-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Started Valcyte
- Thread starter ABCFS12
- Start date
Timaca
Senior Member
- Messages
- 792
My brain MRI was normal (twice). My brain spect was abnormal. My valcyte journey can be found on the HHV-6 patient forums. See: www.hhv-6foundation.org and click on patients. Other valcyte experiences can be found there.
Good luck.
Best, Timaca
Good luck.
Best, Timaca
Nielk
Senior Member
- Messages
- 6,970
Best of luck with Valcyte. Let us know how you are doing!
Timaca
Senior Member
- Messages
- 792
I've had two brain MRIs and both were normal. My brain spect (done at Columbia University Medical Center) showed "moderate global hypoperfusion." I had significant brain fog at the time of the brain spect. I have much less brain fog than I used to. I'm not totally well yet though. Certainly viruses (and I think bacterial pathogens) can cause brain problems (encephalitis) that can lead to permanent brain problems. My hope is to escape permanent problems from my illness. Hopefully that will happen for all of us.....that we will get well without permanent damage.
I hope the valcyte helps you. I've seen people get well on it. Think good thoughts!
Best, Timaca
I hope the valcyte helps you. I've seen people get well on it. Think good thoughts!
Best, Timaca
HI
today is day three. Not sure if anyone cares lol. Just some tachycardia and shakiness it passes in a few hours. The half life is short on this drug so side effects lessen quickly as it is in and out of the system. Some nausea and stomach uncomfortably but hard to say thats the valcyte as that is the regular with me
today is day three. Not sure if anyone cares lol. Just some tachycardia and shakiness it passes in a few hours. The half life is short on this drug so side effects lessen quickly as it is in and out of the system. Some nausea and stomach uncomfortably but hard to say thats the valcyte as that is the regular with me
soxfan
Senior Member
- Messages
- 995
- Location
- North Carolina
I am just wondering why your doctor put you on Valcyte..did you have high titers or active infection? I just had my HHV6 test come back high and am still waiting to hear from the doctor. I don't know if it is high enough that he would consider trying it on me.
I have had totally normal MRI's also....
I have had totally normal MRI's also....
hi
yes my titers were sky high like scary high 1200!! but when i spoke to the hhv 6 foundation they said this was not the highest manhy patients have in the millions! i also have elevated ebv and i have mycoplasma infection. this was the first priority to get under control (hhv6) when i am done with the valcyte or at least acclimated to it i will begin antibiotic treatment to wipe out mycoplasma. i am glad i started the valcyte. the quicker i can knock these levels down the sooner i can feel a bit better. how high were your levels? again i know each labs values and reference ranges are diff.
yes my titers were sky high like scary high 1200!! but when i spoke to the hhv 6 foundation they said this was not the highest manhy patients have in the millions! i also have elevated ebv and i have mycoplasma infection. this was the first priority to get under control (hhv6) when i am done with the valcyte or at least acclimated to it i will begin antibiotic treatment to wipe out mycoplasma. i am glad i started the valcyte. the quicker i can knock these levels down the sooner i can feel a bit better. how high were your levels? again i know each labs values and reference ranges are diff.
SOC
Senior Member
- Messages
- 7,849
Just a warning -- you are not likely to see significant results in days or even a few weeks, especially if you continue taking only 450mg daily. Noticeable effect at 6 weeks is generally considered good. Treatment could easily take 18 months or more to make a big impact on HHV-6.
Your situation could be different, of course.
I suggest you read the reports at the HHV-6 Foundation that Timaca suggested as well as the Valcyte threads here in the Antivirals, etc forum. They'll give you an idea of what to expect from Valcyte.
Your situation could be different, of course.
I suggest you read the reports at the HHV-6 Foundation that Timaca suggested as well as the Valcyte threads here in the Antivirals, etc forum. They'll give you an idea of what to expect from Valcyte.
- Messages
- 19
- Location
- SW Idaho
I have been taking Valcyte(generic) for 16 months
Hi,
Valganciclovir saved my husband's life, and mine. The first 21 days were the roughest-although not as rough as the dying process! The first thing I noticed was my brain worked fairly well much more often. His brain-very well! Scary well. Then skin color, then the ability to use something other than a wheelchair. Finally, to rise without human assistance to go use the bathroom, then shower.
Anything is everything when you are that close to dying. It was an awful scary time; my husband would have been dead within two weeks but for this medicine. It works for our subtype!
We had the fortune of being able to talk with Dr. Montoya by telephone in approx. January 2009 just after he was able to unblind his study. By December of 2009, there was no other option, especially for my husband. I started stuffing Valganciclovir down him. With the first dose, I saw improvement and knew I would not lose him!
My worst issue was gut cramping-but then; the intestinal system is where most of the receptors for medicines are. Like every thing else! Baclofen works on the parasympathetic system and it helped a lot.
Given Dr. Montoya's theory that high titers of EBV, HHV-6, = you likely have CMV also, etc. This Gang of Three triad helps provides a back door that opens the immune system to numerous opportunistic viruses, and leads to total co-opting of the helper/macrophage cells. Valganciclovir seems correct that by suppressing these baddies which allows the immune system to begin some restoration.
I do not recall correctly, but Dr. Mikovitz's (et al) paper touched upon this in the discussion of developing the micro-array chip, which helps them discover that many ME/CFIDS sufferers have 30-50 viruses on board. (Alternatively, did Dr. Montoya's initial paper-or both? Sorry-brain fog still comes more than it goes!).
At any rate, things were very very dangerous in December 2009, and the Valganciclovir worked. It is is subtle over time, after an initial gain during the 21 day loading process. The since then have been like hints? which coalesce into definite things you can see, even test.
We both can now run fevers and blow off flu (the flu bugs not covered by the vaccine but prevalent as parents know all too well, running through the school systems, workplace, etc.) and pneumonia, for an example, now.
We are alive, we can wash ourselves, cook a bit, shop a bit, do some word processing, cruise the net, we can drive sometimes, sit straight for more than 30 seconds, etc. and there is more progress to be made. We hope to be seeing Dr. Montoya within the next three months.
(My husband and I picked up our infectious subtypes at different times and geographic locations-and we met in 1999. All came together to crash due to a number of physical and other stressors in 2003-2004. My physical crash accelerated from caring for him and trying to keep some doctors from killing him-sad thing these days, what medicine has allowed itself to become.).
Therefore, my unasked for 2 cents-I say congratulations! Stick with the protocol as long as you can. There will be rough days, weeks, even possible many weeks-when there are larger immune system battles going on. You may find low pressure weather systems seem to bring on rougher viral battles. I did not read all the posts thoroughly to see how disabled you presently are (I apologize!), but I really hope you see some progress! I also take acyclovir to help boost the Valganciclovir, since while it has some effect with Shingles, it doesn't fill that herpes receptor enough to stop my nonstop breakouts by itself.
We hope to try the anti-retrovirals eventually. So far, we but into the XMRV theory that XMRV starts with a couple different parts of the immune system to screw up than HIV, HTLV-3 and HTLV-4, and that ME/CFIDS will likely become, for us anyway, a disease susceptible to management. Eventually, we may be able to return from the land of the invisible to working. If that happens, I will be working with medical societies and legislatures and anything I can to advance help for our disease. It is wrong in America that we are left to die unseen, stigmatized-you all know what I am talking about.
We are surviving because of medicine and help from family and friends. Thank you dear God. Fortunately, we have some pain management medicines, as well as other needed medicines, from doctors with better clues-ah, er, expertise. Originally, as many of us know all too well, not enough pain meds, but we have noticed the pain "floor" coming closer to the ceiling-so it is almost enough to help us function significantly better.
Lois
Hi,
Valganciclovir saved my husband's life, and mine. The first 21 days were the roughest-although not as rough as the dying process! The first thing I noticed was my brain worked fairly well much more often. His brain-very well! Scary well. Then skin color, then the ability to use something other than a wheelchair. Finally, to rise without human assistance to go use the bathroom, then shower.
Anything is everything when you are that close to dying. It was an awful scary time; my husband would have been dead within two weeks but for this medicine. It works for our subtype!
We had the fortune of being able to talk with Dr. Montoya by telephone in approx. January 2009 just after he was able to unblind his study. By December of 2009, there was no other option, especially for my husband. I started stuffing Valganciclovir down him. With the first dose, I saw improvement and knew I would not lose him!
My worst issue was gut cramping-but then; the intestinal system is where most of the receptors for medicines are. Like every thing else! Baclofen works on the parasympathetic system and it helped a lot.
Given Dr. Montoya's theory that high titers of EBV, HHV-6, = you likely have CMV also, etc. This Gang of Three triad helps provides a back door that opens the immune system to numerous opportunistic viruses, and leads to total co-opting of the helper/macrophage cells. Valganciclovir seems correct that by suppressing these baddies which allows the immune system to begin some restoration.
I do not recall correctly, but Dr. Mikovitz's (et al) paper touched upon this in the discussion of developing the micro-array chip, which helps them discover that many ME/CFIDS sufferers have 30-50 viruses on board. (Alternatively, did Dr. Montoya's initial paper-or both? Sorry-brain fog still comes more than it goes!).
At any rate, things were very very dangerous in December 2009, and the Valganciclovir worked. It is is subtle over time, after an initial gain during the 21 day loading process. The since then have been like hints? which coalesce into definite things you can see, even test.
We both can now run fevers and blow off flu (the flu bugs not covered by the vaccine but prevalent as parents know all too well, running through the school systems, workplace, etc.) and pneumonia, for an example, now.
We are alive, we can wash ourselves, cook a bit, shop a bit, do some word processing, cruise the net, we can drive sometimes, sit straight for more than 30 seconds, etc. and there is more progress to be made. We hope to be seeing Dr. Montoya within the next three months.
(My husband and I picked up our infectious subtypes at different times and geographic locations-and we met in 1999. All came together to crash due to a number of physical and other stressors in 2003-2004. My physical crash accelerated from caring for him and trying to keep some doctors from killing him-sad thing these days, what medicine has allowed itself to become.).
Therefore, my unasked for 2 cents-I say congratulations! Stick with the protocol as long as you can. There will be rough days, weeks, even possible many weeks-when there are larger immune system battles going on. You may find low pressure weather systems seem to bring on rougher viral battles. I did not read all the posts thoroughly to see how disabled you presently are (I apologize!), but I really hope you see some progress! I also take acyclovir to help boost the Valganciclovir, since while it has some effect with Shingles, it doesn't fill that herpes receptor enough to stop my nonstop breakouts by itself.
We hope to try the anti-retrovirals eventually. So far, we but into the XMRV theory that XMRV starts with a couple different parts of the immune system to screw up than HIV, HTLV-3 and HTLV-4, and that ME/CFIDS will likely become, for us anyway, a disease susceptible to management. Eventually, we may be able to return from the land of the invisible to working. If that happens, I will be working with medical societies and legislatures and anything I can to advance help for our disease. It is wrong in America that we are left to die unseen, stigmatized-you all know what I am talking about.
We are surviving because of medicine and help from family and friends. Thank you dear God. Fortunately, we have some pain management medicines, as well as other needed medicines, from doctors with better clues-ah, er, expertise. Originally, as many of us know all too well, not enough pain meds, but we have noticed the pain "floor" coming closer to the ceiling-so it is almost enough to help us function significantly better.
Lois
- Messages
- 19
- Location
- SW Idaho
Yes, what sickofcfs said.
Lois
Lois
I think its hard to say how we may react or what to expect being that each of us are so very different. I appreciate all the feedback, I really do. I have read many reports and yes I know symptoms can get worse before better but for some they get better and stay better. Sickofcfs just wondering why staying on a low dose may be ineffective? I think that a stronger dose would kill me. I heard Dr. Montoya is dosing much lower these days and getting results. I think it depends on how the body metabolizes medications and such as well. Only the titers for HHV 6 will be the true tell tale sign that this is working. I also think duration of treatment varies as I have heard some people taking it for 2 weeks with good success and some taking it for 2 years.
I appreciate the feedback and I am so happy to hear the valcyte saved you and your husband. May I ask what you meant when he was close to death? From the HHV 6? Thank god you are both well and enjoying life like you deserve once again. Makes me feel hopeful.
I appreciate the feedback and I am so happy to hear the valcyte saved you and your husband. May I ask what you meant when he was close to death? From the HHV 6? Thank god you are both well and enjoying life like you deserve once again. Makes me feel hopeful.
Grape Funk
Senior Member
- Messages
- 113
- Location
- USA
ABC, are you taking 450 mg a day and building up/whats your plan on dosage?
yes. starting with this and to be honest i felt like hell today. i will have bloods checked first before i go up. However, i def feel that this dose is having an effect on me i had a fever and was very sick today from it. tonight is a little better. dosage is very individual. I had a test done at the Mayo Clinic which was a genetic test and showed exactly how my body breaks down medication. It is very interesting but shows how I only needed certain doses of certain medications whereas others may need much more. Its all about how your body metabolizes a drug. The 450 for now and this is only day three is hitting hard and strong on my system, so for now one day at a time.
Nielk
Senior Member
- Messages
- 6,970
Hope you feel better tomorrow. If it helps, my doctor (Dr. Derek Enlander)says that If you initially feel sick with this protocol, it's a good sign because it means it is fighting your viral load.
Nielk
Senior Member
- Messages
- 6,970
That is funny!
I have the prescription at home but am waiting to start it.
I have had Bronchitis and now ear infections.
It seems like I've been waiting forever for "the right time" to start it.
Good Luck!
Nielk
Nielk
Senior Member
- Messages
- 6,970
I used to see him more often but the commute has been difficult for me. I try to go every three months when he takes new blood work and based on the results he adjusts the treatment,
I hope you are feeling better on the Valcyte.