Gabapentin (Neurotin) & Lyme

[Iowadawn]

All my lyme & PANDAS moms!

 

ANy experience out there with gabapentin? Our son was just taken off all his psych meds and going to be put on gabapentin. We have been having a heck of a time. He is in the hospital right now (AGAIN--really STILL). The psych is looking into getting IVIG for him. (This is a first for the doc! Hope it changes the way PANDAS is treated in Iowa). He has consulted w/ our lyme doc and is working with the rheumy dept at the hospital to pull it off. Say a prayer. Evan could be-what I would guess- the first hd IVIG done in Iowa for treatment of these problems. Take this, mr. Infectious Disease Doc across town!

 

What I have heard about this drug has been good. Just wondering about your experience. It is a mild anti-seizure drug and is often used for nerve pain. Settles down the brain what I have been told.

 

Dawn

[Iowadawn]

OK--I accidentally put this on the PANDAS forum. How do you move it to Lyme? Since my boy is PANDAS, too, I still would appreciate comments. Dawn

[NancyD]

My DD did not do well on gabapentin. But then again, she never did well on any of the 30 or 40 different psyche meds we tried over the past 11 years. We tried gabapentin long after she was diagnosed with PANDAS but before she was diagnosed with Lyme. Not sure when she contracted Lyme (in the past year or if it was congenital). We had GREAT success twice with HD IVIg however the 10-week recovery period each time was difficult. We are now treating the Lyme for a few months before we do another round of IVIg. I have sworn off all psyche meds FOREVER.

[wornoutmom]

Dawn - I took this drug for a while for fibromyalgia pain. It worked very well, but man did it make me foggy. My kids used to call it my "loopy" pill because I just couldn't think straight on it. Had to discontinue due to this side effect. Hope it goes better for your kiddo!

[sf_mom]

Side note: Wornoutmom, my fibromyalgia was misdiagnosed and truly have LD. Treatment is helping tremendously. Have you considered testing yourself via Igenex (basic WB $260.00) or another speciality lab..

 

-Wendy

Edited October 25, 2010 by SF Mom

[sf_mom]

My girlfriend's son was prescribed gabapentin because he had the fear choking post hdIVIG and wouldn't take his medication. Their use was limited so I'm not sure if it helped..... He began taking his medication again so they stopped.

 

I also wanted to caution against another hdIVIG at this time and give the Lyme protocol an opportunity to work and for things to settle down. I am hearing from way too many individuals off forum with 'now' a Lyme diagnoses the the back to back hdIVIGs have not been helpful and are actually making things worse 'stirring up'. Because hdIVIG has not been used for the treatment of Lyme its effectiveness is not yet known by any Dr. During the live webcast of ILADS conference Dr. H talked about the ability to create Cytokines storm with the Jarrish-Herxheimer Response which can last 12 to 15 months if the individual is blasted too hard on the front end. I am not sure this is what is going on with the back to back hdIVIG treatments but I can ask his opinion tomorrow. We are seeing him with all three kids. I do know many that are waiting it out are seeing true resolution of symptoms with treatment..... REMEMBER, they have helped 100s of children get better without hdIVIG and presented identically to PANDAS in the past.

 

You can purchase a DVD from the conference on this topic. I have not seen it yet.

 

'CD Plenary Session The Role of Cytokines in the Jarrish-Herxheimer Response - Norton Fishman, MD - Location: Newport Ballroom III,IV,V'

 

I don't want to add another layer of worry but I can definitely put you in contact with individuals that felt the treatments were not helpful. As you know, we did do three hdIVIGS and DID NOT HAVE a negative experience.

Edited October 25, 2010 by SF Mom

[cobbiemommy]

Ds was placed on neurontin (gabapentin) just three weeks ago. He seems like a different kid in many ways-all for the better. He was also put on bicillin shots at the same time, and Zoloft as well. We cannot really untangle which one thing made all of the difference for him. He was put on gabapentin for possible seizures as well. He was first diagnosed as Pandas, but we now know it is Lyme and Pandas. He still had strep in his sinus cavitites after all that time. Good luck.

Cobbie

[wornoutmom]

wendy:

 

Yes, I have thought about it and it's on the agenda to talk to my doc about. Waiting to get ds' Igenex back first - which they said should be by Thursday. I've been mulling the possibility over that I need to rule out Lyme for myself for a while, but as many moms here do, I tend to neglect my own health when my son is struggling. Thanks for mentioning this though

 

Side note: Wornoutmom, my fibromyalgia was misdiagnosed and truly have LD. Treatment is helping tremendously. Have you considered testing yourself via Igenex (basic WB $260.00) or another speciality lab..

 

-Wendy

[Suzan]

I took gabapentin for nerve pain when I had the pain from my parsonage turner syndrome. It worked very well in reducing the pain that the hydrocodone could not touch. It made me very sleepy though if I took so much. It made me sleepy so if your brain needed settling down, I imagine that it could work. I did not have any negative side effects.

 

Susan

[sf_mom]

I'm so glad its on your agenda. How long do you think you've had symptoms Fibro? Believe me, I know how it goes having a sick kid and that being the focus. I'd be happy to send you my copy of 'Under Your Skin' if you promise to send it on to another PANDAS/Lyme family after you are done (just PM your address). I'm positive you will test after seeing the documentary. Plus, I plan to bug anyone on the forum who admits they suffer from MS, Fibro, CFS, Chrone's, etc. etc. etc. to test for Lyme.

 

I'll be anxiously awaiting your son's results too.

 

-Wendy

Edited October 26, 2010 by SF Mom

[sf_mom]

Dawn: I wanted to let you know I spoke with our Dr. about the use of IVIG and Lyme. He said it is very important to start treating the Lyme first. I assumed this to mean you needed to get beyond some of the 'die-off' and treat the co-infections. He felt it is very possible you could create an extended Herx by treating too aggressively with the hdIVIG and repeat treatments. He does use IVIG but said timing in treatment process is critical. Because we weren't specifically addressing my children and talking more about the treatment of PANDAS he was hesitant to map out when its used, what dose and for what type of Lyme individual.

 

I am hoping this helps a little.... and pray you are seeing some improvement for your son.

 

-Wendy