a not often urge to scream, a lyme symptom, or PANS, or tic?

[stacestar]

my son (5 and close to symptom free with lyme) had two screaming urges tonight. This happened last month a few times. It doesn't happen a lot, but it seems like recently a few times a month. It's just one or two screams max on the few days a month it happens. He's on herbs, going slowly.

Here's my question: do you think this a lyme symptom, cycling, (b/c it might be cycling). He's so much better now anyway, symptoms few and far between lately.
or is it a tic? it doesn't seem like a tic necessarily, b/c when he's ticced with other things (blinking, sniffing, lip movements) it was pretty consistent and often. With the scream thing, he'll go a few weeks (or more even) and not mention it or do it, and it's not repetitive.

Tonight he said, "mommy, I just have to scream. My body has to." Then he screamed.
Then a few minutes later he looked at me again and said, "mommy, I'm not mad at you or anything, but I'm going to scream, but I'm not mad at you. I just have to, my body has to." Then he screamed loudly again. I just gave him a big hug. It made me so sad.

Then nothing the rest of the evening (thank God). I looked at my symptom chart for him and the last time I noted this was Feb. 8th, about a month ago (unless there have been a couple I missed).

I have seen "urge to scream" on a lyme symptom list. I wonder, is it lyme (or confection), or PANS caused by lyme? Is it fighting the infection that helps, or detoxing, or yeast, or all of the above?

 

thanks for any ideas.

[jan251]

random idea: could it be the opposite of, or related to, "air hunger"? I'm not even sure what air hunger is though I've been seeing it on symptom lists for babesia

[rowingmom]

It certainly doesn't seem like the typical bartonella/lyme frustration/rage reaction.

 

For DD13 this was ongoing before treatment; you could observe it building, and knew what was coming. There was no calmness about it. And it just wasn't a scream; it was a whole spectrum of behaviours - hitting, stamping, etc., with the outburst always directed at someone or something; often herself.

 

You're right about tics happening frequently too. I have never seen a tic that only happens a couple of times a week. But there seems to be that component of "having to do" the tic before the feeling (tingling, tickling, buzzing) subsides. You could ask him if he is having premonitory sensations, although 5 is a little young perhaps to understand just what he is feeling.

 

Good suggestion by jan251. Screaming would definitely result in increased air intake, although for DD her symptoms were dry cough and sighing. I suppose you could ask him if sighing helps or lessens the feeling of having to scream.

 

I have been wondering how your son was faring. Glad to hear he is free of most of his symptoms.

[stacestar]

thanks for the reply Jan251. maybe that does have something to do with it. hmm.

 

and hi rowingmom! thank you for your reply too.

 

I do think the screaming comes with a "have to", premonitory feeling, since he tells me ahead of time. I've read about dystonic tics having that feeling, so maybe it's that kind of a thing. But again, it's so random and rare (thank God) that that is why I question if it is a tic. hmm, confusing, and maybe it doesn't matter that much as long I keep on track with the treatment and detoxing, nutrition, etc.

 

Partly it's curiosity on my part, wanting to understand it, but wondering too if in understanding it better it could be treated better (more exact?)

 

he woke up this morning with ankle pain, and a tummy ache. The tummy aches lately are only a couple a month (if that) but the joint pain is still at about 1-2 days every two to three weeks, (often with the full moon or the new moon it seems)

 

so the fact that he had scream urges last night, and ankle pain this morning, and tummy ache. I think they're all going together as a lyme symptom (or Bartonella?) flare. I may need to increase his herbs; I've been giving him very low doses for the past month.

 

rowingmom, remember the ticcing that I mentioned he was having last fall and winter? well, it lasted from mid-Oct. to early Jan., almost every day. Waxing and waning, almost gone some days, then full blown others. Finally in early January it stopped and he's tic free now. anyway, that's one reason I slowed way down on the herbs. his joint pain and other symptoms never increased through all that though.

 

the llmd wants to test him for bartonella, babesia and bio-films. I asked if we could just start the bartonella Beyond Balance herbs without the test (to save the money) and she said that was ok, so we're doing that as soon as they arrive in the mail any day.

 

as far as Babesia…we may test sooner than later, but I want to start the bartonella herbs first. Maybe I'm dragging this out for him, I don't know. The llmd is kind, but she said something like "we don't want this to take 5 years for him" at our last appt.. (well, of course I don't either if it doesn't have to, but it can take time and I don't want to rush and cause bad herxing.) She wants to pinpoint the infections and treat. I agree with that and treating the infections there, but to spend $600. on tests that aren't accurate, well, I can't afford that right now.

 

I could sense she was a little in disagreement about going so slowly with the herbs (I don't even give him a full drop a day yet), and she may be right, maybe I should up them faster, but I got burned last fall when I did up them and he started the ticcing that lasted three months. That was a hard time and it's made me overly cautious.

 

overall he is feeling good. He'll go 10-20 days in a row lately with no symptoms and his energy is great. But, it's still not done. I want it done, of course we all do. Adding the bart herbs makes me nervous... you know, upsetting the apple cart. But it needs to happen, and we'll do it.

 

got long here. Thanks rowing mom for wondering how he's been doing and for your advice and thoughts as always, and thanks jan521 and anyone else!

Edited March 11, 2015 by stacestar

[rowingmom]

DD13's stomach pain was all from bartonella. Hers was not constant either, but every couple of days she would be doubled over for several minutes with pain. She also had intermittent (once every 2 weeks or so) IBS symptoms, especially diarrhea, that I could never pin on any specific food she had eaten.

 

Both of these symptoms cleared up immediately (within 1 week) with bartonella abx treatment and have never returned. She didn't even have stomach issues on multiple abx - but she was taking hefty doses of probiotics at that time as well.

 

DD did have a bit of ankle joint pain, but not much. Most of her pain was in her long bones (shins and forearms) and skull.

 

Funny about your DS's and my DD's coincidental ticcing. Hers started resolving a couple of months after I discontinued the detox herbs (with licorice), but remained fairly constant at a 2/10 level until January when they suddenly disappeared. This did seem to coincide with the condensation on the windows completely freezing. We changed nothing in the Buhner bart/babs herbal protocol. This has me wondering about mold. It's finally thawing here, so we will see.

 

Nice your LLMD will allow herbs without definitive positive test results. If we had not trialled the babesia herbs I would have never known that DD was dealing with a babesia of some sort. Her tests for both microti and duncani were negative.

Edited March 12, 2015 by rowingmom