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Dr. Salvato's opinion-XMRV

Discussion in 'ME/CFS Doctors' started by Frickly, Oct 26, 2009.

  1. Frickly

    Frickly Senior Member

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    Saw my doctor today and couldn't leave the office without asking her what she thought about the XMRV retrovirus. She handed me a copy of the NIH News on the discovery and told me that she thought it would be either the cause of CFS or a strong link. She said either way it didn't matter as there would be treatment for us. She also treats HIV and said there are many antivirals used for HIV that could also be used for CFS. She felt the research was very strong and that as soon as the test is available to the public they will start testing for XMRV in her office. I told her I would be the first one in line.;)

    On another note, I have not been feeling good and have alot of numbness, fever, pain, rashes and skin very hot to the touch. She said my tests show that my EBV is still active and not improving so she is putting me on an injection of "Glycyron plus" to be given weekly along with my glutithione/ATP injection.

    It is described as Glycyrrhizin-a potent anti-viral and immune builder. In addition, they have cysteine, an immune builder and are also useful in detoxification. They also have L-Glycine, a crucial amino acid in cellular health. These are useful in patients with CFS and Fibro, auto-immune problems and chronic infections.

    I am excited about trying this but not happy about another needle.:( I will put a post up in the antiviral section to see if anyone else has tried this. I am so happy my doc will be testing people for XMRV and I don't have to figure out how to get tested.:)
  2. shrewsbury

    shrewsbury member

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    hi Frickly How fabulous that you have a good, informed, positive doctor!

    Hate needles myself:(, but hope the new addition works to get you feeling better quickly:). I hope you can keep us posted on how the Glycyron plus works. I was interested in antivirals before and doing what I could with natural ones before the xmrv news. Now interest has escalated - maybe even to the point of getting regular needles again - ugh.

    islandfinn
  3. Salvato is the doctor who diagnosed me 18 years ago. I am now 300 miles from her, but to hear her words, that there will be treatment, is exciting. I respect her, immensely and think she is a great doctor.

    But unless Medicare will pay for the lab work, I will remain a pariah, abused by the system.

    At present, I have a primary doc who ignores the fact that I am basically bedridden. I once told him I had a terrible dysautonomia syndrome, after he kept making me sit up in his office. His response was, "Well, there's nothing we can do about that, now is there?" He thinks 'CFS' is a sleep disorder ( even though I test normal on sleep tests). I do not have enough money..to educate him, to make it worth his time to be educated.

    And it isn't as simple as 'find another doctor' for me. I am basically destitute. It's all I can do to keep my DSL connection which is my only window to the world. But I am glad others are going to be helped, thereby paving the way for the myriad like me who cannot afford testing. Those who can afford to, will avail themselves of dx and treatment options and perhaps eventually make everyone's suffering legitimate to insurance companies and the world. And that is a good dream.

    Another dream is a 'testing foundation'. Or a mandate that states' health dept's test for XMRV.
  4. Finch

    Finch Down With the Sickness

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    Frickly, thank you for sharing your doctor experience with us. I'm so interested to hear what people's doctors are saying in light of the new XMRV news. I've got nearly a month before I see my FFC doctor (not holding out much hope there given Teitelbaum's reaction) and another month after that before I see my PCP. I'm actually most interested in hear what the PCP has to say, as he's been a believer all along but hasn't ever had much of anything to offer in the way of treatment.

    I'm so sorry you've been having such a rough time, but it's good to hear your doctor is so supportive and knowledgeable. I hope the new injections will be of great help to you.

    Bluebird - I'm sorry to hear your current doctor is so clueless. That must be awfully frustrating after dealing with such a good doctor at the start. I will hope for you and all others in your situation that this XMRV research will bring testing and treatment for everyone!
  5. Frickly

    Frickly Senior Member

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    Bluebird

    Sorry your doc is so worthless. It took me 6 years to find this doc so I know exactly how it feels. I do feel very lucky that I found her and she happens to be in the same city as I am. I have no doubt that I was on the fast track to living my life from my bed.

    I hope that once this research has been replicated and the testing kits are available to the public that it will be easy for all of us to get this test. I think it would be in the best interest of everyone to know who has this virus so we can get it under control.

    Dr. Salvato told me that she can easily get HIV under control with a long list of antivirals to choose from but that her CFS patients are more difficult. I hope that will change in the very near future.
  6. citybug

    citybug Senior Member

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    Thank you Frickly, I wondered whether Dr. Salvato's patients were doing really well since I haven't seen any on boards before.
    I think Office of Disability should be added to list to write to, to cover this test through medicare.
  7. dmholmes

    dmholmes Senior Member

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    I'm here, and am a patient of Dr. Salvato's also :)
  8. Frickly

    Frickly Senior Member

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    Hi David

    Just curious, if you feel like sharing. What kind of treatment do you receive through Dr. Salvato and do you feel it is helping?

    Kdp, I have talked with several patients of Dr. Salvato on other boards. Some have been helped and some have not. Luckily I am one of the patients that could tolerate glutithione and it has helped alot.

    Take care,
  9. dmholmes

    dmholmes Senior Member

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    Glutathione shots, didn't do anything for me. I stopped them when I decided to pursue the active B12 protocol.
  10. kolowesi

    kolowesi Senior Member

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    frickly Dr. Salvato on XMRV

    Thanks for the info. Every time I hear of one of our long-time physicians reacting favorably, it gives me hope.

    Keep us posted!

    Kelly
  11. Cloud

    Cloud Guest

    Frickly...thank you for this encouraging information from Dr Salvato.

    Glycyrrhizin is a substance from licorice root extract. I didn't know that it came in a parenteral form. I got an oral form from a compounding pharmacy and used it for adrenal insufficiency....It supports the adrenals to do the work rather than using hormone replacement. For me, it worked much better than Cortisol supplementation. It's also good for Immune Modulation as well as GI health. All around good stuff.....just watch the Blood pressure.
  12. Abbydoodle

    Abbydoodle

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    Want to say that I started with Dr. Salvato in 2000 and at that time I had an ATP level of 3 --walking rigor mortis. No wonder my muscles hurt. Much to our consternation we could not get above 10 prime is around 30. I would not have lived without the ATP/Glutathione injections ---but I had to take more than the normal person. In 2005, I pursued my health issues with a geneticist after I found an autopsy that sounded just like me. Found out that I have a metabolic disorder in the urea cycle ---specifically ornithine transcarbamylase dificiency disease. Medication for that was $12K a month. Once stabalized my ATP was up to 19 but still had migraines every day, and then candida and viruses reared their heads. Because of the problems in the urea cycle ---this causes immune dificiency problems. I was at a university group --they had no clue. Am back with Salvato treating the systemic fungal and viruses. In a week and half the 103 to 104 degree fever I have had for 5.5 months is slowly going down!!!

    She is an angel and a goddess to me. I keep copies of each report and can tie the readings back to the other Health problems I have because of the OTCD. She has never been wrong or over exaggerated. We have shared a lot because she has learned how a metabolic genetic disorder can cause the CFS/ME and viruses in my case. There may be others out there. I have to scrimp and save for the ATP injections but I don't wake up in the mornings with out them. My husband says he has no wife without her supplemental treatment along with my regular treatment.

    If you are responding to treatments in the B family ---maybe you ought to have your liver checked. You do know that some of the viruses can damage the liver. I have a reknown liver specialist that follows my case since that is where the genetic disorder is also --I have to take double the amount of the family of B's along with the double of other things because of malabsorbtion. I am also gluten intolerant. The villi in my intestine are damaged from the OTCD and from gluten.

    Sometimes changing your diet might help your complaints. I eat a yeast free, gluten free diet. Am basically vegan because I am madatorily required to be. Only 30 grams of protein a day. Of course no meats of any kind--all plant based.

    Salvato rocks for me!!!
  13. julius

    julius Watchoo lookin' at?

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    Frickly,

    Glycyrrhizin is the active component of Licorice root. It has an effect of raising cortisol levels.

    Given that cortisol has an excitatory effect on XMRV replication, keep an eye on your symptoms as you take it. If they worsen that could be the cause.
  14. Frickly

    Frickly Senior Member

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    Abbydoodle, so glad you have had a good experience with Dr. Salvato. I feel as though the glutathione really saved me but not a cure. I think we have to get our co infections under control or our bodies will never produce the glutathione it needs to function correctly.

    Julius, thanks for the information. I am now off the Glycyron plus and did not have any negative side effects. It did seem to really help and my rashes and fevers along with the burning skin stopped. I also stopped the glutathione/ATP because my backside needed a break. My fatigue is coming back and going back down hill. I am working on getting the lyme under control now and might start back on the glutathione once I get used to this new antibiotic.

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