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Autoimmune Encephalopathy secondary to infections disease conference Feb 9-11

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Posted 1/25/2022 1:34 AM (GMT 0)
My neurologist/LLMD, Dr. K is one of the co-chairs of this event and is presenting himself on the last day. As folks such as DCD1203 can attest, Dr. K may have the best understanding of immune system role in the complex known as "chronic lyme". I spoke to him today and he made me aware of this Medical conference.

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Join us virtually February 9-11, 2022, for a landmark leadership conference sponsored by Georgetown University and The Foundation for Total Recovery.

Guest speakers from around the world will include distinguished specialists from Oxford, Columbia, Duke, and even the leading medical center in the Middle East—Sheba Medical Center in Israel. Plan to join us, as we have an exciting three days scheduled.

This conference is a critical and long overdue rethink of how we approach ME/CFS, neuropsychiatric disorders, PANS/PANDAS, chronic Lyme, fibromyalgia, and even long-haul COVID-19.

We believe the treatment of these diseases needs to be viewed through a different lens—that of immune dysregulation resulting in neuroinflammation. We have to give up our belief that these are standalone diseases—especially if we want the best outcomes for patients.



This is a radical paradigm shift, but we need it badly. We hope as practitioners, patients and caregivers you will join us for this discussion as we discuss the future of diagnostic, treatment and recovery for these patients.



The goals of this conference are three-fold:



First, we will explore the role of genetic and epigenetic factors that predispose an individual for immune dysregulation.



Secondly, we will analyze the current evidence for infection-mediated immune dysregulation as it relates to Fibromyalgia, ME/CFS, neuropsychiatric illnesses, Post-Lyme syndrome, PANS/PANDAS and the post COVID-19 long haul syndrome.



Thirdly, we will examine current and new diagnostic testing procedures and treatment options for these conditions.

LINK:
https://inevent.com/en/FoundationforTotalRecovery-1625240794/94-FoundationforTotalRecovery-1639074062/hotsite.php

Cost: $69
Posted 1/25/2022 1:50 AM (GMT 0)
Dr. K will be presenting at 10am on Fri the 11th "Treatment for AEIE-Lessons Learned from Lyme Disease"

From the description:


It is estimated that about 10-20% of patients who contract Lyme disease will develop a chronic illness of autoimmune nature, some with symptoms consistent with AEIE. This can happen even if the infection is treated appropriately and in a timely manner. We named the neuropsychiatric condition that develops after Lyme disease - ANDAL (Autoimmune Neuropsychiatric Disorder Associated with Lyme disease).
Demonstrating antibodies targeting different cerebral antigens confirms the autoimmune nature of this condition and supports immuno-modulatory treatment approaches.
Discontinuing all anti-microbial agents and initiating weekly Intramuscular Benzathine Penicillin-G, 600,000 -1,200,000 Million units, can result in dramatic improvement within a few weeks of treatment in some patients. If there are prominent neuropathic symptoms or if there is no response to Benzathine Penicillin -G, immunoglobulins, intravenously or subcutaneously are prescribed. Other immune modulatory approaches as well as correcting cytokines imbalance will be discussed.
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I can attest that this has worked for me for the past 2 years (I inject every 5 days since I have an end of dose effect doing every 7) minus the vasovagal setback I had 2 weeks ago when I was mixing antimicrobial buhner herbs and other supplements with my usual Bicillin injections. Other than my dysautonomia/autonomic neuropathy symptoms (mild pots, some exercise intolerance etc), everything else cleared up >90%

Post Edited (Solaris719) : 1/24/2022 6:54:46 PM (GMT-7)

Posted 1/25/2022 1:51 AM (GMT 0)
I registered for the conference. Definitely curious about treatment options for the immune dysregulation. This has to be a crucial component for a subsect of chronic lyme patients who don't just get better with long term antibiotics.

Interesting they have Bruce Patterson. His treatment has been a major let down for chronic lyme patients. I honestly see this guy as an opportunist at best and blatantly dishonest huckster at worst. You hear him talk about his success rates treating chronic lyme/post-lyme on podcasts and videos. There was like 5% of people in that FB group who benefited from his therapy. One of my friends got a small decrease in inflammation that enabled him to swim across his pool for the first time in years, though he was still mostly bedridden dealing with horrid encephalopathy. Patterson was on this podcast the next day massively exaggerating my friends story (who no longer takes his treatment, like almost everyone I talked to in the FB group).

There are a couple other people on there who have horrible online patient reviews and bad repuations within the lyme community. Def a couple quality people. Surprised some of the more accomplished in this speciality like Dr Frid or Dr Bock are not involved.
Posted 1/25/2022 1:51 AM (GMT 0)
Hmm interesting point of view, but how would that explain all the people who got better with antibiotics and/or other methods of reducing the pathogen load?

Not saying we shouldn't address the immune system by the way. It's definitely playing a big role.

But I don't think it's the entire picture.
Posted 1/25/2022 1:58 AM (GMT 0)
Yah its 100% not the whole picture. Honestly, its the type of assertion that makes you just shake your head.
Posted 1/25/2022 2:05 AM (GMT 0)

RainyCloud said...
Hmm interesting point of view, but how would that explain all the people who got better with antibiotics and/or other methods of reducing the pathogen load?

Not saying we shouldn't address the immune system by the way. It's definitely playing a big role.

But I don't think it's the entire picture.

It's an estimated 10-20% subset of the Chronic Lyme population so I don't think it's targeting the much larger population of those who cured themselves with other methods based on targeting pathogens. It's for folks like myself (I treated early and aggressively and still didn't reach nirvana) who reached a point where antibiotics and antimicrobials no longer produced a benefit or in fact started worsening our symptoms.

I think estimating that 1 out of every 5 chronic lyme patients is actually suffering from autoimmune dysfunction and not pathogens is a reasonable estimate. All I can tell you is the bicllin works - both for targeting pathogens with active infections and as a beneficial immunomodulary monotherapy treatment which Dr. K himself says he cannot explain in perfect scientific terms but has had excellent results for many of his chronic pateints.
Posted 1/25/2022 2:07 AM (GMT 0)
Is there a hint as to who dr K is? Kind...rer?
Posted 1/25/2022 2:08 AM (GMT 0)

JaSon2233 said...
I registered for the conference. Definitely curious about treatment options for the immune dysregulation. This has to be a crucial component for a subsect of chronic lyme patients who don't just get better with long term antibiotics.

Interesting they have Bruce Patterson. His treatment has been a major let down for chronic lyme patients. I honestly see this guy as an opportunist at best and blatantly dishonest huckster at worst. You hear him talk about his success rates treating chronic lyme/post-lyme on podcasts and videos. There was like 5% of people in that FB group who benefited from his therapy. One of my friends got a small decrease in inflammation that enabled him to swim across his pool for the first time in years, though he was still mostly bedridden dealing with horrid encephalopathy. Patterson was on this podcast the next day massively exaggerating my friends story (who no longer takes his treatment, like almost everyone I talked to in the FB group).

There are a couple other people on there who have horrible online patient reviews and bad repuations within the lyme community. Def a couple quality people. Surprised some of the more accomplished in this speciality like Dr Frid or Dr Bock are not involved.

To be honest, I'm only familiar with Dr. K and not any of other speakers. I also don't think they're saying this is the entire picture, just that there's a subset of patients who are suffering from autoimmunity versus pathogen driven illness.
Posted 1/25/2022 2:09 AM (GMT 0)
His text is referring to 10-20% of Lyme patients who then develop chronic lyme. That is the correct way to interpret it i believe. It this the line you see in 95% of academic literature. Thats why I thought he was saying it was the whole chronic lyme picture.

I think its pretty clear to most patients that we have a very heterogenous mix of problems. Some its pure infection thats highly diseminated, some its a mix of infections, some its an autoimmune syndrome, some its another type of immune dysregulation, some lingering damage, some maybe bacterial debris stuck in the body that can't be cleared and is stimulating immune system, probably other problems as well.

I just find it incredibly annoying when someone comes out claiming they have the solution to all of us, when its clear to us that certain things work for others and are a disaster for others.

Post Edited (JaSon2233) : 1/24/2022 7:14:52 PM (GMT-7)

Posted 1/25/2022 2:11 AM (GMT 0)

JaSon2233 said...
One of my friends got a small decrease in inflammation that enabled him to swim across his pool for the first time in years, though he was still mostly bedridden dealing with horrid encephalopathy. Patterson was on this podcast the next day massively exaggerating my friends story (who no longer takes his treatment, like almost everyone I talked to in the FB group).

Wow, I didn't know that was your friend. I remember that podcast. Yeah he definitely didn't mention that he's still bedridden.
Posted 1/25/2022 2:11 AM (GMT 0)

lyme guy16 said...
Is there a hint as to who dr K is? Kind...rer?

He is one of the co-chairs of the conference.

Dr K, a Board-Certified Neurologist, practices at MedAhead Inc. where he sees patients with protracted tick-borne diseases among other neurologically compromised patients. He was recently recognized by Marquis Who’s & Who Top Doctors for dedication, achievements, and leadership in neurology. Dr. K attended the Sackler School of Medicine at Tel Aviv University, where he earned an MD in 1976 with Magna Cum Laude. He went on to complete a residency in Internal Medicine at Sheba Medical Center in 1980, a residency in Neurology at Tel Aviv Medical Center in 1984, a fellowship in medical hypnosis at the University of Haifa in 1985, a fellowship in Clinical Neurophysiology at the Cleveland Clinic in 1988 and a fellowship in Clinical Epilepsy at the Yale School of Medicine in 1989. Dr. K additionally holds numerous certifications in his field, including an Israeli specialist’s Certificate in Neurology, which he earned in 1985 and American Board certification of Psychiatry and Neurology he earned in 1992. He was certified as a Diving Medical Officer in 1976 and a Medical Officer with the Israeli Academy of Military Medicine. He is in solo practice with MedAhead, Inc., in Orange, Connecticut since 2004. Dr. K has been the president of this company since 1995 and has also been a consulting neurologist and Assistant Clinical Professor of Neurology at Yale University School of Medicine from 1993 to 2013. He was a partner in Neurology Associates of Norwalk PC, from 1993 to 2002. During those years he served as the Medical Director of the Epilepsy Foundation of Connecticut. From 1993 to 2002, Dr. was the Director of the Epilepsy Center, Co-Director of Diving Medicine and Associate Director of Sleep Medicine – all at Norwalk Hospital. From 1996 to 1998, he served as the medical director of Telemedicine Consultants America, LLC. In recognition of his accomplishments in his field, Dr. K has been the recipient of numerous awards and honors. He won the Merritt Putnam Fellowship of the American Foundation in Epilepsy in 1988, the William Gowers Epilepsy Fellowship of Abbott Pharmaceuticals in 1989 and the Hans Berger Epilepsy Fellowship of the American EEG Society in 1990. From 2002 to 2014, he was listed among the Top Doctors in the New York Metro Area with Castle Connolly, and in 2010 and 2013 he was named Most Compassionate Doctor by Patients’ Choice. In 2008, 2010, and 2012, he was awarded Best Doctor by Patients’ Choice, among myriad further accolades. In 2016 he opened a new Company, DK Electronics, LLC, to promote an FDA approved medical device he invented – FlowKeepers® – that helps prevent Deep Vein Thrombosis (DVT). In the past 5 years Dr, K ran an IRB approved clinical trial examining the safety and efficacy of intra thecal Immunoglobulin administration to patients with Alzheimer’s disease. A treatment that shows promise in a variety of neuroinflammatory conditions. In the coming years, he intends to experience continued growth and success with his medical device, his research and clinical trials.
Posted 1/25/2022 2:15 AM (GMT 0)

lyme guy16 said...
Is there a hint as to who dr K is? Kind...rer?

K..z
Posted 1/25/2022 2:43 AM (GMT 0)

JaSon2233 said...
His text is referring to 10-20% of Lyme patients who then develop chronic lyme. That is the correct way to interpret it i believe. It this the line you see in 95% of academic literature. Thats why I thought he was saying it was the whole chronic lyme picture.

I think its pretty clear to most patients that we have a very heterogenous mix of problems. Some its pure infection thats highly diseminated, some its a mix of infections, some its an autoimmune syndrome, some its another type of immune dysregulation, some lingering damage, some maybe bacterial debris stuck in the body that can't be cleared and is stimulating immune system, probably other problems as well.

I just find it incredibly annoying when someone comes out claiming they have the solution to all of us, when its clear to us that certain things work for others and are a disaster for others.

Calm down, he's not saying that. He's a very intelligent and caring dr. He's on our side. Guy is a national treasure, and I mean that. As Solaris can attest, anyone who goes to see Dr K quickly becomes one of his disciples lol

Dr K gave me some literature on the differential diagnosis of chronic lyme he wrote personally when I first saw him. He describes the symptomology from "chronic lyme" as being multi-faceted. Here's a copy of the first page:

https://ibb.co/prsly93

You'll see he believes you can have an active infection that lasts years.

But he also describes a "persistent presence of non-infective lyme". From speaking with him he believes these are "residual" spirochetes that arent in an infective (growing) phase. They sit there in low levels and trigger the immune system. These lead to chronic inflammation of an autoimmune nature, even though its the spirochetes triggering it. It's these cases that he uses bicillin for.

Then he describes cases where there's a co-infection. Nothing new there.

But you'll notice, he also mentions that even if you've cleared the infection, you can still be left with an autoimmune condition. He's very sharp, that Dr K, and he points to the fact that people given the Lyme vaccine went on to develop autoimmune conditions, likely via molecular mimicy of the OspA protein (which is present in both a live spirochete or the vaccine). And since you cant blame that on an infection in that instance, this is clearly a possible outcome, of the vaccine, or an infection.

It's been demonstrated that lyme patients can develop a whole host of anti-neuronal antibodies via this mechanism. I fear that's how i developed small fiber neuropathy.

Post Edited (dcd2103) : 1/24/2022 7:50:32 PM (GMT-7)

Posted 1/25/2022 2:55 AM (GMT 0)
DCD,

I am calm thanks.

Glad he sees it as a multifacted illness. I know that I have developed brain autoimmunity, more likely from bartonella.

Interesting there are different theories about the vaccine injuries from the lyme vaccine.

Some actually do point to active infection, as so much of the population may be infected by these organisms, the vaccine could be stimulating the immune system to attack lyme in that percentage. This is not my theory.

Here is a video on it by Dr SP:

https://www.youtube.com/watch?v=7qQeZ52kOUQ&ab_channel=Dr.StevenPhillips%26DanaParish
Posted 1/25/2022 3:15 AM (GMT 0)
Do you know if Dr K has a protocol for Bartonella patients with autoimmunity? I am not sure if the bicillin is the best drug for this infection.
Posted 1/25/2022 3:23 AM (GMT 0)

JaSon2233 said...
DCD,

Glad he sees it as a multifacted illness. I know that I have developed brain autoimmunity, more likely from bartonella.

This is exactly my theory on my current state as well.

Dr. SP is only a few towns away from Dr K and I know they’ve communicated. Dr K will sometimes use the what they call the Dr SP protocol for Bartonella (tetracycline and Diflucan 2 weeks on 2 weeks off) if Rifampin isn’t tolerated, etc.
Posted 1/25/2022 3:25 AM (GMT 0)

JaSon2233 said...
DCD,

I am calm thanks.

Glad he sees it as a multifacted illness. I know that I have developed brain autoimmunity, more likely from bartonella.

Interesting there are different theories about the vaccine injuries from the lyme vaccine.

Some actually do point to active infection, as so much of the population may be infected by these organisms, the vaccine could be stimulating the immune system to attack lyme in that percentage. This is not my theory.

Here is a video on it by Dr SP:

https://www.youtube.com/watch?v=7qQeZ52kOUQ&ab_channel=Dr.StevenPhillips%26DanaParish

Yea I'm not sure I buy that. Sounds like he's just guessing. I read his book, he thinks every ailment known to mankind is caused by lyme. When you claim everything is lyme you lose a little bit of credibility.

Dr K uses a little more science backing his theory here:

" The outer surface of protein A of borrelia burgdorferi (Osp A) is a lipoprotein with a molecular weight of 31kd that possesses immuno stimulatory properties, that can activate inflammatory toll like receptors of the immune system. Receptors of this kind are also expressed in a variety of neuronal elements including Schwann cells, microglia, astrocytes and oligodendroglia, which contribute to the development of autoimmune responses affecting the whole nervous system. The Osp A has a partial amino acid sequence (165-173) homologous to that of hLFA-1 (human lymphocytic associated antigen-1) that results in activation of T-cells to this autoantigen, ending in autoimmune disease via molecular mimicry"

I dont know if he has a bartonella protocol, I will ask him when I speak with him next week. Pretty sure he'd say IVIG best way to calm that encephalitis down
Posted 1/25/2022 3:27 AM (GMT 0)

JaSon2233 said...
Do you know if Dr K has a protocol for Bartonella patients with autoimmunity? I am not sure if the bicillin is the best drug for this infection.

Bicillin is what he uses for suspected autoimmunity, along with IVIG if Bicillin isn’t effective. He will use the Rifampin/Mino or the SP protocol for suspected active Bart infection. Even though Bicillin isn’t indicated for Bart, it seems to have some immune modulating properties that aren’t fully understood.
Posted 1/25/2022 3:37 AM (GMT 0)
Interesting about the bicillin, i have never tried it.

Mino + rifampin is def strong for neuro bart. I was like 1 thread away from checking into a psyche hospital after that combo at the 3 week mark. That was early on when I thought herxing hard as hell was the key to getting better lol.

I just got the AE diagnosis a couple months ago via Cunningham Panel. And did a big 4 day IVIG load last week and will do it once a month from now going forward.
Posted 1/25/2022 3:55 AM (GMT 0)

JaSon2233 said...
Interesting about the bicillin, i have never tried it.

Mino + rifampin is def strong for neuro bart. I was like 1 thread away from checking into a psyche hospital after that combo at the 3 week mark. That was early on when I thought herxing hard as hell was the key to getting better lol.

I just got the AE diagnosis a couple months ago via Cunningham Panel. And did a big 4 day IVIG load last week and will do it once a month from now going forward.

IVIG will 99% fix you for sure, just have to give it time And the proper dosage per month.
Posted 1/25/2022 4:30 AM (GMT 0)
Thanks I am very hopeful for IVIG.

DCD, I agree the SP is limited in his thinking regarding treating. I do think that chronic infection is massively overlooked by mainstream medicine and a thinker like him putting a book out is good for the world.

The chronic infection vs autoimmunity debate is a fascinating one.

It is interesting, Dr M did a lecture at the Norvect conference where he describes a cohort of his 25 RA patients who had bartonella - 95% had complete remission with antibiotics alone - no disease - auto-antibodies remained however.

Its clear that many of us need immunmodulation, but it does seem that tons of people will have positive ANA's with lyme or bart disappear with therapy, also talked to people with autoimmune connective tissue diseases completely remit (including autoantibodies) from abx therapies.

There is that whole road-back website of people chronicling recoveries using minocycline for autoimmune illnesses.

Others, me included have been made significantly worse by trying to kill these organisms with abx even when they are clearly still there (bart repeatedly has shown up in my blood and skin biopsy).

The vaccine piece is also interesting. I have talked to two Bart/PANS fathers who's kids illness was vaccine triggered (not lyme vax), who benefited some from IVIG or Rituximab, but only completely recovered after Dr M protocol.

I know these are all anecdotes, but food for thought perhaps. I tend to believe it may be hard for these most cases of chronic lyme to resolve withoug massively lower the load of these organisms. Unfortunately, many of us suffer from the conumdrum of causing massive prolonged increases inflammation by trying to kill these microbes (be it exacerbating autoimmunity or just cytokine/herx stuff) that end up damaging the body and causing much more severe symptoms.

Post Edited (JaSon2233) : 1/24/2022 9:38:24 PM (GMT-7)

Posted 1/25/2022 9:47 AM (GMT 0)
Can you tell me what state Dr K is in?
Posted 1/25/2022 10:45 AM (GMT 0)

sdarrah said...
Can you tell me what state Dr K is in?


Connecticut
Posted 1/25/2022 11:17 AM (GMT 0)

JaSon2233 said...
Thanks I am very hopeful for IVIG.

DCD, I agree the SP is limited in his thinking regarding treating. I do think that chronic infection is massively overlooked by mainstream medicine and a thinker like him putting a book out is good for the world.

The chronic infection vs autoimmunity debate is a fascinating one.

It is interesting, Dr M did a lecture at the Norvect conference where he describes a cohort of his 25 RA patients who had bartonella - 95% had complete remission with antibiotics alone - no disease - auto-antibodies remained however.

Its clear that many of us need immunmodulation, but it does seem that tons of people will have positive ANA's with lyme or bart disappear with therapy, also talked to people with autoimmune connective tissue diseases completely remit (including autoantibodies) from abx therapies.

There is that whole road-back website of people chronicling recoveries using minocycline for autoimmune illnesses.

Others, me included have been made significantly worse by trying to kill these organisms with abx even when they are clearly still there (bart repeatedly has shown up in my blood and skin biopsy).

The vaccine piece is also interesting. I have talked to two Bart/PANS fathers who's kids illness was vaccine triggered (not lyme vax), who benefited some from IVIG or Rituximab, but only completely recovered after Dr M protocol.

I know these are all anecdotes, but food for thought perhaps. I tend to believe it may be hard for these most cases of chronic lyme to resolve withoug massively lower the load of these organisms. Unfortunately, many of us suffer from the conumdrum of causing massive prolonged increases inflammation by trying to kill these microbes (be it exacerbating autoimmunity or just cytokine/herx stuff) that end up damaging the body and causing much more severe symptoms.

That's a good point. I do appreciate the attention he brings to the cause.

I've spent a lot of time on theroadback.org website. Read the book too, which I found fascinating. There's an infectious cause for a lot of autoimmune issues. I'm no doubt one of those, I'm sure that's how it started. I also dont know if I have one of these inflammatory cases where the persistent infection drives the inflammation, or if I've just got one of these anti-neuronal antibodies. Would the antibody go away if I completley cleared the infection? I dunno. Is it even possible for me to clear it? I dunno. For me it's too hard to treat. One pill of an abx or herb and I burn and vibrate like crazy.

I just started SCIG back up 2m ago, so hoping after a year of this the neuropathy will be better and I can handle abx.
Posted 1/25/2022 11:25 AM (GMT 0)

lyme guy16 said...
Is there a hint as to who dr K is? Kind...rer?

By Googling the description, it seems the doctor is Amiram Katz, MD in Orange, CT.
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