Increased Zith Udate

[Suzan]

I can say with confidence that the increased zithromax did drastically improve my dd. She's been on it for 4 days and she has been a different girl. She has had glimpses into her dark behavor in the evenings and surrounding some of her trigger tasks (taking pills and sharing) and she cries that she doesn't want it to come back. I don't think I can keep her on this dose for long. We see our immunologist on Monday and I will discuss it with her. She does not know I increased it yet.

 

DD is voluntarily washing the dishes right now and asked "Have I been having a good attitude today?" She's doing it to try to get her own phone but I know she's doing it becuase she feels better. 4 days ago, she would not have been able to do it, even for a phone because she would not want to put her hand down close to the drain through the dish water. Yesterday she caught a bug and set it free outside and she asked to take a shower last night. She has been refusing showers for several weeks now.

 

Susan

[faith]

Susan,

very interesting. could you refresh me on how old/weight your daughter is? So prior to this it was 250 mgs. a day on zith, and you did not see the good effects you seem to be seeing now?

 

Could you also tell me about the "Valtrex' that you mentioned on the other thread? what is that and what is it supposed to do re virus? is this a medication? who recommended this?

 

thanks

faith

[Suzan]

Susan,

very interesting. could you refresh me on how old/weight your daughter is? So prior to this it was 250 mgs. a day on zith, and you did not see the good effects you seem to be seeing now?

 

Could you also tell me about the "Valtrex' that you mentioned on the other thread? what is that and what is it supposed to do re virus? is this a medication? who recommended this?

 

thanks

faith

 

She is 8 yrs old and is 70 lbs and pretty tall (4 feet 10 inches maybe) - Edit: She can't be that tall, maybe 4ft 7")

 

She was on 250 mg daily and we saw an initial improvement the first 6 weeks but then as we started weaning her down, things went down hill and never got back to what it was even after going back on 250 mg daily and was getting worse. I double her dose to 500 mg daily and I noticed a change in less than 24 hours.

 

We are starting the Valtrex today. This is a medication they use to get rid of herpes, it's an antiviral and I think it's used to clear all kinds of viruses. My dd has elevated HHV6 titers and she gets a lot of canker sores. Our neurologist and Dan! doc thinks that if we can clear this virus (and any others that may be stuck and not being processed correctly like what happens to our kids with strep) that she may have an improvement. Our doc's both agree that HHV6 virus especially can cause neurological issues including OCD. Our Dan! doc was pretty excited about this possibility and we have a 6 month prescription. We are to do it for a month and note any improvements and try to cut back on the antibiotics then (but this was all before I found the improvement from doubling the zith).

 

Susan

[Guest Angela Shaw]

I can say with confidence that the increased zithromax did drastically improve my dd. She's been on it for 4 days and she has been a different girl. She has had glimpses into her dark behavor in the evenings and surrounding some of her trigger tasks (taking pills and sharing) and she cries that she doesn't want it to come back. I don't think I can keep her on this dose for long. We see our immunologist on Monday and I will discuss it with her. She does not know I increased it yet.

 

DD is voluntarily washing the dishes right now and asked "Have I been having a good attitude today?" She's doing it to try to get her own phone but I know she's doing it becuase she feels better. 4 days ago, she would not have been able to do it, even for a phone because she would not want to put her hand down close to the drain through the dish water. Yesterday she caught a bug and set it free outside and she asked to take a shower last night. She has been refusing showers for several weeks now.

 

Susan

 

Suzan,

That is awesome that you are seeing results so quickly. Why do you think you can't keep her on that dose for long?

Angela

[monarchcat]

I'm so glad that the increased dose helped! That is really interesting to me because it is something I think about doing. Please keep us updated on what the dr says and how long you continue on this dose!

[smartyjones]

susan

so glad to hear things are going better!

 

i'd be very interested to hear what happens with the herpes connection and treatment. did you think she had reactions to the chickenpox vaccines? so you're thinking she is having trouble with both strep and herpes? you did immunological workups to find out that connection, right?

 

i think we've written before about that possible connection - my son had a horrible mouth rash with first pandas exacerbation and with 2nd one, the line under his mouth was the first sign. when i got dr. notes, i saw i had called thinking he was having a reaction to chickenpox vacc that i didn't remember and can't remember any details about now.

 

kathy

[matis_mom]

We are starting the Valtrex today. This is a medication they use to get rid of herpes, it's an antiviral and I think it's used to clear all kinds of viruses. My dd has elevated HHV6 titers and she gets a lot of canker sores. Our neurologist and Dan! doc thinks that if we can clear this virus (and any others that may be stuck and not being processed correctly like what happens to our kids with strep) that she may have an improvement. Our doc's both agree that HHV6 virus especially can cause neurological issues including OCD. Our Dan! doc was pretty excited about this possibility and we have a 6 month prescription. We are to do it for a month and note any improvements and try to cut back on the antibiotics then (but this was all before I found the improvement from doubling the zith).

 

Susan

Susan,

My son also has elevated HHV6 titers... I can't find the number right now. Do you mind sharing what your daughter's numbers are?

 

Isabel

[Suzan]

We are starting the Valtrex today. This is a medication they use to get rid of herpes, it's an antiviral and I think it's used to clear all kinds of viruses. My dd has elevated HHV6 titers and she gets a lot of canker sores. Our neurologist and Dan! doc thinks that if we can clear this virus (and any others that may be stuck and not being processed correctly like what happens to our kids with strep) that she may have an improvement. Our doc's both agree that HHV6 virus especially can cause neurological issues including OCD. Our Dan! doc was pretty excited about this possibility and we have a 6 month prescription. We are to do it for a month and note any improvements and try to cut back on the antibiotics then (but this was all before I found the improvement from doubling the zith).

 

Susan

Susan,

My son also has elevated HHV6 titers... I can't find the number right now. Do you mind sharing what your daughter's numbers are?

 

Isabel

 

Isabel, I never saw the results, I hope to see them on Monday. I feel like the result was 1:80 was normal and my dd was 1:90 but don't rely on that. I could be way off (normal 1:40?? see, I can't remember!). I will let you know when I find out.

 

I just ran across this when trying to find the lab ranges. I found it very interesting! And I want to know if A and B variants were tested. I imagine not.

 

http://vipdx.com/hhv6/

 

Human Herpesvirus Type 6

A number of recent publications have demonstrated a statistical association between persistent infection with Human Herpesvirus Type VI (HHV-6) and a number of chronic immune diseases (e.g., multiple sclerosis, B-cell lymphoma). Since persistent viral infection can cause over-induction of the interferon inducible enzymes – one of the biochemical hallmarks in CFS patients- detection of HHV-6 infection may be important as a biological marker of active autoimmune disease. There are two distinct subtypes of HHV-6: A and B variants. Type A is associated with more severe disease while Type B occurs within the general population often without associated morbidity.

 

While HHV-6-B roseola infections are easily detected, HHV-6-A detection is more difficult. The “A” variant can remain active in brain tissue, often with no trace in the serum.

 

One reason that it is difficult to detect HHV-6 is that since over 95% of us have been exposed to HHV-6-B in the past and since HHV-6 remains latent in cells, tests must be done serum (the clear liquid portion of the blood) to differentiate active from latent infection. In most viral infections, large numbers of virions spill into the plasma when the virus is replicating but this is not the case with HHV-6 because it is spread largely cell-to-cell or directly through the cells’ walls. This means that very little of it ends up in the serum so PCR tests must be extremely sensitive to persistent HHV-6 infections, once the acute phase is over. The “A” variant is 13% different in genome from the “B” variant and is more aggressive and lytic to the cells it infects.

[Suzan]

susan

so glad to hear things are going better!

 

i'd be very interested to hear what happens with the herpes connection and treatment. did you think she had reactions to the chickenpox vaccines? so you're thinking she is having trouble with both strep and herpes? you did immunological workups to find out that connection, right?

 

i think we've written before about that possible connection - my son had a horrible mouth rash with first pandas exacerbation and with 2nd one, the line under his mouth was the first sign. when i got dr. notes, i saw i had called thinking he was having a reaction to chickenpox vacc that i didn't remember and can't remember any details about now.

 

kathy

 

Kathy, I don't remember any reaction to this vaccine but I was not looking for those connections at that time. There was nothing overly obvious that sticks out in my mind. We did do blood work to find this out, our Ped. Neurologist thought it might be a problem for her. He also tested 2 other herpes titers which were both normal. We started the Valtrex tonight. I will report if I note anything worthwhile.

 

Susan

[momtocole1]

Dear Susan,

 

I am so excited for you about how the increased Zithromax is helping your daughter. We took out son off the Augmenting 3 day ago and put him on 500 mg. of Zithromax and we have noticed quite a bit of improvement. He is still struggling significantly in other ways but overall he is happier. What part of the US are you in. There has been some discussion regarding a strong strep strain in Cal. that is resistant but seems to respond well to Zithromax.

 

Can I also ask you what your daughters HHV6 numbers were?

 

After reading your post, I went back and looked at my sons that were done recently.

 

He showed: HHV-6 IgG Antibodies, Quant - 1:80

 

The results range says:

<1:20 = Negative

 

1:20 - 1:80 -= Equivocal

 

>1:160 = Positive

 

My son is at the very top of the equivocal range, but not in the positive range. He does get impetigo sores frequently and canker sores here and there.

 

I just wanted to compare.

 

Please, please keep us posted on how your daughter does on the Valtrex....

Thanks,

Judy...

 

Susan,

very interesting. could you refresh me on how old/weight your daughter is? So prior to this it was 250 mgs. a day on zith, and you did not see the good effects you seem to be seeing now?

 

Could you also tell me about the "Valtrex' that you mentioned on the other thread? what is that and what is it supposed to do re virus? is this a medication? who recommended this?

 

thanks

faith

 

She is 8 yrs old and is 70 lbs and pretty tall (4 feet 10 inches maybe) - Edit: She can't be that tall, maybe 4ft 7")

 

She was on 250 mg daily and we saw an initial improvement the first 6 weeks but then as we started weaning her down, things went down hill and never got back to what it was even after going back on 250 mg daily and was getting worse. I double her dose to 500 mg daily and I noticed a change in less than 24 hours.

 

We are starting the Valtrex today. This is a medication they use to get rid of herpes, it's an antiviral and I think it's used to clear all kinds of viruses. My dd has elevated HHV6 titers and she gets a lot of canker sores. Our neurologist and Dan! doc thinks that if we can clear this virus (and any others that may be stuck and not being processed correctly like what happens to our kids with strep) that she may have an improvement. Our doc's both agree that HHV6 virus especially can cause neurological issues including OCD. Our Dan! doc was pretty excited about this possibility and we have a 6 month prescription. We are to do it for a month and note any improvements and try to cut back on the antibiotics then (but this was all before I found the improvement from doubling the zith).

 

Susan

[Suzan]

Dear Susan,

 

I am so excited for you about how the increased Zithromax is helping your daughter. We took out son off the Augmenting 3 day ago and put him on 500 mg. of Zithromax and we have noticed quite a bit of improvement. He is still struggling significantly in other ways but overall he is happier. What part of the US are you in. There has been some discussion regarding a strong strep strain in Cal. that is resistant but seems to respond well to Zithromax.

 

Can I also ask you what your daughters HHV6 numbers were?

 

After reading your post, I went back and looked at my sons that were done recently.

 

He showed: HHV-6 IgG Antibodies, Quant - 1:80

 

The results range says:

<1:20 = Negative

 

1:20 - 1:80 -= Equivocal

 

>1:160 = Positive

 

My son is at the very top of the equivocal range, but not in the positive range. He does get impetigo sores frequently and canker sores here and there.

 

I just wanted to compare.

 

Please, please keep us posted on how your daughter does on the Valtrex....

Thanks,

Judy...

 

Hi Judy, I am in North Carolina. There has been some talk about a strong strep strain here too since we have a growing population of pandas kids. I think my dd's hhv6 titer was 1:90. If so, does that mean that it's in between equivocal and positive? I hope I get a copy of the report tomorrow. I am glad your son is showing signs of improvement too. I was trying to decide today how much improved dd is in 5 days. I'd say she's at 90% at least. Maybe even 95%. Since she has had pandas for so long, I don't even know what 100% means.

 

Susan

[Suzan]

Suzan,

That is awesome that you are seeing results so quickly. Why do you think you can't keep her on that dose for long?

Angela

 

 

Angela, I forgot to respond yesterday.... I guess, I don't have enough antibiotics to cover this dose for long so I'd need to get a doc to agree to it and also, maybe I am thinking since this is double the normal dose, it would not be good for her (gut and candida, etc.) but really, I don't know what I"m talking about. If it continues to work, I want to find someone who will do it. I guess I also think it's going to stop working eventually....

 

Susan

[mom md]

I am wondering if the effect of the antibiotics are not because it is wiping out strep but modulationg/suppressing the immune response. I don't know that answer but it would be nice to ask the immunologist.

[momtocole1]

Dear Suzan, That is a good question about whether she is in between the equivocal and positive range. I wish I knew the answer. I will ask my immunologist tomorrow at appt. What is even more confusing is that I think different labs can show different ranges as to what is normal and what is not, then different docs have different opinions. For example, my son's IgG numbers were very end of normal range for two subclasses and also for total IgG, I mean rock bottom of normal range. Dr. K. said he was not impressed by any of those numbers. This is frustrating... I am hoping that the immno IS impressed with those numbers so that the IVIG will get covered.

 

I am going to talk to my son's ped who is a DAN doctor about the HHV6 numbers. Thanks again for posting this.

I love this forum!

 

Thanks,

Judy...

 

Dear Susan,

 

I am so excited for you about how the increased Zithromax is helping your daughter. We took out son off the Augmenting 3 day ago and put him on 500 mg. of Zithromax and we have noticed quite a bit of improvement. He is still struggling significantly in other ways but overall he is happier. What part of the US are you in. There has been some discussion regarding a strong strep strain in Cal. that is resistant but seems to respond well to Zithromax.

 

Can I also ask you what your daughters HHV6 numbers were?

 

After reading your post, I went back and looked at my sons that were done recently.

 

He showed: HHV-6 IgG Antibodies, Quant - 1:80

 

The results range says:

<1:20 = Negative

 

1:20 - 1:80 -= Equivocal

 

>1:160 = Positive

 

My son is at the very top of the equivocal range, but not in the positive range. He does get impetigo sores frequently and canker sores here and there.

 

I just wanted to compare.

 

Please, please keep us posted on how your daughter does on the Valtrex....

Thanks,

Judy...

 

Hi Judy, I am in North Carolina. There has been some talk about a strong strep strain here too since we have a growing population of pandas kids. I think my dd's hhv6 titer was 1:90. If so, does that mean that it's in between equivocal and positive? I hope I get a copy of the report tomorrow. I am glad your son is showing signs of improvement too. I was trying to decide today how much improved dd is in 5 days. I'd say she's at 90% at least. Maybe even 95%. Since she has had pandas for so long, I don't even know what 100% means.

 

Susan

[mama2alex]

This is great news! So glad to hear you are seeing good results.

 

We tried upping the Zith to 375mg per day and have seen nothing. I can't understand why, unless we've already knocked out the strep and he just has residual inflammation in his brain. In any event, we are doing IVIG in 3 weeks and we'll see if that helps him. He had a great response to prednisone, so I do believe he has PANDAS and hope the IVIG will help. gIf we see results with the IVIG, we'll have to figure out what would be the best long term dose of abx.

 

I think my son had elevated HHV-6 a few years ago, but I'll have to go back and look at the labs. They didn't do anything about it at the time, but maybe I'll talk to our DAN doc about retesting and potentially trying Valtrex. Please keep us posted on how this works out.

 

Thanks again for posting the update!