New here- 18 year old son being tested for PANS, he has Lyme

[ktdommer]

I've been learning as I read the posts on the forum. Looking for answers as I'm sure many can relate.

On 4/22/10 my already sick child has extreme personality change overnight. He didn't have ticks, bladder issues or food issues. He was severely depressed and had bipolar tendencies. Manic at times and suicidal at times.

He tested positive for Lyme, bartonella, babesia, mycoplasms, viruses and weakened immune system later that spring. He went from bed bound and crazy to back to school and playing some sports after 9 months of Lyme treatment which included IV rocephin. He has continued on oral treatments over 3 years now.

Last February he started back to the severe psych issues and slid backwards health wise a bit. Nothing seems to be helping.

I watched Dr. Cunningham during the ILADS feed and learned about her testing. I have just sent it off this week. Does it really take 6 weeks to get results?

Our new ILADS doc is supportive of the testing. PANS seems to fit, especially acute onset.

Any advice for a mother in limbo?

Anyone with adult age children treating PANS?

Thanks,

Kari

 

[JoyBop]

Yes, it does take 6 or more weeks for the Cunningham panel. She said at the pandas conference that she only has one part time person processing the tests due to funding and asked everyone to be patient.

 

Your story does certainly sound like PANS to me. I hope others with a similar experience will chime in with some advice.

[Rachel]

My son is 13 and has had the Cunningham test. It does take 6 weeks but it's worth the wait. I am very new to the PANS/PANDAS diagnosis. Hope your test results provide some answers. My son tested highly likely. Welcome to the forum.

[ktdommer]

Thanks for the replies Joybop and Rachel.

I felt like Cunningham was speaking to me during her ILADS interview. I did not see her presentation.

I didn't believe my son could have PANDAS because he doesn't have a tic. I sort of ruled that out years ago. Didn't know a thing about PANS and new research.

During his years of illness before Lyme diagnosis he had so much strep. In between documented cases he would have a puss filled throat with lots of pain. All that cleared after 3 months of orals for Lyme.

I believe in my gut, that salmonella from eggs benedict could have been his trigger. He was never the same after that brunch. It presented like a severe flu and made all symptoms flare. Landed him bed bound for months. Despite a hospitalization, no one took his psych issues seriously at age 14.

Kari

[LNN]

You may want to contact Dr Cunningham and get her take, but my understanding is that her panel can also come back positive when lyme, not strep, is the trigger. Some strains of strep have an outer protein on their cell surface called an M protien. Lyme spirochettes share this M protein and if memory serves, some cells in the human body - cells on heart valves and cells in the basal ganglia - have very similar looking M proteins. This is what might cause the autoimmune reaction of molecular mimicry.

 

So what your Cunningham results will tell you is whether the body is making auto-antibodies that target on of 4 neuronal receptors in the brain - D1 or D2 receptors, anti-lysogangliosides or tubulin. It also measures one kind of inflammation marker called a cytokine - specifically the cytokine called CaMK II. These markers tell you whether the neuropsych symptoms you're seeing could be auto-immune. But they do not tell you what type of infection is causing the body to make these antibodies against itself and its own receptors. It could be strep, or it could be lyme, or it could be some other infection.

 

If the Cunningham results come back positive, you'll know its PANS but your treatment options will be similar to what you've already done for lyme - long term, combo antibiotics (hopefully your LLMD has done combos of abx and not just one type at a time. If he hasn't, this could be the cause of the relapse). Prednisone probably wouldn't be an ideal option if there's a possibility that lyme is still in the picture. Some Pans/lyme kids are helped by IVIG. Others have a hard time handling the sudden powering up of the immune system - it caused a huge herx for my son when he had IVIG prior to our discovering lyme.

 

Those of us who have kids with lyme have generally followed ILADS treatment protocols and slowly gotten our kids well. If your son has been on abx for 3yrs, I'd test for strep (ASO and Anti-DNase B blood tests) but a lyme relapse sounds worth exploring, regardless of the Cunningham results. The Cunningham Panel doesn't mean that strep is your culprit.

 

If you suspect a virus, antibiotics wouldn't help. Have you explored viral treatments with your LLMD? Have you done a stool test to see what, if anything, is amiss in the gut?

 

Also, depression and bipolar symptoms can be caused by nutritional imbalances in a process called methylation. Methylation is who the body takes raw ingredients (the B vitamins, minerals, other food nutrients) and converts them into neurotransmitters. If you have genetic mutations that prevent the "methylation genes" from working properly, you can become deficient in various neurotransmitters.

 

When the body has a major chronic illness to fight (like lyme of recurrent/chronic strep), it has a limited amount of physical resources available. If it needs to divert resources like vitamin D, zinc, etc toward the immune system, that means it has less of those nutrients on hand to synthesize neurotransmitters. For example, Vitamin D is used in bone development, to aid the immune system, to regulate sleep cycles and to synthesize dopamine. If the body has to redirect its D toward the immune system, you could see disruptions in sleep or dopamine (e.g. depression or anger) because there isn't enough D to go around.

 

So if there's any sort of chronic infection, or if a less than perfect diet prevents the body from recovering from nutritional deficiencies caused by an illness, you can see neuropsych symptoms even after the infection is under control. And simply taking a multivitamin won't fix things. When you have genetic mutations preventing smooth sailing, you need specific forms of vitamins that will bypass the mutation roadblocks in your unique chemical plant. I've seen huge improvements in my kids' symptoms and behaviors since addressing methylation issues - even after chronic infections were addressed.

 

So I hope the Cunningham Panel gives you a better sense of what's going on, but realize it's the tip of the ice berg. The good news is that there are multiple paths you can take to get your son back on track.

[ktdommer]

I am appreciate your informative reply llm.

My son got better with orals and IV, makes me wonder if that confirms PANS or if it was Bart clearing temporarily. We blame rages on Bart.

He has been with two ILADS docs. Newer doc is brilliant. Very integrative in depth treatment targeting a lot of things. Doc trained with Horowitz and understands the body from hormones to nutrition. Tested positive for MTHFR polymorphism recently. Addressing that now. KPU being addressed. Many overlapping symptoms with PANS. Vit. d always low. Takes 12,000 mgs a day.

New doc has tripled anti-viral Valtrex. ABx combos always include at least 3. Also taking supplements.

Stool kit is sitting on counter. Hard to get an angry 18 year old to follow through on that one. So many send out kits with new doc. Good info but not covered by insurance.

IVIG was denied so doc is working on an appeal. How old was your son when he did IVIG? Did insurance cover it? If so, under what diagnosis?

I look forward to learning more.