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Posted 2/27/2024 1:40 AM (GMT 0)
Did you all get the email?
Posted 2/27/2024 1:43 AM (GMT 0)
“Attention JSC patients,

The provider team and clinical manager (Rachel, Dani, Carrye, Candace, and Mary Kate) have made the difficult decision to resign from the Jemsek Specialty Clinic. In the interim, we will be continuing health care maintenance by refilling prescriptions, reviewing labs, answering clinical concerns via triage, and on call service for emergencies.

We are grateful for the opportunity to work as a partner in your care for these many years. We remain committed to serving the Lyme community in our careers going forward.

The bulletin board will be providing any additional updates.

Thank you for your understanding.”
Posted 2/27/2024 1:55 AM (GMT 0)
That's what I received also, email and text.
Posted 2/27/2024 1:55 AM (GMT 0)
I contacted my PA since she has had connection with Dr. J's clinic and all she would tell me was the following:
"Yes, it's a mess up there in DC.
I can't add anything right now."
Posted 2/27/2024 2:26 AM (GMT 0)
I was seriously injured by Cipro there and never recovered. They didn't acknowledge anything happened, and I found out from another doctor that I was the second patient he'd seen floxed there. I asked before taking it whether there had been any adverse reactions, Dr J claimed only one; I'm at least the third. I mulled complaining to the medical board, but decided not to in case it would cause problems for patients who were being helped.
Posted 2/27/2024 7:06 AM (GMT 0)

acarined said...
I was seriously injured by Cipro there and never recovered. They didn't acknowledge anything happened, and I found out from another doctor that I was the second patient he'd seen floxed there. I asked before taking it whether there had been any adverse reactions, Dr J claimed only one; I'm at least the third. I mulled complaining to the medical board, but decided not to in case it would cause problems for patients who were being helped.

Sorry that happened to you!


I told him I wouldn’t take the fluoroquinonones sp?) so he gave me rifabutin

Unfortunately the FDA considers flouroquinones to be safe.
I would blame the FDA.

If you read the list of negative side effects of most antibiotics you’d see a long list too.
Posted 2/27/2024 2:31 PM (GMT 0)
It is no surprise to me that the clinic is a mess. If you don’t particularly appreciate a doctor and position assistance who seem to be extremely liberal with the prescription pad then this clinic is not for you. They take risks with each and every medicine never mind the fact that there are blackbox warnings on some of them. I am happy to see that, the two of us on this message strand survived the reckless use of drugs buy those employed at this clinic. I have posted here before the fact that I suffered from Steven Johnson syndrome after being placed on a drug which had a black box warning. It was a close call, doctors told my husband I was not going to survive. this clinic prescribes medication’s with no regard for the vulnerable population that they are supposedly trying to help.

Please do your research on each and every medication you are prescribed. Please do not take for granted that the doctor prescribing it knows what he or she is doing.
Posted 2/27/2024 3:34 PM (GMT 0)
The FDA has multiple black box warnings on that drug. Dr J either ignored them, or didn't inform me of them; he lied about the number of patients previously injured, and did not acknowledge that I'd been left disabled by the toxicity. As if the entire treatment staff resigning wasn't enough of a red flag, there are two people here who had terrible experiences at that clinic. Stuff happens, and I take responsibility for my decision to take the drug, but that doesn't excuse the incompetence and recklessness in the prescribing.
Posted 2/27/2024 4:41 PM (GMT 0)
According to the NHS the serious side effects if Cipro happen in less than 1 in 100 patients.

https://www.nhs.uk/medicines/ciprofloxacin/side-effects-of-ciprofloxacin/#:~:text=These%20serious%20side%20effects%20can,depressed%2C%20or%20have%20panic%20attacks

I would tend to agree that with the difficulty of treating persistent infection with oral abx it seems that taking a chance with one abx might not be smart. While I know cipro class abx are supposedly strong against Lyme and Bartonella it seems unlikely that success vs. non-success would be dependent on one abx. Personally, they made a protocol for me involving cipro taking it MWF for one week out of a two week protocol. I questioned the use of cipro beforehand and they said to just watch out for tendon issues. I did have to query about the cipro use. They did not give advance warning. I took the cipro for one cycle and then substituted something else. It seems for most people a 5 day course or something is mostly fine but taking it repeatedly seems like playing with fire. I know my previous LLMD wouldn't touch cipro and I would describe him as open minded. It might be that JSC prescribes cipro too freely.

For those who might be left out in left field due to this situation I know from reading Steven Phillips book "Chronic" he also employs a pulsing strategy. He seems more conservative in his approach. I don't know about his success rate, and last I looked him up he seemed expensive, but, he does do the pulsing strategy and seems well educated and lots of clinical experience.

Post Edited (Lymie24) : 2/27/2024 8:48:46 AM (GMT-8)

Posted 2/27/2024 4:46 PM (GMT 0)

MargaritaLyme said...
It is no surprise to me that the clinic is a mess. If you don’t particularly appreciate a doctor and position assistance who seem to be extremely liberal with the prescription pad then this clinic is not for you. They take risks with each and every medicine never mind the fact that there are blackbox warnings on some of them. I am happy to see that, the two of us on this message strand survived the reckless use of drugs buy those employed at this clinic. I have posted here before the fact that I suffered from Steven Johnson syndrome after being placed on a drug which had a black box warning. It was a close call, doctors told my husband I was not going to survive. this clinic prescribes medication’s with no regard for the vulnerable population that they are supposedly trying to help.

Please do your research on each and every medication you are prescribed. Please do not take for granted that the doctor prescribing it knows what he or she is doing.

Ugghhh I'm sorry that happened to you. I was prescribed a drug that had a super small chance of Steven-Johns syndrome and passed on taking it after I read up about that syndrome. I wasn't convinced the drug would do much for me either. The syndrome sounds awful. I'm glad you are okay. The drug wasn't lamotrigine by any chance was it?
Posted 2/27/2024 6:56 PM (GMT 0)
very sorry to hear of the people that were damaged by antibiotics

i guess its a lesson to all of us to be advocates for our own health and ultimate decision maker on what we put into our bodies.

from the doctors point of view - its very challenging for them also - all of the drugs that are effective for lyme have side effects - some of which are serious - and because we do not have specific drugs targeting these infections they often feel forced to use drugs that, while they may be more effective, may also have more risks attached and could render a small proportion of patients worse off rather than better.

this is actually the case with all pharmaceuticals - and even herbal or so called natural treatments - none are entirely risk free.

for example - if we are unlucky - we could be an unlucky one that has a severe reaction to something simple like minocycline or get C-diff even from an apparent low risk antibiotic like doxycycline and have life changing effects. or we could get neuropathy from any antibiotic due to herx reactions.

the other side of the equation is these chronic infections can and do kill people in the long run - and so not treating - or treating inadequately is also a serious risk - and so the math on what is the correct balance of risk is not a black and white picture at all. for this reason it really needs to be an informed decision by doctor and ultimately patient

therefore i would expect doctors to make people aware of the risks on both sides of these decisions as a part of that process - but suspect time constraints mean that this doesn't always happen

still - now matter how justifiable the equation - if you are one of the few that are damaged - then that certainly is crapty - i feel for you

i hope you find a way forward
Posted 2/27/2024 10:48 PM (GMT 0)
Take a look at the side effects for minocycline:

“Serious side effects of Minocycline
Along with its needed effects, minocycline may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur while taking minocycline:

Incidence not known

Black, tarry stools
blistering, peeling, or loosening of the skin
blood in the urine or stools
blurred or double vision
bulging soft spot on the head of an infant
chest pain, possibly moving to the left arm, neck, or shoulder
confusion
diarrhea
dizziness or lightheadedness
eye pain
fast heartbeat
general feeling of discomfort or illness
general tiredness and weakness
hives, itching, or skin rash
joint or muscle pain
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
loss of appetite
nausea or vomiting
red skin lesions, often with a purple center
severe headache
severe stomach pain
sores, ulcers, or white spots on the lips or in the mouth
troubled breathing
unusual bleeding or bruising
upper right abdominal or stomach pain
yellow eyes and skin”
Posted 2/28/2024 1:45 AM (GMT 0)
My PA told me that taking Cipro pulsed one week out of a month, it doesn't seem to be too risky. That's basically how I'm taking it now. And my PA is not really one who likes to take big risks in treatment or at least doesn't like to go out of her comfort zone with abx/meds she's not real familiar with.

Post Edited (JMF84) : 2/27/2024 5:49:00 PM (GMT-8)

Posted 2/28/2024 12:47 PM (GMT 0)
did someone edit my post??

it normally says "edited by xxxx" if they have - but there is nothing in this case and yet the text definitely changed .....🤷‍♂️
Posted 2/28/2024 12:57 PM (GMT 0)
No idea, Garzie. What was changed?
Posted 2/28/2024 1:45 PM (GMT 0)
Wasn't me! When I edit, I always leave a note saying why. That's really weird!
Posted 2/28/2024 1:47 PM (GMT 0)
nothing major -

i had written "if you are one of the few that are damaged - then that certainly is crapty" indicating my strength of feeling on the matter

but it now reads "if you are one of the few that are damaged - then that certainly is crapty"

no real objection to anyone removing expletives - even relatively mild ones such as these - if it offends them

just odd that there is no message letting us know its been moderated
Posted 2/28/2024 1:48 PM (GMT 0)
ah - i have answered my own question -

the site seems to automatically filter and convert certain words into others - as seen repeated above - i had written written a word beginning with s - with two t's and a y in it - referring to something that stinks
Posted 2/28/2024 5:01 PM (GMT 0)
I saw this clinic from 2015 through 2022. For the past 1.5 years, I have been with a different LLMD. First thing my new doctor had me do was a complete co-infection Igenex panel (testing can be unreliable, I know). After all these years, I tested positive for Bart, Rickettsia, and TBRF. My new doctor has treated me specifically targeting these co's with continuous abx. I should have gone this route years ago and not pulsed for co's. I now have one symptom remaining. I hope to post my story soon.
Posted 2/28/2024 5:29 PM (GMT 0)

Fronton said...
I saw this clinic from 2015 through 2022. For the past 1.5 years, I have been with a different LLMD. First thing my new doctor had me do was a complete co-infection Igenex panel (testing can be unreliable, I know). After all these years, I tested positive for Bart, Rickettsia, and TBRF. My new doctor has treated me specifically targeting these co's with continuous abx. I should have gone this route years ago and not pulsed for co's. I now have one symptom remaining. I hope to post my story soon.

Glad you are improving with the new Doc!
It’s been a long haul for you!
Posted 2/28/2024 5:45 PM (GMT 0)
Yikes! This is not good given he has had problems with his clinic in the past (I remember seeing it in Under our Skin). Hope things get resolved for the patients under his care. GIrlie, good thing you are only on maintenance now and pretty much in remission! Although I know you had a good experience there. But also, everyone is different, some cases are positive, some are negative.
Posted 2/28/2024 9:39 PM (GMT 0)
Thanks Girlie!
Also, it’s official now. The clinic is closing.
Posted 2/28/2024 11:42 PM (GMT 0)
Doesn’t anyone on the forum know why he is closing?

Is it the long covid?
That doesn’t make sense - he could assign one of his NP’s to keep it open..no?
Posted 2/29/2024 12:12 AM (GMT 0)
Here's something I found on Reddit that allegedly contains a message shared by Dr. Jemsek's family:

https://www.reddit.com/r/lymedisease/comments/1b0waoq/jemsek_clinic

In case the post gets deleted or removed, here's what the alleged letter states:

"Attention JSC patients,

We (the Jemsek family) have decided it is necessary to close our father’s practice, the Jemsek Specialty Clinic. Please rest assured however, that we are working behind the scenes with the providers to come up with a plan to potentially reopen the clinic under their ownership. The providers are dedicated to their patients and we feel confident they will be able to carry on Dr. Jemsek’s legacy.

The providers are continuing to offer health maintenance to help with this transition. This will include refilling prescriptions, monitoring labs, answering clinical concerns via triage, and supplying patients with their medical records. The clinic will continue to provide these services until 3/19/2024.

Please be advised, it is very likely there will be a time where the clinic is closed while undergoing this transition. We advise that you seek care in the interim with your primary care provider as needed.

Please stay tuned for directions on how you may begin to establish care with the new clinic.

Thank you, The Jemsek Family"
Posted 2/29/2024 2:08 AM (GMT 0)
If that information The Dude found on reddit is accurate, Dr J must be having really serious health issues, since the letter is from his family rather than from him. Praying for his health and well-being and that all will end well with the clinic and the patients who need them.🙏
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