UPDATE on my kids' interesting test results and Dr. J follow-up

If you have been following, last month I took myself and my kids to see Lyme specialist. I had gone to J clinic in DC and the PA who saw me noted that Dr. J (Ped Lyme) had trained their ped person but he does things a bit differently - specifically he does more testing whereas they did virtually none on me. Sure enough, he sent my kids for a bunch of bloodwork but wanted to wait until test results before deciding on treatment plan.

In the interim, one of my kids (5 years old) had extreme sudden onset anxiety that I suspected was attributed to Bartonella and it was getting worse, so I called Dr. J (ped lyme) and let him know and he sent her Mepron, Zith, and Bactrim. I had asked about her protocol here and some pointed out that Mepron is usually used for Babesia , not Bartonella and that Bart usually requires Rifampin or other in that class. Girlie also pointed that Mepron and Rifampin are usually not taken together so perhaps Dr. J (Ped lyme guy) was going to add in Rifampin later. So I did question Dr. J about this and Girlie was right that Rifampin and Mepron cannot be used together. Dr. J (ped lyme) said that Zith + Bactrim are a good combo for Bart and doesn't give the same psychiatric symptoms/side effects that some other Bart protocols can which is especially a concern since my girl's symptoms are mostly psychiatric.

Anyhow, he went over their testing and I guess I'll start with the 5 year old, which surprised me a bit, she came back positive for Babesia Duncan and Relapsing Fever, but came back negative for Bartonella. He said that Babesia and Relapsing Fever can caused psychiatric symptoms similar to Bart but also he felt that the current medical treatment had her covered for Bart anyhow. She's never even had a fever so interested about relapsing fever. Her Igeneix came back indeterminate for 34IGG, but she had previously had a positive through Labcorp.

My son, 3 years old, who I felt was a bit whinier and quicker to anger/frustration than before came back positive for Bartonella, Babesia and Lyme. My son got two negatives from labcorp but his first test showing lyme-specific antibodies andI did find the most ticks on him than the others. He also had the most physical illness symptoms but he's also always been my sickly kid with asthma, recurrent ear infections, and croup even before Lyme. I'm pretty shocked he came back positive for Bart but my others didn't although I suspected my previously super gentle boy had grown a bit more aggressive, but I actually felt it had improved without treatment. Anyhow, he's on a similar protocol as the 5 year old with Mepron, Zith and Bactrim.

My 8 year old who previously had a positive for lyme from Labcorp and confirmed tick bites came back positive for Babesia Microti/Duncani, but no Bartonella. She has been mostly well but she has complained of some headaches, stomach aches, and some sore throats which is not entirely new but seemingly more frequent since tick exposure. She's had one really uncharacteristic rage episode and another really uncharacteristic anxiety episode, but then again she's in a third grade which is a really stressful year in general. He thought most impressive thing about her was being positive for Mycoplasma Pneumonae. I thought that was weird bc I also had that come back positive but he seemed to think it just meant you had a bad cold in your life, but he felt that it's the most prevalent but most difficult to eradicate. I'm a bit confused why he thought it was impressive in her but just not significant for me.
She's taking Biaxin and Mepron.

I'm totally shocked that any of them, let alone, all 3 of them came back positive for Babesia. I really didn't suspect it. I have noticed any heavy breathing (maybe they get breathy in the middle night), no heavy night sweats (a bit of moisture on their hair). I'm a bit shocked that my anxiety girl did not come back with Bartonella. She even had the cat scratch too.

He said my baby was fine, but I'm not sure how much speciality testing she had done - whereas older kids had blood work sent to galaxy etc.

Overall, I feel pretty confident about Dr. J - his knowledge and his methods - at least for kids. He seems to really have a good handle on what to look for and different treatment options and their side effects.

He said plan on 3 months at least - maybe longer - that the worst thing you can do is stop treatment prematurely because it leaves the most resilient bacteria has a chance to mutate into resistant strains, which is also why he's so against pulsing.

So far my kids have been tolerating antibiotics okay.

Dr. J in DC does pulse his abx. I think I heard one protocol being combo abx M,W,F with Tinidazole Th,F and a break over the weekend with 1 week off and that grows over time.

Do Dr. J (ped) is very against it but Dr. J clinic isn't? You'd think overall there would be a closer consensus on such stuff.

I know of one person who did the M/W/F - 3 abx and Th/F a fourth abx.
This was two weeks on, and one week off.

Then after several months...it changed to two weeks on and two weeks off....

Then two weeks on and three weeks off.


At some point it goes to one week on...several weeks off.


...then it was only three days a month of abx.

I think there was a relapse....but not a 'big' one...some minor symptoms...so is back on - I think only 1 week on and two weeks off....then weaning slowly again.


Apparently this is not uncommon...the time off greatly increases over time.

This happens with non-pulsing regimens , too, though. (relapse)

So, Dr. J in CT seems to have good success with his testing.


You must be tired just typing all that out and differentiating between the two Dr. J.'s !!!!


My heart goes out to you - with your whole family treating lyme...

I think your kids are in good hands. My guess is that dr jo has found his own way of treating that finds success so he feels wary of other ways. It is unlikely he would switch up his treating style so close to retirement. It sounds like your family is getting great care and thank you so much for telling us about the Zithromax and bactrim combo being better with causing psych symptoms than other drugs that is super helpful for me as my main symptoms are gi and depression and anxiety thanks girl ❤

Just goes to show how unique each of these LLMD's are. My first LLMD who was some big wig recommended by Dr. G in Berkeley spent almost a year treating my lyme but mostly babesia with all sorts of anti-malarials. The only abx's I tried were Omnicef, Zithromax and Tinidazole. Omnicef he uses and has had good success against lyme but apparently it doesn't work very well against slow growing organisms like Lyme yet many LLMD's use cephalosporins against it. Zithromax to me is a waste of an abx its fairly weak esp the oral version so I got nowhere with my Lyme on those 2 until I switched up the abx combos last year.

If I was starting out again (and could handle the herx) I would do what Dr. J in DC does 3 abx (Minocycline, Bactrim, Rifampin or Rifabutin) on one pulsing cycle, Tinidazole, Mepron or Malarone 2-3 days a week. This is a full spectrum coverage and hits all the co-infections.

Now i have to get my medical license ;)

So mycoplasma p. is easily tested by Quest/Lab Corp and I think is pretty accurate. It is "walking pneumonia" and DS's numbers were over 2K for the 2 categories they test. One number shows old infection and one number shows current infection. Quest numbers are probably different and I think the next time we have to use Quest with our new insurance so I guess I'll find out.

Anyway, it's my understanding that he is taking mino for this infection and it also helps with others like Lyme. Because his numbers were so high in the active infection category they asked him to take it daily even in the "off" weeks with the other abx last winter/spring. However, that is when he was herxing too badly and missing so much school that they said to cut it back to MWF and he did herx less frequently (as in not all the time just several days a week).

Then he was doing so well over the summer they said to cut it out those 2 weeks but after 2 cycles and winter's long dark days, he was getting more sick again so we are adding it back in on the off weeks for MWF. His breathing was better (using inhaler less) but then it got worse just as his myco # went back up in late Dec. His LLNP said it's possible he was reinfected because it's very common in schools/hospitals etc. It just hits him harder since he has other infections too. I'm not sure if the herxing was Lyme or myco though.

If your kids are mostly asymptomatic then treating extensively and for all the negative tests may not be necessary. Treating for the positive ones seems most important because the body may be able to take care of the others on it's own if they aren't entrenched and late stage which it sounds like they aren't.

Hope this answers your questions, if not let me know and I'll give another shot at it!