Information from Stanford
HI Friends!
Since I live in California, I am on a waiting list at Stanford Infectious Disease Clinic. There is a Dr. Jose Montoya there who is doing research with CFS. They are treating patients with an anti-viral antibiotic called VALCYTE. They say about 70% of the patients respond positively to the treatments. It is apparently a powerful drug as some people have a hard time with it.
On of the things they talk about is how critical it is for those of us with CFS NOT to over do and go into a crash. They are "hypothesizing that these crashes, or episodes of heightened fatigue, may have acumulative effect on a patient's health, and may compromise potential for full recovery.... " As a result of a crash episode "Central Nervouse System (CNS) cells are damaged and may never recover.... This may prevent the patient from fully regaining cognitive and physical capacities."
Now they are talking about not over doing it when in recovery mode while on VALCYTE, but if their theory is accurate, we should all be doing whatever we can do to prevent crashes from occuring. I did not realize this and am going to take it to heart because, as my husband says, as soon as I start feeling better I over do it and, holy crap, I wind up crashing. So, now I will be even more careful and mindful and rein myself in when my energy does return and be VERY careful about my activity level.
I don't know if there are other medical centers around the country who are trying this treatment, butif there is a solid medical center around you or your doctor wants information about this s/he should contact the Stanford Infectious Disease Clinic at 650-736-5200.
Good luck in the New Year with learning about things that will help us !
Love and Warming Hugs,
Denise
Since I live in California, I am on a waiting list at Stanford Infectious Disease Clinic. There is a Dr. Jose Montoya there who is doing research with CFS. They are treating patients with an anti-viral antibiotic called VALCYTE. They say about 70% of the patients respond positively to the treatments. It is apparently a powerful drug as some people have a hard time with it.
On of the things they talk about is how critical it is for those of us with CFS NOT to over do and go into a crash. They are "hypothesizing that these crashes, or episodes of heightened fatigue, may have acumulative effect on a patient's health, and may compromise potential for full recovery.... " As a result of a crash episode "Central Nervouse System (CNS) cells are damaged and may never recover.... This may prevent the patient from fully regaining cognitive and physical capacities."
Now they are talking about not over doing it when in recovery mode while on VALCYTE, but if their theory is accurate, we should all be doing whatever we can do to prevent crashes from occuring. I did not realize this and am going to take it to heart because, as my husband says, as soon as I start feeling better I over do it and, holy crap, I wind up crashing. So, now I will be even more careful and mindful and rein myself in when my energy does return and be VERY careful about my activity level.
I don't know if there are other medical centers around the country who are trying this treatment, butif there is a solid medical center around you or your doctor wants information about this s/he should contact the Stanford Infectious Disease Clinic at 650-736-5200.
Good luck in the New Year with learning about things that will help us !
Love and Warming Hugs,
Denise
Replies
Hi Denise.I am familiar with Valcyte.It is used to treat the liver virus CMV better known as cytomegalovirus.My blood tests have always shown evidence of this virus and also EBV also known as epstein baar virus. A couple of yrs ago I read about research and treatment of cfs with this medication valcyte and also valtrex.Valcyte for the cmv and valtrex for the ebv.My doctor gave me valtrex but would not give me the valcyte, stating that it was a high risk for the liver.I gave him several research papers explaining the treatment of cfs with these antivirals.I had glandular fever (ebv) before I developed cfs.My blood tests show that both viruses are non active.There are mixed opinions on these viruses reactivating in the body and not being detected.Another whole story there.So exhausted and down today I feel like I am damaged for life.Keep trying and just keep on getting bowled down again.Sorry should have waited until I was in a better headspace to comment.Thanks for your journal and input regarding the antivirals.
Sorry my comment ended a bit blunt, not like me at all.So sending you hugs too.Love and gratitude Di xo
Hello Dear Di---- Oh! No need to apologize about signing off as you did. I never even gave it a thought. It was clear that you are feeling trashed and didn\'t have much energy toput into that communication. No big deal on my end. Hey - if anyone gets it, I do!
So you were aware of the anitivirals. Yes, at Stanford they talk about being sure that your liver values are checked frequently while on the Valcyte. I guess the valtrex that you tired wasn\'t helpful... Too bad.... I think what happens for me is when I get a virus, flu whatever happens to be circulating it digs in and then triggers the EBV and I go into a big crash. I don\'t usually crash unless I\'ve been exposed to a new virus and then the whole awful cycle begins again.... unless I\'ve \'over done it --- then I can crash in a big way...
I am so sorry you are feeling so defeated and \'damaged for life\'. It is such a demoralizing experience. I have been re-reading Kat Duff\'s \"Alchemy of Illness\". She was a psychotherapist who crashed with CFS. Writes an eloquent book with much research on metaphisics, symbolism, Buddhist and other philosphy\'s views on illness, and suffering. I was reading afew sections and was reminded of the need to just surrender to what we are going through, and, in doing so, we are liberated from the fight, the battle. I have found this to be very true. It\'s not always easy toget there, but once I can just say to myself \"OK, I am not in control of this. It is as it is and this is where I am right now\" then I seem to be lifted from the struggle. The angst dissolves. The illness doesn\'t, but the torture of myself does and I find some equanimity. The other thing her book remminded me of was this: she is talking about being so upset that she could not go to a meditation retreat as she was too ill to sit upright for any length of time. Then, as she was falling asleep that night, realizedd that her illness was her spiritual practice at that time.
It helps to be reminded of these things from someone else who has been there. So, I wish you moments of this kind of peace and equanimity in the midst of your collapsed state. I am so saddened that there are so many of us stricken with this disease, but I have to keep searching for ways to cope with it. Reading Kat\'s book is one little way that has helped me reclaim some of my own power amidst these deep feelings of powerlessness.
Sending you much love and hope,
Denise
Thanks so much Denise for reminding me of this truth.Having a spiritual perspective is the only way to go.xo
It really is, isn\'t it? I just wish it wasn\'t so darned hard to find that spiritual connection sometimes! Sometimes I wonder if all this quiet, downtime that all of us are going through is a way to balance out all the chaos in the world. That sounds pretty \'out there\' and doens\'t really help mend the angst of this, but I just wonder what this is all about.... There must be some purpose, some reason greater than ourselves ...... ????? I hope today is a little bit better for you, kind friend. Sending a hug.
Denise, it sounds like a very interesting treatment, and a very hopeful possibility that they are on the right track in considering a viral basis for CFS. I haven\'t heard about this drug before, so I learned something new from your journal. When I first got really, really sick, I always overdid it because it\'s not only part of my personal makeup, but part of the expectations of Western thinking to push through everything and blame one\'s self for shortcomings, including illness. How ignorant is that????? Hopefully we can learn better how to pace ourselves and feel the best we can.
NO KIDDING! I think we have all had that same issue. It\'s cultural to \'pull yourself up by your bootstraps\' and \'just keep going\'. It is so disrepsectful of our humal limitations. I know for myself I would push and push as well, and never with a good outcome! And yes, then feel ashamed for being \'waek\' when I became ill. So, now with this reminder and education from the Stanford theory, w see that it is actually counter-productive and dangerous to push ourselves. It was really helpful for me to read that. I finally \"got it\". Thanks for your response. I hope you are doing OK today and I send you a heartfelt hug.
Denise
OH MB - If you do look into this with your MD or whoever is treating you, be sure they get all the pertinent information as using Valcyte is a drug that requires monitoring of liver enzymes to track any potential liver damage. I believe if your MD were to call Stanford s/he would be able to get their information, guidlenines and the treatment protocol from the Infectious Disease Clinic that Dr. Montoya runs. Even if I get to the clinic, I will have to be really certain that it is worth the try. Liver damage, etc... is not something I\'d like to add to my ailments! HA!
Hi I have CFS and now cancer. I am a research graduate student off work now for a year and half due to CFS. I am 42 years old but continue to do my research at home. I have just written for my thesis an article you might all be interested in. It will be published in the CJOT- Canadian Jounal of Occupational Therapy next year. I worked with Dr. Leung, Neuroscence Occupational Therapist. I hope it will provide more hope and more knowledge to primary practitioners and health care practitioners. Still so misunderstood.
I really was interested in your recounting what Dr. Montoya said about crashes. I experienced that myself.
My doctors told me I could exercise and push myself all I wanted, since my blood work was OK. I did just that, and had a huge crash, which left me disabled. I often think that if those doctors had done their homework and properly diagnosed me, I would still have all those abilities I lost.
This all happened years ago, and I\'ve been trying to regain my capabilities ever since...with limited success. I push myself, but only within boundaries where I know I\'m not going to crash significantly.
I have just come across these comments. The mention of Kat\'s book is
what caught my attention. I\'ve been looking for a book like this that
ties spiritual aspects into this type of illness. I\'ve never thought of us
as \'balancing out the chaos of the world\'. Not that I\'d rule it out.
Maybe the world doesn\'t have enough \'stay at home housewives\'.?
Pardon my dark humor. To me, it\'s not easy to understand any illness or
questions of why people suffer. I guess coming to acceptance does take
off the layer of that question. good wishes for today.
Me too, RichieD. My docs have pushed me to exercise all the time. So I used to go to the gym and push myself for 45 minutes solid on cardio machines and then do weights. Then one day I just couldn\'t do it anymore. It took me forever that this wasn\'t a reason to feel guilt, but to take care of myself.
Denise--thanks so much for posting this information. Such important for us to know! I\'m wishing you the best on the study when you get in.
I remember many many yrs back one silly doctor insisted I try going to the gym.I barely made it into the gym and then when I attempted to exercise the instructors nicely advised me to go see a doctor because there was something seriously wrong with me.They could see that I was extremely weak.