Mikie ... Pulsing AV's ?

Discussion in 'Fibromyalgia Main Forum' started by elsa, Sep 11, 2005.

  1. elsa

    elsa New Member



    It has been a year since I last took famvir. If I was to re-up my rx, what pulsing schedule do you suggest? Also,
    how long should I stay off of TF while on AD or do I go off of TF at all? ( I'm not at the pulse stage yet of TF.)

    I appreciate any insights you can give me. I hadn't though about a maintainance program where AV are concerned, but it certainly makes good sense. With winter coming, I want to get as strong as I can get.

    Thanks for your response on the other post. That's what got me to thinking along these lines.

    Talk soon,

    Elsa

    P.S. Did you "feel" anything while taking heparin besides
    maybe a better AV/TF response? I.E. injection site, etc.
  2. Mikie

    Mikie Moderator

    I have read that where pathogens are concerned, the more you can keep them off balance, the better. That is the theory behind pulsing and even changing meds now and then. I don't think there is a specific schedule for the AV's. I would think that after an initial time on the AV's, it would be helpful to try to stay off them for two weeks. If symptoms return before then, they should be started again. I would stay on them for six weeks and then try again. Eventually, one should be able to be off the AV's longer and longer. If one gets run down and the viruses reactivate, the AV's should be restarted. It's all trial and error with this stuff. It's important to have a doc who understands this and allows you to take control of your own dosing.

    I really think that if one is doing well on the TF's, the AV's are only needed for reactivation. I wouldn't take TF's while on AV's as I think they AV's destroy the transfer info contained in the TF's. Some docs tell patients to take them both at the same time, but if you think about it, the transfer factor info is derived from live pathogens and inserted into the culture medium, usually colostrum and/or eggs. It is this TF info which catches the attention of the immune system. If AV's can kill viruses, I'm pretty sure they can wipe out the TF info before there is an immune response, necessary to train the immune system.

    The Heparin elicited an even stronger immune response than did the TF's. I retained fluids to the point that I had to take a diuretic. My lymph nodes swelled up horribly. I felt awful with headaches, body pains and just feeling fluish. The Heparin works fast and exposes a ton of pathogens in the blood stream. The immune system goes into overdrive. You can take AV's and ABX with the Heparin. That will produce huge Herxing. You have to be a bit careful about not producing a toxic-shock-like situation. It is rare, but it happened to Tansy. She was very ill.

    You can also take the Heparin with TF's. I had pretty much finished with the Doxycycline when I went on the Heparin but Dr. Brewer usually uses them together. I used the Heparin with the Famvir. Now, all I use is the TF's unless I know something has reactivated. Then, I use the Famvir. It is so expensive that my new doc wrote out an Rx for Acyclovir which has a generic. I haven't filled it yet. I probably have one more pulse of the Famvir left on hand.

    I'm not sure that there is a specific dosing period which fits all. I think we each have to do what seems to work for us. I remember when Dr. Nicolson developed the protocol for mycoplasmas. He had people taking the Doxy for three months and then trying to go off it for two weeks and back on for six. No one with mycoplasma infections gets better before six months on the ABX, so the treatment protocol was changed. Now, he recommends taking the ABX for six months before trying to pulse them. We learn as we go along.

    I know this sounds like groping in the dark and it really is. Those of us using these treatments and addressing our chronic infections are the ones who will help define the treatment for the future. I believe it is important to get the infections under control. Heparin helps with this and it can be taken with ABX and AV's. It can also be taken with TF's. The only thing I would not combine is AV's and TF's.

    Hope this helps. It's pretty much based on my own experience and Dr. Brewer's protocol.

    Love, Mikie

  3. elsa

    elsa New Member



    Sometimes I wish I could click my heals and have all
    this planned out for me! Having a little understood illness that affects so many different systems is tough!

    I'm feeling well at the moment. Haven't had any low grade fevers, swollen lymph nodes or sore throats in a very long time. If I followed correctly, I don't really need any AD treatment. I'll stick with my TF for the time being. I haven't been on them long enough to start thinking
    of pulse doses....

    Actually, only the original round of colostrum produced
    any significant herx reaction. After that I've had one stretch of fluie like feeling, but not bad. I think I'm on the lucky side.

    Thank you for the heparin information. I am currently in the early stages of addressing my hormones and balancing
    brain chemicals. Quite a handful in itself. Man ... no rest for the Chronically Fatigued huh!? ( Pun intended )

    Thank you again for taking the time and effort to share what you know. I agree that what we come up with now will make future sufferer's travels through treatment a bit smoother.

    Take care,

    Elsa
  4. Mikie

    Mikie Moderator

    I'm glad you are feeling fairly well. It can be rough on these treatments. I don't have experience with antidepressants except for Elavil. I decided not to use them.

    As you know, what makes it so hard is that when you tweak on thing, it affects everything else. Also, what works for a while may not continue to work forever.

    This pulse has not made me feel as bad as they usually do, perhaps because I had just been through a Herx. My lymph nodes are swollen and I am hot and sweaty but at a lesser level than I normally experience. If the diarrhea would just come, I feel I would start to feel better.

    You are right; there is no rest for us :)

    Love, Mikie
  5. bpmwriter

    bpmwriter New Member


    do you think the same logig re: taking TF and AVs together applies when taking the TF Essenstials (no specific pathogens are targeted)? the way i understand, the TF Essentials doesn't actually contain any pathogens so the AV shouldn't interfere, yes? it's standard protocol at the fcc to prescribe the TF essentials and AVs at the same time.
    wondering what you opinion is.

    eddie
  6. elsa

    elsa New Member


    Maybe you are getting better, resulting in less herx
    reaction? Wouldn't that be something? You've certainly worked hard towards it.

    Like you, I am very respectful of AD's ... I had experiences with them several years ago for off label
    PMS. Yeah, ... right, ... not again in this lifetime. I do however believe AD's have done great things for individuals battling depression.

    I am working on balancing the neurotransmitters naturally with amino acid therapy. It is quite interesting and logical to me. The neuros get terribly depleted with CFS/FM. The depletion can be traced directly to the adrenal gland disfunction ...as well as the overworked immune system.

    Many of the typical CFS/FM medications do a number on them too. The AD's themselves eventually deplete the very
    neurotransmitter(s) they are designed to treat. They prevent the re-uptake, but do nothing to encourage new
    production. The original supply wear out ... breakdown...
    resulting in the patient feeling bad again. The alternatives are to either raise the AD dose or switch to a different type of AD.

    Like many other health philosophies, balance is the key.
    Not easy to achieve with a chronic illness and may be a
    life long endeavor. The tramadol I take is constantly involved with serotonin ... so, dopamine, here I come!

    I have been blessed with a primary care doctor who believed in me from the very beginning and has kept me "glued together" throughout this. However, I feel it is my MD/Natural Health doctor who is helping me address the
    underlying problems and attempting to bring them back into balance.

    Take care ... I've enjoyed talking treatment protocals and theories with you. I surely wish I never heard of CFS/FM, but I do find alot of the information fascinating.

    Elsa


    [This Message was Edited on 09/12/2005]
  7. Mikie

    Mikie Moderator

    Eddie, I agree; I should have been more explicit. It is only the TF's which contain the transfer info from live pathogens which I do not believe should be taken with an AV or ABX if the TF targets bacteria. TF Essentials is really a souped-up colostrum. It is gentler than the targeted TF's and is a good way to build up the immune system.

    Elsa, I agree that AD's do have their place in medicine, especially in cases of severe depression. Dr. Cheney believes that the SSRI's, and undoubtedly the SNRI's, actually cause increased seizure activity in the brain and can contribute to premature death of neurons. He believes the Klonopin protects the brain. Of course, there are other ways than Klonopin to achieve this.

    I am reconsidering weaning off the Klonopin. While it is true that the Klonopin no longer helps me get the deep sleep I require, I suspect it is still helping with the seizure activity. I am restless and a bit more edgy with the reduced dose. I notice that I am easily startled, but I am not suffering from sensory overload as much as I had expected. I've noticed my pain has really increased. I suspect the Klonopin has been helping to reduce the pain messages in the brain.

    I hated to add another drug to my regimen without getting rid of the Klonopin just to get better sleep. I now believe that I should have tried slightly increasing the Klonopin to see whether tolerance was the culprit. I just hate to have to do that. Eventually, I would be up to a dose which would make it impossible to ever get off of it. Tolerance to Klonopin is slow, but I have a lot of years ahead of me unless I succumb to something else.

    The article on cortisol here is just more evidence that weaning off the Klonopin may not be a good idea. If my stress is increased and I am easily startled, my system is releasing adrenaline which causes a cortisol problem. Like I said, everything we do affects everything else.

    I think my next stop is to see an endocrinologist if I can find a good one here. This is one of the last avenues I am looking at for healing. A neurologist is the last avenue I will examine. This all takes so much time. I think that is one advantage of the FFC's; it's one-stop shopping.

    Love, Mikie