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

I hope so too Rikky! You two have certainly been through the wringer with these infections!

Looking forward to your impressions and his plan of action for each of you.

Thanks Girlie. He's got quite a few PA and NP so appointments are actually not that difficult to get. The next available one I called was this upcoming Monday. It worries me a bit that he's got a lot of assistants and how much can he really review but you have to trust the practice since he runs it. You can get an appt. with Dr. J. starting 2nd appt but I'm sure those are far less available.

Best of luck!

Girlie yes I heard the tough cases they do huddle just not sure how consistent this is. I know people who fly in from Australia to see him so he's got to be doing something right.

You can decide who you want to see for your second appointment. Same price so I think the issue is availability on his calendar.

Best of luck to you! I hope this will be the answer.

Rikky best of luck!

Rikky1

I also started with another dr and was getting worse not better. I bit the bullet and went to dr J also. (the dr j in the city of DC not the suburbs one) I had two appts so far. The first appt was with a physician asst and then dr j came in to see me and we discussed my situation. The next appt was with a nurse practitioner. (who I thought was very thorough and knowledgable) My upcoming appt is able to be done over the phone so I don't have to do the long drive at least for the next appt.

Wow, I am so glad I went there. The nurse practitioner I saw was a book of knowledge and I actually left the appt with a kick in my step full of hope. Not only are they doing an entirely different protocol but they have an entire slew of tricks/meds to help with pain and herxing. The PAs and nurse practitioners all work under dr j and he oversees the cases. If you want to see him after the first appt it isn't hard to make an appt with him. I am going to stay the course with the nurse practitioner because I think she was outstanding and she consults him anyway. (the price to see either is the same so it is just your preference) Her knowledge of every med was astounding. Even meds that aren't used for lyme but other diseases she was so ridiculously informed on all of them, not just what they are used for but how they actually work.

They do extensive testing beyond the igenex tests. I had the igenex test done at the previous dr so i didnt need to redo those. (bring your results with you if you have them) They also suggested I do the 23 & me test which is a genetic test.

I went there thinking I needed iv therapy and my first appt that was the direction we were all going but by the second appt things turned around and I was doing so much better we elected to do orals and evaluate in the future if my brain symptoms don't improve. (which btw...have since improved just by getting the toxins out of my body).

I really feel they will take each of your situations and design a treatment plan that fits your needs.

Dr j and his staff do pulsing. They believe that your immune system is what is going to get you well. They feel that if you continuously take antibiotics your immune system never needs to step up. When you stop antibiotics when you become symptom free, your immune system won't know how to take over and you will relapse. So, I pulse.
Meds taken: M/W/F for two weeks, then a week off. The second week I have a different med that I also take on Th/F. For me, the immediate relief is that I use those off days to help flush the toxins and this allows me to feel generally better while on treatment then I had when I took orals everyday....which left me week and just too ill to cope.

At my next appt we will begin to tackle babesia if I continue to do well. They do not want to overwhelm your body and start slowly and ramp up. 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.

My last dr felt I needed to just suck it up with how ill I was from herxing. This clinic says no way, if I am too sick to participate in my life then they need to hear about it.

I am so happy I go to this clinic now, as I actually don't walk around thinking I am going to die soon. I now have hope. They are big on managing pain you may be experiencing and also getting sleep if you have sleep problems. These were my two issues. I am sure others have things too that I am not aware of that they are sure they cover. Also, my tests revealed I was deficient in nutrients that I have never in my life been tested for. They immediately went over everything and gave me a supplement plan too, specific for me.

They will also spend time discussing ways to build your immune system. Which I found very helpful.

Good luck to you and your wife. I hope he works out for you like it seems to be working for me. I am only 8 weeks in (the first 4 weeks we did maintenance orals so I could detox the heavy load I was carrying) and I am starting my 4th week on the new protocol. I feel so much better.

If you have any questions don't hesitate to ask me. I have my email enabled so feel free to email me.

Oh heres a tip for the parking situation if you are driving in. The clinic suggests you park at the capitol parking garage. They give you the street intersection for the garage. We made the mistake of just typing in capitol parking into our navigation system. Every garage in the city is named capitol parking (very confusing). So it took us a very long walk to get to the clinic, and trust me when you are very sick that walk is brutal....it was uphill, raining, and darn cold. The second time we went we found the correct garage. It is right under the office. You don't even need to go outside. So make sure you double check which garage you are going to. We use an app now that pre books the garage parking space and we pre pay for it too.

Oh gosh one more thing....because someone mentioned you may want iv therapy. The first appt the iv infusion nurse will come in and talk with you. She is fantastic and goes over all of your options.

They got any and all paperwork I needed done very quickly. We asked for a letter of medical necessity for insurance and they got it back in one day.

The front desk staff is on the ball. I got a jury duty excusal letter done in one day too and she faxed it over for me also.

The nursing staff is also terrific! They promptly return phone calls and call my pharmacy so darn quick each time it was needed. And they are such caring, friendly, nice nurses!

Can't say enough good things about this clinic. Can you tell? haha

Thanks so much everyone for the feedback. Sounds like a great place I'm going to have fun challenging the knowledge of the NP I'm seeing with what I know ;o)

Girlie said...

mokeyho said...
I wonder if this is my Dr. J. He's not in DC, but in the suburban area of DC. I really like Dr. J and feel that he has saved me twice now.

Is it the well-known Dr. J.?


This one?

jemsekspecialty.com

I posted the website as he is open about treating lyme disease.
I still choose to say Dr. J. most of the time...just in case...lol.

It looks like it's a different Dr. J. I think the Dr. J I see is well-known, as well. Someone posted a link to his blog a week or two ago. He is also very open about treating Lyme and it's co-infections.

jennydancingfish said...
Monkeyho whaf does Dr j have u on and what symptoms have improved?

I just made a list of all my medications and have been tracking my symptoms. Most of my symptoms have improved, which are I can walk normal, night sweats are decreasing, weird feelings in leg have gone, I can take notes without mistakes, I am more clear headed and able to function well again at work, mood has improved and husband noticed I am more talkative and happy lately, no air hunger. In general felt very blue, short fused in November-January, but don't feel that way at this moment.

I credit the change to getting back on Mepron and also adding Bactrim in late-December January was very tough, I'm assuming due to herxing.

I currently on doxy, rifampin, mepron and bactrim:
Doxy one 100 mg capsule twice daily: 04/13/2016 to Present
Rifampin two 300 mg capsules per day: 04/13/2016 to Present
Mepron one tsp twice daily: 04/13/2016-06/13/2016; Restarted at 2 tsps twice daily: 12/20/2016 to present
Bactrim two tablets twice daily: 12/2016 to Present

I was on these two as well, but am no longer taking them:
Tindamax one 500 mg tab twice daily: 07/19/2016 to 12/20/2016 (replaced with Bactrim)
CLARITHROMYCIN one 500 mg tab twice daily: 04/13/2016-07/13/2016 (replace with Tindamax above)

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?