Feedback, please!

[beeskneesmommy]

Hi all:

 

DS almost 7 had an IVig last Sept. he had a bumpy road for several months, still with flares, but less frequent and less severe after a while. I saw little improvements week after week thru the winter. By about mid January, he was doing very well and his symptoms were such that only I could see them and they had become infrequent. We were pretty happy for a consistent period of time. Life felt smoother than it had in a long time. However, because he was not 100% and still had mild flares occasionally, the specialists we see recommended another IVig. We did this with optimism in mid May. However, he has been consistently worse than before this 2nd IVig and his flares are more frequent and more severe than when he leveled out before.

 

Two things changed: 1. I was told to put him back in school afterward, no need for isolation. I isolated him anyway for the rest of the IVig week (infusion was a M,T) and for the whole week following, but put him back into school after that. I then had to take him in/out of school several times over the next couple of weeks d/t possible Strep exposure reported to me by school staff. 2. One of his docs took him off of the Augmentin and put him on 30 days Clindomycin and 14 days Rifampin. he also remained on daily Azith throughout. During the combo of all 3, he did really well. When the Rifampin dropped off and he was finishing up the Clindo along w/the Azith, he went down hill very fast. Bad symptoms from the old days started to show up like wildfire. On the 29th day of this, I dumped the Clindo and put Augmentin back on board, still keeping the Azith. Within 12 hours I started to see a difference and within days he was doing quite well. We continue on the old stand by, Azith and Augmentin combo. However, he has been flaring much of the time with pre 1st IVig symptoms. Among other symptoms, hyperactivity and chorea that had previously fallen off is back.

 

We are now at week 13 post IVig and I still maintain that he has not gotten back to the place that he was before this 2nd Ivig. I just drew for Igenex Lyme/Bart, but the Rifampin and the Augmentin making such a diff. seems to suggest Strep. The kid has been on daily abx since Sept. 2010! He has been on the Azith/Augmentin combo daily (except for the month long Clindo disaster) since July 2011! I will be talking to one of his specialists on the 27th (next week). I need to ask for another abx, I think. I would like Rifampin, but I cannot get that long term. What about Biaxin? This would be in adition to the Azith/Augmentin that he is currently on.

 

Any other suggestions? I want my kid the way he was before this 2nd IVig! Could the product have been tainted? I insist upon Gamunex and it was a good full dose of 2g/1k. just like before. Admittedly, his pattern of recovery after the 1st IVig was that it took a long time for great success to kick in, but there was forward progress throughout, after the first 4-5 weeks that accumulated to a pretty good place.

 

Oh, also, he has been back on Diflucan for about 6-7 weeks just to get after any yeast issues that might be in there d/t long term abx use. He has historically always done great while on the Diflucan/Azith/Augmentin combo.

 

WTH??!! Sorry this is so long but I have been at this with slow, difficult forward progress for 4.5 years...until the past 13 weeks! I got nothing but suspicions and speculations.

[LNN]

Can you do a stool analysis with metametrix?

My DS's bloodwork for Candida was negative but Metametrix showed he had yeast issues other than candida strain and showed what the particular strains were susceptible/resistant to. It also looks for parasites and e coli etc. I think it was @$100 for the test.

 

Like you, I'd assume the diflucan should be doing the trick, but if you run out of ideas, the metametrix test was helpful. I also got good info from a Spectracell blood test for my other child and it showed some vitamin/mineral deficiencies that ended up being key to fixing some of her issues.

 

FWIW, my son was on Rifampin for about a year for lyme - it really helped. Why can't you get that long term?

[T_Anna]

From drugs.com

Using azithromycin together with clarithromycin (Biaxin) can increase the risk of an irregular heart rhythm that may be serious.

 

Have you ever tried Minocycline?

 

T.Anna

[beeskneesmommy]

Can you do a stool analysis with metametrix?

My DS's bloodwork for Candida was negative but Metametrix showed he had yeast issues other than candida strain and showed what the particular strains were susceptible/resistant to. It also looks for parasites and e coli etc. I think it was @$100 for the test.

 

Like you, I'd assume the diflucan should be doing the trick, but if you run out of ideas, the metametrix test was helpful. I also got good info from a Spectracell blood test for my other child and it showed some vitamin/mineral deficiencies that ended up being key to fixing some of her issues.

 

FWIW, my son was on Rifampin for about a year for lyme - it really helped. Why can't you get that long term?

he did test + on a lower level (10) for Candida before the IVig. The Diflucan was wonderful, but when the bottle ran out pre 2nd IVig, I stopped it for a long time because I knew the Rifampin was coming after the IVig (Doc's idea was to do the Clindo/Rifampin to "blow out any residual Strep"). Can't do Diflucan w/Rifampin because Diflucan is rendered ineffective, apparently. So it had been a long time that he was off the Duflucan, many weeks, but I did not think it would spiral OOC to any huge extent since the blood work showed that the Candida wasn't terribly high. Re: Rifampin long term, Dr. B said it shouldn't be done - He said it should be used always with another abx in conjunction and "in and out" pretty quickly. I will ask him again when we talk. Thx!

[beeskneesmommy]

From drugs.com

Using azithromycin together with clarithromycin (Biaxin) can increase the risk of an irregular heart rhythm that may be serious.

 

Have you ever tried Minocycline?

 

T.Anna

Never tried Mino. Can it be used w/Augmentin and Azith? Actually, the other specialist who put him on the Clindo/Rifampin run specifically instructed me to drop the Augmentin but to keep ON the Azith. I was not aware of those side effects. Thx.

[LNN]

You're right - can't do rifampin alone - too easy for bugs to become resistant to it. But we did it in combo with zith for a yr. If it's something you feel strongly about, send me a PM and I'll give you my LLMD's #. I know he and Dr B have several patients in common and I think they may have talked on the phone a few times.

 

I'm assuming you're not in a place where you'd consider stopping abx and just doing diflucan. But there are other things that treat yeat that you might try - garlic (alicin), butyrate, or probiotics high in bifido strains - LLMD wants me to start using this http://www.amazon.com/Xymogen-ProbioMax-DF-Billion-Probiotic/dp/B004U2BZY4 You might also want to google molybdenum. Moly helps the body break down aldehyde - which is the stuff yeast releases to cause that drunken sailor behavior and brain fog. It doesn't kill the yeast but helps you feel sober again. We use moly drops so we can control doses up or down as needed.

 

DS has been off abx since April but yeast has been a tough beast to kill after 5 yrs of abx making the bioterrain a wasteland. It reminds me of my losing battle with the crabgrass in my lawn. It's really hard to get things lush again. It can look a lot like Pandas in terms of its OCD and ADHD effects.

 

Fingers crossed your appt next week gives you some new things to try!

[dcmom]

Beesknees-

 

Sorry things have been rough.

 

My only suggestion is to figure out what you are treating, before throwing all the meds at it. I know this is the million dollar question, but I think it is important. If you are treating autoimmunity (perhaps the ivig stirred up his immune system this time?), all the antibiotics are not really going to help. You would need steroids or the like.

 

If you feel you have some chronic infection- that may be the reason for the flare with ivig, and you should work to figure out the infection to target it more specifically with meds.

 

I don't mean to sound cold at all- just that for us, we have found that what our kids have is definitely autoimmune, and all the antibiotics in the world don't touch it. Yes I know some have mild immune modulating features- but there are MUCH better options if that is what needs to be done. We are able, thankfully, to see results with steroids, solumedral, pex, etc. And yes, apparently minocyclene is the best antibiotic for immune modulation and crossing bbb- so might be worth a shot.

 

There are other families on here who have found chronic infection to be the culprit- and therefore needed to go a different route.

 

My personal opinion is you need to go with your gut on this, what do symptoms, onset, and test results all point to. What treatments have worked. I know you have been at this a while, and you are really smart, you are going to get your little boy well- hang in there!

[LNN]

A balanced reminder, DCMom!

[philamom]

 

From drugs.com

Using azithromycin together with clarithromycin (Biaxin) can increase the risk of an irregular heart rhythm that may be serious.

 

Have you ever tried Minocycline?

 

T.Anna

Never tried Mino. Can it be used w/Augmentin and Azith? Actually, the other specialist who put him on the Clindo/Rifampin run specifically instructed me to drop the Augmentin but to keep ON the Azith. I was not aware of those side effects. Thx.

Mino can be used with Azith. My daughter was on that combo (also amox) for lyme, bart & strep.