Behavior worsens...antibiotics?

[lyme_mom]

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.

 

 

Hi ajcire,

 

The best Lyme tesst (from Igenex or Clongen Labs) are not covered by insurance. You have to pay for it and then submit it yourself and see if they pay for it. If your child has symptoms that could be lyme a LD doctor might want to treat him even if he has a negative test just to see if it helps or provokes a die off reaction. Then you can retest and often the test will turn positive after treatment has begun. You would likely get an idea if you are going in the right direction within a month or so so its worth a try, especially if the symptoms are lyme-like.

 

Lyme Mom

[ajcire]

Ack, how do you know if it's lyme like versus pandas or is that basically what you mean? That if we are concerned about pandas we should be considering lyme? I mean I do live in a heavy tic area and we have taken tics off all my kids but ugh.. this is all confusing. If we see a pretty direct correlation with strep and symptoms does that mean enough to not think it's lyme?

 

 

 

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.

 

 

Hi ajcire,

 

The best Lyme tesst (from Igenex or Clongen Labs) are not covered by insurance. You have to pay for it and then submit it yourself and see if they pay for it. If your child has symptoms that could be lyme a LD doctor might want to treat him even if he has a negative test just to see if it helps or provokes a die off reaction. Then you can retest and often the test will turn positive after treatment has begun. You would likely get an idea if you are going in the right direction within a month or so so its worth a try, especially if the symptoms are lyme-like.

 

Lyme Mom

[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

 

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?

 

hi Iboll,

 

Sorry that I just noticed this message from you. It is easy to lose track on this site! Lyme and strep are both infections that can affect the brain and can cause almost any kind of psychological symptom as well as physical symptoms. It is quite common for someone to have it for years and not be diagnosed. As you know they don't really know what causes symptoms of autism but they believe it could be caused by any number of things and it is different for each child. For some heavy metal toxicity or exposure to high emfs could be a factor. In others it could be a latent infection, virus or gut issue that is affecting the brain, etc. The fact that your son reacted to the antibiotics in a negative way would make me think it was killing something. One of my holistic MDs told me that a lot of children with autism have Lyme Disease. Another holistic MD told me that a lot of kids with PANDAS also have LD. It is worth reading up on LD and getting your son tested by Igenex to see if he shows any exposure. Does he have any other physical symptoms that are on the list I posted? You can email me offline if you want and I will respond faster.

 

Lyme Mom

[lyme_mom]

Ack, how do you know if it's lyme like versus pandas or is that basically what you mean? That if we are concerned about pandas we should be considering lyme? I mean I do live in a heavy tic area and we have taken tics off all my kids but ugh.. this is all confusing. If we see a pretty direct correlation with strep and symptoms does that mean enough to not think it's lyme?

 

 

 

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.

 

 

Hi ajcire,

 

The best Lyme tesst (from Igenex or Clongen Labs) are not covered by insurance. You have to pay for it and then submit it yourself and see if they pay for it. If your child has symptoms that could be lyme a LD doctor might want to treat him even if he has a negative test just to see if it helps or provokes a die off reaction. Then you can retest and often the test will turn positive after treatment has begun. You would likely get an idea if you are going in the right direction within a month or so so its worth a try, especially if the symptoms are lyme-like.

 

Lyme Mom

ajcire,

 

That is what really makes this confusing. Its hard to know especially since the doctors who treat PANDAS are not necessarily knowledgeable about tick borne illnesses. I would go to a an ilads-trained lyme doctor to rule out lyme, not a doctor who doesn't treat LD everyday. There are tons of doctors out there who will tell you that there is no lyme but as a mother I would want to know what the doctors who see it everyday have to say. If LD is even a possibility I would test with Igenex b/c you don't want to look back in two years and say I should have asked that question earlier so that I could have started the right treatment sooner. LD is just so widespread and one of my doctors told me that a lot of his pandas patients have LD.I haven't read all your posts to know what symptoms your child has but you could look at the list that I posted from the ilads.org website and see how many your child may have that are also Lyme symptoms.

 

Lyme Mom