Newly diagnosed for Lyme - after PEX for PANDAS

[philamom]

Oh Nancy, that is such a long journey...I hope the light at the end of the tunnel is closer than you think! What a strong daughter you have!!

 

And yes, I can understand her freaking out...I will be a nervous wreck next time I have to remove a tick. It's probably best someone else did remove it anyhow (hopefully correctly).

[Iowadawn]

You should head over to LYME induced Autism Website!!! You will find you are not alone. Our twins had/have spectrum issues at 2.... we got lucky and put them on antibiotics last year and things are reversing. http://www.lymeinducedautism.com/

 

Have you ever been diagnosed is CFS, MS, Fibro, Lupus or any odd auto-immune issues yourself? Any weird symptoms throughout your life that have been ignored due to the focus on your son/children?

 

-Wendy

 

 

The LLMD we are seeing has treated Lyme induced autism with IVIG. I asked him about IVIG timing & he hadn't had problems like what you explained. Still waiting for approval!!

 

Dawn

[sf_mom]

Dawn sorry if I caused additional worry. Praying it works like a charm for your son and glad you got a supportive perspective from your LLMD. Is he still on the Mepron and how is he doing?

[cobbiemommy]

Has anyone has a child who was diagnosed with autism, ocd, odd, tourette's, adhd, PANDAS and then Lyme...what about a child like this who was treated for lyme and they recovered from all of them...?? Gotta dream ya know - keeps me from goin' wacky! :-)

 

My son was diagnosed as Aspergers with ADHD as a comorbid condition. Then we went to a DAN doc who diagnosed him as PANDAs, but did nothing to treat the strep condition. He was put on GFCF and supplements. He did not get well. Went to a different doc, tested for Lyme-ruled inconclusive. Went to Dr. K, treated for PANDAS. Much improvement for two weeks and then horrible rashes all over torso, pain, no stamina. Went to two different LLMDs-Lyme with Bartonella as coinfection, also still had strep hiding out in sinuses. Son has had Lyme for SEVEN years. He has diminished blood flow (vascilitis) to all body parts including the brain. Waiting on lab results, but she also suspects Babesia. Dear doctor promises to get my son well, that he is not autistic, just very sick. Doc is a LLMD and said that they have seen similar cases and he will get better!

Cobbie

[RNmom]

This has turned into an amazing thread! I've read it several times to make sure I take in all the helpful information.

 

I am: adding charcoal tablets at night ASAP...

... also that herbal anti-viral tx someone mentioned earlier - Sylmune I think...

... also restarted L-theanine... (he is already on melatonin, milk thistle, folic acid, Calcuim, Vit D, Vit A, magnesium, and Caprylic Acid)...

...diflucain and...

...using medical grade probiotic called VSL #3 Double strength - it is a prescription from our PA...

...other probiotics are Pearls immune alternating with Theralac...

 

I will also look into (and ask our PA about) Rifampin for the Bartonella - so glad to hear that it is ok to wait a few weeks after starting Doxy as our she is out of town next week!

 

I do trust this particular PA for her Lyme and PANDAS knowledge. She is respected by Dr. L., the PANDAS doc who treated our ds14 with plasmapheresis. In fact, quite a few of Dr. L's PANDAS patients see this particular PA for follow up on a variety of issues (such as being on long term antibiotics, etc.). She has treated lots of Lyme patients including her own son who had PANDAS and Lyme. Currently, she is teaching the docs in her group how to properly order Lyme testing and what the latest ILADS protocols are.

 

There is a Lyme literate doc (who is also a DAN doc) in our town. I took the first available appointment in early December for a 2nd opinion. BUT, I am praying that by then my son will be feeling and acting a lot better... I promise to keep the appointment anyway! :-)

 

Thanks again for all the support and help here. Please keep posting any other ideas that come to mind. All the best to all the great PANDAS / Lyme warriors out there!!

 

P.S. My ds14 is still @ 50% to 75% less anxious than he was before the Bicillin shot last Tuesday. But, this Herxheimer reaction is a strong one! Lyme treatment will not be an easy time for him I can tell...

Edited October 31, 2010 by RNmom

[MomofJacob]

Today I asked for a sign that our son would get better. Maybe reading these stories is it...I am going to the dr. on Tuesday for Mepron as per advice of a lyme dr. in BC. He believes the IGeneX lab results, as well as symptomology, leads him to believe our son has babesia.