Positive for Lyme!

[adkmom]

So, we have a positive for Lyme disease! Dr. B was "shocked" with the results, since my DS4 responded so positively to steroid taper. (His tic decreased substantially) and I guess typically with Lyme, a steroid will make a tic worse? if I've got that correct.

Anyways, it explains why he has daily fatigue and is still fairly aggressive. So switching to Zithro. from Omnicef. But I'm now at a total loss with Lyme. I still don't have my understanding of PANDAS and now have to figure out the whole Lyme Disease issue.

Any help? How do you know if your child actually has PANDAS, and not just Lyme? Would they not have any OCD and PANDAS specific symptoms? What should I expect with treatment? Do most go to Lyme specialists? I don't know how long he's had the Lyme, how does that impact treatment?

 

Any input would be helpful.

 

adkmom

 

PS - We had 1 GLORIOUS day and then slipped back to the moody, irritable aggressive patterns.

[Fixit]

I don't have any answers, but glad you found out and can start the healing process!

[sf_mom]

Our older son presented mostly with TICS, also responded to steroid burst, PANDAS treatment (3 hdIVIGs) and was diagnosed with LD in August 2010. The comb'd antibiotics 'Lyme Protocol' have been very helpful to our son's recovery.

 

The main difference between PANDAS, PITANDS, Lyme: PANDAS is viewed as auto-immune in absence of infection kicked off by strep, PITANDS is thought to be similar to PANDAS but kicked off by viruses or other, Lyme/MCIS 'multiple chronic infection syndrome' is viewed as chronic infection, auto-immunity takes place due to wide spread infection, once infection is eradicated auto-immunity stops 'theoretically'. Lyme can be triggered or flairs when the body is under the stress of viruses, additional bacteria's, parasite, molds, vaccinations, etc.

 

I would highly recommend seeing an LLMD as you'll have to unravel potential co-infections. Statistics are that 80% of all individuals with LD have a co-infection and 60% will have multiple infections. For example, I have LD, Mycoplasma, potentially 'Babesia and Bartonella' plus I'm positive for three viruses.

 

You'll figure this all out. Good luck and please come join us on the Lyme forum.

 

- Wendy

Edited January 20, 2011 by SF Mom

[JAG10]

Hi

 

I hope these questions aren't too personal. Do you recall your son being bit by a tick or do you think he got Lyme from you or neither? Was his Western Blot positive or one of the co-infections?

 

Hold on to the memory of his glorious good day because that is who God intended for him to be. I think those days are gifts from heaven that tell us what is possible and to keep pushing forward to get our children well.

 

Jill

[LNN]

My son always responded extremely well to prednisone tapers, which is why I dismissed lyme for a long time. When he was eventually diagnosed with lyme/bartonella, I asked the LLMD how we could've seen such a positive response. His explanation was that if you feel awful, prednisone will bring you relief and make you feel good - temporarily. (in our case, for about 2 months before something would start to slip - but I always assumed it was due to an exposure - never thought it could be lyme)

 

My personal theory is that one or both of these disease caused an autoimmune response that the prednisone halted. But you can tie yourself up in knots trying to decide the chicken/egg questions of if lyme, when, with or without Pandas... I think you can have both - a chronic infection, along with periodic strep infections, an overwhelmed immune system that tips into autoimmunity. But it's speculation on my part.

 

What you do know is that you have xyz symptoms and one, probably two diseases, causing them. The good news is that a combo of antibiotics is a good way to treat both conditions. My personal experience is that our LLMD has been able to change DS's abx into a combo that has been really really effective and he has experience managing the body's detox process to minimize herxes and side effects. So in that regard, my son has benefitted with an LLMD. Get rid of the lyme and see what you have left. If any Pandas vulnerability remains, go back to the Pandas doctors (don't burn bridges in the process - I don't mean to discount what they bring to the puzzle - just that I'd go to the expert for lyme and then the expert for Pandas).

 

Have hope. You have key puzzle pieces now. Lyme treatment for us has not been difficult - nothing compared to what we've been through beforehand.

[momofgirls]

We responded well to steroids too. I still think it helps to control auto-immunity/inflamation. Just not so good for the underlying infection. I think these kids have the same disease just different infections. If I were you I would keep the omnicef and add the zyth to it! Its been a good combo for us. My daughter is being treated for lyme and bartonella. Maybe talk to Dr. B about that, he is pretty flexible. Then go see a lyme doctor.

Be glad you know, I know its overwhelming but the more we know the better chances our kids have at recovery.

Kim

Edited January 20, 2011 by momofgirls