status of Montoya's early patients

Discussion in 'Fibromyalgia Main Forum' started by terrilynnb, Mar 9, 2007.

  1. terrilynnb

    terrilynnb New Member

    Does anyone know the current health status of the original study patients from Montoya's earlier study group. I know the founder of Petsmart who had all the media attention was back to hiking but I wonder if he is still doing well or has anyone read or heard about anyone else who improved in that group and how they are fairing now??
  2. ravenpaige

    ravenpaige New Member

  3. gasolo

    gasolo New Member

    I'm also interested in that information. what is BUMP?

    Gary
  4. Shalala

    Shalala New Member

    I was wondering the same thing ... I am always bumping (into something)
  5. ravenpaige

    ravenpaige New Member

    To answer "What is bump": bump is just a way to put the post back at the top of the list. Of course, answering anything to a post puts it back at the top of the list, but if you don't have any new information to add, but would like to give others a chance to see the post and respond, then you "bump" it.
  6. violet1235

    violet1235 New Member

    I would like to know also. Since Dr Montoya asked me to do the study last month. I want to know if anyone here has done the study.

    Violet
  7. Slayadragon

    Slayadragon New Member

    I'm writing another post for you mentioning all the people on the board who have tried Valcyte. That may help you to see what they've written and ask questions.

    Welcome to the list and good luck to you. I'm glad you found your way here.

    Best, Lisa

    [This Message was Edited on 03/12/2007]
  8. gasolo

    gasolo New Member

    I,m not sure I can help you since Dr. Montoya not my physician. I'm starting my fifth week of Valcyte and I appear to be over the worse of it in terms of the herxing reaction. I'm using the same protocol in terms of Valcyte dosing as Montoya. Unfortunately there are no good cfs physicians in my area so I decided to treat myself (I am a physician). Weeks 3and 4 were difficult and required nearly complete bed rest. Fortunately my wife is a nurse and I have a very supportive family.

    Gary
  9. Slayadragon

    Slayadragon New Member

    I'm glad that things are starting to ease up for you and hope you feel some progress soon.

    Best, Lisa

  10. PGWS

    PGWS New Member

    As of last month I found out some info from source regarding Dr. M patients. Bear in mind, every one's
    idea of recovery/going back to work/lifestyle differs. That is why my query to the person as to my expectations, may be different than others, so please don't be offended if it appears that I am expecting allot and don't mean to offend others, who may be in a different situation than me. Here it goes:

    My question to source: Is this drug actually really helping people you know or is it just allowing bedridden people to get out of bed and walk around or climb a few stairs, think a little more, work a few hours. I am getting very discouraged and I would love to hear some inspiring or truthful information. I understand everyone is individual but I do not consider "getting better" to be able to get out of bed and walk around the house or walk up a few stairs, maybe others do, especially since I am in this alone/no help/Must be again the Bread winner. I expected more of a recovery as he (Dr. M) described the women Ice Skater as one of his cases) as I was a stellar athletic and successful professional prior to my getting CFS. I know people respond different, but is this uncommon for someone at 13 weeks to feel no difference? He speaks of starting to feel better after 4 weeks. Are my expectations for wellness unrealistic?

    Source Answer: Most of M’s patients went from not being able to work, to working full time again. Small, small # have relapsed but not feeling as bad as before taking vct. One did not feel better until the 6th month. Most take at least 4 months.

    Source went into more detail/theory as to why it may take longer, but I do not want to repeat something like that, since even they M, can't be sure at his point, but the theory did make sense.

    Please use your discretion in repeating this to others on and off this site etc. I certainly was not jumping up and down with joy after hearing this. That is why I have been researching myself and from others to find out more. Therefore, I just added additional info on my original thread, which may be helpful to some.

    Dr. L is also treating about 12 patients (she is trying to keep it small), I am on it the longest, most just started about a month or two ago, so I will also be asking her about the other patients progress (she is incredibly candid & honest). She did tell me that Dr. M sent her one of his patients, who moved from CA, she is now treating, has been on vct nine months, she has had CFS for a very long time 15+ years. Briefly, she was bedrdn, now she gets out of bed, walks around.
  11. Slayadragon

    Slayadragon New Member

    This is consistent with what my doctor has been telling me---that the antivirals need to be part of an overall treatment plan that addresses all the problems that CFS sufferers have rather than a stand-alone.

    I managed to get from 10% to about 60-70% using treatments other than antivirals. I know that not everyone can accomplish this, but my observations suggest that a lot of CFS sufferers do not try a variety of basic things that potentially could improve their health status.

    I summarize my doctor's theory (as of early January) in my post called

    My Strategic Approach to Using Antivirals (Valcyte etc.)

    I am in the middle of summarizing all the treatments that have worked for me (and that I plan to use once I am done with the antivirals). I am absolutely classic CFS (except for pain), and a lot of the things I've done seem to be helpful for others based on the continuing reports I see on the board.

    I will put this on the "What Worked for Me" thread at the top of the board, as well as on my current Famvir status report, when I am finished with it.

    It may be possible for people to achieve full health with Valcyte alone. However, my personal view (based on what I know at this time) is that if it is used this way, the time that one will need to be on the drug will be longer, recovery may continue long after the drug is finished for some people,, and the chances of recovery will be lower.

    Obviously Valcyte (and other antivirals) do something, and I believe they have the potential to do something very good.

    To believe that they are all that is necessary may not be the best strategy for those who want to get truly well, however.

    Again, this is just my opinion and that of my doctor. This is a new enough treatment that this opinion may be wrong, of course.

    In another year or two, we'll have a much better idea of what works and what doesn't. Those of us who are trailblazers are going to have to deal with a lot more uncertainty, of course.

    Best, Lisa

  12. Slayadragon

    Slayadragon New Member

    BTW, I'd really really really like to hear Dr. Montoya's comments/theories about Valcyte.

    Obviously they are relevant to our decisions about whether and how to use the drug, since we all will benefit tremendously from knowing what the experts are currently thinking even if they do end up being wrong.

    If you would share what you found out, I would be really appreciative.

    Thanks!

    Best, Lisa
  13. Slayadragon

    Slayadragon New Member

    Also, 13 weeks is a very long time to feel bad, as I know from my experience on Famvir. (Oddly, my experience with herxing on Famvir sounds almost as bad as many people's herxing on Valcyte. It will be interesting to see how bad I feel once I switch to Valcyte.)

    Moreoever, it seems that Valcyte and other AV's directly affect the mood, making everything seem more out of control and depressing. Your discouragement about never being able to do more than just walk about the house may be partly attributable to the effects of the drug (especially since a lot of people have made an awfully lot more improvement than that).

    Month four seems to be the low point for a lot of people, based on everything that seems to have been reported so far. While some people start to improve at that time, many take a little longer, based on what I've heard (on the board and from my doctor).

    I am keeping my fingers crossed that you will experience an upswing soon and then make a lot of progress soon afterwards.

    Best, Lisa

  14. Slayadragon

    Slayadragon New Member

    Honestly, how many diseases that plague people today have true cures?

    If others that have received billions of dollars in research do not have cures, why would we expect one to come along for CFS?

    I just want to get as well as I possibly can using whatever means are available to me at this time.

    Once I feel like I've done that, I will live my life with as much grace and dignity as possible within whatever constraints I still have.

    i can't expect any more, and remaining unhappy about wherever I end up is just Wasting Time.

    On the other hand, if I don't do everything within my power to get as well as I can, that seems to me to be Wasting Time too.

    That's just my own approach to life though. Others obviously have different ones.

    BTW, despite your drug debacle, you seem to be in fairly good spirits recently, Stovetop. I am very glad to hear it.

    Best, Lisa

  15. Lichu3

    Lichu3 New Member

    If Valcyte treated but did not cure CFS, I'd still be extremely happy with it. I just want some of my functioning back.

    Medicine has few true cures but there are very effective treatments for many conditions. For example, we can't get rid of (e.g. "cure") diabetes, asthma, or MS but the medicines now available allow people to live longer and maintain function.

    Infectious diseases and oncology are two areas where "cure" is possible - kill the germ or cut out the cancer (if limited in spread). However, with the herpes bugs involved in CFS, which were probably present in us BEFORE we came down with CFS, they'll likely always be there. Valcyte probably suppresses bugs enough so that immune system is able to recover and fend for itself.
  16. acer2000

    acer2000 New Member

    Where are you guys getting 4 weeks you should be seeing improvement? I read it takes 6 months on it to feel significantly better.
  17. shar6710

    shar6710 New Member

    I have to agree that an actual cure may be impossible for some. As with anything, individual results may vary.

    PGWS, it is hard to respond to your comments without knowing how functional you were before taking Valcyte.

    IMHO going from bedridden to walking around some would be a huge improvement. This coming from my experience of being mostly bed ridden for about 2 months straight each year. For people who have been bedridden for years I would think walking around some would be welcome even if they never improved beyond that.

    Of course I understand your point that you need to be better than that to earn a living but still it seems that any improvement is better than none. Isn't it?

    Shar


  18. Slayadragon

    Slayadragon New Member

    My knowledge about cancer is that it is never considered cured either.

    Rather, patients go into remission and hope that it doesn't come back.

  19. terrilynnb

    terrilynnb New Member

    I know I would be thrilled if it were found to be a treatment that would enable me to function even at a fraction of the old days. Since I have stopped working and started walking a little, that is ALL I CAN DO. Can't even return a phone call or do anything the rest of the day if I tak e alittle walk. I hate to have to chose between functioning ok if I do nothing but work, or not functioning at all if I try to get my strength back a little. Many people with diseases like diabetes and cancer hoe are receiving treatment are able to function way better those of us with CFIDS and live a more normal life. I know that it has been frustrating for me to watch people who have have life threatening illnesses be able to do so much more than I can-I am happy for them but frustrated that what we have won't kill us just interferes with our lives so much. so, yes, I would be thrilled if treatment could put the symptoms into remission even if it is not a cure.
  20. ravenpaige

    ravenpaige New Member

    Good to see you.