Dx Lyme - after PEX for PANDAS

[RNmom]

I would like to post updates on our son's Lyme / PANDAS treatment in case it would be helpful to someone. Please understand that I am learning as I am sharing... any info. others would like to add would be greatly appreciated!

 

10/21/10: DS14 started Doxycycline 100mg TID; Difulcain 100mg QD; VSL #3 DS (medical grade probiotic with 30 Billion units lactobacillus)... also Theralac, Pearls Immune, Caprylic Acid, Milk Thistle, Vit A, Nordic Naturals + D, Melatonin, and detox with Charcoal tablets are ongoing. Also started on GFCF diet due to results of food allergy testing... not so perfect at it yet.

10/26/10: Bicillin 1.2 LA IM (Emergency intervention due sudden onset of serious PANDAS symptoms: including biting his hand, red rash on face and neck worsening, "moro reflex," OCD "checking" and some other repetitions.)

10/27/10: Obvious relief of PANDAS flare - 75% reduction in anxiety/agitation, rash on face and neck now "pink," no moro reflex, few if any "checking" behaviors.

11/03/10: Returned to school after being home bound since February, 2010... No bite marks seen since Bicillin shot.

11/6-8/10: Mild to moderate uptick in PANDAS symptoms: red rash flaring again, moro reflex back, speech and cognition inflexible.

11/09/10: Scheduled for 2nd Bicillin shot (1.2 LA)

11/10-15/10: Results of 2nd Bicillin (1.2 LA ) shot are "mixed." Initial, brief relief of anxiety noted. Initial, but brief, improvement in speech and cognition - speech more fluid and cognition more flexible. However, the red rash is worse (not better) and the moro reflex is back. Sadly, after a few days of improvement, his speech is once again clipped and pressured and his cognition less flexible with lots of OCD flaring up - checking my face a lot.

 

11/15/10: An appointment becomes available with a local LLMD with whom we have been wait-listed - We take it!

LLMD reviews ds14's long medical history for PANDAS, all medications and supplements, recent positive Lyme tests (My Lyme ID), pos. Mycoplasma IGG, pos. EB titer IGG, pos. Candida titer (blood test), IGG food allergy testing results (which showed lots of III's and II's).

PLAN:

1. Immediate increase in Bicillin regime - 2.5 LA IM today, then every four days for a total of four doses. LLMD says this is his preferred treatment for PANDAS and it happens to be a pretty good treatment for Lyme as well.

2. Increased Diflucan to 600mg a day.

3. Also, started Vit D 50,000 units twice weekly.

4. Nutritional counseling (GFCF diet plus no eggs, no beef, no salmon means he will starve if we do not figure this out!!

5. Continue other meds until response to Bicillin evaluated then we will proceed with more Lyme tx (most likely).

 

11/16/10 AM afer Bicillin 2.5 LA #1: Red rash on neck and face = PINK! (rash almost gone on neck), direct eye contact with conversation, speech more fluid, conversation more flexible, body movements relaxed, DS14 says he feels better, no "checking" behavior.

11/17/10 (afternoon): Note from history teacher at school - "He seems to be better able to track the lesson today..."

11/17/10 (evening): RED RASH BACK, moro reflex back, states "I am stressed... of course it is obvious I am worked up..." Interactions difficult this evening due to inflexible thinking, more OCD "Checking."

11/18/10: Can't wait to see if today's Bicillin #2 is helpful...

I will update on the results of Bicillin IM #2 this weekend...

Edited November 18, 2010 by RNmom

[PacificMama]

Hi,

 

I just posted a reply on your other post. But I wanted to wish you well on your son's treatment. It sounds like you are having progress, but also seeing a teeter totter. It's early, and that's pretty normal.

Keep us posted.

 

Mary

[KeithandElizabeth]

It really sounds as though those bicillin shots are helping. I am guessing you are seeing Dr. B (the LLMD Dr. B versus the immunologist Dr. ? I heard that he has great success with treating PANDAS with the bicillin shots and does not usually recommend IVIG?

 

I just want to encourage you in that the lyme road can be soooo bumpy, but I think the trend will be upward after the initial few months.

 

It also sounds like you are doing a great job with the detox aspect of lyme treatment!

 

Keep posting your updates! They are great and we can all learn so much from eachother.

 

Elizabeth

[JuliaFaith]

Thank you so much for posting your story! This is weird, but our dr. today said she was researching something and I asked her if she had heard of Bacillin and that is what she is researching! So we are following your story very closely. Thank you so much and we hope the best for your son.

Edited November 18, 2010 by JuliaFaith