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EmersonAilidh

Because God forbid ONE thing is ever just normal...Thr

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Throat culture came back today... Guess what? Whatever the #### was at the back of my throat in that photo, it wasn't strep!

 

As a sick kid, I'm really good at knowing how I "feel". For example... My stomach doesn't hurt the same way everytime. When I have stomach issues I can tell if I accidentally ate gluten, some sort of meat product, or caffeine. I posted a little while ago that I was waking up with my stomach hurting in a way I'd never felt before. Since that post, that's been happening all the time, & not only at night. I figured that the way that I've been feeling since Halloween, a new different kind of "bad" entirely, was just how normal kids felt with strep. I guessed that my luck in the "asymptomatic" department had run out.

 

I feel lightheaded & dizzy. For the first time in years, I feel "not here" & have had two real episodes of depersonalization that I haven't told my Mom about. My "throat of steel" burns. Today, the sun was BLINDING. I feel like I just got beaten down by a group of men after running a few miles even though I started a Nuvigil prescription a week ago.

 

I was so sure that I've had strep this whole time, but I'm not too terribly sure why I decided to take a photo of it. I'm happy that I did though, because there's OBVIOUSLY something back there (it's basically gone on day 4 of Suprax), but if it's not strep doing all of this... what is it?

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Emerson, last time my tonsils looked exactly like yours did/do, my rapid and culture came back negative as well. It could be a few things...they didn't swab you good enough, it's a false negative, or as my doctor thought when it was my throat...she thought I had an infection in my sinuses and drainage caused the white spots on my tonsils.

 

On day 3 of abs, I noticed one spot getting smaller, but I still got a couple news ones a few day later. Eventually, it did clear by the end of my prescription.

 

Finally, it could be tonsilitis, which technically is viral but is still caused by strep. How long has your tonsils looked that bad?

Edited by Vickie

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It really looked and sounded like strep to me. You can get negative throat cultures when you have strep. Do you remember if they vigorously (not softly) swabbed both tonsils and the sides of your throat? And how long did they grow it out?

 

If they were doing a straight throat culture they are only testing for strep A. You need to do an upper respiratory culture (still just a swab of tonsils and throat) but it detects other streps. Could that be what is going on?

If you are not sure which test they did you could call them and ask.

 

We used to get negative throat cultures when I knew my kids had strep. Then I learned to ask for upper resp. cultures and sure enough, we got positives for all different types of strep. Ugh... Nothing ever seems straight forward and easy, does it?...

 

Colleen

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Could it be staph? You are still on abx tho', right? Hope it gets better soon.

 

Good tip Colleen...upper resp culture...I'll remember that or at least try to cram it in my brain with everything else.

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Yes, you most certainly could have a false negative. They have to do a good swab of your upper palate, at the back of your throat to hope to get an accurate result on a strep rapid or culture.

 

How are you feeling now that you've been on the meds a few days? Any better? How does your throat look now?

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Throat culture came back today... Guess what? Whatever the #### was at the back of my throat in that photo, it wasn't strep!

 

As a sick kid, I'm really good at knowing how I "feel". For example... My stomach doesn't hurt the same way everytime. When I have stomach issues I can tell if I accidentally ate gluten, some sort of meat product, or caffeine. I posted a little while ago that I was waking up with my stomach hurting in a way I'd never felt before. Since that post, that's been happening all the time, & not only at night. I figured that the way that I've been feeling since Halloween, a new different kind of "bad" entirely, was just how normal kids felt with strep. I guessed that my luck in the "asymptomatic" department had run out.

 

I feel lightheaded & dizzy. For the first time in years, I feel "not here" & have had two real episodes of depersonalization that I haven't told my Mom about. My "throat of steel" burns. Today, the sun was BLINDING. I feel like I just got beaten down by a group of men after running a few miles even though I started a Nuvigil prescription a week ago.

 

I was so sure that I've had strep this whole time, but I'm not too terribly sure why I decided to take a photo of it. I'm happy that I did though, because there's OBVIOUSLY something back there (it's basically gone on day 4 of Suprax), but if it's not strep doing all of this... what is it?

Hi there,

I am so sorry you do not have strep! Just kidding :)

Well, I don't know what to tell you, but I have felt the way you feel now. Not the stomach pains, but sensitivity, the depersonalization, and the feeling "off", then swollen tonsils (not burning here, though). I tell you where I am right now... My tonsils came out in Nov. because no abx seemed to be able to bring them down. Upon culture of the tonsils, they discovered pseudomonas, which is resistant to many abxs (maybe if they had tried them ALL I could have kept my tonsils?) Even after my tonsils came out, ASO is still high. I atribute my symptoms to Lyme, which I have soooo many of the markers for, although tests say NO (but I haven't run the expensive ones yet!). So, are your tonsils still in??? Ever considered taking them out? Are you being treated for Lyme? I am sorry if this is something you covered before, but I'm not been reading daily like I used to (got a life to live, you know?)

If you ever do get your tonsils out, INSIST on a culture with sensitivities.

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Emerson,

All three of my kids (ages 12, 14, 16) were diagnosed "clinically" with strep by our ped Nov 18. All three tested neg on the rapid as well as cultures. All three improved on abx. The tests are not as effective as we'd like them to be. Frustrating? YES! I hope you are feeling a litle better each day.

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It really looked and sounded like strep to me. You can get negative throat cultures when you have strep. Do you remember if they vigorously (not softly) swabbed both tonsils and the sides of your throat? And how long did they grow it out?

 

If they were doing a straight throat culture they are only testing for strep A. You need to do an upper respiratory culture (still just a swab of tonsils and throat) but it detects other streps. Could that be what is going on?

If you are not sure which test they did you could call them and ask.

 

We used to get negative throat cultures when I knew my kids had strep. Then I learned to ask for upper resp. cultures and sure enough, we got positives for all different types of strep. Ugh... Nothing ever seems straight forward and easy, does it?...

 

Colleen

Colleen,

 

Do your children show an increase in PANDAS symptoms with the other types of strep, and do you think you could list which ones they were? Last Feb, my daughter kept testing negative, the other 3 kids were positive on the rapid. Her PANDAS increased. I just assumed the pen vk was causing a false positive, and Dr. L, said you can't tell what is deep in the tonsil--take 'em out.

 

The ENT said the same thing you are saying...it only tests for Strep A, and another possibility was that it was another type of strep.

 

But that is not discussed on this board a lot...so I was curious if you could elaborate on your situation.

 

Thank you!

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My daughters throat has looked like that many times and came back neg. It is painful and I too have been thrown by the neg.culture. After dealing with this so long and knowing you are almost 16 I can tell you it gets so much easier with age. My daughter is now 18 and in the last few month I have seen dramatic changes with no treatment.Your maturity at such a young age can only speed your recovery. Stay focused on things that make you happy.

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Karen,

Yes, my kids have PANDAS flareups with any type of strep. Years ago "they" were saying that it coud only be strep A, which I came to discover is just not true. When my kids were having flareups and we did tests for just strep A, we would sometimes get positives and other times negative, yet they would respond to antibiotics.

 

Once I knew to do upper repiratory cultures, differnt results started coming back. I am pouring over all my old labs right now and this is what I have found so far:

 

1. beta hemolytic strep, NOT group A

 

2. beta hemolytic strep, group B

 

3. beta Streptococcus NOT groups A, B, C, F, or G (feel like I am singing the ABC song....)

**This result was for ME...I had myself tested b/c kids were having flareup. Three years earlier, my daughter tested positive for the same strep, yet my doctor reported a negative result to me, so she was never treated. The same day my son tested postive for strep A, was treated with penicillin, yet still had strep 2 weeks later.

 

I know now that I missed a lot of strep b/c I relied on the throat culture and did not realize it only looked for strep A.

Colleen

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Karen,

Yes, my kids have PANDAS flareups with any type of strep. Years ago "they" were saying that it coud only be strep A, which I came to discover is just not true. When my kids were having flareups and we did tests for just strep A, we would sometimes get positives and other times negative, yet they would respond to antibiotics.

 

Once I knew to do upper repiratory cultures, differnt results started coming back. I am pouring over all my old labs right now and this is what I have found so far:

 

1. beta hemolytic strep, NOT group A

 

2. beta hemolytic strep, group B

 

3. beta Streptococcus NOT groups A, B, C, F, or G (feel like I am singing the ABC song....)

**This result was for ME...I had myself tested b/c kids were having flareup. Three years earlier, my daughter tested positive for the same strep, yet my doctor reported a negative result to me, so she was never treated. The same day my son tested postive for strep A, was treated with penicillin, yet still had strep 2 weeks later.

 

I know now that I missed a lot of strep b/c I relied on the throat culture and did not realize it only looked for strep A.

Colleen

 

Thank you!!

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