Off Antibiotics for co-infection testing

[SSS]

It is NOT good. Rage. Red hot anger. Anxiety is high, but she just started 1st grade. It is very hard right now.

 

We have been on Azithromycin (only) about 600-800 mg (mostly 800 mg) per week for 7 months. LLMD said to take her off (I pressed, said take her off) we go back in 13 days to LLMD, and they will pull the co-infection testing, although we were clinically dx'd with 2 co-infections, which are spot on, if you ask me. We start treatment plan then as well.

 

We are also off all supps except a yeast pill, probiotics, and mag citrate to keep her bowels moving, we are doing 2 urine tests this weekend.

 

I would love to put her back on Azith. after our urine tests this weekend.

 

Does it really affect the co-infection testing?

 

I feel like we are going down hill fast, home life is really suffering, and that the Azith. tamped down slightly all this anger.

 

Thank you.

[mama2alex]

I don't know the answer to your question about abx and testing, but wanted to suggest that you call the LLMD right away and let him know what's happening and how hard it is on all of you. I'm not sure if he's in today, but tell the office staff its urgent and they will give him the message as soon as he gets in. He may adjust his recommendations based on what she's going through.

 

Sorry things are so hard right now.

[LNN]

We only tested for bartonella with Specialty Labs. Didn't do the Igenex panel. But DS was on 2 abx at the time. I would call Igenex and ask. There's an ideal world and then there's raging kid reality. If Igenex says ok to be on abx, then I'd do an experiment. Add supplements back in after urine tests and see what happens for a few days. Then add abx back. See which makes a bigger difference.

 

One thing that worked for DS's rages was I would visualize the Tasmanian Devil (from Bugs Bunny) inside of him. When it came to a rage, I would remind myself DS was "possessed" and adjust my expectations accordingly. Obviously, safety of little sister first, then your safety and S's safety, then safety of belongings. Immeasurable patience. A punching bag or pillow to pummel. Then after the storm, a conversation about coping tools. CBT, ownership of emotions, etc. You know all this, I'm sure. But give me a shout if you need to vent.

[SSS]

Thank you-- I did call the Dr.'s office, they were great--- checked, said I could put her back on Azithromycin after our urine testing is complete this weekend--

LLM, I don't think it is the other supps- I actually don't give a lot of other supps--but I do worry I'm not giving her an excellent multi and extra C, back in the germ infested school.

 

Also, I've gone back to giving motrin 2x a day-

 

Hope the Azith. shows some improvement-

 

Thanks again :-)

[lfran]

So sorry. Which urine test? For the Lyme DOT Blot urine test, we were specifically supposed to be ON antibiotics.

 

There are some natural anti inflammatories -- turmeric and green tea supplements helped for a while.

 

It is NOT good. Rage. Red hot anger. Anxiety is high, but she just started 1st grade. It is very hard right now.

 

We have been on Azithromycin (only) about 600-800 mg (mostly 800 mg) per week for 7 months. LLMD said to take her off (I pressed, said take her off) we go back in 13 days to LLMD, and they will pull the co-infection testing, although we were clinically dx'd with 2 co-infections, which are spot on, if you ask me. We start treatment plan then as well.

 

We are also off all supps except a yeast pill, probiotics, and mag citrate to keep her bowels moving, we are doing 2 urine tests this weekend.

 

I would love to put her back on Azith. after our urine tests this weekend.

 

Does it really affect the co-infection testing?

 

I feel like we are going down hill fast, home life is really suffering, and that the Azith. tamped down slightly all this anger.

 

Thank you.

[SSS]

Hi, thanks for the reply-

 

It is not the dot test. We had only run the panel 6050 from Igenex on dd6, so we were going to do another draw at next appt. for co-infections w/Igenex, but I just remembered they keep the blood for a bit, so why didn't we think to just call them and have them run that sample for co-infections? I'll have to call Igenex on Monday.

 

The 2 urine tests are for a complete amino acid test, and an inflammation marker test. Doing those this weekend, back on supps and some Azith. Sunday after we are done pulling urine.

 

My own CD57 came back from Labcorp. Not good. 45. Yep, mama too. Still waiting for my own full Igenex tests, including co-infections. I am exhausted, and about tired of doing all the testing, we have spent quite a bit of money this summer on all kinds of tests. Now just want to go forward into treatment.

 

Thanks everyone.