trintiybella Posted May 13, 2013 Report Share Posted May 13, 2013 We have tried so many things to try to get this girl relief for the racing/bombarding thoughts. Has anyone had this symptom and what helped with this. Please...any advice will be helpful.... Link to comment Share on other sites More sharing options...
searching_for_help Posted May 13, 2013 Report Share Posted May 13, 2013 My daughter has the same problems - very constant, intrusive thoughts. Severe OCD, anorexia with exercise compulsion. Her mind never rests. She's unbelievably miserable. So bad that she wants to die. We've tried many psych meds and IVIG. She's been on antibiotics for a long time. She seemed to worsen last year when she had mono (she was never actually diagnosed with mono, but she had extreme exhaustion for 3 weeks.) She tested positive for strep then, and that's when we started the abx, but she almost always tests positive for strep - even while being on 4 different abx. When her thoughts are the worst, she'll grab her heard and scream to make them go away. It's horrible to watch... We've also tried Lemon Balm, but that didn't help either. We're currently trying Lamictal, but she doesn't think it's helping much. Her depression comes and goes, but right now she is able to keep busy. The only thing she said she thinks might have helped a little was Strattera, but she couldn't stay on it because her weight started to drop on it. The last thing we need is more weight loss. My daughter has had many of these problems for 8-10 years, and I'm wondering if having it so long has made it harder for her to get better. Has your child had these thoughts for a long time? I hope someone chimes in with some ideas to help. Link to comment Share on other sites More sharing options...
Guest Posted May 13, 2013 Report Share Posted May 13, 2013 I'm so sorry to the above poster. I can completely relate to what your daughter is going through, IT IS torment, but I can't find anything to help either. The thoughts are constant, 24/7, I can't sleep, relax, I'm so fatigued and sleepy that I can't even leave my house or the couch much just lie there with racing thoughts. I try to combat them b/c I've been doing CBT for 5 yrs and it doesn't help at all now. Sometimes I scream at my own mind "shut up"! I look forward to any responses. I was just recently diagnosed with pandas so haven't done any auto-immune treatment yet. I've been on 100 diff. psych meds in the past 10 years and nothing ever has helped. Benzodizepine helps the most with sleep and crashes from M.E./CFS. I am so sorry. Since this all started for me 4 years ago my ocd just keeps getting worse and more out of control, I have no idea what to do. 50 mg of zoloft + st. john's wort + high doses of flax seed oil gave me serotonin syndrome so I'm really scared now to take anything. Link to comment Share on other sites More sharing options...
Guest Posted May 13, 2013 Report Share Posted May 13, 2013 Also, my brother has been here visiting with me and he's very very worried. His g/f called me today (to whom I'm never spoken with) and she said he was so concerned b/c of my sickly state. My brother is not one to say these things but it must be bad to speak to his g/f about it. The problem is my PCP is a total douche, he doesn't know jack about anything and doesn't care about me. I'm trying to get a new one but it's hard w/ medicaid. I see Dr. T only by phone, never seen him in person. So I don't have any doctor locally who's really looking after me. Any suggestions will be very welcome! I have heard that USF has ocd and pandas program? That is not too far from where I live. I would also like to get tested for anti-nmda but have no idea who could do it. All the doctors in my city are crap. I've also been to shands and mayo clinic jax many times - did nothing for me. A holistic NP is willing to take me on for family care but I am rather opposed to trying random supplements at this point - I've had very bad reactions to every single CFS treatment thus far, it is not fun. But at least she is willing to see me. Link to comment Share on other sites More sharing options...
trintiybella Posted May 13, 2013 Author Report Share Posted May 13, 2013 My daughter had the racing bombarding thought since she could talk. Almost 12 years now. Lamictal does nothing. Vancomycen and Amphtecerin for Clostridia helped a little. It is horrible. We tried so many things. I think someone once suggested Topomax. I thing we will try that next. Prozac made her mean and agitated. Ohmygosh...these poor kids. We have not tried IVIG yet. Link to comment Share on other sites More sharing options...
queenmother Posted May 14, 2013 Report Share Posted May 14, 2013 GABA and magnesium citrate are ABSOLUTE NECESSITIES!!!!! (Make sure is is plain GABA)Sounds like glutamate issues. QM Link to comment Share on other sites More sharing options...
trintiybella Posted May 14, 2013 Author Report Share Posted May 14, 2013 queenmother...will that help the bombarding/racing thoughts even if they are caused by bartonella, do you think? thanks for your help. Link to comment Share on other sites More sharing options...
T_Mom Posted May 14, 2013 Report Share Posted May 14, 2013 We have tried so many things to try to get this girl relief for the racing/bombarding thoughts. Has anyone had this symptom and what helped with this. Please...any advice will be helpful.... Our oldest d (13 at the time) had intrusive thoughts that were stopping her from focusing at school, or at home--constant swearing in a circular fashion at God. ALL the time, as one of her OCD symptoms during her last episode. She had plasma pheresis and within two weeks she reported that all of the intrusive OCD thoughts had STOPPED. These had been literally crippling her for 9 months. A huge relief. If the OCD intrusive thoughts ARE PANS or PANDAS caused then the treatments for PANS/PANDAS should work, and in my opinion should be at least tried to SEE if they will give your child a break. I would start with the month of antibiotics, move to steroid burst, and on to IVIG or pex if possible, my best to you-- Link to comment Share on other sites More sharing options...
Mayzoo Posted May 14, 2013 Report Share Posted May 14, 2013 I have regular, moderate OCD. Not related to any infections that I am aware of, and I have had intrusive thoughts since I was in my early teens. I did not even know this was an OCD symptom until I had to research this stuff for my kiddos sudden OCD/PANS. Oddly, I will leave no rock unturned when it comes to research for her symptoms, but I do not have the time or inclination to research for myself usually. What I have found that helps me is a low dose of an SSRI every morning and when I need it to sleep, I take melatonin and lemon balm if I am having racing thoughts prior to laying down. Link to comment Share on other sites More sharing options...
hugs2day Posted May 14, 2013 Report Share Posted May 14, 2013 When my son experienced this OCD scary thoughts and magical thinking he started Flagyl and it brought him immediate relief. His dr's suggestion and he was right. Now he only gets instrusive thoughts like briefly once/twice a day or not at all mostly in the morning before I give him flagyl. I am told its likely clostridia and that is what the flagyl is treating. I still suspsect lyme but it is inconclusive. Link to comment Share on other sites More sharing options...
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