Lupus and PANDAS

[dasu]

We finally took our two P kids to a rheumatologist who ran bloodwork. Based on symptoms the doctor expressed a mild suspicion for lupus. Both came up ANA positive but my daughter was also positive for RNP. She has a lot of fatigue, body pain, leg weakness/pain and joint pain in addition to a the P symptoms. That said we are stuck in a flare for the past year; she is doing somewhat better but the fatigue seemed to come on with the strep exposure and subsequent P symptoms.

 

Has anyone else here had a lupus diagnosis for their P kids? How does treatment proceed?

[mama2alex]

All of their symptoms sound very much like Lyme. I know you had them both tested through Igenex, but I'm wondering if they had any IND or + bands on their results - even if the overall finding was negative. I ask because my son and I repeatedly tested negative on Igenex, though he had a couple of Lyme-specific IND bands here and there. I had no +'s or IND's except 41. We finally both tested positive on the culture test in 2013. The western blots - even Igenex - do not test for all the possible strains of Borrelia and are not 100% accurate. It may be worth revisiting Lyme with an LLMD, but obviously you know your situation best.

[LNN]

What is RNP?

 

Yes, my DD had a positive ANA, with a nucleolar pattern, which can suggest an attack on muscles, particularly upper arms and legs. This matched her intermittent loss of her ability to walk - she couldn't support her own weight. She was put on antibiotics - clindamycin intially and then Alchornea - an herbal antibiotic - for several months to treat a chronic sinus infection (staph and fungal) and when we re-tested, she had re-gained her muscle strength and her ANA was normal again. Alchornea is now my go-to treatment - it worked far better than clindamycin and didn't mess up her gut.

 

I know several Pandas - mostly but not exclusively girls - who've had positive ANAs that returned to normal once their flares ended. One continued to have positive ANA but also had Lyme.

[boysrlove24]

My son has just recently been diagnosed with PANS and Lyme. I'm very new to this forum and llm, mama2alex and sfmom have already been so helpful to me. This is a great place to get support from fellow moms with lots of expertise (more so than the doctors in some cases!!).

 

My only feedback is that my son also tested positive for ANA - but he tested negative for RNP according to his labs (I just looked it up). When I first got this test result back I thought oh my gosh he has lupus? AND Pandas?! But three months later our integrative medicine doc was smart enough to encourage us to test for Lyme. We learned he is positive for Lyme and Babesia at that time.

 

I'm hopeful that the ANA will go back to normal once we get through the Lyme and Babesia treatment.

 

Have you checked for Lyme yet?

[dasu]

This is RNP http://emedicine.medscape.com/article/2086705-overview. I think it makes sense that it may not be Lupus given other symptoms. We went to a university hospital which is great but it is so difficult to get a hold of a doctor afterwards.

 

@mama2alex We (well, the doctor) did not see any indication of Lyme. We only have so much money to throw around at these issues, so stopped there. But I do not think its Lyme because I have two sisters each with a PANDAS kid. There has to be some genetic factor despite no prior family history and a common environmental change. Now what that is I do not know...

 

@llm I have never heard of alchornea. What did you try to treat with that and what dosage did you administer? I see so little informaiton on this online.

@boysrlove24 we tested for Lymes and coinfections through Igenex. I try to put that stuff in my signature so I do not have to restate it for questions and also so others can immediately see where you are coming from for replies.

Edited July 20, 2016 by dasu

[LNN]

My daughter got very ill from mold exposure in her school building. The congestion led to a chronic sinus infection that Shoemaker (www.survivingmold.com) calls MARCONS (multiple antibiotic-resistant coagulase-negative staphoccocus). 8 months of oral and nebulized antibiotics and a nebulized anti-fungal kept it in check (sometimes) but never eradicated it. Since DD is allergic to many abx, we turned to herbal antibiotics and 3 months of alchornea (10 drops 3x/day) did the trick.

 

Here's info on it http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/

http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/

 

It has a very earthy taste, so we put it into an empty gel cap and she swallowed it w/in the first minute so it didn't dissolve. No taste that way. You'll see that it's also used for sickle cell anemia - it helps the red blood cells regain their shape somehow, which helps them carry more oxygen. While on it, my daughter felt more energy - maybe from the infection being treated but it also seemed to somehow treat the fatigue in a different way. Hard to explain.

 

I am not pushing the Lyme - but do want to share that I dismissed the idea for my son for 2 years - he had a negative Quest Lyme test (which I now know isn't very reliable) and a very positive correlation to strep infections. But he in fact had Lyme plus strep induced Pandas. My daughter also has Pandas but not Lyme - so yes, I do believe there's a genetic issue that makes their BBB's "breachable" but Pandas and Lyme aren't mutually exclusive and one kid in the family can have Lyme + Pandas and the other can have "just" Pandas. I get the money issue. But one thing you could try is to treat it "as if" it were a Lyme infection by using combo abx - one extra-cellular like augmentin, omnicef... and one intra-cellular like azithromycin. This was the core of my Lyme son's regimen for 2 yrs. If you saw improvement using more than one abx at a time, who cares what you label it - it might be a treatment that could help. If you don't have a doctor on board with using more than one abx at a time, you could do a prescription abx plus herbal abx, like alchornea, sida acuta, cryptolepis (all discussed in Stephen Buhner's lyme books).

 

As I said - not pushing. I hated when people kept asking me about Lyme. Only suggesting that you can have both strep and Lyme infections and that combo abx might be worth trying, even without additional testing.

[dasu]

Excellent, thank you.

 

I remember you suggested that we move last year. So we did, but to an old house. I cannot find any evidence of mold and its in one of the driest counties in the east coast - if that helps, lol. We hit a bump with our well water - it came back positive for e-coli and coliform bacteria. Now we did not drink the water but the kids used it for their teeth etc and may have even drank some. We have only been here a month but see some improvement, but it is also summer, usually one of the better times of year.

 

I very much appreciate people arguing for about anything, as long as it is polite and factual. We are desperate, and eagerly await about any tidbit of new research or information regarding L and P. Anyways, both of my kids are on prophylactic augmentin. So implementing your suggestion would not be hard to do. We have prescriptions for all kinds of things laying around.

 

My sister's son has had Lyme a few times in the last decade. He had grown into a depressed man (23) unable to go to college (though he is quite bright) between the depression, ODD (once came into a class arguing against a book he never read) and cognitive issues. He sees some very pricey NYC doctors who now state that the inflammation is due to either.....P or L! He did herbs for some time, and is now doing somewhat better, able to engage with friends and has taken enough interest to go and get a job. And lately he just got sick but was able to recover without pysch symptoms following. This probably illustrates your point.

[rowingmom]

DD14 was ANA positive (speckled type) indicating connective tissue involvement. No other indicators of lupus though.

 

She tested positively for bartonella and lyme, and was later clinically diagnosed with babesia although testing negatively for it (all through Igenex).

 

As her infections were treated, her ANA returned to normal. It wasn't a reach to assume that lyme was likely responsible for the observed connective tissue destruction.

 

She remains in remission.

Edited July 21, 2016 by rowingmom

[bws1565]

Lyme is often misdiagnosed as Lupus. It is really worth looking into.

[puppydog]

Here's an artice posted by dr. t on fb:

Staph Nasal Carriage: A Link With Lupus?

http://www.medpagetoday.com/Rheumatology/Lupus/59487?xid=nl_mpt_DHE_2016-08-04&eun=g862467d0r&pos=22

[dasu]

@llm We are now using both augmentin and azithromycin as you recommended. The first week went super well, but another family we are friends with is sick, perhaps strep, and their ODD and ADHD has kicked up. Beyond that what should we pay attention to?

 

@puppydog. Interesting because my daughters gut had a staph aureus infection a few months before she had her first major PANDAS flare.

 

Thanks all.