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Dr. Salvato's opinion-XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' 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. Cort

    Cort Phoenix Rising Founder

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    Just so you know I put a copy of this thread on the XMRV forum - wanted to get it over there as well. :)
  12. greybeh

    greybeh Guest

    For what it's worth...

    I'm a fibro patient. I saw the news on that Thursday in October. On Monday, I had an appointment with my doctor (a rhuematologist). A female doc meets with me before and after my appointment, and I handed her a copy of the news release.

    She said, "We talked about that this morning, and about how we might end up changing the way that we treat patients." She said that Science is a well-respected journal.

    I thought I'd chime in on the positive responses. :) My doc is part of the UPMC health system, which is large here in Pittsburgh -- so it's not surprising that he had already been familiar with the new development.

    Since then, I heard that the sample size for fibro was very small -- but that doesn't mean that more research won't be done and that fibro patients won't benefit. I'm hopeful.
  13. nina_online

    nina_online

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    My Salvato Experience

    My sister and I were diagnosed with CFS by Dr. Salvato a couple of years ago. Of course at the time I was so grateful to find a doctor who specialized in CFS.

    I showed high EBV (chronic mono), low immunoglobulin, high candida, low glutathione and low ATP. I was negative for Lyme, CMV, and HHV6. "Arsenic, Mercury and Lead levels were normal." I asked her to test B12 and folate, and she said they were normal.

    She prescribed glutathione/ATP shots, which I took remotely in Austin. My sister, who lived in Houston at the time, went to Salvato's office for glutathione IVs.

    But later when I learned more about CFS, treatments and the specialists, I was kind of disappointed in Salvato. Here are my concerns:

    1) I am concerned that her diagnosis (apparently based on high EBV, low glutathione and ATP), may not be based on sufficient info. I don't remember whether there might have been a questionnaire or something. But I have to wonder if her diagnoses would meet the Canadian definition, for example.

    2) Although I asked her to test my B12 (I had been low before), now that I know more about B12, I am surprised she didn't know that a normal serum B12 is not a reliable indicator of need for B12

    3) That type of heavy metals testing, at least as far as mercury is concerned, was not accurate.

    4) The extent of her treatment seemed to be glutathione IVs.

    5) Dr. Salvato gave me a (barely legible) copy of Rich's methylation cycle block - glutathione depletion paper. This is in fact what lead me to learn about Rich and Yasko. But when I called and asked the nurse whether they would order some of the tests that I need to test my ammonia levels since I have the CBS+ genetic mutation, they new nothing about Yasko, nutrigenomic testing or SNPs. Note that as my sister and I are both CBS+, we shouldnt be taking glutathione, at least not without supporting/testing for high resulting high ammonia levels (which are neurotoxic).

    6) More recently I got retested for EBV thru my GP, using Clinical Pathology Labs. The test report from CPL says that although I have some high levels (the same as last time under Salvato), they indicate an OLD ("remote past") infection, not a CHRONIC one. CAN ANYONE HELP ME FIGURE THIS OUT? I couldn't find any good info on the web as to which types of antibodies indicate a chronic infection.

    7) what about the immune stuff that Peterson, De Mierleir, and others look into? IL6, IL8, etc. Or has that happened since I saw Salvato in 2007?

    Sorry if this sounds too critical. It always freaks me out when I know things (e.g. about B12 levels, sulfur/ammonia, and mercury toxicity testing) that a doctor doesn't know.

    If I still lived in Houston I would definitely see her. But I'm not sure she is worth traveling to way some of the other specialists might be.

    Thanks,
    Nina
  14. nina_online

    nina_online

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    Salvato testing fro XMRV -- > covered by insurance?

    Not withstanding what I said in my previous post, I am interested in getting tested from her. Any thoughts on the likelyhood of this being covered by insurance. As I recall, she does manage to get alot of stuff covered, which ios great.

    Thanks,
    Nina
  15. dmholmes

    dmholmes Senior Member

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    My experience was pretty much the same as Nina's. Dr. Salvato's office is a detriment, I could not get them to help with the methylation pathways panel.
  16. zoe.a.m.

    zoe.a.m. Senior Member

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    EBV nina_online

    I can't answer the question of what does a test result look like that indicates chronic EBV. I finally had a titre test done (I'm guessing that is what you had as well) after many many years of illness. At first glance, I thought I had high levels of active infection. Upon further reading, I had high levels of antibodies and tiny numbers of active infection (don't have the lab work handy or else I'd just state the numbers, but each test should have its own "key" to make sense of the numbers).

    Is it possible that when Salvato did the EBV test it showed current infection, and now it does not?

    Hopefully someone else can shed some light on this as I think I have had a general lack of appropriate testing or a doctor who knew how to interpret. Many people with CFS state that they have high viral titres and I have always interpreted that to mean they have current infection. I don't know the in's and out's of of antibody vs. current infection rates in terms of accuracy and reliability. I'm guessing there are many on the board who might know a great deal about this.
  17. Lucie

    Lucie

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    EBV test

    Nina wrote,

    "I got retested for EBV thru my GP, using Clinical Pathology Labs. The test report from CPL says that although I have some high levels (the same as last time under Salvato), they indicate an OLD ("remote past") infection, not a CHRONIC one. CAN ANYONE HELP ME FIGURE THIS OUT?"



    Nina, I have my Clinical Pathology Lab EBV report in front of me right now.

    There are four things that they test: nuclear antigen, early ag (antigen?), IGG and IGM.

    The Interpretive Table beneath the reports say for chronic infection the IGG must be positive, the IGM must be negative, the early ag must be positive and the nuclear antigen can be either positive or negative.

    I also remember reading in Dr. Natelson's book that the positive early antigen was the indicator for chronic EBV.

    I've been to Dr. Salvato some too and she definitely knows a lot. I remember filling out quite a lengthy questionnaire and being asked a zillion questions by her physician's assistant, plus doing the Romberg test (neurological).

    She also treats AIDS patients and a few regular illness people. She may be spread a little thin on keeping up with every bit of information.

    I do admire her though. She is one of the first people willing to treat AIDS patients, and the CFS group in Houston absolutely love her.

    Last week when I called her office about the XMRV test, I was informed they were not doing that test yet (at least at that time). I ordered my own kit and have a local physician whose lab will do my blood draw.

    The question for me is, if you are willing to travel, who is a good doctor to go to?

    Good luck,
    Lucie
  18. Patricia Salvato was involved during the early 90's in research trials for 'CFS'. At the time I saw her, her pet 'thing' was the glutathione/ATP injections. I took one injection, and was immediately enveloped in a total body agony. This was anomalous to and concerned even Salvato. It was so severe that I refused another. Felt like a net of white hot lightning had engulfed me. I don't know the mechanism. I do know that this was all Salvato had to offer back then. Her primary practice was HIV/AIDS when I saw her. She was able to document immune abnormalities in me and confirm an official dx of CFS. This made me happy at the time. But it wasn't worth much to me in the long run. I already knew I was sick and felt bad, lol. Very few practical applications for a dx of CFIDS/ME, at least in my world.

    Still, I do respect her as a doctor and an intelligent one, at that. But internal medicine is a paint by number discipline in my book, and necessarily limiting for many reasons. Many who do things that make certain patient populations feel better/more well are alternative practitioners who do not even have hospital privileges and who are on a cash per treatment/sell your antiques to pay me sorta plan.

    Ok, tired now. Just thinking out loud.
  19. Frickly

    Frickly Senior Member

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    Wow

    Sorry you guys had such a bad experience. Personally, she is the first doctor in six years that was even willing to do tests necessary to rule out all other possibilities such as MS. She is also the first to mention and test for mycoplasmal infection which turned out to be a large source of my pain. I am grateful to her. Also, the glutithione/ATP injections are the only reason I am able to take care of house, kids, ect. I do beleive that she is spread thin as she has two practices. One for seniors and the other treating HIV/AIDS, CFS, Fibromyalgia and GWI.:eek: She is a busy lady.

    I think detriment is a strong word as she has helped many people. However, I think everyone is entitled to their opinion. I think we all know by now that the same treatment does not work for all of us.:)

    Take care,
  20. Actually, though not conveyed in my post I guess, I did and still do think a lot of Salvato. I would see her again. In fact, I recommend her, as in 'commend' her, to others.

    As you said, we each respond differently to identical treatments, which is part of what is so confounding for medicine/physicians.

    Salvato stands tall in my world. Unfortunately, I no longer have access to her, or any doctor of her stature/expertise.

    As far as the ATP goes, I think I had vascular spasms which I deal with to this day. If I could have continued seeing Salvato, I would have. I am certainly not dismissing her. She is a brilliant physican.

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