HHV6 Titers and antiviral ?

[Suzan]

We saw our neurologist today and he helped explain why he ran the titers for HHV6 (and other herpes viruses). This is the best I can do to reiterate what he said...

 

When kids get this virus, a healthy child will process the virus and it will go away. Other kids with immune systems that don't work properly will hold onto the virus and keep trying to fight it in incorrect ways. It is a virus that is commonly causing all kinds of neurological problems. He will be reviewing my dd8's file to see if the thinks the "treatment" might benefit her. The treatment is not agreed upon by all docs because some believe that the titers only show whether or not you had the virus, not whether there are problems... but it is an anti-viral drug.

 

I am worried about this since my dd showed signs of tourettes when she had to take Tamiflu (I never knew if it was the flu or the drug that caused it). Has anyone used an anti-viral drug with good (or bad) results?

 

We see the immunologist on the 14th and he will be sending her his recommendations regarding the new information I gave him (a complete list of symptoms and a daily log for the past month).

 

Thanks,

 

Susan

[heatherdawn]

I see your post is old, but I just did a search because we just had a bad experience. A doctor put my dd9 on anti-virals and hydrocortisone and she developed blistering sores on her scalp 5 days after. How was your experience?

[LNN]

Heatherdawn,

You may want to PM Suzan - she is mostly on the lyme forum now. FWIW, my son also had a negative reaction to Tamiflu a few weeks after this original post (it was when H1N1 was rampant). He developed symptoms of tardive dyskinesia that stopped as soon as we stopped the Tamiflu. Don't know if it's coincidence or not, but both Suzan's daughter and my son were later diagnosed with lyme/bartonella and tested with elevated viral titers (various viruses). For my son, we found he his body does not correctly utilize zinc (called pyroluria). I think Suzan is also treating her daughter for the same condition, but she has two daughters, so I may be confusing the two girls.

[Suzan]

Hi, there, I did get an email about your post here so I popped over to see what your question was. I am sorry about your bad experience! What was the antiviral she took?

 

My dd with the high HHV6 is my 10 yr old. My 8 yr old has not been tested though so I'm not sure about her. But my 10 yr old, she ended up taking Valtrex for at least 6 months. I did notice an improvement in her behavior. I think it did help to clear the virus and did help with the overall picture. So Valtrex was OK for her in the end.

 

LLM is right however, we have gone on to a lyme/bartonella diagnosis for us all. I know that many lyme patients don't react well to steroids so it makes me wonder about the hydrocortisone that your dd was given. dd8 has lyme/bartonella and the zinc deficiency that LLM mentions.

 

You also remind me of some blistering sores that dd10 got all over her legs. The dermatologist told me it was molluscum but I always thought it was more than that. It cleared up when she started antibiotics (zithromax) for pandas treatment.

 

Susan

[NancyD]

Hey Susan,

 

Specifically what kind of improvement did you see with Valtrex? Any side effects? Did you keep Lyme/Bartonella tx the same while on it? My DD just tested high on HHV6 also and Dr wants to put her on Valtrex soon. She is already on Augmentin XR, Doxy, and pulsing with Azyth and Tindamax for Lyme/Bartonella/PANDAS.

 

Nancy

[heatherdawn]

Suzan,

She took Acyclovir. But that is a really good point about the hydrocortisone, too; as she did not react well to prednisone which made her lethargic and difficult to breath, like her lungs were too tired to work. Her positive lyme bands were 34 & 41. We have not looked into lyme treatment yet, as it's hard to find in TX.

She has been on Biaxin for the last 6 months for mycoplasma so it seems strange that they would show up anyway.

[Suzan]

Hi there Nancy D!

 

We did the valtrex before we knew about the lyme, started 11/09 (has that much time really gone by?). She was on zithromax at the time but that it is (along with supplements, probiotics) and we were pretty much in the thick of things with her symptoms of ocd and pain. I did not see any negative stuff that I could attribute to the valtrex. I did notice that when I would stop it, her behavior would get worse and when I started it again, her behavior would get better. Not normal, just not as bad. I would not say it was the most useful thing we did, but it was useful. I think clearing as many viruses as you can will help get rid of the lyme and strep.

 

Good luck with the valtrex. I would be interested in hearing how she does on it.

 

Susan

Edited September 7, 2011 by Suzan

[Suzan]

Suzan,

She took Acyclovir. But that is a really good point about the hydrocortisone, too; as she did not react well to prednisone which made her lethargic and difficult to breath, like her lungs were too tired to work. Her positive lyme bands were 34 & 41. We have not looked into lyme treatment yet, as it's hard to find in TX.

She has been on Biaxin for the last 6 months for mycoplasma so it seems strange that they would show up anyway.

 

I'm not familiar with Acyclovir but sounds like it could be the hydrocortisone. Hope you find a good doc to look at the lyme. I have heard TX is tough to find. I hope her blisters get better fast!

[heatherdawn]

Thanks Suzan, I really think you're onto something with the hydrocortisone. What bothers me is that the doctors haven't picked up on the connection:( They just scratch their heads, no pun intended:)

[NancyD]

Thanks Susan...I'll let you know how it goes. Still working on Bartonella. Had to take DD off Rifampin and Biaxin due to elevated liver and GI problem. Then anti-DNASE B was up ~575 so we put her back on Augmentin XR and added the doxy. I hate adding yet another med but if clearing the HHV6 helps to clear the TBIs then it's worth it. I've been on Rifampin for over a month now -- boy does that pack a punch! We'll have to catch up with one another!

 

Hi there Nancy D!

 

We did the valtrex before we knew about the lyme, started 11/09 (has that much time really gone by?). She was on zithromax at the time but that it is (along with supplements, probiotics) and we were pretty much in the thick of things with her symptoms of ocd and pain. I did not see any negative stuff that I could attribute to the valtrex. I did notice that when I would stop it, her behavior would get worse and when I started it again, her behavior would get better. Not normal, just not as bad. I would not say it was the most useful thing we did, but it was useful. I think clearing as many viruses as you can will help get rid of the lyme and strep.

 

Good luck with the valtrex. I would be interested in hearing how she does on it.

 

Susan

[Suzan]

Thanks Suzan, I really think you're onto something with the hydrocortisone. What bothers me is that the doctors haven't picked up on the connection:( They just scratch their heads, no pun intended:)

 

When I was younger, I would have horrible reactions to doxycicline and any of that family of anitbiotics. I would get super strange nerve pain up and down my legs that was horribly painful and burning. In retrospet, I know now it was because I had lyme and I was herxing. I would go to the doctors and they would insist that it was not related to the medication and it was not an allergic reaction or anything. It only happened while on the medicine. So you just reminded me of that story with your doc's reaction.

 

HUGS!

 

Susan