HHV-6 Still High

[vamah]

Got my latest test results back and, after 2 months on 1800 mg valcyte per day, my hhv-6 titer is the same, 1:320. So, anyone got any ideas? I just lowered my valcyte dose to 1350 per day and I am taking 1000mg inosine and 3000mg lysine (1000 3x a day) also. My titer was originally 1:1280, so it came down quite a bit, but now appears stuck even on high doses of valcyte.

On the plus side, everything in my cbc, liver and kidney function tests were normal. My ALT even came down from 41 to 31 while I was on a higher dose of valcyte. So I'm not too concerned about side effects. But I'm not really feeling better either. So, at a loss.

This week has absolutely sucked. I was hoping for some more promising news.

 

[SOC]

Got my latest test results back and, after 2 months on 1800 mg valcyte per day, my hhv-6 titer is the same, 1:320. So, anyone got any ideas? I just lowered my valcyte dose to 1350 per day and I am taking 1000mg inosine and 3000mg lysine (1000 3x a day) also. My titer was originally 1:1280, so it came down quite a bit, but now appears stuck even on high doses of valcyte.

On the plus side, everything in my cbc, liver and kidney function tests were normal. My ALT even came down from 41 to 31 while I was on a higher dose of valcyte. So I'm not too concerned about side effects. But I'm not really feeling better either. So, at a loss.

This week has absolutely sucked. I was hoping for some more promising news.

I wouldn't worry. IgG titres are not a direct measure of level of infection. They measure the amount of antibodies to the virus your body is producing. Your body will produce IgG antibodies for decades after the infection. This is where the rule of thumb that high IgG titres are insignificant comes from. You can't count on titres dropping rapidly. Success of treatment is judged by symptoms, not titres. And you want to have some antibodies to keep the HHV6 latent.

Most people with ME/CFS seem to need about 18 months of Valcyte, so don't worry that you're not seeing rapid changes. You are already seeing some affect, it appears, which is a very positive sign.

For perspective~ I didn't notice much for 3-4 months, then was worse for about 2 months, and then felt a lot better by 8-9 months. I was on Valcyte for 2 years. During that time my titres increased and decreased. The most likely explanation for the increase was that my immune system got stronger and started producing more antibodies -- which were needed to fight a massive infection.

 

[August59]

Stay on your Valcyte because you haven't been on it long enough to bring down HHV-6 titres. Probably will not see any effect till at a minimum of 6 months.

 

[vamah]

Stay on your Valcyte because you haven't been on it long enough to bring down HHV-6 titres. Probably will not see any effect till at a minimum of 6 months.

Actually I have been on valcyte for 8 months now, just not at such a high dose the whole time. But realize it can take a while to feel results. I guess I just need to train myself to be more patient.

 

[abporter]

I wouldn't worry. IgG titres are not a direct measure of level of infection. They measure the amount of antibodies to the virus your body is producing. Your body will produce IgG antibodies for decades after the infection. This is where the rule of thumb that high IgG titres are insignificant comes from. You can't count on titres dropping rapidly. Success of treatment is judged by symptoms, not titres. And you want to have some antibodies to keep the HHV6 latent.

Most people with ME/CFS seem to need about 18 months of Valcyte, so don't worry that you're not seeing rapid changes. You are already seeing some affect, it appears, which is a very positive sign.

For perspective~ I didn't notice much for 3-4 months, then was worse for about 2 months, and then felt a lot better by 8-9 months. I was on Valcyte for 2 years. During that time my titres increased and decreased. The most likely explanation for the increase was that my immune system got stronger and started producing more antibodies -- which were needed to fight a massive infection.

I just read this on http://www.herpes.com/hhv-6.html which suggests that elevated IgG antibodies is an indicator. Just curious about why high IgG titres are insignificant. Trying to understand.

"How is HHV-6 Diagnosed?
Virus detection is not practicable as a routine diagnostic procedure. PCR DNA tests can detect HHV-6 but with difficulty. Indirect evidence of the HHV-6 antibodies are easier to find than the HHV-6 virus itself. Therefore elevated IgG antibody levels may be the only indication of a reactivated chronic central nervous system (CNS) HHV-6 infection."

 

[vamah]

I just read this on http://www.herpes.com/hhv-6.html which suggests that elevated IgG antibodies is an indicator. Just curious about why high IgG titres are insignificant. Trying to understand.

"How is HHV-6 Diagnosed?
Virus detection is not practicable as a routine diagnostic procedure. PCR DNA tests can detect HHV-6 but with difficulty. Indirect evidence of the HHV-6 antibodies are easier to find than the HHV-6 virus itself. Therefore elevated IgG antibody levels may be the only indication of a reactivated chronic central nervous system (CNS) HHV-6 infection."

I think SOC was not saying that they are insignifficant, so much as that they may not be a good in indicator of short term progress because they may stay high as the body continues to fight the infection.

@SOC let me know if I am wrong about that.

That being the case, my plan is to continue on 1350 valcyte per day and maybe retests in 6 mos to see where my titers are. Frequent testing seems to just increase my anxiety level.

 

[SOC]

I just read this on http://www.herpes.com/hhv-6.html which suggests that elevated IgG antibodies is an indicator. Just curious about why high IgG titres are insignificant. Trying to understand.

"How is HHV-6 Diagnosed?
Virus detection is not practicable as a routine diagnostic procedure. PCR DNA tests can detect HHV-6 but with difficulty. Indirect evidence of the HHV-6 antibodies are easier to find than the HHV-6 virus itself. Therefore elevated IgG antibody levels may be the only indication of a reactivated chronic central nervous system (CNS) HHV-6 infection."

Most doctors believe that high IgG titres only mean you had an infection in the past, not that you have a current infection and are therefore insignificant. (They are wrong.) This is because IgG titres can remain high long after the infection has cleared. It is this gross oversimplification that has resulted in many PWME with high titres being incorrectly told they don't have a chronic infection.

What actually occurs is that your body produces IgM antibodies early in the primary infection and then IgG antibodies develop a little later. The IgM antibodies disappear after a relatively short time, but the IgG antibodies hang around to give you continuing immunity -- assuming everything is working correctly. IgG antibodies decline slowly over time, however, so one can eventually lose immunity. That is the reason for the "shingles vaccine". It's just a chicken pox booster for people who are old enough that it's been a long time since they had chicken pox so their IgG antibodies have declined and they become susceptible to reactivation of the varicella virus resulting in shingles.

Adults who are long past their original hhv-6 infection, which usually occurs before age 2, are unlikely to have extremely high IgG titres. If they do, it suggests (not guarantees) that they have a currently active or frequently reactivating infection which is keeping the IgG titre high. This is not a certainty because some healthy people can also have high IgG titres. A high IgG titre along with symptoms of active herpesviral infection (which most PWME have) is strongly indicative of a chronic active infection.

So, the point is that IgG titres do not directly track the level of infection. A high titre in an adult, along with appropriate symptoms, is certainly a reason for concern and probably treatment. However, the IgG antibody titre can stay high even as the level of infection decreases, so it is not a useful measure of effectiveness of treatment.

 

[SOC]

I think SOC was not saying that they are insignifficant, so much as that they may not be a good in indicator of short term progress because they may stay high as the body continues to fight the infection.

@SOC let me know if I am wrong about that.

That being the case, my plan is to continue on 1350 valcyte per day and maybe retests in 6 mos to see where my titers are. Frequent testing seems to just increase my anxiety level.

LOL! You are absolutely right and a lot more concise than I was in explaining it.

I think only testing titres every 6 months is a good idea. Who needs the extra stress? Even so, don't be surprised or worried if your titres don't drop, or even if they increase. At this point the titre is more a measure of how your immune system is working than it is a measure of the level of infection.

 

[vamah]

Should mention that people with chromasomally integrated hhv6 can have very high titers in absence of active infection. There is a different test they can do to to confirm this, I think it is a pcr test. I have considered having it done, but a little worried about the possible implications.

 

[abporter]

Thank you for the information! My HHV-6 titers were 1:320 back in 2008. I took Valtrex for several months before seeing a doctor who started treating other things and I stopped Valtrex at some point during that time. However, it seems like Valcyte is the drug of choice to treat HHV-6, but several thousand dollars a month is a stretch for me to pay (if it still costs that much). However, since I'm on disability now, I don't know if Medicare would cover some of the cost for PWME/CFS. I just started LDN and it has helped some. I will see De Meirleir for the first time this week in Reno and see what he says. He may have me try GcMaf, which I game for. Whatever works!!! Thanks again for your helpful info!

 

[vamah]

Thank you for the information! My HHV-6 titers were 1:320 back in 2008. I took Valtrex for several months before seeing a doctor who started treating other things and I stopped Valtrex at some point during that time. However, it seems like Valcyte is the drug of choice to treat HHV-6, but several thousand dollars a month is a stretch for me to pay (if it still costs that much). However, since I'm on disability now, I don't know if Medicare would cover some of the cost for PWME/CFS. I just started LDN and it has helped some. I will see De Meirleir for the first time this week in Reno and see what he says. He may have me try GcMaf, which I game for. Whatever works!!! Thanks again for your helpful info!

Valcyte is still very expensive, but medicare may cover if your doctor says it is for hhv6. Don't have him say it is for me/cfs. Valcyte is approved treatment for hhv6.

 

[Christopher]

Is there any reason igg would be low with a recurring infection?

are you all using focus dx for labwork?

 

[SOC]

Is there any reason igg would be low with a recurring infection?

are you all using focus dx for labwork?

A low overall IgG would leave you susceptible to recurring infections, most commonly respiratory/sinus/ear infections. If you're asking whether low IgG to a specific infection such as HHV6 leaves you more susceptible to HHV6 reactivations.... I'm not sure how that works. Maybe it would if your HHV6 IgG was nearly zero even though you have a latent infection.

 

[Christopher]

right. what I meant was is it possible that an hhv6 infection is interfering with antibody generation. So you would have an infection but your igg would be low.

 

[vamah]

right. what I meant was is it possible that an hhv6 infection is interfering with antibody generation. So you would have an infection but your igg would be low.

If your immune system is not functioning properly, then you could not be generating antibodies. You could see if there is a pcr test, which would test for the actual infectious agent.