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Beyond Lyme...What have we missed?

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Hello All,

We've been in the fight for almost 2 years now - you can read our earlier posts to see the history. But here is the brief update and some questions for the experts out there. His tics were so bad when the erupted that we had to use psych medicines even though we hated it - nothing else worked. We found a good LLMD - and DS had a positive test from Adv Labs. DS has been on a cocktail of abx for 7 months now - Tindamax, Cefdnir, Calrithomycin and Rifampin for Lyme and co-infections. Hes also been taking herbal supplements for tamping down inflammation (Enhansa, NAC) and detox (Burbur).


We've also been doing charcoal for any mold issues.


Over the summer (past 4 weeks) we've been trending down the psych meds to the point where we thought we could eliminate them entirely. Over the past 3 days however the tics have come back fast and furious. So my questions...


1. Have we missed something? Parasites perhaps?

2. I would have thought that with the intense attack against Lyme there would have been SOME improvement - is this thing really so hard to kill?

3. Should we consider IVIG?

4. Any other ideas for tests / treatments?



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Has he been checked for strep or mycoplasma p infections? From research I have learned that a vocal tic can be associated with strep and rhuematic fever.


Do the psych. meds. seem to help the tic? They made my son's vocal tic worse and we had to stop them. The tic is much better but goes wild when his blood pressues fall out.


I would suspect somrthing else might be bothering the tic. Maybe a virus or allergies? Might want to check for allergies or mold.

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Rachel - our LLMD says mold testing is iffy and not really value for money. She suggested charcoal (which we have been giving). The strep and rheumatic fever tests - are these through traditional labs?


Yes the psych meds seem to help - but we hate using them - DS becomes lethargic and puts on weight - but its a deal with the devil, I suppose...


Wondering how the immune system plays into all this ... or if this is herxing related - I've read about a 3 week cycle for Lyme - perhaps the psych meds had been "masking" this cycle but now it is becoming apparent...so confusing....so depressing...

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one way to think about what you are doing: you seem to be covering all the basis and I would think that there is little to add.

What else could you discover that would require a radically different treatment, something you are not doing already? I see really nothing.

Then, you can turn to what you are giving and ask if there is a side effect, like NAC has very positive effect on both of our kids but also very negative because of the sulfur.

have you done any genetic testing?

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I took my son to an immunologist in December 2013. His medical condition started with a walking pneumonia infection in December 2010. My son had a Mycoplasma titer show up high and out of range 2 months later but was never told this information until 6 months later. My sons symptoms would get worse after he had viruses, infections, and the flu. The immunologist ran testing through LabCorp and our insurance paid on the testing. My son was checked for mycroplasma P, Cytomegalovirus, EBV, Anti-DNase B Strep Antibodies, Herpes Simplex virus, Antistreptolysin O Ab, Chlamydia p, and Parvovirus. The IgG and IgM were checked on all of these viruses.


A strep infection can cause Rhumatic Fever and the antineuroal antibodies found in PANDAS. My son would never test postive for strep until this year. The Anti-DNase B strep antibodies test shows the levels of strep antobodies for past strep infections that could be up to a year old. I had no idea that my son had a possible problem with strep until this test was ran. My son also has a problem with Mycoplsama P. because these antibodies showed up again a year later after a test in 2012 showed nothing in his system. The Antistreptolysin O Ab test shows a strep infection that has happened within the last 4-6 weeks.


I don't know if past viruese would be causing your son problems but an immunologist could run other test to check for a supressed immune system. Now might be a good time to have that done since your son has not had IVIG yet. From what I understand, IVIG will interfere with that testing.


My son has heart and blood pressure problems. He has tested highly likely on the Cunningham test but does not have PANDAS. His symptoms did not happen over night, his symptoms have just keep progressing since he had walking pneumonia. Many of my sons symptoms match rhuematic fever and the Sydenham's chorea that's part rhuematic fever can wax and wane for up to ten years. The vocal tics are are known to happen in males with Rhuematic fever. To help with vocal tics, my son does use Intuniv. However, it does not help when my son's blood pressures fall out. His vocal tic goes wild until I can get his blood pressures to come up.

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FWIW, at 7 months into lyme treatment (and 2.5 yrs on single abx for Pandas), DS was only at 75% baseline. But that was an improvement from the time we'd started (maybe 60% baseline). So with all you've done I too would be looking for signs you were on the right track but also realizing it's a very long haul. It took us 2.5 yrs of combo abx to be at a point we could stop abx altogether.


Are you pulsing tindamax? If it's one you're still using, maybe take a holiday. Tindamax was brutal for DS and after only 5 weekends at 1/2 dose, he was in a constant herx that brought tics back in force. We stopped the tindamax and it was like the sun coming out after a hurricane. Cefdinir also produced a strong herx, as it crosses the BBB - lots of emotional outbursts. So consider rotating, pulsing or taking a break from one or more abx for a bit.


I agree with your LLMD that mold can be a giant money suck and testing is ambiguous. But I found the blood work that Shoemaker lists somewhat helpful http://www.survivingmold.com/diagnosis/lab-tests - we didn't do all of them. Our LLMD did the ones he felt were most helpful regarding inflammation.


In terms of environmental testing, we didn't have the budget for a $400 ermi test that wasn't going to tell us specifically where a problem might be. So my cheap way of getting peace of mind was this: I bought $10 mold test kits for the bedrooms, the game room, and the basement. Instead of doing a settle test for an hour as suggested on the directions, I left the plate exposed for 24 hrs. - one major fault of the settle plate testing is that it may not capture lighter mold spores that hang in the air, so an hour exposure will bias your results toward molds that are heavier. So a 24 hr exposure gets you a somewhat better sample. I then sent the plates that grew stuff to the lab for species identification. My reports came back with 3 species, all of which are ubiquitous outdoors. I was at least able to feel a little reassured that there were no "bad" species like aspergillus in the air and my husband was able to talk me out of taking a sledgehammer to the sheetrock in some irrational fear there was horrible stuff growing behind the walls. Now I realize this is far from a fault-free plan. But it fit into my $100 budget and gave me a little peace of mind. I also know that DS's tics come and go, making it less likely he's in a chronically sick building, which helped me give the settle plates a little more validity.


DS has shown inflammation on the Shoemaker markers from time to time. So our plan is to use cholestryamine the same way you might use a steroid-burst. For a brief time, to try to lower symptoms that way you'd use an antihistamine to alleviate allergy symptoms. Haven't had to pull the trigger on that one yet. But maybe talk to your LLMD about blood work and possible short term mold treatments - if you feel that herxing isn't more of a cause for the tics. Inflammation and poor detox have always been behind DS's tics when they crop up.


Finally - only my personal opinion - but IVIG caused a huge herx for DS and in the short-term, did much more harm than good. Some have had better results, so there's no universal answer. But just know there's a downside. Post-IVIG was by far the worst 10 weeks of our 5 year journey. Make sure you've explored other options and be comfortable with IVIG - don't do it because you think you "should". Do it because it makes sense for your individual situation and budget.


Hang in there....

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If I can add one thing, it is that our vivid personal experience has been:


when you are 'trending down on the psych meds' (and by your description, I am assuming you mean Risperadone/ Abilify)


you must go very, very, very SLOWLY to taper off.


We almost have my dd9 off Risperadone (and YES, I loathe the side effects of this drug).


We are treating Lyme/PANS again with substantial improvements, but we have had to go extremely slow weaning off risperadone at the same time. Almost off of it, but frankly, (and I have emotional scars from the time we went too fast, it was soooo awful for her) I am meeting the prescribing Dr. for this drug again on Monday to get in pill form the lowest possible dose, because what I have I am chopping up into bits, it is not accurate.


Weaning too fast while treating gives confusion on what protocol is causing what-

So thought I'd open up and share that-

Edited by SSS
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Thanks all - good pointers. We had been trending down on Risperdone and Intuniv - very very slowly - as SSS points out but now we are being forced to raise them up again. We've been off all abx - today is day 3, thinking that this might have been a herx - but so far there has been no effect on the tics...so am not sure if herxing is the issue.


So am really questioning what the abx have been doing for 7 months if there has not even been a 10% improvement (i.e. we have not been able to titrate down on any of the psych meds). But I temper that thought when I see that there was one whole month when we were down on all the psych meds and had no tics coming back. We suspect that something (mold in one of the summer camp buildings?) might have triggered something....so hard to tell....


We will consider doing an immune system work up - although in the past DS's IgG and IgA counts were in range. Specifically, I read on this forum that people found anti-protozoan drugs to have an impact? That's something we have never tried. Plus we are considering IVIG....


Please keep your suggestions coming. We have a month before school begins and would like to find a few answers before then.


Thanks to everyone!

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The easiest thing to do within the next month would be to rotate one of the antibiotics he is on.


Our LLMD has always described treating Lyme and co-infections as a game of 'Whac a mole'. You pound down on infection then another needs to be treated. For example: the Lyme is under control but now the Bartonella is an issue.


I think you might regain some ground with a rotation minus the Herx

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Thanks sf_,mom - I'll pick up that thread with our LLMD.


But to clarify, what you're saying is swap one of the antibiotics DS is on, with another? Right now he is on a cocktail of abxs - Clarithomycin, Rifampin, Tindamx (pulse) and Cefdnir. Do these 4 not cover all of the bases (i.e. Lyme and Co-infections)?

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You are well covered for Bartonella but after seven months maybe its time to hit the Lyme harder. Making a rotation to more effectively treat a specific bug has always brought a baseline improvement after initial herx for us.


Some of the antibiotics that might be more Lyme focused would be Doxycycline, Azithro, etc.


Biaxin 'Clarithomycin', Rifampin and Cefdnir are Bartonella focused and you have probably WHAC'd that infection down for now. It doesn't mean its gone but having less of an impact giving other infections to surface. Hopefully, the concept is making sense.


We have pulsed Tindamax for periods as well. Perhaps discuss taking a break with LLMD and reintroducing further into treatment.

Edited by sf_mom
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Thanks sf_mom. Our LLMD does not want to give doxy (although it is a really good candidate) because DSs baby teeth have not all fallen out yet and doxy could affect the adult teeth that are yet to come.


We've stopped tindamax for now. Trying to control the tics through anti-inflammation (Boswellia, Ehnansa, Fish oil)- even the psych meds are having a limited effect....

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I wouldn't dismiss mold without further investigation. It is certainly one of the main things that can prevent a recovery from Lyme. Charcoal isn't the treatment of choice for mold and if he's in a moldy environment, treating it won't do much good anyway. The first thing to do is run an ERMI test on your home - it's $290. This will tell you if there's a high mold level in your home and you can make decisions from there.

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