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Visit with Dr. J's office in Washington DC

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Posted 9/7/2014 5:36 PM (GMT 0)
We just returned from our trip to Washington, DC. We met with one of Dr. J's associates (we knew that in advance), and she did a comprehensive work-up on Nick. I had spent the better part of 2 days completing the "patient history" files online before we headed up, so she already knew a lot about what we'd been through, and had apparently already reviewed some of that with Dr. J.

Because of the extensive labwork which had already been done on Nick, and largely because of the positive PCR tests for Lyme and Rickettsia, she did not order any additional tests from IGeneX.
Nick will be starting on two prescription antibiotics, as well as a homeopathic antibiotic treatment which is used in Europe to treat Staph and other "resistant" infections.

Nick will be on this regiment for about 2 months, and we will do some additional bloodwork at the 4 week mark, with a follow-up phone consult two weeks after he completes the course of treatment.
Because Nick is so young (5 yrs), she believes he has a very good chance of fighting this off with the help of this treatment and going on to live a symptom-free life once this is all said and done.

BTW, it was about $400 for the consult (adult consult is around $700 i think), and we are hoping that insurance will cover the antibiotics. We'll have to buck-up for the homeopathic stuff, as well as for some of the supplements we discussed, so I'm guessing this course of treatment, the visit, the trip to DC, etc. is going to end up costing about $2,000 out of pocket. Considering that I've already spent about $5,000 out of pocket in the last 3 months going to all the "conventional" doctors, worth every penny in my mind. I wanted to throw that out there just in case anyone is considering this.

We'll keep you updated.
Posted 9/7/2014 6:40 PM (GMT 0)
Thank you for the update! I hope your son heals fast. That definitely is more affordable then what I thought!
Posted 9/7/2014 6:49 PM (GMT 0)
What is the name of the homeopathic antibiotic? Can anyone get if or just available from dr j? Hope your son has full recovery
Posted 9/7/2014 7:04 PM (GMT 0)
PFB, I have some questions. Were you happy with the associate? Will you eventually get to see Dr. J. himself? Did he give you a list of supplements?

Thanks, Margaret
Posted 9/7/2014 7:06 PM (GMT 0)
I hope he will respond well to the treatments and improve a lot from them. Keep us posted.
Posted 9/7/2014 9:49 PM (GMT 0)
In terms of the associate at Dr. J's, (I forget the rules about posting names, so I'll err on the side of caution...you'll figure it out when you talk to them) we saw T.F., she is a fairly young CPNP, she was GREAT with Nick, and we were extremely comfortable with her, and confident in her abilities and knowledge of the Lyme protocols. She seemed to have spent quite a bit of time reviewing all the documents/info I had submitted online before we came up, and I believed she had discussed Nick in advance with Dr. J. She assured us that she would brief Dr. J on Nick's case, and contact us if he recommended any changes/additions to the course of care.

She has put Nick on Omnicet and Sephla SS (prescriptions), and ENULA (Microbial Defense) which is available at Bionatus Labs and I think at Amazon as well. She also recommended Garden of Life Primal Defense Ultra Probiotic and/or the VSC #3 Probiotic we are currently on.

I think there are more recommendations, but I'm just decompressing from the whirlwind 1500 miles in 3 days, so I'll be going through everything again tomorrow more carefully.
Posted 9/7/2014 10:06 PM (GMT 0)
Congratulations on such a productive appt and on getting confirmation that Nick will likely heal well!! A parent's dream.

I do hope that things go smoothly for Nick and for you and your wife, but do watch for herxing. I hope that they talked with you about this - if not, we have other parents that deal with helping young children detox here on this forum that you can talk with.

I hope that Nick heals well and quickly!
Posted 9/8/2014 3:31 AM (GMT 0)
Thank you, Traveler. We specifically asked about detoxing, and that is where Nick's age (5) and current activity level - very active, came into play. I guess at the age of 5, we haven't had the opportunity to screw up our body too much, so Nick should be able to handle the detoxing with some fairly low level assistance. I'll have to check my notes, but in general, make him eat a lot of healthy, balanced foods, cut down on the sugars, drink LOTS of water, and run around as much as he can. The more we can get his system to circulate, and subsequently sweat out or eliminate all of those toxins, the better.
We will still be keeping up with the probiotics, and probably going heavy on the P fruits, and some of the other things you do. My wife is very into the organic, natural foods, and her sister works with Chinese medicine, so we'll be considering some other things if we can work them in, but bottom line is that they think Nick's body can handle this largely on it's own.
Having said that, I will be monitoring things closely, and being attentive to the detox and herxing posts.
Long day/week/etc. More towards the end of the week after we get him started on everything tomorrow.
Posted 9/9/2014 6:55 AM (GMT 0)
This might sound like a stupid question but, what was the traffic congestion like in DC...? As bad as it seems on tv?

$2k is a drop in the proverbial bucket of the $20-25k that I've spent on my lyme treatment for the past three years. But, the travel to DC from the Midwest, and the traffic in DC are major turn-offs for me. I'd be scared of getting lost in such a large city.
Posted 9/9/2014 10:37 AM (GMT 0)
The traffic was bad, but I had a good gps system. It would have been tough without it.
We stayed with family about 30 miles west of DC. We allowed 2 hours to get to the appointment. It took about an hour and a half to get there. It probably would have been faster, but even with the gps, I got caught in the wrong lane, missed a turn, etc.
I don't know who you are using in the midwest, but I did speak with a couple of docs up around St. Louis and U of AR. I can pass along some info if you email me.
Posted 9/9/2014 4:51 PM (GMT 0)
I would love to have that info, PFB, if you wouldn't mind!! I'm always collecting all the info I can about these infections and the doc's that treat them in hopes that I can help more people. Although, my husband thinks I'm nuts..... smilewinkgrin

I'm so glad that you asked specifically about detoxing, and I really hope that all goes as the doc's laid out for you! I hope that all parts of your little one's treatments and recovery go as smooth as possible. It just breaks my heart when children have these infections - I know how much they interfered with my childhood.
Posted 9/9/2014 8:35 PM (GMT 0)
Traveler, I've been building contact files for all of the doctors I've been speaking with. Many of the contact cards I have are just name, phone, some basics, but I'm "fleshing them out" as I go. Might be a few more days before I catch up, but I'll send them along to you when I get them done.
Posted 9/9/2014 9:23 PM (GMT 0)
That would be just soooo awesome, PFB!! turn Like I said, it would help a lot of other people!! When you have the time I would be tickled to receive such a generous gift. :-)
Posted 9/10/2014 12:24 AM (GMT 0)
Thanks for the info! May I ask how long it took you to get in for an appt? Months?
I'm local thankfully :) our traffic isn't so bad but I'm used to it, and I avoid appts early in the morning and at rush hour.

Post Edited (cappuccinocurls) : 9/9/2014 6:27:54 PM (GMT-6)

Posted 9/10/2014 12:27 AM (GMT 0)
Also, if you don't mind sharing - how are you working treatment from FL? Is the practitioner working with another doc local to you? How are you getting certain items converted under insurance, like the abx?

I've always been slightly concerned about cost. Like if I go to an LLMD and get bloodwork, would the Bloodwork not be covered purely bc it was taken at an LLMD? Versus say a labcorp type facility.

Random and I know and thanks
Posted 9/10/2014 12:32 AM (GMT 0)
All my labcorp blood work, and oral antibiotics have been covered. LLMDs send routine tests to Labs that are covered by insurance.
Posted 9/10/2014 1:22 AM (GMT 0)
I'm in the military, so I took the prescriptions for the antibiotics to the base pharmacy. They filled them - no problem. I'm not sure how things will work with the lab, but the folks at Dr. J's didn't think it would be a problem. I'm brand new to this, so I'd defer to folks like Traveler and some of the others who have been dealing with this for a while to give you a more definitive answer.
Posted 9/10/2014 9:16 PM (GMT 0)
I think that if the LLMD understands that you are from out of town, or out of state, they would be happy to write out a paper prescription that you can take to your pharmacy - or maybe they will call it in anyway? You may need to remind them every time, but I think most of them understand that in our desperate attempt to find healing that we will travel great distances to find a doctor that will help us.
Posted 4/29/2015 11:36 AM (GMT 0)
How is Nick doing, PFB214?
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