Jemsek Specialty Clinic

Is this a place worth going if you have been ill for years and previously treated with a LLMD for a long period of time?

I'm looking for a different opinion and a new perspective. I called up to this clinic and I wast pleasantly surprised by their transparency.

My worries are that they are an antibiotic clinic. I know they do the pulsing strategy. That seems controversial among Lyme docs. I've done lots of antibiotics. I have a hard time believing that more antibiotics is the answer for me, but I want to keep an open mind. On the other hand, I'm struggling badly right now and feel like I need guidance. My current doctor is a great person, but I've lost confidence in him. I think a different perspective would be good, but I don't want to waste my time. I'm not sure I'm a fan of not seeing the actual doctor for the first appointment. How are the NPs and PAs at this clinic?

Thanks!

Lymie24 said...
Is this a place worth going if you have been ill for years and previously treated with a LLMD for a long period of time?

I'm looking for a different opinion and a new perspective. I called up to this clinic and I wast pleasantly surprised by their transparency.

My worries are that they are an antibiotic clinic. I know they do the pulsing strategy. That seems controversial among Lyme docs. I've done lots of antibiotics. I have a hard time believing that more antibiotics is the answer for me, but I want to keep an open mind. On the other hand, I'm struggling badly right now and feel like I need guidance. My current doctor is a great person, but I've lost confidence in him. I think a different perspective would be good, but I don't want to waste my time. I'm not sure I'm a fan of not seeing the actual doctor for the first appointment. How are the NPs and PAs at this clinic?

Thanks!

Yes, I do believe its worth going there even after months/years of previous treatments.

When I went to the J clinic in 2018 I had already previously treated with a LLND here in my Province. I had treated from 2014 to 2016 and had plateaued. I was stalled out.
Part of the problem I believe was his inability to prescribe the antimalarials Mepron and Malarone.
Nd’s aren’t permitted here in my Province.
BUT he didn’t disclose that - instead he dodged my questions/requests to treat with Mepron or Malarone.
He prescribed Artesunate (derivative of Artemisinen) .
In 2017 I dropped my LLND and I purchased meds from ADC but couldn’t get the antimalarial Mepron.
A forum member mailed me two bottles of Mepron that she wasn’t using.
I patched a protocol with what I had.
I don’t recall specifics of my protocol but I believe it wasn’t long enough to slay the Babesia beast.

Then in the end of 2017 I felt I needed guidance from a LLMD.
My husband asked me if I could choose anyone in the world - who would I pick.
I said Dr J.
He basically said “Book the flights to DC” “I will request time off of work”
Feb,2018 was my first appt (3 hours in length) at the J clinic.

Since then I have travelled there three times only.
It would have been 4 times but due to Covid I have had phone appointments only.

I have had 9 appts.

Feb/18 in person
April/18 phone
Aug/18 in person
Dec/18 phone
March/19 in person
Sept/19 phone
March/20 phone
Oct/20 phone
June/ 21 phone

I have only had to travel 3 times.
If it weren’t for covid I would have travelled there in Oct/20 instead of phone appt.(so travel would have been 4 times.

Thanks for the advice everyone.

Girlie: Thanks for all the detail. I'm glad they were able to help you out so much. I looked at their website and was impressed. I've really deteriorated since I came off Disulfiram in 2020. If I treat or I don't treat I feel terrible right now. It's like being stuck in between a rock and a hard place. I like their strategy of stabilization so treatment has a better chance of working.

I just booked an appointment a few weeks from now. I'm dreading traveling feeling so bad, but it will be worth it if it helps.

Lymie24 said...
Thanks for the advice everyone.

Girlie: Thanks for all the detail. I'm glad they were able to help you out so much. I looked at their website and was impressed. I've really deteriorated since I came off Disulfiram in 2020. If I treat or I don't treat I feel terrible right now. It's like being stuck in between a rock and a hard place. I like their strategy of stabilization so treatment has a better chance of working.

I just booked an appointment a few weeks from now. I'm dreading traveling feeling so bad, but it will be worth it if it helps.

I just want to note that not all forum members have been happy with the J clinic.
The protocols can be harsh.
But it’s been my experience that they will often adjust/tweak the protocol if you’re having trouble.

I did the IV abx with JSC in 2013. No complaints about his treatment.

The cost of it was pretty high though - at least for me. Most of the cost, again just for me, was the oversight fee.

IMO when anyone is looking for a LLMD you need to to ask about the cost of the oversight fee. This cost does not include the drugs you take. Once you go down the path with any LLMD and find he/she thinks you need IV therapy, you may find it is too expensive for you. For me the choice would have been continuing with orals with him or making the hard switch to one where you can afford the IV.

At the time when I did IV the oversight fee included monthly appt with him, bandage change, and test infusions.

I just watched the IV Therapy and Lyme Disease Q&A (March 31, 2021) | Jemsek Specialty Clinic and he addresses out of state/country people. As Girlie mentions you would have to go there every month. Sometimes he is willing to stretch it.

“ Most of the cost, again just for me, was the oversight fee. “

What is an oversight fee?

WalkingByFaith: I've never tried Cholestyramine. Perhaps it is something worth looking into. I've done quite a bit of charcoal and never noticed too much benefit. is there a way to get it without a Rx? I could ask my current LLMD for a trial, but I also don't want to really start something new before my appointment with JSC in a couple weeks.

Re: IV abx

I'm going into this appointment with an open mind. I want to turn my mind off to what I think I know and give JSC a blank slate chance. However, I probably wouldn't do IV abx through Jemsek. My LLMD is local and has offered me IV abx before. It would probably be cheaper here and definitely would be more convenient.

I'm aware that this visit might not work out, but again, I'm going in with an open mind. I actually really like my current LLMD, but, he is the only one I've ever seen, and I've been seeing him off and on for FIVE years. I had an appointment in December, and afterwards I had to be honest with myself and admit I've lost confidence in his ability to get me better. I think he might be at a loss with me as well. I want fresh eyes to look at my case. Might as well travel to one of the top LLMDs in the country at this point.

That's okay Rosi!

I'm always interested to hear other's stories.

Are you still going to Jemsek? You did IV antibiotics back in 2013? That was a long time ago. Here I am thinking I've been ill forever and I was still two years from acquiring Lyme at that point. Did you have a good experience? Was the IV abx worth it? What's your current condition?

Lymie

I recently (6 weeks) switched treatment focus from abx to adding in things like kefir, black seed oil, allicin and low dose naltrexone. I believe all of these are really good adjuncts. I have tried many others, these seem to help me the most.

I have mcas so many herbals that everyone swears by make me feel like crap, like NAC, quercitin and glutathione.

I still rotate through the fenbendazole. Rotating throught the abx now, not month after month of the same ones, switching regularly.

The LDN is supposed to help ramp up the immune system. The LDN kicked in after 5 weeks at around 2mg daily, it has helped alot with my nerve and vision issues.

I hope you find the right path.

Is it standard at Dr. J's clinic to pay $2,000 per month, plus meds and tests?

Rosi said...
When I was being treated in 2013 the oversight fee was the monthly fee that he charges where you get a monthly appt with him, bandage change, and test infusions. Also different triage line. Wow was it a shock when I stopped them and had to go back to the regular triage.

In 2013 I paid $2000 a month. 7-9 month protocol I think. Then I paid for meds separately. Home health care nurse who changed my bandage weekly was mostly paid for by insurance.

For me that was a lot of money. That is why I suggested getting that info from any LLMD before setting up your initial appt. Another woman was starting IV at the same time. She ended up going somewhere else where the oversight fee was in the low hundreds. So it can vary greatly.

This oversight fee is what I was asking about - does every Dr. J patient pay $2,000 every month as an oversight fee?

I’m a current patient at Jemsek Clinic and am doing IV treatment. I had been to several LLMDs before finding Jemsek and I can say I wouldn’t trust any other LLMD with my health except Jemsek and his staff at this point

His knowledge, care and the way he approaches treatment is unique and it shows. I eventually bit the bullet and traveled to DC Because I talked to people who reached remission at the clinic and my case is more extreme than most so I am doing IV, but Jemsek clinic is where anyone should go if there open to antibiotics and want the most proper and knowledgeable care, just my opinion. I see Jemsek himself but have seen one of the NPs once who was great and have heard positives about the other PAs

Post Edited (ltc1225) : 2/3/2022 10:34:04 PM (GMT-7)

Girlie said...
Wow - thats great!
Hope you get some improvements soon!

ltc1225 said...
I’m a current patient at Jemsek Clinic and am doing IV treatment. I had been to several LLMDs before finding Jemsek and I can say I wouldn’t trust any other LLMD with my health except Jemsek and his staff at this point

His knowledge, care and the way he approaches treatment is unique and it shows. I eventually bit the bullet and traveled to DC Because I talked to people who reached remission at the clinic and my case is more extreme than most so I am doing IV, but Jemsek clinic is where anyone should go if there open to antibiotics and want the most proper and knowledgeable care, just my opinion. I see Jemsek himself but have seen one of the NPs once who was great and have heard positives about the other PAs

Thank you Girle! I know it’s probably helpful for Lymie24 to hear from current Jemsek patients