Another question for people who have seen Dr J

thats one of the shortcomings. i was in the same boat, i wanted to babesia treatment, but they started me on their lyme protocol. but ultimately i found out what i really needed was bartonella treatment from my prior llmd, had i stayed with JSC, it would have been a year to get to bartonella which would have never worked for me, or months of fighting the their protocol to get where i needed to be.

just trying to give objective feedback about the process. the people that are fans of JSC, always try to promote it, but there is always the perspective on the flipside. just like with any doc.

SierraDon - Aerose has just had his first appt. I do not think he should be calling and pushing for Mepron at this point. He needs to have some faith in the system...in the clinic he has chosen. I doubt if they would acquiesce and change to a Babesia focussed protocol anyway.
The clinic has their reasons for starting with a lyme/stabilization protocol...before going into the full-on Babesia protocol.

My first protocol with the J clinic was Babesia focussed....probably because of my prior treatment protocols.
I did that for a couple of months...and then my second protocol was their full-on babesia protocol...which can be difficult to tolerate.

Yes, it will most likely be 3 months (maybe longer - depending on how he tolerates/reacts to this first protocol) before Aerose is prescribed the Mepron...

In the big picture - 3 months on a non-babesia protocol really isn't anything to be concerned about IMO.

sierraDon said...



thats one of the shortcomings. i was in the same boat, i wanted to babesia treatment, but they started me on their lyme protocol. but ultimately i found out what i really needed was bartonella treatment from my prior llmd, had i stayed with JSC, it would have been a year to get to bartonella which would have never worked for me, or months of fighting the their protocol to get where i needed to be.

just trying to give objective feedback about the process. the people that are fans of JSC, always try to promote it, but there is always the perspective on the flipside. just like with any doc.

I have always been honest with my comments about the JSC - there are some negatives - one being the response time when you call the clinic and want an answer.
But, I have to say that lately - it's improved since I first started going there in February.

They won't skip to the bartonella/persisters protocol just because someone wants them to. They believe babesia needs to be out of the way first....and until they treat you for Babesia....you won't be getting the Bart protocol.
I think it's a good thing that they don't just 'willy nilly' give the patient whatever protocol they want...seriously that doesn't even make sense.
Dr. J has set up these protocols based on his extensive experience treating patients for many years.
It's what he sees as the best way to get people into remission.

For those who think that the pulsing isn't 'strong' enough......give it more time...and I'm sure you'll change your mind....

Dahlias said...

sierraDon said...
the people that are fans of JSC, always try to promote it, but there is always the perspective on the flipside. just like with any doc.

Lol. I guess that's for me. If you saw my past posts, you'd know I've been a critic of things there as well, including the inflexibility of my first NP there. But I improved 80%-85% in 9 months with them before an allergic reaction and a virus set me back. (Made progress again in the last round, so hopefully getting back on track.) I am a fan of what helps me get better, and they have helped me a great deal over the past year.

Wishing best health to all, no matter the route.

darn! You improved that much that fast?! That's fantastic. Can I ask how long you were sick before going there?

sierraDon said...

Girlie said...

sierraDon said...

Aerose91 said...

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

Aerose91, if you want treatment for babesia, you will have to advocate for yourself. otherwise you will follow the same predefined protocol. which means you will have to make repeated phone calls, to try to get it done. otherwise you will be stuck with the same protocol for 3-4 months goin nowhere before you switch to the next one. you will have to make the process work for you.

thats one of the shortcomings. i was in the same boat, i wanted to babesia treatment, but they started me on their lyme protocol. but ultimately i found out what i really needed was bartonella treatment from my prior llmd, had i stayed with JSC, it would have been a year to get to bartonella which would have never worked for me, or months of fighting the their protocol to get where i needed to be.

just trying to give objective feedback about the process. the people that are fans of JSC, always try to promote it, but there is always the perspective on the flipside. just like with any doc.

SierraDon - Aerose has just had his first appt. I do not think he should be calling and pushing for Mepron at this point. He needs to have some faith in the system...in the clinic he has chosen. I doubt if they would acquiesce and change to a Babesia focussed protocol anyway.
The clinic has their reasons for starting with a lyme/stabilization protocol...before going into the full-on Babesia protocol.

My first protocol with the J clinic was Babesia focussed....probably because of my prior treatment protocols.
I did that for a couple of months...and then my second protocol was their full-on babesia protocol...which can be difficult to tolerate.

Yes, it will most likely be 3 months (maybe longer - depending on how he tolerates/reacts to this first protocol) before Aerose is prescribed the Mepron...

In the big picture - 3 months on a non-babesia protocol really isn't anything to be concerned about IMO.

Aerose has been through it quite a bit, for me it makes no sense starting the lyme protocol, from what i remember aerose has been on various other treatments that touch/hit lyme. it speaks to the inflexibility of the process.

why wait if knowingly that is why Aerose switched to JSC for a babesia focused treatment.? its just adding to the overall length of the treatment.

Maybe because LLMD's all treat differently. What if Aerose prior treatment/protocols weren't what Dr. J figures is sufficient before adding in Babs meds? Dr. J would have to go through everyone's prior protocols and analyze them to see if it warranted skipping his protocols and going directly to babesia.
....he prescribes the protocols that he has had best success with...

Without asking Dr. J directly.....we don't know really....

Hey Aerose - Our family of four goes to JSC. Each of us started treatment at the same time but when we started the Babesia protocol differed.

Just to give you an example. I started Babesia protocol after 2 months whereas my daughter didn't start Babesia protocol until 6 months in.

They really look at the individual. My daughter's system was highly inflamed. JSC didn't want to rush into Babesia with her because they wanted her first to be in a stable place. I really appreciate that approach.

Just wanted you to know in case they keep you on the intro protocol a little longer.

Aerose - Yes. I was in a more stable place and my symptoms were more babesia in nature. Meanwhile my daughter had a ton of neurological issues (emotional, visual, auditory). The JSC wanted her inflammation own as low as possible before proceeding to Babesia. Babesia protocol can really be hard mentally/emotionally for some.

Sounds like babesia really is the culprit for most. They told me lyme, then babesia so hopefully they'll add in some babesia med.s at my next follow up

Aerose91 said...
Sounds like babesia really is the culprit for most. They told me lyme, then babesia so hopefully they'll add in some babesia med.s at my next follow up

My follow up was 9 weeks after initial consult...and I had a minor protocol change at that point but I’ve talked to people who continued on same protocol for a few more months.

My change was just increasing days I take mepron on one of the two weeks I take it.

Man i hope they add in a cabal of new stuff at the next follow up, assuming I'm not floored by this protocol by that time. Given my history i have to assume i wont be but hey, you never know

KentuckyOConnor said...
Question for you guys under treatment with Dr j clinic.. I’m about to start on my first round of their treatment. Augmentin & septra MWF week one, week 2 Augmentin & septra MWF with flagyl Tuesday and Thursday and week 3 off.. I’m concerned because all in all I have been on doxy about 6 weeks. By week 3 my POTS symptoms reduced by close to 75%. Last week they put me on a maintenance dose of doxy MWF and last Friday I ran out so I missed that day and went from Wednesday to Sunday without any doxy and by then I was in rough shap. I HAVE to work.. I’m worried that the augmentin, septra and flagyl won’t keep me at a functioning state.. will this be true? Or should it do what the doxy does for me and keep me functioning?

I don’t know if it will keep you functioning like the doxy.
You may go through some rough periods.

Isn’t your Flagyl scheduled for Th and Friday?
Did you not start the bactrim and augmentin on Monday?
And how are you feeling today?

PeppermintTea said...
Something we do here is we have our son take Flagyl on the weekends instead of school days. So his med week is Wed-Sunday instead of the typical Monday -Friday. He would rather feel off on the weekends rather than feel badly at school. Just a thought.

Do you just do that on your own (change the schedule) or do you have the NP’S approval?

We do it on our own, Girlie. I didn't ask for approval. I just make sure to stick to the same schedule each week.