trintiybella

I know minocyclline helps inflammation but was wondering if it is ever used alone for lyme or PANDAS. We have used it in combination with bactrim for bartonella too, which made my child try to scratch her face off daily for months and month. When we drop the bactrim she seems to sleep and be much better. Was wondering if it is helping with inflammation or perhaps the lyme part of her problems. Thanks

I emptied my mailbox mayzoo. We have been in this place for 3 years, and have only checked mold through inspector. He said it was fine, but I know there tests are not good enough. Not sure its mold since the first 2 years I was fine. I will stll look into it. I spent thousands on mold in my previous home and not sure I want to put that kind of money out again. Is there something I can do that isn't going to break me?

She is losing lots of weight. Thinks she is fat :0(

gannie47 - did they exray or do MRI's to rule anything else out first? I don't blame you for swallowing that much tylenol. The pain is awful. Lyme and bart. treatment were not helping after 2 years and I am not convinced this head ache is from that. Not sure though. The pain NEVER subsides. So far 4 extra strength tylenol have done nothing. Do you think yours was related to bulging discs?

This head ache does not go away with lyme treatment or any drug the doctor has tried. I had 2 MRI's and they are fine. The pain is in the pack of my head by my neck and really bad by temples. Feels like someone poured acid in my head. Or their is a vice getting tighter and tighter around temples. Neurologist wants me in to discuss pain management medicines but I am wondering if there are any other tests that may tell me something. The MRI would not have showed a pincer nerve, would it? Can you give me some suggestions. The pain gets worse and worse, and I am a bit worried now. They are in the middle of the night too. Saw ENT also. Sorry so this is so choppy.

I am seeing great results from BWO even though she tests negative for parasites. I am just not sure if I am doing the parasite treatment correctly? Any suggestions?

EEG, Spect and blood work all came back fine @ NYU. She has been on bactrim and mino, and other combinations for lyme & baronella for years and every time she is on them, she gets worse and just spends 24/7 picking moles off her body and staring in the mirror because she feels she is so ugly, not to mention she is much more agitated and hard to live with. I have seen sleep (SEVERE INSOMNIA) from giving walnut oil and I have seen her poop (she has SEVERE constipation) from giving vancomycen. This tells me her gut is a mess and I need some real work in this area. We had to take a break from antibiotics for the moment, and reintroduce them once we get her pooping and sleeping, which I believe we will get once we work on her gut. Now I have to figure out what to go after. Do I go after the parasites first or the clostridia? I have a phone consult with S.S. to help me figure this out, but if you have any tips, I am all ears! Thanks

can i give this stuff more than the 10 days that they recommend on the bottle. Also...I am giving 10 drops at night to 14 year old. Is that too much??? thanks

How many capsules would you give for trying to treat clostridia? Thanks

I will talk to Dr. N. about it at next appointment. Thanks.

Has anyone ever stopped the abx. to work on repairing the gut? Doctor thinks clostridia is preventing her from getting better. Is it too much of a set back to do this? Thnaks

I find this interesting....I was having super bad head aches. Had several MRI'S and they saw nothing. At the time of these head aches, my Trichotillomania got really bad. I went to ENT and he saw that my passage way was crooked in nose and gave me steroid nose spray. Head ache went away and so did Trichotillomania. I am wondering if there is some inflammation in my brain that was being helped by steroid or was it all just because of an inflamed nose???? I have many of the same symptoms my child has, just not as severe. I am always trying to find out about myself, so I can help her too. Just wanted to share.

I don't have a follow up with Dr. N. until Feb. 26th. I need to keep trying to get her to poop until then. The G.I. specialists told me to give magnesium citrate or miralax. They don't work on her.

Black walnut, and oil or oregano made my girl poop. Black walnut oil also helped with severe insomnia. (she has severe constipation, with rectal prolapse twice) I am trying to figure out if it is yeast or parasites that is the problem. Diflucan did not make her poop, but made her very focused. Too focused. Could not stop her obsessive behaviors. She is on 100mg of amphotecerin 3x's p/d. I was thinking that was enough to take care of yeast, so my guess is that it parasites i am dealing with. What are your thoughts. Thanks! I am just so happy she is poooping and want to keep going in that direction. This is what she is taking: 11pm 50mg Minocycline 1/2 Bactrim 100mg Ampho D3 5PM 50mg Minocycline 800mg Bactrim 100mg Amph 1 Oil of Oregano 10PM 1 Culturelle 2 1/2 Custom probiotics 3mg. Melatonin 100 Ampho 6mg. Seroquel

I am trying to figure out why when I start/stop culturelle, she poops. Seems like other probiotics don't do this. Thanks

I believe all her blood work is in already. The other two tests were EEG and Spect. They shouldn't take two weeks for results, right?

We got through all the tests at the hospital. It was super tough. She was a mess and I thought that was a good thing, so the nurses could see her at her worse but it back fired on me! She sceamed if anyone came near her, so getting text done was almost impossible. The nurses also thought she was a brat and that I was just a nervous parent. Same old story. I tried explaining but gave up! I am dying to get the results from these tests! How much of a pain should I be, as far as bugging the office for a follow up appointment? I called once and left message. Hard to restrain myself!

Phew! Their doing SPECT in evening. I was told it would be done over weekend, but I was given wrong information. Better later than never, I guess. Just keeping her calm for this long is tough! Especially when nurses really don't get it at all! Their very sweet but when I explain her symptoms, they look at me like I am a nut!

Did you stop your sons medications before hand?

Did the doctor suggest he be sedated, and be off all meds? Our doctor never mentioned any of this.

She got through EEG. Spect is scheduled for tomorrow. She's getting severe agitation and trying to run out of hospital while pulling electrodes off!!! If she can't stop herself and we have to leave, can SPECT scan be done out patient somewhere at another time?????

That is so awesome and I completely understand. My girl showered in her shower too, that she has always stayed away from because she was so claustrophobic! Made my day???

Since a baby, on of her main symptoms is she screams and gets REALLY aggressive when I start a medication or supplement and then she scream and gets aggressive when I stop the medication. It's like an explosion goes off in her head and she can not control herself. My question to you is....would it be a good idea to decrease her bactrim to create that scenario to see if anything helpful shows up on EEG that she is currently having? All previous EEG's come back abnormal and prone to seizures but no seizures! Dr. N. is not around to ask but the attending physician is. Not sure she will even get what I am talking about thought. What would you do???? I want to learn as much as possible on this hospital stay!!! Thanks!

What have you tried to help with eating disorder? My girl won't eat. She thinks she's fat and she's trying to get a "thigh gap" Have you heard of "THAT"? She has had this distorted body image since she could talk.

Would you recommend this or grapefruit seed extract for killing yeast? Thanks