getting worse before better?

[scoobymummy]

Do kids using zithro get worse before they get better? Ds took 7 days of zithro, he's been off for two and starts to take it three times a week tomorrow. I thought he was reacting to the red dye, so I'm waiting for the ped to find us an alternative, but he hasn't had the syrup for two days and he looks awful (worse than before he started the antibiotics) - circles under his eyes, pale, anxious.

[peglem]

Do kids using zithro get worse before they get better? Ds took 7 days of zithro, he's been off for two and starts to take it three times a week tomorrow. I thought he was reacting to the red dye, so I'm waiting for the ped to find us an alternative, but he hasn't had the syrup for two days and he looks awful (worse than before he started the antibiotics) - circles under his eyes, pale, anxious.

My child always did really well on zith, but never did the liquid. Did your son get worse while on it, or just not better? Could it be yeast?

[scoobymummy]

He seemed to get worse. I was expecting the upset stomach, but he's really spacey adn looks awful. The doc will be back from a conference end of next week, so hopefully a switch off the red goopy liquid will help. He doesn't have any of the signs of yeast, so don't it's that.

[peglem]

He seemed to get worse. I was expecting the upset stomach, but he's really spacey adn looks awful. The doc will be back from a conference end of next week, so hopefully a switch off the red goopy liquid will help. He doesn't have any of the signs of yeast, so don't it's that.

Has he used other abx that have been more effective? Please let us know what the doctor says!

[peglem]

How are his bowel movements? Could be C.difficile?

[LNN]

Have you tested for Lyme? Could this be herxing?

[scoobymummy]

Have you tested for Lyme? Could this be herxing?

 

Haven't checked for lyme yet - what is herxing? Also, can he have the lyme test while on zithro? I don't want to stop the treatment.

Edited July 19, 2010 by scoobymummy

[scoobymummy]

How are his bowel movements? Could be C.difficile?

 

bm's and digestion are normal (apart from naseau from the antibiotic - last time that cleared up as he got used to the meds)

[kimballot]

Scoobymummy -

I glanced at your previous post and I am not sure where / what type of infection your child has. Azith works well with intracellular bacteria, like intracellular strep or mycoplasma, so many find it effective. It may be that azith has started addressing your child's infection, but you either need a longer course of high-dose, or you need a different antibiotic.

 

Have you done blood work, like immune panel, strep titers, mycoplasma (I know you said you've not done lyme yet). Did your child have a positive throat culture?

 

Finally, are you working with a PANDAS doc? I don't recall that from previous posts. Consulting with someone who specializes in PANDAS could be very beneficial. It is unlikely that your insurance would cover this, but your insurance should cover the tests they order and the time you spend with them would be very beneficial.

[scoobymummy]

He's tested positive twice for strep titers - throat culture negative. 3 out of 4 of us have the strep titers. We haven't done the other two mentioned. The doc we're seeing is a DAN doctor - very well read and open-minded to investigate new ideas. Not sure how much experience she has with PANDAS specifically, but I know she'll be open to doing other tests if I request it.

 

Ds responded beautifully to the azithro the last time we did it. I suspect he's reacting to the dye in the antibiotic (he looks a bit better this morning and that's 3 days away from the meds). We start the three days a week dose today, and I'll still be using the red goop, so we'll see what he's like tomorrow.

Edited July 19, 2010 by scoobymummy

[kimballot]

He's tested positive twice for strep titers - throat culture negative. 3 out of 4 of us have the strep titers. We haven't done the other two mentioned. The doc we're seeing is a DAN doctor - very well read and open-minded to investigate new ideas. Not sure how much experience she has with PANDAS specifically, but I know she'll be open to doing other tests if I request it.

 

Ds responded beautifully to the azithro the last time we did it. I suspect he's reacting to the dye in the antibiotic (he looks a bit better this morning and that's 3 days away from the meds). We start the three days a week dose today, and I'll still be using the red goop, so we'll see what he's like tomorrow.

 

 

If you cannot find zithro without dye, could you try a different antibiotic? It does not sound like the zithro is producing excellent results this time around, so something else may be as good or better.

 

I would also check for mycoplasma and get immune status panel drawn just to get a baseline and see if you are dealing with more than strep.

 

Also, when were the strep titers drawn? You might want to re-draw them to see if the numbers are going up, down, or staying the same. Be sure to get ASO and DNASE B.

 

I'd try to find a PANDAS doc to work as a consultant with your DAN doc... it is great that you have a supportive doc.. maybe consulting with a PANDAS doc will turn your DAN doc into someone we can add to our list!

Edited July 19, 2010 by kimballot

[LNN]

Have you tested for Lyme? Could this be herxing?

 

Haven't checked for lyme yet - what is herxing? Also, can he have the lyme test while on zithro? I don't want to stop the treatment.

per wikipedia

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment.

 

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours. The intensity of the reaction reflects the intensity of inflammation present.

 

The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]

 

The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]

 

 

Sometimes the start of antibiotics can make symptoms worse before it gets better...

[PacificMama]

Hi,

 

I pop back in here every once in a while -- my daughter had PITANDS (lyme induced).

 

I have said this a whole bunch of times on this forum, but getting worse when beginning or changing antibiotics is a CLASSIC symptom of lyme and/or similar coinfections. As someone else noted, it is called a herx reaction and only certain diseases will produce this (NOT strep). Azith is a very common treatment for lyme, and it always produced a herx reaction when my daughter started it. Getting worse means an exacerbation of symptoms, or appearance of new symptoms. And sometimes this just means that anxiety and irritability increase.

 

PLEASE contact Igenex labs and ask for a test kit to be sent to you. They are a lyme/ coinfections specialty testing lab, and one of the only reliable ones out there. It's almost not worth it to rely on any other lab.

http://igenex.com

 

I guess it is possible for it to be yeast related, or food dye. But honestly, anyone who gets this reaction should absolutely consider lyme -- as herxing is one of the telltale ways of verifying a diagnosis.

 

Best Wishes.

Mary

[scoobymummy]

OK - onwards to Lyme disease testing. Argh. Sometimes I feel like a hamster on a wheel. Started with the SPD label, spent a year researching that, got changed to ADHD, spent two years researching that (including gfcf diets, therapies, etc), now PANDAS and , as usual, it's more complicated than it first would seem. I feel like my head is going to pop off. Deep breath. One thing at a time.

 

Can someone direct to an info source that starts at the begining? I need to understand the difference/connection between strep and lyme and what tests I should use as a starting point.

 

Does anyone know a PANDAS doc in Ontario?

Edited July 20, 2010 by scoobymummy

[Joan Pandas Mom]

If you test for Lyme make sure it is through Igenex lab. It is a send out. They are the only lab that test bands 31 and 34. I was told bank 31 is the most important. Good luck.