Who Else Sees Dr. J in DC?

Hello all!

I just wanted to see how many of us see Dr. J and whether people have improved on his protocol?

I have been treated by Dr. J for over 1.5 years...and I am probably 65-70% better...I was probably 50% before I saw him.

How long did it take to see improvements? Did you notice a certain protocol worked the best?

That makes sense! The office really helped me along but I think I just switched to the bart treatment- I will be taking Augmentin, rifabutin, minocycline, enula, and artemisia on MTW of next week so I will see if I notice any changes!

Are the neurological symptoms from Lyme or Bartonella? Yesterday I was having severe neurological symptoms and tremoring so much I could barely type! I think these are from bartonella but not sure.

Post Edited (Lvg123) : 6/22/2018 9:37:18 PM (GMT-6)

Dahlias said...
I've been going to the clinic for 9 months. I would say I'm at least 75% better than when I started. (I started in the middle of a long and severe flare/herx caused by treatment errors elsewhere.) My neuro symptoms have been Lyme and babesia.

Dahlia your story represents what I went through too. I was treated by incompetent doctor for about 9 months and he didn't know what he was doing. I started with Jemsek in December 2016 and have been with him ever since.

I have a ton of neuro symptoms as well. I originally had very bad sweating and breathing from babs but those symptoms have gone away on babs treatment. I am now starting bart treatment (next week) and I hope it works.

I am only about 65% right now. I need to get to 90%.

Dahlias said...
Good luck! Let me know how it goes. I have an appointment in two days and I hope they let me continue with babesia treatment before moving to bart. I don't feel like I'm done with this yet.

How long have you been on babesia treatment?


Doing the double dose of mepron, right?


I'm the opposite - I'm hoping I switch to Bart at my next appt.

It will be 6 cycles of Babs for me.(from feb to august)

When I was there for my conduit - the PA said my liver and spleen were not swollen...

Dahlias said...
Girlie, 6 months. Yes, double dose of Mepron. What does it mean in terms of treatment if your liver and spleen aren't swollen?

Apparently Babesia can cause them to swell.

Do you remember the practitioner pressing on your abdomen when doing the physical during your initial consult?
Mine wasn’t swollen then (I had just been on about 7 months of Babs treatment prior to switching to the clinic) but I was put on Babs treatment anyway - I guess to make sure

I hope that hasn’t changed when I go in August

bump

One good thing to say is...I was on deaths doorsteps when I originally saw Jemsek and I can say definitively that is not the case now...I am probably about 65% now and it's only been 1.5 years I've been seeing them.

I couldn't walk in a straight line when I first saw them. And it was actually too painful for me to even lift my head from the pillow or watch television in my bed. So I have gotten much much better and think they are wonderful. I just wanted to know if there were people who are like 95-100% better from them.

Such wonderful news, Yancync! and thank you for posting this update.


What a journey you and your DS have been on!

i just got back from seeing Joseph (I'm on a first name basis with him now LOL). my wife sees him also we had back to back appointments.

i've been seeing Dr. J since Mar 2017. Before that I spent 2 years seeing two other LLMD's in the NYC area one prominent but I wasn't making the progress I felt I should so switched to Dr. J.

I'm definitely better than when I started and this is after 2 years of various abx cocktails. Sure the abx's made me somewhat better before Dr. J but the problem was the approach wasn't consistent with knocking back the infections in an organized way.

Dr. J believes (and now I do as well) that Babesia is almost always the reason people stay chronically ill or relapse. He takes a long view and is quite conservative when treating this little bugger so it can go a while. I did 13 straight months of a babesia focused protocol and just finished 4 months of the persister/bart protocol which still hits babesia the first week of the cycle.

During this time I'm like I'm ready to switch to the next protocol cause my issues aren't from babesia. I fought with myself for sure but stuck to the program and its paying dividends.

He's got me transitioning to a maintenance protocol over the next 4-6 months which really means i'm taking less drugs and more time off of them.

I highly recommend Dr. J he's been at this a very long time and only does this disease. He's also actively involved in progressing research. For example he told me that they're learning more about lactoferrin and next appt he could tell me what the advances are.

He also said the lyme bug is even more complex/evolved than even current research understands and they're learning new stuff daily.

Understand I still have symptoms esp when I take the meds but I have nerve damage from these bugs and that will take time to heal. Also your immune system has to take over taking care of these pathogens so his pulsed approach and long term strategy gets you there.

Sheeks175 said...
Rikky I love it! I remember you posting about how discouraged you were without making progress at the clinic. So great to hear that things are on the upswing. I will be heading to the clinic in September.

okay - so you made a decision - or are you seeing both Dr. J and Dr. P?

Sheeks175 said...
I haven't cancelled Dr P yet, but I am 90% certain I will. The babesia treatment that Jemsek does is the differentiating factor. I think that it is a big player that Dr P is missing. Dr P will treat based on the research available, which we all know sucks. Therefore he chooses to not treat babesia long term because he hasn't seen proven persistence of it in the literature. This is my understanding at least.

Published science is so limited in lyme that I think you have to use clinical evidence like Jemsek does.

Be prepared to do a looonnngg run at Babs... and wanting to stop before they want you to!
And it is double dose of Mepron compared to what most llmd’s prescribe.

But the pulsing helps make it tolerable - and the upcoming antibiotic breaks of one or two weeks helps get you thru the rough times.

Sheeks175 said...
Girlie any tips on what I can do with my doctor now to speed up the process? Should I switch back to a babesia protocol now? Got a little less than 3 months till the appointment.

I don’t know if it would change anything dr J does.
I did 7-8 months of Babesia prior to seeing the NP at the J clinic but they put me on their Babs protocol anyway... probably because the Mepron was 1/2 dose of what they prescribe.
I understand why they do this - they know what works - and if they skip that part - and had me go on to bart focussed treatment - and I didn’t respond - then what? Have me then do their full Babesia protocol after wasting several months on not responding to bart treatment? It muddies the water - they have a method - a protocol that they do get results (of course it’s tweaked for each person depending on if they’ve tested positive for certain coinfections, how they respond to treatment, what their symptom pkg looks like, etc)

I’m hoping that I have a shorter run at Babs - based on the fact that I had no liver or spleen swelling at my initial consult, I have a pcr positive bart test AFTER over a year of treating Bart, my symptoms left seem mostly Barty, and Im not getting the bad head pressure when I take Mepron anymore.
Also not sweating much - just a bit.

It will be almost 6 months of Babs when I go back - so it’s still a good “run” .

Its up to you - maybe it would shorten the amount of time.. I’ll let you know in August.. lol

Lvg123 said...

Girlie said...

Sheeks175 said...
Girlie any tips on what I can do with my doctor now to speed up the process? Should I switch back to a babesia protocol now? Got a little less than 3 months till the appointment.

I don’t know if it would change anything dr J does.
I did 7-8 months of Babesia prior to seeing the NP at the J clinic but they put me on their Babs protocol anyway... probably because the Mepron was 1/2 dose of what they prescribe.
I understand why they do this - they know what works - and if they skip that part - and had me go on to bart focussed treatment - and I didn’t respond - then what? Have me then do their full Babesia protocol after wasting several months on not responding to bart treatment? It muddies the water - they have a method - a protocol that they do get results (of course it’s tweaked for each person depending on if they’ve tested positive for certain coinfections, how they respond to treatment, what their symptom pkg looks like, etc)

I’m hoping that I have a shorter run at Babs - based on the fact that I had no liver or spleen swelling at my initial consult, I have a pcr positive bart test AFTER over a year of treating Bart, my symptoms left seem mostly Barty, and Im not getting the bad head pressure when I take Mepron anymore.
Also not sweating much - just a bit.

It will be almost 6 months of Babs when I go back - so it’s still a good “run” .

Its up to you - maybe it would shorten the amount of time.. I’ll let you know in August.. lol

Hey Girlie! For me the biggest indicator that babs was gone was when the sweating stopped. I did have my spleen and liver checked the first visit but I haven't had it since. If the sweating comes back then I know babs is rearing it's ugly head again.

I'm still on Artemisia and/or Crypto during my medication days so I think those are more maintenance of babs. I can def say once the babs was gone a lot of my symptoms improved. I now need to focus on my fatigue and neuro symptoms.

I think what is most discouraging is how longgg the treatments really are. I was thinking I'd be better in 2 years max but it's really a 5-10 year treatment window. And even after that it will always be a maintenance treatment for the rest of my life.

I am sweating a bit - but not sure if it’s all due to Babs - it might be adrenals out of whack.


Are you taking or did you take Clindamycin? Dr J sometimes prescribes it - helps keep Babesia at bay.

Are you doing mainly bart treatment now?

5-10 years? That’s a long time! 5 not so bad - BUT 10?
Maybe it will be 3-4
And always on maintenance the rest of your life? Is that your thought or did a LLMD tell you that?