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Bartonella Question


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before starting the bactrim and biaxin for the bartonella, she has some severe OCD. Some of it left, and SLEEP got so much better, but now she is obsessed with dying and being old. she researches all day long about how long people live. she asks over and over if she is old. she is so worried. She is not on full dose yet, and we have only been on it for 2 weeks or so. She is 12 and has been sick since birth. she also seems so sick and pale. am i too impatient? what am i expected to see at the beginning? please give me your thoughts. thanks. she just got over a steroid burst too, that may have set her back.

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before starting the bactrim and biaxin for the bartonella, she has some severe OCD. Some of it left, and SLEEP got so much better, but now she is obsessed with dying and being old. she researches all day long about how long people live. she asks over and over if she is old. she is so worried. She is not on full dose yet, and we have only been on it for 2 weeks or so. She is 12 and has been sick since birth. she also seems so sick and pale. am i too impatient? what am i expected to see at the beginning? please give me your thoughts. thanks. she just got over a steroid burst too, that may have set her back. is there something that i can give while waiting for the abx. to work. it is tough to watch her worry about dying all day long.

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I think two weeks is just begining of the healing. We can't help but be impatient; our kids have been sick a long time and we want them to keep moving fast forward. But, we can't force the healing. I've been following your story here and on the Pandas board, and I think she has come along way from when you first started posting. Could it be that death and dying have been bothering her for some time and she is only now well enough to vocalize it? Is there anything you can do to distract her from focusing on it constantly? You said she seems so sick and pale after the steroid burst, maybe she is herxing. That would be a good thing but it may take a while to see the good things come from it. (((hugs))) I have no answers, just thoughts to ponder.

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before starting the bactrim and biaxin for the bartonella, she has some severe OCD. Some of it left, and SLEEP got so much better, but now she is obsessed with dying and being old. she researches all day long about how long people live. she asks over and over if she is old. she is so worried. She is not on full dose yet, and we have only been on it for 2 weeks or so. She is 12 and has been sick since birth. she also seems so sick and pale. am i too impatient? what am i expected to see at the beginning? please give me your thoughts. thanks. she just got over a steroid burst too, that may have set her back. is there something that i can give while waiting for the abx. to work. it is tough to watch her worry about dying all day long.

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Hi Wilma

 

I have merged the 3 threads you made that all seem to ask the same question

 

It really is best to keep just one thread running on a specific question/topic to avoid confusion for you as well as other members

 

thanks

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before starting the bactrim and biaxin for the bartonella, she has some severe OCD. Some of it left, and SLEEP got so much better, but now she is obsessed with dying and being old. she researches all day long about how long people live. she asks over and over if she is old. she is so worried. She is not on full dose yet, and we have only been on it for 2 weeks or so. She is 12 and has been sick since birth. she also seems so sick and pale. am i too impatient? what am i expected to see at the beginning? please give me your thoughts. thanks. she just got over a steroid burst too, that may have set her back.

 

 

I think it takes a long time to get rid of Bartonella. I was told at least four or five months when we were treated. I have also read that Bartonella is more difficult than lyme to get rid of. We did not have the psychiatric symptoms but bartonella is notorious for psychiatric symptoms out of proportion to the other symptoms (aches and pains etc.). I was recently reading Dr. Schaller's book about Babesia and he has a psychiatric symptom list for TBDs that is more detailed than any I have seen before. ("eccentric obsessiveness, rigidity, poor self awareness and poor insight, stress with transitions or change, wired intensity,... etc.) There were many more symptoms but those are a few that relate to what you describe. The holistic MDs I know are very opposed to steroids b/c they believe they can have a really negative effect. I am no expert on this but since you are looking for our thoughts I know my doctors have said absolutely NO steroids. I would suspect that her symptoms are either part herx and part steroid effects. My son who was very sick with lyme had an eye irritation recently and they wanted to give him steroid drops in his eye and I said no b/c I don't want to take a chance that it would bring back the lyme. Steroid eye drops might be ok b/c they are not systemic but I get the feeling that they just hand them out when they don't know what else to do. We opted for allergy drops and his eye is looking better. I just don't want to deal with steroids at all if we can avoid them. Its a long tough battle to get rid of any of these diseases so hang in there. If your daughter has been sick since birth it will take a while. Good luck. You will likely see more improvements when she is on the full dose.

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Lyme mom

is a book about babesia going to help me if she is possitive for bartonaella? arent' they differesnt? i will get the book if it is simialr. thanks so much. there were a couple of other books i want to get. i think one is "cure unknow" and i can't reamember the other one. is there another that would help with understanding bartonella?

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Wilma,

My dd is being treated for Lyme and Bartonella too. The first month of treatment she showed improvements. (enjoy them while you can) I hate to make you worry more, but I want you to be prepared for possible worsenning.

 

One month into treatment my dd worsened considerably. I believe it has to do with the cylcic nature of the disease and her inability to detoxify quickly enough. (we upped detox at that time) It felt like a never ending herx and there was no remitting until two weeks after her second IVIG after beginning Lyme treatment.

 

It was 16 weeks after beginning Lyme treatment that we saw additional improvement. We also upped psych meds in that time frame, but not until after I saw some improvements. I feel that for my daughter, the psych meds help (Celexa) but I also feel like she is improving, FINALLY!

 

When you have had LYme/Bart for a long time, it takes a long time to get well. Obviously, some kids improve more quickly than others and I pray that your dd is one of the lucky ones. You just have to know you are in great hands with Dr. J and he will do all he can to get your dd well.

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when did you know to do the ivig? did dr. jones suggest it? should i do it now??? i also have an appointment wtih dr. brainsfeld in redbank nj, to help with psych. drugs. thanks for the warning. i am a bit scared.

Wilma,

I think you said Dr. Jones said he feels your child doesn't have PANDAS, right? I'm not sure if she would be a candidate for IVIG if there is nothing autoimmune going on. Does she have an elevated C3d or anything else that makes you think there is an autoimmune reaction going on?

 

My dd has had a total of 6 high dose IVIG with Dr. B. It wasn't until after the 4th one that we realized she also had LYme/bartonella. Both Dr. J and Dr. B feel that in my dd's case that IVIG is beneficial. (as do I from how it has affected her)

 

I really think each case is individual and you have to put some trust in the doctors you have chosen. I still double check everything and read all I can about everyone else's kids and ask questions and make suggestions, if I feel they are needed, but I have to trust them on some level or I'd go crazy.

 

 

Have you seen a LLMD for yourself yet?

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I for sure am trusting them. I think they finally found out what is wrong with my child. Dr. Jones said we may look at IVIG, after we see how she responds to the Abx.

Just asking questions. She is looking pretty good except for the one thought she has ALL day long about not wanting to grow up. Doctor Jones has us seeing Dr. Bransfield in NJ, to see what he has to say.

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I for sure am trusting them. I think they finally found out what is wrong with my child. Dr. Jones said we may look at IVIG, after we see how she responds to the Abx.

Just asking questions. She is looking pretty good except for the one thought she has ALL day long about not wanting to grow up. Doctor Jones has us seeing Dr. Bransfield in NJ, to see what he has to say.

Thinking of you Wilma and wishing you and your dd the best of luck.

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Wilma.....it was two weeks into antibiotic treament when my kid's OCD symptoms suddenly ramped up after months in hiding. I think this is normal and it does get better. Four months into treatment and see a big difference. DD12 and DS10 both PANDAS, Lyme, Bartonella, OCD. Hang in there!

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I for sure am trusting them. I think they finally found out what is wrong with my child. Dr. Jones said we may look at IVIG, after we see how she responds to the Abx.

Just asking questions. She is looking pretty good except for the one thought she has ALL day long about not wanting to grow up. Doctor Jones has us seeing Dr. Bransfield in NJ, to see what he has to say.

 

My 8 yr old does this too, not all day long, but it is one of her triggers. She will cry about not wanting to grow up, get old, etc. I always know when she does not feel good because of this or her food OCD. Hang in there.

 

Susan

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