son has PANDAS....wondering if he also has Lyme based on AB response

[Kimflow]

Hi,

 

In the past 4 weeks, we have been faced with PANDAS now joining the autism diagnosis. And since he went into autism after 6 ear infections, I wonder if strep wasn't a big part of the problem from the beginning.

 

We had 3 weeks of very high anxiety/sensory issues high/developmental regression in that he would not click the mouse, open the fridge, etc. He wanted you to to it.

 

I was "ruling out" Pandas by getting a throat culture and boom, he turns up positive. No symptoms at all except what I described above.

 

Zpack.....During z pack, he actually got OCD and choreiform movements. His eye squinting and tongue protrusion part of his tic disappeared. One interesting and now scary thing for me with the little reading I have done on lyme is that 5 hours after his Zithro. dosing, he would have major exacerbation in choreiform movements. I thought he was reacting to the pink dye on the caplet. The 5th day of dosing the zithromax, the choreiform movements were the worst....they went from his head/neck/shoulders trunk and left arm and left leg. It was very scary. But now I worry the zithro. was killing off lyme??? Any thoughts?

 

So he took 1 dose of his 1 time a week prophylactic zithr. that the DAN gave us and 3 days later, he tested positive again for strep. Amoxicilling 10 days this time.

 

The zithr. seemed to produce a little bit of positive change.....in language, eye contact, and surprisingly enough, his nasal passages seemed to be clear for once. Some of his separation anxiety got better but his tics remained and the choreiform movements and OCD started.

 

On amox., he definitely feels better so I feel like it is treating the strep throat. He also does seem to be having cycling of hte intensity of the choreiform movements. still has a head roll. But the other part of me is wondering...is he happier because the amoxicillin does not treat the lyme coinfection he may have whcih was causing some herx?????

 

Anyhow, Wed. a doc will give me prophylactic antibiotics daily and I don't know whick to ask for? Augmenting causes rages as an 18 month old, amoxicillin isn't very strong, zithro. may not have treated the strep but goes after lyme but can provide some unknown type of immunomdulaton, or what else???....

 

I would appreciate your input.

Kim

[LNN]

There's no single "best" abx - every individual seems to respond differently. Most lyme patients use combos of abx, not just one. If you're worried about lyme, I'd pursue lyme testing rather than worrying about using any particular abx.

 

I know it's got to be terrifying to lose your son twice. But you know you can get him back. There are some good things to read under the helpful threads section that may help.

[MichaelTampa]

Beyond the helpful threads here, I want to point out that some think there is a huge link between autism and lyme, in case you had not heard. Dr. Klinghardt has stated that 90% of his autism patients have lyme. There is also www.lymeinducedautism.com that would probably be a worthwhile look.

[NancyD]

Definitely a link in my DD's case. The key is to treat the underlying infections and also figure out WHY your child is susceptible to these underlying infections so you can correct it (e.g., does child have a MTHFR and/or COMT mutation?).

 

Today you would never guess that my DD16 was ever diagnosed with autism as a young child. Thanks to abx and other integrative treatments she has no remaining signs. Furthermore, PANDAS is in its longest remission (2 years and counting) and Lyme/Bartonella/MycoP seems to be under control. We are now able to focus on the underlying methylation problems that most likely led to her susceptibility of getting one infection after another. We are still trying to figure out what is causing the high anxiety/OCD (right now my best guess is high glutamate and low GABA caused by the methylation problems)..

 

Once you start to treat the underlying infections (Lyme, PANDAS, other TBIs, viral infections, etc.) I think you'll begin to see the ASD symptoms dissipate.

 

Beyond the helpful threads here, I want to point out that some think there is a huge link between autism and lyme, in case you had not heard. Dr. Klinghardt has stated that 90% of his autism patients have lyme. There is also www.lymeinducedautism.com that would probably be a worthwhile look.

[Suzan]

Today you would never guess that my DD16 was ever diagnosed with autism as a young child. Thanks to abx and other integrative treatments she has no remaining signs. Furthermore, PANDAS is in its longest remission (2 years and counting) and Lyme/Bartonella/MycoP seems to be under control. We are now able to focus on the underlying methylation problems that most likely led to her susceptibility of getting one infection after another. We are still trying to figure out what is causing the high anxiety/OCD (right now my best guess is high glutamate and low GABA caused by the methylation problems)..

 

 

Nancy - Totally amazing and congratulations! Your dd always reminds me of my dd10. Her primary remaining symptom is high anxiety/ocd too. We are treating with Kavinase but we need to find the next piece of the puzzle. She just had a bladder infection but otherwise, she has been infection free for at least a year and did not get strep this year.

 

Kim - when my girls would have amox when they were younger for sinus, ear, etc. infections, it would do nothing. But it was a primary abx we used for lyme. Along with the combo of zithromax and flagyl, it helped us a lot. My dd10 reacted very strongly to augmentin (before lyme diagnosis) and I believe it was a herx reaction. The zith did help her maintain and feel better (keeping the strep under control) but her lyme symptoms were not getting better until we added the other abx and worked through the herxing. Sounds like lyme could be a possibility. Good thing to rule out anyway. For prophylactic , I like zithromax the best, but we used highish doses daily to help her (500mg daily when she was 8 and 70 lbs).

 

 

Susan