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Still Trying to digest our appt. with Dr.J


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Good morning folks,

 

Just took Dd6 for our long awaited Dr.J appt. last Friday. IGenex labs from August indicate she is positive for Lyme & Bartonella. Dr. B has had her on a Azithromycin / Cipro combination since August. Earlier this month he switched her Cipro to Omnicef. She is also taking Lamisil daily. Dr.J has added Rifampin & Nystatin. Does this sound right? Aren't Nystatin & Lamisil both treating yeast? She also takes a chewable probiotic daily.

 

Any recommendations or feedback would be greatly appreciated! We haven't added in the Rifampin or Nystatin yet so not sure what to expect as we treat the Bartonella.

 

Thanks !

 

Teri

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I'm sure it's a lot to take in. Try to look at it as being on the road to recovery. Which I am sure you are! My daughter is on combo antibiotics and she takes both nystatin and diflucan. The nystatin is 3 times a day and the diflucan is 1-2 times per week. We also use grapefuit seed extract or garlic capsules to help with yeast also. When you get on the high dose of combo antibiotics, yeast can be a problem. We use high dose probiotics too. It's been a while since we tested for yeast but I suspect we go back and forth with it. I can sometimes tell with her behavior and I will get more aggressive with diflucan and supplements and then she seems to calm down. I would stay on top of the yeast treatment. Sounds like you have a good combination with the antibiotics. Make sure you do some good detoxing. Best of luck.

 

Dedee

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Thx for the replies landamom and Deedee! Picking up the Nystatin & Rifampin this afternoon. Hoping to start Dd on them tomorrow . She starts her Spring Break after tomorrow so I will be able to really observe any changes. Wondering if we see herxing and not sure what to expect from that.

 

As far as detox goes I must admit I don't know too much about it or where to begin. I am still giving her daily Ibuprofen which we have been doing since before her last flair which was nearly a month ago. It is obvious that she needs a second dose by 5 pm - but I would like to get away from that as it cannot be good for her. Any other suggestions for an anti-inflammatory ?

 

She is on her way to healing - but it's been a long and bumpy journey ! Thx for the support!

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Teri- my dd did herx from the nystatin. Not yeasty symptoms (giddy, hyper), but more feeling overall crappy - didn't want to get off the couch for a week, emotional, etc. This was from one pill. We still need to increase the dosage. Just thought I would share.

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Rifampin is a very old antibiotic and a must have when dealing with Bartonella. It must be used in connection with a broad spectrum drug to be effective against Bart. I believe it works by blocking replication of the organism. Don't quote me on that. Expect to see a ramp up of symptoms in the first couple of weeks and then things should get better.

 

Best of luck to you.

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i was scared of Rifampin too and since DD tested negative for Bart I held off. Her symptoms were screaming Bart so I bit the bullet and started it over Thanksgiving when I could monitor her. She definitely had a herx flare the fisrt day or so. But I was absolutely floored when 4 days after starting strtech marks cropped up on her arm (she is thin/average weight and like 16 BMI so they are no way from being overweight) and I was so thankful we had started treatment. It is really important to check liver/CBC weekly for the first month and bi-weekly or monthly thereafter depending on the results. My LLMD gave me a scrip for Lidocaine so I put that on 30 minutes before I take her to the lab. If Dr J has not given you a scrip for that please call his office and insist. My LLMD was very insistent on this bloodwork to monitor liver. Also recommend Milk Thistle for liver care. Gaia makes a low alcohol drop you can put into liquid. DD is taking ~200Mg/day. DD has had some dips in WBC/absolute neutrophils while on Rifampin but we just test and monitor and they have been low but ok. I am very happy with the results so far and am actually thinking of upping DD's rifampin dose. What dose is your DD on?

Edited by Hopeny
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i was scared of Rifampin too and since DD tested negative for Bart I held off. Her symptoms were screaming Bart so I bit the bullet and started it over Thanksgiving when I could monitor her. She definitely had a herx flare the fisrt day or so. But I was absolutely floored when 4 days after starting strtech marks cropped up on her arm (she is thin/average weight and like 16 BMI so they are no way from being overweight) and I was so thankful we had started treatment. It is really important to check liver/CBC weekly for the first month and bi-weekly or monthly thereafter depending on the results. My LLMD gave me a scrip for Lidocaine so I put that on 30 minutes before I take her to the lab. If Dr J has not given you a scrip for that please call his office and insist. My LLMD was very insistent on this bloodwork to monitor liver. Also recommend Milk Thistle for liver care. Gaia makes a low alcohol drop you can put into liquid. DD is taking ~200Mg/day. DD has had some dips in WBC/absolute neutrophils while on Rifampin but we just test and monitor and they have been low but ok. I am very happy with the results so far and am actually thinking of upping DD's rifampin dose. What dose is your DD on?

 

 

Well picked up the Rifampin & Nystatin on Friday morning. Friday afternoon I had to pick up Dd from school as she had vomited twice in school. Btw I think this is only the 2nd time that she has ever thrown up and she is 6.5. She has some kind of stomach bug which has been going around. Luckily her stomach is feeling better, she is eating a bit, and she is sleeping a lot.

I think I will wait until Monday to start the new meds. Dd will not be thrilled with the amount & frequency of medications she will soon have to take.

 

Dr.B has us doing monthly labs to monitor liver function but I am concerned about liver care & detox. We have never had lidocaine but by now Dd is getting use to bloodwork. Dr.J has prescribed 150mg 2x per day for the Rifampin. Dd is petite - just hit 40lbs this month. ? i hope its not too much! Wondering if I should start off slow?? I read up on Milk Thistle and not sure dd can take it as she has many allergies including grasses, pollen, and weeds.?

 

Still trying to figure this all out,

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My DD9 65 pounds is on 75 MG Rifampin 2x/day. We are going to go up to 150 MG 2x/day. Dr. told me the dose for kids is 10-20 MG/KG so it seems like you are on the higher end. you may want to call Dr. J. to ask if you can start a bit lower and work up to 150, though as Dr J is a pediatrician I do have confidence in him in regards to dosing. The more Lyme literature I read the more I see Rifampin is really efefctive not just for Bart but i also read last night it attacks the cystic form of Lyme too, it seems like it is really great med. I don't see any harm in asking Dr. J. or Dr. B,.for a standing order for bloodwork up to weekly, just for the first month. I take my DD right to the Quest lab with an appt made online and it is pretty easy and gives me a comfort level. It sounds like milk thistle is not for your DD in regards to the allergies, I am sure there are other good liver detox remedies others can suggest. Good luck.

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