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Anyone else's child on rifampin? This is powerful stuff.


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I was told that the first two weeks are usually the worst. Wow, so true. I hope this lasts only the 2 weeks or so. Please!!!! If it doesn't I don't think I could bear to see my son suffer to much longer than that. This has brought on some symptoms and made others intensive.

 

I would love to hear positive outcomes from adding this to the mix, adult and child. Keeping my fingers crossed. kathy

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:angry:Kathy,

 

just wondering, did the doc in Albany start this? and why this med? wondering if it might benefit my little guy.

 

thanks.

 

sorry to hear it's a rough treatment :angry:

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2 of 3 children are on Rifampin and our other child will rotate to it next Monday after the in-laws leave. The herx response can be rather intense and we want to avoid subjecting the grandparents to the potential response.

 

Unfortunately, I do not have good answer on how long the symptoms will be intense for your son. I believe a lot depends on how highly co-infected he is and what infection you are hitting. So, you can either push through and load up on detox or back off treatment to decrease potential die-off and symptoms. BUT, the obvious response should be noted for future reference and provide clues for your Dr. as to how your child is infected. Again, if it is too much you can always revisit the rifampin at a later date when bacterial load is down.

 

I'd like to say Lyme treatment is not easy and the first six month to a year of treatment can be rough. Herx's can last weeks. We've had one last as long as 12 weeks and our son had already been treated for PANDAS (3 hdIVIGs) for one year when this happened. Most recently a cough cropped up from rotation on Jan. 2nd and is still with us.... 'almost resolved'. Children can make sudden regression when they've advanced extremely well with treatment..... often leaving the parent wondering if its a new infection, chronic infection getting ahead of current protocol or a co-infection taking predominance. I feel it is vitally important to have a good LLMD and be in front of that Dr. every 6 weeks initially to hold your hand through the rocky ride. They will help you problem solve these rough episodes until you gain your confidence and your son makes progress.

 

I believe you are still waiting for initial appointment, correct?

 

-Wendy

Edited by SF Mom
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Yes, our appt is 3/31.

The peds and I started the rifampin a week ago. My peds saw his bartonella rash and son has been on cefdinir since end of Jan so we thought we would add rif and go back on zith. Interesting thing when we started rif, the first few days were so positive. It gave me a look into how things could possibly be after. I hope. The appt I have is with a Pediatrician who had lyme herself and is rec by ILADS. She did work under Dr.J of CT for several months. I may or may not like her approach. I do have an appt with Dr.J in April just in case. I only know that DR.J uses rifampin for bartonella from what I have read. Not trying to be my sons doctor, tired of steering this ship for 2 1/2 years, but just wanted to get started.

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Yes, our appt is 3/31.

The peds and I started the rifampin a week ago. My peds saw his bartonella rash and son has been on cefdinir since end of Jan so we thought we would add rif and go back on zith. Interesting thing when we started rif, the first few days were so positive. It gave me a look into how things could possibly be after. I hope. The appt I have is with a Pediatrician who had lyme herself and is rec by ILADS. She did work under Dr.J of CT for several months. I may or may not like her approach. I do have an appt with Dr.J in April just in case. I only know that DR.J uses rifampin for bartonella from what I have read. Not trying to be my sons doctor, tired of steering this ship for 2 1/2 years, but just wanted to get started.

y

Edited by philamom
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Sounds like a great plan and I look forward to hearing the update after first appointment.

 

Philamom is correct, each Dr. will have preferences in antibiotics and not all children will be treated identical for each infection. We are using the rifampin/cedax combo to go after bartonella. We too have noticed a honeymoon period within the first 48 hours of rotation when things seem great... unfortunately, then the herx typically sets.

 

-Wendy

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Hi Lismom,

 

I know not every child responds the same but I can give you some hope. DD9 dx'd w/ PANDAS last May. DS6 dx'd 3 wks later which blew my mind! I thought one sick child was too much to handle but 2? It seems unimaginable! My daughter's was sudden after multiple stubborn strep infections and T & A surgery. It just seemed like classic PANDAS. I had tunnel vision and went right for the big gun PANDAS Dr's. My DS seems to have had underlying Lyme issues since birth...collick, terrible reflux, major milk/soy protein intolerance (had to special order formula that was broken down to amino acids or he had vomitting and major colitis), joint pain on and off (we couldn't tell if he was just being difficult when he didn't want to climb the stairs to bed but dr's told us it was just growing pains.), didn't like being dirty (I remember making him jump in mud puddles one day to--exposure therapy???), multiple infections (sinus, croup, ear--tubes at 7 months old) and just an overall feeling of discontentment at times throughout childhood. I believe the Zithromax ped Dr. used to put him on for infections helped keep the symptoms at bay. So you can see, 2 kids w/ 2 different presentations.

 

We battled only PANDAS for 6 months and never made enough gains. Dr's kept saying they were negative for Lyme, but I had that gnawing feeling in my gut it was. I too got sick w/ it after the flu vaccine so as things became crystal clear, we got to a great LLMD and got answers. So far we know PANDAS/Lyme/Bartonella. They were already on Augmentin and Zithro from PANDAS Dr. but Rifampin was added in by LLMD. It was the best thing we ever added to meds. At the same time Diflucan was added for yeast so that may have aided recovery too. I will tell you, we had the worst Thanksgiving ever. We were all falling apart. I was so sick and DH and I were trying to care for 2 kids who were getting worse as the Rifampin kicked in. I literally remember having DD on the staircase crawling and crying/melting that she couldn't stop crying and things were eating her brain and my son having major rage and opposition. I was taking one to one bathroom for epsom salt bath and my DH was taking the other to the other tub. The meltdowns could last from 30-90 mins and it felt like they would never end. Common symptoms worsened and others were popping up. The feeling of electric currents going from elbow to hands, hip pain, stomach pain, etc. It was horrific. My DD couldn't attend school. At the time, I knew it could be/probably was herxing, but still in the back of my head I was thinking, "What if it's not and they are never going to get better? How do you watch this daily?" It was so unfair for kids to feel this way. I'd say after a week or two it got somewhat better and within 4 wks, it was even better. Every week has gotten better and then we'll have a setback w/ a med change or increase of mg's. By the time we got in w/ Dr. J in Feb., he was so happy to hear they were put on Rifampin and other meds b/f he saw them. He could see the progress in them compared to how we described them in the past. They aren't 100% yet but if things never get better than they are right now, it's good!...but that's while on tons of meds so we are all still healing!

 

Our LLMD in MD we first saw and still see is great but Dr. J tweaked a few things on the kids. He felt taking Rifampin only during the weekdays in the evening wasn't enough. He switched it to everyday and 2x/day. Our LLMD in MD was fine w/ the switch and supported it and I can tell you they herxed w/ that change for sure but got them even closer to healing point. My DD's teacher is amazed at her transformation and the difference was addressing the Lyme and Bartonella b/c PANDAS protocol only wasn't getting us anywhere fast! I am so grateful to this forum for educating me daily and for making me question the PANDAS dr's who kept saying, "No, they don't have Lyme. Their Western Blots are negative." The one PANDAS dr. to this day is SHOCKED that we all have Lyme and thinks it's very rare...he had some weird OCD/hoarding habits himself that made me want to tell him to visit an LLMD! LOL! :P

 

So keep plugging away at what you are doing. Of course IF it's too much adjust like SF Mom said. As my LLMD tells me, "Slow and steady wins the race. Lyme isn't a 100 meter dash, it's a 26 mile marathon!" He tells me that whenever I get ahead of myself and say, "So when will I be done w/ meds?!"

 

Good luck!

Edited by kmom
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Hi Lismom,

 

I know not every child responds the same but I can give you some hope. DD9 dx'd w/ PANDAS last May. DS6 dx'd 3 wks later which blew my mind! I thought one sick child was too much to handle but 2? It seems unimaginable! My daughter's was sudden after multiple stubborn strep infections and T & A surgery. It just seemed like classic PANDAS. I had tunnel vision and went right for the big gun PANDAS Dr's. My DS seems to have had underlying Lyme issues since birth...collick, terrible reflux, major milk/soy protein intolerance (had to special order formula that was broken down to amino acids or he had vomitting and major colitis), joint pain on and off (we couldn't tell if he was just being difficult when he didn't want to climb the stairs to bed but dr's told us it was just growing pains.), didn't like being dirty (I remember making him jump in mud puddles one day to--exposure therapy???), multiple infections (sinus, croup, ear--tubes at 7 months old) and just an overall feeling of discontentment at times throughout childhood. I believe the Zithromax ped Dr. used to put him on for infections helped keep the symptoms at bay. So you can see, 2 kids w/ 2 different presentations.

 

We battled only PANDAS for 6 months and never made enough gains. Dr's kept saying they were negative for Lyme, but I had that gnawing feeling in my gut it was. I too got sick w/ it after the flu vaccine so as things became crystal clear, we got to a great LLMD and got answers. So far we know PANDAS/Lyme/Bartonella. They were already on Augmentin and Zithro from PANDAS Dr. but Rifampin was added in by LLMD. It was the best thing we ever added to meds. At the same time Diflucan was added for yeast so that may have aided recovery too. I will tell you, we had the worst Thanksgiving ever. We were all falling apart. I was so sick and DH and I were trying to care for 2 kids who were getting worse as the Rifampin kicked in. I literally remember having DD on the staircase crawling and crying/melting that she couldn't stop crying and things were eating her brain and my son having major rage and opposition. I was taking one to one bathroom for epsom salt bath and my DH was taking the other to the other tub. The meltdowns could last from 30-90 mins and it felt like they would never end. Common symptoms worsened and others were popping up. The feeling of electric currents going from elbow to hands, hip pain, stomach pain, etc. It was horrific. My DD couldn't attend school. At the time, I knew it could be/probably was herxing, but still in the back of my head I was thinking, "What if it's not and they are never going to get better? How do you watch this daily?" It was so unfair for kids to feel this way. I'd say after a week or two it got somewhat better and within 4 wks, it was even better. Every week has gotten better and then we'll have a setback w/ a med change or increase of mg's. By the time we got in w/ Dr. J in Feb., he was so happy to hear they were put on Rifampin and other meds b/f he saw them. He could see the progress in them compared to how we described them in the past. They aren't 100% yet but if things never get better than they are right now, it's good!...but that's while on tons of meds so we are all still healing!

 

Our LLMD in MD we first saw and still see is great but Dr. J tweaked a few things on the kids. He felt taking Rifampin only during the weekdays in the evening wasn't enough. He switched it to everyday and 2x/day. Our LLMD in MD was fine w/ the switch and supported it and I can tell you they herxed w/ that change for sure but got them even closer to healing point. My DD's teacher is amazed at her transformation and the difference was addressing the Lyme and Bartonella b/c PANDAS protocol only wasn't getting us anywhere fast! I am so grateful to this forum for educating me daily and for making me question the PANDAS dr's who kept saying, "No, they don't have Lyme. Their Western Blots are negative." The one PANDAS dr. to this day is SHOCKED that we all have Lyme and thinks it's very rare...he had some weird OCD/hoarding habits himself that made me want to tell him to visit an LLMD! LOL! :P

 

So keep plugging away at what you are doing. Of course IF it's too much adjust like SF Mom said. As my LLMD tells me, "Slow and steady wins the race. Lyme isn't a 100 meter dash, it's a 26 mile marathon!" He tells me that whenever I get ahead of myself and say, "So when will I be done w/ meds?!"

 

Good luck!

 

 

 

Wow, thanks for taking the time to tell your story. Very inspirational.

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Yes, our appt is 3/31.

The peds and I started the rifampin a week ago. My peds saw his bartonella rash and son has been on cefdinir since end of Jan so we thought we would add rif and go back on zith. Interesting thing when we started rif, the first few days were so positive. It gave me a look into how things could possibly be after. I hope. The appt I have is with a Pediatrician who had lyme herself and is rec by ILADS. She did work under Dr.J of CT for several months. I may or may not like her approach. I do have an appt with Dr.J in April just in case. I only know that DR.J uses rifampin for bartonella from what I have read. Not trying to be my sons doctor, tired of steering this ship for 2 1/2 years, but just wanted to get started.

My twins have pandas and typical treatment antibiotics/ivig didn't get us to a place where I would like to be. I took my son to see Dr. J, he was negative on igenex but is being treated for bartonella. We were on azithromycin 2x a day and omnicef 1x, dr. J added rifampin 2x a day....I then asked about a cyst Buster from reading on the forum, ty members.... And so he added tindamax twice a day for two consecutive days every week. Right now we are in ######... My son is so Opositional, nasty and screaming tantrums when things aren't as he likes, ocd off the wall. I'm waiting for the day I can say wow I see positive improvement. We are in our sixth week of lyme treatment. My daughter who tested positive on igm has same treatment, she too is impossible in a different way. She has yet to see Dr. J. Appointment in beginning of June. I'm so frustrated already.

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My twins have pandas and typical treatment antibiotics/ivig didn't get us to a place where I would like to be. I took my son to see Dr. J, he was negative on igenex but is being treated for bartonella. We were on azithromycin 2x a day and omnicef 1x, dr. J added rifampin 2x a day....I then asked about a cyst Buster from reading on the forum, ty members.... And so he added tindamax twice a day for two consecutive days every week. Right now we are in ######... My son is so Opositional, nasty and screaming tantrums when things aren't as he likes, ocd off the wall. I'm waiting for the day I can say wow I see positive improvement. We are in our sixth week of lyme treatment. My daughter who tested positive on igm has same treatment, she too is impossible in a different way. She has yet to see Dr. J. Appointment in beginning of June. I'm so frustrated already.

6 weeks is a long time to try to manage this with two kids. You may want to consider asking DR J about backing off the tindamax and adding it back in later if it starts to be more than your family can handle. For the longest time, during this whole Pandas/lyme battle, I've always thought I could/would handle whatever came our way, so long as it got my kids healthy. I now realize I've suffered some collateral damage and while my son has no memory of his horrible tics and meltdowns, they haunt me on a regular basis. So don't feel you have to kill it all in one fell swoop. Consider the effects on your whole family and pace yourselves.

 

If you're not doing a lot of detox, you can consider adding alpha-lipoic acid, glutathione, charcoal, clay or maybe some other things I'm not familiar with. I hope you start to see enough improvement to lift your spirits and help you keep going.

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thank you LLM, is 6 weeks a long time without seeing positive results? you think the tindamax, causes the odd and ocd? my son complaining again of not feeling well and throat hurting. I'm wondering now if his tonsils shouldn't be removed. When do people start to see improvement? sometimes I feel like nothing will improve things. Sigh

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thank you LLM, is 6 weeks a long time without seeing positive results? you think the tindamax, causes the odd and ocd? my son complaining again of not feeling well and throat hurting. I'm wondering now if his tonsils shouldn't be removed. When do people start to see improvement? sometimes I feel like nothing will improve things. Sigh

I don't know if 6 weeks is long in terms of lyme expectations, but it's a lifetime when it comes to coping with ODD and OCD! I'm far from well-versed in lyme treatment - seems there are as many protocols/philosophies as there are chili recipes at a chili cook-off. But we just weathered a bad herx last week starting omnicef and in my PTSD state, it took me back to places I never wanted to deal with again. We're supposed to start tindamax this coming weekend. Nervous...

 

It seems that in a bad herx, you can have a lot of self-doubt, not at all sure if what you're seeing is herxing or just that the lyme stuff is rampant and the abx are doing absolutely nothing. There's really no way to tell the difference when you're in the middle of it.

 

What seemed to help for us was detox. We were already doing glutathione and fiber to encourage daily BMs, lots of water, but out of desperation on Friday night (it's always when the doctor's office is closed), I went to the health food store and got some milk thistle. I don't know if it was that or simply a matter of time, but the weekend was much much better. DS was acutally NICE to his sister, which happens about twice a year. And the issue that brought a 30 min meltdown on Friday was handled in a normal kid way yesterday. So for your own sanity and the health of the rest of your family, I'd do some reading up on detox options.

 

As for the T&A - not sure what to say. Depends on whether he's really getting strep/infections or if it's just a symptom. My son had a T&A two years ago for Pandas and hasn't had strep since. But even now, he'll wake up complaining of a sore throat and one gland will be swollen (asymmetrical lymph node swelling is a bartonella thing). It usually goes away as the day goes on and he's vertical. But if your think it's a real infection, then it might be worth discussing with your LLMD.

 

I did find it helpful to do some ERP and CBT - as much to help me cope as DS. It gave me a sense that I had an emergency plan and we were able to go to a comfort zone, knowing that we had tools that would help us survive. It was the abx/detox that ultimately brought the OCD stuff down, but it helped to have roles we knew how to play in the meantime.

 

I hope you see some improvements soon. You must all be exhausted.

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