a small dose 100mg/ 3x daily rather than the 400mg/3x daily originally prescribed. I was seeming to improve very slightly and slowly using this approach ..... Then I came down with a bad cold just before Christmas. I then decided to try Imunovir 500mg/3x day (the first day of the cold) for a week, then 1000mg/3x day for the following week. Have done that, but the end of the 2nd week, although the cold was gone I came down feeling EXTREMELY exhausted again, feverish and my glands painful in my neck, groin and underarms. I've been having 3 days off the Imunovir (as I know it's best to pulse it), but I only feel marginally better. I'm wondering now whether I could combine a low dose of the Imunovir with a low dose of the Acyclovir?! Has anyone done this?

    Also has anyone tried natural thymus extract?

    As I have autoimmune conditions I'm best if I take direct acting antivirals or Immunomodulators. I'm still trying to pluck up the courage to take Cycloferon Heapsreal, but I have such bad sensitivities to meds (especially when Im in a bad phase) that Im a bit scared! My Dr wouldn't back me up on it as she has no knowledge of it. I'm far more of the 'suck it and see' (brave) approach when my health is better generally!

    I'm back staying at my parents at the mo (3months now) and desperately want to get better to move back to my own home. Live on my own though and couldn't cope doing the necessities like cooking at the mo.

    Is it 'normal' for the EBV flare to come vack with a vengeance again because of the cold I've had? It first flared up about 5 months ago after a bout of severe stress and prolonged gastroenteritis.

    Also Heapsreal, which is the cheapest sorce of Famvir you've found that doesn't need a prescription. After peoples good results with it here Im tempted to try but my finances are severely stretched at the mo.

    Is it OK also (Mikie and Spacee) to take TF's at the same time as antivirals or does each cancel the other out?!

    I was finding Virastop a GREAT help previously but even that doesn't seem to be helping at mo!

    Thanks gang ..... And sorry for all the questions!!! :)

    Happy New Year and the bestest of wishes to you all for your health in 2011.

  16. heapsreal

    heapsreal New Member

    Immunovir is suppose to work in a similar way to cycloferon, that is increase our own production of interferon which is antiviral and anti-inflammatory effects. Theres more people on pheonix rising board using cyclo and seems to be helping most. for famvir seems to be quite good and is who i order from and they have been very reliable to me, the trick is to order something cheap then give it a few days then order the famvir, after 2-3 orders u get 15% discount and after 4 u get 15% discount or 30% more pills. The discount is worth it on things like av's as they are pricey, famvir is $289 for 60 tabs 500mg each and i use 250mg twice a day so lasts me 2 months, plus extra 30% more pills thats another 20 approx. I have used valtrex and famvir together when in a crash and it seems to help more but just my personal judgement.

  17. thecatswhiskers

    thecatswhiskers New Member

    Hi Heapsreal!

    Thanks for that info, the link and the money saving tips ... It's much appreciated! :eek:) Have decided to take a low dose of acyclovir and imunovir together at present, then see. In the meanwhile will look into getting the famvir or maybe the cycloferon, I will research the posts on the other site you mentioned.

    Thanks again. Glad to hear you're doing good on your combos .... Keep up that progress!