well, well, well

[mandyknowles]

So, here we are planning a trip in May to CT to see Dr J. oldest has a followup and the other two are new patients. Middle child with + WB and youngest negative, but they want to see him because there are 5 in the family with a positive test....That = lots of money! Anyway, last month the oldest had a bad flair up and they took her off meds for a week...well,now we are in another flair up to where she is jerking constantly. She was also diagnosed with Pandas, and her neuro gave her clonadine(sp) and only told me to give it when needed. So, we have been doing it for the past two nights, and it seems to help at night but she is still jerking pretty bad through out the day...I am completely going insane with this mess..how can one have such jerks like seizures but have nothing to prove its messing with her brain? i mean, dont get me wrong, i am glad its not hurting her other organs so far but %&*!...it would be nice to have a few answers. It sucks to be so far away from the dr and have this crap going on, where in Oklahoma they just dont think we need more meds or they need to be in a mental institution. It makes me want to move closer to a dr who will believe us on this crap. Ok great venting lol

[lyme_mom]

I hear you and I have a lot of sympathy for you. Dr J is excellent. A couple years ago when I told a llmd's wife that we were taking our son to Dr Jones she said "he will thank you someday." Well today my son is well and i wondered if that day would ever come many times. It is amazing how much can be handled long distance when you have an office like Dr Jones' that has really seen it all. It is so expensive too but at least it won't drag on for years and years because of what you are doing by going to an expert. Perhaps there is a holistic practitioner near you who could be of help like a naturopath, Acupuncturist or creative chiropractor even if they cant treat the lyme. We have a lot of options in MD and I tried a lot of things to help with symptoms and balancing the body. For example, I had the chiro check my son and the remaining headaches he had went away after he was adjusted. I tried Art testing for blockages in the body a la klinghardt and many other things. I think it all helped a little. Other ideas are reiki or cranial sacral massage, infrared sauna for detox, etc. You never know what a good practitioner can do to help so I always ran whatever symptoms he had by whomever we saw because sometimes you might be surprised who could help. Hang in there -u r not alone.

[mandyknowles]

I hear you and I have a lot of sympathy for you. Dr J is excellent. A couple years ago when I told a llmd's wife that we were taking our son to Dr Jones she said "he will thank you someday." Well today my son is well and i wondered if that day would ever come many times. It is amazing how much can be handled long distance when you have an office like Dr Jones' that has really seen it all. It is so expensive too but at least it won't drag on for years and years because of what you are doing by going to an expert. Perhaps there is a holistic practitioner near you who could be of help like a naturopath, Acupuncturist or creative chiropractor even if they cant treat the lyme. We have a lot of options in MD and I tried a lot of things to help with symptoms and balancing the body. For example, I had the chiro check my son and the remaining headaches he had went away after he was adjusted. I tried Art testing for blockages in the body a la klinghardt and many other things. I think it all helped a little. Other ideas are reiki or cranial sacral massage, infrared sauna for detox, etc. You never know what a good practitioner can do to help so I always ran whatever symptoms he had by whomever we saw because sometimes you might be surprised who could help. Hang in there -u r not alone.

 

Yea there is a chiropractor here that alot of people go to and they say he is a healer. I am thinking of trying to get her in to see him soon. He may be able to help her alot with the pain and stuff.

 

 

Dr Jones has been a God send to us as well. When we first went to him she was using a walker/wheelchair and her legs hurt so badly. A year later she is doing much better. Of course she has setbacks and she has the heart palpitations but we have dealt with that for so long its like a daily routine. I breath in her mouth she jerks a minute and we go on about our business. This year she actually got to hunt and carry her own crossbow and rifle, which is amazing. Last hunting season she couldnt even sit up on her own. So yea she has come a long long way from first getting sick.