Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

[Pyrrhus]

I took it for its effect on HHV-6 specifically.

Good point. Valcyte does have some activity against HHV6, but it's not as strong as it is against HSV, VZV, CMV, or EBV. And since there's little else to treat HHV6, it is often used for HHV6.

This is not true. See Dr. Prusty's papers.

Dr. Prusty's papers refer to a more subtle type of reactivation, which is distinct from pure latency. I think what you're getting at is that this more subtle type of reactivation will not lead to changes in antibody titers in the same way as a full-scale reactivation would.

 

[Learner1]

@vision blue If I were in your shoes, I'd do a full set of EBV titers AND a PCR and see what you find. The stakes are too high I've not Knowing that you have EBV causing problems, and too many people have been put off by inadequate tests. In my situation, only VCA IGG and the PCR indicated I had it, and this was after two different infectious disease doctors blew me off.

It's also worth knowing if you have other herpes family viruses, at this could change which antiviral would be prescribed and how effective it would be.

Going on Valcyte was a game changer for me. There is the brand name these days as well as two generics. You might look at the ingredients of each and see if you might tolerate one better than the others. And, it might be worse to take mast cell stabilizers or mast cell meds in any case, especially quercetin, cromolyn sodium, etc.

Best wishes....

 

[Learner1]

Dr. Prusty's papers refer to a more subtle type of reactivation, which is distinct from pure latency. I think what you're getting at is that this more subtle type of reactivation will not lead to changes in antibody titers in the same way as a full-scale reactivation would.

It's not just the titers. This more subtle type of reactivation can be extremely damaging and cause many of the issues that PwME experience. Especially leading to fatigue, due to the fragmentation of mitochondria. If these quietly smoldering viruses finally are treated, they'll stop damaging the mitochondria, and repairing the damage can lead to greatly improved symptoms.

 

[Learner1]

Why bother since it doesn't change the treatment. High IgG for EBV already shows there was an exposure.

Because many of us only have high VCA IgG, without high EBNA or EA. Too many cases have been missed and left untreated because of this.

 

[jstefl]

@vision blue

It has been a long time since I tried the Valtrex and I only used it for a short time, so my memory isn't real precise, but I seem to remember the usual problems, headache and an even more tired feeling.

I read the warnings before I started Valcyte and was very afraid when I started, but I was able to tolerate it from the first dose with no problems whatsoever. I was tested the entire time and there were no problems that came up during the 10 months that I took it. I want to say that my good fortune may not apply to others. This was back in 2008 and I was active on the HHV-6 site at the time. There were many that couldn't tolerate Valcyte. This was at the time that Dr. Montoya was optimistic about the drug "curing" ME/CFS. I had made improvements, but was in no way cured.

If you are able to tolerate Valcyte it may be worth a try, but the results may vary.

 

[hunter1899]

Lots of very helpful info here. So it seems like based on my results that Valcyte would be the way to go? What dosage should I try?

 

[hunter1899]

@hunter1899 Your HHV-6 (IFA) IgG titer is above 1:160 which according to the HHV-6 Foundation is above the median for healthy controls, which could indicate that an active HHV-6 infection is present.





Your CMV IgG antibody titer is 13 times the negative reference titer. According to Dr. Lerner; "A diagnosis of cytomegalovirus(CMV) infection is made with an elevated CMV IgG titer. The IgM titer for CMV is inaccurate and insensitive. The higher the CMV IgG titer, the greater the viral load."

Unfortunately, Dr. Lerner didn't specify what exact titer is considered elevated.



I don't understand, your lab says Epstein-Barr EA IgG is 6.4 U/ML. What test showed >750?

It was a previous test that showed my VCA IGG was >750

 

[xrayspex]

I use NT Factor, formulated by Garth Nicolson and licensed to Allergy Research, Nutricology, and Researched Nutritionals. Generally, the tub of powder by Nutricology is cheapest, without any additional ingredients causing allergy issues.

I also have had iVs of phosphatidylcholine, though this only provided one of the needed lipids, the largest constituent of the membranes.
y.

I think I am going to try NT Factor, cannot remember if I have --thinking maybe skipped it because of not feeling well when I took phosphatidyl choline in other forms in past. Do you have any idea why someone would feel bad on choline? I just found out my cholesterol went high for first time in recent blood test and am really surprised and am thinking should try again to get a tolerance for something like NT factor if possible.

 

[Learner1]

It is a potential side effect. Here's some info on choline:

https://www.healthline.com/nutrition/what-is-choline#toxicity

https://ods.od.nih.gov/factsheets/Choline-Consumer/

 

[gbells]

It is a potential side effect. Here's some info on choline:

https://www.healthline.com/nutrition/what-is-choline#toxicity

https://ods.od.nih.gov/factsheets/Choline-Consumer/

Choline is an essential nutrient. It is contained in cruciferous vegetables (broccoli) and is needed for energy. I get strong appetites for them and eat them regularly (4 days/week)

 

[Martin aka paused||M.E.]

Choline is an essential nutrient. It is contained in cruciferous vegetables (broccoli) and is needed for energy. I get strong appetites for them and eat them regularly (4 days/week)

@Learner1 I know this is an old thread but I have a question.
I got HHV6b positive in whole blood and saliva, both 400 copies. Serum was negative. HHV6 Foundation says that blood levels are not important bc of the contamination of the population. Unfortunately the lab I had to use for serum level only said negative, but did not mention a certain number of copies. Do you think I should pursue this further or would that be a waste of time and energy? My vCA-IgG is only 102. Western Blot negative. IgM positive 25 (ref. <0.12). Lab says former infection. I'm not so sure.
Thank you in advance!

 

[Cipher]

I got HHV6b positive in whole blood and saliva, both 400 copies. Serum was negative. HHV6 Foundation says that blood levels are not important bc of the contamination of the population.

The HHV-6 foundation thinks that high levels of HHV-6 in whole blood (>200 copies/ml) is proof of an active infection:

Quantitative PCR DNA test on whole blood

Can it differentiate active from latent infection?
Yes. If the viral load is >200 copies per ml or 20 copies per microgram of DNA then this is an active infection.

Comments
Healthy persons will have very low viral loads, typically less than 20 copies/ml in the whole blood. Usually this level is not detectable in a commercial lab.

source

 

[Learner1]

@Learner1 I know this is an old thread but I have a question.
I got HHV6b positive in whole blood and saliva, both 400 copies. Serum was negative. HHV6 Foundation says that blood levels are not important bc of the contamination of the population. Unfortunately the lab I had to use for serum level only said negative, but did not mention a certain number of copies. Do you think I should pursue this further or would that be a waste of time and energy? My vCA-IgG is only 102. Western Blot negative. IgM positive 25 (ref. <0.12). Lab says former infection. I'm not so sure.
Thank you in advance!

Yes!

 

[Martin aka paused||M.E.]

The HHV-6 foundation thinks that high levels of HHV-6 in whole blood (>200 copies/ml) is proof of an active infection:

I looked it up again … They say <400 copies IU/ml… so I don’t know how much… great

 

[Cipher]

I looked it up again … They say <400 copies IU/ml… so I don’t know how much… great

Where do they say that?

 

[Martin aka paused||M.E.]

Where do they say that?

In my lab results… and I can’t find a lab in Germany which offers quantitative PCR (only hospitals)

 

[Cipher]

In my lab results… and I can’t find a lab in Germany which offers quantitative PCR (only hospitals)

Aha OK so when you said "I got HHV6b positive in whole blood and saliva, both 400 copies.", you mean that your lab said it was positive, but below 400 copies/ml?

 

[Cipher]

I can’t find a lab in Germany which offers quantitative PCR (only hospitals)

Labor Enders seems to offer quantitative EBV PCR for whole blood (it goes under the name "EBV-DNA")

 

[Martin aka paused||M.E.]

Aha OK so when you said "I got HHV6b positive in whole blood and saliva, both 400 copies.", you mean that your lab said it was positive, but below 400 copies/ml?

Yes I made a mistake I thought they said 400 copies but they said “<400 copies”