Anyone dealing with PANS and Lyme?

[boysrlove24]

Hi everyone,

I'm new to the forum - my ds11 was recently diagnosed with PANDAS/PANS and Lyme. He had a positive Cunningham Panel, and positive Western Blot IGM, IGM Epitope and positive B. Duncani coinfection. We have been treating him with doxycyline, bicillin injections and Tindimax to address the Lyme. Last November he developed a head tic which was treated with antipsychotics by a neurologist. It wasn't helping so she ran some labs and determined he has PANDAS. Since then he's also tested positive for Lyme.

 

I'm wondering if anyone else has experience with both PANS/PANDAS and Lyme? Have you made any progress? How do you treat it? Do you go after the inflammation from PANS first? Or do you try to tackle the Lyme first? He's been on antibiotics for the Lyme for 40 days now and his head tic is not improving so I'm wondering if we should really be treating the PANDAS/PANS inflammation and immune system problems first?

 

I'm very confused - and exceptionally concerned that my son has been on so many antibiotics to treat the Lyme with little to no improvement in the tic.

 

If anyone has any thoughts or experience in dealing with this I would LOVE to hear what you've learned on your journey and what has helped/not helped, etc.

 

Thanks!

[LNN]

Welcome. There are many, many PANS kids who've battled Lyme and you can search the forum for older discussions - many from the '09-'11 time frame. Te members on this forum are the ones who eventually convinced Swedo et al that Lyme can be as much of a trigger as strep and this led to the acknowledgement of PANS.

 

There is a research paper from Dec '15 that shows how Pandas and Pans happens - the body gets infected by a bacteria that provokes the immune system to create antibodies called Th17 cells. Immune cells are often their most active in parts of the body that are meant as "front lines of defense" - e.g. the gut lining, the skin, the sinuses, the lungs - places that are most exposed to outside invaders. Th17 cells that are in the sinuses can migrate up the sinus tissues and into the olfactory bulb. In Pandas/Pans, these Th17 cells are able to cross thru a bony structure at the top of the olfactory bulb called the cribiform plate and then cross over the blood-brain barrier. Once on the wrong side of the BBB, the Th17 cells are treated as invaders and trigger an autoimmune attack and inflammation, causing Pans symptoms.

 

The paper is here - http://www.jci.org/articles/view/80792

 

Lyme is one of the bacteria that triggers Th17 antibodies.

 

So your question about what to treat first is that you've got to manage the inflammation while treating the infection(s). But the inflammation isn't going to go away until 1) the infection is cleared and 2) the BBB is closed.

 

Here's a good article about what may cause tics - http://www.haaretz.com/israel-news/science/.premium-1.730584?v=B3F0645CBADA2097AD188921173B405B

It looks like the article has been restricted but you may be able to find it elsewhere by searching on the author. In the paper, it talks about tics being caused when a portion of the basal ganglia gets overwhelmed with signals and mis-fires due to the inability to process all the signals efficiently. Reduce inflammation and the tics go away.

 

So if your son's tics are still present, it doesn't mean the Lyme isn't being treated. It just means you have a whole lot of inflammation going on in that part of the brain. 40 days is unfortunately just the start of treatment. My son was on multiple antibiotics (up to 4 different ones at once) for 2.5 yrs. He was a big ticcer and we found out that it wasn't just strep and Lyme that could cause his tics, but also mold (which was in his school building) and high mold counts in the environment (spring and fall).

 

The good news is that after 2.5 yrs of treating Pandas with tonsillectomy, steroids, plasmapheresis and IVIG - which helped but not completely - he was correctly diagnosed with Lyme. With 1.5 yrs of heavy Lyme antibiotics and then 1 yr of antibiotics plus mold focus, he was totally healed and has been off all medications for 3 years. He went from being extremely hindered - physically and academically - to being very healthy and academically strong. He hasn't had a Pandas flare (from strep or anything else) in 1.5 yrs. He's 14 now - showed his first Pandas signs at 3 and was diagnosed at age 6. Healed at age 11.

 

It is a long battle. You will learn a lot about many integrative and alternative approaches. Some will work and some won't. But don't lose hope. Kids can heal and move beyond - often much faster than their mothers can!

 

As my son recovered, my younger daughter went from "iffy" Pans to full-blown Pans. Her issues have been predominately mold and sinus infections (staph) - no Lyme. She's allergic to most antibiotics, so we've found great success with herbal antibiotics and anti-inflammatories. If this resonates with you, let me know and I'll share more about the things that helped.

[boysrlove24]

Welcome. There are many, many PANS kids who've battled Lyme and you can search the forum for older discussions - many from the '09-'11 time frame. Te members on this forum are the ones who eventually convinced Swedo et al that Lyme can be as much of a trigger as strep and this led to the acknowledgement of PANS.

 

There is a research paper from Dec '15 that shows how Pandas and Pans happens - the body gets infected by a bacteria that provokes the immune system to create antibodies called Th17 cells. Immune cells are often their most active in parts of the body that are meant as "front lines of defense" - e.g. the gut lining, the skin, the sinuses, the lungs - places that are most exposed to outside invaders. Th17 cells that are in the sinuses can migrate up the sinus tissues and into the olfactory bulb. In Pandas/Pans, these Th17 cells are able to cross thru a bony structure at the top of the olfactory bulb called the cribiform plate and then cross over the blood-brain barrier. Once on the wrong side of the BBB, the Th17 cells are treated as invaders and trigger an autoimmune attack and inflammation, causing Pans symptoms.

 

The paper is here - http://www.jci.org/articles/view/80792

 

Lyme is one of the bacteria that triggers Th17 antibodies.

 

So your question about what to treat first is that you've got to manage the inflammation while treating the infection(s). But the inflammation isn't going to go away until 1) the infection is cleared and 2) the BBB is closed.

 

Here's a good article about what may cause tics - http://www.haaretz.com/israel-news/science/.premium-1.730584?v=B3F0645CBADA2097AD188921173B405B

It looks like the article has been restricted but you may be able to find it elsewhere by searching on the author. In the paper, it talks about tics being caused when a portion of the basal ganglia gets overwhelmed with signals and mis-fires due to the inability to process all the signals efficiently. Reduce inflammation and the tics go away.

 

So if your son's tics are still present, it doesn't mean the Lyme isn't being treated. It just means you have a whole lot of inflammation going on in that part of the brain. 40 days is unfortunately just the start of treatment. My son was on multiple antibiotics (up to 4 different ones at once) for 2.5 yrs. He was a big ticcer and we found out that it wasn't just strep and Lyme that could cause his tics, but also mold (which was in his school building) and high mold counts in the environment (spring and fall).

 

The good news is that after 2.5 yrs of treating Pandas with tonsillectomy, steroids, plasmapheresis and IVIG - which helped but not completely - he was correctly diagnosed with Lyme. With 1.5 yrs of heavy Lyme antibiotics and then 1 yr of antibiotics plus mold focus, he was totally healed and has been off all medications for 3 years. He went from being extremely hindered - physically and academically - to being very healthy and academically strong. He hasn't had a Pandas flare (from strep or anything else) in 1.5 yrs. He's 14 now - showed his first Pandas signs at 3 and was diagnosed at age 6. Healed at age 11.

 

It is a long battle. You will learn a lot about many integrative and alternative approaches. Some will work and some won't. But don't lose hope. Kids can heal and move beyond - often much faster than their mothers can!

 

As my son recovered, my younger daughter went from "iffy" Pans to full-blown Pans. Her issues have been predominately mold and sinus infections (staph) - no Lyme. She's allergic to most antibiotics, so we've found great success with herbal antibiotics and anti-inflammatories. If this resonates with you, let me know and I'll share more about the things that helped.

Hi! thank you so much for your wonderful response. Your reply made us very hopeful for our son. Couple more questions if you don't mind.

 

Do you think your journey would have been shorter or different if you had identified that Lyme early on? Or do you think it was the natural progression of things? I feel fortunate that we have discovered not only PANS but also Lyme 7 months into our journey. I know it could have been much longer but it's because of forums like these and mothers like you and everyone else here that we were able to find PANDAS/PANS and get a quick diagnosis.

 

You mentioned sterioids and IVIG. We have been told on several occasions that IVIG is the next thing for our DS. We have also heard that one way to be sure that IVIG will help is to try a steroid burst - if he improves with the steroid then there is a good chance he will improve with IVIG. What do you think about this theory? I've read on this forum that steroids did help eliminate the tics for a brief period but in every case they come back and I saw many say that the tics are worse. Any experience you or anyone reading this has with steroids would be great to hear.

 

And what about IVIG - how many rounds did your son go through and how did he respond?

 

We are also wondering about tonsillectomy - my younger son (without PANDAS/PANS so far) has been identified as a strep carrier - he is it but we don't know it because he has no symptoms. Wondering if not only my PANS son should have a tonsillectomy but also my younger boy due to this carrier situation. Oh my goodness...it can be so overwhelming some days.

 

Thank you for your help and insights. I hope some day I can help someone in the same way that you are on this forum.

[LNN]

Yes, I think our journey would've been much shorter if we'd found the Lyme early on. You're very lucky to have a doctor who's willing to diagnose Pandas, do the Cunningham Panel and order Lyme & co-infections testing. Hopefully, the infections and inflammation will be less severe than it was for my son. My one word of advice is to be sure you're working with a doctor who specializes in Lyme first, not Pandas first. Lyme and co-infections can be tricky and sometimes require that you look beyond the obvious.

 

When my son did IVIG, we didn't know he had Lyme. He had a horrible, horrible reaction - 10 weeks of absolute . It seems that his immune system was so weak from being sick that when we infused him with mega doses of door antibodies, he suffered a major herxheimer reaction and his symptoms became far worse, particularly his rages and emotional dysregulation. It was too much too soon. 6 years later and I still get a knot in my stomach when I think back to it. Ironically, it was his horrible response to IVIG that led us to discover the Lyme. But to do it again, no, I would not do IVIG to treat Lyme (we only did one treatment). There are parents who've done this and felt it did help, after the initial herxing. But I personally can't recommend it. I think you can heal in a far gentler manner and in a way that brings less inflammation and less short term damage - both from inflammation and from the emotional scars it can leave. Again - my experience only and others have had different results.

 

Steroids - we did them three times - twice they helped immensely. This was before my son's T&A and while strep was part of his illness. The third time, the strep wasn't the issue and the Lyme was, and it didn't give us much relief. The steroids didn't impact his tics one way or the other. But they did help with cognition and emotions. Unfortunately, the benefits didn't last. Within a month, we were back on the roller coaster. It showed that his issues were from inflammation, and it was great to get a little relief. But it was hard to watch it all disappear once we stopped. In our case, a positive response to steroids didn't equate to a positive IVIG experience.

 

Re: your strep carrier son - yes, I'd do a T&A if you can. The fact that he can be infected and no one would know it will just make it harder to interpret your other son's responses to treatments. Just one unnecessary hurdle that can be easily removed, IMO. My son's tics diminished drastically after his T&A - his tonsils were chronically infected.

 

From what you've shared, I'm guessing you're being treated by a Pandas specialist who uses bi-monthly IVIG as part of his protocol. Some families with Lyme have felt this was beneficial. Some have moved on to doctors who specialize in Lyme, including us. It depends on your personal feelings about how to tackle this problem and how you feel about integrative medicine and how you feel about the doctor and his/her staff. There's no "right" answer. Just answers that are right for you.

[boysrlove24]

Yes, I think our journey would've been much shorter if we'd found the Lyme early on. You're very lucky to have a doctor who's willing to diagnose Pandas, do the Cunningham Panel and order Lyme & co-infections testing. Hopefully, the infections and inflammation will be less severe than it was for my son. My one word of advice is to be sure you're working with a doctor who specializes in Lyme first, not Pandas first. Lyme and co-infections can be tricky and sometimes require that you look beyond the obvious.

 

When my son did IVIG, we didn't know he had Lyme. He had a horrible, horrible reaction - 10 weeks of absolute ######. It seems that his immune system was so weak from being sick that when we infused him with mega doses of door antibodies, he suffered a major herxheimer reaction and his symptoms became far worse, particularly his rages and emotional dysregulation. It was too much too soon. 6 years later and I still get a knot in my stomach when I think back to it. Ironically, it was his horrible response to IVIG that led us to discover the Lyme. But to do it again, no, I would not do IVIG to treat Lyme (we only did one treatment). There are parents who've done this and felt it did help, after the initial herxing. But I personally can't recommend it. I think you can heal in a far gentler manner and in a way that brings less inflammation and less short term damage - both from inflammation and from the emotional scars it can leave. Again - my experience only and others have had different results.

 

Steroids - we did them three times - twice they helped immensely. This was before my son's T&A and while strep was part of his illness. The third time, the strep wasn't the issue and the Lyme was, and it didn't give us much relief. The steroids didn't impact his tics one way or the other. But they did help with cognition and emotions. Unfortunately, the benefits didn't last. Within a month, we were back on the roller coaster. It showed that his issues were from inflammation, and it was great to get a little relief. But it was hard to watch it all disappear once we stopped. In our case, a positive response to steroids didn't equate to a positive IVIG experience.

 

Re: your strep carrier son - yes, I'd do a T&A if you can. The fact that he can be infected and no one would know it will just make it harder to interpret your other son's responses to treatments. Just one unnecessary hurdle that can be easily removed, IMO. My son's tics diminished drastically after his T&A - his tonsils were chronically infected.

 

From what you've shared, I'm guessing you're being treated by a Pandas specialist who uses bi-monthly IVIG as part of his protocol. Some families with Lyme have felt this was beneficial. Some have moved on to doctors who specialize in Lyme, including us. It depends on your personal feelings about how to tackle this problem and how you feel about integrative medicine and how you feel about the doctor and his/her staff. There's no "right" answer. Just answers that are right for you.

Very interesting about treating the Lyme before the PANDAS/PANS - isn't treating the PANS what will help him get rid of the inflammation? Or is it the Lyme causing inflammation?

 

We are currently working with an Integrative medicine doc that has some experience with both PANDAS and Lyme but I would not say she's an expert in either. We decided last week to fly to NJ at the beginning of August to see Dr. Trifiletti - to help us understand what is happening with our son. We live in Southern California and I've found that there are several docs here that know a little about PANDAS/PANS but nobody knows a lot. I fear that our son will continue to worsen with each month that goes by as we hop from doctor to doctor trying to find someone that really knows what we're dealing with. I'm very concerned about the Lyme mix in our situation though and I'm praying that Dr. T. has dealt with both. He is the expert right so I'm hoping he will help us. Otherwise I think we'll end up trying different antibiotics and treatments that don't help my son and possibly make him worse.

[LNN]

Dr t does not treat Lyme.

Lyme is one of the triggers of Pans. So it's the same thing.

I'm not on pc right now, so hard to type. There are a few pans/lyme docs in northern California. I will pm you tomorrow.

[boysrlove24]

Would love to receive some referrals to Northern California LLMD/PANS experts. Thank you!!

[boysrlove24]

Dr t does not treat Lyme.

Lyme is one of the triggers of Pans. So it's the same thing.

I'm not on pc right now, so hard to type. There are a few pans/lyme docs in northern California. I will pm you tomorrow.

Hi llm,

 

I'm going to private message you (hopefully I know how...) to see if you can recommend some Lyme/PANS docs in Northern California.

 

Thank you!

[mama2alex]

Hi, we are one of the families in N. California who has been dealing with PANS and Lyme. As it turned out, I have Lyme too and most likely gave it to my son during pregnancy/birth. We also both have "co-infections" of Lyme, including Bartonella and Babesia. LLM explained the relationship between PANS and Lyme better than I ever could. Our focus, once we learned about Lyme and co-infections, has been to treat the infections while simultaneously supporting the immune system and detoxing. Mold exposure has repeatedly thrown a wrench in our progress, so it has been a long road for us. We have a wonderful LLMD on the SF Peninsula, so I will PM you his name. We recently switched doctors after working for a few years with a doctor who specialized in mold, but also treats Lyme. We're now working with a doctor who is more of a Lyme specialist, but he has definitely worked with a number of PANS kids and understands the relationship.

[boysrlove24]

Mama2alex,

 

Thank you so much for your response. I would love to know the name of your new LLMD - thank you!

 

You all have also clued me into mold - I guess you can have your home checked for mold? Is there a test that can be run on my son to determine if mold is an issue? I have an appt with his current integrative med doc tomorrow and will ask her as well.

 

Sincerely appreciate your feedback!

[mama2alex]

Here's a link to the lab tests recommended by Dr. Ritchie Shoemaker. I'd encourage you to read other sections of his website to learn more. Our doctor originally did the HLA-DR genetic test, and when it showed that I was mold susceptible and my son was multi-susceptible, he ran the MSH, TGF-beta 1, C4A, MMP-9, Visual Contrast Sensitivity (VCS), and maybe a couple of others - they were all abnormal, with our C4A's being sky high. He also had us do an ERMI test on our home and that was high.

 

http://www.survivingmold.com/diagnosis/lab-tests