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Need Reassurance~ Bartonella question


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My child has tried the bactrim biaxin and minocycline. None have helped the OCD. Please tell me if it is time to try psych. drugs again.? Has anyone had to try even more that this to try to help the bartonella? Please give me some advice. Feeling really down 2 night. She can not get from the bathroom into her bedroom because she has so many rituals on the way (hopping, grunting, rolling her eyes ect..) that it takes for ever to get there. It is just horrible to watch.

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Since treating the tick-borne bugs, each time we have had hd IVIG our ds has had bartonella fine "scratch-like" looking rashes show up in abundance on his back--we are pulling it out of somewhere! He takes Biaxin & Rifampin for bartonella now. We just started a protocol of colloidal silver. A day into it several rashes (where these type of rashes have never been spotted) showed up along along the back of his neck. We are pulling it out.

 

As far as drugs, we would be in a world of hurt without them; others may have different experiences. You live with her. You see how she is day in/day out. NO one--not even the docs--have the foggiest clue what goes on in your home. Whatever you do, don't be thinking that somehow you are "giving up" "wimping out" "feel guilty" if you get meds for your dd. HARDLY. It is no panacea. The really important piece is a GOOD psych doc that will listen & be on board with the lyme tx,and change meds if things are not working. It is not a quick fix--nor is any of the other treatment. If a terrible infection developed somewhere in your body & was causing pain or other symptoms, a doc would treat the troublesome symptoms right along side treating the infection. Just a thought. Others may not agree.

 

I will pray that James 1:5 will be real to you. Dawn

Edited by Iowadawn
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Iowadawn

 

Would you mind sharing more specific details of your sons rash? My son started getting dotted line rashes by his armpits, upper arms and back. Just trying to see if I can link this rash to a specific co-infection. It's definitely not a stretch mark type rash. Thanks for any help.

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I wish there were an easy answer. There isn't. My dd is on psych drugs because I felt that if there were something out there that would help her, then why the heck not. She was suffering SO MUCH. I am not sad that we tried them and for her, they help. It didn't give her total relief from OCD by any means, but it did take the edge off the OCD. 40mg Celexa right now. went to 20mg successfully at one point but went back up when she struggled more after starting lyme treatment. I also have Ativan on hand for nights when she can't sleep. It helps her settle down. Just .5mg It's not to be used regularly because they can become addicted to it, but I'll tell you it was a life saver when she was mad enough to think about killing herself because she was so aggravated with the ritual she had to do at bedtime.

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Iowadawn

 

Would you mind sharing more specific details of your sons rash? My son started getting dotted line rashes by his armpits, upper arms and back. Just trying to see if I can link this rash to a specific co-infection. It's definitely not a stretch mark type rash. Thanks for any help.

 

If you go to a site called dr.jones kids. He has a bunch of rash pictures. There is a picture of a small, thin scratch-like rash on a lady's hand. Best online example I can find. Bartonella. Our ds's look like this, but are usually longer. From a distance they will remind you of the "fingernail across the skin" attack. The red is dashed, but all below the skin surface. Earlier this year after one IVIG his upper back had MANY long rashes. He has had a few show up on his neck. They will hang around for a few days and fade. Right now he has none. We have an IVIG this weekend--I bet they pop out again. It's a weird time & my description & writing stinks--I hope this helps you. Dawn

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Hi Wilma,

 

Since she doing better in other areas, but not the OCD, would it be possible to introduce CBT/ERP therapy? Do you have a therapist near you that is skilled in CBT/ERP?

 

Another thought would be look into Inositol. It is basically vitamin B-8. There have been a few small studies on it helping with OCD. It's also supposed to help with liver functioning...so may be good to give in that sense, too. You can get it at health foods stores or Whole Foods. It comes in powder form with a very slight, sweet taset. Just mix in water or juice. INtroduce slowly so she doesn't get gassy. Obvisouly, you should run this by your doctor first. But it is supposed to be very safe.

 

Kara

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Iowadawn

 

Would you mind sharing more specific details of your sons rash? My son started getting dotted line rashes by his armpits, upper arms and back. Just trying to see if I can link this rash to a specific co-infection. It's definitely not a stretch mark type rash. Thanks for any help.

 

If you go to a site called dr.jones kids. He has a bunch of rash pictures. There is a picture of a small, thin scratch-like rash on a lady's hand. Best online example I can find. Bartonella. Our ds's look like this, but are usually longer. From a distance they will remind you of the "fingernail across the skin" attack. The red is dashed, but all below the skin surface. Earlier this year after one IVIG his upper back had MANY long rashes. He has had a few show up on his neck. They will hang around for a few days and fade. Right now he has none. We have an IVIG this weekend--I bet they pop out again. It's a weird time & my description & writing stinks--I hope this helps you. Dawn

 

Thanks Dawn! I have studied repeatedly the rashes on Dr J's website. I have not yet found a lines of petechial dots as a rash except for one other mom that shared photos with me. We are currently treating my son for Bartonella with Biaxin and Rifampin and 3 months into this course he still gets these rashes. We are going to continue to treat Bart for at least 6 months and then probably treat Babesia when his Bart IGG turns negative. Just trying to figure out if its Bart to judge clinical response to treatment, but I think its impossible to know. Thanks again for your response and hope your son responds well to the latest IVIG!

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My child has tried the bactrim biaxin and minocycline. None have helped the OCD. Please tell me if it is time to try psych. drugs again.? Has anyone had to try even more that this to try to help the bartonella? Please give me some advice. Feeling really down 2 night. She can not get from the bathroom into her bedroom because she has so many rituals on the way (hopping, grunting, rolling her eyes ect..) that it takes for ever to get there. It is just horrible to watch.

 

 

for us, the ocd was very intense, and the last thing to go.... it still rears its head in a flare, but it is so mild and it passes quickly. IT DOES TAKE TIME AND PATIENCE with the medication. We went back on abx in Dec 2010, then added a 2nd start of FEB 2011. Just in the last 6-8 weeks have we noticed the OCD disappear, so that was about 5 steady mos of 2 abx, and may have been longer or not disappeared at all if we were still only on 1. We do not have bartonella, lyme only, but the key is to be consistent with the meds and patient. There are ups and downs even when you are consistent. Keep in mind the psych meds do not CURE anything, and I think you had said many of them didn't even work. My thought is they are just another variable and another strain on your dd's already taxed system. Lyme itself creates flares of symptoms in cycles. When the cycles were too close together I couldn't notice the pattern. Now that she is healing I notice the flares and sometimes there are closer together but they get milder and milder.

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My child has tried the bactrim biaxin and minocycline. None have helped the OCD. Please tell me if it is time to try psych. drugs again.? Has anyone had to try even more that this to try to help the bartonella? Please give me some advice. Feeling really down 2 night. She can not get from the bathroom into her bedroom because she has so many rituals on the way (hopping, grunting, rolling her eyes ect..) that it takes for ever to get there. It is just horrible to watch.

 

Wilma-

 

How are things going? Any changes? Been thinking of you. dawn

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Thanks for asking...

I added in a pinch of inositol and it is helping. A year ago, we tried inositol and it always made her more confused and worse. This time, while she is on the abx. the inositol is working. The only thing I can think of is that she is getting better with the abx. because it is finally addressing what is wrong, which is bartonella. This is amazing! She actually enjoys playing with other children and does not abuse them anymore. I am so thankful to you guys.

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What dose of inositol do you give? I've been giving my son about 5,000 mg for the past three weeks and haven't seen any improvement.

 

We are at a real low with his ocd. He is pretty much unable to do anything without it bothering him right now. We too are on the brink of begging for any med, including psych, that might offer him some relief from this. They say to heal you need rest and low stress levels, which seems impossible for someone who suffers from severe ocd like this.

 

He is much better in many areas and I'm praying this is a short bump in the road, although it's going on two weeks now:(

 

He is currently on minocycline for anaplasma, mycoplasma, and lyme; amoxicillin for strep, dilfucan (for yeast), and was recently prescribed rimfampin for bartonella 5/7 days at bedtime, but, I haven't added that in b.c. he seems to be herxing so badly from the other stuff, I can't imagine it getting worse, or, will rimfampin make it better?

 

Just unsure of adding another antibiotic when it doesn't seem like his body can detox well as it is (MSH = 17)

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Thanks for asking...

I added in a pinch of inositol and it is helping. A year ago, we tried inositol and it always made her more confused and worse. This time, while she is on the abx. the inositol is working. The only thing I can think of is that she is getting better with the abx. because it is finally addressing what is wrong, which is bartonella. This is amazing! She actually enjoys playing with other children and does not abuse them anymore. I am so thankful to you guys.

 

Awesome, Wilma! The social stuff is sooo big. (Watching the IVIG drip again today!) Dawn

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What dose of inositol do you give? I've been giving my son about 5,000 mg for the past three weeks and haven't seen any improvement.

 

We are at a real low with his ocd. He is pretty much unable to do anything without it bothering him right now. We too are on the brink of begging for any med, including psych, that might offer him some relief from this. They say to heal you need rest and low stress levels, which seems impossible for someone who suffers from severe ocd like this.

 

He is much better in many areas and I'm praying this is a short bump in the road, although it's going on two weeks now:(

 

He is currently on minocycline for anaplasma, mycoplasma, and lyme; amoxicillin for strep, dilfucan (for yeast), and was recently prescribed rimfampin for bartonella 5/7 days at bedtime, but, I haven't added that in b.c. he seems to be herxing so badly from the other stuff, I can't imagine it getting worse, or, will rimfampin make it better?

 

Just unsure of adding another antibiotic when it doesn't seem like his body can detox well as it is (MSH = 17)

 

My son is on mino and rifampin. My son has lyme and bart. He has been sick for almost 3 years. It took this combo about 4 months before he turned the corner. Its amazing to see. the rifampin was key for us. I'll be honest he did herx quite badly. I'd say he herxed for all of those months. but the result in the end has been amazing. Kathy

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