Anyone with experience with C , in pediatrics, at Dr. J's clinic in DC?

how horrible i so feel for your daughter and your family i never considered ending my life until i got this horrible disease so i can really understand what she's going through.

i believe there are some prior threads on this new person that joined Dr. J's practice. i think the feedback was positive. you can look for it in the search tab.

i can tell you Dr. J's clinic will work with you for however long is necessary. they take a long term view and are patient/intentional in their treatment (marathon not sprint). you are paying for the "clinic" and their pedigree not just the doctor in question. i would trust them as i go there as well for the past year. i'm not making the progress i want but they say to trust the process and considering i've failed with a few prior LLMD's i'm going with it.

pray tell how long did your daughter treat and what meds was she taking?

quite a few LLMD's will put you on a maintenance protocol even though you're symptom free because they know these little buggers don't necessarily stay down for good.

Thank you both for your reply.

Rikky1 - Honestly, I don't remember all my daughter took. Mincocycline, Mepron, Wechol, Rifampin to name a few. I didn't do that best record keeping - 4 of us were being treated at the same time over about a year. Our Naturopath was and has been a savior for our family.

Yanycnc - I check out your website. Wow! Impressive labor of love. Thank you for putting making it available to Lyme families.

Also, Yanycnc - Thank you for the info on the peds at JC. We live up north so the Skype option is very helpful. So glad to hear your DS is doing so well.

Warmly -

Peppermint Tea

Thank you, JoeNova, for your input. I appreciate your adding in what lab was used, also. Are you happy with your current provider for treatment?

PeppermintTea said...
Thank you, JoeNova, for your input. I appreciate your adding in what lab was used, also. Are you happy with your current provider for treatment?

Yes Dr K in Dc

Girlie said...

Lab for what testing? Are you talking about a WB for lyme? They used LabCorp?

Yes

the lab requisition they give you can be taken to quest or labcorp its up to you and that is usually based on your insurance. both labs have their info on their req form. i've been getting 6 months standing lab requisitions for Quest for the past year from Dr. J.

Rikky1 said...
the lab requisition they give you can be taken to quest or labcorp its up to you and that is usually based on your insurance. both labs have their info on their req form. i've been getting 6 months standing lab requisitions for Quest for the past year from Dr. J.

But the OP was talking about a WB test...and we know Quest and Labcorp aren't where we want to do that testing.

I think I can clarify some points made above.

First, JC is very competent but a goal is to help as many patients as possible. Thus, they are not generally warm and fuzzy although I hear Dr. J is super compassionate. They do have a standard of treating the Bs - borrellia, bart and babs but they also look for other infections as well - a few are easily tested. See below for addl infections and testing info. If you are a person that needs that or you think your child needs that - you may want to reconsider.

As far as the intake, I agree they could do it online but I think they use it so they can expand or notice if a patient hesitates in an answer etc. For every appt after that first one, we download a document that asks for the top 3 concerns, any changes etc and all drugs and supplements being taken and when, how much etc. This is uploaded to their portal before you come in for the next appointment. It is then reviewed.

This is what we do for labs at JC and I believe it is what they use for most testing.

First - we had +++CDC lyme from LabCorp for DS before we set foot in JC for both blot and Elisa. They said they do not bother to test for most diseases because most testing is super inaccurate. They use LapCorp or Quest (depends on what your insurance prefers so find that out before you go in) to test for things like mycoplasma or EBV exposure - testing that's more reliable. They did not test for bart or babs because that is not reliable. I'm not sure if they ever want testing done at Ignex or not but we have never been asked to consider it there. The LYme, bart and babs is done clinically there not through testing.

After every change in medications at an appointment, you use LabCorp or Quest to have your CBC and liver enzymes, myco numbers etc checked. They have quite a few tests listed on their forms but none really for many tick diseases - mostly metabolic etc. I remember DS had 7 vials drawn for the initial labs but usually has 2 done now. They try to get a general overview of possible vitamin deficiencies etc at the beginning, always monitor liver/kidney after that and some easy to monitor infections like Myco.

Hope this helps.

Neither but thanks! I think for all the money patients have to spend and questions that new patients have - it's important to answer whatever I can.

So, I'll throw this in for others - the first appt is the most costly, #2 is a bit less and then #3rd and on is less and fixed (until they next raise prices). Parking is $21 at the building and oral antibiotics are usually covered by insurance. JC will work to prescribe the antimalerials/antibiotics that are preferred (price-wise) by your insurance. We use Costco and the pharmacists are great about checking/comparing prices. GoodRx can be useful as well to figure out the cheapest pricing in your area.

A few more thoughts on Dr. J Clinic. There's a doctor there who if you have 23andMe genetic data will interpret it for you and give you a customized supplementation plan. Supposed to take 2 weeks to turn around but it's been almost a month for me and no word even though I've called to inquire on status.

Their 'administration' is woefully lacking which means you aren't going to get that hand holding and close collaboration with your practitioner. If you have issues you call the triage line and usually someone gets back to you within 2-3 days but depending on issue they could get back to you same day.

If you want to talk to your practitioner good luck with that as they typically put someone in between you and your doctor to answer any questions so if you have a few back and forths it could take a while.

Dr. Jemsek is compassionate I see him personally which is next to impossible given how many folks the clinic treats and the difficult cases. Him and Dr. Horowitz go back and forth on who's doing the latest protocols. He does know almost all of the high profile LLMD's out there.

Everything yancync said is 100% accurate.

I have to respectfully disagree with the warm and fuzzies comment about dr j clinic.

I actually feel tons of warm and fuzzies. I also feel like I am "heard" which is huge for a patient(s) who have been to many drs only to be not believed or rushed or just told it is anxiety. Each appt she listens to my concerns and addresses them.

Also, I have a hard time following the appt with all the brain crap going on. My husband goes with me to each appt and I feel he is given so much respect to the fact that he is my main caregiver and the appt includes both of us in the conversation about what is going on and how to proceed, all the while protecting my dignity and not treating me like I am an invalid in some way. In many appts with specialists in the past through all of my years of illness, my husband was always treated as invisible or with hostility if he ever even opened his mouth. To me, this is huge that this practice listens to him, his concerns (which are valid) and includes him in the conversation and treatment plan. I am so fortunate to have him, and how much he does for me, and all his support that I feel it is important that he have a voice in all of this.

I get overwhelmed by this disease, like all lymies I am sure. But when I go to my appt or do the phone consult, I feel so heard and confident that this dr knows what she is doing, and that all my concerns are addressed that I get a sense of calm again. Until it builds back up over time and then the next appt rolls around and again and then again I feel like I can do this.

But, I am an adult and not a pediatric patient, so my comment may not apply to the pediatric practitioner there.

My first appt with that clinic was with someone who I felt hostility from. Then dr j came in and all felt right. My next appt was with her but then she left the practice (thankfully) and I got hooked up with KL and I couldn't be happier or feel more confident in the care I get.

In addition, the support staff, the front desk, and the nurses and techs....I spend time chatting with each of them at each appt and I cannot say enough about how kind and caring they all are.

I felt warm and fuzzy in the office. It was afterward that I felt alone. (Couldn't get through even from ER.)

That's great joee! We always feel respected and they are all willing to go ask others there for their input - so humble and knowledgeable at the same time. I loved K too the time we saw her and I may start requesting her again.

I have a feeling they are quite compassionate with the little ones. I have a teen son and TF, the former ped person, was very matter-of-fact with him but very thorough- exactly what a teen boy who doesn't even want to be there in the first place - wants. It was great for him and she was probably different with other patients - depending on age.

Thanks Rikki1 for confirming my info as it's always good to have verification for those inquiring about various drs.

I confirm that it can be hard sometimes to get a reply - I have called the front desk too and asked if they got my message - if you don't hear back in 2-3 days, call the front desk. From the ER, I'm not sure what you can do! This is the dilemma because going to the ER and saying Lyme is the worst. Google was our friend in those situations - which seems crazy but is what it is.

Just so grateful for the saint, literal saint, that Dr. J is and those that work with him. And I haven't even met the guy - just heard his voice! His professional and personal stories are very compelling.