Nightmare PANDAS/tics newbie - need help/advice

[nitshel]

Update - DS is now in 3rd week of Augmentin + Azith combo. We saw very gradual improvement and then bam - last three days have been terrible. Vocals came back and quickly became coprolalia. We are beside ourselves with worry. What could be going on? Is it normal to get herxing weeks into Abx (if this is even herxing). Any ideas? With school starting soon we need to have a plan - poor guy has laready missed most of the summer cooped up because of this condition. He is already at 2 mg Risperdal - we dont want to go any higher - but we fear that the Abx could set a new "normal" and we will have to up the dose. And the worst part is we STILL dont know what the underlying problem is.....

 

Any ideas from the experienced folks on this forum?

[LNN]

Not sure which Dr you're currently working with, but you may want to discuss either a different abx combo or some yeast/stool testing. Augmentin+zith combo was never very effective for my DS (Pandas/lyme - big ticcer).

 

I wouldn't expect a herx 3 weeks after introducing the combo. Usually, I saw herxing either right away or within 2 weeks, withs ramping up over the course of a few days. To see a sudden and dramatic onset suggests a few possibilities - 1. it's yeast 2. it's the lyme life cycle and you're seeing an uptick in symptoms as some lyme spirochettes leave a biofilm and replicate, setting off to form new colonies. The lyme life cycle is 3-4 weeks. So mark the sudden change on a chart or calendar and watch for a pattern. 3. it's some other infection or change in medication - did you complete some sort of viral treatment recently? Have you added any supplements in the past few weeks? 4. Have you considered heavy metals? 5. Are there any seasonal allergies at play - ragweed? mold spores from a basement that's been damp with humidity all summer?

 

My son's tics showed up when he was struggling to handle toxins from dying bacteria. I know they're hard to live with, especially vocal tics and misunderstood symptoms of corporalia. But try to remember that these are symptoms, not the root cause. When you get to the root cause, the symptoms will subside. The thing that freaked me out most about tics was the public nature of them and the fear that they'd never go away. They bother me less now when they ocassionally return because I know that it's just a sign that we need to eradicate something and that once we do, the tics will go away.

 

If you're not yet working with an LLMD, I strongly urge you to get to one. Even if the Advanced Labs culture comes back negative, LLMDs are the best versed in all these other related issues I've listed.

[T_Anna]

<<1. it's yeast>>

 

We have found this to be a huge issue with DS. Can you get a trial of Diflucan to try it out?

 

DS went from being very sedentary and having a LOT of choreoform movements to almost none (narrowed it down to the Diflucan as this happened on Augmentin and Azith).

 

Also, we had a bad experience with SSRIs and NAC, where DS was hitting his head against the wall in frustration when fighting compulsions.

 

We only tried Rispadral a few times when he was suffering from insomnia, it didn't help and we stopped, so I don't have much personal experience with it.

 

T.Anna

DS15

[nitshel]

Thanks everyone. We did have DS on Diflucan but that was a while ago - perhaps we need to get another dose in...

 

Other than that nothing has changed, we didnt add any new supplements, foods or medication and DS does not have any allergies in this season.

 

The only heavy metal that showed up in the last screen was organic Arsenic - Dr T told us this was probably because of seafood (which our son loves). We had cut back on that just in case.

 

@LLM - I completely agree that we need to find the root cause. There is no history of TS or neurological issues in either side of the family and DS has never had a head injury or childhood trauma - so we keep looking for the underlying infections agent. I just wish that some test - any test (and we have done dozens) came back with a clear and obvious indication of what is going on....

[LNN]

Nitshel - I hope it didn't sound like I was minimizing the hardships of tics. Just trying to reassure you that they can go away. It took a long time to uncover what was going on with my son. There were obvious things (strep), less obvious things (lyme) and things I'd never heard of (pyroluria and methylation). So hang in there.

 

if it's any help, we could never find a trigger for my daughter either. Her Cunningham panel was more positive than my son's, yet she's never had strep that we know of. Her lyme labs were iffy. Antibiotics helped at first but they didn't completely do the trick. For her, a custom methylation protocol is what's brought her from being bi-polarish to really, really good. Everyone's solution is a little different. Try not to get discouraged. Fear is a great motivator - it's how I motivated myself to learn lots of geeky stuff at 2am! Your dedication to your son will get you there. It could be that you just haven't looked under the right rock yet.

[nitshel]

Thanks LLM - on a separate thread I've mentioned that we decreased - and then today ceased Abx to get DS stable again - we might restart Abx later but right now he is not in a good place. Not sure why Abx would have this pattern - very slow improvement in first week or two followed by a terrible spike in week three. I wish we could tough it out but it does not seem to be subsiding and we dont want to increase Risperdal....so the only choice is to back off on Abx for now...

 

We still hope to find the trigger...or some combination of supplements/medicines that work but we are not there yet after almost a year.....

 

Many thanks for your good thoughts and advice - we need all that we can get these days..

[nitshel]

Over the past few days as these tics have spiked (despite ceasing the Abx) we've found some behavior changes

1. Handwriting getting worse

2. A bed-wetting episode when tics were bad

3. Separation anxiety / anxiousness and easily upset

 

Are these symptoms consistent with PANS as I think they are? If so, we're confused - wouldn't we have wiped out much of the bacteria / lyme and viruses with the multiple weeks of Abx and Valtrex?

 

We figure it has got be the Lyme (3 wk cycle) or some kind of methylation problem....or both...or maybe its just a side effect of Abx use (e.g yeast). This thing is such a riddle - I really wish we get some answers soon....

 

Blessings to all...

[Universe123]

Nitshel, I have an 8 years PANDAS son, and to cut a long story short, since I am against antibiotics (we put him on 3 weeks with improvements but I did not want to continue sistematically) I tried O.L.E., olive leaf extract, 500mg 3 x day as I read on this forum from a member called Stephanie. My son has still vocal tics but his spitting and worse all his aggression and personality change has gone. You can try to find info on the web and on this forum. OLE saved our life and I am for ever grateful to have come across this information while we were experiencing ! Wishing you and your family all the very best.

[nitshel]

Thanks Universe123. What we did was to put DS on Diflucan and Motrin (2 tabs 2x day) and literally in 48 hours we saw an 80% decrease in tics. The tics are by no means gone - but they are back at baseline - still bad but in a place we can deal with. We dont know if it was the Ibuprofen or the Diflucan (likely both) but we are talking to the doc in a couple days and will let you know what he says.

 

We've been told that Ibuprofen is like a "poor man's Cunningham test" os if the improvement is partly / wholly driven by it then we can be pretty sure its PANS. What I'm less sure about is what we should do next. Ibuprofen is not recommended long term - so is the answer to go back on Abx (but also take Diflucan and probiotics) -or some other more sustainable strategy....

[nitshel]

Update- our DS' Advanced Labs results came in - he is positive for Lyme. On one hand this is good news because we have found at least one major part of the problem. On the other hand, we have new questions such as

 

1. Why would the Motrin have helped DS so much? Does Lyme cause inflammation?

2. Why would the prednisone we gave him a few months ago have such a horrible reaction - made his tics go to a new worse level? What is the steroid-lyme connection?

 

We have begun the methylation protocol but bedwetting is still there as are the tics.... also I feel that he cannot really tolerate too much aBX in the gut....are there any herbal remedies for Lyme? Wanted to get some ideas from the group as we search out an LLMD....

[rowingmom]

Lyme and the coinfections do cause significant inflammation. Hopefully when you find a LLMD, they will test for coinfections as well - bartonella, babesia, ehrlichia, mycoplasma. Our problem was bartonella and our LLMD was sure that it was the infection responsible for DD's PANS reactions. DD doesn't have much in the way of lyme symptoms.

 

Throughout DD's treatment we used Japanese knotweed for inflammation, but probably not enough of it. If you want to learn about lyme and co, and are hoping to add in some natural treatments, Stephen Buhner is very informative.

 

Buhner's site is here:

http://buhnerhealinglyme.com/

 

There is some explaination of his herbs, their use, recommended dosages and sellers on his site, but purchase and read his books as well.

 

Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

 

His book on treatment of resistant bacterial infections with herbs is good too.

 

Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria

 

Buhner is by far the best herbalist for treating lyme at the moment. He makes no money selling product (unlike some others who's protocols only involve the supplements they sell - Cowden, ByronWhite, Zhang, Jernigan), other than his books and he lists sites to buy the powdered herbs and tinctures in the back of his new coinfection book.

 

[cobygurl]

Hi Nitshel,

 

I was just reading this post and saw you asked about supplements we were using for detox back at the beginning of the summer. So sorry I'm only answering now it I just saw your question!

 

Right now we take vit c, zinc, probiotic (theralac we just added), fish oil we just added, Epsom salt baths, lots of coconut oil as an antiviral and olive leaf extract a few times a week. We also did a third round of Acyclovir for the coxsackie, and my child got 85-90% better. It's important to note too that prior to the acyclovir our son could hardly tolerate any of the supplements above. He was also on a severely restricted diet as it seemed everything made him worse. Acyclovir for us was a turning point...

 

Also, one of the main things we did at the time after the last round of acyclovir and in our opinion, eliminated a tic he had had for almost 10 months, is that on the advice of our dan doctor we started rotating homeopathic remedies (pleo remedies) to help modulate his immune system and it has helped to get us up to 95% better or more.

 

He just had a fever though so we are dealing with some minor tics from that but it is minimal. He also exhibited no OCD this time when he fell ill which was amazing for us as his anger and OCD get ramped up when he does get sick.

 

If you want more information on the pleo remedies, PM me and I can tell you more about what DS is taking, I'm happy to share.

 

I should mention we are also going to be adding in a bovine colostrum to help with the immune balancing as well.

 

As far as Lyme we are have not had to deal with it but I was told that the pleo remedies are very helpful too in combatting lyme.

Edited September 19, 2013 by cobygurl

[croatianmum]

I just saw Your post.

my son is 13 now, but when he was 8 he had coprolalia also, together with a lot of different tics; and also a loud vocal tic. We did at the time . also risperidone, orap, clonidine for a couple of Years

Years later, he got diagnosed for pandas and we gave him prednisone in one of his f.lares and it only made things worse!!It took him about 14 days to get to his previous condition. I haven't read all this answers here, but I will do it later (my baby son just woke up); I'm courius about the answers because we have very, very simmilar symptoms.

Best of luck to You

[nitshel]

Thanks all! Appreciate the advice

Rowingmom- did you get Igenex testing done- not just for Lyme ( which we did ) but also for co-infections?

Also, do herbs really work?- am a bit skeptical but open minded to their use...have others has luck using herbal cures for Lyme ?

[rowingmom]

Our LLMD ordered the whole lyme and coinfections panel through Igenex. Whenever we retest bartonella titers we use Igenex. The rest of our testing, including CD57 is done through LabCorp.

 

Do herbs really work? Many prescription drugs are made from single extracts of herbs or fungi. These extracts are the ones that pharmaceutical companies have deemed to be the most effective. They are extracted and you pay an arm and a leg for them.

 

When a bacteria/parasite is presented with a single chemical compound they can frequently rearrange their genetic material (by rotating plasmids and other small bits of DNA) to enable them to become resistant to that single chemical. They can develop efflux pumps which allow them to excrete simple chemicals as soon as they enter the cell. Not only are bacteria capable of doing this but they can also transfer these capabilities to other bacteria through quorum sensing.

 

By using whole herbs you not only get the simple abx-like chemical, but also other medicinal components contained in the herb. These other compounds can have the ability to inhibit efflux (the berberines) or quorum sensing (like rosemary), or inhibit the cytokine cascades produced and required by the bacteria to cause the inflammation and tissue break-down necessary for nutrient extraction by the bacteria/parasite. The herbs that Buhner suggests for each infection has both an antibiotic effect and an anti-inflammatory effect which addresses the cytokine cascades specific for each bacteria.

 

Buhner's idea is that if the specific cytokine/inflammation pathways can be reduced, tissues destruction is reduced, symptoms improve, and the bacteria relying on nutrients caused by the destruction are left weakened. To do this a nutrient dense diet is required to heal tissues that have been damaged by inflammation and to resolve nutrient deficiencies produced by the scavanging bacteria.

 

He doesn't go into the use of probiotics, which can also be anti-inflammatory, in these books, but he is a big proponent of fermentation and has a book on the benefits of fermenting your own beer . We ferment vegetables because it just makes sense to me that if bacteria gain information through quorum sensing, the greater number of benificial bacteria you have, the more chance of them sharing information which could promote less virulance.

 

Buhner in no way suggests that he can erradicate these infections with his protocols. His intent is to instead help heal the body, while at the same time reducing the bacterial load and weakening the remaining bacterial. He then uses other herbs to gently support/modulate the immune system allowing it to keep the remaining load under remission. All of his protocols can be used with precscription abx, and he does state that sometimes abx are necessary to reduce the initial load.

 

Read Buhner's books and make your own decision. I would not have undertaken a strictly herbal protocol when DD was very sick. It may have worked, or maybe not, but it would not have been quick, which was what we needed at the time. DD is at a place now where I think the herbals can support her and help prevent relapse. She has been off abx for 5 months now and has shown no signs of relapse, and no longer flares when she gets a cold or someone else in the house is sick. During a consult, Buhner's associate mentioned that DD would have to be on this protocol for at least a year, and some people have to remain on low doses permanently. This would be fine with me. I never want to end up back at the place where we started.

 

And don't kid yourself, herbs can cause herx reactions. Both DD and I (I am treating myself with herbs as well, and see the effects) over-did houttuynia (one of the main herbs for bartonella) there for a while and it wasn't good.

 

Just to cover all bases, and because Buhner says his can be used with other protocols, we are now adding A-Bart (ByronWhite) to DD's mix as well. She used it at high doses while on abx, but I discontinued it when she stopped abx in an attempt to figure our the correct dosages for Buhner's herbs. We started again 2 weeks ago and are pulsing it 5 days on (1 drop BID), 2 days off and getting pretty much the same herx reaction cycle I saw while we were pulsing abx. Symptoms ramp and then decline over a couple days, getting back to a baseline on the days off.

 

Just like we saw with pulsed abx, the second pulse is not producing the flare that the first one did, my indication that it is time to increase the dosage of A-Bart. I am charting herbal dosages on my handy-dandy Excel chart just the way I used to chart abx.