Anyone heard of this new blood test?

Discussion in 'Fibromyalgia Main Forum' started by crisleem, Aug 3, 2006.

  1. crisleem

    crisleem New Member

    I went (upon the wonderful advice of a few members) to Dr. Salvato in Houston Texas yesterday. She was awesome and gave me the most hope I have ever had.
    She showed me some research that they can test with a blood test.
    I don't know all the details. But apparently many of us diagnosed with Fibro have had the mono virus. I know I had it in the 9th grade and have been tired ever since.
    But that virus attacks something in many of us that depletes our levels of Glutathione/ATP. I have no idea what that is. But she said it was what is need to build and maintain muscle causing us to have muscle pain, weakness and cause fatique and the brain fog we all complain about.
    Here's the best part. If we are low on that Glutathione/ATP they can give injections to get us to normal levels and our bodies will then begin to produce it's own!!! WOW.
    Some of you may have already heard all this. But it is brand new to me, since I had just about giving up totally in the last few years. I was trying to convince myself to just live with it. But the bad days told me to not give up yet.
    But this is such hope to me that I literally cried in the poor woman's office. She was so wonderful and promised me she will do anything to help me feel right again. It's been so long, I'm not sure what that will be like.
    Here are the stats on what the study found....there were 276 (218 women, 58 men) studied, 82% showed improvement in fatigue, 71% improvement in memory and concentration, and 62% improvement in level of pain.
    I'm going to scan all the information she gave me...several pages long. So, if anyone wants me to email them all she gave me...let me know.
    I'm so excited.
    Crislee
  2. TXFMmom

    TXFMmom New Member

    I started the injections with her. However, I have had one infection after another, and severe ones, since before they began and continuing thereafter.

    I mean sinus, bronchitis, staph, and I was sick, even on oxygen.

    The shots may actually help. One of the patients in the waiting room told me she had seen at least a fifty percent improvement.

    We have discovered, however, that my immune system is in the dumpster. I am going to need IVG treatment, in all probability, before I can get better.

    I am a former Advanced Nurse Practitioner and Nurse Anesthetist, and I knew something was seriously wrong with my immune system.

    She is a highly acclaimed physician and I love her, and she'll treat you with respect and she actually asks about pain levels, if that is part of your problem, acknowledges them and treats them.

    Sometimes, I think I have harmed my immune system and my sleep even further by inadequately managing my pain, and she told me that, too.
  3. crisleem

    crisleem New Member

    I feel she has been sent by God. I'm so happy to have heard about her. She made me feel so much better. I have not had one bit of hope in so long. I was so overwhelmed.
    I really wish I could share this with my husband. I miss him so much. But I wrote to tell him. I know it will make his day. I will take anything I can right now. Even just a bit of hope helps.
    But I believe her when she says she will do whatever it takes.
    I was worried about insurance because we go from Civilian fed employee ins. to Military insurance soon. She just kept telling me to not worry. She will work with me on anything.
    But what she said made so much sense. Since having mono in 1983 I have never felt 'right'. And it gets worse day by day. Before that I was a happy, probalby too hyper, intellegent child. I had chronic headaches, but not this!
    But the way I have felt lately, if this doesn't work, I will be devastated. But I have a wonderful husband and two sweet little girls that I have to be around (fully) for. So, I will just keep on going. What else can I do.
    I'm glad to hear I found the right lady.
    I can't thank everyone enough that referred me to her.
    God really does love me. He always shows me He does...in ways like this. When I feel so down that I want to give up...He shows me a light.
    I pray He will show everyone else in pain a ray of light soon.
    Smiling big today!
    Crislee
  4. crisleem

    crisleem New Member

    I emailed one of the researchers for a copy of the studies he has done.
    He has already emailed back. I have a copy of some of his work if you want it. Just send me a private message.
    He also suggest I join a yahoo group at (edited to remove URL per rules)
    There are people posting the progress on this new treatment.
    Crislee
    [This Message was Edited on 08/05/2006]
  5. sues1

    sues1 New Member

    You wrote:

    Sometimes, I think I have harmed my immune system and my sleep even further by inadequately managing my pain, and she told me that, too.


    How can we do that? What is the relationship?

    Susan
  6. TXFMmom

    TXFMmom New Member

    Inadequate pain management creates terrible stressors within the hypothalamic/pituitary/adrenal complex. Long term pain, without adequate management, can exhaust the system, and ours isn't in great shape to begin with.

    That, in turn, effects one's immune system.

    I am a former Advanced Nurse Practitioner and Certified Registered Nurse Anesthetist and an anesthetic required that we give something which created unconciousness, but we also had to give something to blunt the pain, as the body still felt it.

    It was a major stressor, and for many individuals, especially heart patients, it was absolutely imperative that we blunt the pain, with good analgesics. It could be all anesthetic gas agent, but most often it meant a mix of anesthetic agent gas and narcotics, POTENT, VERY STRONG NARCOTICS.

    The pain had to be stopped, to prevent stress on the heart, BP, and on the Adrenals, which would respond, from the stress of the surgery, anyway, but throw in inadequate intraoperative and post operative pain, and the stress response resulted in huge outpouring of adrenal hormones which are not good for the body and the the heart.

    I have, through the years, largely ignored treating my pain, very effectively. I should have known better, frankly. It has added stressors, as in medical stressors, to my body, and added extra wear and tear, and in the end, it has effected my strength and immune system.

    I had several bottles of Vicodin and other things, which were given to me after various operative procedures, and all of them had the seal intact. I would take Tylenol, and occasionally Tramadol, but never the Vicodin or anything stronger. I was afraid that if I asked the docs for anything stronger, they would think I was drug seeking.

    However, in the end, by failing to manage the pain, and blunt the stress response of inadequate pain management, I have stressed my body, which really didn't need it.

    In the future, she has told me to treat the pain, and from just taking a half dose at night, which has helped my sleep and kept down the pain in the mornings, I think I see a difference. I think I shall start taking small doses to see me through the day, and her belief is that I shall see improvement in my energy, and improvement in the immune system, which has been strained by the chronic pain.

    While I never, ever let my patients have unncessary pain, I did a poor job, indeed of taking care of myself, and needlessly so.
  7. sues1

    sues1 New Member

    Thanks ever so much. Makes sense. Thanks you for taking the time to answer me...............Blessings........Susan
  8. tlayne

    tlayne Member

    This sounds amazing! Please don't let this post get lost, and please keep us informed on your progress! Good for you! Hugs, Tam
  9. shootingstar

    shootingstar New Member

    We are not allowed to post e-mail addresses on the board, so you may want to edit your post to delete that. If you want to exchange e-mail addresses with someone you can set up a time to meet in chat and do so there.
  10. crisleem

    crisleem New Member

    I'm so sorry I broke the rules. I will edit it and take it out.
    Thanks,
    Crislee
  11. crisleem

    crisleem New Member

    Well its been two months.
    I'm taking injection number 6 today.
    So far I have not had a major flare up since beginning them.
    That is a great thing.
    But I'm still very tired. Maybe not as tired as i was. But the affects have mild so far. But i'm still so very hopeful.
    And any improvement is better than non.
    I'm very thankful for this.
    Crislee
  12. deliarose

    deliarose New Member

    I don't know how much research you have done but there are other ways to raise glutathione also, which may help.

    I've been told IV is teh best, but a lot of folks also take undenatured whey (Prohealth sells several varieties) and N-Acysteleine (sp?).

    They are precursors....which help yr body build glutathione.
    It takes 3 months to see any effect, I'm told.

    I have also used the reduced oral glutathione from Wellness Pharmacy in Birmingham, Alababama.

    There's a paper on another CFS site... Phoenix Rising....that lists all the sources of glutathione. Author is Rich Van Konyenburg (sp?).

    But, IMHO, glutathione and detoxing is just part of the equation. I know it's different for all of us.. but the biggest help for me, has been Transfer Factor to eliminate a chronic or stealth virus.

    (I also take glutathione...in various forms.)

    Check out Rich Carson's posts .. He is the CEO of Prohealth and he has written recently about his road to recovery.

    One post is titled Mercury Detox... NOt sure about the other one...

    Cheers
    Delia
  13. crisleem

    crisleem New Member

    The research you stated is exactly what Dr. Salvato gave me. I contacted him and he knew it must be Dr. Salvato that I was seeing.
    According to her, ATP/glutathione is what our muscles use to stay strong and healthy. Hence why we are tired, and hurt so much. I know some people in her office are taking them orally but she doesn't think it is the best for me.
    She has never mentioned the IV.
    Crislee
  14. deliarose

    deliarose New Member

    i thought Salvato did the IVs.. but you're saying she does injections?

    Intramuscular or just in a flabbly/soft tissue part of teh body?

    BTW, here's a comment from an Australian alternative practitioner who specialises in treating CFS..He's on a yahoo CFS list..

    " Issues such as heavy metals, gut health, glutathione and chronic infections are where the real answers lie in my opinion."
    Blake

  15. Mikie

    Mikie Moderator

    Undenatured Whey sold here. It is recommended by Dr. Cheney for increasing glutathione. In addition, I take probiotics (have for years) and colostrum. I've done these things to improve my immune system while doing other treatments to rid my body of chronic infection and hypercoagulation. Progress is very slow but if I look back five years, when I was bedridden most of the time and on Morphine for pain, I can see how far I've come.

    Love, Mikie
  16. hob

    hob New Member

    I am so happy for you! Please let us know how it goes because I would love to hear if it helps you.

    hob
  17. zenouchy

    zenouchy Member

    Dear Crislee,

    First of all, I can't tell you how totally happy I am for you that you are seeing light at the end of the tunnel. What a huge relief!! She sounds like an amazing doctor. The information you have received is just astounding and I hope you see much improvement very soon.

    I have a question for you! I live a few hours from Houston and am trying to get more answers for my fibromyalgia too! I'm wondering if Dr. Salvato could help me also. What kind of doctor is she, and how did you discover her? Thank you SO MUCH for your help.

    Warm hugs,

    Erika
  18. crisleem

    crisleem New Member

    She is an internist, but she specializes in Immune problems. I think her biggest things are Aids and Fibro/Chronic Fatigue.
    But my ATP levels tested at 11 and all normal humans should be at exactly 30! And my Epstein Bar is over 3000. I have no idea what they should be and you'd only show any level if you have ever had mono, but she said that was way too high for someone that had it 23 years ago. The level was probably the same as when I caught the mono virus.

    I found her from others on this forum. Everyone really had wonderful things to say about her. And I have had trouble all of my adult life and she seemed to totally understand. She didn't even look at me strange when I began crying. I was so happy that she felt she could actually help. She did say this was not a cure, but very close. During high stress times my body will stop producing ATP/glutathione again and I will have to have the injections again.

    Someone else asked me what type of shots these are. They are intramuscular. And she may do the IV, but she never mentioned that for me. I have only heard one person in her office mention taking them as a pill. I wish they were sub q but she said they just don't really work that way. Too bad, I could do that myself. It's a big shot and it stings. I just hope I begin producing on my own before I go back to Utah. I just don't feel I will ever find someone like her. She obviously does lots of research on the subject.
    The last jerk I saw told me FM was not a real disease, it is only a process of elimination (that I agreed). But she said it was just a name given when nothing else is found. JERK! Dr. Salvato after having her nurse practicioner check everything on me, then interview me asking a ton a questions, told me it is real and she can almost guarantee what my blood test would reveal. She was right too. It was the mono! She knew it. She did an EKG, chest, head and neck xrays, and about 7 blood tests.

    If a nurse on here is willing to come all the way from Dallas to see her she must be good. Dallas has the FM clinic. My entire first visit with Dr. Salvato was $350 before billing my insurance. That was after being with me for an hour or so.
    The pain is much much better. I'm still really tired, but not like I was. I think I was hoping I'd feel like someone my age (37) should. But perhaps that will come. I have to slowly rebuild my muscle strength.

    If anyone has even suspected mono, please have your Epstein Bar level checked and your ATP level.
    Mono was like having a long flu without the extreme body aches or sinus problems. Mine was more like extreme tired and depression. I was 14. My mom took me to the doctor when I had it because I couldn't get up for school, my grades were terrible and I would cry for no reason.
    Crislee
  19. pattigaul

    pattigaul New Member

    I am new to the board and have been diagnosed with CFS and FMS for four or five years. I have been treating the symptoms by a neurologist and PCP. I have been looking for a doctor that would help me find the cause and cure for this and intend to make an appointment with Dr. Salvato. I will let you all know what happens. I am slowly getting worse and worse. I must try and find out what is causing this. Patti
  20. srollins

    srollins New Member

    then what kind of money are we talking about for the injections?

    i had another question but i got interupted and now i can't remember what it was.
    such is life with this dd, huh?

    shirley