Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Sep 30, 2008.
does anyone know how clo1 is doing?
I talked to Clo a couple of hours ago. The good news is she had an outing this weekend thanks to her SO and a travel wheelchair and that always helps our spirits however she is still not doing to well and will be going back into see Dr. Montoya as soon as she can get an appointment. We also talked about her talking to her PCP about getting a power chair I hope she follows through as it has really been a big help to me. I'm sure she will appreciate your concern. All my best to you as we travel this difficult path together. Fondly Joyce
dear sue, thank you so much for your thoughtfulness in asking after me...obviously you have noticed that i have dropped-off of late; i have been doing SO poorly that my spirits have been really flagging and now that the impact of my failure on valcyte has truly hit me, i feel a lot of hopelessness...everyday seems to be filled with weakness, discomfort, pain, malaise, brain fog...i am virtually bedbound; however thanks to joyce's advice, paul and i rented a wheelchair for 2 days and we took a couple of short outings...but even those were too much for me, which was very discouraging...in the last 2 years of this relapse, i have not had a good day or even a better day...i think i had a few "less worse" days back in december, but they were fleeting...
i do follow the board from time-to-time, and am always encouraged by the improvements of others and am really glad to see that you have made some progess...i am taking acyclovir 800mg/day which dr. montoya says is the same as taking valtrex 500mg/day; but i have gotten no relief from that...again sue, thanks SO much for thinking of me...you've no idea how much that means! love, clo
clo...is there any conceivable way for you to travel once or twice to consult with dr. lerner?
i am greatly saddened to hear you aren't well....and i know how it feels all too well.
i also am not doing too well....some days i am 5% better, some days up to 12%..i am still praying i am on the right track.
i wish so much there was some way i could help.
love and hugs
Of course there is a way, everyday you will be able to see DR. LERNER . Why just look at our young men and women whom he sends back a forth every day. God told me to tell you "no matter how be how much or little or the pain is, the journey of a thousand miles always starts with a single step.
God be with all of you always and remember who built this world!
I know how you feel. I've been going through those same emotions since Valcyte failed to help me. I'm glad to hear that your SO is helping you and you got out for a bit. I'm thinking of you and sending good thoughts your way.
there is just no conceivable way for me to get from california to michigan...i cannot even be in a car for more than a half-hour and even that is too much...i cannot imagine flying in this state of decrepitude!! i still have access to dr. montoya (albeit not easily!)...i hope to see him sometime in november or december, if i can get an appt...
in the meantime it's always good to hear from you and i know that you are struggling as well...everytime i see that you have gone up by even a few percentage points i feel very heartened by that news...love, clo
dear tee, thanks for your kind words and it sounds like we are very much in the same boat...in some ways i actually feel worse since the valcyte; my lungs are particularly uncomfortable...hard to find the right words to describe...i also had 2 major hospitalizations this summer (for acute pancreatitis; the first time caused by a medical procedure; the second time caused by a gallstone)....which no doubt have made everything even more challenging!
i have stayed off of the board because i have much of the time felt just too weak to interact...also because i don't like to be the bearer of bad news, especially for people who are just starting valcyte...
i think that you and i are in the minority though...from everything i've read here over the last year and from the preliminary trial results, i would "guesstimate" that about 70% of patients have some major improvements and about 30% do not...what do you think? love, clo
clo - its so good to hear from you. I understand your despair well, this is the biggest challenge most people would ever face!
Please know that I pray for all of us on the boards everyday and for our doctors. I am pulling for you to get back into seeing Montoya soon.
Don't feel as if you need to respond back as I know the energy drain it takes to even do that. Just know we are here for you.
Sending you warm hugs,
big hugs to you.
i am so glad you have access to montoya. he is open-minded and listens (from what i have heard).
you will be in my prayers..
I appreciate all you've said.
Clo- I was under the impression that most people didn't improve much on Valcyte and some feel it's made them worse. I do think some improved but if I was looking at doing it now, given all that's out there to read about it, I wouldn't take it.
This certainly is a far cry from those initial incredible results that Montoya first got. I also have a lot of respect for Dr. Bell and he thinks Valcyte didn't work for us PWCs as a group. I recall hearing that Montoya said that some PWCs who had responded relapsed. I was not encouraged by the results of the trial either. I'd really like to know how those first responders are doing now. I hope they're still well.
I'm so sorry to hear about all you've been going through with your health.
Hugs and prayers,
i still think a lot of time on antivirals is needed. check this out:
this person says she was on famvir for 6 years before she got better!
sorry..don't mean to be a broken record...
kelly, thank you so much as usual for all of your well researched and thoughtful suggestions...i actually don't use a nebulizer, but i have an inhaler (steroid based), which helps somewhat with the breathing challenges...it's just SO frustrating, as you well know, because nothing really definitive showed up on my pulmonary function tests...i'm pretty sure it's inflammation; but what to do about it is another issue...i did test positive for Mycoplasma pneumonia, but dr. montoya felt that the titers weren't high enough for abx treatment...thanks again and i always appreciate your ideas, clo...
tee, good to hear from you and SO sorry you are in such a similar situation...it seems to me,(and of course i could be way wrong) just from the board, that many people have gotten MUCH better on valcyte - dhamma and her daughter, kathy 622's daughter, gasolo (gary), cat003, deserella; others have improved somewhat: sascha, stschn (joyce - cognitively i think), kelly, timaca...and i cannot remember the names of some of the others because they have dropped off the board...when i think of those of us who have not benefited at all, it seems like a smaller number...but obviously this is a very unscientific survey and i am just going by a sort-of gut feeling...anyway, always good to hear from you! clo
[This Message was Edited on 10/04/2008]
dear sue, thanks for the big hug! and i appreciate your tenacity and perserverance, so you DON'T seem like a broken record to me! i am just such a poor responder to antivirals...although i plan to stay on the acyclovir (even though it seems pointless because it's not helping)...but the valcyte was WAY too strong for my body and i think ultimately did more harm than good...even my bad headaches have started to make a comeback and my cognitive function is still poor! love, clo
I didn't realize that so many people had gotten better from Valcyte. That's encouraging for others. I hear ya Kelly and it makes me think that longer may be better too. I've also heard that some folks don't get better the first time they take Valcyte, then they take it again for 6 months or more later on and respond. It made my lungs worse though and I had to go off due to heart palps so I'm not at all anxious to try again.
if you ever do get the energy to see lerner.....he will outline a protocol for a local doctor to follow if you can't see him repeatedly.
also, he will often recommend a lower valcyte dose for those who cannot tolerate 900 mg/day.
sorry.....i had to bring it up again.....i just have such a gut feeling about it.
love and hugs
it's wonderful to hear that your daughter recovered so well on the valcyte and that she is gradually recovering from lyme disease...i always think of her when i keep a "mental list" of valcyte success stories...
thanks for mentioning those other pathogens...dr. montoya tested me for all of the above, and it seems that the only one that came up positive was Mycoplasma pneumonia...he felt that the titers were probably too low to warrant antibiotic treatment, but i am really beginning to wonder because i have such respiratory problems that nobody has been able to "get a handle on"...i am going to revisit this issue with him, hopefully with a phone call this week...
like your daughter, i fit montoya's criteria to a "T"...and was a participant in the clinical trial...obviously i am one of the 30% or so who did not respond...
great to hear your news, and all the best to you and your great kids...clo
[This Message was Edited on 10/05/2008]
I'm sorry to hear how badly you've been doing. I too got much worse after my 6 months on Valcyte and wish I had never taken it. Ironically, my EBV titers are higher now than when I started Valcyte in July 2007 and my HHV-6 has stayed the same.
Dr. M tested me for Lyme and other bacterial infections in April 2008, and everything came back negative from Stanford's lab.
Around the same time, I got a positive Lyme test from Igenex. I have been undergoing Lyme treatment with an LLMD in the bay area since early May. Although I am nowhere near recovered, this doctor refuses to give up on me, and keeps running more tests to find out why I'm not improving. His testing so far has shown I have high mercury levels, mold, and detoxification problems, and he is treating me accordingly with both prescriptions and alternative treatments.
Incidently my Lyme Western Blot became CDC positive after 3 months on antibiotics, so I don't think there is any question that I have Lyme disease.
I am not trying to force Lyme or Igenex testing on anyone, but would never forgive myself for not sharing my experiences and suggestions if there is a chance that it could be your key to recovery.
Whatever you decide to do, I wish you the best and hope you get some significant improvement soon.
[This Message was Edited on 10/12/2008]
hi erica. i am sorry you are not doing well.
i just wanted to mention that valtrex is now believed to be much more powerful against EBV than valcyte (i have this from 2 very reliable sources).
i did not improve on valcyte alone but seem to be improving a little on valtrex + valcyte.
high mercury, mold, and detoxification problems could be the result of persistent viral infection, which your current EBV titres seem to suggest.
i am very glad you are being treated for lyme!
hang in there....you will find the answers.
all the best
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