MamaOnAMission

rowingmom - what is the mino. and azith. treating? is it the bartonella?

do you think the SEVERE racing thoughts and SEVERE confusion is more Bartonella or more of the Lyme?

From what i understand, insurance won't cover the IVIG if you have lyme/bartonella? Or if you have a Cam Kinase of 166? Any other tricks to getting it covered?

S&S - how are you. I know you have a tough situation. Just thinking of you....

The doctor we currently see if great but I have a very hard time understanding him. Any other suggestions in Northern NJ or Conneticut? Thanks!

I know doryx and bactrim are good for lyme but have you heard of that combination for bartonella too?

I don't hear of many using Bactrim and Minocyline for Bartonella??? Has anyone tried this combination?

we tried mino. and bactrim. she was pretty mean and ocd got really bad with this. we tried mino. and cipro. and it did nothing but make her VERY aggressive. what other combos are there for lyme/bartonaella?

we tried mino. and bactrim. she was pretty mean and ocd got really bad with this. we tried mino. and cipro. and it did nothing but make her VERY aggressive. what other combos are there for lyme/bartonaella?

Actually she is NOT sleeping. She is on Doryx and her confusion is better but it does not help severe insomnia. The mino. and bactrim helped her to get to sleep but she was REALLY mean on it. Our PANDAS specialist says her PANDAS left her vulnerable to Lyme/Bart. She has a Cam kinase of 166 but titers are fine. Then her lyme/bart. test comes back possitive then negative. Always changing. Not accurate at all. So I don't know what this girl has. All I know is the lyme/bart. treatment seems to not make her as wild crazy as PANDAS antibiotics. It's not die off either. It never goes away. Ugh! Do some of the antibiotics that treat Lyme/Bart. also treat PANDAS? I think I heard that doxycycline works on both.

I am truly feeling for you rowing mom. I was wondering about the inflammation thing too. I don't think so in our case. It is so dang confusion. I had her on full dose of the mino and bactrim and she was starting to sleep but OCD was horrendous. She was hoping around on squares on the floor all day long. Counting things as she passed. She was a mess, but she started to sleep. So do I want her to sleep or do I want her to have severe OCD where she can't walk from point A to point B without it taking an hour to do it because of the OCD. :0( And the biggest problem is that nobody can tell if it's PANDAS or Lyme/Bartonella!!! I want to to do the IVIG but insurance does not cover it. It is so sad. If psych. drug worked and didn't make her worse, I wold use them.

My child has racing thoughts and tons of confusion. She holds it together for awhile and then she snaps. I believe the thoughts and confusion get too much and she just can't control herself. It is very unsettling because she comes out of left field and flips and scares you to death with her confusion and racing thoughts. You just never know when it will happen. Anyone relate?

She is not getting violent and flipping out with the doryx. It seems like it is helping with SEVERE confusion and racing thoughts. Her confusioin was so severe that she would constantly ask "am I human?" and she REALLY DID NOT KNOW!!! We are at a very low dose and it has not helped with sleep at all though. Is it possible that after awhile she may be able to sleep with this stuff? She has never slept in her life. We have tried so many drugs. Her brain was on fire (her words and she hallucinated all night long) Mino. and bactrim combo helped her sleep but didn't touch the severe OCD and it also made her very aggressive and mean with relatives. But when she finally fell asleep after all of her rituals, she did sleep, which she never has in the past. I am not sure what direction to go. I guess keep upping the doryx and see what happens. Will talk to doc, but wanted your experiences. Thanks

Hi- just trying to help, here is my .02 cents. I have insomnia - I don't think any antibiotic is going to help me with it while I am taking it. The means to the ends- getting rid of Lyme/Bart, is the underlying cause (Bartonella especially, I believe.) Doryx and Bactrim sound like a good oral combo for Lyme. Is she taking any sleep aids? My daughter only needs a little melatonin, I, however, need stronger- Ambien right now, in the past Trazadone. I hear Klonopin helps many. Sometimes I need a 1/2 Valium when I constant wake in the middle of the night. Is her treating Dr. helping?

Hi- just trying to help, here is my .02 cents. I have insomnia - I don't think any antibiotic is going to help me with it while I am taking it. The means to the ends- getting rid of Lyme/Bart, is the underlying cause (Bartonella especially, I believe.) Doryx and Bactrim sound like a good oral combo for Lyme. Is she taking any sleep aids? My daughter only needs a little melatonin, I, however, need stronger- Ambien right now, in the past Trazadone. I hear Klonopin helps many. Sometimes I need a 1/2 Valium when I constant wake in the middle of the night. Is her treating Dr. helping?

What other drugs are used for Lyme besides Doxy. My sister for sure has Lyme but does not want to go on Doxy cause of weight gain. We are going to doctors now and they will treat her but I need suggestions first. Thanks

the doryx helps with severe confusion but is not helping severe insomnia. i was wondering if adding bactrim in would help since at one time she was on mino and bactrim and it helped with sleep but it made her way too aggressive so we took her off. anyone have any experience with doryx???? and has it helped with sleep?

does anyone know if the antibiotic Doryx works for PANDAS?

None. Things continue to get worse and worse with no break in sight. Sorry to be a downer but have no body else to vent to. AND I rarely get a response to ANY question I post. Guess people are sick of nothing working for us!!!!

Have a few questions. Would appreciate some help. Thanks!!

My doctor is treating my child with Niacin for low stomach acid. He thinks she is not breaking down her foods and her brain is being poisoned by the toxins, thus resulting in like a zombie state. My question is? Does Niacin work the same way that enzymes, because I have tried enzymes in the past and did not have good results. Thanks.

i am just being treated by my intern at this point. my child sees dr. j. in i can't afford him for myself. my intern only gives me doxy. ugh! i wonder if being on doxy for 3 months has done any good at all!!!

i am just finishing up a few months of doxy. as soon as i stop this stuff i can't get off the couch again. I am confused and exhausted as usually and can't function. I am being treated by my intern. Was he suppose to have me on flagyl with the doxy to bust cysts or something like that? I am just not getting better and need to be healthy for my sick child. While on doxy I feel great. Can you give me some advice. Thanks

S&S...how is it going?