Lyme/Bart.-How soon did you see improvement?

[MamaOnAMission]

Just getting up to full dose. Can you tell me how soon you saw any kind of improvement in your child while treating for Bart/Lyme? Please tell me how long you saw die-off last?

[ShaesMom]

I would guess it took about six months to see improvement in my 12 yr old and myself. I am still battling lingering stuff almost a year later but he is almost done with treatment.

 

FYI-12 yr old is not the PANDAS/Lyme child.

Edited October 23, 2012 by ShaesMom

[MamaOnAMission]

did the medicine make him aggressive and hyper at first? please tell me what it was like at the beginning?

[momcap]

did the medicine make him aggressive and hyper at first? please tell me what it was like at the beginning?

 

I can tell you what it was like for us. My PANDAS DS9 was treated for bart early this year, while also being treated for lyme. We started with bactrim and it made him agitated and extremely aggressive. We finally gave up bactrim and moved to rifampin. Here are my journal notes from when he started Rifampin for bart.

Day 1(1/2 dose) - Great day! Unusually good!

Day 2 - can't wake up, "too weak to stand", sensory overload, binge eating, can't sleep

Day 3 - can't get up, yelling, angry, right knee pain is "flashing", DEFIANT!

Day 4 - Good behaviour day, tinging in foot then in hand, diarrhea

Day 5 - Really good! Tingling and diarrhea continues

Day 6(Upped to full dose) tingling and diarrhea

Day 7 - Really good, tingling continues, diarrhea stopped

Day 8 - extremely aggressive, fever of 102

Days 9 & 10 - fevered 103-104.5 all day and night, won't come down with motrin, pain in forehead and eyes, cough, bad diarrhea, "feels like I'm floating"

Day 11 - a.m. 101, fever broke in afternoon, extremely defiant and scary aggressive

Day 12 - extremely aggressive and mean

Day 13 - 6 a.m. hysterics, pain in both calf muscles, can't walk, crawled around all day, croupy cough

Days 14 & 15 - easily irritated, but no longer aggressive

Day 16 - visual disturbances, yellow ball looks "rainbow", "I saw the ball over there, but then I looked and it wasn't really there"

Day 17 - can't wake up, talking funny, not making sense, p.m. really good afternoon/evening, 11 p.m. sleepwalking, tried to go outside

Day 18 - confessing compulsions, fell asleep on his desk at school

From day 19 for 2 weeks - AMAZING, happy, calm, able to listen to music again after years of it bothering him, affectionate. Able to wear pants after wearing shorts year round for 2+ years. WOW! Also, itchy skin and drenching night sweats (detoxing?)

After 2 good weeks another horrendous week - leaking pee, aggressive, threats to kill us, manic, sensory issues, agitation, croupy cough, can't sleep, etc.

Then another 2 amazing weeks - happy, helpful, no OCD, chatty and affectionate

 

And this pattern continued with each bad period decreasing in length and intensity for 3 months. He made huge progress! Then he had a major relapse in June and we don't know why. We're still working through that today.

 

Hope that helps.

[MamaOnAMission]

momcap-

he was just taking rifampkin for the bart.? my doctor said it takes 2 abx. to treat the bart.

i am so sorry for the relapse. are you really discouraged or do you feel its just a blip and things will get back on track. what does doctor feel?

[momcap]

momcap-

he was just taking rifampkin for the bart.? my doctor said it takes 2 abx. to treat the bart.

i am so sorry for the relapse. are you really discouraged or do you feel its just a blip and things will get back on track. what does doctor feel?

 

DS was taking azithromycin and amoxicillin at this time for lyme/bart when we added rifampin. Plus prophlyactic nystatin for yeast overgrowth.

 

Yes, I am really discouraged right now. Mostly because our family doc is blocking us from continuing treatment by insisting it is unsafe. Our LLMD told us it might take another couple of years of treatment before DS would be well. I haven't given up hope yet, especially because we saw amazing success with the treatment we have done so far. We just have to jump through a few more hoops, maybe try another route, and somehow get family doc back on board.

 

Are you having any success with your daughter? I recall it has been a very rough road for you. Have you found a treatment that is starting to work?