Archive for the ‘Psychological Aspects’ Category

What Role Do Co-infections Play in Lyme Disease Diagnosis?

https://www.bca-clinic.de/en/what-role-do-co-infections-play-in-lyme-disease-diagnosis/

What Role Do Co-infections Play In Lyme Disease Diagnosis?

10. May 2019in BCA-clinic

Chronic Lyme disease is an intimidating enough prospect by itself. Unfortunately, a large number of cases are compounded by Lyme co-infections – additional diseases that are transferred simultaneously with the Lyme-causative Borrelia burgdorferi bacteria. Ticks are responsible for all these transmitted infections; they carry the strains that are passed on to their human hosts. Unfortunately, many patients don’t realise that co-infections even exist, and more crucially, many doctors don’t either. It’s extremely important to test for co-infections at the same time as Lyme disease diagnosis, as they can compound or revitalise the primary debilitating symptoms of the umbrella infection. This makes simultaneous diagnosis an important area of study for Lyme-literate doctors.

The majority of co-infections will exacerbate the symptoms of chronic Lyme itself. They modulate and stymy the immune system, as well as providing resistance to therapy. Chronic Lyme disease diagnosis in itself is a controversial topic, whose waters do not need muddying further. Acute Lyme is relatively straightforward to diagnose, if the distinctive bullseye rash is present. This rash – a red circle surrounded by a larger red circle, forming the shape of a bullseye – will be noticeable in the majority of cases, although it can be easily missed. Once the infection develops to chronic Lyme, however, the process of diagnosis becomes much more difficult, as Lyme is not usually considered among potential diseases.

Lyme is sometimes nicknamed ‘the Great Imitator’, due to its symptoms mimicking the symptoms of other significant diseases. The symptoms themselves bear very little resemblance to the initial ones presented by acute Lyme, instead differing in severity from patient to patient. Broadly, they encompass everything from fatigue, joint pain and muscle pain to depression, neurological issues, headaches and sleep disturbances. These symptoms are so broad that it’s easy to see why under-educated doctors will often reach for something more common, like multiple sclerosis or fibromyalgia. When it comes to Lyme, misdiagnosis rates are estimated to be extremely high, with the full extent unknown. Co-infections can cloud diagnosis by adding more symptoms, presenting new ones, or making others more pronounced. To fully benefit Lyme disease treatment, the full spectrum of issues must be investigated and laid out before the process begins.

The full range of symptoms must be examined during Lyme disease diagnosis.

BCA-lab, who are Lyme specialists based in Augsburg, Germany, understand co-infections very well. They will run a full gamut of tests early on in the treatment process in an effort to understand exactly what the patient is suffering from, and how precisely they’re suffering from it. Some of the main diseases they test for can severely change the way Lyme develops within the body, and how it should be treated. Some co-infections can even revitalise the Lyme disease symptoms after the primary Borrelia infection has been dealt with, leading patients to believe that either they are not fully cured, or that they were never suffering from Lyme in the first place.

One of the most common Lyme co-infections is Bartonellosis. If this co-infection is present in the initial tick bite, and is allowed to run amok within the system, it can be expected to have substantial significance to the overarching Lyme infection. The clinical manifestations of both diseases contain numerous overlaps, and the symptoms presented by both are undeniably broad. Bartonellosis is still not well understood by the medical community at large; it was initially thought to be relatively benign. However, the long-term effects and symptoms of the disease are intimidating, especially if paired with Lyme. They include fever, fatigue, joint pain, muscle ache and brain fog. More alarmingly, the disease can have a range of neurological effects, resulting in symptoms such as panic attacks, seizures, depression, epilepsy and psychosis. Many of these symptoms are extremely similar to the ones presented by chronic Lyme, which makes differentiating them at the diagnostic stage a critical first step.

Another common co-infection is Chlamydophila pneumoniae, the primary manifestation of which is the well-known and well-understood pneumoniae. However, left over a long period of time, Chlamydophila pneumonia can severely compromise the body’s immune system by placing it under extreme stress. Upper respiratory infections can be a huge drain on the immune response, especially if they are recurring. Given the fact that chronic Lyme already sends the immune system haywire, Chlamydophila pneumoniae is a very dangerous co-infection, if left to its own devices. To compound this, the infection is quite hard to both detect and treat, as chlamydia are much smaller than other pathogens. Mixed in with Lyme disease and possible other co-infections, it can often go undetected.

Chlamydophila pneumoniae can be one of the more dangerous Lyme co-infections.

 

Bartonellosis and Chlamydophila pneumoniae are just two examples of co-infections that can cause severe problems for Lyme patients if they are not dealt with adequately. Currently, the answer to the question posed by this article, ‘what role do co-infections play in Lyme disease diagnosis’, is simply ‘not enough’. There needs to be a combined and concerted effort on the part of medical health professionals everywhere to engage with co-infections and recognise the danger they pose to Lyme patients. Diagnosis is often the hardest part of the Lyme battle; it’s the stage where we should strive to get everything right the first time. Correct diagnosis across the Lyme disease spectrum lays a strong foundation for successful patient treatment and subsequent recovery.

___________________

**Comment**

Great article overall, just remember this is written by a lab that does testing for profit, so their first priority is selling tests.

Testing throughout the history of Lyme/MSIDS has been extremely poor.  Most testing is serological testing – utilizing blood, where frankly these pathogens do not hang out.  They are stealth pathogens and burrow deep within the body to avoid the immune system, treatment, AND testing.

LLMD’S (Lyme literate doctors) are educated in the symptomology of these diseases and can diagnose you clinically.  Treatment is often a bit of “Let’s try this and see,” approach as everyone is so different with numerous variables.  This is why mainstream medicine is woefully unprepared and uneducated for all of this.  They simply are ignorant.

To date, nobody has a true bead on what the implications of multiple pathogens fighting synergistically to the body are, but this work is screaming to be done as recent research has borne polymicrobialism out to be true:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

Mainstream medicine STILL hasn’t acknowledged or dealt with this FACT.

It makes the CDC/IDSA mono-therapy of doxycycline a true joke. As well as their FDA-approved 2-tiered testing which misses half of all cases.

Bartonella, as mentioned in this article, is a HUGE player that up until recently has been considered a benign disease with required of cat exposure, yet any Lyme literate doctor OR patient will tell you Bart is far from benign, and a plethora of case studies have proven you don’t have to be around cats to contract it.  In fact, personally, it is my Achilles heel.  It’s what I deal with – perhaps forever.

Great read on the types of chlamydia:  https://articles.mercola.com/chlamydia/types.aspx The first two are mentioned in the abstract:

  • Chlamydia trachomatis can be passed from one person to another via unprotected sexual intercourse. Pain English: this is a STD.
  • Chlamydia pneumoniae (C. pneumoniae), a nonsexually transmitted disease that infects the lungs and causes bacterial pneumonia.
  • Chlamydia psittaci is another chlamydia strain that can lead to a rare condition called psittacosis, aka “parrot fever.”

https://madisonarealymesupportgroup.com/2016/10/07/chlamydia-like-organisms-found-in-ticks/

https://madisonarealymesupportgroup.com/2019/04/19/first-study-showing-borrelia-chlamydia-mixed-biofilms-in-infected-human-skin-tissues/  Excerpt:  

IN SUMMARY, OUR STUDY IS THE FIRST TO SHOW BORRELIA–CHLAMYDIA MIXED BIOFILMS IN INFECTED HUMAN SKIN TISSUES, WHICH RAISES THE QUESTIONS OF WHETHER THESE HUMAN PATHOGENS HAVE DEVELOPED A SYMBIOTIC RELATIONSHIP FOR THEIR MUTUAL SURVIVAL.

https://madisonarealymesupportgroup.com/2019/03/09/researchers-identify-herpes-1-chlamydia-pneumoniae-several-types-of-spirochaete-as-major-causes-of-alzheimers/

https://madisonarealymesupportgroup.com/2018/04/04/correlation-of-natural-autoantibodies-heart-disease-related-antibacterial-antibodies-in-pericardial-fluid-mycoplasma-bb-chlamydia/  Excerpt:

Mycoplasma pneumoniae antibody positive patients had significantly higher anti-CS IgM levels. In CABG patients we found a correlation between anti-CS IgG levels and Mycoplasma pneumoniae, Chlamydia pneumoniae and Borrelia burgdorferi antibody titers. Our results provide the first evidence that natural autoantibodies are present in the PF and they show significant correlation with certain antibacterial antibody titers in a disease specific manner.

 

 

 

 

 

 

Category:

Activism, Bartonella, Lyme, Psychological Aspects, Testing, Ticks, Treatment

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