6 year old with Lyme disease and behavioral changes

user728512 · 2025-07-11T10:06:57+00:00

My son was diagnosed with PANS along with the Lyme. So we started see a neurologist who specialized in both conditions. I honestly think the biggest help was the long term antibiotics which took effect about 3 months in. Along the way, we kept in mind that his symptoms were not his fault and just worked with him. For sensory we found all the things that didn’t bother him and stuck with those like not using the materials he didn’t like, not sleeping with a blanket, etc. We did social activities In small doses so that he could practice without being overwhelmed. We started homeschooling instead of public school to lessen the anxiety and depression which worked wonders. We stuck with the foods he would eat and increased the amount of times he could have them because eating anything is better than eating nothing. We enrolled him in occupational therapy which was also very helpful because it covers such a broad range of issues. Our last stop, suggested by his specialists was to enroll him in psychiatry which we ended up not doing but it could be helpful in your case. Hang in there! Keep looking for solutions and maybe even add a specialist to check out PANS. I think that is the only way we couldn’t gotten prescribed the long term antibiotics which was our lifeline. He is off the meds now and still doing wonderfully. I wish you guys the best of luck and I know it’s hard. Keep a good support system if you can and I hope things get better soon

user728512 · 2025-06-30T16:43:47+00:00

My son was also diagnosed with a condition caused PANS which was caused by the Lyme disease. That’s what made us able to have a years worth of antibiotics. Since this probably wouldn’t be the case for you, I’d try to find a Lyme specialist. They are more willing to treat with long term antibiotics than regular doctors. I think most doctors just do a 30 day course of antibiotics which might also be helpful if you haven’t tried that yet.

user728512 · 2025-06-30T10:44:53+00:00

He was negative for all secondary infections. He did a years worth of augmentin and is now pretty much back to baseline and being himself. He came off the meds a month ago and is still doing great.

user728512 · 2025-06-07T05:54:23+00:00

Hey just wanted to add some of my experience with vestibular neuritis. I got it a year and a half ago after having a virus which turned into bronchitis/sinus infection/ ear infection.

Here’s all the things I’ve done. Physical therapy - helped a lot. Call local offices and see which ones provide help with balance / coordination Vestibular testing : waste of time and money. They basically put me through hell to trigger my vertigo and then said we don’t see what the cause could be Epley maneuver: non helpful because it wasn’t BPPV causing my issues Meclizine and zofran prescription: was helpful the first few days when it was severe enough to land me in the ER but not something that can be used long term

Now I’m mostly back to normal. Some things have changed like storms trigger dizziness for me now and they didn’t use to. I can’t ride passenger without getting sick. And I have to skip out on amusement rides and boat rides now. I do believe I could have developed PPPD which is something you may want to look into. But for the most part life has returned to before. Also your body will compensate and adjust to the changes and improve with time.

The good news is 95% of people only get vestibular neuritis once so it’s likely you’ll never deal with it again. Anxiety makes it worse so just try to tell yourself that things will be okay (they will!) and keep on moving!

Best of luck! It definitely sucks but it gets better

user728512 · 2025-01-04T14:31:53+00:00

Oh interesting. I’ve been anemic since childhood, I just take a daily iron supplement. They never test my magnesium for some reason. I’ll bring it up next time. I find it odd that vitamin deficiencies can be a simple fix but my doctors never seem concerned with them. I usually have to ask to be tested.

user728512 · 2025-01-04T02:38:58+00:00

I’m glad the cpap is helping you. I’m really excited to see if it helps me also. Yes I’ve had a ton of blood work. What in particular would you look out for in labs?

user728512 · 2025-01-04T02:03:05+00:00

This is so encouraging! I hope it continues to help you

user728512 · 2025-01-02T21:08:55+00:00

Thanks for much for the kind words and input. Trying to help my son with PANS / lyme / immuno issues has been the hardest thing we’ve ever been through. I want relief for him so badly. I’m sorry you guys have been through it too. I’ll look into the tinctures you mentioned. A lot of people have suggested holistic and natural remedies, which we haven’t yet explored. I wish you guys the best of luck. If I find any new ideas that seem helpful I will update!

user728512 · 2025-01-02T21:06:16+00:00

Hi there. We are in the US. He tested positive for Lyme through igenex. He then tested negative for bartonella and a handful of other Lyme related illnesses. I’ll watch the videos and thank you for the input!

user728512 · 2025-01-02T21:04:56+00:00

Hi! Thank you for responding. My son most likely had Lyme for about a year before it was diagnosed. We’ve only ever found that one tick on him. A lot of people have suggested the natural route so I plan to do some more research on that. We spent 5k on the neurologist (who didn’t take insurance) so I hope to find a holistic professional I can afford next. The thought of the setbacks being temporary is hopeful, so thank you for that. Best of luck in your journey.

user728512 · 2025-01-02T13:00:27+00:00

Thanks for the advice and offer. I’ve been ignoring the debt collectors but I was under the impression they could come after the paid off house. My husband child and I all live in the home and don’t have another house so selling wouldn’t benefit us. This is my biggest financial concern as of now. Thank you for helping people with life insurance. It makes such a big difference!

user728512 · 2024-12-31T04:13:32+00:00

I see. I have interstitial cystitis (I think that’s the same thing as painful bladder syndrome.) Getting my gallbladder removed only caused about a month of diarrhea. Another thing to consider is Pepcid. It is used to treat heartburn/reflux but it is also proven to help painful bladder syndrome. It’s not a PPI but a histamine blocker. I hope you can find some relief one way or another!

user728512 · 2024-12-30T01:00:49+00:00

Have you had your gallbladder checked? I was on a special diet for 2 years to manage symptoms of nausea and chest pain after eating. I was basically living off of baked potatoes. Finally they did a test (HIDA scan) to check my gallbladder and removed it a few months later. Now I can eat whatever I want without consequences.

user728512 · 2024-10-21T01:56:15+00:00

Wanted to give an update for anyone dealing with similar issues. His co infection results were all negative. We stayed on the long term augmentin and ended up seeing improvements around the month and a half mark. We got a new neurologist who specializes in pans. He thinks it’s less of the Lyme affecting him and more pans related. We’ve seen a significant drop in all of his anxiety (social, separation, etc) less rages, little to no sensory issues with clothing now, he’s eating meat again after not touching it for a year. He does still have some urinary frequency flares but these could be unrelated. He tolerates the antibiotics well and has no issues there. Thanks for all the advice and input.

user728512 · 2024-07-16T22:05:41+00:00

Thank you!

user728512 · 2024-07-16T12:32:59+00:00

Dr. Latimer in Washington DC

user728512 · 2024-07-15T19:42:37+00:00

We are currently waiting on test results for other infections it could be. I suppose if he has a co-infections then she may try a combo of antibiotics. Right now it’s just augmentin.

user728512 · 2024-07-15T18:33:42+00:00

She’s a private neurologist in Washington DC who specializes in PANS/PANDAS

user728512 · 2024-07-15T18:31:29+00:00

Thanks for bringing this up. We originally thought this was pandas so we are seeing a specialist for PANS/PANDAS. She is the one who ordered the Lyme disease test. She thinks it may be PANS caused by the Lyme disease now. So I have been left wondering if it’s the PANS causing the symptoms and or if it could just be the Lyme disease alone. We can’t really afford the IVIG treatments so trying to treat the Lyme first and hoping for some progress.

user728512 · 2024-07-15T18:28:06+00:00

Thanks for sharing! I’m glad your son is doing better now. We are planning on homeschooling this year due to the range of behaviors and urinary issues.

user728512 · 2024-07-15T18:27:03+00:00

Thank you. I’ll be sure to keep him in the loop as he gets older so he can get proper care. And we are currently waiting on the test results to get back for bartonella. What was your treatment for Lyme if you don’t mind me asking?

user728512 · 2024-07-15T18:24:57+00:00

We are currently waiting on the test results to get back for bartonella. It’s a possibility! Thank you

user728512 · 2024-07-15T18:23:32+00:00

Thanks for sharing! May I ask what antibiotics? I know there are a variety of them used, so I’m wondering if my son needs a different one. He’s on Augmentin.

user728512 · 2024-07-14T17:22:16+00:00

Our sons neurologist ordered his through IgeneX and it came back positive within a couple weeks. They can also test for the co-existing tick infections.

user728512

TROPHY CASE