Daffodil
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you guys should really get on some HIV meds to prevent relapse, now that you are better! (just my very humble opinion)
Valcyte (plus) Update
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free at last
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Just wanted to say im so glad things are improving so much. Put a smile on my face to see some good news for once. Must feel so great for you, you deserve to be happy and contended, everyone does. but to see it here in writing is just fabulouse news. Congratualtions
Daffodil
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dr. lerner believes, i think, that CFS is caused by herpes viruses...so there would be no reason for him to use LDN if he is already using antivirals.
I disagree though. Even if Valctye and Valtrex have AV and direct immune stimulating properties, so does LDN. We know that it stimulates NKC activity directly, boosting the th1 side of the immune system. What do you have to lose ? The dosage is so low and it is toxic free because of the dosage. It is cheap compared to an AV and does not have their side effects ( I am mainly referring to Valcyte and Vistide).
LDN should not be an after-though, last-ditch desperate attempt of a medication, it should be moved up to the fore much much more. However I also think that it should not be taken alone.
LDN should not be an after-though, last-ditch desperate attempt of a medication, it should be moved up to the fore much much more. However I also think that it should not be taken alone.
mellster
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I have been on LDN now for over a month and also take AV supplements (but no drugs) and immune modulators and it has definitely made an impact. I have days where I feel close to normal and I can do light to moderate exercise. As undcvr said, there are hardly any side effects, I feel a bit of increase in pain right after taking the LDN (which is taken at bed time) and mild sweat and I am plagued with occasionally reactivating tender and moderately swollen gland(s). I think LDN is at least must try for everybody.
SOC
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Daughter is a 10!
Yep, she's fully functional! Not a hint of PENE, not a hint of any kind of relapse. :victory: She gives every appearance of being absolutely fine. She is, however, still taking Valtrex to keep herpesvirii suppressed. I believe the idea is that, for whatever reason, her body cannot maintain herpesvirii in latency, but once they are in latency Valtrex can keep them there -- including HHV-6.
She also takes Transfer Factor Essentials https://www.prohealth.com/shop/product.cfm/product__code/PH170 which is supposed to support immune function and ORAC-Energy Greens http://www.iherb.com/Paradise-Herbs-ORAC-Energy-Greens-120-Veggie-Caps/23550?at=0 which is high in antioxidants and also contains some medicinal mushrooms. Besides that, she takes a good multivitamin with extra B vitamins.
It's hard to know the value of the two immune-supporting supplements. All I can say is that we both feel better taking them and worse when we don't, so we're sticking with them for a while. If daughter stays at a 10 through the next semester, we may try dropping the other supplements over the summer to see what happens.
I seem to be plateaued somewhere around a 5 -- a little better sometimes, a little worse sometimes. That's a huge improvement over 2 or 3 which was where I was when I started Valcyte. A lot of difficult symptoms have improved, which is not easily measured on the usual energy-based scales.
I had a rough setback recently which appears to be the result of a different generic of trazodone than I've been taking for the past 4-5 years. It was ugly -- rash, joint and muscle pain and stiffness (just like the bad ole days), very severe depression and suicidal ideation
, and extra fatigue that may have been depression or poor sleep-related. Thank goodness I'm experienced enough to recognize the depression and suicidal ideation as "not real", that is, clearly just a neurochemical screw-up and not reflective of anything real in my life. I knew I had to grit my teeth and survive the artificial emotional pain until it passed (a bit of tryptophan helped, too ). Still, it was seriously ugly. Back on my original trazodone generic, no depression or extra fatigue, but the aches and stiffness are hanging on and the rash is still there, but clearing, I think.
Valcyte has been, without question, the single best treatment for my family with two returns to full function -- one from about a 7 and one from about 5. I started in the 2-3 range, depending on the scale and am now in the 4-5 range, which is a huge quality of life improvement. Two full remissions and a substantial improvement is good work on the part of Valcyte, IMO.
I'm thinking it's about time for me to be looking for an ME/CFS doc who does more with immune dysfunction than my current doc. As much as I admire and respect him, I'm wondering if I've got as much as I can from his single-focus treatment. I'm hoping I can get an appointment with Dr Klimas or Dr Enlander in the next 6 months or so and get some immune function tests and perhaps some additional treatments.
So hurrah, hurrah, hurrah!!!:victory: My primary goal has been met -- daughter is happy, in full remission, and in love with a wonderful young man (but that's another story ). Now it's time to focus on fighting my battle with this damned illness.
Yep, she's fully functional! Not a hint of PENE, not a hint of any kind of relapse. :victory: She gives every appearance of being absolutely fine. She is, however, still taking Valtrex to keep herpesvirii suppressed. I believe the idea is that, for whatever reason, her body cannot maintain herpesvirii in latency, but once they are in latency Valtrex can keep them there -- including HHV-6.
She also takes Transfer Factor Essentials https://www.prohealth.com/shop/product.cfm/product__code/PH170 which is supposed to support immune function and ORAC-Energy Greens http://www.iherb.com/Paradise-Herbs-ORAC-Energy-Greens-120-Veggie-Caps/23550?at=0 which is high in antioxidants and also contains some medicinal mushrooms. Besides that, she takes a good multivitamin with extra B vitamins.
It's hard to know the value of the two immune-supporting supplements. All I can say is that we both feel better taking them and worse when we don't, so we're sticking with them for a while. If daughter stays at a 10 through the next semester, we may try dropping the other supplements over the summer to see what happens.
I seem to be plateaued somewhere around a 5 -- a little better sometimes, a little worse sometimes. That's a huge improvement over 2 or 3 which was where I was when I started Valcyte. A lot of difficult symptoms have improved, which is not easily measured on the usual energy-based scales.
I had a rough setback recently which appears to be the result of a different generic of trazodone than I've been taking for the past 4-5 years. It was ugly -- rash, joint and muscle pain and stiffness (just like the bad ole days), very severe depression and suicidal ideation
, and extra fatigue that may have been depression or poor sleep-related. Thank goodness I'm experienced enough to recognize the depression and suicidal ideation as "not real", that is, clearly just a neurochemical screw-up and not reflective of anything real in my life. I knew I had to grit my teeth and survive the artificial emotional pain until it passed (a bit of tryptophan helped, too ). Still, it was seriously ugly. Back on my original trazodone generic, no depression or extra fatigue, but the aches and stiffness are hanging on and the rash is still there, but clearing, I think.Valcyte has been, without question, the single best treatment for my family with two returns to full function -- one from about a 7 and one from about 5. I started in the 2-3 range, depending on the scale and am now in the 4-5 range, which is a huge quality of life improvement. Two full remissions and a substantial improvement is good work on the part of Valcyte, IMO.
I'm thinking it's about time for me to be looking for an ME/CFS doc who does more with immune dysfunction than my current doc. As much as I admire and respect him, I'm wondering if I've got as much as I can from his single-focus treatment. I'm hoping I can get an appointment with Dr Klimas or Dr Enlander in the next 6 months or so and get some immune function tests and perhaps some additional treatments.
So hurrah, hurrah, hurrah!!!
:victory: My primary goal has been met -- daughter is happy, in full remission, and in love with a wonderful young man (but that's another story ). Now it's time to focus on fighting my battle with this damned illness.
heapsreal
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Thanks for the update, your daughter sounds like she is going great.
I agree with you that we need to persue something for the immune system.
cheers!!!
I agree with you that we need to persue something for the immune system.
cheers!!!
TheMoonIsBlue
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Hi SOC,
I am so happy for your daughter I hope she stays a "10" and can live a full and happy life.
P.S. I had no idea you had such a severe reaction to that darn Pliva Trazodone.......I really think you should try and email or call the manufacturer and let them know. There are so many people online with horror stories, the FDA should really know. Different generics are often way weaker than others but they shouldn't act like an entirely different drug. I'm sorry this happened to you!
I am so happy for your daughter
I hope she stays a "10" and can live a full and happy life.P.S. I had no idea you had such a severe reaction to that darn Pliva Trazodone.......I really think you should try and email or call the manufacturer and let them know. There are so many people online with horror stories, the FDA should really know. Different generics are often way weaker than others but they shouldn't act like an entirely different drug. I'm sorry this happened to you!
SOC
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@heaps -- Thanks! We are really excited that she is doing so well! She spent a couple of weeks visiting in Europe, walking a lot, not getting enough sleep, etc and is still doing beautifully.
I made an appointment with Dr Rey at Dr Klimas' private clinic in about 6 weeks. We'll see what the immune story is then, I hope.
@Moon -- Yeah, it was pretty bad. I don't know for sure if it was all the Pliva, but I'm doing much better on the APOTEX trazodone (no depression at all) and the rash and muscle aches seem to be diminishing so I'm blaming it all on the Pliva for now.
undcvr -- Daughter was on Valcyte about 20 months. I'm at 23 months now. I don't know how much longer I'm planning to be on it at this time since I'm considering changing approach and working on immune issues. It will be another couple of months at least and perhaps more depending on what Dr Rey finds. Everything's kinda unclear at this point....
I made an appointment with Dr Rey at Dr Klimas' private clinic in about 6 weeks. We'll see what the immune story is then, I hope.
@Moon -- Yeah, it was pretty bad. I don't know for sure if it was all the Pliva, but I'm doing much better on the APOTEX trazodone (no depression at all) and the rash and muscle aches seem to be diminishing so I'm blaming it all on the Pliva for now.
undcvr -- Daughter was on Valcyte about 20 months. I'm at 23 months now. I don't know how much longer I'm planning to be on it at this time since I'm considering changing approach and working on immune issues. It will be another couple of months at least and perhaps more depending on what Dr Rey finds. Everything's kinda unclear at this point....
SOC
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I'm finally getting back to my baseline condition after a really bad couple of months. I'm still blaming the Pliva trazodone since as soon as I got back on the APOTEX brand I've been taking for years I started to feel better.
I'll be seeing Dr Rey at Dr Klimas' private clinic in Miami next week. I'm hoping for some information about my immune status that I can use to improve my condition further. I'm still thinking that it's all well and good to stop herpesviruses from replicating, but if my immune system is doing a lousy job of killing of the already infected cells, it gonna be a long time before the infection is cleared. We'll see what comes of this. Keeping my fingers crossed for some useful new information.
On the good news front:
Daughter went on a 12 mile day hike in rough terrain -- 5 or 6 months after ending Valcyte treatment (she's still on Valtrex). :victory: It's just a shade over 2 years ago that she was so sick that we knew she wouldn't be able to finish the semester. She would come home from a couple hours of class exhausted and fall onto the sofa and sleep for 5 hours every day. She was having OI events so severe she's have to leave class and lie down (or vomit and faint). Now, no more migraines, no more exhaustion, no more PEM. She seems to be every bit the healthy, active college student. :victory:
I don't consider her cured -- remission is the best I'll go with. But it's looking like a strong remission. She's pushed it pretty hard and is doing fine. She's still taking Valtrex and pays more attention than most students to getting enough sleep, so it's not like she can forget about ME/CFS, but I think all of us would be glad to be where she is right now. (Well, not right now because right now she's in an engineering exam. :Sign giggle
I'll be seeing Dr Rey at Dr Klimas' private clinic in Miami next week. I'm hoping for some information about my immune status that I can use to improve my condition further. I'm still thinking that it's all well and good to stop herpesviruses from replicating, but if my immune system is doing a lousy job of killing of the already infected cells, it gonna be a long time before the infection is cleared. We'll see what comes of this. Keeping my fingers crossed for some useful new information.
On the good news front:
Daughter went on a 12 mile day hike in rough terrain -- 5 or 6 months after ending Valcyte treatment (she's still on Valtrex). :victory: It's just a shade over 2 years ago that she was so sick that we knew she wouldn't be able to finish the semester. She would come home from a couple hours of class exhausted and fall onto the sofa and sleep for 5 hours every day. She was having OI events so severe she's have to leave class and lie down (or vomit and faint). Now, no more migraines, no more exhaustion, no more PEM. She seems to be every bit the healthy, active college student. :victory:
I don't consider her cured -- remission is the best I'll go with. But it's looking like a strong remission. She's pushed it pretty hard and is doing fine. She's still taking Valtrex and pays more attention than most students to getting enough sleep, so it's not like she can forget about ME/CFS, but I think all of us would be glad to be where she is right now. (Well, not right now because right now she's in an engineering exam. :Sign giggle
heapsreal
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I'm finally getting back to my baseline condition after a really bad couple of months. I'm still blaming the Pliva trazodone since as soon as I got back on the APOTEX brand I've been taking for years I started to feel better.
I'll be seeing Dr Rey at Dr Klimas' private clinic in Miami next week. I'm hoping for some information about my immune status that I can use to improve my condition further. I'm still thinking that it's all well and good to stop herpesviruses from replicating, but if my immune system is doing a lousy job of killing of the already infected cells, it gonna be a long time before the infection is cleared. We'll see what comes of this. Keeping my fingers crossed for some useful new information.
On the good news front:
Daughter went on a 12 mile day hike in rough terrain -- 5 or 6 months after ending Valcyte treatment (she's still on Valtrex). :victory: It's just a shade over 2 years ago that she was so sick that we knew she wouldn't be able to finish the semester. She would come home from a couple hours of class exhausted and fall onto the sofa and sleep for 5 hours every day. She was having OI events so severe she's have to leave class and lie down (or vomit and faint). Now, no more migraines, no more exhaustion, no more PEM. She seems to be every bit the healthy, active college student. :victory:
I don't consider her cured -- remission is the best I'll go with. But it's looking like a strong remission. She's pushed it pretty hard and is doing fine. She's still taking Valtrex and pays more attention than most students to getting enough sleep, so it's not like she can forget about ME/CFS, but I think all of us would be glad to be where she is right now. (Well, not right now because right now she's in an engineering exam. :Sign giggle
Cool, keep us updated on any interesting news on how u get your immune system going.
cheers!!!
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On the good news front:
Daughter went on a 12 mile day hike in rough terrain -- 5 or 6 months after ending Valcyte treatment (she's still on Valtrex). :victory: It's just a shade over 2 years ago that she was so sick that we knew she wouldn't be able to finish the semester. She would come home from a couple hours of class exhausted and fall onto the sofa and sleep for 5 hours every day. She was having OI events so severe she's have to leave class and lie down (or vomit and faint). Now, no more migraines, no more exhaustion, no more PEM. She seems to be every bit the healthy, active college student. :victory:
I don't consider her cured -- remission is the best I'll go with. But it's looking like a strong remission. She's pushed it pretty hard and is doing fine. She's still taking Valtrex and pays more attention than most students to getting enough sleep, so it's not like she can forget about ME/CFS, but I think all of us would be glad to be where she is right now. (Well, not right now because right now she's in an engineering exam. :Sign giggle
SOC: Congrats on all of your success and recovery! My question is what was your (and your daughter's) Valcyte dosage throughout treatment and also what is your (and your daughter's) current maintenance post-Valcyte Valtrex dosage? Thanks!
SOC
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Thanks, heaps! I'll post about what, if anything, I learned after I see Dr Rey.
SOC
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Thanks! We're very happy with the results so far. Just wish it didn't take so long for me.
We took 1350mg of Valctye, first in divided doses then later in one morning dose (to improve tissue permeability). We increased from 0-1350mg over a week at the beginning to make sure we were tolerating it. Currently Daughter is on 1000mg Valtrex x 4 times daily. That will probably be reduced at some point, but we aren't rocking that boat quite yet.
That kind of dosing requires very close monitoring by the doc for potential side effects like neutropenia and liver problems.
I absolutely would not take Valcyte without that; it's much too risky.
SOC
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Good news: Daughter is still doing wonderfully. No signs of ME/CFS. :victory: She has a full-time job as an engineering intern this summer. We couldn't have even considered such a thing during the past couple of summers.
Bad news: I'm finally starting to develop side effects that may end my Valcyte treatment. After my last labs came in, I was told to reduce my dosage by half. We're keeping the dose but changing to every other day. I don't know yet which lab result is bad, but it's likely either WBC (neutropenia) or liver enzymes. I'm now regretting backing off a bit on my silymarin supplements.
Dr L found a C. pneumonia infection at the previous appt, so I've been taking an antibacterial on top of all the antivirals. That may have contributed to the problem if they're all hard on the liver.
It looks like my timing for visiting Dr Rey was pretty good -- it may be necessary for me to change treatment protocols whether I want to or not.
Bad news: I'm finally starting to develop side effects that may end my Valcyte treatment. After my last labs came in, I was told to reduce my dosage by half. We're keeping the dose but changing to every other day. I don't know yet which lab result is bad, but it's likely either WBC (neutropenia) or liver enzymes. I'm now regretting backing off a bit on my silymarin supplements.
Dr L found a C. pneumonia infection at the previous appt, so I've been taking an antibacterial on top of all the antivirals. That may have contributed to the problem if they're all hard on the liver.
It looks like my timing for visiting Dr Rey was pretty good -- it may be necessary for me to change treatment protocols whether I want to or not.
heapsreal
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SOC it was you who was also have sinus issues?? neutropenia can make one more prone to bacterial and other infections. I am commonly mild neutropenic on blood tests, so not sure if valcyte does this or it would happen if you werent on it. The liver i suppose is a different storie. How long have you been on valcyte for now??
SOC
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I have some sinus issues that have gotten progressively worse over the past 6 months, so neutropenia could be the explanation. Valcyte can cause severe neutropenia, so I get tested every 6 weeks. My WBC has been in normal, if low normal, range all along. Now I'm curious to see if it's been slowly dropping. I'll have to dig out my old lab results.
I've been on a fairly high dose of Valcyte for 25 months so far.