Scrambling and not sure what to do?

[Wilma Jenks]

Ok, I will try to make this clear...

 

My girl has definitely improved on the low dose of bactrim and minocycline. She started showering, sleeping and her OCD is way better...but she is starting to get mean and a bit impulsive. She is only on about 1/4 of the prescribed dose of these drugs, per doctors orders, since she is so sensitive. I am trying to figure out wether to try going up again slowly again, back down more or the bactrim to the cipro. This is a short version of what I saw happen when starting these drugs:

 

She was on lamictal alone and was less aggressive but OCD was bad, she was not sleeping or showering and super hyper and confused

 

I added in bactrim and she started to sleep, but it made her mean. I added in minocycline and it made her less mean, she started showereing and OCD got better. I kept going up on these two drugs, and she started to bounce off the walls and could not catch her breath and OCD got much worse. I backed down and she started to do better, but now I see her getting more mean and teasing kids/impulsive, she won't let her friends leave when its time for them to go home. Her OCD, sleep, and being able to shower are still good. Not sure if I should try changing the bactrim to cipro??? Or do you think I should a psych. drug into the mix for this aggressive behavour??? She was on seroquel, but it put her into like a coma state. Not good for her. Any suggestions. I am a bit confused. Thanks a lot.

 

I suspect the bactrim is making her like this, but I am afraid to change it since I see good things too. I am a bit confused and need some diretction.

[LNN]

At some point, you will likely need to push thru "herxing". There is no magic drug combination (IMO) that can get you to good health without any difficult stretches. But, given your daughter's unique history, your best bet is to have this conversation with her treating LLMD. Anything any of us tell you is without the medical training, experience or access to your daughter's medical profile that your LLMD has. You can also ask about non-steroid anti-inflammatories. Perhaps that would be more effective than changing antibiotics. Any attack on an infection will produce inflammation and toxins. So these are additional areas to discuss.

 

That said, I strongly urge you to add Cognitive Behavior Therapy and ERP therapy. Now that her OCD is less severe, it's a good time to re-train her brain. Rages, meanness, compulsions - are all helped by changing the way you mentally react to stress. IMO, drugs alone will not be nearly as effective as a combination of medical and psychological treatments. The skills you learn with CBT and ERP are life-long and very powerful. Yes, it is a lot of work, with lots of "failures" as you practice and re-train your way of thinking. But it can be so very effective, especially if the medical treatment is helping to knock the OCD piece down into a more manageable component. You can start with "Talking Back to OCD" by John March, "What To Do When Your Brain Gets Stuck" by Dawn Heubner and by going to http://www.ocfoundation.org/treatment_providers.aspx to find a therapist. You want someone who specifically uses ERP, not "talk therapy". It's like exercise. You can't do it a few times and see immediate results. It takes daily hard work and practice. But if you stick with it, the impact can be huge.

[SSS]

I agree with LLM, best to check with the Dr., and also at some point we just have to push through.

 

I was told by our LLMD that we just have to push through with my dd6. Left to my own devices, in our past history, when trying to do a parasite protocol, other things with her, I couldn't hang with the die off, so I would quit.

Currently I am giving her B12, and I hate it, it makes her hyper, I can see 'mean-ness' too, but I am pushing through, because it is part of what she needs.

Occasional ibuprofen, a drainage rememdy, epsom salt cream, keeping her active (exercise) are some things to help.

 

Personally, I just started Bartonella treatment, and I can tell you, it is not easy nor fun. Weird sensations in the body, I am having anxiety ramped up, and some Tony Soprano thoughts race through my head with some choice swear words. Hard to deal with other people.

I also am doing detox stuff, but know I need to push through. Get through each day the best I can. Easier as an adult in a sense, because I have a rational side that comes with age, that tells me 'Just keep your mouth shut. Don't speak, you will regret it.'

The children don't have this.

(Feel free to remind me of this myself when my own young daughter starts her Bartonella treatment.)

 

Hang in there Wanda---remember all the positives, and know this can take awhile (remind me of this, too.)

 

P.S.

Wanted to add I am drinking 8 oz. glasses of water 8 times a day (first time in my life) and cut out any obvious sugar items--- this is helping. I find my body actually wants all the water. If you can get her to drink a lot, this might help.

Edited September 6, 2011 by S & S

[KaraM]

I am giong to echo LLM and S&S...my dd's Bartonella progress was slow, with initial herxes, followed by improvement, then smaller herxes. It's full of ups and downs, but the downs are usually followed by bigger improvements. One step back, one and half foward. In the end, I think you have to be patient...especially if you see a trend like this.

 

In addition to the ERP suggestion, what about detoxing? Are you trying anything for that? If she is willing to shower now, would she be willing to do Epsom Salt baths?

 

Kara

[Wilma Jenks]

Thanks for the suggestions. She is showering but won't bathe. She for sure has made progress but she is still aggressive and I am not able to get her to school let along any therapy. She is not "resisting" me, she is just a very sick girl still and not able to pull herself together yet. But the gains I have seen are BIG!!! She showers, sleeps at night and I don't see much OCD. I am getting in-home tutoring, so I am happy about that.

[tpotter]

What about epsom salt foot soaks? We have done that. Also, bentonite clay, activated charcoal, and there are others suggested. Toxins are being released when you are treating with abx, and you need to soak them up. I've heard good things about chlorella, too, but don't have any experience with that. We do these twice a day (I try to get everyone to do 2 different ones each day, because they work differently.

[lfran]

Just sent you a PM!

I agree with LLM, best to check with the Dr., and also at some point we just have to push through.

 

I was told by our LLMD that we just have to push through with my dd6. Left to my own devices, in our past history, when trying to do a parasite protocol, other things with her, I couldn't hang with the die off, so I would quit.

Currently I am giving her B12, and I hate it, it makes her hyper, I can see 'mean-ness' too, but I am pushing through, because it is part of what she needs.

Occasional ibuprofen, a drainage rememdy, epsom salt cream, keeping her active (exercise) are some things to help.

 

Personally, I just started Bartonella treatment, and I can tell you, it is not easy nor fun. Weird sensations in the body, I am having anxiety ramped up, and some Tony Soprano thoughts race through my head with some choice swear words. Hard to deal with other people.

I also am doing detox stuff, but know I need to push through. Get through each day the best I can. Easier as an adult in a sense, because I have a rational side that comes with age, that tells me 'Just keep your mouth shut. Don't speak, you will regret it.'

The children don't have this.

(Feel free to remind me of this myself when my own young daughter starts her Bartonella treatment.)

 

Hang in there Wanda---remember all the positives, and know this can take awhile (remind me of this, too.)

 

P.S.

Wanted to add I am drinking 8 oz. glasses of water 8 times a day (first time in my life) and cut out any obvious sugar items--- this is helping. I find my body actually wants all the water. If you can get her to drink a lot, this might help.

[Iowadawn]

Thanks for the suggestions. She is showering but won't bathe. She for sure has made progress but she is still aggressive and I am not able to get her to school let along any therapy. She is not "resisting" me, she is just a very sick girl still and not able to pull herself together yet. But the gains I have seen are BIG!!! She showers, sleeps at night and I don't see much OCD. I am getting in-home tutoring, so I am happy about that.

 

 

It is hard to see the big picture. What you wrote here is huge. She has been sick for a very long time. The healing is going to take a very long time. Just halting the infections/autoimmune garbage happening in her body and brain is a huge first step. We are a year into our son's lyme/bartonella/babesia treatment and it has been a slow, slow process--forward & backward, forward& backwards. You are on the right course!! Stay strong. dawn

[philamom]

What about epsom salt foot soaks? We have done that. Also, bentonite clay, activated charcoal, and there are others suggested. Toxins are being released when you are treating with abx, and you need to soak them up. I've heard good things about chlorella, too, but don't have any experience with that. We do these twice a day (I try to get everyone to do 2 different ones each day, because they work differently.

How much salt do you add to a foot soak? thx

[debbie5846]

I am new to this forum, my husband was recently diagnosed with Lyme disease after 6 months of neurological sysmptoms and no answers froM our doctors as to the cause.

His lyme doctor has recently started treating him for Bartonella, he is having a LOT of anxiety, anger problems etc. The doctor put him on Kavinase a supplement to help his mood ,but he needs something more.

Does anyone have experience using Kavinase or any other supplements to help with the anxiety,anger (meanness) that go along with Bartonella.

Any help or suggestions would be helful.

THANKS!!

[JuliaFaith]

I am new to this forum, my husband was recently diagnosed with Lyme disease after 6 months of neurological sysmptoms and no answers froM our doctors as to the cause.

His lyme doctor has recently started treating him for Bartonella, he is having a LOT of anxiety, anger problems etc. The doctor put him on Kavinase a supplement to help his mood ,but he needs something more.

Does anyone have experience using Kavinase or any other supplements to help with the anxiety,anger (meanness) that go along with Bartonella.

Any help or suggestions would be helful.

THANKS!!

Welcome to the forum. It is a great place to be. On another note, you may get more response if you start this as "Start a New Topic" rather than adding on to someone else's topic.

 

One thing my son is taking for anxiety etc. is Lithium Orotate, 20 mg, 2 per day for 140 lbs. He is supposed to take 3 but 2 seems to work better for him. This is a supplement so you could probably pick it up at a good vitamin store. The brand we are currently using is "Vital Nutrients". This brand is really good about checking to make sure the product is pure without any addl bacteria/yeast/molds etc.

 

This is a common topic on this forum so you may want to do a search too. Your LLMD may also have a good recommendation.

 

Best wishes for your husband.