Update On Twins

[sf_mom]

This past month we ran a bunch of new tests and reran some lab work for our twins. This morning we had a follow-up appointment to review results and treatment progress.

 

I've been super concerned about our twins IgG 1 and 3 deficiencies since we were choosing not to do IVIG with them. I was told by our Dr. originally these deficiencies would resolve with treatment. Although they are still showing deficient in these subclasses, things are heading in the right direction. Its slow going but its progress. For example: DD IgG was 13 last June, today's results were 15, normal is 17 to 25 for her age group. These numbers had only dropped over the last year.... so, improvement.

 

I was surprised to find out that both my twins have very high viral titers for HHV6, Coxsackie Virus.... The Dr. finds it very interesting that both my twins 'faternal boy/girl' have similar rashes over their entire bodies and are resolving 'almost' at the same rate and have same associated viruses. We have had them on an anti-viral protocol for over a year now but will add to protocol even further with additional herbs. Similar to a co-infection these viruses can take predominance as you treat the Lyme/co-infections. My understanding is it draws the viruses out.

 

Somehow we got on the topic of Lyme triggers today. Apparently, a huge trigger for children are the MMR vaccinations at 1 and 4 years of age..... Our older son was three weeks post his MMR vaccination at 4 years old when we had our first coughing TIC crop up. Again, Pediatrician thought it was a sinus infection. We delayed 1st year vaccination with our twins until they were approximately 18 months old due to the one twins Kawasaki's illness. I believe it was after that point that our twins began to get sick regularly.

 

DD has also had encopresis issues within the last week. Surprisingly Dr. felt it was a herx response. I did not identify that it was at the 4th week after a rotating to Cedax.... We are holding protocol another two weeks to see if it resolves. If it does we are to assume herx.

 

DS2 has been treated for Babesia for about six months now. Recently we noticed his anxiety level was up and he is often 'restless' and pacing back and fourth..... As the Babesia fades, Bartonella rears its ugly head and we are rotating to treat the Bartonella more directly.

 

-Wendy

Edited March 22, 2011 by SF Mom

[laure]

This past month we ran a bunch of new tests and reran some lab work for our twins. This morning we had a follow-up appointment to review results and treatment progress.

 

I've been super concerned about our twins IgG 1 and 3 deficiencies since we were choosing not to do IVIG with them. I was told by our Dr. originally these deficiencies would resolve with treatment. Although they are still showing deficient in these subclasses, things are heading in the right direction. Its slow going but its progress. For example: DD IgG was 13 last June, today's results were 15, normal is 17 to 25 for her age group. These numbers had done nothing but gone down in the prior year.

 

I was surprised to find out that both my twins have very high viral titers for HHV6, Coxsackie Virus.... The Dr. finds it very interesting that both my twins 'faternal boy/girl' have similar rashes over their entire bodies and are resolving 'almost' at the same rate and have same associated viruses. We have had them on an anti-viral protocol for over a year now but will add to protocol even further with additional herbs. Similar to a co-infection these viruses can take predominance as you treat the Lyme/co-infections. My understanding is it draws the viruses out.

 

Somehow we got on the topic of Lyme triggers today. Apparently, a huge trigger for children are the MMR vaccinations at 1 and 4 years of age..... Our older son was three weeks post his MMR vaccination at 4 years old when we had our first coughing TIC crop up. Again, Pediatrician thought it was a sinus infection. We delayed 1st year vaccination with our twins until they were approximately 18 months old due to the one twins Kawasaki's illness. I believe it was after that point that our twins began to get sick regularly.

 

DD has also had encopresis issues within the last week. Surprisingly Dr. felt it was a herx response. I did not identify that it was at the 4th week after a rotating to Cedax.... We are holding protocol another two weeks to see if it resolves. If it does we are to assume herx.

 

DD2 has been treated for Babesia for about six months now. Recently we noticed his anxiety level was up and he is often 'restless' and pacing back and fourth..... As the Babesia fades, Bartonella rears its ugly head and we are rotating to treat the Bartonella more directly.

 

-Wendy

 

The MMR piece reminds me of a neighbor we had who had MS and said she felt it was related to the MMR vaccine. This was in 1991 when my oldest was born. Consequently we did not get him the MMR until Kindergarden. Wish I followed that same path with my next two kids, maybe we wouldn't be in this boat with poor dd10 now.

Wendy your doctor sounds amazing and thorough...it really helps that you post all that you do, because so many of us don't have doctors like that, who spend that kind of time with us and try so many avenues to restore health. At least it helps us to ask the right questions, and use those supplements we can acquire on our own. Thanks for your tremendous time and effort posting!

[adkmom]

Diddo what Laura said! Every little bit seems to help and you're always giving valuable information. Colin was already infected with Lyme and had his first Pandas exaccerbation after his 4 year vacinnation. Wendy - how do you change up treatment for Bartonella? We suspect Colin has it but still waiting to see Dr. Jones to get on the right treatment plan?

 

Still waiting for peace in my house

 

Again, many thanks.

 

darlene

[sf_mom]

Our Dr. builds the protocol/rotates..... We first added Cedax to older son's and Rifampin younger daughter's protocol and watched for treatment response and things to settle. Approximately 6 weeks later added Rifampin to older son's and Cedax to younger DD. Apparently the combo of Cedax/Rifampin really gets at the Bartonella in the brain. He is always taking into consideration treatment response and when we get a good response in one child he typically rotates the other children towards that antibiotic. We are in process of rotating to Rifampin in younger DS this week.

 

Thanks for the kind words guys... Keeps me motivated.

 

-Wendy

[Iowadawn]

High HHV6 here as well. Also myco & babesia. Ditto on clearing the babesia & bartonella ramping up w/ Evan. Today was the first time I have heard in--over 9 mo? that Evan mentioned his shins hurting. I know thAt goes w/ lyme. dawn

[philamom]

Thank you Wendy for the update. Such a thorough doctor! Dd also has high HHV6 titer.