Txfmmom/Dr. Salvato Patients

Discussion in 'Fibromyalgia Main Forum' started by findmind, May 11, 2006.

  1. findmind

    findmind New Member

    Hi, I was just wondering how you like Dr. Salvato? I've heard of her, and read some of her zillion papers. She treats a lot of AIDS patients, doesn't she?

    Does she also see CFIDS patients? It would make a lot of sense, because of the immune system factors.

    What all did she give you? Are you doing better with the treatments? I have a friend in Georgetown area that needs her, but alas, HMO and no money.

    Does she take/file ins. for you? Are meds real expensive?

    OK, guess I've OD'd you with questions, now....hope you can answer when you're up to it.

    Hugs...
    findmind
  2. ANNXYZ

    ANNXYZ New Member

    Annxyz is curious too ! Tell us about your treatment and progress!
  3. findmind

    findmind New Member

    Please, now 2 of us "want to know"!

    Bumpy bump...

    findmind
  4. TXFMmom

    TXFMmom New Member

    My pain med guy suggested her to me, after the FCC pulled out, and I had severed my relationship with my old rheumy because he did not appreciate my seeing the FCC people.

    Dr. Salvato is a kind, gracious lady, and very knowledgeable.

    She does treat a large number of AIDS patients, FM patients, CFS patients and Lyme, etc.

    She did what I would consider to be the correct tests, and identified some things which had not been identified before including that my titer for the virus causing mono was EXTREMELY HIGH. It seems that I have been exposed to that in the last five years, as I was negative for it, and even herpes simplex five years ago. The level indicated that I was not infectious, but that I obviously had contracted it, and my body has not responded to it by attacking it and sending it packing, and forming the appropriate antibodies.

    She is treating it with antivirals.

    She kept me on Traxadone, increased my thyroid, in the T3 form, which the FCC and my internist had switched me to previously. She did this because despite having a low normal TSH, my reverse T3 was exceedingly low, despite being on it for over three months. She trippled the dose, and I think I am beginning to feel better.

    ADditionally she feels, as a number of studies have indicated, that a major problem for FM and CFS patients is that our ATP cycle is totally screwed, and we cannot create proper energy levels at the cellular level. My glutathione levels were rock bottom, which jived with this. The fcc had not tested for that.

    We went with a weekly IM injection of 1 cc of glutathione/ATP injections and I am to see her in six weeks.

    I saw her for my followup for the lab tests right after the CDC studies had been reported and she feels that the results are definitive for being able to diagnose patients, and GIVES VERY FIRM VALIDITY TO THE REPORTS OF THE PATIENTS ON THEIR SYMPTOMS.

    The genes involved have been studied extensively and identified as to what they control and adjust and genetic abnormalities in them could and would explain how our serotonin, and HPA AXIS IS SHOT. She also feels that CFS and FM patients are all going to have the same or similar genetic findings.

    She believes, as do I, that the various subsets of CFS and FM are just that, subsets of the same basic disorder. There are several different forms of arthritis and lupas, but in the end, they ALL HAVE ARTHRITIS.

    Her take was that when they finally do the same tests on FM patients, or those who meet the critieria, that the same results shall be found.

    SHE DOES NOT PRESCRIBE XYGREM.

    I am tryng to strongarm my sleep guy into it. HE WON'T DO IT UNLESS MY INSURANCE COMPANY GIVES HIM SOMETHING SAYING THAT THEY WILL CONSIDER OFF LABEL ADMINISTRATION OF IT, WITH THE RESULTS OF MY SLEEP LAB, WHICH SHALL BE MY FIFTH, AND ACCOMPANYING STUDIES ON IT FOR NARCOLEPTICS AND THE ONES DONE BY I. JON RUSSELL AT UT SAN ANTONIO AND BENNETT AT OREGON.

    The literature is so complete on what SLEEP DISORDERS SUCH AS OURS DO IN TERMS OF BLOOD PRESSURE, CHOLESTEROL, HEART DISEASE, FATIGUE, MENTAL FOG, PAIN, ETC. that the correlation between the need to have something which can cycle our disorder is irrefutable.

    I AM BUTTING MY HEAD ON THAT, HOWEVER. I shall, if necessary, hire an attorney to get the answer.

    IF I must, I'll pay for it myself for six month, document the improvement with another sleep lab, and that should FORCE THEIR HAND.

    I will do all the research on getting the studies, etc. as DOCTORS AND THEIR OFFICES HATE TO DO PAPERWORK, AND DEAL WITH INSURANCE COMPANIES.

    I have resorted to going to the offices of my internist and others and going through the records, and doing the reports and forms, and then they review them and sign them.

    Not everyone is capable of that. Were I ever to reach the point where I could get back even part of my strength, etc. I would like very much to do that sort of thing for patients, to document for their diability drives, suggest what should be tested that hasn't been done, and to help them wade through and fight with their insurance companies.

    She TAKES MY INSURANCE AND IS ON MANY, MANY OF THE MAJOR PLANS. MY CO-PAY WAS $20.00

    I did get the glutthione/ATP already drawn up in syringes from her, for $10 per week. That is cheap, and I could have gotten a bottle and have drawn it up myself. I just DETEST THE THOUGHT OF HAVING TO TRAVEL WITH IT, HOWEVER.

    I hope this answers your questions.

    I can spot a drug rep from 500 feet, and I was waiting in the office of my husband's gastroenterologist, while my husband was having a colonoscopy and esophagoscopy and this young man was waiting. I asked him what he was selling, and we got into a discussion and he had CFS, HAD FOR FIVE YEARS. HE SAID THAT HE WAS IN TERRIBLE CONDITION, AND HAD TRIED EVERYTHING, SINCE HE HAD ACCESS TO EVERYTHING, BUT HADN'T GOTTEN ANY BETTER UNTIL HE STARTED SEEING DR. SALVATO.

    He said that he had been on Adderall for a while, to give him a boost, so he could work, but it wore off about the time he returned home and he became unbearable. SHE SWITCHED HIM TO PROVIGIL and he said it had saved his marriage.

    I think her prices are fair, but it is a little time consuming to get the first appointment and SHE HAS A GREAT ADVANCED NURSE PRACTITIONER.

    Good Luck
  5. findmind

    findmind New Member

    How kind of you! You are so thorough and thoughtful to have posted all this interesting info about your experiences with Dr. Salvato and her office.

    I am going to take your answer to my PCP and see if he could help me by using some of her methods. I, too, have very high EBV titers, have had for over 10 years. I also don't know if I've been tested for reverse T3, know he takes FSH, T3-4 tests, but does that mean "reverse" T3?

    I have had my levothyroxine dose lowered in last 6 mos, he said I didn't need as much as I was taking.

    What is Traxadone for?

    Doesn't the ATP cycle not creating proper energy levels at the cellular level tie in with Dr. Cheney's statement in the same regard? Interesting...

    I will get my glutathione levels checked too.

    I can't believe how accomplished you are with record-keeping and documentation...and WHEN you get well, yes, you could be a "medical care manager" and be so helpful to many with CFS/FM, so good luck!

    The drug rep story was incredible! I'm concerned about Provigil...have heard that long-term it is quite bad for us..do you know anything about that?

    Anyhow, I'll be watching to see how you're doing, ok? So glad you are getting to good care you need!

    Hugs..
    findmind
    p.s. dncnfngrs: Dr. Salvato is in Houston!


  6. ANNXYZ

    ANNXYZ New Member

    Thank you for the details you shared ! Do you have lyme disease ? Do you know of anyone who has recovered from lyme under her care ? Thank you for answering this post .
  7. TXFMmom

    TXFMmom New Member

    She is located in Houston, TX.

    The fog had me. I meant Trazadone, or Desyrel. It is an old anti-depressant which wasn't much of an anti-depressant but it made the patients sleep, so they have been using it with FM and other sleep disorders to assist with sleep.

    I do not have lyme. I have FM. I was first told I had Myastenia Gravis by one of the top neurologists at a big old prestigious Medical School in Houston, who had patients coming from all over the world to see him. He was involved in a bunch of the boob/FM cases. I had to jump him every time and remind him that my boobs were mine. HE TOLD ME I WAS A SICK, SICK PERSON. WELL, I WAS, BUT NOT WITH MYASTENIA. Personally, I had trouble with the Myastenia diagnosis. I had seen myastenics and I just didn't think it was a fit. He had treated a friend from my department and he put her on the meds for it, they made her sicker, and then, he even took her thymus out. He and I went round and round when he mentioned cracking my chest.

    I forced him hand, when I told him I wanted all the lab findings so I could get a second opinion. I thought he was going to poop his pants. SECOND OPINIONS, HE DIDN'T HAVE PATIENTS GET SECOND OPINIONS. WELL, PATIENTS COULD GET SECOND OPINIONS AND I WANTED THE RESULTS, AS IN NUMBERS AND FORMS FOR THE THOUSANDS OF DOLLARS OF LABS HE HAD DONE, AND SLIDES OF THE MUSCLE BIOPSY HE HAD PERFORMED, OR AT LEAST HIGH-QUALITY COPIES OF IT.

    I thought I was going to have to get a court order to get my own medical records. Finally, I wrote a letter, in the strongest possible terms to the Dean of the Medical School and told him what had transpired and I was GOING TO THE MEDICAL BOARD IF I DIDN'T HAVE THOSE RECORDS IN FIVE DAYS.

    I got the medical records. WHEN I SHOWED THEM TO TWO OTHER NEUROLOGISTS, WITHOUT TELLING THEM WHO HAD ORDERED THEM OR INTERPRETED THEM, AND THESE GUYS WERE AT OTHER PRESTIGIOUS MEDICAL SCHOOLS, THEY SAID, NOTHING HERE SAYS MYASTENIA.

    The next diagnosis was atypical MS, but nothing showed up.

    I was stumped. This was 1992.

    I was an intelligent, very successful anesthetist, and taught, but when an Orthopedic Surgeon who had known me for years told me he thought I had FM, I didn't even know what it was.

    Anyway, my internist said, yes, maybe. Sent me to a rheumatologist who said, yes.

    Suddenly, all those doctors who thought I was at death's doorstep when I HAD THE SAME SYMPTOMS, IDENTIFIABLE AND REPORTABLE, AS BEFORE, SUDDENLY THOUGHT I WASN'T SO SICK.

    Another friend, and several others we have traced who were CRNA's, have all developed severe FM. Personally, I think the stress of the job, coupled with CHRONIC AND ONGOING EXPOSURE TO THE ANESTHETIC AGENTS, IN GENETICALLY SUSCEPTIBLE INDIVIDUALS TIPPED THE SCALES.

    My mother does have FM, not as severe as mine, but she has arthritis as well, and my sister has it, as well.

    MY HUSBAND WAS THRILLED WHEN I CHANGED DOCTORS, AS HE COULDN'T BELIEVE THE BILLS FROM FFC.

  8. TXFMmom

    TXFMmom New Member

    I almost forgot.

    I think Provigil is as safe as any drug. It is non-addictive, not an amphetamine, doesn't produce paranoia, like amphetamines, which were just about all we could have used, otherwise, and the side effects are rare.

    I have noticed, however, that the 200 just doesn't get me through the day any longer. I have to take 100 as a bump, to get through the afternoon and dinner without collapsing into a nap.

    I don't know if I am developing some tolerance to it, or if my overall stamina and strength is worsening or if my sleep deprivation is mounting. Dr. Salvato said anyone with my mono level should be flat in bed, anyway, even without the sleep problem.

    I have severe spinal problems from an auto accident, and then a very severe fall in my big, fancy shower, which I thought would help my FM. I am going to have a lap band, and pray that will help, but frankly, my spine is so bad, I use a Scooter, and sometimes an electric wheelchair, and I am afraid I shall be confined within a couple of years.

    My pain med docs are anesthesiologists. Some of the earlier ones were neurologists. As an former CRNA, they will say things to me that they would never, ever say to other patients. A lot of us, anesthesiologists and anesthetists cussed a lot, frankly, and were earthy, with a smart alecky sense of humor.

    I had seen the one who did most of the office work a couple of times before they got my MRI's of my cervical and lumbar spine, and he held it up and read the report, and said, damn you are fucked. The first thing I did was laught with him, and complimented him on his bedside manner.

    Then, I said I understood fucked wasn't good, but could you put that in clinical terms. My neck was and is inoperable. You have to have a good area to fuse it to, and I don't. The four lower lumbar are bad, and now the thoracic are going.

    My dream of ever being able to be an advocate is a dream.

    However, I had Aetna insurance for a while and they gave me the screams. I have also developed a rare glaucoma in both eyes, it is TAKING ON BIBLICAL PROPORTIONS AND I HAVE CONSIDERED CHANGING MY NAME TO JOBETTE, and they were giving me this touble about a consult with a neuroophthamologist.

    I called and kept asking these questions and explaining the symptoms and possibilities and this woman didn't seem to have two neurons close enough to symapse. Exasperated, I finally asked her what RN school she had attended and she said none. I SAID NONE? I TOLD HER FLAT OUT THAT I WAS AN EXPERT ON THE NURSE PRACTICE ACT, AS I HAD TAUGHT IT, AND SHE WAS BREAKING IT BY MAKING DECISIONS RN'S WEREN'T PERMITTED TO MAKE, THAT IT HAD TO BE AN ADVANCED NURSE PRACTITIONER SUCH AS MYSELF.

    She said they had copies of things they had to follow and she had to follow her orders. I TOLD HER THAT DIDN'T WORK FOR THE NAZIS AT NUREMBURG AND IT WOULDNT' WORK FOR HER WITH THE NURSING BOARD. I demanded her full name and that of her two supervisors above and then above that. SHE STARTED CRYING.

    I said, Look I don't mean to be nasty, but you are playing with my health, you don't know what you're doing, and your company isn't meeting its' obligations to me and I know the Nursing Act and you and they and a whole bunch of people could end up in PRISON.

    She begged me not to do anything, and in 30 minutes I received a call from my Ophthamologists' office and they had me hold for him. He came on and wanted to know what I had done to Aetna. THEY HAD NEVER HAD SOMEONE CALL BACK TO GIVE PERMISSION CRYING AND BEGGING THEM TO INTERCEDE WITH THE PATIENT WHO WAS GOING TO TRY TO GET THEM ALL THROWN IN JAIL. HE WAS PLEASED AS PUNCH. SAID HE WANTED ME TO COME AND WORK IN THEIR OFFICE WHICH GOT CONFIRMATIONS, AND THEY WOULD JUST WAKE ME UP WHEN THEY NEEDED THE SNIPER. CALLED ME THE SNIPER, WELL I NEVER. WE BOTH HAD A BIG LAUGH.

    His nurses all were high fiving me the next time they saw me.

    He still tried to get me to go to work for him, offered me everything, but finally agreed he knew I could never even make the drive to the office every day and then function.

    I really do hate to have to waste what little energy I have fighting with insurance agencies.
  9. kalina

    kalina New Member

    I saw her for a little over a year, every three months. I stopped seeing her for several reasons -- one being that I was too far away.

    Having to make the drive from Dallas to Houston wiped me out, so my DH and I would have to check into a hotel to rest up before my appointment the next day. I would be in horrible shape by the time we got back home again, and it would take a week or two to recover. No more long-distance docs for me!

    My follow-up visits with her lasted no longer than 15 minutes (I assume due to insurance regulations). I am not sure it is possible for CFS to be successfully managed in 15-minute increments.

    I felt like my treatment (ATP and glutathione) was incomplete. I didn't feel better, and my test numbers never improved.

    Your results might be different if you live in or near Houston and can schedule more frequent visits than I had. She's a kind and knowledgable doctor.

    Kalina
  10. jarjar

    jarjar New Member

    I did respond well to the Nitroplex Powder that she sells in the office. Its an option if you don't want to work with the glutathion shots.

    She does write good letters in the event you go under a S.S. disability review of your case and you are her patient.

    I was dissapointed when she told me that a large percentage of her patients were testing positive for Lyme with a new test she was using. I got the results back and she handed me the paper work and said you don't have lyme.
    I presumed she knew what she was talking about so I filed the paper work away. A year later I pull the paper work back out and it said my results were inconclusive and that I needed to follow up with a Western Blot to determine if I had lyme. Needless to say I followed up with an Igenex Western Blot and I was positive.

    Findmind, If you are wanting further testing I suggest you have the Igenex Western Blot taken and have a LLMD look at it.

    Ann, I like many other Texans travel to see Dr. C in Springfield Mo. for lyme treatment I would say use him over Dr. S. for lyme. Dr. S is lyme aware but doesn't study it as much some other docs do.

    jar

    [This Message was Edited on 05/13/2006]
  11. ANNXYZ

    ANNXYZ New Member

    Who is Dr C in Missouri ? How often do you go to see him?
    Can you give me an idea of his charges if insurance will not cover ?

    What is your opinion of him? Would you be so kind to tell me about your treatment and if you are seeing improvement . I am feeling desperate .
  12. findmind

    findmind New Member

    She needs to see this..

    findmind