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Bartonella Die OFF?


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In my dd7, die off looks like PANDAS, whatever that means.

Hyper, IRRITABLE, impulsive, vocal noises (or tics?) just to be irritating, not sleeping well- she will often 'take it out' on little sister- holds it together at school-

stomach pains. Anxiety. Her OCD has greatly improved, now it comes out by asking for verbal re-assurance about a situation- but manageable.

 

Sometimes a binder helps, taken 2-3 hours after meds, then make sure the bowels move.

All the other detox stuff- liver support - milk thistle, glutathione or pre-cursers, Epsom salt bath or cream, Burber drops, some homeopathic drainage, ibuprofen.

 

For me, first time I treated Bartonella for myself, I was on Levaquin for 7 weeks- it was bizarre. I felt like I pulled away from from family (depersonalization, I've heard it called)

wanted to be left alone, my legs hurt a lot- Bartonella can be quick to irritate me, too-

Anxiety as well -

I do see progress in myself, like I've mellowed out- I've even had both my Mother and MIL tell me in the last 6 months they feel closer to me, I'm more open. Calmed down.

Not always, lol, but....

 

Few thoughts on Bartonella.

 

Hang in there---

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In my dd7, die off looks like PANDAS, whatever that means.

Hyper, IRRITABLE, impulsive, vocal noises (or tics?) just to be irritating, not sleeping well- she will often 'take it out' on little sister- holds it together at school-

stomach pains. Anxiety. Her OCD has greatly improved, now it comes out by asking for verbal re-assurance about a situation- but manageable.

 

 

In a nutshell for us (minus the vocal tics). Also, frequent nightmares.

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Oh my gosh, thank you both for replying as I have been almost out of my mind lately with trying to figure out what has happened.

 

he was almost 75% better and then we did a tonsillectomy. For three days after tonsillectomy, he was fine. Day 3 the night, he slept 12 hours and then all heck has broken loose. It looks like PANDAS flare adn I thought well maybe even IV ancef didn't prevent flare. But maybe the stress of the surgery has allowed the bartonella to come out or more likely from what you are telling me, it is die off. We were on Rifampin 2 weeks before tonsillectomy and it seemed grand. Switched to Augmentin as per PANDA doc for 2 days until I saw Lyme person. I told her that Rifampin was so much nicer and so we went back on it. PLus she suspected bartonella even though he tested negative.

 

The panic that he experiences with OCD now is such a higher level and there is little that I can do to make it better. And because the panics related to OCD were happening at regular times, I was leaning towards die off.

 

He has die off a few hours after his zithromax 250 mg in the am but he has been on this dose for months. I give him Rifampin at night....did you know it can make you sleepy? I did not. Didn't seem to make my son but lyme pract. said it does and give it at night. This doesn't seem to cause die off at all. or maybe it has a different half life, absorption. I don't know. The witching hours seem to be at 830 and 330 but I cannot figure out what the 330 time relates to. I give him nothing before this.

 

This is some serious escalation in the "pandas" symptoms. I really have to talk to myself during them to keep calm even though he is full blown panic. I get so anxious myself because I can no longer "talk him" through the upsets these past days. Even though i do and say what I used to, he is still screaming the same thing over and over. he just has to work through it.

 

Charcoal is what we did today as well as epsoms salt bath.

 

I also note that there are times he can't find his words and he mumbles and this is happening in the mornings. Pretty bad separation anxiety again. okay, well in a way I feel better if this means we are killing off bartonella.

 

My son has limited expressive communication even though I know it is all in his brain. We had an incident on Day 4 after tonsillectomy where he was screaming in pain....pointing to his seemingly fine big toe joint. I know think that was burning pain that the bartonella people get. If anyone has insight on this, please share.

 

one thing after another is sometimes how it feels...since we just started this journey with autism and then Pandas. Within weeks later, we added lyme and bartonella.

Edited by Kimflow
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Kim,

you might want to check clostridia through great plains. My son did not have clostridia at the start of pandas/lyme, after a few months of abx he did and clostridia looks just like pandas in him. Flagyl calmed things down.

 

Also giving a very small amount of benadryl before bed in addtion to his 1 mg melatonin helped with reducing the leg attacks, histamine itching and overall anxiety the next morning. Also the LLMD said benadryl reduces anxiety in most of her patients that was her suggestion.

 

The separation anxiety sounds like PANDAS I think the T&A stirred up some bacteria. JMO.

 

But the detox protocols along with ibuprofen will hopefully bring him some relief soon. He is healing and dealing with increased antibodies, you could try enhansa in food to bring down inflammation as well. Natural calm helps my son also and eating. Keeping the blood sugar levels up. I feed my son six small meals a day or else he turns into a bear.

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hug2day...

Just wait until I add in the Diflucan on Monday...oh my...... Yes, I am betting we have a little of both going on...PANDAS and bartonella die off. However, even when he had strep and I did not know it, it was definitely not the same level and length of time he stays in panic re: OCD/anxiety.

he eats ALL day long....little snacks. Blood sugar should be good and I am happy to say that he is now eating meat again so I guess the throat is feeling pretty much better day 8 postop.

clostridia.....good point. When Ryan had high DHHPA, I always questioned whether he had clostridia because he never fit the picture. WIth Vanco. the levels did come down though. During that time with high DHHPA, he was definitely not like this. His poops today are formed and dark. I have been giving Culturelle since the beginning. A little bit of steatorrhea ...I have been feeding him more fats since the coconut and egg yolks got removed due to food sensitivity testing. He was hungry.

The augmentin really messes with his poops....I have to say I hope we can stay away from that abx forever.

He has always responded negatively to H1 antihistamines...however, after reading pandas thread on pepcid, I want to try it. Only thing is LLMD, said give it once a day at bedtime and I can't as the rifampin must require stomach acid for proper absorption. What is it with kids with PANDAS ...alot of them are high histamine, low vitamin D. Is it all immune related/poor methylation related, I guess.

Anyhow, thanks for all the ideas.

Kim

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