Re: Re: where to start?

January 24, 2011

Thank you for answering. My son has been having what he calls "spasms" in his arms and across his chest for about 4 years. My son is very verbal but has a hard time explaining things. What we can get from him is that it isn't actually muscle spasms but more like chills running down his arms. He has actually puked from this. For the first time he had an episode where he couldn't stop shaking. I did not see this. He told me after the fact. These "spasms" usually happen upon awakening, even if napping in the car while traveling. He has had some after being awake for a while but the are prevalent upon awakening.

We have been to every kind of doc you can imagine. He has tremors and anxiety so they want to attribute it to those two things. As a parent you know and we know it is different. Even now when his anxiety has been minimal he still has them. The really weird thing is they stopped while taking long term Bactrim ( for about 3 months) but when Amoxicillin was added they came back. Now they seem to be cyclical. It sounds crazy but around the full moon and shortly thereafter they are worse.

I am thinking that he is not being treated aggressively enough for the Babesia. I will check on Mepron. I know Babesia is a tough one. My son's tantrums (as an adult they are more like verbal rantings) are minimal now with the Bactrim and he is much more social. We are still looking to improve that. We have just started on this road and I could really use some good info on Natural products, etc to add to his protocol. Can you recommend or point me in the right direction for info?

We have not tested for parasites or yeast. What lab do you use for that?

Are there any chat rooms that you frequent that have good info?

Thanks,

Sue

Re: where to start?

What symptoms are you still seeing?My son had amazing changes on mepron for babesia. My son also does well socially on bactrim. We never had success with amoxicillin, but my son does well on augmentin, it eliminates tantrums and OCD.Have you tested for parasites and yeast?Caryn>> Hi I am new here and fairly new to the Lyme/Autism connection.Unfortunately my son is no longer a child. He is 26, high functioning but with much room for improvement. > > First of all this is the second group I have joined this week and I have to say I have never been active on any of these places till now. I don't really understand how they work so please bear with me.> > I have for years tried to tell the drs that my son did better emotionally and in other ways when he was taking Bactrim.He has lots of sinus infections and always did better while on the antibiotic. They did not listen. Finally a Dr suggested testing for Lyme disease. He tested positive for Babesia and Borrelia. The Dr said since the Bactrim seems to quell his very high anxiety he probably also has Bartonella. > > He has been having neurological symptoms which led to this testing. He is on Bactrim and Amoxicillian. I feel this isn't enough and will not totally take care of things. I know how controversial the treatment of Lyme disease is so I am wondering what you all are doing for your children? I live in South Central PA. Is there anyone nearby who has some possible good contacts in this area?> > Thanks so much!!>

January 24, 2011

No, I have an ILAD Dr but he isn't making the connection with autism and only treating with 2 antibiotics. Does anyone know where I can get info on a good dr in south central pa or close by? I know you can not post names and I really understand. Is there a list someplace?

I totally agree with the parasite theory I am just unsure what protocol to use. He is taking vitamin D, C, B12 and probiotics.

Re: where to start?

Just wanted to chim in, with the comment you mention, worse around full moon - and afterwards. Oh that makes me think Parasites. It almost sounds like a good lengthy parasite protocol would be good to do. Then to the antibiotics and Mepron afterwards.My son has had a odd cough/ gag when eating or even drinking water., this has goneon for years! Since he finished the parasite protocol, no more cough/ gagging. Its sobizzare how all this stuff effects our kids. My son also has tremors in his feet when sitting, so he is not done. What supplements does he take?Do you have a DR to work with you?Allie> >> > Hi I am new here and fairly new to the Lyme/Autism connection.Unfortunately my son is no longer a child. He is 26, high functioning but with much room for improvement. > > > > First of all this is the second group I have joined this week and I have to say I have never been active on any of these places till now. I don't really understand how they work so please bear with me.> > > > I have for years tried to tell the drs that my son did better emotionally and in other ways when he was taking Bactrim.He has lots of sinus infections and always did better while on the antibiotic. They did not listen. Finally a Dr suggested testing for Lyme disease. He tested positive for Babesia and Borrelia. The Dr said since the Bactrim seems to quell his very high anxiety he probably also has Bartonella. > > > > He has been having neurological symptoms which led to this testing. He is on Bactrim and Amoxicillian. I feel this isn't enough and will not totally take care of things. I know how controversial the treatment of Lyme disease is so I am wondering what you all are doing for your children? I live in South Central PA. Is there anyone nearby who has some possible good contacts in this area?> > > > Thanks so much!!> >>

January 24, 2011

Thank you . I am going to have to make a list of these things and see where to start. I know all about herxing as I have Lyme and other things. I am on Bactrim and Hydroxychloroquine. We see different drs for "long story" reasons. Will explain some day.

My son has battled extreme anxiety, panic attacks and severe depression for years. No one would ever listen to me about the antibiotics. it is frustrating but hopefully we can get on the right track. Things are already better with what he is taking. He handles stress situations that would send him off the deep end pretty well now. I am so thankful for the progress that has been made.

Re: where to start?

Sue,

One thing you can do for babesia is to start Arteminisin (maybe start at 100mg divided in 2 doses...decrease it if he herxes (usually flu like for more than 2 days) or Artemesia. We've used both with good success. Neem might be a gentler way to start...we really liked that one. Vitacost has both and Hepapro has a very good artemesia.

the other drugs that are effective for babs is mepron and malarone and some docs use clindamycin.

bartonella is very ugly....babesia can bring on the same rages/panic/depression as well but babesia rages can be more severe more cyclical (at least in my house).

HTH a little.

lisa

January 24, 2011

with you saying it cycles it makes me think 2 things, parasites or strep (PANDAS) as it fits with uncontrolable body movement and it would also go away with antibioitcs it's susptable to, its also a coinfection to lyme