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Posted 6/9/2019 11:48 PM (GMT 0)
Hi fellow Lyme heroes,

I have seen a bunch of people and am on the hunt for someone else as I have not had much success with treatment. I have seen a handful of Doctors, I'm okay with paying the hefty initial visit fee (when it's not crazy--2k+ I consider crazy, nor can I afford it). When a doctor gives careful consideration to my case, it's priceless, but if every 5 minute consideration, like a quick phone call or email question is hundreds of dollars, that's too much for me . Just looking for someone who is compassionate, good listener, co-infection literate as bart seems to be the main culprit, current on research or latest successful ideas, and integrative of allopathic and naturopathic modalities. I live in Westchester and traveling is tough so the closer the better. Thank you mucho. I think names are banned on the forum so please email me. I may have a suggestion as well, as I have seen at least a half dozen people between NYC area and Boston that were good. Thanks. Best,
Nathan
Posted 6/16/2019 10:35 PM (GMT 0)
Bumping for more views
Posted 6/16/2019 11:09 PM (GMT 0)

HealPath said...
Hi fellow Lyme heroes,

I have seen a bunch of people and am on the hunt for someone else as I have not had much success with treatment. I have seen a handful of Doctors, I'm okay with paying the hefty initial visit fee (when it's not crazy--2k+ I consider crazy, nor can I afford it). When a doctor gives careful consideration to my case, it's priceless, but if every 5 minute consideration, like a quick phone call or email question is hundreds of dollars, that's too much for me . Just looking for someone who is compassionate, good listener, co-infection literate as bart seems to be the main culprit, current on research or latest successful ideas, and integrative of allopathic and naturopathic modalities. I live in Westchester and traveling is tough so the closer the better. Thank you mucho. I think names are banned on the forum so please email me. I may have a suggestion as well, as I have seen at least a half dozen people between NYC area and Boston that were good. Thanks. Best,
Nathan

I know of a LLMD in NY State that a few people have raved about.

I go to Washington DC to Dr JJ and am happy with the clinic.
I travel across the continent to the clinic - started at the clinic in Feb/18 and have only had to travel 3 times so far. Every other appt is a phone appt and after the first two appts, the appts are spaces out now 3-4 months and then 6 months.
The initial consult was not $2k+ either.

Send me an email for more info.

You mentioned you’ve seen some good llmd’s - why are you switching now?

Btw - did you treat Babesia?
Posted 6/17/2019 5:52 AM (GMT 0)
Hi, have you tried Dr. H’s clinic? I believe they’re taking new patients. If not I’d give Dr J’s Clinic in DC a shot.
Posted 6/17/2019 12:55 PM (GMT 0)
Hi Chile Dog,

Dr. H is out of my financial range and also is not taking new patients, even his NP has a 6 month waiting list and requires an initial 5k or something. But this ise the second time I'm hearing a nod for Dr. J, I think I know who that is, his last name end with a K? Bummer, cause I was in DC for an NIH study for another health issue and went to Dr. M, a Bartonella specialist. Sounds like K may have been more my speed. Let me know if I'm on target with who you are referring to and I'll give them a call. Thanks for your input.

Best,
Nathan
Posted 6/17/2019 2:54 PM (GMT 0)
Hey Nathan - I got your email - I will reply today.

I didn’t realize Dr H charged that much?!

Dr J clinic has trained several Nurse Practitioners to take on patients... and they follow his protocols. You can usually get a initial consult (usually 3-4 hours long within a few weeks time.
After the initial consult you can ask to switch to Dr J but most are happy with their NP.

I saw a NP in feb 2018 and switched to Dr J in August 2018.

Was the 5K to see Dr H for more than an appt? Did it include testing...?
Posted 6/17/2019 3:48 PM (GMT 0)
Heh, no, 5k to see the nurse practitioner, 10k to see H who is booked for like 2 years and not taking patients. I think testing is covered if you have insurance unless they use an out of network lab but I really don't know. It's cause we are right near NYC, it's crazy.

Another dude who I like from hearing him speak in lectures in videos online is Dr. Ph , very knowledgeable on Bart which I think is my main issue but he's 2.5k, 6 month waiting list, his NP is 1.5k.

Are your treatments covered? Are they pricey? I don't mind the up front fee (I mean I do, but I get it), but if treatment is all out of pocket also, it's crazy to me
Posted 6/17/2019 4:31 PM (GMT 0)

HealPath said...
Heh, no, 5k to see the nurse practitioner, 10k to see H who is booked for like 2 years and not taking patients. I think testing is covered if you have insurance unless they use an out of network lab but I really don't know. It's cause we are right near NYC, it's crazy.

Another dude who I like from hearing him speak in lectures in videos online is Dr. Ph , very knowledgeable on Bart which I think is my main issue but he's 2.5k, 6 month waiting list, his NP is 1.5k.

Are your treatments covered? Are they pricey? I don't mind the up front fee (I mean I do, but I get it), but if treatment is all out of pocket also, it's crazy to me

Are you sure it's 5K for one appt? That seems like a lot even if it includes testing.

Treatment - is mainly antibiotics/antimalarials...and I have Blue Cross so get something like 80% coverage on most of them.
I'm not on any other pharmaceuticals.

Is that what you're asking? if the medications are covered?
Posted 6/17/2019 4:48 PM (GMT 0)
Dr H’s office is 3k for the initial appointment of 4 hours and 525 after that. That’s all with a PA, not sure what it is for Dr H himself. Doesn’t cover testing or medications. That’s all handled through your insurance. Not sure if they’re taking more patients right now though.

Dr J in DC is just as good by what I’ve heard but Girlie has personal experience with them.

Regards,
Posted 6/17/2019 5:09 PM (GMT 0)
Are we talking about the same H? I don't know maybe they didn't like me and quoted me high. H is H, I get it, supply/demand. When I called, I swear that's what they told me. But I do have encephalitis ;) so sorry if I was spreading misinformation.

It's not unheard of though, there's at least one Neurologist I know in the city that charges 10k. I got like 30 infusions of IVIG from a Neuro in CT, that's like 300k, they were covered though. The nursing company though was only partially covered and that I am still paying off.

ChileDog, who do you see, Dr. H?
Posted 6/18/2019 1:17 AM (GMT 0)
I’m now seeing JF, Dr H’s PA. I’ve had two appointments and it seems to be worth it so far. H does get way more publicity than anyone else and I went to Dr SP in CT before and the prices were similar. Difference being i was seeing the actual Dr not a PA.

Regards,
Posted 6/18/2019 2:23 AM (GMT 0)
Chiledog - I heard Dr SP was good - I’m curious why did u stop going there?
Posted 6/18/2019 2:25 AM (GMT 0)

Chiledog said...
Dr H’s office is 3k for the initial appointment of 4 hours and 525 after that. That’s all with a PA, not sure what it is for Dr H himself. Doesn’t cover testing or medications. That’s all handled through your insurance. Not sure if they’re taking more patients right now though.

Dr J in DC is just as good by what I’ve heard but Girlie has personal experience with them.

Regards,

Dr H is 3 grand? Wow.

Dr J initial consult is under 1 g
And it’s usually 3 hours long
Posted 6/18/2019 2:12 PM (GMT 0)
Chiledog,

Do you like SP? Would you recommend him? I've taken a few steps forward with different peeps but eventually run into, I don't know how to describe it, a certain egotism/stuckness/closed-mindedness or just logistical issue that puts a wrench in things. My med. history is also complicated. SP is someone I identified as wanting to see, he's just got a long waiting list, and I don't know anyone who has seen him, I just watched his testimony (congressional?) and a few lectures and I just like his vibe, he seems very credible, knowledgeable, dedicated, etc. Thanks, you can always email me too.
Posted 6/18/2019 2:59 PM (GMT 0)
SP in CT doesn't take patents anymore. It's his nurse practitioners only now. I went there and they didn't pick up that I have Babesia, which is probably the most critical thing I'm facing. I went through two courses of abx which did nothing. There was nothing about herbal support for the liver, spleen, kidneys, etc. I stopped going and switched back to Buhner.
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