Valtrex or Av's effect on the body

Discussion in 'Fibromyalgia Main Forum' started by chrisy8, Mar 3, 2006.

  1. chrisy8

    chrisy8 New Member

    Hi everyone,

    I am on 3 gramme of valtrex since two weeks. I feel awful, fatigue, disey, weakness, etc.. I have hard time standing up or walking even inside the house feel my legs and all my body so weak, and very fatigued.

    Is anyone had this feeling or any other while being on Valtrex or other kind of AV.

    I have CFS since 11 years and also, positive EBV and HHV6 for more than one year, my white blood cell counts and NK are so low since also more than one year as well

    I am wondring if I should stop or even cut down Valtrex dose.. please would appreciate knowing about your experience with this drug. it will help me may be to take a decision.

  2. Juloo

    Juloo Member

    I took Valtrex for a little over a year -- at first, the same 3 doses as you, and later, down to 2 doses a day. I'd taken Valtrex once before -- for shingles.

    My most immediate reaction was to have my mild FM pain go pretty much *completely* away. It was a double-blind drug study, but I was convinced that I had the actual drug. Two months later, I found out that I did.

    Well, the pain has not returned in any real capacity, but my EBV levels were still very high. When I started w/the FFC in late fall, the doctor took me off Valtrex and put me on Famvir.

    Famvir has really done a number on me -- not in the way you describe, but definitely has chipped away on my energy levels. Last week I was convinced I was having a major herx from it, but now I'm not so certain. It lasted about six days, and I slept every moment I got. Then the sleepiness just went away, and now I'm back to 'normal'.

    I don't know if your antiviral is causing your symptoms, but medicines can cause reactions, and I can't imagine that it is not possible that yours *might* be caused by the antiviral you are on.

    I hope you figure it out and feel better soon. Could you call your doctor and ask? I do know that the old line "you're gonna feel worse before you feel bettter" really does apply in CFS and FM therapies.
  3. Mikie

    Mikie Moderator

    Every time I have taken anything which kills pathogens, I have had a strong immune reaction with fatigue, swollen lymph nodes, headache, and sore throat. If enough pathogens are killed off, I have a Herxheimer Effect with profuse sweating and diarrhea from hell. This is all normal; however, you should probably call your doc just to be on the safe side.

    Love, Mikie
  4. chrisy8

    chrisy8 New Member

    Thanks everyone for your reply, I actually stopped valtrex since 3 days, couldn't continue no more, tried to reach my doctor but he did not answer yet unfortunatly,

    Anyway, I would like to ask about Transfer factor, I read about it on these forum, I have few questions for people who tried it.

    I understand there is more than one product, one of them is to boost the immune system like NK and i guess white blood cell, there is other product with patogene to help get rid of viruses. I actually have low white blood cells and Nk. and also EBV and HHV6 virus.

    1. Which product shall I take for these things?

    2. Can i take more than one product at the same time, like the one that boost NK etc. and one with patogene for my virsus. and if not which one shall I start with, is it more benifit to boost the immune system and then try to get rid of the virsus or the other way around?

    3. Where do we buy these TF, and is anyone can buy it or do we need Rx from a doctor? and who can give me advice about which product to take?

    4. How long should we usually take them? is it for lifetime?

    5. What is the cost of the TF, I guess that insurance does not pay for those things?

    I would appreciate any information about it, i already spoke with my doctor about it before taking Valtrex, and he did not seem to give me much of his opinion, it seems he did not know much about it.

    Thank you so much for your replies.
  5. chrisy8

    chrisy8 New Member

    hi lovingheart,

    you are saying you are taking 2 a day, what is your dose by gramm, is it 2 gramm or 2 x 500, means 1 gramm... I was taking 3 gramms a day so the dose is really much higher and what i felt is feeling very weak that i can't even stand up much or walk normally, also I felt much more tired than usual and very dizy. I stopped all of it since 3 days and still feel very weak.

    and yes I am talking about these tranfer factor, the type you are taking what is it for? and who suggested you to take? and how do you find it?

    [This Message was Edited on 03/07/2006]
  6. Mikie

    Mikie Moderator

    It might even be longer. I bought the TF C and TF 200 here but I don't think they sell the 200 anymore. It's the one which targets HHV-6, both strains. The FDA has cracked down on what websites can say about their products. You could call ProHealth to ask.

    The TF's caused a much bigger immune reaction and Herxing than any of the ABX or AV's I've been on. Only the Heparin injections caused a worse reaction. The reaction to the TF's was so strong that I was only able to sprinkle a bit of the capsule contents under my tongue the first month on them. After a month, I was able to take whole capsules.

    I took the TF's for three months and then started pulsing them for a couple of days every six weeks. I am just finishing up my reaction to pulsing them. The immunity from the TF's isn't permanent and one has to boost them every four to six weeks.

    I think the TF's are an excellent way to treat pathogens and had I known about them earlier, I would have used them because instead of just killing pathogens, they train the immune system to recognize and kill them itself.

    Love, Mikie
  7. Hootie1

    Hootie1 New Member

    I am taking valtrex also. My targe goal is 9- 500 mg (4500) per day- I am at 5- 500 (2500). I have been very slowly adding one pill per week- started with only 1 per day. I only add them when I feel stable. I don't know if I will be able to get to 4500, but we'll see. I also need the supervirals which make me extremely sick for days, but those I only have done once every 3 or so weeks. I wait to see how I feel before I do it. I have about 4 more to do.

    I've had to start slowly with everything! My system is extremely sensitive. I have not yet added in the TF, but that will come. I am not being treated yet for the cpn, mycoplasma, candida yet, but that will come later.

    The key is- go back and start slowly- this would be my advice.

    Don't give up - if you can help it- just go slowly so that you can feel some successes.

    I'm not sure whether the FFC protocol is totally correct either, but it has been very similar to many others and is the best I've got. I have not been feeling the flares like I used to, which is good. I basically know lately when I will be sick (mostly herxing) and this is the day after I increase the dose. I keep this for Friday night so that I can recover over the weekend and not take as much leave from work.

    You can do it. Keep me posted- I'll be thinking of you.

    I'm editing this because I forgot to mention that I also have HVV6 and EBV- past and present at the time of the bloodtest. I also recently tested high for lead. If I need to treat for that - I will need to fit it in some how.

    I've started a binder with tabs in order to stay organized with everyting. I also print some of these posts per subject so that later I can refer to them- it helps! I keep my son's school info, camp info, medicines, insurance info - everything- it helps.
    [This Message was Edited on 06/04/2006]
  8. Pianowoman

    Pianowoman New Member

    I just want to mention a couple of points re the transfer factor. I don'tknow if you are thinking of taking it along with your anti-virals but it is generally thought not to be a good idea. The TFs contain live viruses which could be killed off by the AVs. I have heard that a few doctors prescibe them together but the TFs are quite expensive if there is a chance they might not work.

    There is a transfer factor board here with a lot of great information, although it has not been used as much lately. Also, there is a PH site with some specific info. about the transfer factors, including a graph about which ones target which pathogens.

  9. ulala

    ulala New Member

    gave you good advice. If you started at 3 grams of Valtrex that is probably too much for you. Try starting with the lowest amount you can and gradually work your way up.

    Hopefully that will work for you. Good luck!
  10. Mikie

    Mikie Moderator

    Just to further clarify the TF's and live viruses--only the "transfer info" from the live viruses is removed and used to make the TF's. They do not contain live viruses. It is this transfer info which our immune systems are supposed to recognize so that they will kill the pathogens.

    The TF's carry far less risk than vaccines which are made from weakened viruses.

    Antiviral meds can made us feel really sick. I tolerate Famvir but my ins. co. won't pay for it. I've tried the Acyclovir and it makes me feel really crummy. It's not an immune reaction or Herxing; it's the med. I only take the Acyclovir now whenever I feel I have a virus or the TF's and my own immune system cannot handle it.

    Some docs will prescribe an AV along with the TF's but I'm not sure it's not a waste of money. The AV's may destroy the transfer info before it has a chance to train the immune system. I do think it can be helpful to us an AV first to lower the viral load and then switch to the TF's. Just my opinion.

    Love, Mikie
  11. chrisy8

    chrisy8 New Member

    Thank you all for the advices, I actually stopped the valtrex few days after I wrote the message and that was about 3 month ago as I could not tolerated.

    Hootie as I also read in one of your messages, as you said I think it was not too good for my liver as my eyes turned yellow and also the fatigue i was feeling, unfortunatly my doctor never mentioned any thing about this and i think he does not know much.. also I would like to tell you that i did a blood test after 2 weeks of using valtrex and my white blood cell went a way too low... so be carful with that too, I guess valtrex acts sometimes harshely on the white blood cells and i guess it is important to check that regulary while taking the medication. So please be carful with this really high dose that you are taking.

    I actually not taking anything at all, I am just trying to rest, but off course it is not going any better. but a lot of medication and even naturel med. that my body can not tolerate and also having mild to very severe rashs all over my body since a long while and nobody seems to know why or from what exactly, is it from medication, food, virus, physical stress or other problem that I don't know of.

    Anyway I just wanted to share with you all my experience, it might be helpful for someone.

  12. Hootie1

    Hootie1 New Member

    wow- that was a bad reaction! I'm up to the 4500 dosage. Although, when I get the superviral I don't take any because I get super sick from the IV and know that the valtrex can't be good on top of that.

    Thank you for your warning- I will continue with caution. I was just at the doctor yesterday and forgot to ask about the testing during the time that I am taking the valtrex.

    The valtrex has been very tough, I've been continuing to work but have had to take days off here and there- more than usual.

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