One month into Valtrex, starting out on Valcyte

[Gingergrrl]

@Matt_C Thank you for the answers to my questions and best wishes for your surgery.

 

[Matt_C]

My housemate commented today that i've been looking good lately - more colour in my skin and I seem brighter and chirpier. I hadn't been paying too much attention but I generally do feel better. I still go for an afternoon nap and my sleep is still broken, but I have a long way to go on the antivirals before these symptoms resolve. This is an encouraging sign of progress. I'm looking forward to resuming the antivirals.

Surgery went well, healing will take another couple of weeks. Doc said the guideline is to resume antivirals one week after surgery so long as there are no complications so i'm probably safe to resume Valtrex now. I'll give it another week though.

I'm moving back to Sydney in a month or so to resume my job for the rest of the year. I took leave from my job and moved from there to Melbourne over 18 months ago and was hoping i'd get well enough to start working in Melbourne. But that was more of a hope than an expectation. I only just discovered Dr Lerner's protocol three months ago but I don't have enough time or money to ride it out until i'm well enough to get work here. I'm looking forward to it, by the time the end of the year rolls around I should be doing really well and will move back down to Melbourne.

 

[Matt_C]

I realised I rushed the valganciclovir too early. I started taking the third 450mg dose 12 hours after the morning 900mg dose before establishing whether my liver could cope with it, but the protocol states this should only be done once it is established I can tolerate the 900mg morning dose. It doesn't give a time frame, as in how many normal four-weekly blood test results a person should wait for before introducing the night time dose. Next time i'm going to give it three months.

 

[Matt_C]

My AST and ALT are back within normal limits. Still a little higher than they were before I started valganciclovir but since there is no abnormality I assume I can go ahead and resume valganciclovir dosing. I'm seeing my doc this Thursday so i'll wait a couple of days before resuming valganciclovir. I've started Valtrex again, one gram a day at the moment but will increase totwo in four divided doses tomorrow.

 

[Matt_C]

I started valganciclovir again, just one 450mg pill in the morning. I'll increase it to 900mg in the morning in the next couple of days. I'm taking two grams of Valtrex divided into four doses per day. I'm waiting until I resume work before I increase Valtrex to four grams per day, due to the cost. I'll be going back in a few weeks time.

Also of note is that I use amitripyline as needed for sleep. I'm still experimenting with the dose as 10mg tends to leave me wiped out for a day or two afterwards. I took 5mg last night and I feel less wiped out today. It's the most effective med for sleep i've ever taken by far. I don't take it every day. Last year some time my doc prescribed it for me on a daily basis and I found the effect on my sleep wore off after a while, so I discontinued it. I then started using it as needed and it always works wonders, gives me 8-10 hours of deep sleep each time. Next time I use it i'll take 2.5mg and see how it goes.

 

[Matt_C]

Today is my six month anniversary since I started posting here, and starting on antivirals so I thought it's time for an update. I'm back onto 900mg of valganciclovir and have been for maybe a month or so. I haven't had any blood tests in a little while, i'll be sorting that out this week. I'm still have a way to go before I would consider myself improved, and I haven't noticed any major shift in my symptoms since early on when I first started the antivirals. I think i'm gradually progressing. I'm back in Sydney and back at work, started last week which feels good. Now I can afford this therapy! I'm off sick at the moment though as I picked up a cold on the weekend, and last week I had to take a sick day due to ME/CFS symptoms, and I struggled somewhat on my days off but I had a couple of good days too. I saw some friends on the weekend who said i'm looking well, and a few people at work have commented on how well i'm looking these days, particularly noticing more colour in my skin. I used to be pallid and sometimes a little grey, I guess those days are behind me.

I think I should try and take things as easy as possible, mainly to avoid picking up extra bugs and so forth, although it's hard living in a city like Sydney and having money again. There's so much on and I need to get out and meet new people as I don't have a lot of friends here any more. I have a few, which I guess is enough. My main goal is to recover from this illness so I should try and keep that in the forefront of my mind.

 

[Matt_C]

Time for an update. Things have been going well. I'm maintaining work and a social life, as well as a fitness regime, something I doubt I could have done prior to antivirals. But most importantly, I've experienced a significant improvement in my symptoms over the last few days. Two things happened - i had all of my amalgam fillings removed after a friend suggested it, and I saw a myofascial/remedial massage therapist for work on my tension headache and tmj symptoms. It's hard to tell if removing the a malgams helped so soon after removing them, its possible and there's some discussion about it on these boards, but treating my tmj has helped significantly. I feel great, very close to normal and well. Tension in my facial muscles has long been a problem, making my head feel heavy and me very tired. My sleep seems to have improved as well. Let's see if it continues.

I'm also going to start dosing olmesartan again along with the antivirals and work on reducing my 25d levels to help the olmesartan work optimally, as per the Marshall Protocol. I feel like I'm approaching the finish line.

 

[heapsreal]

@Matt_C
How do you dose olmesartan ?

 

[Matt_C]

40mg every six hours

 

[Biarritz13]

@Matt_C

Hi Matt! Are you still doing good on Valcyte?

Can we have an update?

 

[Tammy]

Hope you are doing well..............I just finished 1 year on herbal anti-virals and many things have improved.............I didn't think it was possible. I really feel like anti-virals are the way to go.

 

[Matt_C]

@Matt_C

Hi Matt! Are you still doing good on Valcyte?

Can we have an update?

Hi all. Been a while. I stopped taking antivirals perhaps a year ago. I felt like I had come as far as it would take me and I was concerned about some of the impacts on my liver function, as well as the costs. I was also flying blind much of the time, it was an experiment for me. The early improvement I saw didn't maintain and continue, so I eventually stopped. A few months later I started methylation and feel this is the answer for me. I've seen a lot of progress and it continues today. Please see my posts in the methylation/b12 sections, although i'm not very active there these days as there isn't a great deal of support. But there is enough info to figure out your way through it. Cheers and all the best.

 

[CFS_Kristin]

This is my first post and i'll be keeping a record of my progress on antivirals here.

I'll start by giving a little history. I first began noticing something wasn't right when I was about 19 years old. It started out as insomnia and some other subtle neurological problems but for the most part, nothing was really wrong. I just had trouble getting to sleep. Around age 23 I became stricken with a severe bout of some kind of gastro illness where I was bloating severely and started having trouble digesting food. Things settled down but from then on I had some sensitivities to different foods, as well as subtle bloating etc. My insomnia became chronic and I began waking early as well as having trouble getting to sleep by around age 25. I would get around five hours of broken sleep a night.

At its worst, closer to age 30, I was getting 3-5 hours of broken sleep. By age 30 my overall health was very poor and I was developing full blow chronic fatigue syndrome, or what appears now to be a post-viral fatigue syndrome. I had constant low level cold/flu symptoms, chronic gastrointestinal problems, swollen and painful lymph nodes, muscle and joint pain and fatigue, weight loss, cognitive dysfunction and worsening brain fog. I developed full-blown chronic fatigue syndrome around age 31 and I was unable to get out of bed. I had to withdraw from university and stop working. I was very, very sick. Unfortunately, I couldn't find a doctor who was willing to think very much and most simply shrugged their shoulders after running standard blood tests that appeared normal. Using Dr Lerner's EIPS scale retrospectively (Energy Index Point Score - http://www.investinme.org/Documents/PDFdocuments/EIPS.pdf), I was functioning at about a 1-2.

Around age 31, six years ago, I began a treatment protocol called the Marshall Protocol. I saw some improvements in a number of areas early on. My gastrointestinal symptoms eased significantly and I developed an appetite again for the first time in a long while and which gave me enough evidence to continue. Over the following six years I experienced significant improvement in my health, however was still dealing with chronic tiredness, chronic sleep problems, and cognitive dysfunction. I estimate that I had achieved about a 5 on the EIPS scale as I was able to work a 35 hour week job consisting of 10 hour shifts four days per week, but with difficulty. I still barely had a social life as I was tired and just wanted to rest outside of work. I decided to take leave on medical grounds from my job around May 2013 in order to focus on my recovery and try and rebuild a social life because I couldn't do both.

I decided to see a doctor in Melbourne in September this year who prescribes this protocol and who has a broader approach to chronic illness. He suggested I try Valtrex at around 500mg a day, then move up to 1500mg daily. I started and noticed an increase in symptoms - more fatigue, some headaches, etc. I recognised this as herx. I did some research and came across this and other forums including Dr Lerner's protocol and made another appointment with my doctor. He was excited to read of Dr Lerner's work and immediately increased my dose of Valtrex to 4000mg a day as per the protocol, and over the last month I have seen perhaps the biggest and most significant shift in my symptoms since I became sick. I have energy for most of the day, I feel lucid and alert, and I generally feel good. I have gone from a 5 on the EIPS to a 7. My sleep is still broken but other than that and some mild lingering cognitive problems, I feel quite well. So it seems this is what I needed to do all along. It's still early days but my improvements have held up consistently since starting Valtrex. I'm 37 years old now, and for the first time since age 18, I am starting to feel normal and well. I hope this continues!

Years ago I was told I had positive IgG titers for EBV. I haven't had this tested recently but will do so. I also had blood tests for HCMV which were negative, and HHV6 which I showed a positive IgG level, so an indication that i've had this in the past. They didn't report the titer levels but I plan to have all the recommended blood tests done and will ensure I get the titer levels. However, based on the positive results and my symptoms, I believe this virus to be part of the problem and i'm going to go ahead and order some valganciclovir. I will start as soon as it gets here, obviously under the close supervision of my doc (he already wrote me a prescription).

Looking back, I can very clearly recall when I picked up these viruses. They are the ones that cause glandular fever, and I was about 19 years old - right before I developed the insomnia that has plagued me for the last 18 years. I was sick with some kind of viral illness and it dragged on for perhaps six months.

Perhaps my combination of the Marshall Protocol with the antiviral protocol will make things different for me? The Marshall Protocol works by restoring immune system function, so I have reason to be hopeful. I experienced significant symptom remission before starting the antivirals, so i'm not in the same situation as most other people. It will be interesting to see how things unfold in any case.

I will keep posting my progress on this thread.

Hi, Are you still taking Valtrex? I started 1,000 MG 2 months ago, and when I try to stop taking it I get extremely terrible flu symptoms. I'm not sure if this is a sign that it's working or that it's giving me withdrawal symptoms.

 

[Matt_C]

Hi, Are you still taking Valtrex? I started 1,000 MG 2 months ago, and when I try to stop taking it I get extremely terrible flu symptoms. I'm not sure if this is a sign that it's working or that it's giving me withdrawal symptoms.

Hi, no I stopped the antiviral protocol some time ago now. I'm not sure what to make of your symptoms i'm afraid as I didn't have anything similar happen to me. Consider posting your experience with more detail in another thread and see what others say. What were your symptoms when you started? How did the antivirals change your symptoms? How many times have you tried to stop and had the flu symptoms come up? I can't imagine withdrawal symptoms are an explanation. Antivirals work by stopping viral particles from replicating, so as an educated guess I would say that when you stop, the viral particles start replicating again and cause you some flu symptoms.

 

[CFS_Kristin]

Hi, no I stopped the antiviral protocol some time ago now. I'm not sure what to make of your symptoms i'm afraid as I didn't have anything similar happen to me. Consider posting your experience with more detail in another thread and see what others say. What were your symptoms when you started? How did the antivirals change your symptoms? How many times have you tried to stop and had the flu symptoms come up? I can't imagine withdrawal symptoms are an explanation. Antivirals work by stopping viral particles from replicating, so as an educated guess I would say that when you stop, the viral particles start replicating again and cause you some flu symptoms.

Just a little background, I've been more or less bedridden the past 1 year with symptoms of extreme fatigue, nausea, migraine, everything you can imagine, so weak I can't get out of bed. I decided to try and follow Dr. Lerner's protocol, since my EBV and HHV-G Titers were high (they are not "active" though). After 18 doctors I decided I would try this on my own. I started in August 2016 (4 months ago) with just 500 MG 2 X a day. After a month, I didn't really tell a difference so I tried to stop it, but when I did I got so incredibly sick. Another month later I tried stopping again, thinking it was a fluke, and again, I got SO sick. Even if I take it an hour late, I feel all my flu symptoms come on immediately. My doctors don't understand, but said for now to keep taking it. I'm just confused and can't tell if it's making me better or worse. And I'm afraid because now I know if I stop, I can't imagine what would happen.

 

[Matt_C]

Just a little background, I've been more or less bedridden the past 1 year with symptoms of extreme fatigue, nausea, migraine, everything you can imagine, so weak I can't get out of bed. I decided to try and follow Dr. Lerner's protocol, since my EBV and HHV-G Titers were high (they are not "active" though). After 18 doctors I decided I would try this on my own. I started in August 2016 (4 months ago) with just 500 MG 2 X a day. After a month, I didn't really tell a difference so I tried to stop it, but when I did I got so incredibly sick. Another month later I tried stopping again, thinking it was a fluke, and again, I got SO sick. Even if I take it an hour late, I feel all my flu symptoms come on immediately. My doctors don't understand, but said for now to keep taking it. I'm just confused and can't tell if it's making me better or worse. And I'm afraid because now I know if I stop, I can't imagine what would happen.

It can be very confusing dealing with symptoms that doctors don't understand. I would suggest contacting Dr Martin Lerner himself and spending some time reading his protocol. He responded to me when I emailed him some time ago.

 

[CFS_Kristin]

It can be very confusing dealing with symptoms that doctors don't understand. I would suggest contacting Dr Martin Lerner himself and spending some time reading his protocol. He responded to me when I emailed him some time ago.

I would contact him but I believe he passed away last October 2015. I didn't know that until recently.

 

[Matt_C]

That is very sad news