Second Dr. Montoya Visit

Discussion in 'Fibromyalgia Main Forum' started by swedeboy, Mar 7, 2007.

  1. swedeboy

    swedeboy Member

    I had my Second appointment with Doctor Montoya. It turns out that I am positive for a past infection of HHV-6. When I was tested at immunosciences lab the test came back negative. But when Montoya did the Focus HHV-6 test my results were postive.

    However, my antibody titers for HHV-6 were relatively low and Dr. Montoya said that the people he treated with AV's that had low titers like me did not improve from AV treatment. My EBV titers were high enough, but my HHV-6 was too low for him to accept me into his study and or for him to just start giving me AV's. So Dr. Montoya scheduled me for more tests.

    I am being tested for several things, including: HHV-7 and Paravirus, I forget the others, but I will post more when I see Dr. Montoya again and I get the new test results.


    So, I had Dr. Montoya refer me to a Primary Care Physician at Stanford, which he politely did. So I went to my first appointment with Dr. Sharp at Stanford.

    Sharp did not really seem very knowledgable about CFS, however, he was aware of Montoya's work with CFS and AV's. My immediate concern about seeing Sharp was my insomnia.

    I asked Sharp about trying Doxepin and he agreed to prescribe it. I am going to try 25mg Doxepin in a few days. I need to taper off of my daily 100mg desipramine before I start the Doxepin. He also wants me to see a therapist for Cognitive Behavioral Therapy.

    Any suggestions about changing Doctors when you have prescriptions from your previous Doctor that you want your new Dr. to prescribe?

    I take 10mg Flexeril a couple times a week for pain and I am hoping that Dr. Sharp will continue my prescription. He appeared a little skeptical as to why I was seeking out a new Primary Care Physician and then requesting new meds. Oh well that's CFS for you. We still have to educate some Doctors.

    Dr. Sharp is a Primary Care Physcian and he is also a Professor at Stanford like Dr Montoya. I hope the fact that Sharp is a Professor he'll want to research and find out more about CFS, especially now since I am his patient.

    I'll keep ya'll posted on new Montoya stuff!

    Smiles, Sean


    P.S. Lisa, Thanks for the additional glutithione info :)
  2. swedeboy

    swedeboy Member

    Thanks for the great reply! :) :)
  3. Lichu3

    Lichu3 New Member

    Re: working with the PCP. Use flattery if possible. It may help to tell him you were referred to him by Dr. Montoya - this implies that someone respects his work. Or that you thought highly of Stanford. And that secondly, you wanted to maintain continuity of care by having all your med records/ care in one place.

    I would think that they shouldn't have too much problem prescribing you your current meds and I'm not sure why the PCP should have a problem trying out a new med for you. After all, doxepin isn't a a drug associated with drug-seeking behavior (like stimulants, pain meds).
  4. lanya

    lanya New Member

    hi swedeboy,

    can you tell us how low your HHV6 titers were? just wondering what montoya has as a cut off point.

    thanks,
    lanya
  5. swedeboy

    swedeboy Member

    Thanks for the advice Lichu3!

    I don't remember exactly what my IgG titers were to HHV-6, but they were just barely positive. I'm going to get copies of my lab work when I go back.
  6. terrilynnb

    terrilynnb New Member

    Swedeboy,
    I just read your bio and it is amazing to me how many of us were serious adrenaline junkies-runners, bicyclists, etc. and get so much worse everytime we try to exercise. That is what blows me away that anyone would have the nerve to call this depression. If you are depressed, exercise helps not worsens the symptoms. I am so sorry that you had your hopes up that you would be able to be treated by Montoya and hopefully finally get some relief.
    So were you able to get an appt. with Montoya with HHV-6 neg. bloodwork? How long did it take to get an appt. with him?
    Did you happen to ask Dr. Montoya if he thought that Nexavir would do you any good if your EBV titers were up but not the HHV-6?? I wonder if he has used Nexavir, or is he only interested in treating patients with high titers in both HHV-6 AND EBV?
    I live about 4 hours from Stanford so can not be in the study but because I can't find a physician near me who knows anything about CFS, I am trying to make an appt with Montoya. The problem is, I can't seem to get a lab near here to do the HHV-6. I did have Quest draw the blood to send to focus to run, but somewhere along the line, they lost my blood so I have to start over.
    Do keep us posted so on your follow up visits and how things go with the new PCP.
    I just know that someday when we regain our health, and I am out hiking, I will see you running by me on the trail-we need to believe this!!!
  7. swedeboy

    swedeboy Member

    I think if you contact Montoya's office and tell them that you have CFS then they will schedule you an appointment. here's a link to Montoya's info: http://www.stanfordhospital.com/search/PhysicianDetail?doc=1072
    His office number is 650-725-8439
    where do you live?

    Best wishes! Hope to see you on the trail some day!
    "Go easy and if you can't go easy, then go as easy as you can."
  8. shar6710

    shar6710 New Member

    Well doesn't that suck.

    I was rooting for you to get into the study. Hopefully the other tests will give Montoya another clue to the root of your illness and he can start some kind of treatment.

    I've never had trouble getting a new doc to refill meds for me. I usually take in my bottle or refer them to the copies of my records.

    Please keep us updated on your test results.

    Shar
  9. grace54

    grace54 New Member

    I read your bio and wanted to drop you a line. You are about my sons age and you got sick so young. I guess i dont see too many young men stories with cf and yours is facinating. I was about 45 when I started going down hill.

    My kid and I are /were adrenaline junkies. he sno- boards and is a climber and other various things that are dangerous:) I was more of a work aholic and the harder I worked out the better I felt. I now see it as part therapy as I had depression, nervous issues most of my life but didn't realise it till I couldn't run anymore. Boy what a huge adjustment especially for those who were very athletic.

    I give you much credit for your attitude as we really do need to feed are brains with good thoughts. I choose to believe we are on the cutting edge of this nasty disease and that we will get better. As you are a young man there is much hope for you.My thoughts and prayers go out to all of us here. keep up the fight my friend
  10. swedeboy

    swedeboy Member

    SHAR, thanks for the advice!

    GRACE, thank you for the uplifting comments!

    CAT, Montoya has not discussed any treatments for my EBV. I plan on discussing treatments when I go back in April. He just said that people don't respond well to the AV's who had low HHV-6 titers, but he also said a larger study needed to be done to really prove this. According to Montoya the few people who didn't get better from the AV's were the ones who had lower titers to HHV-6.
  11. Lichu3

    Lichu3 New Member

    The article in the Journal of Virology from Packfan's post weeks ago (he provided full-text access graciously) shows that all 9 responders had HHV-6 more than 1:320 (which HHV-6 Foundation believes is sign of active infection). However, after treatment 4/9 folks either had no change in their HHV6 IgG and 2/9 actually had INCREASES in their IgG. The more consistent finding though is that 9/9 had decreases in their EBV IgG. The IgG levels in the non-responders stayed the same.

    So, again these are very small numbers, but to me, they would argue that the story with EBV is not over yet and HHV-6 high titer is one marker of possible response but that there may yet be other viral factors involved. Remeber there's about 10 or so other people that he's treated not published in this report. That's probably why he's testing for other viruses.

    I had a similar problem directing my bloodwork to Focus from outside lab so I will try to get blood drawn directly at a Quest diagnostic lab as Quest owns Focus.
  12. swedeboy

    swedeboy Member

    Yeah, That makes perfect sense to me.
  13. cct

    cct Member

    Thanks for keeping us updated on your experiences with Montoya.

    I am happy to hear that he did not dump you after your HHV-6 test results came back too low for him to include you in his study.

    So many other doctors would have said "Thank you for your willingness to participate in our study, but you do not fit into our research parameters, so good-bye and good-luck" !

    It is great that he is running more tests on you for other, even more obscure, viruses. I am anxious to hear what your results are on the new tests.
  14. Slayadragon

    Slayadragon New Member

    Try taking a look at ask2266's posts on my Famvir threads, as well as her bio. (I know she's posted on Weeks Fifteen, Sixteen and Seventeen, and maybe on some others as well.)

    She has been doing extremely well on Famvir (improvement from 45% to 80% in 10 weeks). She was measured as having elevated EBV but not HHV6 too.

    I'm still wondering about the idea that you could have picked up something weird (and not necessarily viral) on that Hawaii trip.

    On another topic, the Stanford PCP sounds a bit arrogant to me.

    Since you don't seem to be able to find any CFS-knowledgeable internists near you, I wonder if you might be able to find a regular doctor with no particular CFS knowledge who would be willing to work with you on experimenting with things.

    You know enough about CFS at this point that you would be able to educate a doctor if they were willing to listen. Many doctors don't have the time or inclination for that, but some do.

    I can think of several people on the list (forebearance, connieaag, suejackson) who have reported success in doing that. connieaag described hers as a "country doc"---willing to take a bit more time with patients to learn about and try treatments that they hadn't used before, as long as they made sense and had precedence elsewhere and weren't going to be harmful.

    Of course, it's hard to find doctors like that too. But not as hard as it is to find doctors who already know something about CFS and who don't charge huge amounts of money, of course.

    You'd think a doctor from Stanford would be able to easily learn about this stuff, but "quality" practitioners have a horrible track record with this disease. That Mayo Clinic appears to have been the worst, but I've not heard of any other experts from other fields making any progress in it either. Dr. Montoya is the very first, which makes me very grateful to him.

    Anyway, if I were in your position, I would start asking every single person I knew about their doctor's style and their previous experiences. Perhaps then I would be able to identify a candidate who might be friendly and open-minded and experimental enough to be willing to help.

    As a side note, of everyone I've ever encountered (in real life or on the Internet), you seem to me very close to the last person on the list to be likely to learn anything from cognitive behavioral therapy that you haven't put into practice already. (Some people do benefit from that sort of therapy, I think.) Unless you need to do so in order to get proper medical treatment, I wouldn't advise you to burn out your energy reserves on it.

    How are you doing these days? Are you feeling any better?

    Best, Lisa

    [This Message was Edited on 03/09/2007]
  15. swedeboy

    swedeboy Member

    Thanks for the advice/suggestions, it helps.
    I'm feeling about the same. I improved slighty in January and then I fell back. I have been juicing daily (rich carson's recipe) and I think it helped to give me the boost in January. Plus I have been gluten free since January.

    I just started taking 400mg of SAM-e 4 days ago and it gives me terrible nausea and bloating. The SAM-e is enteric coated in an individual foil wrapper. I am going to cut back on the dose tomorrow and or take it with food maybe to help the nausea. It says to take it on an empty stomach, and I'm not sure how important that is.

    Plus I am going to start the Doxepin in a few days. I am thinking that Klonopin may work well with the Doxepin, since Cheney says that they are synergistic. I'll have to talk to my Dr. about adding Klonopin if neccessary. We'll see how the Doxepin goes first. He Rx me 25mg Doxepin.

    Yeah, educating my new PCP Doctor about CFS is weighing heavy on my mind right now. I really hope he keeps an open mind about the latest thoeries and treatments for CFS. I did get a slight feeling of arrogance from my new PCP. Doctor MOntoya did reccomend him, So hopefully he'll work out well. I have heard some bad things about the Mayo clinc and CFS treatments too.

    Personally I think my new PCP would want to know as much as possible about CFS so he can know how to treat it, and also how to educate his students about it. I mean it seems logical that he would want as much experience as possible with his patients, so he can progress and improve the quality of care that he provides. Well it sounds good anyways, hehe.

    We are the pioneers of CFS. One day we will be in the history books as the patients who knew more than their Doctors about CFS and that we had to convince people that CFS is real. BUt by then hopefully it will have a new name.

    Smiles, Sean
  16. lisagra

    lisagra New Member

    hi swedeboy:

    i saw dr montoya also. not all of my tests came back in the range they are looking for but they are still willing to try and help me out too. very refreshing to find docs at a large university hospital taking this disease seriously and dealing with patients compassionately.

    i tested positive for active parvo virus too, so i'm waiting to hear back from dr. k(? montoya's asst) about treatment options.

    i agree with lisap's thoughts about the new pcp.

    don't know if you're inclined but christine green is in los altos on el camino real. she treats lyme and cfids.

    you have to submit superbills yourself...but she is very open to any and all treatments. only prob with her is she spends so much time with her pts. that she's always running VERY late.

    anyway just thought i'd let you know about her.

    also have you had an igenix test for lyme disease. your symptoms sound very lymish...maybe a heavy duty abx protocol would be right for you. dr. green is very up to date on all of this.

    she's also very familiar with montoya's work and is prescribing valcyte to pts who want to try out proto...if they have high titres (of course).

    oh yeah one last thing...i see dr. klinghardt in seattle. we do alternative stuff cuz i can't take the herx from abx...and i haven't really seen much improvement after trying lots of different protos...he has me on hi dose Vit D3.

    I've recently heard about several other ppl trying out this treatment too based on their docs recs. can't say much about it yet. i've only been doing it for 1 1/2 weeks...but something else to think about.

    Green is using this with patients too.

    good luck.

    lisag in berkeley
  17. sascha

    sascha Member

    the picture of you in a triathalon alongside your posting on CFIDS/FM website makes a powerful statement of how this disease undercuts our lives.

    i am in process of getting an appointment with Dr. Montoya. i'm not convinced about the valcyte approach- but i really want to find out about the presence of viruses. if i do test positive and meet Stanford's criteria for treatment inclusion, i'd probably go for it. it's worth trying something that might get me back on my feet. my life has been at one-tenth power for so long; i am missing so much; well, you know! it's miserable.

    i hope we keep hearing of people's experience with Dr. Montoya, AND also from those doing the valcyte treatment. i look for posts everyday.

    very best to you- Sascha
  18. swedeboy

    swedeboy Member

    Thanks for the suggestions about Igenex and Dr. GReen. I have been to Igenex and I had a ton of LYME tests from them and they were all negative.

    ow much does Dr.Green Cost. I am on medicare and Medi-CAl and they don't accept super bills.
    I geuss I stand corrected about there not being a CFS specialist in the Bay Area, I just thought Dr. Green was more of a LYME specialist.

    [This Message was Edited on 03/10/2007]
  19. PGWS

    PGWS New Member

    Hi Empty void, I am Please Get Well Soon,

    I am on Valcyte for 4 months via Montoya's protocol with Dr. Susan Levine in NY (she is the best for those who are in the Northeast). How were you tested for HHV6-A? Were you also tested for HHV6-B. The information on the HHV6 Foundation- website who actually spear head all the research/studies with Montoya (i.e.Dharam Ablashi). When referring to HHV6 there are actually two components the A & B. The way I understand it is that Valcyte is going after EBV & HHV6-B. They are now researching drugs, one in France CMV432 (others on the market but not as good) that they feel has the bomb to blow out the HHV6-A. Did you get tested for both A & B, if so, how and by which lab. I am currently getting more labs done, one being to test for HHV6-A and I was curious if yours was done through Red Labs or Focus. There is also allot of differing opinions if you can really test for HHV6-A in the blood; may have to be done via the spine. I have EBV, CMV, HHV6, Mycoplasma Pneam, Chlamydia Pneum (Started Biaxin-Anti-Bacterial Drug for the Pneum group), and all the other cell issues low NK (on compounded Naltrexone liquid suspension for this). I have not posted in awhile because I have been quite worn out, so I was happy to see someone else is doing the Valcyte longer than me (if you want to hear my story I have a thread, otherwise I won't bore you.

    How are you doing Mentally & Physically compared to before the Valcyte? How long did you have it? Aside from Blood test improvements have you felt better. If you started to feel better, when did it start? How long did you have it? I have posted before so I will only say that I am at 4 months I have seen only minor improvement in the way I feel(probably more mentally) although at week 11 my EBVVCA stayed the same at 1:640, not good, my EBNA went down from 1:320 to 1:20, pretty good, my EBV Early went down from 1:320 to 1:160, just OK, my HHV6 went down from 1:2560 to 1:1280, good but mine is extremely high, my Interleukin 2 Receptor went from 1028 to 995 (still high), my Lymphocyte Subset Panel (CD3/4/8-cells) are now normal, that's great if it stays that way. I am awaiting other results CMV, NK cells and going to get more done such RNAsel via Red Lab and hopefully HHV6-A. Even though the tests have shown some improvement, I had hoped I would be doing better at this point. I definitely don't get sick as much and barely ever swollen glands, but still very fatigued, especially when I try to step up a notch and still need that 10 to 12 hour sleep. Dr. Levine spoke with Montoya about pulsing me up again to the 21 day initiation dose or a step below, because I felt good very soon on the Valcyte at that time, but he was concerned about my becoming resistant. I will keep going with the Valcyte and hope to add another antiviral for the HHV6-A if possible. That is why I am very curious how you were tested for this and what about HHV6-B? I am 47 years old, I have had it 5.5 years, Interested in hearing your response, since there are so few of us doing the Valcyte & also doing it based on Montoya's protocol. Dr. Levine is also trying other things for me as I mentioned, because I requested and wanted to attack everything possible and I have confidence in her judgement, since I must get better very soon to go back to work.
    Also, how often is Montoya doing the Viral testing, we are doing it about every 2 months.
    Thank you. I would really appreciate your response and be happy to answer any of your questions. You sound happy, I hope you are recovering.
    If I have confused you with this HHV6 A & B stuff and my brain fog, refer to the HHV6 Foundation website www.hhv-6foundation.org or the written journals based on their research "Highlights from the 5th International Conference on HHV6 and 7".
    www.ihmf.org/journal/download/HHV-6Repert.pdf.

    [This Message was Edited on 03/10/2007]
  20. slowdreamer

    slowdreamer New Member

    Hi Swedeboy,
    I was interested in your post because many yrs ago when I was 27(1974) I travelled overseas, got a virus and ended up in various beds and a hospital in Ireland.A doc in Cambridge prescribed Doxepin and I slept lots ..Well I did recover after coming home and living an easy life with clean food and air.

    After 2 yrs I went back to a busy life still not having any name for my episode..I just assumed the virus had damaged my immune and or nervous system.
    Lived at a mad pace including crosscountry skiiing, studying and teaching..Whenever I got a virus however I had a relapse and couldn't get over it without a short course of very low dose Doxepin..
    Youth is on your side I hope you get some good results..I see by your biog you have had a rough time.
    [This Message was Edited on 03/10/2007]