laure Posted May 23, 2011 Report Share Posted May 23, 2011 Dd10 left the computer the other night and we found her history of topics was about ways kids commit suicide. While we don't believe she will act on this, still it is disturbing. She is tired of being crazy, and has no faith in her treatment. I can say she is fully back to square 1, or darned close, after 5+ months of Lyme treatment. I am dropping everything for a few days, but needs to stay on something for allergies. Will watch for improvement, but not expecting much since aso and anti DNase b titres probably still high. Should we stay on bentonite clay? Probiotics? Bur bur? Want to do the bare minimum so as to not confuse the issue. Thanks for help. Link to comment Share on other sites More sharing options...
momofgirls Posted May 23, 2011 Report Share Posted May 23, 2011 (edited) Gosh Laure I am sorry things have gotten so scary with your daughter. I think it is okay to take a break from antibiotics and try heavy detox for a bit. If it were me, I would keep the probiotics and give as much bentonite (2 cups a day?) or charcoal pills (20 per day)as you can. Maybe also start her on motrin daily to help with inflammation. I am sure others will chime in with advice too. Your appointment with the new LLMD can't come soon enough. Waiting is so hard when you are so scared. Hopefully you will get good direction and can begin a treatment plan with confidence that you are doing all the right things. Unfortunately, even then it can take time to see relief. Hope you see some improvement with this break in treatment and intense detox. Kim Edited May 23, 2011 by momofgirls Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted May 23, 2011 Report Share Posted May 23, 2011 Laura: I agree with Kim in terms of heavy detox! If you can, I would try to get 2 cups of bentonite in a day. Even just giving your daughter a 2 day break from antibiotics should help a little. All last winter, my son herxed so intensely from lyme treatment and we had to give him a 24 hour break once a week for about 6 months. I am so sorry you are going through this right now! It is sooooo painful! My thoughts are with you! Link to comment Share on other sites More sharing options...
philamom Posted May 23, 2011 Report Share Posted May 23, 2011 Laura- Very good idea to take a break. Please, please, please keep an eye on her. Sending prayers your way!! Melinda Link to comment Share on other sites More sharing options...
Fixit Posted May 23, 2011 Report Share Posted May 23, 2011 jmho..i would think you could take a week break..we did that. we are not doing heavy lyme protocal but he is on doxy, as i do suspsect it is at least myco p....he is on 100mg 85lbs...did this for a month or better and plan to up another 50mg in a few days.. you may want to include milk thistle even if off abx, maybe ever other day. keep the probiotics at same level....make sure the bowels are moving...i give ds triphala at bed time...VERY mild..and you don't become dependant..he has been using for several months and even if your child is not ticcer...maybe magnesium baths...can't say i get these in too often as ds doen't like to sit there...and making an 11 year do things isn't always easy Link to comment Share on other sites More sharing options...
momaine Posted May 23, 2011 Report Share Posted May 23, 2011 I'm really sorry to read this. My dd too wishes she were dead sometimes. It's really really painful to hear. My LLMD suggested Glutathione for detox. 500mg once per day. The two day break we took helped a bit. Thankfully, my dd FINALLY seems to be improving..slowly..almost 16 weeks into lyme treatment and in the second week post 1.7 g/kg IVIG. Here's hoping it continues and I didn't just jinx us! Link to comment Share on other sites More sharing options...
laure Posted May 23, 2011 Author Report Share Posted May 23, 2011 Thanks all for advice... she will take bentonite clay pills 10 at a time. Since she is already taking those I will leave them in. I may stop the probiotics since she has no belly troubles except increases in abx, and has been tolerating those well lately. Needs to stay on benadryl another few nights for pretty bad seasonal allergies. I also give her a sudafed in the morning so she can get through the school day without annoying people. She has always done well with that too. I'll keep posting, this should be interesting... Link to comment Share on other sites More sharing options...
laure Posted May 23, 2011 Author Report Share Posted May 23, 2011 Gosh Laure I am sorry things have gotten so scary with your daughter. I think it is okay to take a break from antibiotics and try heavy detox for a bit. If it were me, I would keep the probiotics and give as much bentonite (2 cups a day?) or charcoal pills (20 per day)as you can. Maybe also start her on motrin daily to help with inflammation. I am sure others will chime in with advice too. Your appointment with the new LLMD can't come soon enough. Waiting is so hard when you are so scared. Hopefully you will get good direction and can begin a treatment plan with confidence that you are doing all the right things. Unfortunately, even then it can take time to see relief. Hope you see some improvement with this break in treatment and intense detox. Kim So coincidental, Denver LLMD office just called with a few cancellations today...sorry we can't charter plane that fast!! Link to comment Share on other sites More sharing options...
ptcgirl Posted May 23, 2011 Report Share Posted May 23, 2011 Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated. Link to comment Share on other sites More sharing options...
lismom Posted May 23, 2011 Report Share Posted May 23, 2011 Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated. Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. Link to comment Share on other sites More sharing options...
ptcgirl Posted May 23, 2011 Report Share Posted May 23, 2011 Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated. Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. She is on 150mg of zoloft right now. It is suppose to help with the OCD and did before we started the antibiotics. Even at that high of a dose, she has OCD and depression. Link to comment Share on other sites More sharing options...
laure Posted May 23, 2011 Author Report Share Posted May 23, 2011 Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated. Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. We use advil daily in the morning, and Synergy multiple vitamin has coQ10, ALA, resveterol, quercitin, B12, so covers a lot of bases for mood swings. The contamination OCD is what makes her so miserable. She has tried to explain Lyme to her friends, but I think they (and their parents) still judge her/us. Link to comment Share on other sites More sharing options...
ptcgirl Posted May 23, 2011 Report Share Posted May 23, 2011 Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated. Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. We use advil daily in the morning, and Synergy multiple vitamin has coQ10, ALA, resveterol, quercitin, B12, so covers a lot of bases for mood swings. The contamination OCD is what makes her so miserable. She has tried to explain Lyme to her friends, but I think they (and their parents) still judge her/us. My dd won't share any of it with friends at all. They just think she's avoiding them. She has become very angry with me for sharing ANY information with close family and friends. She feels so different and calls herself a freak. I wonder if there is an online support group for our kids? Link to comment Share on other sites More sharing options...
philamom Posted May 23, 2011 Report Share Posted May 23, 2011 Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated. Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. We use advil daily in the morning, and Synergy multiple vitamin has coQ10, ALA, resveterol, quercitin, B12, so covers a lot of bases for mood swings. The contamination OCD is what makes her so miserable. She has tried to explain Lyme to her friends, but I think they (and their parents) still judge her/us. My dd won't share any of it with friends at all. They just think she's avoiding them. She has become very angry with me for sharing ANY information with close family and friends. She feels so different and calls herself a freak. I wonder if there is an online support group for our kids? EXACTLY the same here! Link to comment Share on other sites More sharing options...
momaine Posted May 24, 2011 Report Share Posted May 24, 2011 (edited) Such timing for this post, I just had a tearful conversation with my dd11 about this very same thing. She feels like she wants life to end and doesn't see any future. She doesn't want to be around any friends (only has a few left) because they will think she is a freak due to OCD. She believes that she may be going insane. I'm not sure what to do. I'm strongly considering taking her off of everything for a while. I just feel horrible for her. So much negativity. She has been on treatment since early March. We have appt with dr j in ct again in July. I just don't know how much more she can take. She is so depressed. Any advice appreciated. Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. She is on 150mg of zoloft right now. It is suppose to help with the OCD and did before we started the antibiotics. Even at that high of a dose, she has OCD and depression. If you end up taking a break, Dr. J doesn't recomend you do so for more than 2 days. I would really really advise you to talk to Dr. J. The antibiotics are what will eventually make these kids well. Are you doing detox? I know its a long road. He said most people see improvement within 16 weeks and at the outside, 6 months. I hope you get through it okay. I know how hard it is. We are just now seeing a tiny bit of improvement almost 16 weeks into treatment. (and still doing IVIG with Dr. B. ) It's giving me hope though. Edited May 24, 2011 by momaine Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now