Dr. Montoya Visit Summary....

Discussion in 'Fibromyalgia Main Forum' started by swedeboy, Feb 5, 2007.

  1. swedeboy

    swedeboy Member

    I had my first appointment with Dr. Jose Montoya of Stanford University Hospital, (Infectious Disease Clinic). The first Doctor to great me was the young looking "Student Intern," Dr. Lunn.

    Lunn politely drilled me with a ton of questions about my CFS, and then gave me a brief physical exam. He explained the "Stanford Study" and told me that if I didn't qualify for it that Montoya would still probably treat me.

    Lunn also said that out of the 30 people in the study 10 would get placebo and the other 20 would get the real anti-viral. And he told me about the possible side effects, like the potential lowering of white blood cells, blood platelets, cancers, bone marrow stuff, and birth defects.

    Lunn explained that the most common use of the anti-viral Valganiclovir is for organ transplant patients. I forget exactly why, but it helps their bodies accept the new organ and helping prevent CMV too, something like that.

    So after all of Dr. Lunn's questions, and physical, Dr. Montoya came in the exam room. He is a very nice man and seemed to be compassionate and to sincerely listen.

    After the meet and greet, Dr. Lunn then quickly recited out loud all of the answers I gave him to Dr. Montoya. (It was cool I felt Like I was on an episode of 'Gray's Anatomy.')

    I really felt that Dr. Montoya (and also Dr.Lunn) took me and my CFS very seriously, and it was reassuring and heartfelt.

    After a few minutes of going over my information Dr. Montoya checked my lymphnodes for swelling, and he detected a slight inflammation of one lymphnode on the left side of my neck. He said it was slightly swollen.

    During Dr.Lunn's initial exam Lunn did not notice any lymphnode swelling. So Dr. Montoya showed Lunn the exact location on my neck and then had Dr. Lunn check again, and then Dr. Lunn says "oh yeah I feel it now." They both smiled and Dr.Montoya gave Dr. Lunn a warm nod of approval. I was like where are the cameras I swear I am on 'Gray's Anatomy' haha.

    It turns out that the EBV, CMV, and HHV-6 tests that I had done at Immunosciences Lab were the wrong kind! They were not from a "focus lab." So Montoya said I needed to have them re-done before he makes any decisions on treatments. Another thing is that Montoya is only treating the anti-viral aspect of CFS.

    Dr.Lunn said that Montoya is NOT going to take a comprehensive approach and treat all of my CFS symptoms such as insomnia, muscle pain, etc.. Like other Doctors do, such as Cheney, and Peterson. Lunn said these things will still be my Primary Care Physicians duty.

    At my next appointment with Montoya I am going to ask'em if he can recommend a new General Practioner for me. I am not satisfied with my current one. I feel like my current GP Doctor is in the stone ages with regards to CFS treatment.

    Dr.Montoya also said that most people he treats have higher titers to EBV than I do, but nonetheless mine were still elevated. So inconlusion I have to go back in three weeks, after my EBV, CMV, and HHV-6 tests results are ready. From a 'Focus Lab' of course. Then Montoya will be able to decide if I qualify for anti-viral treatments.

    For those who have been following my Immunosciences post:
    Dr.Montoya did briefly explain my
    "Secretory IgA = 108.0 Normal range 10-40 Ug/ml"
    He said "that just shows how much of the virus is in your saliva." Huh, interesting.

    I hope all of this makes sense, I am rather exhausted now, from waking up at the crack of dawn (beautiful sunrise though!) going to the appointmant and then having loads of blood drawn. So I may have to edit this later, hehe

    Peace and Love, Swedeboy

    P.S. Thanks Lisa and Carla for the most recent comments on the 'immunosciences lab result' post. :)

  2. swedeboy

    swedeboy Member

    "I'm not sure what Lunn meant. If the treatment works, all of your symptoms should subside."

    Well I was trying to get Montoya to take over as my Primary Care Physician and start treating me right away with my immediate symptoms, such as insomnia and muscle pain.

    Because I feel like my current GP Doctor is not doing a good job. I was also wondering if Montoya would want to treat me exclusively if he was going to presrcibe me something as serious as anti-virals.

    Just trying to kill two birds with one stone, hehe. One of the obsticles I face in finding a new GP doctor is that hardly any of the ones I want take medicare. My previous Doctor (who I really like) charges $250 just to step my foot in the door. But hopefully soon I'll find a new one or better yet, hopefully soon I won't even need one!

    Dr.Lunn said that in Dr.Montoya's previous study that 21 out of the 25 patients had miraculous recoveries, gaining 95% of their health back.
    [This Message was Edited on 02/05/2007]
  3. mezombie

    mezombie Member

    I'm so glad you got in to see Montoya! I think it's great that he'll treat you even if you don't qualify for the Valcyte study.

    By the way, I found this on Montoya's site (Virus Induced CNS Dysfunction) and thought it might help you understand what lab he wants you to go to and why:

    Interpreting Results from Commercial Laboratories

    There are several commercial laboratories that will test for HHV-6 and EBV. However, not all labs use the same metric. For example, Focus Diagnostics and Specialty Laboratories use an IFA method with results reported as titers (1:80, 1:160 etc). Other labs such as Mayo Clinic, Quest and Labcorp use the ELISA method and report with an index. There is no standard data publicly available that would allow patients to compare IFA and ELISA scores.

    <b>The Stanford group currently conducting a trial of Valcyte for these viruses uses Focus Diagnostics as their reference laboratory because they are familiar with their scale and can interpret the results.</b>
  4. Lichu3

    Lichu3 New Member

    Thanks for posting your visit. Just FYI, most specialists will not take on primary care of patients because it is beyond their specialty knowledge. However, it is a good idea like you're thinking of doing about asking Dr. Montoya for doctors within Stanford. Although you may still end up seeing an intern/resident they will often see you with one of the primary care attending doctors.
  5. Slayadragon

    Slayadragon New Member

    This sounds excellent. I am very happy for you--this sounds like it will be a really good thing for you regardless of what happens with the drug/study.

    It also is great to hear first-hand that Dr. M is a good guy.

    Best, Lisa

  6. monicaz49

    monicaz49 New Member

    I do not have my results back yet. But one of the 2 suggested labs to use was Quest. However on the lab slip to quest you need to write PROCESS THROUGH FOCUS. But the labwork is given to Quest. Must be a 3rd party involved somehow cause i dont think quest gives numbers of titers maybe.
    Ill update everyone too.
    Thanks all who have been sharing thus far!
  7. Slayadragon

    Slayadragon New Member

    Obviously I'm far from an expert at interpreting lab results, but I thought it was clear when I was looking at various articles that Secretory IgA was elevated with bacteria and parasites as well as viruses.

    (Unless this is a certain kind of Secretory IgA, of course.)

    I have no doubt that Dr. Montoya knows the answer to this, whatever it is.

    However, maybe he's focused so much on viruses right now that his mind isn't even going to parasites or bacteria when he looks at tests.

    I'd still consider asking him about those possibilities, especially if your new tests don't show enough viral activity to make him think an AV trial is warranted.

    Best, Lisa


    "Secretory IgA = 108.0 Normal range 10-40 Ug/ml"
    He said "that just shows how much of the virus is in your saliva." Huh, interesting.
  8. swedeboy

    swedeboy Member

    Yes, Very good point!
    I will definitely put that on my list of questions for Montoya.

    Thanks Lisa


    Swedeboy
  9. mezombie

    mezombie Member

    I'm looking for a doc who would consider treating me for potentially reactivated Toxoplasmosis. Toxo is a parasite. In my never-ending quest to find someone who'll address this, Montoya's name cropped up (but only as author of a summary of treatments).

    Still, it makes me wonder if he would treat someone who does not have HIV/AIDS, nor is pregnant, but has very high IgG titres to Toxoplasmosis.

    I was wondering if you could ask him about this.

    It's a big favor, I know, but it would be really difficult for me to travel out there, and even worse if only to discover he wouldn't touch me.

    Having a baaaad week, feeling desperate...
  10. swedeboy

    swedeboy Member

    Yeah I was planning on asking him if he treats other things such as parasites and bacterias. Mostly because it may be possible that parasites and bacterias are a concern for me.

    Personally I think it would be best if you contact Dr.Montoya directly. His phone number is 650-725-8439.

    Are you on the east coast? I would think other Doctors would be closer, such as Dr. Cheney and Dr. Enlander. A google search will provide their contact info and or websites.

    Peace and Love, Swedeboy
  11. JolieLuLu

    JolieLuLu New Member

    Thank you for your thread!

    I am following your threads closely. Was Dr. M able to even read your current lab results? Im just curious to know if he made any additional comments about your viral lab results from immunosciences other than the one mentioned above.

    Rest up and thanks again.

    Love and light,
    jolie

  12. swedeboy

    swedeboy Member

    Thanks for your comments!

    Dr.Montoya didn't say anything about my recent lab results from Immunosciences other than what was already said in my earlier posts. Other than being the first Doctor to ever discover that I have a swollen lymphnode he pretty much just asked me a few questions about my CFS and that was all.

    Overall Montoya really seemed to just focus on CMV, EBV, and HHV-6 titers (from a focus lab) and my CFS symptoms/personal medical history. However he welcomed any questions I had, so I am now gathering things to ask him on my return visit.

    Peace and Love, Swedeboy
  13. Lichu3

    Lichu3 New Member

    Just FYI, everyone, being an infectious disease doctor means that Dr. Montoya knows about treating parastites and bacterial infections as well as viral infections. It's just that one of his focuses right now is HHV-6; I think his general research area was on toxoplasmosis in immunocompromised patients (as Mezombie found), specifically organ transplant patients (who have to take immune-suppressing drugs to not reject the transplanted organ).

    HHV-6 is a problem for organ transplant patients so that is how he probably got interested in HHV-6. I think it's great he getting into CFS research as I think most of us are generally immunocompromised in one way or another.

    My current personal theory is that whatever virus hit us first (e.g. stomach, pneumonia-like, flu-like, etc.) may not be the main offender ("hit and run") but left people immunocompromised enough that their inner latent viruses started to reactivate and suppress immunity further, prolonging the disease. It's also interesting to note that 1) extreme exercise tends to compromise immunity 2) pregnant women are in relatively immunocomprised state to avoid "rejecting" their babies (dad's genes are foreign to mom's immune system) and that we hear about strong athletes and pregnant women coming down with CFS.
  14. foxglove9922

    foxglove9922 New Member

    Swedeboy,

    It's late and I'm tired but wanted to thank you for posting this information.

    I too will begin down the Valctye road within the next week.

    I will be following your post closely as I hope that all of pursuing these uncharted waters can compare notes.

    Take care and best wishes,

    Foxglove
  15. swedeboy

    swedeboy Member

    Lichu:
    Very interesting post:

    "My current personal theory is that whatever virus hit us first (e.g. stomach, pneumonia-like, flu-like, etc.) may not be the main offender ("hit and run") but left people immunocompromised enough that their inner latent viruses started to reactivate and suppress immunity further, prolonging the disease. It's also interesting to note that 1) extreme exercise tends to compromise immunity 2) pregnant women are in relatively immunocomprised state to avoid "rejecting" their babies (dad's genes are foreign to mom's immune system) and that we hear about strong athletes and pregnant women coming down with CFS."

    I think I read something similiar to this by Dr. Bell in the Lyndonville newsletter.

    Also the stuff about Montoya makes sense, I was thinking that he was well experienced with parasites and bacteria too.

    Foxglove:
    Thank you too!


    Peace and Love, Swedeboy
  16. Slayadragon

    Slayadragon New Member

    I was pregnant when I got sick. That's very interesting.

  17. swedeboy

    swedeboy Member

    I was an athlete doing an extreme amount of exercise at the time my CFS started. Yes I agree Lisa, it's very interesting!

    [This Message was Edited on 02/06/2007]
  18. cherylsue

    cherylsue Member

    I think Lichu hit the nail on the head. I had mono when I was 5 years old. I had a terrible flu for which I was hospitalized in 2000 and now have remitting/relapsing CFS. When I get too run down/sick, it, or something reactivates.

    CherylSue
  19. keke1972

    keke1972 New Member

    I started taking valcyte yesterday. The dosage I am taking is(2)450 mgs. 2 times a day for two weeks then 450 mgs. 2 times per day. I will also let everone know how I do on the medication. I saw Dr.Levine on Monday. My insurance covered the medication. I was actually really surprised considering how much the medication costs. For some reason the pharmacy only dispenced two weeks worth of valcyte. I hope my insurance doesn't try to only give me two weeks worth. I will wait and see. I will get more of my lab work back in one week. I will keep everyone posted. Take care everyone
  20. foxglove9922

    foxglove9922 New Member

    Hi keke,

    Wow, I don't think I have enough fingers to count how many people on this board are starting the Valcyte. How wonderful we have each other to share our thoughts and experiences.

    Swedeboy, I too tend to agree with your theory. I also think we may be genetically predisposed. My mom has fibro (mild) I have had CFS 5.5 years and my 19 year old daughter never recovered from a bout of mono and missed 48 days of school that year and finally was diagnosed with CFS, however, fortunately her symptoms are a little milder than mine and her lab history also reflects this. She seems to be on the mend and neither one of us can figure out why,,,,,but,,,,am happy that she is enjoying a little higher level of living. She still does the push/crash thing as she just wants to be a normal teenager.

    For those of us going down the Valctye road, could we use Valcyte in the Title,,,,it helps to pick out what some of us are looking for as far as information as there seems to be a few of us heading that way.

    best wishes to all,

    Foxglove