Rifampin

[norcalmom]

what side effects or or improvements or ANYTHING I should look for? We just switched DS from Doxy back to Azith and added Rifampin to the Azith (for a few weeks)- apparently it helps the Azith work better. (as well as doing its own thing). Doc casually mentioned it might turn his urine red, as well as his sweat and tears....anyone else experience this side effect? I'm wondering how common that is.

 

Thank you!

[Iowadawn]

My son's pee is reddish, he says. Very common side effect. I am not sure what is actually causing this, but it doesn't appear to be harmful. I think the liver needs closer monitoring. Rifampin is suppose to be very good at crossing the BBB. The doc added it to our mix with the appearance of bartonella scratches.

 

 

Dawn

[norcalmom]

My son's pee is reddish, he says. Very common side effect. I am not sure what is actually causing this, but it doesn't appear to be harmful. I think the liver needs closer monitoring. Rifampin is suppose to be very good at crossing the BBB. The doc added it to our mix with the appearance of bartonella scratches.

 

 

Dawn

 

Thanks Dawn! How often do you test your son't liver (is there a recommendation on what and when to test for?) My son's been on azith for over a year, and now we are adding this, so I think maybe we are due? No one has every said anything to use about doing this - but have read it (on here as well as in drug warning labels)

Edited March 12, 2011 by norcalmom

[kmom]

My kids were already on Augmentin and Azith for PANDAS. When Lyme and Bartonella was finally discovered in Nov. 2010, our LLMD added Rifampin into the mix. Wow!!! What a difference! The kids definitely herxed the 1st 2 weeks or so. We went backwards for sure. But then great things started to happen. OCD started to diminish. All symptoms started to retreat and we started getting back to how life was before all this mess. Mid Feb. we saw Dr. J as a 2nd opinion. He and our other LLMD are basically on the same page but Dr. J did up the Rifampin a bit. The kids were only taking it on weekdays at night. He suggested they take it AM and PM AND on weekends. He feels if you don't target Bartonella full force, the bugs become resistant. I have to say, it made things EVEN better! Again there was a more minor adjustment period (herx) but nothing major. Both LLMD's thought it was time to add Tindamax into the mix last month. We are introducing it slowly...just on weekends. We were on a dead end to nowhere on PANDAS treatment alone. Our LLMDs have made all the difference.

 

Oh and yes, the Rifampin does turn urine reddish orange. Not all day, mainly first urination of the day. When my kids 1st got the Rx, it was liquid and very red...looks like it would stain clothing for sure. We switched to pills then. Still same urination effect. I haven't noticed their tears or sweat discolored though. For us, Rifampin has been a turning point in their treatment.

[Iowadawn]

So--how is the Tindamax doing for you? I think that will be the next thing for our boy. I am not sure about the GSE. Dawn

Edited March 14, 2011 by Iowadawn

[sf_mom]

We are also starting Rifampin today for older DS..... chasing down bartonella. If the Rifampin kicks his current cough we'll start the process of rotating down and off antibiotics.

 

Younger DD has been on it for a while and also has orange pee first thing in a.m. but no other side effects.

 

-Wendy

Edited March 14, 2011 by SF Mom

[norcalmom]

It seems he may be having a ltitle herx, because he told me the new antibiotics are not working - and he's haveing minor tics and has wet his bed past 3 nights. Other symtoms stable. Could aslo be related to MAJOR stressful even last week for him - a blood draw. Poor kid actually wet himself he was so scared. Lydocaine on the arm and everything. 30-40 minutes for 3 nurses plus me to talk him into the chair and then of course the first try failed (that never happended before) and they had to poke around, and then take it out and try again) He informed me he actually peed his pants he was so scared wehn we got home. Kicked a nurse too. AGGGHHH -

 

Our LLMD is supportive of ivig for him. He has very few symtoms of LD. Possible bartonella or mycoplasma (but not 100% sure on that - they are similar - and treat with similar antibiotics) so, seems for my son, his major complication is autoimmune, in which case the LLMD supports the ivig (this Dr H.). He has no typical lyme symptoms.

 

He thinks he has lyme based upon his testing - it is unlikely that his PCR and the specific bands for lyme on IgM (the most specific was positive, the next specific was IND)..that it is a false positive. But, according to him, seems the lyme is not his major issue. Its the autoimmune reaction to virus (there is a 100% positive correlation between viral illness, and my sons symptoms). If lyme is the underlying cause, yet to be determine, may never be determined.

[sf_mom]

Is Dr. H going to continue to treat for chronic infection while you pursue IVIG? Will you pursue hdIVIG with Dr. K or try to get it locally? If local, ldIVIG monthly or another hdIVIG?

 

Amazingly enough.... My son started Rifampin this morning and cough is tremendously improved already. Irritability is way up, chapped lips have returned and that is a 'typical herx' response for our son. It takes a good couple of weeks to see improvement if Bartonella is present. So, I am looking forward to having a couple of weeks behind us. Hope you experience similar herx plus improvement.

 

-Wendy

Edited March 14, 2011 by SF Mom

[norcalmom]

There is a new immunologist at Stanford that came up from So. Calif. a couple months ago. He was working with a pandas kid from the board - and she posted that a pandas friendly immuno was heading out way. So, hopefully it will be through him. He is running more blood work on DS, primarily looking for cause of failure to mount strep pneumoniae response (fails 13 out of 14). I won't do the vaccination - that is usually how they test. They vaccinate you and see if you make a response a couple months later.

 

He's looking at some B-cell...something(don't have test results back or the lab order form) . My son also has low subclass 3 and overall IgG. The overall IgG went into normal range (2 points in) after the ivig. but subcalss 3 stayed exactly the same.but I guess 100-200 points under for total IgG is considered OK.

Its the strep pneumonia titers that concerns him more.

 

As for ivig - Dr H doesn't do it (as far as I know) or even know much about it. He says he has some autism paitents (gettin hdIVIG every month) as well as MS and ALS patients getting it (not sure how often). Those patients he said also have lyme, but the way he talked about it, those patients are being advised fby other doctors for their immune disorder as well. and that is who is recommending the ivig (I'm not 100% sure on that - its just how it seemed to me)

 

Since my son is has possible autoimmune def. (we will know more this week with test results back) and it helped last time, he supports doing another. I have no plans after doing one more. It may depend upon what the immunologist advises. If immune def, he says he has patients that get low does for immune def and the pandas is better. The higher does is for different types of autoimmune disorders. Its a discussion I will need to have with him.

 

He has an office in my town, so not having to go anywhere is sooo nice. I might have see what costs are too - Dr in petaluma another possibility.

 

Thanks for the update - sooo glad to hear your children are doing so well! We haven't moved up to the full does of Rifampin yet, just one per day for first few days, and he's plenty irritable too. Also doing Interfase and Boluke (sp?) or supossed to be anyway. Hard to get it all into him, especially being that he is so moody.

 

I should have my PCR test back in a week - I'll let you know.

 

Thanks for your update.

[sf_mom]

You may remember, we went to Stanford with all three kids. We too tested T and B cells and had no dysfunction, we have strep pneumo deficiencies in 13 of 14 for all three and severe deficiencies in IgG 1s and 3s for the twins, etc. etc. They would not classify as PID, perhaps SID 'if they continued to have similar labs over time' and no strep pneumo deficiencies unless we revaccinated. We saw a total of 3 Dr's there and initially they seemed like they all wanted to help but just didn't.

 

Sounds like this new guy might be a little more understanding of PANDAS.

 

Geez... Interfase made my oldest turn sheet white with dark circles under his eyes. He has been taking for only about 2 weeks now... Dr. G saw him last Thursday and confirmed how rough Interfase can be.

 

We will see with the Rifampin 'MOOD' is a big indicator of a herx for us and we got it right out of the gate!!!!!!

 

-Wendy

[kmom]

So--how is the Tindamax doing for you? I think that will be the next thing for our boy. I am not sure about the GSE. Dawn

 

I was scared to rock the boat and add Tindamax even though it made complete sense to add it in. I'm all about adding what meds work and even rocking the boat to get results but b/c Rifampin did so much to make things so much better, I was nervous for Tindamax. But Dr. J's approach is "slow and steady wins the race" w/ Tindamax. He says add it in 2 consecutive days/wk. We chose Sat. and Sun. so we can monitor the kids and if herxing is bad, it shouldn't interfere w/ too much missed school and I am happy to report that since last Dec. (Nov. started Rifampin and bad herxing, more missed school), neither child has missed school due to Lyme...only for important Dr. appts. Dr. J had the kids start Tindamax on a Sat. He said if no herx, continue the meds on Sun. But, we did see some anxiety, OCD and irrational thoughts stir up. Now I am talking nothing major. Nothing like we had lived w/ while only treating PANDAS or during Rifampin herx. But, w/ being so scared of losing our gains, I didn't give them Tindamax that Sun. We waited again till the next weekend. That weekend they did well on Sat. so they also took it Sun. We did the same thing this past weekend. I can say we noticed a little change. Like our little guy seems more impulsive. Again, nothing major. But moments where I am driving to Costo w/ the kids and wondering if my DS is ever going to be quiet! He just seems to interrupt more when he's on the Tindamax. Then I also try to remember that kids aren't perfect although I've always had very well behaved children. Things went haywire once PANDAS/Lyme hit so I try to always remind myself that kids will be kids and it isn't always a herx or Lyme causing impulsive behavior. But, at the same time, now that the kids are in such a better place, I can see Tindamax being the cause of some changes in behavior. From what I have learned, you need to add in a cystbuster in order to really lower the bacterial load so when it's time, just bite the bullet and hope for the best.

 

At least my kids aren't herxing like me from Tindamax where I get very queasy when I start. I take it one week on and one week off. Oddly enough by day 6 or 7 of the Tindamax, I get this red/purple dotted rash on shins, thighs, stomach and parts of back and arms. Then it goes away in a few days.

[norcalmom]

BINGO -SF Mom - Interfase - gave my son a wicked stomach ache last night. That was the first day I gave it to him. I googled it late - its a digestive enzyme used to break down microfilms...I don't know if my son will be able to take it. He had to lay down his stomach hurt. I gave it to him with dinner, and about an hour-2 hours after is when he was doubled over...BUT it went away pretty quickly. He said he felt OK at bed time. The bummer is - because he had stomach upset, I didn't give him his second does of Azith..oh well.

 

I'm glad I didn't give it on same day as started Rifampin - sever stomache pain is a get to the hospital warning on the label.

 

I think I'm going to take a couple to see what happens to my stomach. I'm going to skip today.

 

My son is in a horrible mood. This is so awful...are the antibiotics working...or not working... he has more symtoms is a good thing...or indicates he needs a different antibiotic...arrrggghh.

 

Yes - the new immunologist has given ivig to pandas kids before. He is from UCLA. We'll see what he says about ivig for my son. I actually forwarded him Dr Cunningham's latest slides (the ones that were removed...before it was removed) and he sent me some comments on her data and thanked me for sharing it. We'll see it Stanford squashes the pandas out of him or not. I'll let you know!

 

SF- I actually did know that about your kids. I recently went back and read your old posts so I could put the story together more (I mix so many threads up). I wanted to see how bad of a relapse you had before lyme treatment started. It looks like your kids were doing fairly well (al realative) before the lyme treatment started -so perhaps - the ivig helped correct some of the autoimmune stuff your kids were dealing with prior to the lyme treatment?

Did they have "traditional" lyme symptoms, that you did not know about (but discovered from lyme education?) that indicated lyme (in addition to pandas)?

 

I mentioned on a pandas thread this morning...Cunningham's had a slide that said "Succeptible Host" and it had 4 inputs - Genetic, Neurologic (family member with tics), Immunologic, and Types of Exposures.

 

Strep - was still the trigger.

 

To me (although their was not audio with the slide so I could be very wrong!) this means that you are at risk if you have any of those 4 things (plus strep). And if you have 2 - probably higher risk. I would think Types of Exposures would be lyme, or other (chronic) infections.

And, logically, you can't get better until you treat both. Perhaps you can get better with just treating the lyme, if the lyme is causing the autoimmune dysfunction. Problem is, none is mutually exclusive. You could have all 4.

[sf_mom]

On my way out the door to Yoga and will respond in more detail later to your post. Typical of me, I have more thoughts.

 

I just wanted to say... stop the Interfase for now if you think it is too much. You can definitely attack biofilm later on down the road. It can be rough on empty stomach and that is how you are suppose to take it. We do it right before breakfast.

 

We have had the mood issue crop up so much as a herx response. I think this time it will be short lived... 'mood' herx but only time will tell. We've gotten instant relief from cough.... its about 90% better in less than 48 hours so we are hitting something. The current herx due to antibiotic rotation: Cough resolves almost completely but mood liability is off the charts. So, typically what happens is we keep the positive gain 'no cough'. Mood will take sometime to resolve and once it does we have another baseline adjustment.

 

-Wendy

Edited March 15, 2011 by SF Mom

[norcalmom]

WOW - that you could see his cough die down in just a couple days! congrats!

[sf_mom]

Twice now we've had rapid resolution (within 48 hours) to a specific symptoms when starting a new antibiotic along with new herxing symptoms. When we switched to Cedax in early January we saw a huge improvement in mood liability almost over night. Mood liability was his main issue once his TICS resolved. With Cedax the mood liability disappeared and now only crops back up as a herx or occasionally when over tired/hungry which is normal. Dr. H explained to me that Cedax cross the BB and will kill the bacteria in all forms. Azith only cross BB in small amounts and only kills Lyme in its active form. Cedax also caused the most recent cough to crop up as a herx and stuck with us for 9 weeks. Cough is attributed to chronic Bartonella and is either from cytokines or toxins. Rotation was made to Cedax/Rifampin to hit Bartonella harder and cough stops. Today I have only seen him look like he 'wanted' to cough but didn't. So, it is my understand Cedax and Rifampin both are great at crossing BB and combined even more powerful.

 

OK back to your prior post.

 

-Wendy

Edited March 15, 2011 by SF Mom