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Hi all,

 

Just hoping for some suggestions here:

 

Recap: DS (23) diagnosed Dec. 09 with lyme, all bands positive and RMSF (was regular kid w/job/car/friends)....starting treating with 1st LLMD....DS very angry/let hair and beard grow (looked like mountain man), started listening to RAP music (which he never liked) all within 1st 6 months....started see Dr. B in Red Bank also.

 

then switched LLMDs, all those symptoms went away and then starting being paranoid, calling police to confess car accident that he had had year earlier, washing hands, going in bathroom for long periods of time...at some point was slamming doors badly (broke molding off the doors)...then all that went away, stayed with that LLMD for 1 1/2 years...son still getting worse mentally.

 

By this time on all kinds of abx, IV doxy for 9 months, shots..too many to lists

 

DS started laughing daily, uncontrollably for long periods of time...still does to this day.

 

Took a few months between LLMDs at this point and took DS to local doc who does treat lyme and wanted to test for metals / parasites....no parasite, metals fine....they found babesia.

 

Starting treating that too.

 

Fast forward to now...with new LLMD (8 months now) still seeing Dr. B who has prescribed numerous meds to try and "connect" and stop the everyday laughing, which is not only hard to listen to ALL day but it can get VERY loud, it must be hard on his body.

 

He also "talks" to himself or someone (scary) because he'll talk during his laughing so its hard to make out what he says. Also will repeat a lot, either something from the TV or something we (his parents) are saying. If he's quiet, I can see his lips moving sometimes.

 

FYI: He doesn't "talk" to us...sometimes 1 word answers but that's it. Sometimes the answers aren't correct for the question so we can't always count on that.

 

The only thing that seems to work "maybe" is seroquel. I hate giving it to him but I figure he needs a break. It does quiet him down some but not always.

 

Currently on Rifampin/Mino/pulse Tindamax (for possible Bart), and Malarone/Zhang's Artemesia (Babesia) and a lot of supplements. Positive for A1298c (?) mutation, positive myco, ASO AB high, and a few other things.....don't really want to list it all, too much.

 

Also getting appt. with Dr. O in CT soon (hoping they can help shed light on why he's never gotten better).

 

Didn't know about PANDAS back then, no one mentioned it...now thinking he had it also.

 

Anyway, my question: Is there something you all give your children to help with psych symptoms or do you all just give abx / supps and hope/pray they just get better, these type of symptoms go away?

Seeing Dr. B today and was hoping to suggest something...I research this ALL the time and come up empty. FYI: tried Neudexta and it didn't work.

 

 

Still trying after 3+ years....all this is just horrible.

 

His Mom

 

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Hi,

 

thank you for the suggestion.

 

Just to clarify...my DS is no longer angry, stopped that within 6 months...quite the opposite...he is very calm, nice, polite - easy to be with. Doesn't do any of the OCD or angry stuff anymore, which is why not sure if its PANDAS or just the lyme/babesia/bart/myco stuff. Can laughing be a tic?

 

Was just wondering if there was something I could give him for the laughing.

 

thank you

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I think laughing could be a tic, my DS13 itches (it's always moving and stops when he sleeps- which says to me it's neuro and we've all but ruled out all other systemic origins, altho Bart could be at play here which we are truing to run to ground) and I'm sure it's a tic, so why not laughing?

 

My DS was perfecfly normal too, until he developed itching overnight, pos for Sretp A and then the onslaught of pysch stuff just stared cascading down on him as well.

The ONLY thing I've seen any pos impacts from, and I'll admit it's a very tiny positive, is from ibuprofen. Dr. T Rx'd 3 doses of 750 mg a day ( he's 6'2" 155 lbs). Other than that the psych meds we tried made him way, way worse.

 

Hang in there....

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Hi,

 

thanks.....funny you mention itching...my DS always itches his nose, constantly.

 

We were thinking possible yeast but he just finished a 10 day difflucan a couple of weeks ago "just in case" he has yeast. Not sure if he does, can't ask him anything.

 

I'll try the ibuprofen (Advil, yes). See how he does., thanks.

 

Have your tried seroquel? I give my DS 75-100 mg. on bad days. Does seem to help some.

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No seroquel, at least not yet. Have Psch appt early Aug, so will see what comes out of that meeting, new Dr. so I'll ask. My DS is hyper nervous to try anything since he's plummeted into black hole too many times, even Vit D and Omega 3 are death spiral for him...

 

We are trying to get PEX lined up, 2 HD IVigs havents been the ticket, but trying to make sure he's not got occult infections still at play, and he might have biotoxin illness, so like you we are peeling back the onion best we can.

 

Hoping you get your DS some relief soon~

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Try reading the book Lyme Co infections by Bruhner. It talks about addressing the Cytokine cascade which in turn helps with the neuro symptoms. There are various herbal remedies that our LLMD recommended to us to stop the neurologic effects of lyme and it's co-infections. Once you can halt cytokine release you can get a better grip on treating the bacteria.

 

Dedee

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The only things that stopped our son's descent was IVIg and steroids. They seemed to arrest the symptoms long enough for the antibiotics to kick in. That being said, we are almost three years into treatment with ABX, and I still see some of the same behavior you are seeing; the talking to himself. DS, also laughs inappropriately (read excessively) in movies. I wish you all the best.

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Steroids 4 times during first 12 months, first run = no reactions pos or neg, next 3 run successively were worse as all symptoms (rages, tics, neurotic behaviors, talk of suicide began) ramped way up and then stayed up. Scared to death to try steroids again, ever! I then read on the NIMH PANDAS page that steroids can exacerbate a tic-presenter vs. the OCD presenter. Sigh.

The IVIg's maybe have helped, hard to know as we saw nothing of note immediately but have seen a gradual lessoning of demon voices, completely losing it type behaviors, and he is more mentally 'here' than he was 12 months ago, but he's also become even more sad/suicidal, deeply depressed. His PANS has debilitated him, no school for 2 years, cut off from friends, etc. Monster of an illness as we all know.

Also, many thanks for the book ref Dedee, on my way to find it.

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Hi,

 

DeDee: I did buy the book, haven't read it yet though, will start....did any of the herbals help? If so, which ones? thanks

 

CobbieMommy: I thought you can't give steroids if you have lyme and coinfections?

 

D'sMom: ibuprofen. Dr. T Rx'd 3 doses of 750 mg a day....that's 3 Advils 3x day, yes? Instructions say no more then 6 a day. Does he have lyme or coinfections?

 

thank you all for your help

His Mom

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D'sMom here: yes, DS13 is on 3 Ibu - 3 times a day. I have tried to scale him back but he starts to become sadder and wackier...

We had been Rx'd 2 Ibu 3 tImes a day two times previously over the first 12 months of PANDAS but it did nothing, it took the extra 250 mg added to the dose to impact him.

 

So, after Dr. T Rxd the Ibu dose at 3, I queried DS's Rheum Dr about dose and she said No Biggie, much higher doses are common for kids with arthritis, etc. Plus, my boy is TALL, 6'2" if not 6'3" by now, but trim. He's maybe 160 lbs I think. Maybe their size impacts the dose that helps?

 

Also, we do believe he's got Lyme, and/or a Bart coinfection, but we just found out he's got a potential mold induced biotoxin infection (his C4A results were over 89,000) so that's first line of attack right now, hope to see traction there soon so we can re test for Bart, then try to treat before potential PEX in Oct.

 

Hope the Ibu can help your DS, even if its only a tiny bit.

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Steroids are contraindicated with bacterial infection, so that may be the reason for your negative steroid results. If the immune system is supressed, infection will escalate.

 

We are treating with the newer Buhner protocols for lyme and bartonella. I began DD on 3/4 the max dosage for adults of japanese knotweed, houttuynia, sida actua, tumeric and allicin, along with low dose astragalus and ginseng 3 months ago. She still has positive bartonella titers and I didn't want bart to get away from us. After 1.5 months we began to see significant herxing (panic attacks, some long bone pain). I pulled her off everything (except for 1/2 dose knotweed tincture and 1/2 dose sida) for several days and herx symptoms declined within a short period. However, after 4 days she began talking and moving excessively, ticcing and just generally being nasty. Talking back, non-compliant etc. I thought, just for the heck of it, I would increase knotweed (anti-inflammatory) back to full dose to see what happened.

 

Within 1/2 hour of the tincture she was back to what I now recognize as her normal self. It was like a switch for her. Calm, compliant, happy, helpful even - doing things without being asked, ticcing declined back to near-absent. She apologized for how she had been acting and didn't understand why she had felt that way.

 

Ibuprophen has never worked for us, and although DD has been on Japanese knotweed for some time, I didn't realize what a difference it made to her brain inflammation, and I was more than amazed at the result of increasing her dosage back to Buhner's suggestion for her size (76lbs).

 

All of this happened about a month ago and she remains very close to remission on 1/2 the adult dosages of herbal tinctures/decoctions. As per Buhner's recommendations we use tinctures from WoodlandEssence and powdered herbs for decoction from 1stChineseHerbs.

 

Buhner does mention in all of his books that his protocols can be used along with abx treatment, so I would seriously consider suggesting this to your LLMD if you like what you read in the book. He is supposed to have a new book on babesia treatment coming out next year, and although DD has never had what are considered to be babesia symptoms, her greatest improvements came with a pulsed babesia protocol which included malarone, azithromycin, minocycline, plaquinel and tindamax. It was after this that we were able to withdraw abx and not have an immediate relapse.

 

We are also continuing with a lowish dose methylation protocol which includes sublingual methyl B12 and liposomal glutathione daily, methylfolate and P-5-P Mon, Wed and Fri.

Edited by rowingmom
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I'm wondering if any of your doctors have ever tested for parvo or toxoplasma gondii. I don't doubt that your son also had/has the other infections you've found, but you might find this article very interesting http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/

 

Given your location, I'd also consider/test for the effects of mold toxicity. Here's a brief discussion of how mold can trigger neuropsych issues: http://www.survivingmold.com/diagnosis/the-biotoxin-pathway

 

Here's a list of tests that are worth discussing: http://www.survivingmold.com/diagnosis/lab-tests

 

mold can be just as debilitating to a PANS kid as an infection.

 

Hope you find some answers soon!

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