Pans or Lyme-how do we know?

[LindaMW]

I have just been thinking with all the symptoms my son has, how do we know if it is really all the lyme or does he still have Pans? Initally it started suddenly with a strep infection, classic pandas but we now think he had already been exposed to lyme two months prior to that.

 

With all the symptoms of neuro-lyme being so similar to pandas/pans, how do we know? When and if we ever get the lyme gone from his body, will we be able to see how he responds when he gets sick again? I have noticed since we have been treating the lyme, he has had two colds and I did not see that change in behavior like I did before we started treatment. That was kind of what got me thinking about this. Has it been the lyme the whole time? My brain feels like it will explode everytime I try to analyze this

 

 

[rowingmom]

That was our LLMD's take on DD's bartonella infection from the get go. That bartonella was the cause of DD's PANDAS symptoms and that by treating the infection properly the PANDAS symptoms would resolve (even though DD always exacerbated with strep infections).

 

Our pediatric psychologist was the first to suggest PANDAS to me, however PANDAS treatment is not an option in Canada. With our government funded healthcare system, treating outside the system was impossible and out-of-pocket costs in the US were unmanageable.

 

At first I was frustrated by our inability to treat with IVIG or PEX, but this roadblock was a blessing in disguise. It saved us years of searching down the wrong path.

 

When I first came to this forum PITANDS (PANS) was barely being discussed, and those that brought up the possibility of lyme or other infections as the causal entity in the PANDAS forum were pretty much ignored or asked to leave. This was when the Lyme and PANDAS forums were separate.

 

I noticed that many of the lyme children were suffering PANDAS symptoms along with physical symptoms that did not seem to fall into the strep infection category. Some of DD's pain symptoms were similar to those of another child suffering from lyme/co, so I took what I thought was the second-best route. Off to the LLMD in the US.

 

I was surprised (and fortunate) that our LLMD (a pediatrician who treats lyme/co in children and adults) had such a grasp on PANS/PANDAS. She was the first to indicate to me that the complex of symptoms that is PANDAS did not indeed have to be caused by strep, but could also be caused by lyme, bartonella or other infections. And that it wasn’t an autoimmune response, but an inflammatory response to infection. She also believed that autism is the result of underlying infections and methylation blockages (and thus an inability to detoxify) – I bring this up because DD has (had) an Asperger’s diagnosis as well.

 

This has indeed been the case for us. Antibiotic treatment for bartonella resolved several of DD’s bartonella pain symptoms right away (so I knew we were on the right track in that respect), but it wasn’t until perhaps a year or so into multiple/combo abx that PANS symptoms started resolving as well. Initially DD’s PANS symptoms flared immediately with abx induced die-off or with other infections (mostly viral). During a viral infection (and fever) PANS symptoms would decline during the fever only to re-immerge when the fever dissipated.

 

But after that year and a half of treatment DD stopped responding in that way. She never has flares in PANS symptoms now. Rages, urinary incontinence, behavioural regression etc. are all things of the past.

 

The fact that die-off (caused either by fever or abx) caused a flare in PANS symptoms indicated to me (just thinking out loud now) that it was brain inflammation induced by endotoxin release that was causing DD’s PANS symptoms. Not autoimmune antibodies circulating in the system as per the PANDAS/Swedo hypothesis.

 

The fact that DD’s herx-induced flares started within minutes/hours of dosing or that removing the antimicrobial lead to an almost immediate decline in symptoms indicated to me that autoimmune antibodies were not likely involved in our case. Perhaps there are two causes for the PANS/PANDAS responses we see in our children; the autoimmune and the direct inflammation. I think in ours it was direct inflammation caused by endo/exo toxins and released cytokines .

 

In DD’s case resolution of most of her PANS symptoms was a direct result of bartonella treatment. The only remaining one was essentially some cognitive/executive function difficulties which have resolved with babesia treatment.

 

Buhner postulates that autoimmune reactions are misunderstood and that they are actually caused by our immune systems attacking undiagnosed intercellular infection. I personally think that the autoimmune hypothesis has lost the forest for the trees.

 

I think Stephanie Seneff's description of the causal factors of autism also apply to the reasons for the long-term chronic infections that our children are experiencing:

 

http://www.autismone.org/content/defining-autism-dr-stephanie-seneff-0

 

It is the body's terrain, the ultimate inability of the immune system to properly deal with infection and the inability of the body's detoxification systems, not the infections themselves, that are causing many of the chronic problems we see in today's children.

 

Edited December 6, 2014 by rowingmom

[sf_mom]

If you read "Cure Unknown" closely, in the early 80's Dr. Jones in CT noticed many children being treated for Lyme also had OCD and it resolved with treatment. This was well before PANDAS or PANS was understood.

 

In the early 1900s Dr. Henry Cotton believed mental illness was the result of untreated chronic infections.

 

http://en.wikipedia.org/wiki/Henry_Cotton_(doctor)

 

I believe Freud's theories and other similar theories were a tragedy to mental health..... those theories essentially disconnected mental illness from physical illness.

 

The pendulum is now swinging back the other way and mental illness is being considered as a physical illness thanks to PANS and PANDAS. Bottom line: more research is needed. I too have a difficult time with the notion of pure auto-immunity and dare I say genetics (our children are not fully biologically related and have the same illness).

 

For now, we surely don't have all the answer so we are only left with whatever method of treatment that works for your child and our shared experiences.

Edited December 6, 2014 by sf_mom

[dasu]

This is interesting - I will have to read more. I've seen Buhner referenced a few times, so I will start there. The larger problem I have is what to do with that information, putting it into practice. We are doing the Lyme and co infection test and the mycoplasma test on the kids (well actually only one to save money on the theory that as both flare together a single cause is the problem). Any other suggestions?

 

One intriguing observation for me is that neither my generation nor my parents have OCD, depression etc. However both of my children are PNDAS and some of my nieces and nephews are effected by OCD, Autism, or bipolar disorder, likely PANDAS.

[nicklemama]

I've been at this for a long time now, 5 years. My opinion has changed a lot over the years. I can only say what I see is treating the lyme and co really helps stamp out the PANS behaviors. My son never had a strep infection prior to his first PANDAS exacerbation at age 5. None of the PANDAS treatments, including IVIG twice, could put a halt to all the flares. Treating for Lyme and co has. He gets flares from dental appointments, even though we give him clindamycin as an additional abx before and after. We don't see flares from things like colds and stomach viruses.

 

We seem to have figures put that flouride treatments at the dentist cause tics and adventitious movements that take several months to resolve. For us, treating lyme, co and methylation defects have been the key.

 

I don't know of this has answered your question directly but I see a lot of commonality between my answer and rowingmom's. I don't know if my sons is autoimmune, inflammatory or a combo of both. He did have a very positive Cunningham back in 2010.

[chubbermommy]

lindamw, I could've written your original post myself. I also wonder if the flares he has are related to the Lyme life cycle, as sometimes he gets worse for no apparent reason.