Finally bit the bullet going to see Dr. J in DC

dannycoho said...
Can someone please send me an email with this Dr. J's information?

I posted a link to his website in a previous post

Krimpet 🍔 said...

njfillet said...
Just about everything joee stated is exactly how I came away from my first appointment there. I also just bit the bullet and decided to go there since it's within driving distance (long) and the approach is on the whole person rather than just feeding you antibiotics. I am so glad I made the decision. I felt the PA was extremely knowledgeable - about meds, pain, neuropathy, different syndromes the infections cause, etc... I am maintaining my current rx of doxy (250mg/day) while I get stabilized...that means focus on sleep and clear the diet while starting a detox plan. The emphasis is on deep sleep, and they prescribe the appropriate meds to get you there. Everything is addressed here, no stone unturned, and I finally feel like I have a "program". I was concerned about taking new meds to address the neuro issues and sleep, but they aren't just putting you on something without reason, and try to really concentrate on stabilizing your position before barraging you with a bunch of abx your body can't handle. I also appreciate that they are with you all the way through, so they will guide you to gradually eliminating meds when ready (plus anything else you may previously have been taking, even if prescribed by another Dr.).

Overall, you can't lose. You know the cost going in, and it's worth every penny.

1) Do they mainly focus on meds or is it a mix of herbs and meds?
2) Is it $1,000 an appt and how often are your appointments?
3) How long have you been going there?

My take is, (after one appointment):
1) It is definitely a mix of herbs and meds, probiotics, as well as pharmaceutical grade supplements and other vitamins/minerals. Each person will end up with their own recommendations. I was given the option to first try a recommended herbal for sleep, then move to the med if necessary. Also, the detox regimen includes some of the familiar herbs I've seen discussed/mentioned in this forum. Finally, they really recommend a gluten free diet to aid in the detox, as well as other common methods.

2) For the sake of confidentiality (prices aren't published but can easily be learned by calling), I'll say it is more than $500 but less than $1,000 for the first 3-hour appointment. In some cases, the second appointment would be in four weeks, and would be less than half the cost of the first, and I believe it's a 90 minute appointment. In my case, I have the option to have a phone consult in four weeks, but I'm going to the physical appointment. If you have insurance, everything except for the visit fee will be through your insurance, including labs, imaging, meds, etc., but outside of the clinic.

3) I only had my first visit last week, but with respect to cost - before making my first appt. I was given all of the info up front with respect to frequency, timing and cost of subsequent appointments.

NJ...thanks so much for the responses. That's great! I like the sound of this. I've already spent a boatload of money but if things don't turnaround I may find myself there too. I may give them a call nevertheless just to get some information based on what I've already done.

Hi Rikky,
I'm glad you made your decision and you and your wife have appointments. Joee gives a great overview of how the office works. It is true they focus on quality of life first and foremost since it's a long slog to get better. I'd say sleep is number 1 on their list but of course they have you tell them each time what your top 3 issues are so they can help you find relief.

We've been very happy and always see a practitioner and she always consults with Dr. J while we are there. It's a well-oiled machine for the most part and we see many patients that say they started last year in a wheelchair and are now walking etc. Hopefully you both will find relief!

Awesome progress and awesome sharing of information. Looking forwards to hearing back that you and your wife are making good progress as a consequence of the shift.

joee said...
However, the clinic asks that you not share specific treatment plans over the internet because each case is different and they don't want anyone to feel they aren't getting the right treatment if it isn't what someone is getting which is designed for their specific case so I won't share what meds I am now taking but just that it is pulsed.

First of all, I think it's wonderful that you found a place that you are comfortable with and is able to help you. I'm very happy for you.

Second, I find it really odd that ANY clinic asks a person to not share specific treatment plans over the internet.
Fortunately, I have never been told this by any practitioner. There is a lot to be gained from sharing, communicating, and working together. Of course, it's up to individuals to decide what they feel comfortable sharing, but I find it really odd that a well known and respectable clinic is telling people to not share treatment plans over the internet.

I don't go to this clinic. But I'm grateful that you shared your experience to help others.

1000Daisies, I understand where you are coming from - I had to wrap my head around sending DS to a guy who lost his medical license! But now that we are there over 1 year, I agree with what Joee says for a couple of reasons. I will explain here for others who may be trying to decide what they want to do.

The main reasons are: 1) Because they definitely look at the overall symptoms and zero in depending on what the patient is dealing with and 2) given Dr. J's previous difficulties with his medical license/insurance co's, it is something that I think most of us want to respect out of wanting to protect him from undue attention.

Everyone has a different set of infections and symptoms and what DS takes is completely different than what others may take plus his dosages are different given his size/age/condition. They have tailored his meds even further because of certain reactions he's had and that some abx work better on 2 infections so we can cut out an extra abx by using another one that covers more of his infections. While they may use a doxy combo for some patients, for him they've changed it because of his herxing. They give some folks mepron and others malarone - it just depends on various factors. Everything is fine-tuned and changes at new appointments based on what's the latest that's going on with the patient. I feel comfortable saying that they use all the abx one would expect given what we read on this board and in the research we do and they also keep up with the latest research.

Hope this adds to the discussion.