Kids LLMD Visit

So my kids went to Dr. J in CT. This was after I had seen Dr. J clinic in DC for myself. I had some reservations going in because I really liked the Dr. J clinic approach to pulsing antibiotics and not wasting a ton of time and resources testing. My PA at Dr. J clinic asked about my kids and she voluntarily said she would treat my older two kids but watch the younger two. She also said that although the pediatric NP at their clinic studied under Dr. J in CT, he does things differently in that he tests more but that my kids would be okay either way.

So I went to see Dr. J in CT and I have to say I was a little concerned by his age. Thankfully upon talking to him, I can see he is still with it. Sure enough, he was all about testing. Even though a number of my kids tested positive through Tabcorp, he still tested them thru Igenex because he said he could get more information from it. He was very thorough in his examination and picked up certain things on my older daughter like involuntary movements/balance problems and he thought she needs further treatment for Lyme. Sure enough, her initial lab results that have come in have revealed some autoimmune issues and troubling results. My second and third child have had some behavioral/psychiatric issues - one with extreme and sudden anxiety and the third child with quick to anger. He also seemed to find the same thing but he also felt that my third child appears tired/wilting through the appointment. He felt that my baby seemed fine which is reassuring because it was very hard to tell what was going on with her since she's not really verbal yet. He did want to wait until all the test results came in before starting treatment.

My second child the one with anxiety seemed to worsening with her anxiety and it started affecting her sleep and she wakes up every night multiple times a night because she scared. She's particularly anxious about swallowing things, choking and dying. She asks me multiple times a day if her heart is still beating. She is constantly worried that something is going to basically jump into her mouth like small toys and cause her to choke. Even when her anxiety first started about 2 months ago, she would still have periods in which she was her happy self. These days I have found her to be unhappy - she seems to just vacillate between scared/anxious to sad/mad/upset. So I called Dr. J and let him know and asks if he might consider treating her prior to all results coming in. She agreed and said her lab results seemed to support it, although I didn't see it the labwork I was able to see. She also had three horizontal scratch marks (looking like a cat scratch) on her belly the other day but it was gone by morning. Dr. J said the mark should stay for weeks, which I know is not what I have read here. He put her on Azithromycin, Mepron and Spectra. On one hand, I'm nervous to leave her untreated but on the other I'm nervous to do it without a positive result, but again I know a lot of people don't get anyhow.

Dr. J (ped) was unsolicited critical of Dr. J clinic in DC saying that pulsing antibiotics don't work for Lyme and he also doesn't agree with attacking Lyme and co-infections in blocks. He definitely is much more traditional in his approach. However, I did find comfort in the fact that he has treated so many kids (tens of thousands) over the years and many/most of them successfully. I saw photos and photos and recent christmas cards and notes from now young adults saying that Dr. J saved their lives and took them from nonverbal to human rights lawyers, so I'm hopeful.

I also really really really loved that he reassured me many many times that my kids (and their infections) are fix-abe. He said he needs the "appropriate" treatment but it's fix-able, which as a mom I so needed to hear from someone who has experience rather than some local doctor who reading the CDC guidelines that amoxicillin is a magic potion for Lyme.

Is the Mepron, Septra, Zith a good combo for bartonella?

Girlie, I believe Dr. J clinic in DC assumes everyone has the big 3 - lyme, bab, and bart and maybe adds in others if you have more specific symptoms, but they sort of treat you in blocks for the infection they believe is most prominent at the time. There may be some carry-over where the antibiotics might treat lyme as well but I believe the focus on the protocol changes and they sort of attack in cycles/blocks. That's what I heard from patients or theirs and the PA told me that after 3 cycles on the current antibiotic protocol, she'd probably push me through a co-infection protocol.

Dr. J (ped) told me that he thought I was wise to bring them in but he also said it would be refreshing to have them as part of his practice because many of his cases are more severe and despite the best treatment will have some residual damage, whereas he thought my kids would be "fixed" as he said.

Also, thanks for reaffirming my concerns for my girl. It's hard to know if I'm doing the right thing. I know I am but when I talk to people not knowing lyme, they want me to run to a child therapist. I'm not against therapy but I would like to address the root of the issue if it's due an infection.

Okay - so that protocol was from the Pediatric Dr.J, right?

If I had kids, I would go take my kids to him....honestly.

The bactrim can knock some of the bart back..while treating the Babs with the Mepron. I think it is a good protocol IMO.

Mepron and Rifampin aren't usually prescribed together. When I put them in the drug interaction checker I use, it comes up as Moderate - for Rifampin making the Mepron less effective.

I have seen several different protocols of patients being treated by THE Dr. J. and they aren't doing Rifampin and Mepron together.
I know you posted that THE Dr. J. treats all three B's at once (or did I not understand you right) - but I personally have seen some patient protocols where he does Bart and Babs separately - at least with the 'big guns'.
(I guess the Mepron could be on the opposite days, but then you aren't giving the body a break which is what the pulsing approach is supposed to do)

Thank you....that's very good advice.

As a side note, she's complained of foot/ankle pain the past two nights so i guess she's herx'ing a bit which is a good thing

Did you see rowingmoms last post on what would i have done

bluelyme said...
Did you see rowingmoms last post on what would i have done

No. I don't think so. Sorry.

Do you mean the one on "what would you do differently" where she responds that she wouldn't take two years of antibiotics and read Buhner's book right away?

I'm not sure how I feel about that because my kids and I still technically in the acute/early stages. Even Buhner's books recommend antibiotics (with herbs!) for the acute cases. I need to give the antibiotics a shot before moving on. The bigger problem with my kids on herbs is that I tried a tincture for them and they spit it out in utter and complete disgust. Most of my kids are too young to swallow capsules, so no way I will be able to get any herbs in them let alone the amount required by Buhner. Maybe the 8 year old but not the others.

Post Edited (lymebug) : 1/9/2017 3:04:49 PM (GMT-7)

Lymebug I think right now you are getting over reactive momma syndrome which is understandable but there is no need yet. Remember that dr j in ct deals only with children and teenagers so when he doesn't recommend pulsing he is thinking from a child only perspective. Whereas dr j in dc is a largely a adults llmd so his pulsing protocol he has largely tested on adults and speaks from that experience. I would honestly suggest staying with dr j from ct he has more experience with CHILDREN than anyone else in the world including dc dr j.

Good luck lymebug! Keep us posted you guys are all fixable don't forget ❤️😘