MamaOnAMission

The lyme/bartonella treatments if VERY tough. She is so aggressive. Doctor suggests Seroquel. Is there anything else you can suggest that has worked. She is currently on lamictal. Does nothing.

is there a difference between regular stretch marks and ones caused from bartonella?

what do you mean that "azith is not a lone treatment for lyme??"

I hear you. They really don't have control, but even mother Theresa would lose it at times in our situation!!!

My kid is always confused and gets yelled at so much. Kills me!!! Then when I try new meds, confusion is worse and people get even madder at her and its not her fault. Very sad! Can u relate?

We do follow up with one our doctors (not LLMD) and if you use Skype, insurance covers it lots of times. Sorry I don't know about LLMD's but wanted to give this information!

We do follow up with one our doctors (not LLMD) and if you use Skype, insurance covers it lots of times. Sorry I don't know about LLMD's but wanted to give this information!

My child is on lamictal and it does not help to calm brain down really. Is topomax similiar to lamicat in the way it works. If it is, I probably won't try it. Instead I may up her seroquel instead. Any advice is helpful. Thanks

Great suggestions. I will try kids culturelle.. I am assuming that it does not have strep strain, right?

I am hoping that she tolerates them better since she is kind of stable on the doryx and bactrim. I have several bottle of probiotics handy. I have types of custom probiotics, cultuelle and new chapter all flora. Any suggestions? Is one more gentler or tolerated by our children? I am looking at strains but not too knowledgeable about them.

When you use azith. And bactrim are you only addressing Bart.???? Or is it helping Lyme too? Thanks

Looking through threads and I dont see Doryx being tried by anyone. If you tried it, what was it for? Lyme??? Bart.?????

I am upping the Bactrim and Doryx slowly and my child is looking quite good during the day and not snapping with racing brain and confusion. I am seeing this combination really calm down her brain. Hallucinations and distorted thinking are much better! She showered and brushed her teeth. Wow! Sleep is still not good. She is wide awake as I type this (3am). When she was on the Bactrim and Minocycline I saw sleep get better but she was not looking good during the day. She was screaming at relatives, very uninhibited OCD and agitation was really bad, and not getting better after months on the stuff. Interesting because I have read that minocycline and doryx are similar. Wonder why they are working so differently on her??? BTW...I have heard that Doryx has many more side effects than mino and the other antibiotics. At this point I can't worry about it, but was wondering if anyone has been on the doryx and what they experience.

Sooo many tests were done. Alcat, Eliza etc.....(tons of tests and specialists - but not a Dan Dr.) worked on diet and gut. She stuck with diets like a trooper. She's amazing! Doctor thinks once we get lyme/bart. under control that she will begin to tolerate some meds. and supplements and I think he is right because I am having some success the last week. THANK GOD! She is currently on the Bacrtim and Doryx and showing lots of improvement!!! During the day the hallucinations are less. Agitation and OCD much better. Sleep is still not good. Bug eyes till 3am. On the Bactrim and Minocycline sleep was better - but during the day she was "stuck" in her world with lots of OCD and distorted thinking. Not sure what LLMD will do. I wonder if you can add some Mino. to the bactrim and doryx?????

Sooo many tests were done. Alcat, Eliza etc.....(tons of tests and specialists - but not a Dan Dr.) worked on diet and gut. She stuck with diets like a trooper. She's amazing! Doctor thinks once we get lyme/bart. under control that she will begin to tolerate some meds. and supplements and I think he is right because I am having some success the last week. THANK GOD! She is currently on the Bacrtim and Doryx and showing lots of improvement!!! During the day the hallucinations are less. Agitation and OCD much better. Sleep is still not good. Bug eyes till 3am. On the Bactrim and Minocycline sleep was better - but during the day she was "stuck" in her world with lots of OCD and distorted thinking. Not sure what LLMD will do. I wonder if you can add some Mino. to the bactrim and doryx?????

I don't mind you being blunt at all. I know you care....but I just have to kind of paint the picture a bit better. All of the doctors have said the same thing to me until I video tape what happens to her on some of this stuff, and they tell me to discontinue these things. Probiotics being one of the worst. I don't even want to write down what happens to her on the board. And this wierd reaction NEVER STOPS. We don't know why this happens on everyting we try. I keep trying and trying and I will try again. She screams her head off and can't catch her breath when we give motrin. It is a living ###### and nobody can tell us why her little body can not even take a 1/2 motrin. If I give 1 mg. of melatonin to close to tylenol it is like an explosion goes off in her head and she starts to hiss and her face contorts. Believe me I never give up trying and searching and pleading for help!! I am better off with pills at this point. I have given her all kinds of concoctions for 12 years and she was a trooper but is done now. Pills are my best bet. What do you suggest? as far as pills for detox?

S&S - what in your opinion is the most gentle detox? Also, how come LLMD never talks about detox??? :0(

I tried probiotics 5 times and each time she was too out of control. It was not good. I hear others that can't handle probiotics. I will try one of the other things you mentioned. Thanks!

i am afraid to add anything since she flips on EVERYTHING i give! i can get charcoal into her but i know that is not enough!!!

Seems like when I start an antibiotic she always gets sick. I have researced a sore throat can happen with Bactrim. Seems it can be a side effect of so many drugs though. Just wondering if anyone had this happen with Bactrim???? Don't remember it happening last time I tried it.

My child is 13 and diagnosed with Lyme/Bart., and that is why we are trying the Doryx/Bactrim combination. She has a Cam Kinase of 166 and at first we thought PANDAS, but she has no titers for that. One doctor still thinks its possible to have PANDAS. Anyway...I have a test result that says Lyme/Bart. so I am treating for that, but I was hoping the combinattion that I am giving my daughter may also take care of PANDAS just in case??? Please give me your feed back. Thanks!

Bill - how come your giving 4 things for bartonella? Our LLMD told us that only two antibiotics are needed to treat bartonella.

We are started bactrim and doryx for the bartonella. I don't see OCD getting any worse but I see her getting stuck on one thought. For example, her friend is an overeater and my girl is worried that she is going to get overweight and die. She keeps bringing up the wieght thing to this friend and it does not stop. Prozac took away her OCD when we were on it, but it does not take away these certain types of thoughts and confusion. Another example is she keeps telling people not to copy her and she never stops. Kids can't take it. Anyway....my question is: What helps to calm these kids down while going through this treatment. We tried seroquel but it did not stop these racing confusing thoughts that she gets. Not sure what to do to make it easier on her and so that she doesn't lose yet ANOTHER friend. Any suggestions?

when my girl was on bactrim by itself, she was mean and sleep did not improve. When I added minocycline to doryx to it...she slept. Our LLMD said that 2 antibiotics are needed for bactrim and that certainly seems to work in our case. With sleep anyway. Lots of other symptoms are still present but we are at the beginning with this.

Please whine when you need to. Our are all in the same boat!!! Whine to me privately if you feel better that way!!! :-)