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'Natural' antiretrovirals?

Discussion in 'XMRV Testing, Treatment and Transmission' started by dannybex, Oct 12, 2009.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    We both continue to do well on LDN. He continues to gain physical strength and muscle due to his gained ability to do anaerobic exercise. Now our new protocol is allowing him to eat more food at one time without nausea, so this is another boon. We both are feeling that the immune affects of LDN continue to grow--but it isn't the whole answer and we still have lots of other symptoms. This new therapy will, we really hope, take us another notch up the functionality scale.

    For Sergio, it was LDN that gave him the stamina to actually jump through all the hoops necessary to travel to the US for treatment--and to make the very taxing trip. He recovered from travel quite well, even though he had lost over 5 lbs just from the trip itself.

    Sushi
  2. Seeker

    Seeker

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    Sushi - Thank you so much for sharing all of that detail - very happy for you! :)
  3. Jenny

    Jenny Senior Member

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    Thanks Sushi

    I'm very glad you're both improving. Please give my best wishes to Sergio.

    Jenny
  4. Rrrr

    Rrrr Senior Member

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    sushi,

    thank you for reporting on all this. i'm very interested in hearing all yr updates. and i'm thrilled that you are seeing results.

    i am curious about the issue of the xmrv negative turning back to xmrv positive. so what does that mean? if we don't kill all the xmrv then it can re-infect the body within a few days?

    also, i'm curious about how you could feel better so quickly after the treatment. i would think that it would take weeks or months to feel better when attacking xmrv. but what do i know.

    again, i'm thrilled to hear this report and really really hope you are on to something. with luck, yr doc can tell his mentors (cowden and klinghart) and since they are such big-wigs that will start a cascade of doctors hearing about it.

    if i have a doctor i want to share yr report with, someone who knows cowden's work already, what should i send him? yr initial report above?

    warmly,
    rrrr
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Rrr,

    Yes, many unknowns here but we watched the Klein video on prostate cancer and XMRV and that gave us some more clues. He said that when XMRV was infused intravenously it was detected in prostate cells (don't remember which kind) at the first test--i.e. within 5 days. This seems to mean that the stuff is very mobile and active. Then, at later tests, it disappeared from the first sites and showed up in other places--eventually in the brain.

    My doc tested us for the presence of XMRV in all the major organs and for both of us it only showed up in the brain--which to us indicates we didn't pick it up "yesterday." Also the switch from positive to negative and back to positive, only indicates the level of viral load. In other words, we test positive if there is more XMRV in us than in the vial and negative if there is less XMRV in us than in the vial.

    Some pathogens are available in testing vials of "nanodoses" (the Lyme family is) so that my doc can test us not only at some standard level, but using the "nanodose" vial, at a level that is barely detectable. XMRV is not yet available in a nanodose sample so we are coming up "positive" or "negative" when measured against some arbitrary standard concentration level set by whoever supplies the samples. As we have seen we can "cross this arbitrary border" with ease--though it took me 5 months to return to the "positive" level.

    An interesting and uncomfortable update: we are now waiting for our own set of perspex blocks to arrive so we can continue treatment. We had to overnight the doc's set back to him (he travels here from another city). So we have not had a treatment since Tues and really feel like crap! Hoping they arrive today. I did a FIR sauna last night and feel considerably better this a.m.--I'm guessing that this helped with "die-off" or whatever is going on.

    This is leading us to guess that we had established some hellish homeostasis with XMRV and treating it has disrupted this. We are thinking that it is vital, if we are going to chase this critter, to give treatments continuously, at whatever interval proves most effective.

    I am not sure what my doc is communicating back to Cowden and Klinghardt. Though though they are treating with the same methods, I am not sure whether they are treating any XMRV patients. I'll ask my doc to report back to them. I requested that my doctor get a sample of XMRV and when he did, he began testing all his patients for it. He is treating about 10 to 15 for it now, though I think Sergio and I are the first to try this energetic method. He was using the remedy orally on others (and me earlier) and only tried it with the perspex blocks when I said that the oral method had been hard for me to tolerate.

    So, if you communicate any of this to your doc, just extract anything that looks helpful. Sorry it is not written more scientifically. While these methods of treatment are based on the work of a German physicist (Dr. Fritz-Albert Popp), I haven't tried to read his work and am not sure if it is in English. Since the source is Klinghardt, who is German, it may not have been translated.

    I'll update this thread when we try treatment again.

    I just was reading the thread on Raltegravir and that is also very interesting. From very anecdotal patient reports, we are getting an idea that whatever XMRV's role is, it has a role and we need to treat it.

    Best,
    Sushi
  6. Rrrr

    Rrrr Senior Member

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    sushi,

    thanx for this additional info! (it is not for my doc -- i WISH -- but another doc i know in calif. a friend of my mom.)

    so how much will it cost you to get the supplies you need to do this on yr own?

    keep us posted on all yr developments!!!

    rrrr
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Rrrr,

    The 2 perspex blocks come to $225. My doc gave me a some of the remedy we tested well for--so we can resume treatment as soon as the blocks come (we already bought the laser for about $30), and he will also order sample vials of XMRV, all the Lyme cousins, some other viruses and pathogens he thinks I might be sensitive to, and a basic set of likely anti-viral, anti-Lyme remedies in vials--so that we can keep testing ourselves. Once you deal with one pathogen, others "have room" to express themselves, and so you can test positive for things that were previously hiding. Apparently you will only test positive for things that are "active" at the time of testing.

    I think he said that the vials are about $10 each, so the cost will depend on how many he orders. I respect that he is willing to do this and thus, in some ways, put himself out of business by giving the patient more power. Not many are willing to do this.

    Sushi
  8. Rrrr

    Rrrr Senior Member

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    true! a good doctor indeed.

    where did he get the xmrv sample?

    can you tell judy m about all this? (did the WPI study ever contact you for yr blood sample?)
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He got the sample from a large medical supply house that prepares samples for all the docs who use bio-resonance techniques. I don't know the name of it but if anyone wants their doc to request a sample, just PM me and I'll PM back my doc's contact info.

    Re: Judy: no to both--we are not sure about how to convey this info to Judy as, whatever she might think about this sort of treatment, she has to--publicly at least--show only her "hard science" credentials as she has staked her career on the hard science of this research.

    Ideally, we would like a prominent M.D. or researcher to convey our experiences to her, as for all she knows, we could be total flakes who are tight-roping on a very doubtful wire. We would like her to know that patients are getting noticeable responses from methods other than pharmaceutical anti-retrovirals, but we think that someone known to her should pass on our experiences. Also, it is very early days for us and it might be better to wait until we have guinea-pigged out a protocol that gives reliably good results.

    Whatcha think?

    Sushi
  10. Rrrr

    Rrrr Senior Member

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    i know she is open to hearing all treatment options. and her email address is readily available. i could send some info to her, as she answers my emails (as she does with most people's emails). but you are right, it is likely best to have a bit more info under yr/our belts before approaching her. more patients who have gotten positive results. maybe you can post here (or start a new thread), calling for people who live in the same area/town/city as the doctor you are working with. i.e. see if you can find any PWCs who want to see this doctor, and be the next level of guinea pigs? the more folks who respond positively to this treatment, the better armed we are with approaching any doctor or researchers, including judy m.

    i really think the next step is for you to implore yr doc to tell cowden and klinghardt about this. that is what i could focus on. once those bigwigs get on board, the word will spread fast among the cfs and lyme communities. my (former) lyme doc, a big wig in new england, listens (listened?) to cowden.

    rrrr
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Restarted "natural" anti-retroviral treatment

    Well, we received our own equipment to again begin treating XMRV thru bio-resonance using an herbal mixture that tests well for reducing XMRV.

    To recap: we put a vial of the remedy in a perspex block on our left, place a solid perspex block on our right and activate the remedy with a red laser. It's energy signature passes thru us into the other perspex block. Afterwards, muscle testing shows that the remedy is "in us." Sounds crazy but it definitely is doing something powerful.

    Previously we did treatments everyday for several days, had a couple of days of feeling nearly well, then a week of being more or less bedridden as we had to send the equipment back to our doctor and went about 10 days without treatment.

    However, after he returned to his "normal sick state," Sergio had more stamina than previously in the gym.

    We started again last night, this time only using the laser for 15 seconds instead of the 30 seconds we did before. We started feeling the effect within an hour--first nausea and then fatigue. This morning the light intolerance we experienced with earlier treatment came back--so we are both wearing dark glasses with the drapes closed. We both feel fatigue (as before) and also are urinating a great deal--also as before.

    Sergio was hungry again today (in the five years of his illness before starting this treatment he never had hunger). I have less fatigue than he does, but I am also less sick and recovered from our previous treatment a few days before he did. He is also experiencing less excitotoxicity--as he did with the last treatments.

    Our plan is to treat ourselves every 3rd day and to hopefully find a rhythm where we maximize the gains and minimize the fatigue. We are cautiously excited as, something is happening and whatever that something is, it is decreasing symptoms--after we get through the die-off, reaction or whatever we choose to call it.

    Our experience seems similar to that of some others who are treating XMRV through various modalities--there is a tough period to get through which may possibly be an inflammation reaction (IRIS: http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome), then an improvement.

    We hope to eventually lower viral load enough to have more a more consistent reduction in symptoms.

    We'll keep you posted,
    Sushi & Sergio
  12. Forebearance

    Forebearance Senior Member

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    Thank you for all the details about your treatment, Sushi and Sergio.

    I had a strange experience recently. I had been taking more pineapple enzymes than usual because of mild grass allergies. When allergy season was over and I went back to my normal dose, I suddenly felt much more poisoned.
    I increased the bromelain again and the symptoms of inflammation and toxicity receeded.

    Odd. I've been taking plenty of bromelain for years and found it helpful but not hugely noticeable.
    I mean, if I missed a single dose, I didn't feel worse.
    Now I do.

    Maybe it is because I've been taking Lauricidin and mushroom extract and had a round of antibiotics recently.
    Whatever the reason, these days bromelain is making a huge difference in my level of inflammation.

    Could it be that we need to take more enzymes as we take more virus killers?
    Does anyone else who is taking anti-retroviral drugs or supplements feel like experimenting with bromelain?
    And reporting their experiences?

    Forebearance
  13. soulfeast

    soulfeast Senior Member

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    Sushi,

    How are you using the light? And what kind of red laser? The block holds the formula and you shine the light through it which then hits the other block? This is interesting to compare it using a nosode form of the virus and photon therapy.

    Thank you for sharing this..
  14. moonchild

    moonchild

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    i found this really interesting to read as i've really gone downhill the last 6 months or so - now i'm wondering if it could perhaps co-incide with stopping taking digestive enzymes at every meal...going to start it up again and see if things improve on the offchance.
  15. Alexia

    Alexia Senior Member

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    Thank you so much Sushi for sharing so many details of your treatment with us. it's so important to learn what other people are doing and their reactions. The information you are giving us is very valuable!
    Good luck with the treatments!
  16. Dreambirdie

    Dreambirdie work in progress

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    Hey Sushi--

    Thanks to you and Sergio for sharing your experiences. I look forward to hearing more about your adventures with this method.

    Cheers! ~~DB
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    We are using a good quality simple red pointer laser. And yes, unbelievably, the energy of the remedy seems to pass through us to the block on the other side. The effects are potent and I am trying to figure out the right timing. So far 3 day intervals seem to work best. I tried doing it more frequently and ended up so exhausted I couldn't get out of bed. Previous to that I had a day where I was almost asymptomatic. We are also experimenting with how long to use the laser.

    I have use photon therapy and LED's as well. We hope a nosode of XMRV will be developed soon.

    Sushi
  18. camas

    camas Senior Member

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    Aspirin

    I missed this the first time around and hadn't seen anyone else mention it. As noted at Vincent Racaniello's blog, Ila Singh's testing of XMRV inhibitors wasn't limited to antiretrovirals. One of the other drugs found to inhibit XMRV was plain old aspirin. While not technically a natural remedy, unless you take it in the form of white willow bark, it certainly seems like something worth adding to the supplement regimen.
  19. cfs since 1998

    cfs since 1998 *****

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    Aspirin was found not to inhibit XMRV in Ila Singh's study.
  20. camas

    camas Senior Member

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    My apologies. I misunderstood the passage where Dr. Rancaniello mentioned aspirin as an inhibitor. He meant it as a drug that is known to inhibit other processes. It was found not to inhibit XMRV.

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