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jep1978

Separating PANS from Lyme/Bart

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Hello, I am hoping some of you can help me. I have been on a Lyme/Bart "Journey" with my 8 year old for 4 years now. From about birth to 5 years old he had what is presumed to be congenital Lyme, and had very light developmental delay/mild ASD and some body issues like low tone, tired easily. We treated in various ways, and things were tremendously improved for about 1 year he was totally normal, happy, social, curious, good natured, academically advanced. He lost any concerns of ASD by age 3. We were so relieved.

Unfortunately changes happened about age 4 or 5 slowly. He seemed to develop a hoarding feeling with anything that I was getting rid of: any trash, donating clothes, scraps of paper he would freak out and cry if he thought he was never going to see those items again. If I was going to put something away that he built like a train track or block tower he would flip out.

He slowly lost interest in almost everything that brought him joy in the past (riding bikes, expressing love to family members, reading books, coloring). He had done all of these things, and was always looking forward to the future holidays, visits from family etc. He is totally opposite now. 

He began new hobbies that I thought replaced the old, but now it is clear these were OCD compulsions: folding origami for hours at a time, studying maps, or playing piano. He did each of these separately as his only hobby for a few months, then would move onto the next thing. But now even that has stopped and he has no interest. He only plays computers, jumps on trampoline tapping the side of the net for about 2 hours a day, or lays around doing nothing.

He also began a constant whistling that lasted all day and went on from about age 6-7. It was totally uncontrollable.

He has replaced the whistling with moving his hands like he is piano at various times throughout the day.

He acts unloving and often mean to family members with no warning. Laughing if someone gets hurt, not greeting someone as they arrive home etc. He used to make bday cards and gifts and feel so proud to share.

He also spends much of the day saying he is hungry and asking for snacks even when he just ate.

He used to love doing art, drawing, and writing stories. He never reads, writes, or draws. When he does, it looks like a 3 year old's work.

Most notable and devastating is behavior and mood change that often mimics bipolar. He switches back and forth Jeckyl and Hyde style during the course of the day. We all walk on eggshells and any little disappointment (or sometimes without provocation) creates a major rage often ending with him trying to hit himself or bang his head. He says things like "I want you to hurt me". 

I have been at this a long time and have done all the basic things, gluten free, casein free 2 full years, probiotics, fish oil, carnitine, b12 shots, lyme antibiotics, lyme herbs, amino acids for mood, testing for rare disorders that can mimic bipolar, neurofeedback....the list goes on. 

So now I am wondering if this can possibly not be lyme anymore, and the antibodies have just caused PANS. Since the disorders are so similar I am having trouble pinpointing which is the one causing the major symptoms. He is a shell of hi former self. 

I have had to homeschool him the last 2 years due to his volatile moods, and lack of motivation.Teachers don't know why he is fine one minute, and oppositional defiant the next. 

I have great Lyme experts that I have worked with in the past (and currently) and it seems like things lighten up a bit at first then get bad again. But the old enthusiastic, creative kid has never returned. I would love any feedback or advice. 

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PANS can be trigger by chronic Lyme and co-infections.  Are you still treating for Lyme?  Did you treat for any other co-infections?

We have three children, all gestational Lyme and have been treating ongoing for last seven years.  Our older son was a clear PANS child.  Strep, MMR and virus all within three week period woke up a different child at 5 1/2 years old.  Younger twins had ASD and Asperger's presentation at 2 1/2 years old.  

They are now 10, 10 and 13 years old.  You would never know of their prior diagnoses.  All are living normal lives.  Even our DD's learning disabilities have reversed.  Eye sight improved, etc. etc. etc. 

They have had tons of intervention but are well. I would encourage you to revisit the chronic Lyme et al component to resolve PANS 

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By the way, based on your more recent symptom description I sense he may have a Bartonella issue "volatile moods, and lack of motivation" and not just Lyme.

Many of us with PANS find Lyme, Bartonella and Babesia along with multiple viruses. 

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I understand PANS as an autoimmune disorder that can be caused by lyme, and typically, once PANS has been present for some time, lots of other flare-producing triggers develop.  For most of us struggling with PANS, it seems that there is no cure (except possibly puberty), and all we can do is manage it.  That typically means chasing down the current trigger and trying to eliminate it, and then doing the same with the next trigger that comes along, and the next.

Chasing triggers is art and science.  How are his sinuses?  Tonsils - even if only mildly odd looking, our ENT was shocked when he finally removed them and cut them open to see the mess inside (he didn't think they needed to come out, but obliged).  Does he have any loose teeth right now?  The nasties hanging around in mouth biofilm have good access to the bloodstream with loose teeth, or diseased (swollen) gum (our dentist confirmed that one after we had a bad flare after a teeth cleaning).  There are many, many more questions and things that can be chased, some of them hard but possible to check at home (e.g. swab for perianal strep).  It is a long road, with many forks (including some that I consider dubious science, and so avoid), but improvement is very possible.

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Our son had many,many of the same symptoms that you describe with your child. It was awful and I feel like he had these symptoms from about 4 years old. He is 9 now. It has been very hard on everyone, especially him, I can only imagine. We are 1 month post IVIG and I have my sweet, creative, fun, kind son back. I am not exaggerating. Emotional lability, aggressive, mean and oppositional behavior is gone. Insomnia and bed wetting and wetting his pants is gone. Tics are 90% gone, as is hyperactivity. If you have not tried IVIG, I highly recommend it and hope that it will help you as much as it has us. It is also part of the pans consortium guidelines released this year.

Good Luck

 

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Thanks everyone, much appreciated. We are currently treating for both Lyme and Bart with herbs under LLMD. I am just wondering about PANS since he isn't improving. We are open to IVIG and have ordered Cunningham panel testing. 

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Does kiddo get low grade fevers? Have you checked (igenex labs) for Babesia?

Seems like that is what is in our way still...We just did IVIG again and got 4 days of bad headaches. I'm hoping that's ultimately a good sign, but his mood is off.

Sirena

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On 9/15/2017 at 11:56 AM, sf_mom said:

PANS can be trigger by chronic Lyme and co-infections.  Are you still treating for Lyme?  Did you treat for any other co-infections?

 

They are now 10, 10 and 13 years old.  You would never know of their prior diagnoses.  All are living normal lives.  Even our DD's learning disabilities have reversed.  Eye sight improved, etc. etc. etc. 

 

sf_mom  Your last two sentences really struck a cord with me!!

Our daughter(11) has PANS (myco) and significant learning disabilities including ocular motor. We have spent years trying to determine what is Developmental Trauma related (she was adopted) and what is PANS or other biomedical issue related Because of the Myco we are going to start looking into Lyme.

Would you be willing to share the treatment protocols you used and how/where you obtained them. Unfortunately where we live we don't have a really good LLMD especially one who also gets the PANS/myco aspect.  

Thanks!

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PANS and Lyme/co-infections can certainly happen all at once.  It's also possible to still have PANS after an infection is gone.  I find it’s sometimes impossible to separate them all (especially Bartonella), and until the infections are under control, you might not make a whole lot of headway with PANS. 

On the other hand, it’s my understanding that treating the infections can sometimes cause so much inflammation that it re-triggers autoimmunity.  It happened to me.  Check out this post I found on the subject, written by an LLMD:

http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html

I have PANS as well as Lyme, Babesia, and Bartonella. I've had pretty much all of the symptoms you described.  I was 95% better after IVIG and a year on a Lyme/Babesia protocol, but when I started Bartonella treatment in August, PANS came raging back.  I thought it was a Herx or Bartonella at first, but no antibiotics (or break from antibiotics) seemed to help, so I was forced to treat the autoimmune component directly.  I'm now back to normal.  If you're not making any headway with antibiotics/Lyme and co-infections treatments, it might be worth going to a doctor who knows more about PANS––or ideally, PANS and Lyme.

Also, a few thoughts on the symptoms you mentioned…

Being totally absorbed or obsessed with an activity is something I used to do to try to block out my disturbing OCD intrusive thoughts and the depression.  But at other times, the depression/cognitive issues are so bad that doing anything at all is too overwhelming and exhausting. I also sometimes have an uncontrollable urge to eat when not hungry as a form of self-medicating my depression, so that could be why he keeps asking for food. 

Has he ever seen a therapist for the OCD/depression?  Therapy isn’t always possible in the middle of a flare, but sometimes it can give tools to deal with the symptoms while pursuing the proper medical treatments.  And the whole thing is so difficult to live with that it might be helpful for processing it.

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D-Four-Kids: I rarely check the forum anymore but had a few minutes to kill today and just happened to see your post.

We live in Northern, CA near Stanford University.  Our children see a well known LLMD that is located in Foster City, CA  and treats children. They have an integrative pediatrician that specializes in ASD & PANS.  Plus an additional integrative Dr. that does off label IVs that also treats ASD & PANS.  

Their pivotal therapies have been: Combinations Antibiotics, IVIG for Immune Deficiencies, IV Ozone and PK Protocol.

You are welcome to private message me if you would like their names.

 

 

 

  

 

 

 

 

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