Suspect congenital lyme

[momcap]

I suspect my DS7(PANDAS) may have congenital lyme. I remember a lyme mom posting that congenital lyme won't show up on blot tests because the body won't make antibodies to something it doesn't think is foreign. Is this true? Is there any point in paying for Igenex? He has a negative western blot, which I know doesn't mean anything. Not sure what to do next.

 

Does this sound like lyme/congential lyme: When I was 14 I was very sick for over a year. I caught one thing after another and just couldn't get well. I never found out why/what made me so sick. I had ample opportunity to be exposed to lyme, as I practically lived outside, running around the bush, often barefoot and horseback (yikes!). After I got "well" I had chronic pain and my mom took me to every doctor out there. Nothing significant was found (one slightly compacted vertibra and elevated levels for JRA, but not high enough to diagnose). After years in pain I became depressed. Antidepressant made me manic and I was diagnosed bipolar and drugged. In my early 20s I dropped the drugs and realized I was well - physically and mentally. I have occassional pain flare-ups that are scary, but only last a few days at worst. I can go months, sometimes over a year without any symptoms at all. Now my DS7 is going through the same pattern - a few years ago he was constantly sick. Then the psych stuff - ADHD, ODD, OCD, mood disorder, selective mutism, and more. Along with that he's been in signficant pain for 4 years - mostly joints, sometimes muscular. He lost his smell for a year and then it came back on over-drive so that every smell overwhelmed him. He has a sensory processing disorder that is debilitating. He definitely has PANDAS - elevated strep titers with exacerbations, CamK 178. He's been on one antibiotic after another since the end of August. We initially saw amazing results (personality transplant!), but everything came crashing back whenever the antibiotics ended. Twice he got infections while on antibiotics! Now he's on Augmentin, and herxing? He is strikingly improved. His principal and teacher both called me today to say how amazing the difference is. He is reading again. He is doing assignments. He is happy and relaxed. (2 weeks ago he was throwing chairs and ripping up assignments.) BUT, he is in pain again for the first time in 2 months. Tonight his face is red except around his mouth which is pale. He says the medicine is making him feel "coo coo". He says his tummy and arms are "fuzzy". I'm scared.

 

I know I'm on a lyme forum so of course everyone here is going to say this sounds like lyme. Is it worth doing Igenex if I think this is congenital? AND, does anyone know any LLMDs in Ontario, or anywhere else in Canada? Thanks!

[Suzan]

Hi, My dd's have lyme and I suspect it's congenital lyme. It's true that it's possible that they would not produce antibodies but it is possible to produce them too. My dd8 was positive by Igenex standards and dd9 was negative although she had one positive two lyme specific IND bands.

 

Also, your story does sound like lyme to me (and yes I think everyone has lyme now ). But when I tell my history, I sound less like lyme than what you have indicated in your past. My lyme has become active and I am really suffering now. We don't know when I got it but I suspect I had it since I was a kid (known tick bites) but of course it could have been any time.

 

Susan

[PacificMama]

Momcap,

 

Yes, all the things you describe, for both yourself and your son, fall in the realm of lyme symptoms. However, the only one who could really say is an experienced lyme doctor. I think you are seeing that your son reacts positively to abx, so that is a clue for you that you are dealing with some type of infectious agent. As to the cunningham test, high camk can be present in a number of infections, not just strep. But you are saying that he has high titers too. So yes, he may have a strep problem. However, that does not discount the idea that there may be another chronic infection (like lyme) at the root of his problems.

 

Have you checked out www.canlyme.com yet? Also, see their symptom list. Maybe you can get canadian doctor referral from them.

But also, see the "helpful links" folder above, and see the posting for finding an llmd. Try all the options listed. What state are you closest driving distance to?

 

See also the "helpful links" folder for the article "evaluating a child for tick borne diseases", and see what you think.

 

best of luck.

Mary

[butterflymom]

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Edited February 2, 2016 by tampicc

[momcap]

Hello, I wanted you to know that the scarlet fever rash can present as red on the face, with a clear white area around the mouth.

 

Scarlet fever never occurred to me. My other 2 boys had it in January and they were bright red from their heads to their feet. I've never seen a rash like that! DS7's red face went away, but now his throat hurts and he's saying he thinks he has strep again. Geez! He also had a stomach ache this weekend, but I thought that was from the Augmentin. This morning he's lost all gains. Back to being berserk.

 

I'm going to bite the bullet and send blood to Igenex too. It's so hard to know what's going on and what to do.

[momcap]

 

Have you checked out www.canlyme.com yet? Also, see their symptom list. Maybe you can get canadian doctor referral from them.

 

Yes, I have looked at CamLyme. I am sending them an email asking about Lyme docs in Canada. If I find any I will share that info here.