Update - Dr J Clinic-remission info/follow up

Just thought I'd drop in and post a few items from DS's appointment with C - first time with her. She was extremely thorough in her explanations. We actually met Dr. J for a few minutes when he dropped in for the first time as he doesn't generally work with pediatrics. We're so grateful for this dr and his clinic!

DS has been treated there for almost 3 years after at least 1 year untreated/undiagnosed. He has been feeling really good since July 2017 and been in a sort of maintenance mode since last Nov. However he keeps getting myco, beats it back and then is reinfected especially in Sept when school starts.

Here are some takeaways (remember they're particular to his case, not everyone, but may be of interest to those treated there but not yet at remission to know what's at the "near" end ;)

Continual reinfection with myco even though he's with no symptoms means his immune system, while much stronger, is still not quite there. So we drop back to fewer weeks off for a few cycles and then bump up again to many more weeks off. Periodic blood work continues.

When I asked about future steps, they said - once a patient, always a patient (not sure if that's really who completes treatment and is in remission, always a patient). We can always call back if things regress too much after he's completely off abx in a few months and they'll reassess. Our last few appts are 6 months apart btw.

He is to ramp up detox whenever symptoms creep back in - and she said they will if he doesn't get good rest, good food and listen to his body. Detox she mentioned is sweating, healthy diet of protein, veggies and fruit, probiotics, good, regular rest. He already exercises/sweats a lot. If a few creep up and they don't resolve with detox, then he should call.

Babesia is the infection they most frequently see regression with after a patient is off abx. It causes the most trouble in their experience. Also stated that all infections and many viruses (EBV, herpes etc) are still in there, it's just that the immune system is repaired enough to keep them at bay as long as one takes care to not over do it and pull back right away.

Gallbladders - they are noticing/hearing about many younger patients needing to have the gallbladder removed due to babesia. She pointed out its location and asked about discomfort there-he hasn't had issues thankfully.

I think that's it.

Ah yes, the babesia protocol - he did it twice but luckily used malarone - I honestly don't think he would have ever taken mepron and would probably still have babesia today ;)

The testing for myco is pretty straightforward. They look at 2 things, past infection and current active infection. He has consistently had an issue in Sept because of the pack immunization nature of schools. Myco is considered a community acquired illness meaning I think that it's out there in the general population floating around especially in the fall months. I finally did some research because since he's without symptoms now that he's doing so much better I thought maybe they would just monitor it with bloodwork and make sure it didn't get out of control but they want to treat it some more for the time being.

Myco symptoms for him were some shortness of breath and fever (but that and joint pain, heart palps etc all of which he had as well are also symptoms of lyme etc). I think blood work is the most easiest way. He never had the sharp lung pain or hacking dry cough that are also symptoms.

Best wishes for your treatment. It can be super tough for awhile - hang in there.

Yancync - thank you for posting. That's great that your son is still doing well.


I've not been tested or treated for myco...unless it's covered in lyme and/or bart treatment.
What lab is used to test for myco? Igenex?
And at first was your son clinically diagnosed for myco with what symptoms he presented with?

Maybe because I never did have myco symptoms: sore throat , cough, headache...etc...

Interesting that when symptoms creep back...he's to detox. ...and doesn't have to go back on the abx. That's great.

Yancync,

question for ya... so why do you feel that your son would still have babesia if he took mepron instead of malerone??? just curious because i am on mepron but insurance only covered enough for 1 cycle and the rest of the time ill be on malerone....Thoughts?? Thanx!

ohhhh got ya lol i been taking it with no problem... maybe because im glad its not another pill!