Lyme and Ehrlichiosis - Neuropsychiatric presentation only?

[SEAMom]

Hey has anyone's child been diagnosed with Lyme and/or Ehrlichiosis and only had neuropsychiatric symptoms only? My DS tested positive for Ehrlichiosis and we are waiting for a second test for Lyme as the first one was inconclusive.

 

My DS has PANDAS for sure but his recovery has been slow and does not seem to stick. He had his 3rd IVIG at the beginning of December and he made about a 95% recovery that lasted about 28 days and now he is about down to 25%.

 

He never had a known tick bite or rash. However he did have exposure to tick areas and outdoor activities and he did have really weird memory, auditory processing delay and vertigo after a camping trip in Montana. I blamed the symptoms on a fall the week before he left. We thought he had a concussion that we missed. But looking back at it now it so easily could have been something else...

 

He has never had joint pain or muscle aches.

 

What about false positives on these tests too? IGenix said that my DS just had to have 2 weeks since his last IVIG before the blood draw - we had one month in between. What is the chance that he received Lyme and Ehrlichiosis antibodies from the IVIG? What is weird is that he only tested positive for IgM (current infection) for Ehrlichiosis (HME) and negative for IgG. He should have some IgG (past infection antibodies) because he has not been outside at all the past 10 months since he got sick. The first possible tick exposure was 14 months ago.

This maybe just a wild goose chase!

 

Would love to hear some of your wisdom on the subject.

[rowingmom]

Please make sure he is also tested for the other coinfections (babesia, bartonella, mycoplasma etc.), bartonella especially if he is having neuropsychiatric symptoms, babesia because of the vertigo. These are stand alone infections; lyme infection is not a prerequisite.

 

Psychoimmunology of Tick borne Diseases and its Association with Neuropsychiatric Symptoms:

 

https://www.youtube.com/watch?v=7kG7BHlByeQ

[SEAMom]

he has been tested for the other co-infections and they all came back negative. Thanks for the video link! I will check it out.

[DsMom]

I replied to your LLMD in Seattle post, but I did want to comment that my DS has had primarily Neuro symptoms exclusively until he began Lyme/ co-infection treatments...

[nicklemama]

My son has ehrlichia. He first tested positive almost three years ago. His PANS symptoms(neuropsychiatric) were the only symptoms of it and lyme, outside of the fact that he was fatigued and the bottoms of his feet hurt (bartonella). It has been very difficult to rid him of it. He still has high titers to ehrlichia that stay elevated and go up and down but never back to normal. We are still working to rid him of it. That said, he is doing very well now. We treated him for lyme, although he was CDC/Igenex negative but he had many indeterminate, lyme specific bands and a couple of positive lyme specific bands. He has also been treated for bartonella, though he only had symptoms, no positive tests. Bartonella testing is not very accurate. He has an IgA deficiency that makes it difficult for him to kick infections.

 

My son has had IVIG twice. I doubt the IVIG was the source. Besides being symptomatic before the IVIG, which is the reason he had IVIG, the filters that remove the Ig would separate out bacteria from the blood as well, since Ig is smaller than bacteria. Ig is made by running blood through filters to sort out the Ig. Viruses are smaller than Ig, so they may ride along with the Ig.

[SEAMom]

Thanks for the info on the IVIG - that makes more sense to me now.

I was reading some previous posts about lyme and I am starting to put the pieces together. The ND and me always clung onto the PANDAS diagnosis because my ds older sister kept getting strep and my ds kept flaring every time she did. His first onset was two weeks after my dd had strep the first time but it was also 4 days after my ds had his 2nd HPV vaccination. I called it the perfect storm. But he never had very elevated titers. The ND and I think the Lyme and the ehrlichia were dormant up until this point and then all broke loose.

 

It makes sense why the IVIG won't stick. What treatment did you use that has been successful for ehrlichia and lyme? Did you do the plasmapheresis before the lyme diagnosis or after?

[SEAMom]

Nickelmama - disregard my question about the plasmapheresis - not enough coffee this morning and I got my messages mixed up.

[bws1565]

HPV for a boy?

 

My daughters Lyme/bart symptoms were primarily neuropsychiatric also, except fatigue and headaches. She developed nerve pain and other strange symptoms when we started treating.

[SEAMom]

Oh yes HPV for a boy. It is recommended for all boys now because the boys carry the HP virus. If the boys are not carrying it the girls won't catch it.

 

My bottom line is to steer clear of that vaccination and teach your daughter's to get their regular PAP's and they should not get HPV or cervical cancer. I would have never given any of my children the HPV with what I learned about it after it was done and too late. It is not medically necessary nor required.

[nicklemama]

My son's lyme and coinfections were dormant too, until FluMist. The most significant treatment that was a game changer was adding a second antibiotic and treating for his lyme and coinfections. We messed around treating PANDAS, even though he never had strep, for far too long and it just didn't work. Augmentin and IVIG just didn't do the trick. My son has never had a known tick bite, although we have camped many times in lyme endemic areas of our state, where in a few counties, upwards of 80% of ticks tested are carrying lyme. Lyme was not on my radar then.

[Mary wag]

Us too Nicklemama. When my daughter was in second grade the doctors talked me into the FluMist Got very sick with fever for a few days after. Then all the fears and phobias sadness anger rage all came out. Then that some of the intrusive thoughts started. Think those were the worst for her . That summer we discovered Lyme.

She is now in six grade and after 3 years of treatment is doing very well.