Jemsek Specialty Clinic

I have been a prior patient of JSC although I am not currently in treatment with them. I have received emails from them starting this past Monday and continuing today, Friday, that they are not seeing patients at the clinic or doing phone consultations. I find this super odd for such a large and well known clinic.

Any idea what is going on?

I found this Facebook post from three days ago:

"I just spoke with them. My appointment on 2/28 is still good to go. I was told that whatever is going on only affects this week so far. Fingers crossed all is ok."

On Instagram, I saw this comment from four days ago:

"Praying that everything is okay with everyone and Dr J is doing better with getting over the Covid."

There were more comments, but I don't have accounts for either site, so I'm limited in what I can see.

So, perhaps Dr. Jemsek developed COVID and is off work recovering? From what I've heard about him, the man could use a break and some rest.

The whole thing is weird. They shut the clinic down for 2 days in October for a covid breakout within the staff. I saw him right after that and he said "you can imagine I was not happy I had to close for 2 days". If something is going on with him I dont understand why the PAs and NPs could still see appts, I think that is what they did in January although they said he was still seeing patients on a limited basis.

I cant even imagine the cost it keeps that practice going. And now with no incoming money.

Post Edited (trkane) : 2/24/2024 2:26:09 AM (GMT-8)

i hope all is well there

Lymie - if you feel like sharing - i would be interested to hear your account of treatment at Jemsek's clinic

i know its a long process so just curious
how far in are you
how is it going so far
how do you feel about the prospects of recovery in 18months

that kind of thing

reason for my interest is that i am following Jemsek style pulsing of antibiotics - but on a self treat basis - since there are effectively no LLMDs in England where i live

Garzie said...
i hope all is well there

Lymie - if you feel like sharing - i would be interested to hear your account of treatment at Jemsek's clinic

i know its a long process so just curious
how far in are you
how is it going so far
how do you feel about the prospects of recovery in 18months

that kind of thing

reason for my interest is that i am following Jemsek style pulsing of antibiotics - but on a self treat basis - since there are effectively no LLMDs in England where i live

Hey Garzie, Yeah no problem. I have been sick a long time and my treatment before Jemsek is worth mentioning in relation to Jemsek so I'll go through that briefly.

* Bit by tick in July 2015, had been attached prob 36-48 hours
* Lots of stuff I won't bore you with until January of 2017 when I starting trying to find a LLMD. Found one nearby
* Did extensive oral abx treatment with this doctor trying to hit Lyme, Babs, and Bart
* To be fair to that LLMD I stopped my intial treatment after 10 months as I felt so terrible and didn't feel like I was making progress.
* Tried herbals on my own, failed, got worse, and went back on abx in summer 2018.
* Went on Disulfiram summer of 2019. By holidays 2019 had noticeable improvement.
* Went off DSF summer 2020. Relapsed a few months later.
* Didn't do much until Feb 2022 when I first established with JSC

I give that background for understanding that I had done extensive oral abx before I ever visited Jemsek. From my first LLMD he had me on abx daily. I never did pulsing until Jemsek.

Jemsek specific:

I went to JSC because of the reputation. I was worried about being a previous non-responder - minimal/moderate to oral abx in the past. They put me through their stabilization phase which did all of nothing for me. We started treatment and I did oral abx, herbs, and mepron from April 2022 to around April/May 2023. In July/August 2022 I got off schedule due to my dad dying but got back on that fall.

I never really responded to their protocols. My theory is that is not necessarily their fault. I knew that oral abx hadn't worked particularity well for me previously. It only worked moderately well when I first started combo abx treatment through my initial LLMD in 2017. I don't know. I thought maybe they had some magic sauce or something lol. Additionally, my gut, as is common with many who have this chronically, is all jacked up. I do wonder if my gut is too messed up to tolerate oral abx.

As a side not, when you book with them you always see a PA first. My PA, Rachel, was wonderful. My in-person appt and telephone consultations were great with her. She was smart and kind. I went up to DC last year to see her again, but something happened at the last minute and she was unavailable so they squeezed me in 15 minutes after their clinic had closed and Jemsek saw me that day. I don't know if it was because it was a Friday and they had technically already closed, but Jemsek came off as an angry old man. He was rude, didn't listen to me, and was adamant that we had spoke on the phone before even though I had never seen him in person nor spoke to him in my entire life up until that point. I'm gracious so I don't finalize my judgement on one encounter, and, I know he has helped so many and that is what really matters, but, I did not enjoy my visit with him. When I realized the appt wasn't going to go well I just played along, fixed my face, and couldn't wait to get out there which was unfortunate because we had just drove 10 hours to see him. My wife on the other hand could not control her stank face lol.

Anyways, I am not currently in treatment with them. I'm not sure oral abx is the way for me to go right now and I wasn't seeing enough results from JSC to justify the trip and cost. I'm about to try Disulfiram again and maybe some other add-ins later. If there is anything else you would like to know let me know! JSC has it's patients sign a NDA to not post their protocols online, but I could fill you in on the strategy they used with me if you would like through e-mail.

Thanks for that detailed feedback Lyme - i appreciate it

sad to hear that its didn't move you forward significantly

it is such a challenging disease

i tend to agree that a lot of it is down to variability in the host - and not necessarily the failings of the LLMD or clinic

a little surprised to hear how your in person visit went - but also agree that we are all only human - for example - i tend to think of myself as a decent, well intentioned human being - but i know there will have been days in the past where people will have experienced me as anything but.

not to excuse the behaviour - but i have a suspicion Dr J's health is not at all good - and i guess by friday evening after a week of treating lyme patients anyone could be frayed - but i know how disappointing it can be to travel long distance and feel let down by the doctor at the appointment. v frustrating

i have studied all the well known LLMD's read their books etc - and only came across Dr J somewhat later as he does not publish much - but having pieced together his overall concept of the illness and his approach to treatment - it makes about the most sense to me.

i think we are still lacking properly reliable diagnostic tests and drugs effective enough to treat everyone reliably - so there is a lot of one size fits all and guesswork involved

i am interested in what their explanations for the lack of response were - and what they thought the path forward was - so may tap you up by email if that would be OK

thanks again and wishing you all the best with the next trials

hi Garzie, I wondered where you buy your antibiotics from without a prescription?

I know that there is Breakspear clinic in Hertfordshire and TBD clinic in Hove / Brighton, does anyone know anywhere else in England who treat Lyme disease with prescription medications?

Dr Lambert sees patients in Edinburgh now as well as Ireland

Garzie said...
Thanks for that detailed feedback Lyme - i appreciate it

sad to hear that its didn't move you forward significantly

it is such a challenging disease

i tend to agree that a lot of it is down to variability in the host - and not necessarily the failings of the LLMD or clinic

a little surprised to hear how your in person visit went - but also agree that we are all only human - for example - i tend to think of myself as a decent, well intentioned human being - but i know there will have been days in the past where people will have experienced me as anything but.

not to excuse the behaviour - but i have a suspicion Dr J's health is not at all good - and i guess by friday evening after a week of treating lyme patients anyone could be frayed - but i know how disappointing it can be to travel long distance and feel let down by the doctor at the appointment. v frustrating

i have studied all the well known LLMD's read their books etc - and only came across Dr J somewhat later as he does not publish much - but having pieced together his overall concept of the illness and his approach to treatment - it makes about the most sense to me.

i think we are still lacking properly reliable diagnostic tests and drugs effective enough to treat everyone reliably - so there is a lot of one size fits all and guesswork involved

i am interested in what their explanations for the lack of response were - and what they thought the path forward was - so may tap you up by email if that would be OK

thanks again and wishing you all the best with the next trials

Oh, I agree. We are all human and have our days. I know Jemsek has been struggling with his health and I know he has went through much strife in his life with his daughter having cancer etc. Honestly I had only seen him in the Lyme documentary Under Our Skin. I was surprised how old and tired he looked during my appt. I do hope for good health going forward for him. He has done so much to try to alleviate others suffering.

I can only speculate to what reasons I did not respond well:

1. Having been on pretty much every standard oral abx you can think of for Lyme I do wonder about resistance. There has always been lots of talk about how chronic Lyme is harder to treat with abx the longer you have it. Well, I'm coming up on nine years unfortunately lol.

2. Gut issues: I have always had gut issues throughout my life, but since Lyme, and abx treatment they are worse. I think about whether my damaged gut can process all the different capsules and pills well enough. Further speculation for me is fueled by know that Disulfiram worked for me and even though the exact mechanism of how it works is unknown it is known that it is not an antibiotic. So, in theory, it is an antimicrobial that doesn't destroy gut flora indiscriminately.

3. Issues that may have existed before getting sick that were exacerbated by Lyme. For my example, my EBV IGG, IGM, and nuclear antigen numbers have been high since my first LLMD started testing them in 2017. This is another controversial path to go down. I'm not sure if this plays into my chronic illness.

4. Other issues that may have developed since being sick. I can't discount this idea, but, I put it down further on my list of possibilities because when I go back and look at my symptoms from 2017,2018 etc. they are so similair to what they are today. It just seems that my symptoms now have progressed due to time and probably damage. Things like dysautomnia, worsening gut issues, worsening fatigue etc.

Feel free to shoot me an email at [email protected]

3.

Garzie said...
thanks for those thoughts Lymie - it all helps feed the thought process - so i appreciate you taking the time

also nice to see a charitable view of Jemsek and his bad day despite how frustrating it must have been.
i agree - i think he is a good guy - has done a lot to help people. no one is perfect.

ref the lack of response - i speak to a number of people off line who have positive lyme tests but just do not respond as expected to antibiotics - some who do not herx at all or seem to improve despite massive protocols - some who herx at the slightest antimicrobial and have to stop - so its clear its not a one size fits all thing.

i am moving forward - but am constantly amazed at how much stuff i have to do all at one time to make progress - its more than a full time job at present - but since i am moving forward however slowly - what else can you do

my guess is there are variabilities in immune systems that help or hinder recovery - but it does seem clear that there must be blocking other factors that - if not addressed - can prevent recovery. the Jemsek clinic had a video series on these - sleep was a big one - gall bladder issues another - i think hormonal issues for women was another - there were 15 or 20 of them as i recall - but a lot of them did not seem to be obvious - so could each become another rabbit hole to be explored and crossed off - so its easy to see how treatment could become protracted
i am ill nine years this month also - its a long journey - but i do feel i am learning and still improving - all be it a very slow process

in your case the fact that disulfiram nearly worked - gives indication you are at least on the right track with lyme and that improvement is possible - that is huge - i know people who have never seen any improvement with any treatment and are totally lost

i may drop you a line via email

in the meantime - keep up the good fight!

The response to antibiotics does seem all over the place. Personally, my response has been varied at different times of my journey.

* My first antibiotic treatment was standard doxy in Jan 2016. I experienced noticeable herxing along with increased symptoms especially neurological. I was in University at the time and vividly remember going to class, struggling to make it through, leave class, drive to my apartment, shut all the blinds, and get into bed. It was a crazy time for me because the difference between healthy and unhealthy was so recent the dividing line was clear.

* By summer 2016 I had made good progress, but, I still struggled off and on. My PCP kept refilling my Doxy which I knew was not supposed to be the case. It was a tacit admission that I still had symptoms but he didn't know what to do. I pretty much took Doxy PRN that summer into the fall. That summer I actually lived out of a hotel for a month while I traveled for work. I ate bad food and played racquetball almost everyday with co-workers. Looking back at that month is wild. I can't believe I used to be able to tolerate that.

* Heading towards the end of 2016 I worsened considerably despite taking Doxy which culminated in an ER visit. This motivated me to find a LLMD.

* Initial treatment with combo abx through LLMD in early 2017 improved some of my worse symptoms, however, as treatment dragged on throughout the year I plateaued hard.

This is why I wonder about resistance. The mechanism for Disulfiram is not known, but it's theorized it has to do with a metabolite of DSF that possibly disrupts the metabolism of Lyme bacterium. Confounding things even more is I've seen papers/people claiming the DSF might be active against certain viruses, fungi, Babesia.

Great point about all the variables. Those can be overwhelming. Lots of different stuff to try and tackle and it does feel like a full time job. I am glad you are making progress even if slowly. Better than no progress at all. Sorry about not having as many options for doctors to help guide you there over the pond. Hope all goes well for you as well.

Post Edited (Lymie24) : 2/26/2024 12:16:11 PM (GMT-8)

Just got an email from Jemsek, Rachel, Dani, Carrie, Candace and Mary Kate have resigned. Something major must have happened.
I think I will have to find a new provider just in case Jemsek closes up.

Holy crap!!! This is scary. I wish we knew what was going on.

Dr M no longer sees patients from what I heard. Other than Jemsek, Dr H is the only other well-known LLMD I know of. Also, Dr AC, who loski had been seeing, and who was with ISEAI, suddenly stopped practicing.