trintiybella

Is is possible that my child can have lyme/bartonella, and have no brain inflammation. She reacts very poorly and gets worse with motrin and also turns into satan with steroids. Both of these are for brain inflammation, so if she does so horribly with them and they don't help...wouldn't that mean there is no inflammation? Thanks!

Thanks so Much EVERYONE! Means a lot to me!!!

Sorry I did not post right away because I saw that Ophelia was having such a tough time with his appointment with Dr Najjar. Didn't want him to feel worse that I went and things were moving along.,,,anyway, it was a wonderful appointment. It was the first time I didn't feel like I was pleading for someone to believe her bizarre symptoms! He told us too that based on symptoms he feels its inflammation in the brain. He spoke directly to my 14 year old to make her feel apart of the whole process, but he wasn't aware that her mind drifts and she understands very little. He's admitting her into hospital Dec. 17th for SPECT scan and more EEGS and tons of blood work. He is not convinced that there are NO seizures. He also said that the reason she's probably getting a little better is the minocycline she's on which helps brain inflammation. Not sure about that, since I had her on minocycline exclusively at one point and it didn't do much until I added the bactrim. I then tried bactrim alone without minocycline, and it did nothing without the minocycline. I'm excited to see what he comes up with. He's super nice! Thanks for asking!

I know he believes in PANDAS but is he going to give us a hard time if we tell him we are treating for bartonella and lyme? Any tips on what I should or should not say??? Thanks!

Thanks. I put some debrox drops in last night and she said the "swooshing" sound in her ears is going away.

I am giving magnesium to my child but have read it's not okay if you have bartonella. Anyone else hear this? Do not want to do anymore harm to her. Thanks!

It was the probiotics. I just need to stay at a low dose. She always gets so much worse whenever I go up on them, and it never ends. Don't think it's die-off. At least I can get some into her.

My child is going crazy, because she said it sounds like a washing machine in her ears. She keeps covering her head with pillows to stop the sound. She said it's like hearing her heart beat really loud in her ears. The only thing I did was up her probiotics. Has anyone ever had this symptom from anything they gave? Thanks!

She has had this distorted body image from the time she could speak. She use to pick teeny teeny mole off her body at 3 cause it was ugly. As she got bigger it got worse and worse. Everything about her body agitates her tremendously. If u look at her she freaks because she feels ugly. It's better with bactrim and minocycline buy still horrible!

My friends daughter has Chronic Recurrent Multifocal Osteomyelitis. Has anyone ever heard of this? She thinks it was caused by the lyme. Her child is in lots of pain and I am trying to find out what can help her. Thanks!

Yipppeeee!!!! Thrilled for you!

My child spends a lot of time staring in mirror picking her body apart. She is super agitated. I guess this is an obsessive thoughts and I am thinking about starting small dose prozac again. We tried it in the past and it made her violent, but she is now on the antibiotics and more stable. If you know of anything else that helps, please tell me. Thanks! Below is what she is currently on: 11AM 500MG Omegas 50mg Minocycline 800mg Bactrim 10ml Iron 70mg Milk Thistle 300mg Motrin 4000 UI D3 7PM 70mg Milk Thistle 50mg Fluconozle 50mg Minocycline 800mg Bactrim 9:30PM 1 Charcoal 11AM 3 Sm. Scoops D-Lactate 2mg. Melatonin 50mg Mag. Citrate 6mg. Seroquel

Ohmygosh yes! I don't even bring my husband to doctors appointments any more. He's a real nice guy and I think tries to "get" it but its useless at this point. It's super tough on the marriage!!! Perhaps one of your doctors could help explain it to h a little. I also think my husband feels left out so I tend to send him out for the supplements and let him know I couldn't do it without him! You can PM me anytime if u need to vent!

Thanks. I'll call doctor and make the changes you suggested.

Here is her schedule. 11AM 500mg Omegas 50mg Minocycline 800mg Bactrim 10ml Iron 12PM 70mg Milk Thistle 300mg Motrin 4000 UI D3 8PM 70mg Milk Thistle 50mg Fluconozle 50mg Minocycline 800mg Bactrim 9:30PM 1 Charcoal 11AM 3 Sm. Scoops D-Lactate 2mg. Melatonin 50mg Mag. Citrate 6mg. Seroquel

I am suffering for the last month with horrible head ache too. It's my whole head. Ouch. I tried high dose motrin, stuff for migraines and more. I am not being treated for lyme right now, but was in the past. I had an MRI, that showed some changed in white matter on lower part of head in back, but nothing to worry about they said. Mama2alex said to look into mold being the problem, which makes sense because this head ache started right at same time I put my heat on. Just wanted to pass that on to you. The pain is all over my head. Burning sensation and lost of pressure.

Can titters be high for igg? Sounds strange that they can be since its old infection, right?

I have had a dibilitating head ache for over a month. I am possitive for lyme and was treated and felt great but head is now killing me again, and not going away. Doxy no longer works. I have another appiontment with LLMD but not for 3 weeks. I have tried high dose motrin and migraine meds. I know tylenol is not good, so what else can I try??? It is pretty unbearable. Thanks.

LLM, I am so happy for your child! I really appreciate all of your smart advice. Thanks! This is my meds schedule for my girl. I can't give charcoal at bedtime because of probliotics and other stuff. Any suggestions? I would also love to give meds only 4 times a day, since she is starting to REALLY give me a hard time here. Any advice is very much appreciated!!!! 11am- Give ALL pills with lemon water! Bactrim 80/160 Minocycline 50mg 12pm-With food 35mg.Milk Thistle 300mg. Motrin 4000 UI D3 6pm-Empty Stomach 10ml Iron 300mg Omegas 50mg Fluconozle 8pm 35mg. Milk Thistle Bactrim Minocycline 11pm 50mg Mag. Citrate 2-Melatonin 6mg. Seroquel 3 sm. scoops D-Lactate custom probiotic.

The bad reaction never ends and sleep is worse on thi stuff. Wondering if I should just keep upping probiotics to help with die/off (if it is doe/off) or go back on ampho.? We stopped ampho. Cause I thought it was giving bad head aches but it was not the ampho doing this.

Has anyone found a link between these two things? And can you tell me what helped most? TU

On my child's test it says....Low - Normal - High (under high is says 4.85) Is that the titer number? Thanks!

It shows Igg viruses on labs. I know that means an old virus. So can I assume that titers are listed ONLY if it is a current virus??? My girl is showing slight improvement with the minocycline/Bactrim for bartonella and lyme, but she still tosses and turns all night and her hers flutter open all night long. Thinking of adding valtrex in again, but does it make sense to treat a virus if its dead?. My gut feeling is that we are REALLY missing something since she has been on mino/bactrim for quite awhile and sleep is still horrible (little improvement) and racing thoughts are just awful. Would like your opinion. Thanks

I know rowing mom. I realized after I posted that there were the two links. Thanks

I am a bit confused. Rowingmom...the website you posted has stretch marks on pregnant women, that I can see. Not sure why Aggie is saying that it is what she is seeing on her child and that she can't wait for doctors appointment. (I am probably missing something.) The stretch marks on those pregnant bellies look my daughters (exactly) and Dr. J. said they were bartonella rash. Now I am not so sure. Perhaps they are just from gaining a bit of weight. They are on back of her legs, just below her bumm.