Do you have an active EBV infection? (POLL)

[Hip]

Have you ever tried LDN?

LDN seems to worsen my anhedonia slightly, and I've never noticed any benefits from it.

Did you try starting out w/ extremely low does of valcyte?

I started with an eighth of a 450 mg tablet of Valcyte, and built up to a full tablet daily over the course of a week.

Physically I had no side effects and tolerated it well, but the mental health side effects kicked in after about a week.

 

[Wishful]

The main mental health symptoms I get hit with when taking certain drugs are: depression

Have you looked for a correlation with tryptophan metabolism or niacin, which are also part of the brain's immune response? Your reaction to the drugs might be less on a low-TRP or low-niacin diet. Niacin certainly gave me strong suicidal moods.

 

[Hip]

Have you looked for a correlation with tryptophan metabolism or niacin,

I did look into a bit, after a suggestion I read in this post, which suggested taking 5-HTP might help overcome the drug-induced depression. I found 5-HTP helps a little bit, but nothing spectacular.

I've never got any adverse effects from niacin or niacinamide.

 

[sometexan84]

 

[sometexan84]

EBV, Vatrex, and Valcyte Facts from Dr. Lerner's Papers

• Improvement begins at 6 months at the earliest
• Dr. Lerners patients avg 2.4 yrs on meds
• 79 of the 106 (74.5%) Dr Lerner patients improved dramatically
• 42.5% of 106 Dr Lerner patients had single infection of EBV, CMV, or HHV-6
• 57.5% of 106 Dr Lerner patients had multiple infections
• Food increases valacyclovir bioavailability, works best given after meals
• Dr Lerner - EBV is causally involved in 81% of cases of CFS

 

[Wishful]

Did the paper mention any cures or 100% successful treatments? To me, "improved dramatically" means "this treats one contributing factor, but doesn't treat ME". Not that dramatic improvements should be ignored, since we don't have a treatment for ME yet, but I'd put it lower on the list for areas that ME research funding should go to.

 

[sometexan84]

Did the paper mention any cures or 100% successful treatments?

I think it was avg 4 to 6.5 on Energy Index

 

[Wishful]

I think it was avg 4 to 6.5 on Energy Index

So is that no to any patients returning to 100% health?

 

[sometexan84]

So is that no to any patients returning to 100% health?

You are so wishful, Wishful.

You are like me. I have NO interest at all in getting to 90%, 95%. It's 100% recovery all the way!

I gave some Valtrex/Valcyte stories for Hip to add to the Recovery Stories thread not long ago. He hasn't posted them yet. But there are def some who got to 100%.

Remember, Dr Lerner was treating people YEARS ago. So, back in the day, less people even knew about CFS, or what it was, patients and doctors. So you could imagine one might have had pretty severe symptoms, enough to force them to seek out what the heck was going on, and find one of the few CFS physicians in existence at the time that could treat it.

Dr Lerner likely dealt w/ tons of mostly very severe cases. Obviously, this is just theoretical, but it makes sense, or at least in my mind it makes sense.

I really don't know how common it is for "Severe" CFS patients to get back to 100%. I've always been "Mild". I'm guessing you are "mild" as well.

Should be exponentially easier to go from mild to 100% compared to severe patients. That said, I think the odds of a mild CFS case getting to 100% from a single treatment is extremely unlikely.

 

[Wishful]

You are so wishful, Wishful.

I wasn't asking about how likely 100% would be from Lerner's treatments or any other. I was asking whether the treatment was affecting the core dysfunction (removes all ME symptoms) or just treating some comorbid or secondary disorders. If someone had a treatment that only worked on a few percent of patients, but achieved 100% success on them, I'd see it as affecting the core dysfunction, and something that research should focus on. One that affected 80% of patients but only achieved partial reduction of some symptoms would indicate that it's affecting some common factor or dysfunction, but not the core.

 

[sometexan84]

I was asking whether the treatment was affecting the core dysfunction

I don't know man. I guess if the only thing driving your CFS symptoms was from EBV only, resulting in things like mito dysfunction, autonomic dysfunction, or thyroiditis, or sleep apnea from tonsil/adenoid inflammation, etc... then Valtrex treatment for the EBV could potentially make you 100%. Assuming you adhered to the lengthy Valtrex treatment protocol for EBV.

For me, Valtrex is only part of my CFS treatment. But in my case, I have to treat the active enteroviruses I have as well, since they totally alter your immune system as well, just like EBV.

THEN, since EBV and enteroviruses messed w/ my immune system (and other things), I have to treat all the conditions and infections that occurred because of this.

I didn't really do treatment in that order necessarily. But yea, in my case, there is no core dysfunction. Cause, it's not like there's a single medicine I could take that would get rid of all my infections, heal intestinal permeability, heal my gut microbiome, relieve all inflammation, neutralize oxidative stress, balance my immune system, and completely restore my body to exactly how it was before.

Although, that would be cool.

 

[Wishful]

Cause, it's not like there's a single medicine I could take that would get rid of all my infections, heal intestinal permeability, heal my gut microbiome, relieve all inflammation, neutralize oxidative stress, balance my immune system, and completely restore my body to exactly how it was before.

The temporary remissions I experienced seemed to be 100%: all ME symptoms completely gone. All gone abruptly at the same time. Then they all returned abruptly. That's why I believe there's a core dysfunction that causes a lot of different downstream symptoms that very with the individual, and possibly a lot of upstream factors that affect the severity of those symptoms.

While fixing that core dysfunction wouldn't eliminate all infections, heal your gut, etc, those problems might not be noticeable without their effects via the core ME dysfunction.

 

[sometexan84]

The temporary remissions I experienced seemed to be 100%

Yea, it's tough. I can see multiple scenarios occurring where that could happen to me w/ my condition, with getting to 100%, only to relapse later. Again, this is just me I'm talking about, not everyone. But I could see a scenario where I spend a yr taking Valtrex and my EBV infection is 95% gone, and I feel great again. And then later on, my still-active enterovirus infection allows for another EBV Re-Activation, resulting in an inevitable relapse.

After all, I'm very confident at this point to say that I had an acute enterovirus infection that started the whole chain of events leading me to where I am now. The extreme stress I was under at the time, combined w/ the intense exercise and corticosteroid shots allowed for development of chronic enterovirus infection. This re-activated EBV.

Anyway, I can see other scenarios as well that would result in my condition being temporarily cured 100%, and then a relapse.

While fixing that core dysfunction wouldn't eliminate all infections, heal your gut, etc, those problems might not be noticeable without their effects via the core ME dysfunction.

Regardless, I still don't want bacterial and viral infections in my body, even if they are asymptomatic.

@Wishful Hip updated the Recovery Stories - https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/

 

[Wishful]

Regardless, I still don't want bacterial and viral infections in my body, even if they are asymptomatic.

That might be the normal, healthy state for most people. Maybe 95% of the population has some viruses in a latent state hidden in their bodies, and some bacterial infections being fought in hair follicles, and gums, and wherever they might occur. It's possible that without constant low-level fights, our immune systems would go wild. I'm not posing that as a theory, just as a possibility. I wouldn't be surprised if exhaustive testing, with all the latest techniques, of an Olympic athlete in prime health, revealed multiple minor infections, tumours, and other problems that didn't produce noticeable symptoms.