Dr. CR J in Connecticut Protocol

He mentioned during an interview that you can't "pulse" antibiotics for children. Does anyone know why? He also said he knows many doctors do this for adults, but that he does not treat adults and therefore can't speak on it.

He also said some kids (although rare) have taken up to 17 years to treat but they eventually get cured!!!

lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/straight-talk-with-pediatrician-dr-charles-ray-jones

Post Edited (Fronton) : 2/23/2017 1:12:36 PM (GMT-7)

Yup. I added the link to the interview above.

Yes it is a great read. I found it interesting that older kids are usually the ones with stubborn Lyme. Says more about the differing immune systems than strain variations.

One common thread is those who catch it quickly - will generally heal faster..

When it's gone years...it's longer treatment (generally).

1000Daisies said...
Great article. Thanks for sharing!

As for kids, I know that my oldest two kids are very difficult to treat. I do believe it's because they were born with this (eg that I gave it to them in utero and/or breastfeeding). And because of such, my theory is that being born with it, years of antibiotics, and/or genetics... contributed to a messed up immune system. Despite years of antibiotics, they were still very sick.
However, my youngest kid was the least sick, least treatment (arguably was undertreated by most standards), but is doing the best. I believe his immune system is more (genetically) functioning, hence he responded more positively/less sick.
I think my challenge is trying to figure out why my older two kids struggle so much in getting better. This is a major piece of the puzzle for them. I'm hoping, desperately, that an herbal approach can help address this. (And for those curious, they are MTHFR negative.)

It's a puzzle in our case, but that's my current thinking.

No problem.

Have your kids been tested for or treated for any and all of the coinfections?

That was an interesting article. Thanks for posting.

The DC Dr J's LLNP follows his pulsing protocol for adults. The idea is to allow/stimulate the immune system to recognize the infections and start dealing with them as well. It also seems to trick the bugs into coming out again rather than force them into hiding. That's what DS has experienced anyway. Earlier in their careers Dr. J in DC worked extensively with HIV (multiple infections/immune disfunction) while it sounded from the article that Dr. J in CT worked a lot with leukemia - and I imagine those experiences influence their thinking a great deal as well.

DS's immune system wasn't completely shot before starting treatment so I'm not sure IVIG would be right for him but I don't really understand how Dr J in CT decides to use it.

It seems Dr J in CT tends to treat the worst of the worst of kids and Dr. J in DC often sees really bad adult cases in DC. As will all things Lyme, different things seem to work for different people. Dr. J in DC is closer to us and parents told me their kids had improved with his protocol so that's DS's path for now. Plus with pulsing he has been able to stay in school more of the time and while on straight daily abx he was out of commission. However, 1.5 years into it - having only 3 months of treatment with Dr J in CT seems pretty nice!

No. I took my kids to Dr J in CT but my spouse and myself went to J clinic in DC. I had originally tried to get my kids into J Clinic but the appointments to be seen for all of us within same time frame was too long of a wait.

Anyhow, when Dr. J in CT saw my kids he asked about me and other adults in the family. I mentioned that we were being seen by the J clinic and he expressed his criticism regarding pulsing. Like I said, I'm not sure I really understand or inquired too much about the reason for his criticism, but he does not believe pulsing works. He's stated it a number of times to me. He also doesn't believe in biofilms and thinks it's a made-up reason to cover for treatment failures. He did mention that the worst thing you can do is to stop treatment prematurely because then the most difficult bacteria are left to thrive and grow resistance to the treatment. I believe this may have been the heart of his pulsing criticism, but again I'm not completely sure. I didn't really let it bother me. I'm not sure I'd give it much stock either way though.

Like I said, he's older and somewhat of a pioneer when it comes to lyme treatment but he might be traditional and set in his ways as well. He seemed to be a little bit of an egomaniac and so I'm sure there's some of that in there too.

So my kids are getting antibiotics everyday but my husband and I following the J clinic approach of pulsing. Whether or not, J clinic's protocol does provide some cross-protection, the clinic itself labels things in blocks. So first comes the lyme block, then comes babesia, etc.

Fronton, To be honest, I'm not sure, but we caught the Lyme pretty quickly and my symptoms though persistent were always pretty mild. Except for a period of about a 1 week or two where I had some serious anxiety and feeling unwell which occurred a month prior to my first visit with the J clinic, I've always remained functional and my symptoms were more of a nuisance than a hindrance in my life. I was more bothered by the fact that the symptoms were there suggesting an active infection rather the symptoms themselves being bothersome. By the time, I saw Dr. J I was already starting to feel better and even once I came home and ordered all my meds before starting my first cycle, I was feeling better. So yes, I'm feeling better but I'm not 100% sure it's not a function of time. I still believe lyme and co-infections are there because I will have symptoms especially during my on weeks. My old symptoms for before such as achy fingers/joints and cold feet and recurring pink eye seemed to have gone away but other symptoms have popped up like headache, neckache and tingling.

I'm not 100% sure about my husband...he complains about stuff but he complained before but we are both able to carry on with our lives.

I think the most obvious improvement has been with the children - namely the child with the anxiety, but also another child reported fewer headaches and stomach aches (I think it's anxiety related). The older child tested positive for mycoplasma pneumonaie as well as babesia and started with an unexplained cough shortly after starting treatment and it has also resolved. I too felt I've seen some behavioral improvement with my other chid.

Whether I know with certainty that the antibiotics are the ones doing the work, it doesn't matter. For me, so much of seeking this treatment was for the psychological benefit of knowing I was aggressive from the get-go and if I never get back to 100% and this is my normal so be it but at least I won't live with regret - particularly with reference to my children.