Debating between two paths to take (switch to Dr. J in D.C.?)

Hi Dahlias,
DS goes to pediatric people at Dr. J's and it is true they don't test for co-infections because it's unreliable. DS had most of your symptoms and has at least 4 infections including Lyme and mycoplasma (confirmed by testing), babesia and bart. Many of the classic babesia and bart symptoms didn't even show up until after beginning treatment.

It seems to me that you have clinical symptoms of more than Lyme. I would be hesitant to stay with the current LLMD if that person only relies on test results because it's impossible with tests as they are now to figure out many of them. There are just too many individual strains of each. The fact that you are still taking a single antibiotic rather than a combo is not what the most up-to-date LLMDs practice now.

JC has a system and it works for many (this is not to say they don't tailor it to each patient because they definitely do work off your worst symptoms at each appointment, try new things if you haven't noticed improvement since the last appt etc), but pretty much everyone has to add in supplements, continue personal researching and run any new things you try by them at your appointment. If you aren't opposed to using antibiotics at least to get the infection loads down and your body can handle a variety of antibiotics pulsed it may be for you. I would definitely discuss your antibiotic issues and always be upfront about the other supplements you are taking. It also helps to be super organized and try and have all your questions written down when you go in so you don't forget to ask anything that's been on your mind.

Hope this helps.

Dahlias,

If distance is a concern, consider this.

Dr J's office does phone interviews. I am two hours away. My first appt was in office, as was my second. Then I had two appts that were phone. My last appt was in office as will be my next one. But each appt is spaced out about 3 months.

I find this approach to be so beneficial to me. I was originally seeing another dr 2 hours away in the other direction, but because my case got severe he referred me to dr J. For myself, the distance to travel was exhausting and set me back. I would plan to do nothing for days afterward. It really helps me that I don't have to travel for most appts now. The other dr I had an appt once a month and spent days each month recovering. Don't be alarmed by phone appts. Each one is so thorough. I cannot believe the quality of care I get with this practice!!! I see Kelly and I can tell you, she is on the ball with every little detail!! The stuff this girl knows, and how she applies it to my case is astonishing!!!

For myself, I can say, in fact I did say this to my husband last night, is that switching to dr J was the best thing I could have done for myself. His approach is working for me. I am not 100 percent by no means, but I have made great improvements, at least in the quality of my life. I feel like the NP I see there really listens to me at each appt. She reads her notes thoroughly before each appt, and I know this because she will repeat back and wants to discuss the most obscure things I filled out on the appt form without even referencing it at that moment. Each cycle of treatment is tailored to each patient and what is going on with the patient at the time.

I am sorry, I could write a book about all the positive things about this practice.

The only negative is that when you call, you will not get someone on the phone right away. It may take a day or so. But they have a huge patient load and do their best. I for one am grateful. It may take a few days to hear back, but the alternative is that they close their practice to new patients and that would be tragic for anyone who needs help. So I remind myself to be patient, remembering that I am not the only patient they have and it always works out. And when they are treating you, by phone or in office, it is as if you are their only patient...not rushed and very thorough!!

about the Igenex. I had the test done with my other dr. When he referred me on, he took me off meds because he said dr j would want to re do those igenex tests. But actually, they did not redo them. My symptoms and tick exposure was enough. I did have a positive band though. My test for babesia came up negative, but dr j said that is unreliable, and my symptoms scream severe babesia. So we treat it. I don't know if you have never had the igenex if they would want to do it. There was also a ton of tests they ran that my former dr did not. I also have blood work done once every three weeks to watch my labs. I did not have this with my last dr. This gives me a level of comfort I did not have before, in knowing that they keep a close watch on my organs and systems as I go through all this.

I think appts are a three month wait. Not sure. My dr referred me so I had an appt within two weeks. I actually was offered the next day, but because it was the evening before that appt there was no way I could get my sick self there so fast. And there was no way I would be able to get all my medical lab test records and the extensive forms they have you fill out done in time. So I opted to wait instead of stressing myself. If I were you and on the fence about switching, I would at least make a call and get an appt set up.

Good Luck with whatever you decide. Each and everyone of us is different and our needs are different. Give it some thought about what treatment plan you will be most comfortable with.

Oh jemsek protocol does use herbs also in conjunction with antibiotics. It is heavy antibiotics, but herbs are also used along side for killing bacteria and also supporting the body. Also, they are all about getting your immune system in good shape in addition to reducing the bacterial load. And they will help with that part too.

Thank you all for the responses! Yancync and joee, it's very helpful to hear your experiences. I was hoping to hear from patients there.

I'm very willing to do abx in theory, I'm just worried because of allergies and other past reactions. I seem to be very sensitive to medications in general. I'm relieved to tolerate doxy so well. And it has helped very quickly this week -- the scary new symptoms that I was developing last weekend have calmed back down noticeably, and I have new muscle aches that must be a herx.

Yancync, my current doctor wants to add another antibiotic or two depending on the test results. I'm the one who begged for doxy for now.

The Dude Abides, thank you, I've saved that information.

Girlie, I don't mind driving an hour and a half in general -- my commute can take that long anyway. Driving into D.C. is a very different story, though, and I almost never go because it's so daunting and stressful. But I can do it occasionally if my head is clear. Have to go this week to take my daughter to an event, and I'm dreading it.

Joee, they seem to have appointments with staff a couple weeks out, but they require a large deposit when you schedule your first appointment now. They must have had trouble with indecisive people.

Do people normally inform their doctor when they switch? That will be awkward.

Post Edited (Dahlias) : 9/23/2017 8:54:38 AM (GMT-6)

When you no longer schedule an appointment, your doctor will know you have moved on.

They generally do not call and ask why you aren't coming or how you are.

When I switched I did not want my first LLMD's notes swaying my new doctor. I wanted my doctor to look at me with a new set of eyes. So I never mentioned my first doctor's name. I did tell my second LLMD the meds that I had taken and what I thought I would like to try.