All IVIG gains undone by Rifampin herx?

[MPS1978]

Hi,

 

6.5 year-old DS was part of NIH clinical study and received 2HD IVIGs this past year, which got him back to 95% right before school started. Since school began, and the inevitable exposure to bacteria/viruses at school, he declined to a manageable range of 70% to 85% depending on the day/week. Dr. L is our outside PANDAS doc, and just saw her several weeks ago to resume treatment under her since we are now outside the 6-month NIH study mark (didn't want to do something on our own that biased the IVIG study). Since DS was not doing as well as we had him right before school started (but still manageable) at the time of the Dr. L appointment, Dr. L placed him no 7-day course of Rifampin to clear out any insidious strep that the Amox did not reach (up to then DS was on 1000mg of Amox a day).

 

Anyway, during and now 4-days post Rifampin DS is sadly back to pre-NIH IVIG state of health. OCD/rate/emotional volatility is through the roof and back to where we were when we first came down with PANDAS.

 

I've read here that Rifampin produces serious herxing for Lyme/other co-infections and now am thinking we must have stirred up something other than strep. Dr. L does not think it's a herx reaction and possibly a recurrence of strep (but DS tested negative on the rapid test), but my gut tells me something else is going on here. Part of me is hopeful that this is simply a herx and is just a matter of time for DS to recover after the dead/dying toxins are cleared from his system; other part is regretting the use of Rifampin since DS was manageable prior to it and fearful that the Rifampin herx has undone all the IVIG gains we realized by kickstarting his dysfunctioning immune system into overdrive that needs steroids or another round of IVIG to halt.

 

We're in the initial phase of seeing McCabe to treat possible lyme/co-infections and candida and testing is underway.

 

Any ideas/experiences to share? Maybe a steriod-burst if things don't get better in the next few days? Very much appreciated.

[qannie47]

Has he had his Tonsils removed?

[MPS1978]

Not yet--T&A is scheduled at the end of November. Are your thoughts that the Rifampin is doing what it's supposed to do and getting at strep lodged in the tonsils and hence the die-off reaction? Possible. Anyway, PANDAS/PANS is such a puzzle to address.

[rowingmom]

Just my thoughts:

 

If your child has an underlying infection that is actively producing antibodies, IVIG will dilute them, the result being a decrease in symptoms. The infection will continue producing antibodies and, as the effects of the IVIG wear off, will become more concentrated. So you may have been seeing a bit of both a decrease in IVIG concentration in the blood, and an increase of infection-based antibodies, producing symptoms.

 

Die-off toxins often produce symptoms that are worse than those observed before treatment, but as these endotoxins are processed and removed from the body (assuming methylation is working properly), symptoms should wane.

 

http://en.wikipedia.org/wiki/Endotoxin

 

Humans are able to produce antibodies against endotoxins after exposure, but these are, in general, directed at the polysaccharide chain and can only protect against the immunoactivation from serotype-specific bacteria and/or their specific endotoxin. Injection of a small amount of endotoxin in human volunteers has been shown to produce fever, a decrease in blood pressure, and activation of inflammation and coagulation. Endotoxins are in large part responsible for the dramatic clinical manifestations of infections with pathogenic Gram-negative bacteria, such as Neisseria meningitidis, the pathogens that causes meningococcal disease, including meningococcemia, Waterhouse-Friderichsen syndrome, and meningitis.

 

So I guess that if you are dealing with gram negative bacteria (ie. lyme/bartonella), you could be increasing the number of antibodies to the infection because of the endotoxins released with antibiotic use. This would further decrease the concentration of IVIG remaining in his system. Strep is a gram positive bacteria.

 

A head's up - rifampin should not be used alone. There is an increased risk of resistance when it is used as monotherapy.

Edited October 23, 2013 by rowingmom

[Hopeny]

My DD9 had herxing when she started Rifampin/Zith combo, rages mood etc, for suspected Bartonella, she tested negative but had signs so we decided to try Rifampin. We knew she had Lyme and other co infections. Rifampin was the only thing that lowered her ASO to a completely normal level. She has been on it for a year and we are weaning off. She is, and I hate to jinx myself, almost entirely well. The herxing was a bit prolonged but may have been exacerbated by too much MTHF. We plowed through it because it was manageable and I am glad we did.

The reaction your DS is having would make me question Lyme/Bartonella. With the greatest respect from what I understand Dr L is not in any way a Lyme/co infection subject matter expert. Consider the steroid burst carefully because if you do have Lyme, it can exacerbate it. I am not a doctor and this is not medical advice but my view is Bart must be treated, and it takes a long time. Some classic Bart symptoms include rages, mood swings, foot pain especially in the morning and stretch mark looking marks (My thin DD had some appear on her arm a few days after starting Rifampin, that cinched it for me that she had it)

Sorry you are going through this, it is so frustrating, but maybe you have stumbled on another piece of the puzzle

[MPS1978]

Thanks Hopeny and rowingmom--I agree with your feeling that we're dealing with lyme/Bart. Wife did mention that DS has complained a few times about joint pain. No stretch marks. We get our lyme/co-infection results back in the next few weeks and will provide an update on the results. Thanks again.

[rowingmom]

Our daughter was highly positive for bartonella and has never had a stretch mark.

 

If you think bartonella is involved, please contact a LLMD. The PANDAS specialists are just that - specializing in strep-related autoimmune responses. The LLMDs are aware of the autoimmune-type reactions caused by other infectious organisms.

Edited October 24, 2013 by rowingmom

[LNN]

I'm going to post something others may not agree with, but here goes. The half life of IVIG is 6 weeks. By 3 months post-IVIG, most of the benefit is gone. All the research papers I've read leave me with the impression it's meant to treat/halt the Pandas flare that's occurring at the time IVIG is given. The researchers don't suggest that it's a cure or that one or 4 or xx IVIGs will put an end to the child's tendency to have an autoimmune reaction during the next bacterial infection.

 

Also, even though some LLMDs are starting to consider IVIG beneficial as a way to strengthen the immune system to fight lyme, the presence of a chronic infection is, IMO, going to keep the autoimmune process going, whether you get IVIG or not. So I see IVIG as a tool, but not as a cure. So when you ask if you've "undone" the benefits of IVIG, in my view, the benefits will be "undone" simply as a matter of time, not because you did or didn't give rifampin or any other medication. IVIG, in my experience, doesn't prevent future flares. So IVIG improvements can be "undone" by the next illness, by treating a chronic infection, or simply by letting enough time go by, even if you stay healthy. I know not everyone shares this view, but that's how I see it. So I'm not sure any guilt you're feeling is warranted.

 

I do agree that Rifampin should not be used as a monotherapy and also that you're doing a good thing by seeing McCabe. I would be hesitant to use prednisone for a long period of time, but my understanding is that when taken for a short period of time (say 10 days or less) its primary function has been to reduce inflammation and it hasn't yet suppressed the immune system. That's how you can take it for 10 days for poison ivy and just stop cold turkey at the end. The feedback loop that tells your adrenals to stop making its own steroids doesn't kick in until after that initial period. Take prednisone for longer and then yes, it has started to reduce your body's own production and you need to taper off, not stop cold turkey, so that your body can re-start its own production. So in that initial time, I don't think you'd be significantly reducing the immune system's ability to fight infection. I once asked our LLMD why my DS responded so well to prednisone if it was really reducing his fighting abilty. He said sometimes the inflammation is causing so much pain that the relief you feel from prednisone outweighs any negatives, at least in the short term. So I think you need to decide what's bearable while you wait for your results. It's not like 10 days is going to alter the course of the disease significantly. On the other hand, it there is a chronic infection - whether lyme & co or infected tonsils, the benefits of prednisone would be short-lived because the infection would just re-start the inflammation/autoimmune process once the prednisone was stopped.

 

Anyway, I'm just repeating what others have already said. I just wanted to share my thoughts on why you shouldn't beat yourself up about "undoing" the positives of IVIG. The positives you saw indicate you have an autoimmune situation and that you are dealing with Pans. But I think the positives would fade regardless of what you have or haven't done in the past 6 months. Until you get the thorn out of the lion's paw, he's still going to keep roaring.

[rowingmom]

LLM - you have such a way with the written word .

[MPS1978]

LLM, thank you for the insightful response. Your thoughts certainly make sense to me.