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My child is psychotic. She is being treated for PANDAS. We just found she was positive for bartonella. Her PANDA specialist said the bartonella is what is causing the psychotic symptoms. Is bartonella considered Lyme disease. She was never near a tick, and she had these psychotic symptoms since birth. Does this mean the the Cam Kinase of 166 means it is not PANDAS and perhaps its just Bartonella now???

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Bartonella can be passed from mother to child just like lyme. It is usually, but not always, a co-infection with lyme. If she has this, it suppresses the immune system making it easy for these kids to get additional illnesses and harder for them to get rid of until the bartonella and lyme have been taken care of.

Edited by lismom
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I do not remember clearly everyone on here, but my memory of you is that there were strong indications of likely lyme (at least in my opinion). What other testing have you done besides CamK and the recent bartonella test? Any other key symptoms to mention?

 

You can have bartonella by itself, but when bartonella is there and there is a real problem, I think more frequently lyme will also be there (as lismom said above).

 

The CamK can be from lyme rather than PANDAS. Of course, there can be lyme and PANDAS together. Don't know if it can be just from bartonella.

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My son tested positive for Bartonella, but negative for Lyme. Our LLMD said it would be rare for him to have the Bartonella without Lyme and it would look different (in terms of symptoms/behaviors). So its likely she has Lyme. Our son has had issues since birth as well (although more subtle until the onset of PANDAS), and we suspect I had Lyme/Bartonella before he was born. I never saw a tick on myself, but had a mysterious rash a few years before my son was born. Right after he was born, I started getting sick and after two years had chronic fatigue, lots of pain in various places, severe insomnia, memory loss, and frequent severe illnesses.

 

Lyme/Bartonella and PANDAS are not mutually exclusive. Its not one or the other, but if she has Bartonella, and possibly Lyme, you need to take her to a very good LLMD. They can also treat the strep issues and any other infections that are simmering. None of the PANDAS docs, to my knowledge, are fully versed in Lyme/coinfections.

 

Our son had a Cam Kinase of 152 - this does not rule out Lyme or any other chronic infection.

 

I believe you already saw a Lyme doc, but he wasn't that helpful? Is that right? If so, just find another one, and make sure he/she is ILADS-trained and get opinions from those on this forum before going to see them.

Edited by mama2alex
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My child is psychotic. She is being treated for PANDAS. We just found she was positive for bartonella. Her PANDA specialist said the bartonella is what is causing the psychotic symptoms. Is bartonella considered Lyme disease. She was never near a tick, and she had these psychotic symptoms since birth. Does this mean the the Cam Kinase of 166 means it is not PANDAS and perhaps its just Bartonella now???

The pandas may also be reacting to the Bartonella. There is definitely a link between Lyme and othe tick borne illness and pandas, IMO. Bartonella can also be passes from a scratch from a cat. What antibiotic is she taking for bartonella?

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Wilma,

My dd12 pandas, ocd, bartonella, mycoplasma and lyme. Cam Kinese of 178 (Dr. C said it was one of the highest she had seen without tics at the time). DS10, bartonella, pandas, ocd, rages, non-conclusive lyme. Cam Kinese 137 unexacerbated. I know C is working with Dr. J (as of 4 months ago) and there is some correlation bt lyme and cam kinase numbers. Bartonalla is bad......it has made my son very sick. Finally starting to see progress after 4 months of treatment and it is not huge progress but I count every small step with great jubilation!! I just think there's a lot we don't know. Both of my kids onset at age 7. Interestingly enough, my nephew also had age 7 onset - pandas and now lyme. Makes me wonder if there's genetic something and if Pandas and Lyme are similar in ways we don't yet know.

 

Such mysteries.....

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My child is psychotic. She is being treated for PANDAS. We just found she was positive for bartonella. Her PANDA specialist said the bartonella is what is causing the psychotic symptoms. Is bartonella considered Lyme disease. She was never near a tick, and she had these psychotic symptoms since birth. Does this mean the the Cam Kinase of 166 means it is not PANDAS and perhaps its just Bartonella now???

 

My short response: No. It can be both.

 

My long response:

 

Good question and probably no definitive answer. Bartonella is also known as Cat Scratch Fever. I remember that when my wife was pregnant, they wanted her to stay away from kitty litter duty as (apparently) bartonella can be transmitted via cat fecal matter. There are tens(?) of different bartonella strains as well. So - while your child could have picked it up from a tick, they could have picked it up elsewhere. Wikipedia states: "Bartonella are transmitted by insect vectors such as fleas, sand flies and mosquitoes." In my humble opinion, it will do no good trying to figure out how your child picked it up is my real point. It is good that you know and can begin appropriate treatment.

 

Our son's CaM Kinase II score was 126. That is on the low end for PANDAS. We started on the Pandas path and have ended up on the Lyme + co-infections path so I e-mailed Dr. Cunningham making sure she could include this in her studies. Her reply (in part): "His CaM score is so low that I suspect that the disease manifestations were primarily due to the infection alone and not as much to autoimmune responses, but we will also look at his anti-neuronal antibody titers to our 4 antigens." I do not have the background to fully understand the significance of her statement. Also, your child's score is well into PANDAS land as I recall so clearly different from my son.

 

Our LLMD noted that she equates raging (particularly raging) and OCD with bartonella.

 

Here is where my beliefs are taking me today....First, I do not know how one separates PANDAS symptoms from Lyme from co-infections. From everything I know and remember, there is a lot of overlap. I am falling more in the MCIDS - Multiple Chronic Infectious Disease Syndrome camp. If the strep bacteria is the only culprit then I guess one only has PANDAS. But for most of us, we are finding multiple infections. Many have immune system issues to one degree or another. Theory behind MCIDS is that each bacterial or I suppose viral infection weakens the immune system just a little bit more. There are differences in symptom displayed which I would attribute to genetics, age of infection(s), sequence of events, and moon phase ;) We will probably never know.

 

Since you have a positive for bartonella, I would recommend working with a lyme literate doctor. I have seen no indication that the leading PANDAS doctors really know how to handle lyme and co-infections. As far as I know, the treatments for lyme/bartonella might take care of strep along the way. I do not mean to imply that PANDAS treatments are not necessary. Each case is unique. I'm just a parent trying to find answers so please do not accept my word on that. Find a good LLMD!!

 

Having followed some of your post, I know that you have had a tough time - but you are hanging in there! Well - time to appreciate yourself and your tenacity, you've started finding real answers. As others have told me, this still won't be a quick fix (so hang on) but you have some real direction to proceed now.

 

I am thinking about writing my own book on our travels so I can print a dozen or so copies and give them as Christmas presents to all the doctors who did not believe us! Should I save a chapter (or ten) for your story?

 

Good luck!

 

bill

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Hi Wilma,

 

I'm assuming that Dr. B ordered the tests for you. Did he add any more antibiotis after getting the results? Did he say to stop the steroid?

 

My dd9 was diagnosed with PANDAS - 189 Cam K, negative throat culture put positive blood test for strep in spring 2010.

She did really well when she was put on Zithromax and by the summer was almost 100%. But she declined over the fall until she was almost as bad as last year during the winter months.

 

Dr. B had her tested for Lyme and co-infections. She came back positive for Bartonella as well (but not Lyme). Dr. B. put her on Bactrim in addition to the Zithromax. She has been improving since then - slow and bumpy, but definitely in the right direction.

 

Hopefully this diagnosis will help you get your daughter what she needs.

 

Best wishes,

Kara

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Half a walnut sized lump under her ear at ten days old.

Sinus infection on MRI.

Restless Leg Syndrome.

SEVERE insomnia laden with OCD (Do Lyme people get OCD, or is the PANDAS part?)

High clostridia

Cam Kinase of 166.

Not only OCD, but very odd psychotic behavour. Very distorted thinking.

 

Lyme doc. has her on steroid taper with bactrim at the moment. He wants to add in something called biacin (spelling?)

The bactrim makes insomnia much worse. Goes to sleep at 6am. Sleep deprivation does not help.

 

I made an appointment with Dr. Jones.

Dr. Beal in Maryland said the tests are not accurate and even if she tests possitive for bartonella, there is no way to know.

She is super super sick.

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Wilma,

What do you mean when you say that Dr. Beals said even if your daughter test positive there is no way to know??? That is strange. I don't understand.

 

I have a neighbor whose son is very sick with lyme, bartonella, mycoplasma, and babesia. He is 15 years old and was diagnosed with schizophrenia at the age of 11. It was only last year this time when we came to know one another and she tested her son for lyme disease. He has been in treatment for almost a year and is doing better but still has a long way to go. My point in sharing this story is that infections can induce psychotic behavior not just what you called OCD. I personally think it just depends on the severity of infection and length of time without treatment. It sounds like you have uncovered at least part of why your daughter is sick. I think it is good that you have an appointment with a lyme doctor as you want to make sure all infections are treated appropriately. I know your daughter's lyme test was negative but sometimes the sickest kids do not test positive untill they have been treated for a while...as their immunce system has been so supressed by the chronic infections.

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I do not remember clearly everyone on here, but my memory of you is that there were strong indications of likely lyme (at least in my opinion). What other testing have you done besides CamK and the recent bartonella test? Any other key symptoms to mention?

 

You can have bartonella by itself, but when bartonella is there and there is a real problem, I think more frequently lyme will also be there (as lismom said above).

 

The CamK can be from lyme rather than PANDAS. Of course, there can be lyme and PANDAS together. Don't know if it can be just from bartonella.

 

I have done the Lyme test, and then the "31" test, I think it's called. Then co-infections test. I did the Cam Kinase and tons of blood work. Lots of urine and blood tests. Are there any specifically that you think she should have?

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My child is psychotic. She is being treated for PANDAS. We just found she was positive for bartonella. Her PANDA specialist said the bartonella is what is causing the psychotic symptoms. Is bartonella considered Lyme disease. She was never near a tick, and she had these psychotic symptoms since birth. Does this mean the the Cam Kinase of 166 means it is not PANDAS and perhaps its just Bartonella now???

 

My short response: No. It can be both.

 

My long response:

 

Good question and probably no definitive answer. Bartonella is also known as Cat Scratch Fever. I remember that when my wife was pregnant, they wanted her to stay away from kitty litter duty as (apparently) bartonella can be transmitted via cat fecal matter. There are tens(?) of different bartonella strains as well. So - while your child could have picked it up from a tick, they could have picked it up elsewhere. Wikipedia states: "Bartonella are transmitted by insect vectors such as fleas, sand flies and mosquitoes." In my humble opinion, it will do no good trying to figure out how your child picked it up is my real point. It is good that you know and can begin appropriate treatment.

 

Our son's CaM Kinase II score was 126. That is on the low end for PANDAS. We started on the Pandas path and have ended up on the Lyme + co-infections path so I e-mailed Dr. Cunningham making sure she could include this in her studies. Her reply (in part): "His CaM score is so low that I suspect that the disease manifestations were primarily due to the infection alone and not as much to autoimmune responses, but we will also look at his anti-neuronal antibody titers to our 4 antigens." I do not have the background to fully understand the significance of her statement. Also, your child's score is well into PANDAS land as I recall so clearly different from my son.

 

Our LLMD noted that she equates raging (particularly raging) and OCD with bartonella.

 

Here is where my beliefs are taking me today....First, I do not know how one separates PANDAS symptoms from Lyme from co-infections. From everything I know and remember, there is a lot of overlap. I am falling more in the MCIDS - Multiple Chronic Infectious Disease Syndrome camp. If the strep bacteria is the only culprit then I guess one only has PANDAS. But for most of us, we are finding multiple infections. Many have immune system issues to one degree or another. Theory behind MCIDS is that each bacterial or I suppose viral infection weakens the immune system just a little bit more. There are differences in symptom displayed which I would attribute to genetics, age of infection(s), sequence of events, and moon phase ;) We will probably never know.

 

Since you have a positive for bartonella, I would recommend working with a lyme literate doctor. I have seen no indication that the leading PANDAS doctors really know how to handle lyme and co-infections. As far as I know, the treatments for lyme/bartonella might take care of strep along the way. I do not mean to imply that PANDAS treatments are not necessary. Each case is unique. I'm just a parent trying to find answers so please do not accept my word on that. Find a good LLMD!!

 

Having followed some of your post, I know that you have had a tough time - but you are hanging in there! Well - time to appreciate yourself and your tenacity, you've started finding real answers. As others have told me, this still won't be a quick fix (so hang on) but you have some real direction to proceed now.

 

I am thinking about writing my own book on our travels so I can print a dozen or so copies and give them as Christmas presents to all the doctors who did not believe us! Should I save a chapter (or ten) for your story?

 

Good luck!

 

bill

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This is what happened. Dr. B. is treating for PANDAS and pre-certifying us for IVIG. We had the LYme test done with Scott Smith and then followed up with Dr. Beals.

Co infections was never tested, and Dr. B. wanted it done. I called Dr. Beals to ask if it could still be done with left over blood at Igenix. Dr. Beal said even if we test for co-infections, it is only 50% accurate (i think that was the percentage.) and he did not encourage it. So, I did the test anyway... and it comes back possitive and Dr. B. wants to treat for Lyme now. I made an apointment with Dr. Jones. My girl is currently on bactrim and finishing up a steroid burst. The bactrim makes her insomnia and OCD worse at night so far. Perhaps it is die-off.

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Just curious what the actual numbers were for the Bartonella. My son is borderline for Bartonella based on an Igenix test that we just got back.

 

Thanks.

This is what happened. Dr. B. is treating for PANDAS and pre-certifying us for IVIG. We had the LYme test done with Scott Smith and then followed up with Dr. Beals.

Co infections was never tested, and Dr. B. wanted it done. I called Dr. Beals to ask if it could still be done with left over blood at Igenix. Dr. Beal said even if we test for co-infections, it is only 50% accurate (i think that was the percentage.) and he did not encourage it. So, I did the test anyway... and it comes back possitive and Dr. B. wants to treat for Lyme now. I made an apointment with Dr. Jones. My girl is currently on bactrim and finishing up a steroid burst. The bactrim makes her insomnia and OCD worse at night so far. Perhaps it is die-off.

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Just curious what the actual numbers were for the Bartonella. My son is borderline for Bartonella based on an Igenix test that we just got back.

 

Thanks.

This is what happened. Dr. B. is treating for PANDAS and pre-certifying us for IVIG. We had the LYme test done with Scott Smith and then followed up with Dr. Beals.

Co infections was never tested, and Dr. B. wanted it done. I called Dr. Beals to ask if it could still be done with left over blood at Igenix. Dr. Beal said even if we test for co-infections, it is only 50% accurate (i think that was the percentage.) and he did not encourage it. So, I did the test anyway... and it comes back possitive and Dr. B. wants to treat for Lyme now. I made an apointment with Dr. Jones. My girl is currently on bactrim and finishing up a steroid burst. The bactrim makes her insomnia and OCD worse at night so far. Perhaps it is die-off.

Our son was "just" positive on the bartonella titer. We never noticed rashes of any sort until we started going after it---his back became covered with the bartonella rashes. His behaviors/sx's plummetted right along with them!! Dawn

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