How Long to Give Dr. Dantini Protocol?

Have you done the Dantini protocol?

  • Did it help?

    Votes: 0 0.0%
  • Yes

    Votes: 0 0.0%
  • No

    Votes: 3 100.0%

  • Total voters
    3

SusanB

New Member
I've been working with Dr. Dantini for about six months. I love him and his nurse, Jo. They couldn't be more supportive. But I've been taking the Valtrex 3000 mg per day at full dose for nearly five months. I definitely saw improvement. But now, I'm in a big flare up and they insist that I will need to take the meds for probably a year. They say if I get off it now, I'll revert to where I was before. My gut feeling is that it's time to get off the drug, but I'm scared that they are right. My flare up isn't quite as severe as it used to be. Still, I'm feeling concerned about taking this level of anti-viral for this long. I can't find any recent posts by people who have gone through this protocol.

I guess I'm wondering what would be the worst that would happen if I got off it to see how I do?

And I wonder if there is anyone who has gone through it and stayed the course.

Thanks,
Susan
 

Who Me?

Well-Known Member
IMO 6 months is nothing. I've been on Famvir for over two years and I won't stop.

I don't remember the numbers @Remy would
But it takes years to stop all the viruses from replicating. She can tell you lerners protocol for valtrex.

no one can tell you what to do but my question is if you stop what do you do next.

This is a bad ass disease that takes time and patience.

@Strike me lucky has pulsed avs so maybe he can chime in about his experience. But we at all individual and no one dan say what will happen to you if you so stop.
 

Remy

Administrator
I've been working with Dr. Dantini for about six months. I love him and his nurse, Jo. They couldn't be more supportive. But I've been taking the Valtrex 3000 mg per day at full dose for nearly five months. I definitely saw improvement. But now, I'm in a big flare up and they insist that I will need to take the meds for probably a year. They say if I get off it now, I'll revert to where I was before. My gut feeling is that it's time to get off the drug, but I'm scared that they are right. My flare up isn't quite as severe as it used to be. Still, I'm feeling concerned about taking this level of anti-viral for this long. I can't find any recent posts by people who have gone through this protocol.

I guess I'm wondering what would be the worst that would happen if I got off it to see how I do?

And I wonder if there is anyone who has gone through it and stayed the course.

Thanks,
Susan
Hi Susan! Welcome...

I did go through Dr Lerner's protocol for about 12-18 months. Over that time I took Valtrex 4g/day, Valcyte 1800 mg/day, and also did cidofovir IV every two weeks for about 20 infusions.

After all that, I came to the conclusion that the antivirals were really working more as immunomodulators rather than actually reducing my viral load. It's just a theory because it's hard to prove with the antibody testing that's currently used. But it would take on the magnitude of years to eradicate these type of infections with antivirals because they don't kill anything, they just stop replication.

So my two cents (and I'm not a doctor!), is that as long as you do not have an acute infection (high IgM) and you are being diagnosed with a chronic infection on the basis of highly elevated IgG antibody levels, I think it's fine to take a break. If you have an acute infection, I would stick with it.

As far as going back to baseline, well, yes, that might well happen once you remove drugs that are modulating your immune system. But that doesn't mean you couldn't go back on them later if you wanted.

@Who Me? is right that 5 months isn't very long on AVs and that it can take a year or more to see solid improvements. But I also believe in listening to your gut. If it makes you feel any better about staying the course for another few months, the safety profile of drugs like Valtrex is very high. I'm sure your doctor is staying on top of your liver etc just in case though with regular bloods.

Good luck!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
As long as it's not hurting and you can afford it I would take to years end. I have reports from some of Dr. Lerner's patients that it took them a year on antivirals to really see improvement.

The problem, as I understand it, is that the herpesvirus drugs do not get at the pathogen in the cells - they only hit the pathogens when they leave the cells. In our case Lerner believes the pathogens only leave the B-cells when they're about to die and they start creating clones of themselves. It takes time, in other words, for the pathogen ridden B-cells to die out...That's the hypothesis as I remember it.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I know Valcyte can be a tough drug but I also know somebody who's done very, very well on Valcyte - he's been on it for several years without issue yet.

As long as it's not hurting and you can afford it I would take to years end. I have reports from some of Dr. Lerner's patients that it took them a year on antivirals to really see improvement.

The problem, as I understand it, is that the herpesvirus drugs do not get at the pathogen in the cells - they only hit the pathogens when they leave the cells. In our case Lerner believes the pathogens only leave the B-cells when they're about to die and they start creating clones of themselves. It takes time, in other words, for the pathogen ridden B-cells to die out...That's the hypothesis as I remember it.
 

SusanB

New Member
Thank you everyone. This thread has been so helpful! I needed to hear that others stayed on these meds for long periods. I'm taking Valacyclovir (Valtrex).

Notice, though, that on the poll I created with this post, three people answered and all three said Dantini's protocol didn't help. So I'm still confused. Are people better after taking this long-term?

So far, I've actually had no problems with the Valtrex other than being told to drink more water. But I thought that since I was in a flare-up maybe it meant that it wasn't working. Or that this is as good as it gets. I've definitely been going a bit backwards for about a month and a half.

He's not retesting my viruses. And no, my viruses are not active. Just the high antibodies.
Thanks,
Susan
 

Remy

Administrator
Notice, though, that on the poll I created with this post, three people answered and all three said Dantini's protocol didn't help.
I didn't answer because I wasn't entirely sure that the protocol was the same as the one I did with Lerner. Unfortunately, it was not a cure for me either way but I don't regret trying.
 

SusanB

New Member
Thanks, Remy. So did you finally decide to stop because of your thoughts about "After all that, I came to the conclusion that the antivirals were really working more as immunomodulators rather than actually reducing my viral load?"

What convinced you that it was time to stop?

And are you still better than you were before you did it?

Thanks,
Susan
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thank you everyone. This thread has been so helpful! I needed to hear that others stayed on these meds for long periods. I'm taking Valacyclovir (Valtrex).

Notice, though, that on the poll I created with this post, three people answered and all three said Dantini's protocol didn't help. So I'm still confused. Are people better after taking this long-term?

So far, I've actually had no problems with the Valtrex other than being told to drink more water. But I thought that since I was in a flare-up maybe it meant that it wasn't working. Or that this is as good as it gets. I've definitely been going a bit backwards for about a month and a half.

He's not retesting my viruses. And no, my viruses are not active. Just the high antibodies.
Thanks,
Susan
My mistake - I answered the poll question "Have You Done the Dantini Protocol? with a No as in I haven't done it not as in It didn't work for me. Sorry to confuse. I imagine that not many people have done the protocol.
 

TheBabyJ

Member
Thanks for asking this question @SusanB . I'm about six weeks into Dr. Dantini's protocol. Like you said, him and his nurse have been very helpful and kind. He has me on the Valtrex 3x1000mg, but also L-Lysine 3x1000mg. I had a very nice "up" about three weeks in, but it's been rockier since then. It's nice to get some perspective on the potential duration. Does anyone know if the L-Lysine is typical? It wasn't something I saw in his book, or have heard mentioned often. I was also surprised that he didn't conduct any of the delayed food allergy tests that he talked about - although he asked questions that may have given hims indications of allergies. I only shared with him my history of EBV a year ago and a recent IGG of 3.68.

The problem, as I understand it, is that the herpesvirus drugs do not get at the pathogen in the cells - they only hit the pathogens when they leave the cells. In our case Lerner believes the pathogens only leave the B-cells when they're about to die and they start creating clones of themselves. It takes time, in other words, for the pathogen ridden B-cells to die out...That's the hypothesis as I remember it.
@Cort I didn't realize this was the hypothesis behind why it takes so long for the AVs to work. This provides some fantastic context for what may be going on with these drugs. Thanks.
 

Remy

Administrator
Thanks, Remy. So did you finally decide to stop because of your thoughts about "After all that, I came to the conclusion that the antivirals were really working more as immunomodulators rather than actually reducing my viral load?"

What convinced you that it was time to stop?

And are you still better than you were before you did it?

Thanks,
Susan
I started to get some tingles of what might have been neuropathy with Valcyte and it scared me. I was also doing a fairly heavy duty antibiotic protocol at the same time for presumed Lyme disease and I just got to the point where my liver said ENOUGH (despite the fact I never had any signs of liver trouble on labs). So I stopped everything for a while and it didn't seem to make any difference. I wouldn't hesitate to go back on them if I was having signs of an active infection or if I was feeling great on them though. Like I said, other than Valcyte (and even that I think is pretty safe as long as you are vigilant), AVs have a great safety profile.

I did the AV stuff in 2013 and had a great year. 2014 and 2015 were not great at all for me. 2016 is shaping up just fine so far though...so normal ups and downs, I think.
 

Remy

Administrator
The problem, as I understand it, is that the herpesvirus drugs do not get at the pathogen in the cells - they only hit the pathogens when they leave the cells. In our case Lerner believes the pathogens only leave the B-cells when they're about to die and they start creating clones of themselves. It takes time, in other words, for the pathogen ridden B-cells to die out...That's the hypothesis as I remember it.
Lerner's theory, as I understand it from this 2011 paper, is that we have a strange, "nonpermissive" type of herpes viral infection.

We propose that herpesvirus EBV, HCMV, and HHV6 immediate-early gene expression in ME/CFS patients leads to host cell dysregulation and host cell apoptosis without lytic herpesvirus replication. Specific antiviral nucleosides, which alleviate ME/CFS, namely valacyclovir for EBV ME/CFS and valganciclovir for HCMV/ HHV6 ME/CFS, inhibit herpesvirus DNA polymerases and/or thymidine kinase functions, thus inhibiting lytic virus replication. New host cell recruitment thus ceases. In the absence of new herpesvirus, nonpermissive herpesvirus replication stops, and ME/CFS recovery ensues.
Lytic is a part of the cell cycle where the host cell basically breaks open (lyses) and the progeny virions can go on to infect other cells. Supposedly, this is not happening "normally" in MECFS which explains the high IgG titers and lack of other typical infectious markers.

From how I understand this, it's not about the pathogen so much as it is about the way the host cell reacts to the pathogen (non permissive vs permissive).

But honestly, the article is confusing to me in places!
 

Who Me?

Well-Known Member
@SusanB if I read the poll correctly you asked if people saw dantini or not. The 3 votes IMO were that no they had not seen him, not that it didn't work. That's how I read it.

You can't base anyone elses experience with avs on what your outcome will be. I couldn't even take Valtrex so your lucky in that regard.

Notice, though, that on the poll I created with this post, three people answered and all three said Dantini's protocol didn't help. So I'm still confused. Are people better after taking this long-term?
 

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