Bartonella?

[lmkmip67]

We went down to see Dr. B today, after stopping IVIG after the 8th. Dr. Bs next step is to retest for Bartonella and is trying Ian on a 3 antibiotic protocol for 6 weeks. He was tested for this, along with other co-infections through Igenex last year, all were negative. Dr. B said something about the Igenex isn't always great for bartonella testing, not sure what he meant exactly. But he is retesting for that. He is putting him on Augmenten, Zyth. and Bactrum. I don't love the idea of all those antibiotics, and I am not sure Ian will tolerate them. But I am willing to try for the 6 weeks. He has an idea of the next few things we will try if this doesn't do much. Next would be wheat free diet, then dye free diet, then yeast treatment. All done individually. I don't know. I am feeling overwhelmed again. i would honestly wonder if Ian didn't have regular OCD with a side of tics if this hadn't started right after strep. I keep thinking about seeing an integrative Dr. that also treats lyme, here locally. But I don't want to do more than one thing at a time. So I guess we will maybe see how this goes and try Dr. Bs ideas through the fall. If we are not getting anywhere we are going to have to go the local route with the doctor here. (Kara, I will call you this week!). The prozac is helping a bit, and I am very thrilled with our therapist currently. But when Ian goes off of Augmentin (we ran out for a few days, crossed signals for refill) he gets breakthrough vocal tics. Not much, but I know what they are. I have tested it a few times in the last couple of months. So I know there is something there. Anyway, so I am curious to learn more about bartonella. We won't know the results for a couple of weeks from that. But it is related to lyme, no? Or is it just associated with ticks, like lyme? Does anyone have experience with it, and if so, what treatment did you receive?

 

On the plus side Dr. B suggested testing Ian for food allergies (he has had a dairy allergy since he was born) so we did all of them today! He was due, it has been two years. I was so happy to get that done in one day, instead of having to take him locally another afternoon. Skin tests were negative for all food allergies. Blood test for dairy will be back in a few days.

 

More confusion. But I still feel like we are peeling away the onion skin. the prozac has helped him stabilize a little bit in order to focus on some therapy. So that has been very helpful. It has also improved his mood a bit, so he is easier to deal with.

[lmkmip67]

I guess I should also say that Ian doesn't seem to have side effects that are typical with that, like night sweats and stretch marks. So I am not putting much stock into this being what the issue is.

[Ebersolk]

We went down to see Dr. B today, after stopping IVIG after the 8th. Dr. Bs next step is to retest for Bartonella and is trying Ian on a 3 antibiotic protocol for 6 weeks. He was tested for this, along with other co-infections through Igenex last year, all were negative. Dr. B said something about the Igenex isn't always great for bartonella testing, not sure what he meant exactly. But he is retesting for that. He is putting him on Augmenten, Zyth. and Bactrum. I don't love the idea of all those antibiotics, and I am not sure Ian will tolerate them. But I am willing to try for the 6 weeks. He has an idea of the next few things we will try if this doesn't do much. Next would be wheat free diet, then dye free diet, then yeast treatment. All done individually. I don't know. I am feeling overwhelmed again. i would honestly wonder if Ian didn't have regular OCD with a side of tics if this hadn't started right after strep. I keep thinking about seeing an integrative Dr. that also treats lyme, here locally. But I don't want to do more than one thing at a time. So I guess we will maybe see how this goes and try Dr. Bs ideas through the fall. If we are not getting anywhere we are going to have to go the local route with the doctor here. (Kara, I will call you this week!). The prozac is helping a bit, and I am very thrilled with our therapist currently. But when Ian goes off of Augmentin (we ran out for a few days, crossed signals for refill) he gets breakthrough vocal tics. Not much, but I know what they are. I have tested it a few times in the last couple of months. So I know there is something there. Anyway, so I am curious to learn more about bartonella. We won't know the results for a couple of weeks from that. But it is related to lyme, no? Or is it just associated with ticks, like lyme? Does anyone have experience with it, and if so, what treatment did you receive?

 

On the plus side Dr. B suggested testing Ian for food allergies (he has had a dairy allergy since he was born) so we did all of them today! He was due, it has been two years. I was so happy to get that done in one day, instead of having to take him locally another afternoon. Skin tests were negative for all food allergies. Blood test for dairy will be back in a few days.

 

More confusion. But I still feel like we are peeling away the onion skin. the prozac has helped him stabilize a little bit in order to focus on some therapy. So that has been very helpful. It has also improved his mood a bit, so he is easier to deal with.

[Ebersolk]

It is my understanding that Bartonella is a separate co-infection. You could get it from a tick bite but also it can be caused by at cat scratch, fleas or body lice. It is also called cat scratch fever. My daughter was diagnosed w/Bartonella and Ehrlichia on Igenix. She had some positives but was CDC negative for Lyme. I went to Lyme dr as well as Dr B and they both diagnosed her with Lyme as well. We are currently on omnicef, azith and bactrim and we recently started tindamax (the cyst buster). We only take the cyst buster on the weekends and it definitely is stirring up old OCD things we have not seen in awhile.

 

We went down to see Dr. B today, after stopping IVIG after the 8th. Dr. Bs next step is to retest for Bartonella and is trying Ian on a 3 antibiotic protocol for 6 weeks. He was tested for this, along with other co-infections through Igenex last year, all were negative. Dr. B said something about the Igenex isn't always great for bartonella testing, not sure what he meant exactly. But he is retesting for that. He is putting him on Augmenten, Zyth. and Bactrum. I don't love the idea of all those antibiotics, and I am not sure Ian will tolerate them. But I am willing to try for the 6 weeks. He has an idea of the next few things we will try if this doesn't do much. Next would be wheat free diet, then dye free diet, then yeast treatment. All done individually. I don't know. I am feeling overwhelmed again. i would honestly wonder if Ian didn't have regular OCD with a side of tics if this hadn't started right after strep. I keep thinking about seeing an integrative Dr. that also treats lyme, here locally. But I don't want to do more than one thing at a time. So I guess we will maybe see how this goes and try Dr. Bs ideas through the fall. If we are not getting anywhere we are going to have to go the local route with the doctor here. (Kara, I will call you this week!). The prozac is helping a bit, and I am very thrilled with our therapist currently. But when Ian goes off of Augmentin (we ran out for a few days, crossed signals for refill) he gets breakthrough vocal tics. Not much, but I know what they are. I have tested it a few times in the last couple of months. So I know there is something there. Anyway, so I am curious to learn more about bartonella. We won't know the results for a couple of weeks from that. But it is related to lyme, no? Or is it just associated with ticks, like lyme? Does anyone have experience with it, and if so, what treatment did you receive?

 

On the plus side Dr. B suggested testing Ian for food allergies (he has had a dairy allergy since he was born) so we did all of them today! He was due, it has been two years. I was so happy to get that done in one day, instead of having to take him locally another afternoon. Skin tests were negative for all food allergies. Blood test for dairy will be back in a few days.

 

More confusion. But I still feel like we are peeling away the onion skin. the prozac has helped him stabilize a little bit in order to focus on some therapy. So that has been very helpful. It has also improved his mood a bit, so he is easier to deal with.

[lmkmip67]

Interesting. I will be curious to see how this new combination affects Ian. At this point I am really interesting in finding the pieces of the puzzle. Ian is doing ok right now with great help from the therapist as far as coping tools. So I am able to at least take a deep breath now and again. But it is surely a big puzzle for so many of us. A lyme doctor is in our horizon too, I do believe.

[NancyD]

It is very difficult to get a positive on any Bartonella test. There is only one that I know of that has high sensitivity but with that test you need to be off all abx. Have you considered doing the A-Bart herbal challenge?

 

I highly recommend that you see an LLMD or an integrative MD who has expertise in treating TBIs. Bartonella can be very difficult to treat so you want to be with someone who really knows what s/he is doing. Someone who can guide you through detox and support of the liver and adrenals with the appropriate supplements. Very important.

 

Dyes would be the first thing I would eliminate from DS' diet. That would be the easiest to do and could have huge impact. Whenever my DD ingests any dye (even the slightest trace) it magnifies her symptoms ten-fold. Dyes must cross the BBB very quickly.

[LNN]

He is putting him on Augmenten, Zyth. and Bactrum. I don't love the idea of all those antibiotics, and I am not sure Ian will tolerate them. But I am willing to try for the 6 weeks. He has an idea of the next few things we will try if this doesn't do much. Next would be wheat free diet, then dye free diet, then yeast treatment. All done individually. I don't know. I am feeling overwhelmed again. i would honestly wonder if Ian didn't have regular OCD with a side of tics if this hadn't started right after strep. I keep thinking about seeing an integrative Dr. that also treats lyme, here locally. But I don't want to do more than one thing at a time. So I guess we will maybe see how this goes and try Dr. Bs ideas through the fall. If we are not getting anywhere we are going to have to go the local route with the doctor here. (Kara, I will call you this week!). The prozac is helping a bit, and I am very thrilled with our therapist currently. But when Ian goes off of Augmentin (we ran out for a few days, crossed signals for refill) he gets breakthrough vocal tics. Not much, but I know what they are. I have tested it a few times in the last couple of months. So I know there is something there. Anyway, so I am curious to learn more about bartonella. We won't know the results for a couple of weeks from that. But it is related to lyme, no? Or is it just associated with ticks, like lyme? Does anyone have experience with it, and if so, what treatment did you receive?

 

I don't think lyme is everyone's problem. But I do think that when someone doesn't follow the script and respond to other treatments, you need to suspect additional infections and/or chronic problems. I suppose I too would question whether your son had traditional OCD after all this, but you know he regresses without abx, so that's telling you something.

 

Bartonella is a separate infection carried by ticks. I think it's generally assumed that if you have bartonella, you probably have lyme too because one tick can carry multiple bacteria and transmit multiple diseases in one bite. Because lyme is so endemic in the Northeast, it's conventional wisdom that if you suspect Bartonella, you treat for lyme as well (which pretty much just means you use both an intracellular abx like zith combined with an extracellular abx like augmentin) plus something that is effective against bartonella (like bactrim). It's the "better safe than sorry" approach - assume both are present and treat accordingly.

 

My DS was dx'd with Bartonella despite a negative lab from Specialty Labs (now a division of Quest). He never had stretch marks or a rash. But the LLMDs tend to suspect Bartonella when the patient's symptoms are lopsided on the neuropsych symptoms and less physical symptoms. You can also have "neuro" lyme without Bartonella but I think the only difference this makes in treatment is a somewhat different mix of abx and herbal treatments.

 

My DS was given a bartonella dx despite a negative lab from Specialty Labs (now part of Quest). I found very little research or info on bartonella so it was always hard for me to know whether it fit him or not. Here's a blog by someone who had it - it may help a little http://www.benbrew.com/lb/lb.html. But like your son, DS was put on zith+augmentin (which did nothing) and then we added bactrim. Once we added that, the improvements were significant. If I had doubts about lyme going in, those doubts vanished once I saw his response to the triple combo. Within 3 weeks, he was improving in a way he never had before. It was like finally finding the right key to the lock. I knew then that even tho we had a long road ahead, we were on the right path.

 

So I think it's worth trying the 3 abx combo and giving it 6 weeks. Make sure you increase probiotics (we give 30 billion CFUs at bedtime) and give them at a time when digestion is slow, which reduces stomach acid that can kill the probiotics. Head over to the lyme forum and search on detox, since you may see herxing. My son's tics came back when he had a particularly hard time clearing toxins as the bacteria died off. He also got wicked angry as part of his herxes. Not fun, but we got thru it.

 

I understand the idea of only treating one thing at a time. But I would move yeast higher up on your list. You'll be giving 3 abx. Yeast becomes a real danger. So you may want to look into adding an anti-yeast component. We use garlic pills but there are other options. IMO, you can't push yeast off. It needs to be addressed at the same time as any treatment that uses abx. It doesn't lend itself to an orderly, scientific approach. Not that you have to use nystatin or diflucan. Just that I think you need to be watchful and use an anti-yeast supplement at the same time. In boys, yeast is much harder to detect and tends to show up as behavioral, at least in my experience.

 

I also encourage you to see an LLMD or integrative. This requires a doctor who specializes in this stuff.

[philamom]

Tick transmitted Bartonella behaves differently than other forms of Bartonella. Psychiatric symptoms are more prominent, and can be severe.

[SSS]

I got a positive for Bartonella Henselae from Igenex- have no memory of pulling off a tick or any rash-

I am almost certain I got it from taming a family of feral cats 15 years ago.

Watch out for cats.

Also, put dd7 back on antibiotics after being off for 2+ months, antibiotics for Lyme treatment, and last night noticed purple squiggly lines and blistered rash behind her neck

(Bartonella to me)

Took a picture.

[lmkmip67]

It is so confusing. With the negative lyme test, twice, I just assume we shouldn't push forward with lyme. But maybe we should. We will try this trio of antibiotics and see how he does. I do also think I will push the yeast up the list. I am sure Dr. B won't really mind that. I am curious on the outcome of this trio, and am excited to get started. Picking up the scripts later so we should start tomorrow. Can anyone tell me is the augmentin, zyth. and bactrim a standard lyme protocol? there are so many combos, I get so confused.

[philamom]

If ordering the Bartonella testing through Quest, be certain the doctor specifies it be done at Quest Diagnostics Nicholas Institute of Valencia (see website for details). This is what my daughter's LLMD uses on her. It is covered by our insurance.

 

www.specialtylabs.com

[LNN]

Lisa,

Just wanted to post this link to an article about bartonella symptoms in kids, written by my LLMD. He's near Hartford.http://naturalnutmeg.com/?p=1677

 

It's a general overview. May not answer all your questions, but at least the info is coming from a doctor.

[mommybee]

Hi-

 

This is my very first post but some of the stories I've read seem very familiar and I have a number of questions that you guys may be able to help me with. By way of background, my son was dx with Bartonella by Dr. Bouboulis because he was treated for Lyme with 3 weeks of doxy back in 2007 and is symptomatic (classic stretch mark rash, sore soles, headaches, neuropsych symptoms etc). His Igenex tests were negative, though he had some positive bands (including band 18 which is thought by some to be Lyme specific). He also has high strep titers that have risen steadily along with his level of anxiety. To complicate the picture further, he has been fighting an ear infection (positive culture) for over a year which, fingers crossed, may be be responding to oral abx. So here goes:

 

1. While Dr. B. has consulted with Dr. Jones, my son has never been seen by a Lyme specialist and I would welcome suggestiions about whether it would make sense for me to have him seen and if so, by whom?

 

2. What school accommodations should I be requesting? My son is in high school and has an I.E.P. (which is often not followed) that doesn't really provide the amount/kinds of supports he needs. In particular, tests have been dicey and because he often gets stuck, his grades are typically not a full reflection of his effort, ability or achievement. If any of those of you who have children who are in high school could let me know what kinds of test taking accomodations your child/children have, I'd be grateful.

 

3. We live in MA and I'm probably going to need to work with an advocate to force the teachers to follow the I.E.P. Any suggestions here would be welcomed as well.

 

Thanks very much.

[LNN]

1. While Dr. B. has consulted with Dr. Jones, my son has never been seen by a Lyme specialist and I would welcome suggestiions about whether it would make sense for me to have him seen and if so, by whom?

 

Yes, I think you should definitely see someone whose practice is focused on lyme - an LLMD (lyme literate MD). There are some Mass. moms here who can give you some doc names. Our LLMD has helped my kids (Pandas/lyme/bartonella/pyroluria/methylation issues) make amazing progress by looking at things beyond Pandas.

[NancyD]

Mommybee, you are welcome to email me. I live in MA. My DD16 has PANDAS/Lyme/Bartonella/MTHFR and has a fabulous out-of-district placement (she is also on an IEP). She can take additional time for tests if needed and can take tests in a small quiet room (although her class size is really small and no longer needs an accommodation). In earlier years she could have the option of taking tests orally. We have seen Dr. B but for IVIg but we see a great integrative MD in NY who has expertise in treating Lyme/co-infections, PANDAS, MTHFR, etc. I highly recommend you see Dr. J or another MD who has the expertise to treat TBIs.

 

Nancy

 

Hi-

 

This is my very first post but some of the stories I've read seem very familiar and I have a number of questions that you guys may be able to help me with. By way of background, my son was dx with Bartonella by Dr. Bouboulis because he was treated for Lyme with 3 weeks of doxy back in 2007 and is symptomatic (classic stretch mark rash, sore soles, headaches, neuropsych symptoms etc). His Igenex tests were negative, though he had some positive bands (including band 18 which is thought by some to be Lyme specific). He also has high strep titers that have risen steadily along with his level of anxiety. To complicate the picture further, he has been fighting an ear infection (positive culture) for over a year which, fingers crossed, may be be responding to oral abx. So here goes:

 

1. While Dr. B. has consulted with Dr. Jones, my son has never been seen by a Lyme specialist and I would welcome suggestiions about whether it would make sense for me to have him seen and if so, by whom?

 

2. What school accommodations should I be requesting? My son is in high school and has an I.E.P. (which is often not followed) that doesn't really provide the amount/kinds of supports he needs. In particular, tests have been dicey and because he often gets stuck, his grades are typically not a full reflection of his effort, ability or achievement. If any of those of you who have children who are in high school could let me know what kinds of test taking accomodations your child/children have, I'd be grateful.

 

3. We live in MA and I'm probably going to need to work with an advocate to force the teachers to follow the I.E.P. Any suggestions here would be welcomed as well.

 

Thanks very much.