Gave up on new lyme test :(

[momcap]

We had DS8 off antibiotics for 2 weeks, hoping to do the new borellia blood culture test after 4 weeks. Sadly, we didn't make it. It was a complete nightmare. We took him off on a wednesday. The very next day I got a note home from school about his aggressive behaviour. The day after that I had a phone call from the principal saying, "Has something happened? He's not okay." Well, we stuck it out for 2 weeks, during which time he became incredibly focused on his old obsessions and compulsions, germaphobia ramped up, we saw a return of ODD and aggression. He even became paranoid and violent. It was terrifying and I started having flashbacks of what life was like before we started lyme treatment 6 months ago. At the end of 2 weeks I couldn't let him out of my sight, for fear of what he might do. It was not a difficult decision to put him back on antibiotics. ON Wednesday he started back onto amoxicillin. I weaned him back up to his full dose (3000 mg/day) over 3 days. Yesterday and today he's back! He's calm, happy, helpful. He's not the same kid. It's freaking me out. Lyme wouldn't respond this quickly, and we haven't even added back his lyme abx yet, just amoxicillin. Is this bart (which we believe he also has)? Is it PANDAS/strep (He still has elevated ASO, although it is finally dropping after 2.5 years)? Could it be something else? I really wanted to do more testing this month, to get a better picture of what we're dealing with, and to get my PCP back on board with what we are doing. Maybe there are still some tests we can do with him on antibiotics. I just don't know what to test for. Any ideas on what this could be?

[MichaelTampa]

Bartonella can come back that quick. Some do attribute bartonella to many of the difficult psychiatric symptoms of lyme. As you say, borrelia ("lyme") does not. Whether it's a PANDAS type reaction, I'll leave that question to those more expert on that topic.

 

Maybe you could try a bartonella herbal, such as Byron White's A-BART, as a substitute for the abx, if you're looking for a borrelia culture. Second thought, that would probably kill some borrelia too. Even though they have a borrelia oriented herbal as well, these poor herbs don't always know what we want them to kill. Still, perhaps, something to consider, depending on how important that new borrelia test was to you (I don't know why that was).

[SSS]

Momcap, we went through the exact same thing.

Personally, my own conclusion, I am no longer comfortable, nor was I ever anyway, doing a pulse type of thing

(us) in the first year of Lyme treatment.

[momcap]

Bartonella can come back that quick. Some do attribute bartonella to many of the difficult psychiatric symptoms of lyme. As you say, borrelia ("lyme") does not. Whether it's a PANDAS type reaction, I'll leave that question to those more expert on that topic.

 

Maybe you could try a bartonella herbal, such as Byron White's A-BART, as a substitute for the abx, if you're looking for a borrelia culture. Second thought, that would probably kill some borrelia too. Even though they have a borrelia oriented herbal as well, these poor herbs don't always know what we want them to kill. Still, perhaps, something to consider, depending on how important that new borrelia test was to you (I don't know why that was).

 

The new test was important to me, because I wanted proof for my PCP. He was supportive for the first 6 months of treatment, based on symptoms and positive Igenex WB. But now that our LLMD wants to add some heavier abx, he's suddenly freaking out and questioning everything. And some of his questions had me freaking out too. He wondered how the kids could still have lyme after 6 months. I gave him some literature, but wanted a positive test to prove what I'm saying, and to hopefully win his support back. That, and I wanted the test for my own peace of mind - just to know for sure that we are doing the right thing with this aggressive treatment. But after 2 weeks off antibiotics I now have no doubt we don't have another choice right now. We HAVE to treat this, whatever it is, or I will lose my son. I'm not at the point of switching to herbals (yet). He's seeing an integrative LLMD/ND, and has lots of herbal support, but given his amazing positive response to antibiotics, I think we need to continue on this route until it's no longer an option, or he is well. There is NO way I"m taking him off antibiotics again in the near future. That was a nightmare!!! I will, however, keep A-BART in the back of my mind, and will discuss with our LLMD if this might be useful in a combo approach. Thanks for the suggestion!

[lfran]

Igenex's Lyme DOT BLOT urine test is usually done while on antibiotics. My son was on abx for 3 weeks when he took the DOT Blot test. They recommend 3 samples, but we only managed two -- one on the last day of abx and one two days after the last day. The former one came back positive, which was sufficient. It is one of their less expensive tests, although it only catches about 30% of positives, is what I was told.

 

We had DS8 off antibiotics for 2 weeks, hoping to do the new borellia blood culture test after 4 weeks. Sadly, we didn't make it. It was a complete nightmare. We took him off on a wednesday. The very next day I got a note home from school about his aggressive behaviour. The day after that I had a phone call from the principal saying, "Has something happened? He's not okay." Well, we stuck it out for 2 weeks, during which time he became incredibly focused on his old obsessions and compulsions, germaphobia ramped up, we saw a return of ODD and aggression. He even became paranoid and violent. It was terrifying and I started having flashbacks of what life was like before we started lyme treatment 6 months ago. At the end of 2 weeks I couldn't let him out of my sight, for fear of what he might do. It was not a difficult decision to put him back on antibiotics. ON Wednesday he started back onto amoxicillin. I weaned him back up to his full dose (3000 mg/day) over 3 days. Yesterday and today he's back! He's calm, happy, helpful. He's not the same kid. It's freaking me out. Lyme wouldn't respond this quickly, and we haven't even added back his lyme abx yet, just amoxicillin. Is this bart (which we believe he also has)? Is it PANDAS/strep (He still has elevated ASO, although it is finally dropping after 2.5 years)? Could it be something else? I really wanted to do more testing this month, to get a better picture of what we're dealing with, and to get my PCP back on board with what we are doing. Maybe there are still some tests we can do with him on antibiotics. I just don't know what to test for. Any ideas on what this could be?