Lyme, Bartonella, Babeosis, PANS Diagnosis and Questions

[MountainMom]

Yesterday, after three years of struggles and misdiagnosis we finally got our test results back and met with our doctor. My DS(7) is positive for Lyme, Bartonella, Babeosa and received a diagnosis of PANS.  I am hopeful, because my son will finally receive the treatment and support that we desperately need. I have a couple of question that I'm hoping those of you with experience with these diagnosis can answer. 

First, my doctor is treating DS with Zithromax and another antibiotic (can't remember the name offhand). Does this make sense? DS is not currently in a flare, though of course, he is symptomatic.... 

Second, if your child had tic borne illnesses, once you treated those infections, did PANS flares continue? I'm terrified of what the next flare might bring.

Thanks so much for any insights.

[bobh]

Zith is a good first start for PANS in general, and I see (from googling) that it is used for lyme as well.  So yes, it does make sense.

There are some that argue zith needs to be in conjunction with other meds.  The main thing is to make sure your doctor believes the positive results (and isn't just humoring you).  Chronic lyme is so plagued by unbelieving doctors, it is quite a "political mess".

I am afraid that flares continue, probably because the child's immune system isn't working right, and the next thing that comes along (strep, mycoplasma, whatever) will tend to throw him into a flare.  Sorry for that bad news.

[NYCMom]

Yes we found that the antibiotics helped with daily symptoms as well as flares.

Our DS contracted Lyme (we figured it out because of a flare) and was successfully treated (we hope). He still flares occassionally and we've stopped trying to figure out the sources. There are just too many and the info wouldn't really make a difference in our approach unless there was an active infection to tackle. Instead we double down on probiotics and lecture about clean eating.

[MountainMom]

Bobh, thank you. We are very lucky to have an (excellent so far) llmd. I guess it was mostly wishful thinking, that treating the infections would illiminate the PANS. The other medication they've put him on is malarone.

NYCMom, how did you know when the Lyme and co infections were gone? It seems impossible to know.... How do you know if there are other infections going on post treatment. I'm just having trouble understanding how we will know if these infections are gone.

Thank you.

Edited September 14, 2017 by MountainMom

[jep1978]

Hello MtnMom, 

Can you please explain how they were able to determine that it was PANS in addition to the Lyme (rather than just Lyme) Was it a test, or specific behaviors that made PANS part of the diagnosis? I am going through something similar with my kids. Thanks!

[MountainMom]

Hi jep1978. That's an excellent question. I was just going to post that question under a new topic- and I'm really interested in other people's experiences in this. I should have asked our doctor when I was there- but I was too overwhelmed. I think the reason is because his symptoms were classic PANS- OCD, anxiety, tics, etc. But I'm not poitive. We didn't do the Cunningham Pannel. I'm going to ask her in an email. I'll let you know what she says.

[MountainMom]

jep1978,

I came across this article that might be helpful. In particular, this table might be of interest:

LD:PANDAS.htm

Though, I think some people might disagree with some of the symptoms that it says are not present in PANDAS.

 

[jep1978]

Wonderful, thanks so much. And please check out my question that I posted about 1 day ago where I ask about the difference between Lyme/PANS/Bart etc. 

Curious if your symptoms match with my child's.

[MountainMom]

jep1978,

I sent you a pm.

[bobh]

22 hours ago, MountainMom said:

jep1978,

I came across this article that might be helpful. In particular, this table might be of interest:

LD:PANDAS.htm

Though, I think some people might disagree with some of the symptoms that it says are not present in PANDAS.

 

Interesting. The statement in the paper that Lyme and PANDAS are "mutually exclusive disease states" is technically correct for the initiating cause only, but I don't think that a strict separation based on that alone is especially helpful for the long haul in dealing with the disorders.  There is much more to be gained by understanding them as similar.

There are splitters and there are lumpers.  The authors of this article seem like splitters (they want to delineate between two diseases).  I guess, on this one, I must be a lumper (i.e. I think it is useful to group these two diseases together), because I think the long-term autoimmune component of both disorders is much more important to emphasize, than the difference of the initial causing bacteria.  What we struggle with is the later stages of the disease, the initial spark is only significant for prescribing the correct first set of antibiotics. There are many more prescriptions to follow!  Support for lyme as an autoimmune disorder can be found here: https://www.ncbi.nlm.nih.gov/pubmed/15214872 .

PANDAS is a subset of PANS, and PANS symptoms can be caused by many pathogens and irritants, B. burgdorferi included.  I tend to believe that untreated PANDAS often morphs into PANS - and so it eventually becomes more similar to lyme than it is different.  I don't know as much about lyme, but with symptoms so similar (per the table), some similar mechanisms are probably involved.