Behavior worsens...antibiotics?

[lboll]

Hello all,

 

We have tried our son now on about 12 days of 1500 mg. of Augmentin. We have seen no changes for the positive. If anything, he has gotten worse; less sleep and getting up at 3 in the morning, loud, aggressive.

 

Has anyone else had this experience? I'm wondering if it's worth pursuing a higher dose? Or should we switch to Zith?

 

lboll

[smartyjones]

i really have no advice for you b/c i don't know the differences in abx and the reasons why to use one over the other. . . but i will share our experience.

 

it was when we first discovered pandas, high titers and a + throat culture - approx 3 months after onset of sypmtoms - however, looking back some mild indicators the few months before. anyway, he was put on a 5 day course of azith. many/most seem to have great success with that abx. it was horrible - all behaviors intensified, some that had left returned. he was terribly clingy. i was so happy when the time ended. i don't know if he could have improved if we'd done it longer but i think if it was a longer prescription, i would have had to have changed something b/c it was much worse than with no abx.

 

about a month later, he was put on a 30-day course of keflex. within about 3 days, he was 100% pre-pandas. he did relapse a few weeks off that 30-day course.

 

i don't have much to really back it up, but i am a strong believer in that some abx work for some kids and some make things much worse for some. have you tried other abx?

[lboll]

i really have no advice for you b/c i don't know the differences in abx and the reasons why to use one over the other. . . but i will share our experience.

 

it was when we first discovered pandas, high titers and a + throat culture - approx 3 months after onset of sypmtoms - however, looking back some mild indicators the few months before. anyway, he was put on a 5 day course of azith. many/most seem to have great success with that abx. it was horrible - all behaviors intensified, some that had left returned. he was terribly clingy. i was so happy when the time ended. i don't know if he could have improved if we'd done it longer but i think if it was a longer prescription, i would have had to have changed something b/c it was much worse than with no abx.

 

about a month later, he was put on a 30-day course of keflex. within about 3 days, he was 100% pre-pandas. he did relapse a few weeks off that 30-day course.

 

i don't have much to really back it up, but i am a strong believer in that some abx work for some kids and some make things much worse for some. have you tried other abx?

 

Thank you for writing. This is our first try with the abx so I'm very new to it all. But my son's behaviors have been so terrible, I'm thinking I need to switch, especially after reading your post.

 

Last night our son woke up at 3 am. and moved all of the furniture to the middle of the room. So bizarre.

 

Thanks again,

[ajcire]

I don't know about amox but I know that my son had not been doing his throat clearing tic when I put him on azith... for the first week on it the throat clearing and behaviors started back up more.... I continued the azith and it did stop.. not sure if it was connected to the azith or not... but the dr. did tell me that parents had reported it getting worse sometimes for a few days before getting better.

[thereishope]

Some people may say to give it a whole month, but if you just see things worsening, personally, I wouldn't wait to switch.

[lyme_mom]

Hello all,

 

We have tried our son now on about 12 days of 1500 mg. of Augmentin. We have seen no changes for the positive. If anything, he has gotten worse; less sleep and getting up at 3 in the morning, loud, aggressive.

 

Has anyone else had this experience? I'm wondering if it's worth pursuing a higher dose? Or should we switch to Zith?

 

lboll

Iboll,

 

I hesitate to write but because I sound like a broken record, but you should know that exacerbations of symptoms while on antibiotics is common with Lyme Disease. It is considered a reaction by the body to the die off of the microorganism (b/c toxins are released when the spirochete is killed). Lyme specialists consider temporary worsening of symptoms after a medication change to be a good sign and they do not stop the antibiotics unless it keeps up for a long time. Has your son had a lyme test from Igenex Labs in California or been evaluated by a lyme-literate doctor (ilads-trained)? I would definitely do that b/c the sooner you know if lyme is involved, the better the outcome.

 

Lyme Mom

[thereishope]

Lyme mom,

 

What antibiotic do children receive w/ Lyme Disease? Is ther specific ones to stay away from? I know it probably has been mentioned in the other threads related to Lyme, but I will post the question here as well.

[lyme_mom]

Lyme mom,

 

What antibiotic do children receive w/ Lyme Disease? Is ther specific ones to stay away from? I know it probably has been mentioned in the other threads related to Lyme, but I will post the question here as well.

 

Vickie,

 

My younger two kids took amoxicillin and azithromycin. My 12 year old takes doryx (slow release doxy) and azithro (plus a homeopathic thing called spiro that kills lyme and the coinfections) for lyme/bartonella. He is getting a lot of pains from the die off so it seems to be working. This doesn't mean that a child wouldn't experience a die off with another antibiotic. It is just that amoxicillin and doxy and the preferred antibiotics for getting rid of lyme. They also use bactrim, rifampin or Mepron depending on what other coinfections are suspected. It really depends on the child's symptoms and age and it changes depending on what lyme specialists find works the best. That is why it is so important to see an ilads trained doctor who goes to the conferences and is up on all the latest thinking about lyme and other tick illnesses. Your average doctor has no time for this and often relies on outdated and inaccurate lyme info. If only my son had been properly diagnosed by my pediatrician he would not have had to go through the agony of this long term treatment. Thats why I urge anyone with a child with possible lyme symptoms to get on it immediately so you don't have to go through what we are going through.

 

Lyme Mom

[dut]

Lyme mom - not sure if this has been asked before but how do kids with lyme or co-infections respond to steroid use?

 

thanks...

[lyme_mom]

Lyme mom - not sure if this has been asked before but how do kids with lyme or co-infections respond to steroid use?

 

thanks...

 

Steroids can make matters worse with Lyme b/c it lowers your immune response and helps the lyme. It is contraindicated with Lyme Disease.

[dut]

thanks, lyme mom :-)

[lboll]

Hello all,

 

We have tried our son now on about 12 days of 1500 mg. of Augmentin. We have seen no changes for the positive. If anything, he has gotten worse; less sleep and getting up at 3 in the morning, loud, aggressive.

 

Has anyone else had this experience? I'm wondering if it's worth pursuing a higher dose? Or should we switch to Zith?

 

lboll

Iboll,

 

I hesitate to write but because I sound like a broken record, but you should know that exacerbations of symptoms while on antibiotics is common with Lyme Disease. It is considered a reaction by the body to the die off of the microorganism (b/c toxins are released when the spirochete is killed). Lyme specialists consider temporary worsening of symptoms after a medication change to be a good sign and they do not stop the antibiotics unless it keeps up for a long time. Has your son had a lyme test from Igenex Labs in California or been evaluated by a lyme-literate doctor (ilads-trained)? I would definitely do that b/c the sooner you know if lyme is involved, the better the outcome.

 

Lyme Mom

 

Hi Lyme Mom,

Please don't ever hesitate to reply to me. I need all the information I can get. Is Lyme disease something that could make someone ill like my son for many years? My son is autistic, diagnosed at age 5, but showed symptoms earlier. However, his autism is "atypical" according to the doctors, which is leading some of us to believe that PANDAS is involved. He tests positive for strep on the rapid strep test each time. Are Lyme and Strep closely related?

[Joan Pandas Mom]

Lyme mom, I noticed a particular lab in your reply. Isn't there a test that has a lot of false negatives too? I heard one test is more accurate than an other. Do you know the names?

[lyme_mom]

Lyme mom, I noticed a particular lab in your reply. Isn't there a test that has a lot of false negatives too? I heard one test is more accurate than an other. Do you know the names?

 

Joan,

 

You are right that there are a lot of false negatives for LD (not false positives as some would think). The best test for LD is the Igenex Western blot (igg as well as igm-test 188 and 189). It costs around 200 for both and your doctor must order it. There is a form on the Igenex website for ordering it. This test will show all known bands for LD including bands 31 and 34, which the other tests do not test for. Y

 

The makers of the other tests that most doctors use do not include bands 31 and 34 b/c the Lyme vaccine was to be based on these antibodies. However the vaccine was pulled off the market in 2001 and they never went back and added those bands to the lyme tests, which is not good for patients. A patient could be positive for bands 31 and 34 but get a negative result b/c the test isn't testing for those bands. There are other reasons why the test can be a false negative. A person who has had LD so long may no longer make antibodies to LD b/c they are so sick. This does not mean they do not have LD. The diagnosis is a clinical diagnosis and even the CDC website says that. Often they will treat someone with LD symptoms and then retest them and they will turn positive after a course of antibiotics. This is why it is so important to see a specialist who is ilads-trained (not necessarily an infectious disease specialist).

 

The CDC website says to start with an ELISA test (worst lyme test) and then go to a Western blot if that is positive. All I can say is that 40% of the patients at Dr. Charles Ray Jones' pediatric lyme practice in New Haven had negative ELISA tests but were sick with LD! So if you want to know and you want to catch it early do not rely on an ELISA or any other LD test that is not from IGENEX.

 

Dr. Jones also ran the following other tests for coinfections on my kids in addition to the Igenex Western blots: Specialty Labs' Bartonella Henselae Igg and igm abs, Igenex' babesia fish (rna) and babesia duncani antibody panel, mycoplasma Pneumoniae igg and igm, Human Granulocytic Ehrlichia HGE, and E chaffeenis-hme (monocytic) igg and igm. The presence of any of these other infections complicates the Lyme Disease treatment. Dr. Jones told me that Bartonella can cause ocd symptoms. My other lyme doctor told me that many of his patients with PANDAS also have LD.

 

If your doctor pushes back just tell him or her that any child with PANDAS symptoms certainly deserves a proper test for LD b/c the symptoms of PANDAS could also be lyme symptoms. The sooner it is treated the better the outcome for the child. Good luck! Go to Ilads.org for the best lyme info.

 

Lyme Mom

[ajcire]

Are the lyme tests you are talking about not usually covered by insurance? We had whatever the tests the dr.s normally run done but those came out neg. I see that means absolutely nothing though.