Archive for the ‘Activism’ Category

Lyme Advocates Rally in DC Over Government Mishandling of Lyme Disease – May 17, 2019

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24550940?

Lyme Advocates Rally in DC Over Government Mishandling of Lyme Disease

MAY 14, 2019 — 

FOR IMMEDIATE RELEASE

Contact: Mirenda Campirano
Phone: 956-778-1130
Email: thelymearmy@gmail.com

WASHINGTON, D.C. (May 13, 2019) — Lyme Disease patients with their families and friends from across the United States and Canada are converging on Capitol Hill in to convince elected officials to hold a formal investigation into the government’s mishandling of tick-borne diseases.

The group is gathering outside the Hart Senate Office Building on Friday, May 17, 2019. Three independent Lyme disease groups are banding together to lead the call.

Representatives of The Lyme Army centered in Texas, The Lyme Center of Martha’s Vineyard in Massachusetts and The Lyme Disease Foundation from Connecticut have scheduled appointments with elected officials to demand a comprehensive congressional investigation into the mishandling of this insidious disease by Health and Human Services and their divisions of the Centers for Disease Control (CDC), as well as the National Institutes of Health.

​The day will culminate at Union Square with a candlelight vigil at 6 p.m. to commemorate those who have lost their lives to this horrific disease. A list of names of those who have died of and with tick-borne diseases will be read. A march to Health and Human Services (HHS) will follow.

​Award-winning film producer, director, and cinematographer Andy Abrahams Wilson and another documentary crew will be there to film the day’s events.

Lyme and tick-borne diseases are not recognized by the CDC or the mainstream medical community because most Lyme patients do not meet the CDC’s current case definition, despite clinical symptoms and serologic evidence.

“Fraudulent testing criteria and an inordinately narrow case definition both promulgated by the CDC and Infectious Disease Society of America (IDSA), have led to the denial of this debilitating, incurable disease; thus, patients are left with little to no access to health care, inaccurate test results, no valid treatments, no insurance coverage, no disability insurance, and little funding for proper research,” said Mirenda Campirano, a registered nurse and advocate for those who suffer from Lyme. “We are passing these infectious diseases to our children. I know, because I gave it, along with several other tick-borne infections, to my son in utero.”

With the CDC now reporting 390,000 cases of Lyme annually, the implications of this statistic are devastating.  In addition to the revised testing standards that are too narrowly defined, many Lyme strains do not test positive on the traditional ELISA or Western blot tests. This leaves millions of people infected with Lyme disease excluded.

Lyme and tick-borne diseases are not recognized as a legitimate disease and there is insufficient funding for proper research – research to elaborate more accurate criteria for laboratory testing as well as research to determine how best to treat this devastating illness.

The decision to delegitimize Lyme and tick-borne diseases have left patients’ lives in ruins as they lose their ability to work, their homes and their savings, become isolated from their family and friends, and ignored or by the mainstream medical community. Moreover, although the CDC is a United States based organization, its reach is global. Many countries that lack the resources the United States enjoys in the field of disease control look to the US for guidance. The CDC, HHS and IDSA are supposed to be the United States’ health protection agencies. They are supposed to save lives and protect people from health threats. Part of the CDC’s mission is to provide consultation and assistance to other nations to help assist in approving their disease prevention and control. Sadly, in the case of Lyme and tick-borne diseases, these agencies are withholding the truth of Lyme disease and failing citizens of the United States as well as the world at large.

ABOUT THE GROUPS:

The Lyme Army, led by Mirenda Campirano, RN BSN, is a grass roots activist group made up of individuals from across the globe fighting for truth and justice so that Lyme Disease patients can get the help they rightfully deserve. Her son contracted Lyme in utero, while she was infected. Campirano is actively working with Texas legislators to help provide pass legislation that will provide patients and doctors with more accurate Lyme testing and insurance coverage. She is also the founder of the Lyme Disease/Tick Borne Illness Group of the Rio Grande Valley, TX.

The Lyme Disease Foundation, Inc. is the first Lyme disease nonprofit in the world. It was co-founded in 1988, by a healthcare lawyer Karen Vanderhoof-Forschner, JD, LLM, BS, MBA, CPCU, CLU and a team of Lyme researchers and business people, to find the scientific truth about Lyme disease, in the hopes of saving her dying son’s life. Her son Jamie was born in 1985 and at birth had contracted Lyme in utero. He was multihandicapped from the disease. He died in 1991 during a relapse when his brain crushed itself. On autopsy the doctors found the Lyme bacterium in his optic nerve. More IV therapy was not better treatment because he died while infected. Jamie was unique because he had damage to the back of his eyes that proved he had damage from a congenital spirochetal infection.

Dr. Enid Haller is the Executive Director of The Lyme Center of Martha’s Vineyard, a free walk-in information service for Lyme and tick-borne diseases. Both Vanderhoof-Forschner and Haller are former member of the Tick-Borne Disease Working Group Subcommittee for Access to Care Services and Support to Patients. These three organizations called on their members and supporters to be present in the nation’s capital on May 17, 2019 to their members and supporters to be present in the nation’s capital on May 17, 2019 to walk the halls of Congress to demand a congressional investigation of the mishandling of Lyme and tick-borne diseases.

Visit The Lyme Army Facebook page, the Lyme Disease Foundation Facebook page, or The Lyme Center at Martha’s Vineyard.

______________________

**Comment**

While I won’t be there, I’m with you in Spirit!

Category:

Activism, Lyme, Uncategorized

How My Daughters Taught Me To Open Up About My Mental Health

https://folks.pillpack.com/how-my-daughters-taught-me-to-open-up-about-my-mental-health/

How My Daughters Taught Me To Open Up About My Mental Health

It took my daughter’s own battle with depression to recognize that for years, I’d been ashamed of my own mental health.
 — April 26

This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.

While walking out from a recent screening of a documentary about teenagers living with anxiety, I realized something.

I turned to my youngest daughter.

“I have lived with anxiety as long as I can remember,” I told her.

“I know,” she replied, and smiled kindly at me.

I never told anyone before about the paralyzing anxiety I experienced starting in 7th grade. I would blush till I felt my head would explode my pulse would pump in my throat like a hammer. I feared to be called on. One bully would taunt me, “Why does this happen to you?” My only exit then was going to the bathroom and hide.

“I have lived with anxiety as long as I can remember,” I told her.

Despite my intermittent anxiety, though, I built a great life. I married an amazing man, and together, we had two of the most caring, wonderful girls I’ve ever known.

But then seven years ago, when she was nine, my oldest was admitted to an inpatient psychiatric hospital and diagnosed with severe depression. My world stopped. Standing in an elevator with other parents leaving that hospital unit, I realized I was just inducted into the club of parents with children who live with a mental illness.

Yet even as we helped our oldest through her own treatment journey, it wasn’t until I had that post-movie exchange about anxiety that I realized that my daughter’s mental health issues were closely linked to my own.

I realized then that the stigma I felt about my own anxiety issues had prevented me from talking to my own children about them. I was a nurse, a mother, and a person living with anxiety, but I had never told them that mental health issues were was normal to struggle with. In fact, my husband and I both come from families with long lineages of mental illness, but it was never discussed… and so, in turn, we had not talked about it with our daughters.

I was a nurse, a mother, and a person living with anxiety, but I had never told them that mental health issues were was normal to struggle with.

When my daughter was diagnosed with depression seven years ago, my instinct when family members had told me to hide the truth was to fight as a family in the open. I wasn’t going to make my daughter think I was ashamed of her.

But now, as I considered the rhetorical mirror my youngest daughter had had held up to me, I realized I needed to do more than just advocate for their mental health. I needed to live openly with my own anxiety issues as well. We pass so many things on in our genes to our children. I did not want to pass shame on to them by example.

So now, I’m trying to live life the way I want my daughters to live it: by accepting my own mental health challenges, and listening to them when they arise. So I try to sleep more, eat healthier, and unplug when I feel overwhelmed. And when I feel the old me, the anxious me, rising up? I take her to the yoga room at my gym, and give her a hug. Because she is me, and I need to accept and love myself if my daughters are going to do so as well.

We pass so many things on in our genes to our children. I did not want to pass shame on to them by example.

Anxiety is part of who I am: not knowing and not understanding what was happening to me was like walking with a small rock in my shoe and not able to take it out .Its extremely uncomfortable but you keep walking.

My daughters are now thriving teenagers. Both have mental health issues, but they are under control, because we helped them find the right tools early on. If only I had done the same for myself, but it’s never too late to stop ignoring your issues and practice some self-compassion.

It’s easy to say, “Remember to do some self-care.” It’s harder to implement. The notion to always care for your children before yourself is something that I have always done. It’s hard to reprioritize, but by relearning to care for my own mental health, I now think I’m in a better place to be the mother my two strong, brave daughters truly deserve. A mother who embraces not just their mental health, but her own.

_____________________

**Comment**

Lyme/MSIDS can cause all manner of mental issues.  Please share this information with others because you can feel so completely isolated.  There were many, many days throughout treatment where I seriously wondered if I was losing my mind.  Normal.  Very normal when treating this beast.  Forgive yourself and treat the sickie kindly.

I highly recommend becoming a part of a support group so you can quickly learn you aren’t alone.  There are many out here in Lyme-land who also feel isolated and question their sanity.  When you have doctor after doctor telling you that “it’s all in your head,” you begin to believe them.  They are, after all, “experts,” right?

Wrong.
They are human beings afraid of losing their livelihoods, who are often uneducated about this beast.

At this point, my best advice is skip mainstream medicine.  It WILL NOT help you.  It will only take your money, abuse you, and cause you infinite grief.

Get to a trained ILADS doctor.  If you don’t know where to find these folks, contact your local Lyme support group.  They are boots on the ground folks who are up on this information.

For more:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2019/03/24/cat-scratch-disease-caused-teens-schizophrenia-like-symptoms-report-says/

https://madisonarealymesupportgroup.com/2019/04/07/missing-links-connect-the-dots-between-lyme-mental-health/

https://madisonarealymesupportgroup.com/2019/04/11/lyme-disease-neurological-changes-in-children/

https://madisonarealymesupportgroup.com/2019/03/26/lyme-its-known-involvement-in-mental-health/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/

 

 

 

Category:

Activism, Psychological Aspects

One Family’s Story of Strep, Lyme Disease, and PANS/PANDAS

https://www.lymedisease.org/kravitz-pandas-lyme/

One family’s story of strep, Lyme disease, and PANS/PANDAS

PANDAS Lyme disease

By Jenny Kravitz

On January 3, 2019, my family’s whole world changed LITERALLY OVER NIGHT.

Our once loving little man (now age 6) was filled with rage, aggression and hatred. He went from snuggling with me and loving me, to lashing out at me, telling me he hated me, wanted to kill me and physically coming after me.

Let’s back track. As a baby and toddler, Nathan got strep throat constantly over and over again. He had his first positive strep test at six months old. From then on, it felt like a battle with strep every month.

At 3, Nathan got his tonsils and adenoids removed, in hopes this would cure his recurring strep infections. He had to go back under the knife two days after surgery for hemorrhaging.

Nathan made a full recovery after spending a few days in the PICU and he returned home. Little did we know that strep would come back with a vengeance!

I personally never knew until now that strep could come back with no tonsils and even hide in other places. It was living in his GI system and causing severe inflammation in his brain, liver and spleen, causing Nathan now to be critically anemic.

The “flu”?

Fast forward to January of 2019. Nathan came down with the “flu.” He was lethargic, sleeping 24/7. No matter what we did, he persistently had high fevers of 103-104 for days on end.

Finally after two weeks, the fever broke and slowly started coming around. He was still quiet, still tired but happy to be around friends.

Then, came rage and saying awful things. Then he became sad, overly sensitive, and would cry for hours. Then came the bowel regression. I’m not telling this for pity or embarrassment, but to make others aware, because this is what this nasty illness does. This is OUR REALITY. Nathan was fully potty trained at the age of 3. He has now regressed and is most of the time in pull ups, having three or four accidents a day.

He has “flares” that can be caused by just about anything. I’ve seen it happen when he’s overtired, has a loose tooth (open wounds allow bacteria to move freely), and when he comes into contact with illness. Nathan doesn’t have to have a current strep infection to cause a flare up. If he simply is around someone who has strep, this can cause a huge reaction.

I called an emergency IEP meeting with Nathan’s teachers, to figure out what the hell was going on! THIS WAS NO WAY ADHD OR PEDIATRIC BIPOLAR like the neurologist wanted to label my child. We put a good plan in place and I mentioned my concerns and thoughts.

Finally, some answers

Late January, I called a naturopathic doctor in New Hampshire who is highly knowledgeable and came recommended by many. This was after a friend reached out to me and told me Lyme disease could cause this behavior and then told me about a illness called PANDAS (pediatric autoimmune neurological disorder associated with streptococcus).

My head went spinning, I researched and researched, stayed up late researching, googling, joining support groups. OH MY HEAVENS. This is it! This was my son. I only remember ever seeing two ticks on Nathan. But honestly, I didn’t know much about tick-borne illness, so I removed the ticks and shrugged it off.

We went to see this naturopathic doctor. Fast forward again, to when his lab work came back. Nathan’s strep antibodies were four times what they should be! His CRP (which measures inflammation in the body) was also four times what it should be. BAM 💥PANDAS! This mama knew it!

Then we got the Lyme lab work. He tested positive for Lyme AND mycoplasma AND Bartonella. BAM AGAIN! WE FINALLY HAD A DIAGNOSIS! We also found out he has celiac, so we are now a gluten-free family.

A face to the nastiness

Don’t get me wrong. I was sad, I cried. But this mama was and still am so relieved to put a face to this nastiness that was causing Nathan to act so out of character.

He now is in treatment. On two antibiotics and natural tinctures to support his immune system (which by the way is literally nothing) and to help with the inflammation that’s going on in his body/brain.

Nathan still struggles with facial and vocal tics, potty regression, slurred slow speech, mood swings and major GI issues. But slow and steady and ONE DAY AT A TIME!

Love you my sweet, brave boy. Mama always has your back!

Jenny Kravitz lives in New Hampshire. She shared this on her Facebook page and gave us permission to republish it.

___________________

**Comment**

Children with PANS/PANDAS often have an infection(s) triggering their illness.  Treating this infection(s) is imperative. According to a Wisconsin specialist, 80% of his PANS/PANDAS patients have Lyme and other coinfections. This is important to know and tell others about, remembering that tick borne illness testing is abysmal.

Getting to a specialist who understands this complexity is paramount.

For more:  https://madisonarealymesupportgroup.com/2019/04/09/abstract-bartonella-in-boy-with-pans/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/04/11/hidden-invaders-infections-can-trigger-immune-attacks-on-kids-brains-provoking-devastating-psychiatric-disorders/

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2019/01/02/pans-pandas-a-survivors-story/

Please spread the word and educate others. Children are losing their childhoods to this.

 

Category:

Activism, Bartonella, Inflammation, Lyme, PANS, Psychological Aspects, Uncategorized

FREE Showing of ‘Secret Ingredients’ May 15-22

https://freeshowing.secretingredientsmovie.com/?  Go here to see Trailer and sign up

secret_ingredients_logo_straight_500

The extraordinary FREE worldwide showing of Secret Ingredients — a powerful film by Jeffrey Smith and Amy Hart — shares remarkable stories of people who regain their health after discovering the “secret ingredients” in their food and making a bold commitment to avoid them.

Join Us!

MAY 15TH-22ND

 

Category:

Activism, diet and nutrition, Gut Health, Inflammation, Psychological Aspects

Irish Student Admitted to Hospital For Depression Actually Had a Deadly Brain Infection

https://www.independent.ie/life/health-wellbeing/doctors-discover-irish-student-who-was-admitted-to-hospital-for-depression-actually-had-a-deadly-brain-infection-38075556.html

Doctors discover Irish student who was admitted to hospital for depression actually had a deadly brain infection

Hannah Farrell
Hannah Farrell

Erin Cardiff

A Dublin student who was admitted to a psychiatric hospital after doctors thought she was having a mental breakdown has told how tests revealed she actually had a deadly brain infection.

When 22-year-old Hannah Farrell’s behaviour changed dramatically – making her forgetful and causing her to sleep more often – she thought she was burnt out after sitting stressful exams, then working around the clock in a deli.

But in time, the Dublin woman’s behaviour grew more and more strange, prompting a diagnosis of depression, which led to her being admitted to a psychiatric hospital in August 2017, following a rapid decline.

She said:

“I didn’t feel depressed. Deep down, I knew something more sinister was going on, but I felt as if doctors were assuming I just didn’t want to accept help for a mental health condition.

“To this day, I have nightmares about being in a psychiatric hospital. My memories are very hazy, almost like it was a dream.

I can remember odd details, like all the couches being green, and falling asleep there on the first night – and then, nothing. For three months after that, it’s just blank.”

Hannah Farrell was hospitalised in 2017
Hannah Farrell was hospitalised in 2017

Piecing together what happened next by speaking to doctors and relatives, Hannah, who has now recovered and is completing a psychology degree at Dublin’s National College of Ireland, has been told that, two days after arriving at the psychiatric hospital, a medic became concerned that her problem was neurological, not psychological.

An MRI scan then revealed that she was suffering from encephalitis – a rare but serious inflammation of the brain.

Referred to Dublin’s St Vincent’s Hospital, her life hung in the balance as she was pumped full of antibiotics and given 13 different plasma transfusions.

Then, on 12 November 2017, she suddenly “woke up” and began responding to her family – a poignant moment which they caught on camera – after months of being unable to walk or talk.

“I had been almost catatonic,” she explained. “I couldn’t speak and had lost so much weight.”

“I was on a feeding tube and had to have my saliva sucked away every few minutes to stop me choking. My family had been by my bedside, talking to me throughout, even though I couldn’t respond.”

“Then, that November day, my mum said, ‘I’m so tired, are you?’ and I just replied ‘Yes.’  It was like I’d suddenly woken up.”

Hannah told how her nightmare began back in the summer of 2017 when, having just finished her second-year exams, she started working long hours in a deli and was under a lot of stress.

An MRI of Hannah's brain, which shows a pineal brain cyst
An MRI of Hannah’s brain, which shows a pineal brain cyst

So, when she initially developed flu-like symptoms, both she and her GP thought she was simply run down.

Then, three weeks later, she woke with her glands so swollen that she was in agony, prompting medics to prescribe her a course of antibiotics.

“I was supposed to be visiting my brother in London two weeks later, so I took the antibiotics and hoped for the best,” she said. “Looking back, it wasn’t the wisest decision to go, but I really didn’t want to miss out on seeing him.

“The first warning sign came when I was packing and couldn’t find the €200 I had changed up into pounds. Ordinarily, I’d be really stressed, but I just didn’t care and didn’t see it as a big deal.

“Then, when I got to London, my brother took one look at me and said I seemed really out of sorts. The whole trip, I basically stayed in his apartment sleeping. We never went sightseeing or did any of the other things we had planned.”

Back home, Hannah’s behaviour grew more and more chaotic. She recalls not looking after herself and struggling to perform everyday tasks like showering and tidying up.

Increasingly forgetful, she would often lose things and, to this day, has no memory of her grandmother passing away on 17 July.

She added: “I don’t remember the funeral, but apparently I was acting really strangely and couldn’t comprehend what had happened.

“My speech also began to be affected, and would be very slurred and slow. I have no idea how, but I kept working right up until I was admitted to hospital.

“I have vague memories of customers getting angry with me when I couldn’t answer them, or gave them the wrong change as I got confused.”

Eventually, she was diagnosed with depression and referred to a therapist – but during the session, her speech became so slurred she could barely be understood, prompting her to return to the doctor.

She continued: “I took my mum into the room with me, as I could barely speak. Whenever I tried to, the words just wouldn’t come out.

“I think the doctors thought I just wasn’t accepting help, and so I was referred to a psychiatric hospital.”

There, medics became concerned Hannah’s problem was neurological and, two days after she arrived, she was booked in for an MRI scan.

While waiting for the MRI, her condition deteriorated to the point where she could hardly move and her eyes became extremely sensitive to light.

And, when the scan revealed a cyst measuring around 1.5cm in the centre of her brain, she was whisked to St Vincent’s Hospital.

“That actually turned out to be unconnected to the encephalitis, but in a way, it was almost lucky as it flagged me up to neurologists and meant they leapt into action,” she said.

Following blood tests and another MRI scan, Hannah had a lumbar puncture to test the fluid around her brain and spinal cord – the results of which revealed she had anti-nmda receptor encephalitis, an autoimmune version of the condition.

According to the charity The Encephalitis Society, who have been of invaluable support to Hannah, this is caused by the immune system attacking the brain in error, resulting in symptoms including confusion, altered personality or behaviour, psychosis, hallucinations and memory loss.

Following her official diagnosis, which came in September 2017, Hannah was on the brink of death, as medics tried everything to save her.

When 13 different plasma exchanges – a procedure that removes plasma from the blood and replaces it with new plasma fluid – failed to make any difference, things looked grave.

But then, on 12 November, she suddenly roused and began to respond to her parents.

From there, she went from strength to strength and was walking again in just two weeks, although her memory was greatly affected.

“My mind was stuck back in the summer, months earlier,” she said, adding that her speech was also very slurred at first. “I would get very confused, and have a 10-15 minute memory before it would be wiped, then I’d ask again why I was in hospital, with no clue of what had happened.

“I missed out on a lot, like my nephew saying his first word and taking his first steps. When I saw photos of him, he was suddenly older.

“People I’ve known for years would come and visit me, and I wouldn’t recognise them.”

Finally, in December 2017, after 105 days, Hannah was discharged from hospital.

In February 2018 she started speech therapy, occupational therapy and physiotherapy at the National Rehabilitation Hospital, Dublin.

Slowly, her speech returned to normal, her memory began to improve and she even returned to her studies, which she had put on hold.

“Now, I am more forgetful than I was before, but my memory has improved a lot from when I first came round in November 2017,” she said. “I’ve learnt to cope by being organised. I set loads of alarms and reminders, and have sticky notes all over my room.”

After returning to university, Hannah submitted her final thesis – poignantly written on brain injuries – in April this year, and is now gearing up to take her third year exams.

By speaking out, she hopes to both thank The Encephalitis Society, who have helped her feel less alone, as well as the medical staff in St Vincent’s and the National Rehabilitation Hospital, and to raise awareness of the condition that has claimed months of her memories.

Adding that she also wants to praise her boyfriend Ross, 22, for his unwavering support, she said:

“Encephalitis is often misdiagnosed, and it’s scary how many people haven’t heard of it. Even doctors need to be better informed, as reading about something in a medical book is very different to coming up against it in real life.

“If people are more aware of the symptoms, they can look out for those changes in behaviour like I had.

“Mentally, this has been very overwhelming. At first, I cried every day, but then survival mode kicked in and I realised it won’t help me to dwell – I have to keep going.

“I do worry about relapsing and getting sick again, but I don’t want to become my illness. This isn’t me – it’s something that happened to me, and I am so lucky to have survived.”

For information, visit www.encephalitis.info

Press Association

____________________

**Comment*

Where to even start…..

Thank God for the medics who spoke up for this poor girl!

Notice the patient was quite aware she didn’t feel depressed, yet the doctors assumed.  (Assuming makes an ass out of u and me & doctors).

Sudden change in behavior should be a red-flag to everyone – especially trained doctors!

This is happening more and more, yet is considered to be rare:  https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/  Two stories are presented in this link – Susannah Cahalan’s story from the book, “Brain on Fire,” who had a similar auto-immune brain issue, and then the story of Patrik who had Lyme disease which morphed into Autoimmune encephalopathy.

Lyme/MSIDS, PANS, PANDAS, & autoimmune encephalopathy can all be interconnected and we need knowledgable practitioners who can recognize this as it’s not going away anytime soon.

https://madisonarealymesupportgroup.com/2019/01/27/pans-pandas-autoimmune-encephalitis-rickert-hong/

https://madisonarealymesupportgroup.com/2019/01/24/toddler-suffering-from-hallucinations-seizures-diagnosed-with-rare-brain-disease/

How many people have to get this before they quit saying it’s rare?  https://www.reliasmedia.com/articles/142440-autoimmune-encephalitis-not-rare-and-increasing  Many clinicians still consider autoimmune encephalitis to be a “diagnosis of exclusion” or “rare” when compared to infectious encephalitis. Results of this study contradict that presumption and serve as an eye-opener.  Detection of autoimmune encephalitis is increasing over time. According to the results from this population-based study, its prevalence and incidence are comparable to infectious encephalitis.

Also, Lyme/MSIDS can clearly be a part of this picture:   https://madisonarealymesupportgroup.com/2018/11/06/diagnosing-treating-autoimmune-encephalitis-in-patients-with-persistent-lyme-symptoms/

https://madisonarealymesupportgroup.com/2018/12/05/brain-on-fire-cases-epitomize-benefits-of-dual-trained-doctors/

https://madisonarealymesupportgroup.com/2019/03/16/brain-under-attack-pans-pandas-related-developmental-disorders/

Here, LLMD Dr. Cameron gives a rebuttal to Wormer’s statement that no such thing as Lyme encephalitis exists:  http://danielcameronmd.com/patients-should-be-warned-of-lyme-disease-complications-including-lyme-encephalopathy/

Key quote:  Lyme encephalopathy has repeatedly been described in the literature.

Then he goes on to list many cases.  Wormser lives in a different reality.

More on Anti-nmda receptor encephalitis:  https://www.antinmdafoundation.org/the-illness/what-is-anti-nmda-receptor-encephalitis/

To read one doctor’s advice concerning patients with Lyme/MSIDS & autoimmune encephalitis:  https://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html

Key information from link:

The dogma that Lyme patients should never receive steroids or immunosuppressive agents is not always true…With antibiotic therapy there may be a dramatic response: they get much worse.  This is even more the case with therapy directed at Babesia and Bartonella….This is not a Herxheimer reaction.  This is the most crucial point of this post.  Continued therapy will not lead to improvement.  A Herxheimer reaction is caused by a mini-cytokine-storm.  It is normal, although exaggerated response to killing germs. This other reaction is caused by exacerbation of an autoimmune response: the production of self-directed antibodies. This is very troublesome and difficult to manage….The disease is very complex and multifaceted. Something to keep in mind when patients do not respond to standard therapy as expected.

 

Category:

Activism, Psychological Aspects