Allie's strep is back

[peglem]

I just can't believe this! I'm so sick of this evil, demonic bacteria! She's been battling yeast since all the antibiotics she's been on with the strep. Since her tonsillectomy, she's been testing neg. for strep. So today I take her in on the yeast, and since she has a bit of a thick nasal discharge- we decided to run a strep. I'm so disappointed! I was just getting used to the idea that its OK to hope that her brain will have a chance to heal.

[milivica]

I am sorry :( . Doesn't seem like too much to hope for...to have the strep subside after getting her tonsils removed.

I hope the strep at least is less intensely painful. I have rarely gotten strep since my tonsils were pulled (at 17) and the throat pain I've had cannot compare to how aweful it was with tonsils. Doesn't change the strep issue returning and the dissappointment I know you feel. What a let down. But at least I hope she is less uncomfortable (downright painful as I recall, with tonsils anyhow).

(((Mili)))

[peglem]

I'm thinking the infection is mostly in her sinuses, since she didn't test + until the sinus congestion started dripping down her throat. She hasn't been eating much the last 2 days, maybe from sore throat, since y'know that risperdal boosts the appetite...Oh, oh! Here comes Isabelle!- Just joking Isabelle- I love ya! Anyway she's been saying, via aug comm that she needed a doctor. When I asked her where it hurt, she said nose. But, that was 3 wks. ago and she tested neg when I took her to the doctor. The worst part is she starts this hyper, hyper stuff that makes her low function into almost no function- can't do much while she's whirling both arms full circle and racing full speed from one end of the house to the other-I seem to recall my other kids getting lethargic and less active when they got sick. We'll get through it and her "behavior mod" school is only until Christmas break:p

[milivica]

I don't want to say anything accidentally irritating or gross but I want to be factual in case it would matter for Allie. For me, there was a DIRECT link between my sinuses having a brick of green snot in them with threads of blood (from what saw in the toilet when I managed to get it out eating hot peppers) and DAIRY. I'm guessing it was a lactose thing? And I don't want to go ballistic pushing a non-dairy diet or non-gluten diet (did that already in 2001, 2002, 2003 and 1/2 of 2004). I say lactose, cause cheese seems to be more tolerable, but not in big quantities, and I know how cheese (hard textured dairy) is processed changes the lactose by comparison to the soft dairy like milk, ice cream, sour cream etc...

You probably already know dairy is a mucus maker, and depending on the person a diareah or constipation maker. But I just had to mention it, just in case.

Mili

[callyflower]

Try using xylitol spray (Xlear is the name of a good one) in the nose twice a day. Xylitol is a natural sweetener that will kill strep like nobody's business! Also, use Xylitol toothpaste and mouthwash (if she can handle that.) Biotene is an easy to find brand of those.

Good luck.

[peglem]

Mili, Allie was CF/GF for about a year. The dairy didn't seem to make a difference, and anyway, she's not much of a dairy consumer- never drinks milk, seldom ice cream, but she does enjoy a bit of cheese or yogurt. We continued only GF for several more years and just went off this summer- once we figured out that it was the strep causing her behaviors, not gluten infractions. Giving her back wheat has made no difference at all.

Cally, I'll look in to the Xylitol- why would they make a natural sweetener into a nose spray?

Allie, today is absolutely miserable- and running around like WinnDixie in a thunderstorm- if you didn't see that movie, you should, or better yet, read the book!

[callyflower]

They make sweetener into a nose spray because it kills bacteria!

Cally

[Lara]

I'm so sorry to hear that she's sick with this again.

Just a little tip... throw out ALL the toothbrushes in the bathroom and get new ones for everyone.

Also just wondering if someone else in the family is a carrier... symptom free carrier I mean.

[Isabelle]

Did someone called me? Are you mentioning Risperdal? ;) I love you too.

At all events, you knew that the chances that removing tonsils woudn't really stop the infection it'd would just show up in another part of his body. Apparently it went up to her sinuses and apparently in her brain causing 'behaviours'.

What I've read is that excessive use of antibiotics allows for yeast to propagate.

So, is there any effective treatment for yeast? Nyastin????

Once brought under control...probiotics galore. I read that probiotics help also on yeast propagation. So, first eliminate yeast, then eliminate the source of infection, then probiotics galore. Vitamins for her immune system. The first one in my mind vitamin C.

Is there anything out there to improve her immune system?

Is Allie using augm communication to communicate? Oh, that's wonderful!!!!

Adding, the test came neg. So, could just the presence of yeast causing problems?

[peglem]

Yes, i knew their was a chance of strep coming back after the tonsils were removed-(which is why I didn't let myself get too hopeful at that point)- but 3 mo. w/o a +strep test, I was beginning to get hopeful. Its been a long, long time since she's gone longer than the course of the antibiotic w/o a +strep test. No, the strep probably hasn't gone to her brain (whaddo I know?), the strep antibodies that her body makes in response to a strep infection "mistake" the basal ganglia in the brain for strep bacteria. Even when the strep goes away- she still has the antibodies in her system which continue the attack on the brain, as though she has an active infection. The problem with actually getting the strep is it causes the antibody levels to rise. If she can be strep free long enough, the antibody levels should gradually go down, and then her brain would have a chance to heal if it is not constantly under attack. The basal ganglia is the part of the brain that is usually involved in movement disorders- parkinsons, Huntington's, heck even Hyperactivity.

The yeast is likely from constant antibiotic use. I give Allie probiotic everyday, whether she's on antibiotics or not, and her bowel function has been great- normal stools daily. The yeast is vaginal and bellybuttonal. I'm using nystatin creme on the BB and she's on diflucan for the vaginal (I don't think its a good idea for her to think people can do stuff to her down there!)

[milivica]

Allie, today is absolutely miserable- and running around like WinnDixie in a thunderstorm

((((((((((((((((((((Allie))))))))))))))))))))

I really thought sure getting her tonsils out would fix all this since it did for me. Guess I was just being way too simplistic, can't only use one example (myself) for a 'standard'.

That spray Cally talked about, wow, never heard of that. I know both Carmen and I have breath that is downright lethal. I can actually 'taste' my breath it's so darn strong, and smell that strongness on Carmen's breath too. We are both 'yeasty' people - I wonder if it's related to our breath and if the spray would help. Cally you always have something I never heard of to say...wow.

What Lara said reminded me of something. When I had nonstop mastitis while nursing Carmen (7X's in a row!!!!) it turned out it was because dh had dormant staff in his nose but was symptom free except for a sore he'd complained about way up his nose months earlier and thought it had something to do with the changing weather/season. Then, I remembered this doc a long time ago telling me that if I was correct that Vince had continual yeast issues (back when he always had loose yellow unformed explosive stools) he said it was because there had to be an underlying issue cause there is no such thing as - ugh I can't think of the words - there is no such thing as having chronic yeast issues, chronic yeast is a symptom of an underlying cause. Then, someone here suggested even mercury could be a 'possible' underlying cause and if it were removing mercury 'may' correct the yeast.

Anyhow, I'm sputtering out thoughts in case it sparks something for you...might not...but I hope it does. I'm betting you've been through this connect the clues a million times in your mind already though and eliminated anything I could come up with. What can I say but (((((peglem))))).

Mili

[peglem]

I think mercury could very easily be the root cause of Allie's problems. I often wonder why, if she has so d*mn many strep antibodies, why don't they get rid of the strep? So, I'm thinking immune system dysfunction, which of course, an autoimmune condition is anyway. Her doc has contacted an immunologist about her who said he couldn't do anything for her that was not already being done. Somebody on another forum suggested an infectious disease specialist. I think that tons of people with this problem are misdiagnosed with something else because the strep connection has not been made- so that this is considered a "rare" condition and not many docs know about it or recognize it for what it is. So, where would I find Xylitol spray? Is it only available a health food stores, or does Walmart carry it? (please don't make me go to Walmart, please don't make me go to Walmart...)

[peglem]

Okay, I don't have to go to Walmart! Strange, turns out we have some Xlear already! My husband got a sample from somewhere! I'm gonna try it.

[Isabelle]

Yes, the immune system keeps on producing antibodies which in turn attack the basal ganglia and antibiotics don't work on them. Do they found high strep antibodies on her blood? Or, drs took a swab to her throat?
As Mili says perhaps is another bug or the immune system is going nuts.
Something that I'm starting to believe that is Danny's underlying problem, now that he is off meds perhaps we can see the real picture.

[peglem]

Isabelle- We have both throat swabs and high blood titers. This time it was just the throat swab, because once that is +, you know the titers will be high. But, she has tested with high titers in the blood when she has a neg. throat swab. The thing is her behavioral****ement symptoms get much worse in correlation w/ the strep. Between strep episodes, which is when she is on antibiotics usually, we see improvements in symptoms.

Cally- that xylitol spray is GREAT! w/ 10 minutes of the 1st dose Allie's very thick, nose mucous was gone! I'm gonna get tons of this stuff and make the whole family use it! My husband claims he got it from Alie's doctor long ago, when he took her to the doctor. Sure wish I'd known about this sooner!

[callyflower]

Glad to be of help. Be sure and pick up some Biotene or Spry toothpaste while you are at it!

Cally

[tgrimes]

I'm so sorry to hear that she's sick with this again.

Just a little tip... throw out ALL the toothbrushes in the bathroom and get new ones for everyone.

Also just wondering if someone else in the family is a carrier... symptom free carrier I mean.

What a good tip... you can just reinfect yourself with the toothbrush, huh?

[Lara]

Yeah. That's the theory.
It's something I always did here as my son had some major problems with GABHS infections as a young child.

from Medical Encyclopedia (http://www.nlm.nih.gov/medlineplus/ency/article/000639.htm)
Prevention

Most people with strep are contagious until they have been on antibiotics 24-48 hours. Thus, they should stay home from school, daycare, or work until they have been on antibiotics for at least a day.

Get a new toothbrush after you are no longer contagious, but before finishing the antibiotics. Otherwise the bacteria can live in the toothbrush and re-infect when the antibiotics are done. Also, keep your family's toothbrushes and utensils separate, unless they have been washed.

If repeated cases of strep still occur in a family, you might check to see if someone is a strep carrier. Carriers have strep in their throats, but the bacteria do not make them sick. Sometimes, treating them can prevent others from getting strep throat.