Anyone have experience with Coxsackie Virus?

[minimaxwell]

@3boysmon. Just curious, have you had ivig?

[sf_mom]

All three of our children have elevated A and B Coxsackie's titers. We have been treating viruses for the last couple of years with a rotation of herbal anti-viral's and older DS's Coxsackies titers are finally 1:200 and all other viruses are sub negative. We used Virograhphis, Andrographis, A-C by Byron White 'Specifically Formulate for Coxsackie's', Engystol, Olive Leaf Extract 2,000 m.g., to name a few. We rotated the herbals about every 12 weeks. We did notice viral outbreaks and an increase in overall symptoms from die-off/herx response when treating. Overall symptoms increased within 48 to 72 hours with mouth sores appearing between 3 and 6 weeks after starting new anti-viral. Prior to treating we had absolutely no physical or visible sign of chronic virus.

 

One thing I have learned is viruses love to bind to heavy metals like mercury and lead. I would highly recommend testing for heavy metals if you are dealing with high titers and more than one virus. Our children also showed high titers for two more viruses. All of our children have elevated lead and mercury. Heavy metals are easy to collect especially with an immune compromised child and especially if you have mercury fillings or eat a lot of fish. My children have no fillings and rarely eat fish. Our Dr. felt there was an environmental source due to the fact all of them tested similarly so we tested our home drinking water and it came back positive for high chlorine, lead and hint of pesticides. We now have a more extensive filtering system that will address heavy metals as our Britta was not doing the job. These metals can be in bottle water, school water, etc. It only cost $24.00 to test our water and a couple hundred to add filtering system to kitchen sink and showers. However, chelation will take at least another year of treatment but apparently lead is the easiest to draw out. We did heavy metals testing through Dr. DATA Lab and our Dr.

 

Heavy metals will really drag on your body and cause continued issues impacting the gut, depletion in vitamins/minerals and allows yeast to proliferate. Norcalmom just posted extensive information on heavy metals/mercury. It is interesting how mercury binds mostly to sulphur. Our kinds were dealing with Oxidative Stress and made huge advancements when we added larger amounts of natural sulphur to their daily supplement list. It is encouraged to have a sulphur rich diet if you are suffering from heavy metals especially mercury.

 

Anyway, I've probably overwhelmed you..... Two main take aways from our experience: viruses can take for ever to see titers drop and at some point if viral titers are unrelenting check for heavy metals.

Edited January 19, 2013 by SF Mom

[3boysmom]

@3boysmon. Just curious, have you had ivig?

 

 

Yes, DS had 6 with Dr. B. Dr. T suggested we test for it and also test for mitochondrial DNA which I had never heard of before, but after reading about it I am now wondering.

[3boysmom]

@3boysmon. Just curious, have you had ivig?

 

 

Yes, DS had 6 with Dr. B. Dr. T suggested we test for it and also test for mitochondrial DNA which I had never heard of before, but after reading about it I am now wondering.

http://www.mitoaction.org/files/AlyssaDavi.pdf

[3boysmom]

All three of our children have elevated A and B Coxsackie's titers. We have been treating viruses for the last couple of years with a rotation of herbal anti-viral's and older DS's Coxsackies titers are finally 1:200 and all other viruses are sub negative. We used Virograhphis, Andrographis, A-C by Byron White 'Specifically Formulate for Coxsackie's', Engystol, Olive Leaf Extract 2,000 m.g., to name a few. We rotated the herbals about every 12 weeks. We did notice viral outbreaks and an increase in overall symptoms from die-off/herx response when treating. Overall symptoms increased within 48 to 72 hours with mouth sores appearing between 3 and 6 weeks after starting new anti-viral. Prior to treating we had absolutely no physical or visible sign of chronic virus.

 

One thing I have learned is viruses love to bind to heavy metals like mercury and lead. I would highly recommend testing for heavy metals if you are dealing with high titers and more than one virus. Our children also showed high titers for two more viruses. All of our children have elevated lead and mercury. Heavy metals are easy to collect especially with an immune compromised child and especially if you have mercury fillings or eat a lot of fish. My children have no fillings and rarely eat fish. Our Dr. felt there was an environmental source due to the fact all of them tested similarly so we tested our home drinking water and it came back positive for high chlorine, lead and hint of pesticides. We now have a more extensive filtering system that will address heavy metals as our Britta was not doing the job. These metals can be in bottle water, school water, etc. It only cost $24.00 to test our water and a couple hundred to add filtering system to kitchen sink and showers. However, chelation will take at least another year of treatment but apparently lead is the easiest to draw out. We did heavy metals testing through Dr. DATA Lab and our Dr.

 

Heavy metals will really drag on your body and cause continued issues impacting the gut, depletion in vitamins/minerals and allows yeast to proliferate. Norcalmom just posted extensive information on heavy metals/mercury. It is interesting how mercury binds mostly to sulphur. Our kinds were dealing with Oxidative Stress and made huge advancements when we added larger amounts of natural sulphur to their daily supplement list. I

t is encouraged to have a sulphur rich diet if you are suffering from heavy metals especially mercury.

 

Anyway, I've probably overwhelmed you..... Two main take aways from our experience: viruses can take for ever to see titers drop and at some point if viral titers are unrelenting check for heavy metals.

wow, you've done a lot! Dr. T wants us to get mitochondrial DNA testing.....beginning to wonder

 

http://www.mitoaction.org/files/AlyssaDavi.pdf

[sf_mom]

I am not sure how much you know of our history but we have 3 children. Older DS was originally diagnosed with PANDAS and treated with success/improvement for one year. At approximately, one year mark we started testing for additional issues due rectal bleeding and few minor PANDAS symptoms..... This is when we discovered chronic infections of Lyme, Bartonella, Babesia, 3 viruses including 'Coxsackies', etc. Our younger twins who were 2 1/2 at the time had many autism traits but not full blown PANDAS trigger by strep. One twin had OCD and rage behavior and one twin had language regression, etc.. Anyway, we eventually discovered our entire family has Lyme Disease et al and our children were born with it.

 

To make a long story short we work with two LLMDs and biomedical autism specialist..... All our children are being treated for mitochondria damage as well. We tested for it through our Pediatrician as she felt all three children had issues specifically related. I remember her mentioning our older son's tendency to fall over a lot when he was younger and just beginning to walk. It is hard for us to determine if it was the chronic infections since birth that caused the cascade and loading up of viruses/bacterias/metals or a genetic predisposition that caused these issues. The thing that makes me think it is the chronic infection verse predisposition is my children are not fully biologically related to me but were carried in-utero due to the use of donor egg. Our older son is a full biological child while our twins are not.

 

Regardless, all our children are doing well and do not suffer from OCD/TICS and continue on the path of recovery. Its been a 3 1/2 year process for older DS. Today actually marks his last hdIVIG treatment for PANDAS with Dr. K in Chicago three years ago. Our list of supplements is long and most of them are listed in the article you linked. For us moving beyond PANDAS diagnoses was the key to all of our children's wellness. It has been exhausting but often DH and I remind ourselves its been worth it, they have come a long, long way and believe they will be fine. I swear we are done testing but we haven't "fully" investigated the possibility of mold yet. I encourage you to keep investigating these issues for your children.

Edited January 19, 2013 by SF Mom

[3boysmom]

I am not sure how much you know of our history but we have 3 children. Older DS was originally diagnosed with PANDAS and treated with success/improvement for one year. At approximately, one year mark we started testing for additional issues due rectal bleeding and few minor PANDAS symptoms..... This is when we discovered chronic infections of Lyme, Bartonella, Babesia, 3 viruses including 'Coxsackies', etc. Our younger twins who were 2 1/2 at the time had many autism traits but not full blown PANDAS trigger by strep. One twin had OCD and rage behavior and one twin had language regression, etc.. Anyway,

we eventually discovered our entire family has Lyme Disease et al and our children were born with it.

 

To make a long story short we work with two LLMDs and biomedical autism specialist..... All our children are being treated for mitochondria damage as well. We tested for it through our Pediatrician as she felt all three children had issues specifically related. I remember her mentioning our older son's tendency to fall over a lot when he was younger and just beginning to walk. It is hard for us to determine if it was the chronic infections since birth that caused the cascade and loading up of viruses/bacterias/metals or a genetic predisposition that caused these issues. The thing that makes me think it is the chronic infection verse predisposition is my children are not fully biologically related to me but were carried in-utero due to the use of donor egg. Our older son is a full biological child while our twins are not.

 

Regardless, all our children are doing well and do not suffer from OCD/TICS and continue on the path of recovery. Its been a 3 1/2 year process for older DS. Today actually marks his last hdIVIG treatment for PANDAS with Dr. K in Chicago three years ago. Our list of supplements is long and most of them are listed in the article you linked. For us moving beyond PANDAS diagnoses was the key to all of our children's wellness. It has been exhausting but often DH and I remind ourselves its been worth it, they have come a long, long way and believe they will be fine. I swear we are done testing but we haven't "fully" investigated the possibility of mold yet. I encourage you to keep investigating these issues for your children.

 

thank you so much for your reply. Is mitochondrial a scary diagnosis? Not sure what to think. Yes, I have followed your posts because you have been around about the same length of time as me and we too have 3 PANDAS kids. Oldest one still struggling with any infection. I really understand the importance of the name change to PANS now.... It is so important that if strep isn't the culprit, then something else may be! I may PM you for advice if the mitochondrial DNA is positive. Is that ok?

 

Thanks,

Linda

[3boysmom]

I am not sure how much you know of our history but we have 3 children. Older DS was originally diagnosed with PANDAS and treated with success/improvement for one year. At approximately, one year mark we started testing for additional issues due rectal bleeding and few minor PANDAS symptoms..... This is when we discovered chronic infections of Lyme, Bartonella, Babesia, 3 viruses including 'Coxsackies', etc. Our younger twins who were 2 1/2 at the time had many autism traits but not full blown PANDAS trigger by strep. One twin had OCD and rage behavior and one twin had language regression, etc.. Anyway,

we eventually discovered our entire family has Lyme Disease et al and our children were born with it.

 

To make a long story short we work with two LLMDs and biomedical autism specialist..... All our children are being treated for mitochondria damage as well. We tested for it through our Pediatrician as she felt all three children had issues specifically related. I remember her mentioning our older son's tendency to fall over a lot when he was younger and just beginning to walk. It is hard for us to determine if it was the chronic infections since birth that caused the cascade and loading up of viruses/bacterias/metals or a genetic predisposition that caused these issues. The thing that makes me think it is the chronic infection verse predisposition is my children are not fully biologically related to me but were carried in-utero due to the use of donor egg. Our older son is a full biological child while our twins are not.

 

Regardless, all our children are doing well and do not suffer from OCD/TICS and continue on the path of recovery. Its been a 3 1/2 year process for older DS. Today actually marks his last hdIVIG treatment for PANDAS with Dr. K in Chicago three years ago. Our list of supplements is long and most of them are listed in the article you linked. For us moving beyond PANDAS diagnoses was the key to all of our children's wellness. It has been exhausting but often DH and I remind ourselves its been worth it, they have come a long, long way and believe they will be fine. I swear we are done testing but we haven't "fully" investigated the possibility of mold yet. I encourage you to keep investigating these issues for your children.

 

thank you so much for your reply. Is mitochondrial a scary diagnosis? Not sure what to think. Yes, I have followed your posts because you have been around about the same length of time as me and we too have 3 PANDAS kids. Oldest one still struggling with any infection. I really understand the importance of the name change to PANS now.... It is so important that if strep isn't the culprit, then something else may be! I may PM you for advice if the mitochondrial DNA is positive. Is that ok?

 

Thanks,

Linda

 

SF mom

[sf_mom]

Linda

 

Dealing with mitochondrial damage is not scary at all... Its just a matter of treating and correcting deficiencies. Researched Nutritionals makes a product called NT Factor which is specifically formulated to address damage that includes: E, NT Factor, MSM, Kreb Cycle Glucose and RN Fatty Acid Metaboilzer. We supplement on top of that with C, D-Ribose, D and additional MSM.

 

I will add treating mitochoncrial damage helps but it was not the full solution to recovery. We really had to treat each additional issue.... viruses, chronic infections, gut issues, etc. The supplementation helps to fight existing issues.

 

Any good integrative Dr. or DAN should understand fully how to treat. In answer to your other post... We absolutely saw an increase in TICS when treating viruses within 48 to 72 hours of treating that eventually settled. Anti-virals will help tremendously but it needs to be addressed long term and along side all issues like chronic infections, vitamin/mineral deficiencies, detox. We 'ALL' want the solution to be easy but in all my experience it wasn't.... it was multiple issues and why we see more than one Dr.

 

You are always welcome to PM me with any questions.

[3boysmom]

Linda

 

Dealing with mitochondrial damage is not scary at all... Its just a matter of treating and correcting deficiencies. Researched Nutritionals makes a product called NT Factor which is specifically formulated to address damage that includes: E, NT Factor, MSM, Kreb Cycle Glucose and RN Fatty Acid Metaboilzer. We supplement on top of that with C, D-Ribose, D and additional MSM.

 

I will add treating mitochoncrial damage helps but it was not the full solution to recovery. We really had to treat each additional issue.... viruses, chronic infections, gut issues, etc. The supplementation helps to fight existing issues.

 

Any good integrative Dr. or DAN should understand fully how to treat. In answer to your other post... We absolutely saw an increase in TICS when treating viruses within 48 to 72 hours of treating that eventually settled. Anti-virals will help tremendously but it needs to be addressed long term and along side all issues like chronic infections, vitamin/mineral deficiencies, detox. We 'ALL' want the solution to be easy but in all my experience it wasn't.... it was multiple issues and why we see more than one Dr.

 

You are always welcome to PM me with any questions.

 

thank you! I'm overwhelmed, but I know that I can do this! If I have learned anything in these last 3 years it is that I am a lot stronger, smarter, and determined than I ever knew I was! So I guess I'll take a deep breath and go in for another round! Wish us luck and THANK YOU!

Linda

[cobbiemommy]

We are on day 5 of a ten day dose of Valtrex. We started him on Thyroid meds the same day. He does seem to have more energy, but that is the only bump we have had so far. Hope it works.

[L93bent]

I am new to this forum looking for help with our 9 year old who is showing signs of pans with hive and a constant coxsackie positive result. We are in Upstate N.Y. do you have a recommendation of Dr's who will look into it?