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Another question for people who have seen Dr J

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Posted 11/25/2018 11:57 PM (GMT -5)
When you say nurse, do mean one of Dr Js PAs? And if so, what were her initials?
Posted 11/26/2018 12:22 AM (GMT -5)

Aerose91 said...

Dahlias said...
Don't most doctors have protocols for things? You have pneumonia, you get a certain antibiotic for a certain amount of time, and then they re-evaluate. Same with most illnesses. I don't see this as any different. I'm actually reassured that they have seen enough patients to have developed a set of protocols to use as foundations. Before, I felt like a guinea pig, and it seemed like other doctors had little clue what might actually work. You may be sicker or more complex than many, but they will start with one of their protocols and then adjust based on your response. And he sees an especially high number of difficult cases. I know that a number of highly regarded LLMDs here in northern VA refer patients to him when they give up.

His reputation is certainly why i went to him but the nurse seemed a bit dumbfounded by my case when we first met. I asked her if they had ever seen a case like mine and her eyes got wide and said "brain involvement THIS bad, for THIS long, untreated? Haha, no" Dr M had a similar response to my brain scans and symptom list as well as duration. So, a little disconcerting but im hoping Dr J can figure it out. I guess that's why i have been sort of concerned at their confusion of not only my brain scans but also my failures at the stabalization med.s
Tomorrow i start the abx though so fingers crossed. That's what matters anyway

I'm wondering if you have a more inexperienced NP treating you.
You could call now that you've had your initial consult and ask to be put on Dr. J's waitlist for your 2nd or 3rd appt.
That's what I did. I was 'lucky' that my NP left the office....and then the second one also left. (I guess I'm hard on those Nurses...lol) so - I finally ended up with Dr. J partly because of that.

Although I think RM has been there for quite awhile....

Re: maybe those of us who don't do the stabilization meds...or try them and get a bad reaction don't tell their practitioner. So, they think they're working for most...maybe?

Starting your abx tomorrow. You're just on a M/W/F right? I hope so...you need to ease into this.
Amoxy plus bactrim. The amoxy was good...but the bactrim gave me some skin 'spots' or 'lesions'...I ended up discontinuing...but it is powerful...so be expecting the bactrim to hit you hard.
The amoxy is gentle In my opinion. And the third is azithromycin? I found that one not too bad either.
Posted 11/26/2018 12:24 AM (GMT -5)

Hoagie said...

Aerose91 said...

Dahlias said...
Don't most doctors have protocols for things? You have pneumonia, you get a certain antibiotic for a certain amount of time, and then they re-evaluate. Same with most illnesses. I don't see this as any different. I'm actually reassured that they have seen enough patients to have developed a set of protocols to use as foundations. Before, I felt like a guinea pig, and it seemed like other doctors had little clue what might actually work. You may be sicker or more complex than many, but they will start with one of their protocols and then adjust based on your response. And he sees an especially high number of difficult cases. I know that a number of highly regarded LLMDs here in northern VA refer patients to him when they give up.

His reputation is certainly why i went to him but the nurse seemed a bit dumbfounded by my case when we first met. I asked her if they had ever seen a case like mine and her eyes got wide and said "brain involvement THIS bad, for THIS long, untreated? Haha, no" Dr M had a similar response to my brain scans and symptom list as well as duration. So, a little disconcerting but im hoping Dr J can figure it out. I guess that's why i have been sort of concerned at their confusion of not only my brain scans but also my failures at the stabalization med.s
Tomorrow i start the abx though so fingers crossed. That's what matters anyway

When you say nurse, do mean one of Dr Js PAs? And if so, what were her initials?

Dr. J has NP's .
Posted 11/26/2018 12:50 AM (GMT -5)
RM is very experienced.
Posted 11/26/2018 1:56 AM (GMT -5)

Dahlias said...
RM is very experienced.

Good to know - in case I end up back with a NP down the road.

Is KF still there?

I had my initial consult with KL
Posted 11/26/2018 2:22 AM (GMT -5)

Girlie said...


Good to know - in case I end up back with a NP down the road.

Is KF still there?

I had my initial consult with KL

There's a K still there -- I don't know her last name but she's been there a long time too. I've heard some good things about her but I'm very happy with RM.
Posted 11/26/2018 2:55 PM (GMT -5)

Girlie said...
My previous Lyme doc never considered Babesia treatment for me (other than a few rounds of Artesunate/Artemisinin.


Did artemisinin do anything for you?

I don't know about babesia, but this study claims artemisinin is effective against borrelia burgdorferi in vitro: https://www.frontiersin.org/articles/10.3389/fmicb.2016.00743/full
Posted 11/26/2018 3:10 PM (GMT -5)

Quin said...

Girlie said...
My previous Lyme doc never considered Babesia treatment for me (other than a few rounds of Artesunate/Artemisinin.


Did artemisinin do anything for you?

I don't know about babesia, but this study claims artemisinin is effective against borrelia burgdorferi in vitro: https://www.frontiersin.org/articles/10.3389/fmicb.2016.00743/full

I did seem to herx on it - did several rounds of Artemisinin. (You have to pulse it)
But after I don’t think I had improvement.

Re: in vitro
In vitro doesn’t necessarily equate to in vivo unfortunately.

Research showed that CBD oil was effective against spirochete and biofilms... but it doesn’t appear to work for most people who tried it.
Posted 11/26/2018 4:38 PM (GMT -5)

Hoagie said...

Aerose91 said...

Dahlias said...
Don't most doctors have protocols for things? You have pneumonia, you get a certain antibiotic for a certain amount of time, and then they re-evaluate. Same with most illnesses. I don't see this as any different. I'm actually reassured that they have seen enough patients to have developed a set of protocols to use as foundations. Before, I felt like a guinea pig, and it seemed like other doctors had little clue what might actually work. You may be sicker or more complex than many, but they will start with one of their protocols and then adjust based on your response. And he sees an especially high number of difficult cases. I know that a number of highly regarded LLMDs here in northern VA refer patients to him when they give up.

His reputation is certainly why i went to him but the nurse seemed a bit dumbfounded by my case when we first met. I asked her if they had ever seen a case like mine and her eyes got wide and said "brain involvement THIS bad, for THIS long, untreated? Haha, no" Dr M had a similar response to my brain scans and symptom list as well as duration. So, a little disconcerting but im hoping Dr J can figure it out. I guess that's why i have been sort of concerned at their confusion of not only my brain scans but also my failures at the stabalization med.s
Tomorrow i start the abx though so fingers crossed. That's what matters anyway

When you say nurse, do mean one of Dr Js PAs? And if so, what were her initials?

Yes, it's RM. Others here say she's very good and experienced so i believe them.

I guess my concern is in a situation where i told her about my poor reaction to diamox she had no idea why that would happen and seemed baffled. I talked to Dr M a few weeks later and told him of my reaction to diamox and he broke it down and gave a pretty in depth reason why those particular symptoms could happen and the biological process etc... It's nice to speak with someone who can figure things like that out and then use that information toward narrowing down future protocols. RM just didnt know what it was so just moved me on to Gabapentin, the next item on the checklist. Know what i mean?
Posted 11/26/2018 4:43 PM (GMT -5)

Girlie said...

Aerose91 said...

Dahlias said...
Don't most doctors have protocols for things? You have pneumonia, you get a certain antibiotic for a certain amount of time, and then they re-evaluate. Same with most illnesses. I don't see this as any different. I'm actually reassured that they have seen enough patients to have developed a set of protocols to use as foundations. Before, I felt like a guinea pig, and it seemed like other doctors had little clue what might actually work. You may be sicker or more complex than many, but they will start with one of their protocols and then adjust based on your response. And he sees an especially high number of difficult cases. I know that a number of highly regarded LLMDs here in northern VA refer patients to him when they give up.

His reputation is certainly why i went to him but the nurse seemed a bit dumbfounded by my case when we first met. I asked her if they had ever seen a case like mine and her eyes got wide and said "brain involvement THIS bad, for THIS long, untreated? Haha, no" Dr M had a similar response to my brain scans and symptom list as well as duration. So, a little disconcerting but im hoping Dr J can figure it out. I guess that's why i have been sort of concerned at their confusion of not only my brain scans but also my failures at the stabalization med.s
Tomorrow i start the abx though so fingers crossed. That's what matters anyway

I'm wondering if you have a more inexperienced NP treating you.
You could call now that you've had your initial consult and ask to be put on Dr. J's waitlist for your 2nd or 3rd appt.
That's what I did. I was 'lucky' that my NP left the office....and then the second one also left. (I guess I'm hard on those Nurses...lol) so - I finally ended up with Dr. J partly because of that.

Although I think RM has been there for quite awhile....

Re: maybe those of us who don't do the stabilization meds...or try them and get a bad reaction don't tell their practitioner. So, they think they're working for most...maybe?

Starting your abx tomorrow. You're just on a M/W/F right? I hope so...you need to ease into this.
Amoxy plus bactrim. The amoxy was good...but the bactrim gave me some skin 'spots' or 'lesions'...I ended up discontinuing...but it is powerful...so be expecting the bactrim to hit you hard.
The amoxy is gentle In my opinion. And the third is azithromycin? I found that one not too bad either.

Yah M/W/F, Flagyl Thurs/Fri, 2 weeks on, 1 week off. I'm actually kind of baffled by how few days im taking the abx. Is it enough? Considering I've had zero effect from super high doses of herbs or abx im hoping this pulsing method is to increase effectiveness, not make the intro softer. It's been 7.5 years, give me the sledgehammer! <-- i actually told RM that and she laughed
Posted 11/26/2018 4:55 PM (GMT -5)

Aerose91 said...
Yes, it's RM. Others here say she's very good and experienced so i believe them.

I guess my concern is in a situation where i told her about my poor reaction to diamox she had no idea why that would happen and seemed baffled. I talked to Dr M a few weeks later and told him of my reaction to diamox and he broke it down and gave a pretty in depth reason why those particular symptoms could happen and the biological process etc... It's nice to speak with someone who can figure things like that out and then use that information toward narrowing down future protocols. RM just didnt know what it was so just moved me on to Gabapentin, the next item on the checklist. Know what i mean?

I see your point. Yes, maybe Dr. J would answer that way, but not RM. Her forte lies more in knowing what has worked for many people than the scientific whys.
Posted 11/26/2018 4:56 PM (GMT -5)
Oh i forgot to ask, how long does ut typically take to see any reactions to the med.s on this pulsing protocol? I mean herx, improvement, negative reactions.... anything
Posted 11/26/2018 5:02 PM (GMT -5)
“Yah M/W/F, Flagyl Thurs/Fri, 2 weeks on, 1 week off. I'm actually kind of baffled by how few days im taking the abx. Is it enough? Considering I've had zero effect from super high doses of herbs or abx im hoping this pulsing method is to increase effectiveness, not make the intro softer. It's been 7.5 years, give me the sledgehammer! <-- i actually told RM that and she laughed”

Yes that’s one of the regular schedules - and yes it’s enough.

It gets more “interesting” as time goes on and you do the Babesia protocol.
Generally end up taking the meds for 5 days in a row for one of the weeks.
- you will have two abx plus an antimalarial to take together.

So you haven’t been herxing on previous protocols?

Your extreme symptoms are your baseline day in and day out?

Did you relay this info to RM?
Posted 11/27/2018 12:50 AM (GMT -5)

Girlie said...
“Yah M/W/F, Flagyl Thurs/Fri, 2 weeks on, 1 week off. I'm actually kind of baffled by how few days im taking the abx. Is it enough? Considering I've had zero effect from super high doses of herbs or abx im hoping this pulsing method is to increase effectiveness, not make the intro softer. It's been 7.5 years, give me the sledgehammer! <-- i actually told RM that and she laughed”

Yes that’s one of the regular schedules - and yes it’s enough.

It gets more “interesting” as time goes on and you do the Babesia protocol.
Generally end up taking the meds for 5 days in a row for one of the weeks.
- you will have two abx plus an antimalarial to take together.

So you haven’t been herxing on previous protocols?

Your extreme symptoms are your baseline day in and day out?

Did you relay this info to RM?

Yup, my symptoms don't fluctuate, it's unwavering 24/7. RM knows, i told ger everything.

I herx'd for about 2 weeks when i started Buhner's bartonella herbs. It was a bit of fluish malaise and a significant amount of anxiety but after a couple weeks it faded and nothing changed. I had about 4 weeks of very mild die off on Dr M's most potent bartonella protocol but again, nothing improved. Id say i have treated bartonella for about 15 months, lyme herbs for 8 and sida, cryptolepis, alchornea and artimsinin for babesia with no improvement
Posted 11/27/2018 1:09 AM (GMT -5)
Aerose - wow - that’s crazy!

I really hope that dr j’s protocols will be different from your past experiences.

Did RM have any idea why you didn’t respond - at all - good or bad to previous protocols ?

Or Dr M - what we’re his thoughts on it?
Posted 11/27/2018 3:56 AM (GMT -5)
No mepron for babesia?
Posted 11/27/2018 9:07 AM (GMT -5)

Girlie said...
Aerose - wow - that’s crazy!

I really hope that dr j’s protocols will be different from your past experiences.

Did RM have any idea why you didn’t respond - at all - good or bad to previous protocols ?

Or Dr M - what we’re his thoughts on it?

She thought i didn't respond because i haven't treated lyme specifically enough and since that's the immune suppressant, bartonella treatment wouldn't have worked. I don't remember her mentioning why the herbs may not have worked.
Dr M, he just says that any number things could cause the immume response- infectious or other- so we need to start over and look at all avenues. Thats when i decided to start at Dr J to get a second opinion. RM seemed pretty convinced I have lyme
Posted 11/27/2018 9:11 AM (GMT -5)

Dahlias said...
No mepron for babesia?

They haven't given me anything for babesia yet, im hoping they do soon because that is what im most curious about
Posted 11/27/2018 9:13 AM (GMT -5)
Some people have very strong response to flagyl. I think it hits both babesia and lyme? Have you taken it before? Will be interesting to see if you get a response.

I'm guessing they are ramping you up to a babesia protocol but it sounds like they want to lower the borrelia load first. They might not treat a lot of days but they get very aggressive, I wouldn't worry on that account ;) although I can understand the impatience for sure!
Posted 11/27/2018 9:18 AM (GMT -5)
Aerose91, thats the same feeling i got with the NPs there. not the same level of knowledge as a seasoned doc. pretty much reading from a script, then when anything falls outside of that box, they are clueless. it seemed like a big song and dance when i went, i wasn't goin for it. They are not reading pubmed articles, attending conferences, following latest research, so you wont get that level of expertise directly with them. just what they are told via their protocols, and from their experience with patience response of their protocols.

its tough place to be when you are used to having a doc that can provide knowledgeable advice.

i would push them to consult directly with Dr J or try to get in with him directly.

for me it was a waste of time to try to work within that process, i hope you can make it work and find some results.
Posted 11/27/2018 9:20 AM (GMT -5)
Aerose- we seem to have been put on the same exact regimen! I see Cw there... being only 24 they had said she is their pediatric PA and she was the first I could get into. I too am miserable most of the day, some of my symptoms have left since taking doxy the last 5 weeks. I’m second guessing that regimen as well.. in my head I’m thinking “how in the world is 3 days of antibiotics going to kill this” just hope it works!
Posted 11/27/2018 9:28 AM (GMT -5)
There's also a facebook Jemsek group (if you guys weren't aware of it already). They might have more info and could answer some questions/concerns as well... a lot of people seem to do well with him (not all of course), but he has a lot of experience with these diseases and has helped put a lot of people back on their feet.

While it doesn't seem like it'd be enough, pulse strategy is a good one imo. Less is more kind of deal, keep lulling the pathogens and then surprising them with antimicrobial blasts...
Posted 11/27/2018 9:41 AM (GMT -5)

sebreg said...
There's also a facebook Jemsek group (if you guys weren't aware of it already). They might have more info and could answer some questions/concerns as well... a lot of people seem to do well with him (not all of course), but he has a lot of experience with these diseases and has helped put a lot of people back on their feet.

While it doesn't seem like it'd be enough, pulse strategy is a good one imo. Less is more kind of deal, keep lulling the pathogens and then surprising them with antimicrobial blasts...

the FB group is good, a lot of info on there. pretty much everyone going through the same process there, with same questions and issues. good place to start
Posted 11/27/2018 10:09 AM (GMT -5)
Aerose, Dr. J believes babesia is often what holds people back. Maybe mepron will make the difference for you when you start on it. (After starting with Lyme, probably to reduce the bacterial load and because of its immunosuppressive effect.)

Post Edited (Dahlias) : 11/27/2018 8:15:05 AM (GMT-7)

Posted 11/27/2018 10:34 AM (GMT -5)
Re: the NPs not being the ones who attend conferences, etc. ... they are there to extend Dr. J's reach since he can't treat thousands of people himself. They are "conferencing" with one of the foremost LLMDs in the world every day. For those who want to see a scientist/MD/PhD directly, you can keep asking to see Dr. J himself and get in eventually, or there are other options. There is a LLMD 20 minutes from me who isn't as well known anymore but he was one of the foremost in the field 10 years ago or so and still active in the research scene. He offers a "concierge service" to see him -- you pay $200 a month on top of the $800 or so per visit. I think the first visit was something like $2,000. Not an option for most people, and I am glad this clinic chose a different approach.

I have had some strange reactions that no other doctor was able to explain, but RM has seen them before and she knew what has helped people in the past (if not the scientific explanation). Definitely not clueless about things that fall outside the box. Practical experience in this field is worth a lot.
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