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Dr. E. : Nexavir VS. Dr. K : Imunovir --WHY?? why different advice/treatments?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by HTree, May 3, 2012.

  1. HTree


    Hi Folks,
    I am wondering: I've seen Dr. E , who wants to do the Nexavir injections.
    I also decided to (and was able) to get another opinion and went to Miami to see Dr K's people. They suggest Immunovir.

    Does anybody know why Dr. E does NOT like imunovir? and visa versa? Why do these experts prescribe different immunomodulators?
    Is it purely an access thing? Are there alliances to the manufacturers of the drugs?

    Not much data on effectiveness for either--but certainly it seems both have helped some folks.

    My relevant "stats" are:
    EBV (IGG EA very high)
    HHV-6 (High)
    Low NK cell activity
    Age--youngish ;)

    Any thoughts on why the different treatment recommendations? ( Am I cynical to ask whether Dr. E makes money from his injections, and therefore...? I have to least Imunovir comes from a different source that Dr. K's office?)

    My instincts tell me that they are both very, very competent and..also nice people. But I am indecisive about which to try, whose advice to take. And since each drug will take 6 month at least to see if working, I feel like I want to pick the "right" one for the "right" reasons on the first try, ideally!

    Any advice, thoughts, insights, speculations?

    Many thanks!!

    Take care all-
  2. lnester7

    lnester7 Seven

    The only thing I can tell you is that I am using imunovir (and equillibrant) and I AM LOVING IT, in 2.5 months I have gone from 4 to 7 somedays 8 in the energy scale. I have not have the test yet done to see if my NK cell are higher or not. I am due to test on July. But I have felt the difference so far.

  3. ukxmrv

    ukxmrv Senior Member

    I didn't the impression from Dr Enlander that he didn't like Immunovir. He has his own stable of drugs and treatments and keeps adding to it. He seemed to be quite happy with my taking Immunovir and didn't try to get me to stop. With so many drugs to chose from he may only be adding this as his patients report success to him and he's being cautious.

    Do appreciate your concerns but I don't think it is about money. The treatments you see with any CFS doctor can reflect who the doctor trained with and who s/he talks to. Nexavir was used for a long time by other CFS doctors in the USA as well and is historically been reported as benefit to patients so if a doctor comes from that particular time or talks to that group he's more likely to have it in his arsenal.

    You've got 2 great doctors to chose from. Lucky you. All we have for CFS and ME are experimental treatment and it's really hard to tell which approach is going to be the best one.

    Good idea to ask here as someone with a similar profile to yourself may be able to advise on treatments from both or one.
  4. *GG*

    *GG* senior member

    Concord, NH
    "Does anybody know why Dr. E does NOT like imunovir? and visa versa? Why do these experts prescribe different immunomodulators?"

    Does he have email? Perhaps you can ask him? Also, perhaps they prescribe different Imodulators, because your blood work was not the same?

  5. HTree


    Wow, lnester that is amazing! So excited and happy for you!

    I think I read in another post the first 4 weeks were really hard for you? (i'm attempting to prepare my support people/family for how long I'll be completely out of it).

    I also wonder, it took ten years from me to get a proper diagnosis-- i see you've had this for "just" a few years (just! forgive me, anything more than a day is certainly too long to have this)-- In any case, I've been wondering if certain immunomodulators work better for those more recently sick. Hmm...But that's a side thought.

    Thanks for letting me know!

    GG, he does have e-mail (his nurses reply) but honestly I feel a bit--badly? funny?-- asking him to justify and explain his decision-making. I sort of asked in the appt briefly, and he just said something about not finding that Imunovir works so well (or perhaps AS well?) as nexavir. But it was rushed by that point so...

    UK Xmrv:
    May I ask, were you on Imunovir Before you started seeing Dr. E? Or, how did you end up on it as he doesn't usually prescribe it, from my understanding?
    I wonder if he'd be ok with me trying Imunovir first, and then Nexavir later... (have you tried both? did you need both? Helped by either?
    Thanks so much for your input.

    Thanks all!!
  6. ukxmrv

    ukxmrv Senior Member

    No worries Htree, I was already on the Immunovir when I met Dr Enlander.

    It was prescribed by a previous doctor. Sadly, I couldn't afford to keep buying the Nexavir but I've been happy with the Immunovir so far. Dr Enlander only comes to the UK every now and then but when I see him again I would like to discuss the MAF 878 (?) he has started to use with some patients. I tried MAF from another source and I did well on the small amount I was able to get.

    My impression is that he is quite happy for patients to be flexible and try different things. Maybe send and email and just check it with him of course.

    I've been sick for 25 plus years and it's only been in the last 4 that I've made breakthroughs. Lack of money and we have few UK doctors who prescribe experimental treatments.
  7. CindyWillis

    CindyWillis Senior Member

    Here is the article I found on this topic comparing different ones for different doctors:
    Nexavir (Kutapressin) for ME/CFS
    With thanks to a blog of cfssufferer. Nexavir may improve ME/CFS symptoms because it: 1. Inhibits EBV, 2. Inhibit HHV-6, 3. Is anti-inflammatory, 4. Is antiviral, 5. Is an immunomodulator (Nexavir may help shift the immune system away from Th2 dominance.), 6. Enhances blood flow in the brain (as measured by a SPECT scan.). This increased rate of blood flow may be a consequence of the Bradykinin effect which involves dilation of the blood vessels.

    Dr. De Meirleir

    Dr. De Meirleir performed a study involving the administration of Nexavir or a placebo to ME/CFS patients. 63% of those ME/CFS patients in the treatment group responded to Nexavir while only 17% of those ME/CFS patients in the placebo group responded. Dr. De Meirleir finds that approximately 50% of his patients are pain free after 2-3 months of Nexavir injections. His patients generally experience a normalisation of sleep within 3 days of commencing Nexavir. Approximately 70% of Dr. De Meirleirs patients experience a 20+ point increase (based on the Karnovsky scale) as a consequence of taking Nexavir

    Dr. Cheney

    Dr Cheney formerly recommended Kutapressin as a treatment for ME/CFS. He stated that it is analogous to a weaker form of Ampligen. In the past Dr Cheney used Kutapressin/Nexavir injections however at some staged preferred using the gel form of Nexavir. He has also stated that his patients generally experience a 20-80% improvement as a consequence of taking Nexavir gel and secondary treatments. ECHO terrain maps now mainly influence Dr Cheneys ME/CFS protocol and he has consequentially stopped prescribing Nexavir. He now uses his own mix of five cell signalling factors instead of Nexavir. These are; porcine brain, bison liver, bison heart, bison kidney and bison pancreas.

    Dr. Enlander

    Dr. Enlander used Kutapressin for approximately 12 years until Schwarz Pharma ceased producing it. He then originally tried Nexavir on his patients however due to the preservatives within Nexavir, he trialled his patients on Hepapressin. Hepapressin is similar to Nexavir however it is an Argentinean bovine liver extract, as opposed to porcine liver extract. Dr. Enlander recommends that his patients take other substances in tandem with Hepapressin to increase its effectiveness. 67% of his patients have shown an improvement as a consequence of weekly Hepapressin injections in combination with other treatments. Recently, Dr. Enlander commenced a study alongside Dr. De Meirleir that examined alternative ways to administer Nexavir/Hepapressin.

    Dr Teitelbaum

    Dr. Teitelbaum has noticed a dramatic improvement in some of his CFS patients as a consequence of taking Nexavir regularly. He has found that those patients who took Nexavir three times a week didnt gain much benefit as daily injections are a ?necessity. Dr. Teitelbaum has also observed that some of his patients CFS symptoms returned after discontinuing Nexavir.

    Dr. Lapp

    Dr. Lapp provided almost every ME/CFS patient that made an appointment with him, the opportunity to try Kutapressin. He has labelled it as a wonderful alternative. Dr. Lapp has stated that Nexavir was handmade for CFS patients with the main arguments against taking it being the cost and the necessary frequency of the painful injections.

    Combining Nexavir with Other Treatments

    Many specialists combine Nexavir with other treatments to either increase the efficacy of Nexavir itself or through the means of multiple treatments increasing the chances of a successful treatment. Dr. De Meirleir often uses Nexavir in combination with vitamin B12 injections. He recommends 10mgs of B12 (either methylcobalamin or hydroxocobalamin) be administered twice a week. Dr. Enlander combines Hepapressin injections with injectable; magnesium sulphate, folic acid, B12, calphosan, glutathione and trace elements. Dr. Cheney (who no longer recommends Nexavir) formerly found combining Nexavir gel with Hawthorn leaf and flower an effective treatment. Some anecdotal reports indicate that combining Nexavir with other, more traditional prescription antivirals may increase the efficacy of Nexavir or one of the other antivirals.

    How to take Nexavir?

    Nexavir is to be administered by either subcutaneous or intramuscular injection. Different ME/CFS specialists have various protocols regarding dosage and frequency of Nexavir injection however the most commonly recommended dosage is 2ml administered daily. Some patients may experience a herxheimer type reaction on a 2ml starting dose hence it may be wise to work up to a 2ml dose. Dr Cheney (when he prescribed Nexavir) recommended that the dose be varied between 1 and 4 cc a day. Nexavir should be taken for at least 6 months to determine whether it may be an effective treatment.

    Other Details

    A prescription is required to purchase the injectable form of Nexavir. The only company that manufactures Nexavir is a Texan company called Nexco Pharma. A Texas pharmacy called Village Compounding produces Nexavir compounded as a transdermal gel. A prescription is also required for this Nexavir gel. ???Nexavir should not be confused with Nexavar, a drug that treats certain cancers.

    Negatives of taking Nexavir

    The main negative of taking Nexavir is the cost. At 2ml a day (the standard dose), Nexavir will cost approximately US$450 a month. As the minimum recommended treatment period of Nexavir is 6 months (barring side effects), the total cost of a Nexavir trial is approximately US $2,700. This is not including the cost of shipping, syringes or needles. ?Some insurance companies may partially cover the cost of Nexavir. Another negative of taking Nexavir involves the cumbersome daily injections. These have been described by some Nexavir uses as painful. The final potential negative of using Nexavir as an ME/CFS treatment involves the possible side effects (mentioned in an earlier section.) While the likelihood of experiencing these side effects seems to be minimal, the possibility exists.



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