Jolie othersNexavir

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Feb 11, 2007.

  1. cherylsue

    cherylsue Member

    Here's a post I lifted from elliespad. Nexavir transdermal gel is now the "new" form of kutapressin from porsine livers.

    Dr. Edward Conley is a CFS doc in Flint, Michigan. He and other CFS docs - Cheney, DeMeirlier, Guyer, etc. are using this with some success. Dr. Cheney said he sees 20-80% improvement in his patients.

    Jolie, Dr. Conley has a webpage with his protocol and phone number Perhaps, your husband can speak with him personally and ask about dosing, efficacy, lenghth of treatment, and side effects, etc. I think this may be a good and gentle RX for you.

    I begin treatment next week.

    CherylSue



    Kutapressin 11/24/06 06:00 AM elliespad posted:

    This is from a newsletter I received from Dr. Conley. Anyone have any experience (or thoughts) on Kusapressin?

    A VALUABLE ANTIVIRAL IS NOW AVAILABLE AGAIN

    Kutapressin is a liver extract that has antiviral activity against many viruses including epstein-barr (EBV), cytomegalovirus (CMV), herpes simplex (HSV), and herpes zoster (shingles HZV). I used to use Kutapressin quite often for the chronic active viral infections that can be part of CFIDS/FM. Many patients in the past have responded very well to Kutapressin injections and since it is natural, the possible side effects were mild. (we will talk about the fact that I have found Kutapressin that is topical: that is applied to the skin, so daily injections are no longer needed). Even though Kutapressin is a liver extract it does not contain iron...therefore is of no help in anemia. What it does contain is amino acids and peptides that have been shown to have anti-viral activity. It has also been shown to have anti-inflammatory activity. Since it is a natural substance (made from pork liver) research has not been conducted on exactly how/why these compounds have anti-viral and anti-inflammatory functions. It has been thought that since pigs and humans get many of the same viruses, the pigs may produce anti-viral peptides that are not species specific and therefore we can use them. In any case, in the past, I have used Kutapressin with considerable sucess in those patients who did not get improvement with oral antivirals such as Zovirax, Valtrex, or Famvir. In 2002 the only manufacturer of Kutapressin stopped making it and it was no longer available. Now however it is back and best of all we are able to have it made into a topical cream that is stronger than the old injectable and appears to work just as well or even better. The topical appears to work better because it builds up a resevoir in the fat of our skin and releases over the course of 24 hours. This gives more consistent release of the medication and better anti-viral activity. Since the shots were just once per day patients would get anti-viral activity for several hours but then would be without any activity for considerable periods of the day.



  2. cherylsue

    cherylsue Member

  3. JolieLuLu

    JolieLuLu New Member

    Cherylsue-

    I am printing this info out as I am typing. You are so helpful to me.

    I think you are certainly in a good position to begin the Nexavir rx as your adrenals look pretty healthy.

    I need some time to rebuild, unless my hubs think I should try the nexavir.

    How are you feeling daily on a scale of 1-10 ? What is your typical day like? Do you plan rest periods and pace? How many hours do you typically sleep at night?

    Since I have moved my typical pacing pattern is off. I need to restablish a pacing schedule.

    Im so excited for you as you begin your Nexavir!

    Love and light,
    jolie

  4. cherylsue

    cherylsue Member

    I hope you are able to build up your adrenals and support your immune system. Some people just don't respond well to antivirals. I tried Famvir in the very beginning of my relapse in July and felt I was going into toxic shock.

    My activity fluctuates from day to day, hour to hour. Maybe, I'd rate myself as a 4.0. I can drive locally since December. I have malaise (flu-like feelings) and heavy fatigue that also fluctuates. In December, before I came down with a cold I could walk 6 blocks. Now, I can only walk 2 blocks. My cold, although moderate, lasted 3 weeks in January.

    I'm a little torn about exercise (walking). It has helped me in my recovery in my previous relapses. But it has to be built up gradually, and not every day. I think it helped with my stamina. However, too much exercise can bring on a relapse. Walking may only be done in my better "phase" of the day. If I am in my sick phase, resting prone is how I treat that. 15 minutes to an hour usually helps.

    I like the .25 klonopin. However, I don't take it every night. I'm wondering if that RX is contributing to my sedation. I can fall asleep, but I can't stay asleep. I wake up several times. I'm so thirsty at night. I drink, go to the bathroom, drink some more. I'm not diabetic, either. I'm peremenopausal/menopausal? which may be affecting that, too.

    I feel like I have a perpetual case of the flu, so I figure my CFS is viral.(sudden onset with fever) I also fit into Dr. DeMeirlier's Profile 1 group - neuro symptoms with very little pain. My neuro symptoms improved after the first 4 months.

    I had mono when I was 5 years old. Maybe, that and other things set the stage for CFS.

    I will be taking the lowest dose of Nexavir available. It comes in 3 strengths. I'm not even sure my insurance will cover this expensive RX. From my research and the experiences of people on this board, I think this is my last hope. My motto has always been DO NO HARM. That's why I won't go on the Valtrex, Famvir, Valcyte routine. If, and when, I get through this bout of CFS, I don't want to do permanent damage.

    Also, I am very sensitive to meds when most people are not. I can't even tolerate D-Ribose. Dr. Cheney said that 1/3 of his patients can't digest this sugar, and it is toxic to them.

    So, I'm starting at the lowest dose of Nexavir. I don't know if that is going to knock out the infection in my brain. (According to Dr. DeMeirleir, that's what is happening to this group - a low grade viral infection. Also, heavy metals and pesticides toxicity may be involved, also.)

    What is interesting is that Dr. Cheney says that Nexavir kills in vitro ALL the herpes viruses. My doctor thinks, although never tested, that I have HHV6 because of the remitting/relapsing quality of my illness. That trait resembles MS. Dr. DeMeirleir's group one CFS profile.
    It's a matter of putting the pieces of the puzzle together, figuring out what you have, and trying to treat that.

    ProBoost and Sambucol helped me recover from my last relapse relapse in 2004/05. However, I think my body built up a resistance. Antivirals need to be rotated. Even Nexavir will wear off after awhile.

    These are just my opinions. You need to do the research. I think the FFC helped you diagnose your weak points. I'm not so sure their protocol was the right one for you.

    My prayers for our good health and recovery,

    CherylSue

    [This Message was Edited on 02/12/2007]