Most Recent Visit to LLMD

[sf_mom]

It was a long and exhausting visit with our LLMD this morning with all three kids. I thought I'd update on our situation hoping it might help others.

 

As you may remember, we were able to get positive DNA results for my older DS that was previously diagnosed with PANDAS. So, we know the Lyme is there... however, he is not positive for LYME or any co-infection via any antibody tests. The reason being is its congenital Lyme and his body does not recognize the bacteria as foreign and therefore does not make antibodies.

 

Our 3 year old daughter is similar and negative for all tests except elevated CaM kinase and a deteriorating immune system. She has clinical symptoms and our Dr. believe her Livedo Reticularis a result of Bartonella. She had some spectrum disorder issues that are starting to resolve and we remain very hopeful for her full recovery.

 

Our 3 year old son MAKES ANTIBODIES!!!! He is positive for Bartonella and Babesia.... and currently negative for LYME but the Dr. feels/knows it is there. I was not expecting him to be co-infected but at least he is making antibodies and we are starting to get answers to the underlying issues. We will be treating him fairly aggressively in hopes this will be behind him by the time he enters school at 4 1/2 years of age. We will also be starting him on a third antibiotic this week. We are very prepared for things to get much worse due to herxing. Dr. has warned us and we will be seeing him every six weeks as treatment proceeds.

 

2 of 3 children have severe milk and egg allergies which is common in children with Lyme. We are using Ketotifen, a histamine reducer for our older DS to help repair leaky gut syndrome. We are also giving them numerous other herbs and supplements for their designated infections.

 

Our Dr. does expect our children's deficiencies in their IgG subclasses and strep pneumo titers to turn around. We do not anticipate doing IVIG treatments for our younger twins at this time.

[Suzan]

Great information thank you and I am so glad you are getting answers and results!

 

Do you (or your LLMD) feel that the food allergies will turn around when the lyme is addressed? We have Dairy and Gluten issues here and a few others.

 

Susan

[sf_mom]

Yes he does believe it will turn around fairly rapidly. The histamine reducer our older son is on helps to lower levels and to rebuild intestinal mucus lining. We are also giving him IgG powder to repair leaky gut and have better absorption. He thinks in a couple months we can reintroduce dairy to see if it has a negative effect again. Both of our son's have/had distended belly's due to allergies.

 

Our DD's good bacteria levels were fairly decent... so, he was pleased with her gut issues. Remember we are doing mega dose probiotics and apparently its doing her some good.

Edited October 27, 2010 by SF Mom

[momofgirls]

Wendy

You can count on our continuous support throughout this journey. I KNOW there is an end. Wishing you and your family good health!

Kim

It was a long and exhausting visit with our LLMD this morning with all three kids. I thought I'd update on our situation hoping it might help others.

 

As you may remember, we were able to get positive DNA results for my older DS that was previously diagnosed with PANDAS. So, we know the Lyme is there... however, he is not positive for LYME or any co-infection via any antibody tests. The reason being is its congenital Lyme and his body does not recognize the bacteria as foreign and therefore does not make antibodies.

 

Our 3 year old daughter is similar and negative for all tests except elevated CaM kinase and a deteriorating immune system. She has clinical symptoms and our Dr. believe her Livedo Reticularis a result of Bartonella. She had some spectrum disorder issues that are starting to resolve and we remain very hopeful for her full recovery.

 

Our 3 year old son MAKES ANTIBODIES!!!! He is positive for Bartonella and Babesia.... and currently negative for LYME but the Dr. feels/knows it is there. I was not expecting him to be co-infected but at least he is making antibodies and we are starting to get answers to the underlying issues. We will be treating him fairly aggressively in hopes this will be behind him by the time he enters school at 4 1/2 years of age. We will also be starting him on a third antibiotic this week. We are very prepared for things to get much worse due to herxing. Dr. has warned us and we will be seeing him every six weeks as treatment proceeds.

 

2 of 3 children have severe milk and egg allergies which is common in children with Lyme. We are using Ketotifen, a histamine reducer for our older DS to help repair leaky gut syndrome. We are also giving them numerous other herbs and supplements for their designated infections.

 

Our Dr. does expect our children's deficiencies in their IgG subclasses and strep pneumo titers to turn around. We do not anticipate doing IVIG treatments for our younger twins at this time.

[sf_mom]

Let's hope the end is sooner rather then later for all our kids!!!! I'm exhausted... as you know.

[sptcmom]

Hi Wendy

Always here for you. Your advise has been invaluable for us and our support and anything else you might need is always yours, no question about it. I think you're absolutely amazing as a mom and as a human being. I pray that you and your family will get thru this with flying colors and minimal distress.

Thankyou for posting. I should do more of that.

Regards

Jodie

[NancyD]

Ditto. Wendy, your advice and support has been invaluable to so many familes. If it weren't for you I would not know that my daughter had Lyme disease! We are here for you as you are for us! I cannot imagine having 3 young children with LD plus having it yourself.

 

Sending you a hug!

Nancy

[justinekno]

I'm glad to hear you had a positive visit. We have just started doing the IgG powder. Do you feel it's been helpful?

 

We are also giving him IgG powder to repair leaky gut and have better absorption.

[philamom]

SF MOM- I agree with the others on how invaluable your advice has been. Thank you from the bottom of my heart! As always, wishing the best for your family!!! Melinda

[sf_mom]

Thanks guys for your support.... I never expected our youngest son to be tri-infected. BUT, I guess it is better to know now than later. We've seen rages again since starting the Alinia with him and I can only imagine what is to come over the next couple of weeks. All his symptoms make sense now.

 

AND, just so everyone knows..... I will be forever grateful for Pacific Mom and Lyme Mom posting to this forum. Their prompting got Elizabeth to test her children. AND, of course Elizabeth's urging off forum to test, test, test when the hdIVIGs weren't successful. You know, I didn't think the Lyme issues applied to our family. WE HAD A CLASSIC sudden on-set of PANDAS symptoms and our son was doing well with treatment. It took me almost 7 months to test my older son. I even celebrated their negative results off forum with some of you. Thankfully... I kept that LLMD appointment. I guess ultimately something kept nagging at me to keep investigating due to my symptoms, my husband's raised titers and our older son's remaining issues at the time. etc. What a journey. AND what a journey we have in front of us.

 

I had a very interesting conversation about the topic with Dr. H yesterday and he openly discussed politics of Lyme and the resistance of some that become invested in diagnoses. He even emphasized the importance of parental involvement in changing perspective. He is also worried about the unsuspecting parents to come... LIKE OUR family who are serologically negative with initial testing for LYME.

 

For those parents with ASD issues our Dr. is helping many. As he put it, they've got messed up immune systems!!!! I understand he is treating a ASD child that is non-verbal, deaf right now and the jury is out as to if they will be able to fully reverse course... He is hopeful that my older son's deteriorating eye sight will reverse course. I'll keep you posted.

 

I think we should have a party when all our kids are well.

 

-Wendy

Edited October 27, 2010 by SF Mom

[PacificMama]

Hi Wendy,

 

I always enjoy your updates. It's so good to see someone identify (mostly!) what is at the root of their chilren's health dysfunction. But what a tangled web these infections weave ... and it leads to you finding answers about your own health. So from that standpoint it is a blessing too. You are under the care of a wonderful doctor, and so I am confident that you will all regain your health.

 

I also really enjoy hearing about the perspective of Dr. H too. So keep posting!

 

Mary

[lss]

Yes he does believe it will turn around fairly rapidly. The histamine reducer our older son is on helps to lower levels and to rebuild intestinal mucus lining. We are also giving him IgG powder to repair leaky gut and have better absorption. He thinks in a couple months we can reintroduce dairy to see if it has a negative effect again. Both of our son's have/had distended belly's due to allergies.

 

Our DD's good bacteria levels were fairly decent... so, he was pleased with her gut issues. Remember we are doing mega dose probiotics and apparently its doing her some good.

 

 

Wendy,

 

Can you tell me what brand or name the IgG powder is?

 

Linda

[justinekno]

Our LLMD was telling a story of a child he is treataing who was diagnosed with ASD, non-verbal, and now that he is being treated for Lyme, he is making some progress. He said hard to know if it's all Lyme but there's definitely reason to feel optimistic. Interesting stuff.

 

For those parents with ASD issues our Dr. is helping many. As he put it, they've got messed up immune systems!!!! I understand he is treating a ASD child that is non-verbal, deaf right now and the jury is out as to if they will be able to fully reverse course... He is hopeful that my older son's deteriorating eye sight will reverse course. I'll keep you posted.

 

-Wendy

[sf_mom]

I feel its been tremendously helpful and Dr. H has had great response using it as well. XYMOGEN IgG 2000 DF powder. I've also read a lot about getting the histamine levels down in individuals with Lyme. The Ketotinfen has helped.... in addition to the powder. Some LLMD in book Insight To Lyme recommend Benadryl which we've just started using with the twins nightly.

[sf_mom]

Its amazing... Our father-in-law is a Dr. says there is no way to reverse vision loss. I was shocked that our LLMD feels so differently. He even talked about the Alinia (antibiotic) being able to penetrate the pupil.