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Posted 4/20/2022 4:38 PM (GMT 0)
Does anyone have experience and SUCCESS with Dr J in DC. Im thinking about going to him. How long was your treatment with him and what makes him different the any other prescribing antibiotics? Any insight will help!!
Posted 4/20/2022 4:48 PM (GMT 0)
Girlie sees him and has had a successful treatment after what seemed like a difficult case that had not responded fully to previous LLMD's treatments

his treatments philosophy seems more comprehensive than most
-several distinct phases
-different objectives for each phase
-individualised timing of phases and protocols based on feedback

he is an unusual character - talks in metaphors and similes - but once you get past that and tune into what he is trying to say the guy talks a lot of sense -

worth watching his YouTube / Facebook videos if you haven't already
Posted 4/20/2022 5:15 PM (GMT 0)

bro123 said...
Does anyone have experience and SUCCESS with Dr J in DC. Im thinking about going to him. How long was your treatment with him and what makes him different the any other prescribing antibiotics? Any insight will help!!

I would consider myself a success.

I previously was treated (abx) with a LLND here in Canada.
I did lose a lot of symptoms but was still sick after completing his protocols - that was from 2014 to 2017.
Still couldn’t work and lead a normal life.
Went to two (or was it three) other LLND’s without success.

In Feb 2018 I decided to travel to the US (I’m Canadian) to see who I considered to be one of the two top llmds. I had seen several video clips on him and was impressed.

Started in Feb, 2018 and did his protocols until approx March of 2019
This covered Babesia, Bartonella and Lyme.

Then was put on Maintenance since then.
I now take abx for 4 days per month. (One week on three weeks off.)
And I am now stretching the weeks off. I will sometimes do 4 weeks off.
It’s been a long haul and am tempted to just totally stop but I do not want to backslide… so I am gradually going to do more off weeks between cycles.
Posted 4/20/2022 5:36 PM (GMT 0)
I went to DC in February to establish with the Jemsek clinic. Be aware your first visit has to be in person and can be quite long. They get a full history on you and do a physical. Also, be aware that your first visit will be with a PA or a NP. They are trained by Jemsek and all of your information flows through him. He is aware of your case. My understanding is when you go back to DC you can decide to see your initial NP or PA or see Jemsek. I've been impressed with the PA I saw and wouldn't mind continuing with her, however, I probably will eventually ask to see Jemsek.

They have a form that must be signed which states their protocols can't be shared online. I can't give my exact protocol, but they make it well known that they believe in pulsing and they believe that Babesia is important. So far it has seemed to me that they are pretty streamline. They pulse and they go after babesia. I don't know how much they will tailor treatment right off the bat.

After your first visit they put you on a "stabilization" plan. This seems to be customized to your symptoms/situation. You might get meds for pain/inflammation, nerve related issues, sleep issues, GI problems might trigger them to ask for a HIDA scan to check gallbladder function.

Currently I am on a MWF plan with 2 weeks on 1 week off. I can say I have noticed, perhaps, a little bit of benefit after completing one cycle. On my own, I've added in monolaurin and that has seemed to cause some neuro herxes.

I went to them because I felt my treatment had become non-effective and stagnant with my previous LLMD. My previous LLMD is a good person and a good doctor, but I felt I needed a different perspective. Jemsek is one of the more renowned LLMDs. We will see what happens.

As far as cost, the first visit is dumb expensive (890$...what a weird number lol). After that, 4 - 6 weeks later, a phone consult is 490$. Going forward visits are 390$ which was in-line with what I was paying for my previous LLMD (350$) in a much cheaper cost of living area.
Posted 4/20/2022 5:47 PM (GMT 0)
Great to hear girlie, when did you notice improvements after being on his protocol? I am really at a dead end, do you reccommend me going? Also no knockdown to the PAs, but are they as qualified as dr j himself?
Posted 4/20/2022 6:01 PM (GMT 0)
Lymie24, I hope you have success in your healing and thank you for your input and keep us updated. Did the doctor say his success rate for his protocol and how often people get into remission?
Posted 4/20/2022 6:08 PM (GMT 0)

bro123 said...
Great to hear girlie, when did you notice improvements after being on his protocol? I am really at a dead end, do you reccommend me going? Also no knockdown to the PAs, but are they as qualified as dr j himself?

I believe it was several months in - hard to say because I herxed very bad on the Persisters/Bart protocols and after that is when I started to feel like I had improved.
And even on maintenance I have improved. It may be just it has taken time to heal from the Persisters treatment… not sure.
But I had the confidence to go back to work after over 5 years off due to horrid symptoms.

The PA’s and NP’s are trained by Dr J and follow his template.
I know several people who stayed with their PA/NP when offered to see DrJ as they felt like they were in good hands.
Posted 4/20/2022 6:41 PM (GMT 0)

bro123 said...
Lymie24, I hope you have success in your healing and thank you for your input and keep us updated. Did the doctor say his success rate for his protocol and how often people get into remission?

Thank you and I will try to keep everybody updated! Unfortunately, no, I didn't ask about successes or remission. "Success" can be a tough thing to define with this illness. If remission is defined as no more symptoms I'll gladly take that lol!!!

The closest I got to "success" after being ill for several years was Disulfiram.

Post Edited (Lymie24) : 4/20/2022 2:23:38 PM (GMT-6)

Posted 4/20/2022 7:49 PM (GMT 0)
If I were to do IV therapy from him, would it be possible to do it without a picc line? Im pretty close to DC so I was wondering if I could just drive to get an infusion if I had to do IV. Also can I do my initial consultation over the phone or teledoc?
Posted 4/20/2022 8:18 PM (GMT 0)
Initial consultation has to be in person. It's a fairly long appointment. It can run 2-3 hours. They get your full history and do a physical.

I'm not sure about IV abx. I'm on orals. I made a thread a couple months ago about Jemsek. There were users in that thread that did IV that I thought were informative. I'll link to that thread so you can read it.

https://www.healingwell.com/community/default.aspx?f=30&m=4281016

Post Edited (Lymie24) : 4/20/2022 2:23:54 PM (GMT-6)

Posted 4/20/2022 8:43 PM (GMT 0)

bro123 said...
If I were to do IV therapy from him, would it be possible to do it without a picc line? Im pretty close to DC so I was wondering if I could just drive to get an infusion if I had to do IV. Also can I do my initial consultation over the phone or teledoc?

Unfortunately it isn't that simple. He does a central line. You go in once a month for an appt and a new round of abx and new protocol. They do a test dose there to make sure you dont react. For me I had a home health care nurse once a week (covered by insurance) who took care of the central line dressing. You can learn to do that yourself but it is hard.

I am not sure if you are asking if you can just have them do the infusions. I dont know if they would do that but it would cost a fortune.

I really doubt he would do initial consult over phone.
Posted 4/20/2022 8:54 PM (GMT 0)
No initial consult over phone.

And you have to be near to do IV abx. I know I could not do IV abx because there was no way I could fly 6 hours there each time there was an abx change.
Posted 4/20/2022 9:03 PM (GMT 0)
There is a woman from Germany there. She had been treating there for 3 years and her doctors sent her to him. She moved and lives in an apartment with her mother and goes in once a month.
Posted 4/20/2022 9:09 PM (GMT 0)
So I’m an IV patient with Dr. Jemsek, my symptoms got really extreme before coming to him and he decides if people qualify for it based on symptoms and treatment history.

I had been to numerous LLMDs before him and his knowledge and experience are so far beyond anyone else I had seen before him. IV is a very intense commitment but it is for the sickest people, I know of people healing on orals and IV with the clinic. I’m still in the trenches of treatment right now but after my whole journey through Lyme docs, I wouldn’t trust my Lyme treatment anywhere else. So I’d absolutely recommend if you’ve been struggling for a while. I’ve even asked myself what the heck was I doing not coming here for so long, should’ve came so much sooner and gotten the proper help. This will sound rude but 95% of LLMDs don’t seem to be treating properly, just my opinion

I have seen noticeable improvements but I’m not done with the IV protocol yet and herxing gets intense with the proper treatment that they do, the pulsing and on/off weeks help you see the light at the end of the tunnel.

Post Edited (ltc1225) : 4/20/2022 3:19:50 PM (GMT-6)

Posted 4/20/2022 10:11 PM (GMT 0)
Itc1225, how long have you been treating and what percent would you put yourself after Dr. J treatment?

Girlie, does he start you on treatment right away?

I got an appointment with Candace who is the nurse practitioner. I hope she is good. Im really banking on this to work
Posted 4/20/2022 10:16 PM (GMT 0)

bro123 said...
Itc1225, how long have you been treating and what percent would you put yourself after Dr. J treatment?

Girlie, does he start you on treatment right away?

I got an appointment with Candace who is the nurse practitioner. I hope she is good. Im really banking on this to work

They stabilize you before starting treatment, I’m almost 5 months into IV treatment (which requires more months to complete the protocol), I don’t think I can really give you a percentage. IV is extremely intense, on an off week I’ll feel okay and then the weeks I’m treating again I feel like death or vice versa. it’s something you have to fully see through to get the results. Takes a while of tough treatment to get to those good days. Realized that after failing with other LLMDs improper treatments. It’s daunting but I’ve talked to plenty of people who have finished IV and are in remission. But I have also heard of many people getting better orally and it’s much more affordable
Posted 4/20/2022 10:34 PM (GMT 0)
I also just made the jump to Dr J. So I can update this thread if desired.

To give you an idea: I am 34. I believe I was born with bart or got it in early childhood. I also got a tickbite in 2017 - and I have positive babesia FISH and two band Lyme Igenex western blot (39,41). TLAB bart positive. Also high titres for mycoplasma. I have many symptoms: most notable are severe cognitive impairment & depression & and severe inflammation, pain, and fibrosis all throughout my connective tissue (muscles, skin, tendons, fascia). Basically bedridden tho I can make the occasional errand and cook a meal. Worked with Dr M for 1 year doing his standard protocol and got much worse. Did another year or so of other standard lyme & babesia & bart protcols. I herx monstrously to many abx, I also take IVIG for PANS/AE. I believe am a pretty 'severe case' though I am sure there are many worse off.

I turned to Dr J for a different approach. I am drawn to pulsing bc I just flare continuously on constant antibiotics and do more damage to my tissues without relieving symptoms. Many people say 'don't pulse bart treatment' but clearly there are success stories with Dr J and Dr SP.

So far he has me in 'stabilization' by titrating up lamotrigine and also adding the supplement PEA. A Few other recommendations, basic stuff. I will start babesia treatment first I believe and then Jemsek is on the fence ab whether he thinks I should do IV abx, which I am open too.

Girlie - I know you had success treating stubborn bart with Dr J. Did you have severe cognitive issues or depression?Was your infection deeply embedded into skin and muscles and tendons? Sometimes I worry that the infection is so disseminated that all the herxing required to remove it will cripple me (the fibrotic changes everywhere are mainly a result of the intense herxing from claritho + rifampin).
Posted 4/20/2022 11:01 PM (GMT 0)

bro123 said...
Itc1225, how long have you been treating and what percent would you put yourself after Dr. J treatment?

Girlie, does he start you on treatment right away?

I got an appointment with Candace who is the nurse practitioner. I hope she is good. Im really banking on this to work

No, there is a stabilizing period first - they want to try to fix issues - like sleep , pain etc.
I can’t remember if that was just for a month??
I think they prescribe the abx at that time tho - but want you to stabilize/correct things first.
Posted 4/20/2022 11:18 PM (GMT 0)

Lymie24 said...
Initial consultation has to be in person. It's a fairly long appointment. It can run 2-3 hours. They get your full history and do a physical.

I'm not sure about IV abx. I'm on orals. I made a thread a couple months ago about Jemsek. There were users in that thread that did IV that I thought were informative. I'll link to that thread so you can read it.

https://www.healingwell.com/community/default.aspx?f=30&m=4281016

Yes, the physical is important.
He will palpate your liver (to see if it’s swollen) - that can indicate Babesia. You will get pulse and blood pressure sitting and standing - that showed I had POTS (dysautomnia)
- Records your height and weight
- has you try to walk a straight line (I had to walk heel to toe) - I wasn’t good at that.
- hand to nose touch

There was a questionnaire and a series of questions were asked. After I answered - my husband was asked same question.

For example - “From 1-10 how is your memory - 1 being poor and 10 being good”
Then after I answered - my husband was asked the same question.
I cried a few times when my husband rated me poor on memory and cognitive questions.
I think I thought I was hiding how bad I was. It embarrassed me to be rated so low on some of the questions. Not so much the physical - but the brain function ones.
My husband always relied on my good memory - and I felt unworthy. It’s still affecting me.
- Tears are running down my face as I post this.
My memory has improved but it’s still not as good as it was pre Lyme.
Going back to work was a daunting endeavour. Even with the easiest jobs - you need to remember what you have to do and when to do it.
Posted 4/20/2022 11:28 PM (GMT 0)
Jason “ Girlie - I know you had success treating stubborn bart with Dr J. Did you have severe cognitive issues or depression?Was your infection deeply embedded into skin and muscles and tendons? Sometimes I worry that the infection is so disseminated that all the herxing required to remove it will cripple me (the fibrotic changes everywhere are mainly a result of the intense herxing from claritho + rifampin).“

I did have cognitive/brain issues - yes. Short term memory was horrible.
Doing math in my head - couldn’t do it anymore.
Even handling the household finances - paying bills etc - was sketchy for awhile.
A few cheques came back because I didn’t sign them…
I paid one bill twice… etc.
I did my best to hide this from my husband because it was so embarrassing.

It affected my muscles too.
I lost a ton of weight - and I had no muscle tone. I was quite athletic prior to getting Lyme… so the change was obvious. Friends and family were shocked.

I had depression and anxiety for many months too.
Cried every day for months.
Posted 4/21/2022 2:18 AM (GMT 0)
Girle - thanks for sharing and reliving that pain for my sake.

I am hopeful but scared of the path ahead. I also have this autoimmune encephalitis component - Jemsek dissuaded me from continuing high dose IVIG, but said he would be fine with it if I noticed benefit. He said it could interfere with my own immune systems recovery to regain control of these infections. I will continue it for at least a few more months. So many different views on this infection/autoimmune connection.
Posted 4/21/2022 4:26 AM (GMT 0)
JaSon, did you talk to Dr. J himself? How were you able to see him because they made me see the NP
Posted 4/21/2022 6:49 AM (GMT 0)

JaSon2233 said...
Girle - thanks for sharing and reliving that pain for my sake.

I am hopeful but scared of the path ahead. I also have this autoimmune encephalitis component - Jemsek dissuaded me from continuing high dose IVIG, but said he would be fine with it if I noticed benefit. He said it could interfere with my own immune systems recovery to regain control of these infections. I will continue it for at least a few more months. So many different views on this infection/autoimmune connection.

You’re welcome!

I hope going to the Jemsek clinic is your answer.
Fingers crossed!
Posted 4/21/2022 8:41 AM (GMT 0)
good luck to both of you guys with Dr J - Bro and Jason !

for what its worth - i think all chronic bart and lyme patients have the bacteria deeply distributed in all tissues.

the differences in symptoms are i think largely driven by the variable host response - we know that humans are quite variable in immune response - and this is the largest variable.

i like that Dr J - thinks and talks about the immune system in equal part to the drugs - he acknowledges how much this has an effect on symptoms and outcome.

i know its a long haul - but do keep us posted of how you get on
Posted 4/21/2022 1:17 PM (GMT 0)

JaSon2233 said...
I also just made the jump to Dr J. So I can update this thread if desired.

To give you an idea: I am 34. I believe I was born with bart or got it in early childhood. I also got a tickbite in 2017 - and I have positive babesia FISH and two band Lyme Igenex western blot (39,41). TLAB bart positive. Also high titres for mycoplasma. I have many symptoms: most notable are severe cognitive impairment & depression & and severe inflammation, pain, and fibrosis all throughout my connective tissue (muscles, skin, tendons, fascia). Basically bedridden tho I can make the occasional errand and cook a meal. Worked with Dr M for 1 year doing his standard protocol and got much worse. Did another year or so of other standard lyme & babesia & bart protcols. I herx monstrously to many abx, I also take IVIG for PANS/AE. I believe am a pretty 'severe case' though I am sure there are many worse off.

I turned to Dr J for a different approach. I am drawn to pulsing bc I just flare continuously on constant antibiotics and do more damage to my tissues without relieving symptoms. Many people say 'don't pulse bart treatment' but clearly there are success stories with Dr J and Dr SP.

So far he has me in 'stabilization' by titrating up lamotrigine and also adding the supplement PEA. A Few other recommendations, basic stuff. I will start babesia treatment first I believe and then Jemsek is on the fence ab whether he thinks I should do IV abx, which I am open too.

Girlie - I know you had success treating stubborn bart with Dr J. Did you have severe cognitive issues or depression?Was your infection deeply embedded into skin and muscles and tendons? Sometimes I worry that the infection is so disseminated that all the herxing required to remove it will cripple me (the fibrotic changes everywhere are mainly a result of the intense herxing from claritho + rifampin).

Wow, your situation sounds a bit similar to mine. I'm 37. At times I can be more active and run some errands and at other times, I don't feel like leaving the house. The herxing can be so terrible, you wonder if you can make it to recovery. I have also gone backward on protocols but then made improvement on others. I think mine might be severe Bart and Babs infections that take turns being dominant, so I hit one and the other comes out and visa versa. I have been making very slow improvement trying various ABX protocols. Think I'll be going back to targeting Babs again soon after a break now. I hope you can find help!
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