Archive for the ‘Psychological Aspects’ Category

Treat the Infection, Psychiatric Symptoms Get Better

It has long been a belief of mine that pathogen involvement should be considered with psychiatric issues, particularly with Lyme/MSIDS. I came to this conclusion after watching my husband battle with anxiety, depression, memory loss, rage, sudden crying spells, fear of abandonment, and other bizarre symptoms https://madisonarealymesupportgroup.com/2015/09/16/bizarre-symptoms-msids/ which were completely new and out of the blue, while we were in treatment for Lyme/MSIDS. Upon further reading and talking to other patients, I became convinced.

The following article adds further credence to this idea: http://www.ijporlonline.com/article/S0165-5876(16)30380-9/fulltext

While this study is not a randomized clinical trial, it reveals improvement of psychiatric symptoms when concurrent sinusitis was treated and resolved.

Treatment was amoxicillin & clavulanic acid. A few received clindamycin or azithromycin, all of which are common antibiotics for Lyme/MSIDS and other infections.

The conclusion of the study stated that there is mounting evidence that inflammation and/or infection can affect neuropsychiatric health.

This has been reported before by a prominent LLMD.

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

LLMD, Dr. Horowtiz, goes on record stating that antibiotics are effective in Schizophrenia. With irony he points out that the authors attribute the reason minocycline helped these patients is due to its ability to affect glutamate pathways in the CNS, blocking nitric oxide-induced neurotoxicity, and inflammation in the brain. He reminds them that minocycline is a tetracycline antibiotic that very well may be treating an infection. He also emphatically states that he has had several schizophrenic patients test positive for Bb, the agent of Lyme Disease. After taking doxycycline they improved significantly and with the help of their psychiatrist, were able to reduce and in some cases eliminate all of their antipsychotic medication. It is important to note that patients remained stable on antibiotics but their symptoms returned if they stopped treatment. He says a doctor should suspect MSIDS in psychiatric patients if they have a symptom complex that has good and bad days with associated fevers, sweats and chills, fatigue, migratory joint and muscle pain, migratory neuralgias with tingling, numbness and burning sensations, a stiff neck and headache, memory and concentration problems, sleep disorders with associated psychiatric symptoms.
Horowtiz also reports the work of psychiatrist Dr. Brian Fallon who has linked Lyme Disease to paranoia, thought disorders, delusions with psychosis, schizophrenia, with or without visual, auditory or olfactory hallucinations, depression, panic attacks and anxiety, obsessive compulsive disorder, anorexia, mood lability with violent outbursts, mania, personality changes, catatonia, dementia, atypical bipolar disorder, depersonalization/derealization, conversion disorders, somatization disorders, atypical psychoses, schizoaffective disorder and intermittent explosive disorders. In children and adolescents MSIDS can mimic Specific or Pervasive Developmental Delays, Attention-Deficit Disorder (Inattentive subtype), oppositional defiant disorder and mood disorders, obsessive compulsive disorder, anorexia, Tourette’s syndrome, and pseudo-psychotic disorders.

Minocycline has also been found to help MS: https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/

For patients with psychiatric issues, it’s important to rule out infections as players, unfortunately, that’s often nearly impossible for Lyme/MSIDS as the testing is so poor. ALL doctors need to become more educated on tick borne illness and its ability to cause and/or exacerbate psychiatric and cognitive issues. Hopefully, long gone are the days where Lyme/MSIDS is considered a mild dermatological disease with some joint involvement and fatigue.

This stuff can put you in the psych ward.

For more: https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

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

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

https://madisonarealymesupportgroup.com/2017/09/19/three-things-for-parents-to-watch-for-regarding-tbis/

Category:

Lyme, Psychological Aspects, research, Treatment

PANS/PANDAS, Steroids, Autoimmune Disease, Lyme/MSIDS, & the Need For Medical Collaboration

http://www.neurosciencechicago.com/pans-and-pandas-in-pediatric-diagnostics/ The Neuroscience Center

PANS and PANDAS in Pediatric Diagnostics

PANS is a relatively new term used to describe acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

PANS & PANDAS is used to describe the group of children and adolescents who have sudden onset of Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following conditions such as streptococcal infection (Strep throat & Scarlet Fever), influenza, chickenpox, Lyme disease, and mycoplasma (which causes so-called walking pneumonia). The illness can become a psychiatric emergency within 48 hours, and should be treated by a Pediatrician (or other primary care physician) along with a Psychiatrist.

Currently, the illness is conceptualized as an example of mis-directed immune attack, and might occur because of a kind of similarity between antigens on the viral or bacterial agent and childs own cells – so the body begins to attack itself.

Both PANS and PANDAS are clinical diagnoses. They are made by a physician after clinical evaluation. The history must reveal an abrupt onset of OCD and/or tics (or sudden, dramatic worsening if the child had pre-existing OCD or tics). Laboratory testing will not confirm or negate the diagnosis. Testing can suggest different routes of acute and/or long-term treatment – relevant tests include anti-streptococcal antibody titers, anti-nuclear antibody titers, and a test of immune reactivity, such as an erythrocyte sedimentation rate (ESR) or C-reactive protein.

The primary care physician will likely prescribe antibiotics, nutritional support, and perhaps steroids. Sometimes, IVIG (immunoglobulins administered by IV) or plasmapheresis (a way of purifying blood and then replacing it into the patient). Hyperbaric Oxygen Therapy is occasionally useful to restore physiologic resilience and aid in stabilizing immune dysfunction. Psychiatric care will likely include traditional anti-OCD interventions such as medication.

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Great, concise information. A warning; however, about steroids if pathogens are involved as certain steroids (catabolic) can suppress the immune system, allowing infection to proliferate and worsen. This has happened to many a Lyme/MSIDS patient when they were misdiagnosed initially with things like fibromyalgia, MS, and other autoimmune conditions and given catabolic steroids such as prednisone or cortisone. https://www.verywell.com/anabolic-steroids-corticosteroids-difference-190456

Not all steroids do this and it’s important not to take a broad brush stroke condemning all when some actually build the body up (anabolic) as well as the fact patients may even require small doses of catabolic steroids such as cortisol if they aren’t making enough. Blood tests are often used along with a clinical diagnosis to determine these imbalances. http://www.hormone.org/diseases-andconditions/adrenal/adrenal-insufficiency

So type of steroid is important as well as dose.

Nothing’s ever simple, is it?

And to confuse things even more

HLN, Published 2012, Approx. 8 min.

What if an apparently normal, intelligent and productive person suddenly became psychotic, violent and unstable? Susannah Cahalan, tells her frightening story in the book Brain on Fire: My Month of Madness.

In this case, Cahalan was finally diagnosed after the doctor had her draw a clock, a common test for Alzheimer’s patients. When she drew it, all the numbers were on the right side, demonstrating that the right side of her brain was not functioning as well as the fact her problem was neurological not psychiatric. She was found to have autoimmune encephalitis and the treatment is very high doses of steroids which suppress the immune system as well as IVIG, a blood product prepared from the serum of between 1,000 and 15,000 donors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/, and plasmapherisis, a plasma exchange to rid the body of abnormal antibodies http://plasmapheresis.net.

Her doctor, then Staten Island surgeon, Dr. Najjar, speaks here about the professional isolation he felt due to the lack of collaboration between the disciplines of psychiatry and neurology.

This problem also exists for Lyme/MSIDS and must change.

Boy’s Lyme Disease Morphs into Autoimmune encephalopathy. It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain. Dr. Souhel Najjar, Cahalan’s doctor, heroically saves the day again.

(Trailer here) Zero Media Published 2017.

These stories are critical to share and with today’s technology we can do this easily. Please pass this on to every parent you know as it may save another life.

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

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2017/07/26/can-lyme-steal-your-mind/

Category:

Activism, Lyme, PANS, Psychological Aspects, Treatment

Should I Tell My Employer – I have Lyme Disease?

https://globallymealliance.org/howwhen-should-i-tell-my-employer-i-have-lyme-disease/ by Jennifer Crystal

THE CHRONIC ILLNESS CONUNDRUM. WHEN PERSONAL ISSUES ENTER THE WORKPLACE.

One of the many factors that led to my 2007 relapse was a huge research project I was doing for the magazine I was working for at the time. The incredible amount of energy and brain power that I put into the project caused my neurological symptoms to flare, until I was physically and mentally overwhelmed. My doctor suggested I take a week or two off work while I restarted antibiotics.

“But my editor doesn’t know I have Lyme,” I replied sheepishly.

“Why not?” he asked.

“I didn’t want her to think I’m not capable of doing my job.”

My decision to be secretive was born of fear: I was afraid of being judged, afraid of being defined by my illness, afraid of being seen as unreliable, afraid of losing the job I needed to help pay my medical bills. The irony was that by not telling my boss the truth about my health—and my limitations—I had worked myself into a situation in which I was incapable of doing my job.

Angst over when or if to tell an employer about one’s illness is a common and scary struggle for patients of any chronic malady. It’s especially tricky with a relapsing disease like Lyme, which can flare, and impact work ability, without warning.

I was lucky because I worked from home. I set my own hours, so as long as I met my deadlines, it didn’t matter what time of day I did my work. I could write and edit articles from my couch, in my pajamas, and my boss was none the wiser. I napped in the afternoon and no one knew.

Not everyone has the same flexibility. Some Lyme patients find themselves struggling to look alive from nine to five, wishing they could curl up under their desks. They come home exhausted, unable to do anything but sleep.

The flexibility of my job, however, had its downsides. I was paid by the hour. It was easy to forego social plans in favor of doing another couple hours of research. I lost my sense of work-life balance. How could I give myself downtime if I could be doing work and making money? The more hours I put in, the more money I made; the more money I made, the smaller the medical bills became, but the larger the medical issues grew.

After restarting antibiotics, I had such a bad Herxheimer reaction that I became bedridden and incapacitated. I couldn’t perform the daily tasks of living, let alone the duties of my job. I had no choice but to tell my boss the truth.

As I hesitantly explained my situation to her over the phone, she stopped me and said, “Oh, I knew you had Lyme…I read that article you wrote about it.” After attending my college roommate’s wedding in Florida in 2006—just as I went into remission—I’d written a piece about that experience for our college alumni magazine. I’d forgotten that my editor had gone to the same college, and received the publication. “I remembered that piece and have been so amazed with how much work you’ve been able to do in spite of all you’ve been through,” she said.

She offered to have me slow down for a few weeks, and when even that was too much, she hired a temp to cover me for a month. She didn’t sound annoyed, or frustrated, or put out, or any of the negative reactions which I’d imagined. Instead she said, “You are a critical part of this operation. I want to work with you through this. Just tell me how I can best help you and respect your needs.”

Had I been upfront with my boss in the first place, I would have saved myself the stress and anguish that contributed to my relapse.

It goes without saying that not everyone has such an understanding boss. Not everyone is able to take time off without jeopardizing their career, and not everyone can remain financially afloat if they do take a leave of absence. Many Lyme patients are the chief breadwinners for their families. In addition to their paychecks, they desperately need the health insurance their job provides, even though the work itself can lead to a relapse of the illness that requires insurance coverage in the first place.

It’s quite a conundrum, with no set answer.

One thing that is true across the board, though, is that Lyme sufferers and other patients of chronic illness are not in these difficult positions by choice. When I expressed to my doctor my concerns about telling my boss about Lyme, he said, “Having Lyme isn’t anything to be ashamed of. It’s not like a secret addiction or something you did to yourself. You were bitten by a tick—it could have happened to anyone. I think, if anything, your boss should be impressed that you’ve been able to do so much while managing this illness.”

He was right! Lyme disease wasn’t my fault. It wasn’t anything to feel guilty or embarrassed about. A good boss will understand that.

Ultimately I had to quit my job at the magazine. Unable to care for myself or pay my bills, I moved back in with my parents at 28- years of age. I was very lucky to have their help, but the move was a blow to my independence and my pride.

I kept my doctor’s words in mind, though, as I wrestled myself back into remission. Once I was well enough to work again, I understood the process, slowly, first volunteering, then taking on small freelance projects. I also reevaluated my interests and capabilities. I knew I couldn’t work in a pressured editorial position again, and I knew I couldn’t keep a traditional schedule. So what could I do? What was I passionate about? What was a career that offered a more flexible schedule?

My readers know the answer: I channeled my medical experiences into writing and teaching, et voilà, here I am penning this post. Do I still have fears that I’ll relapse and not be able to keep my commitments? Of course. But I’m upfront with my colleagues. And, most importantly, I’m upfront with myself about my limitations, and that honesty has made me capable of more than I ever could have imagined.

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

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**Comment**

For the other side of the story and reasons why you may NOT want to tell your employer: https://madisonarealymesupportgroup.com/2017/10/11/why-you-may-not-want-to-tell-your-employer-you-have-lymemsids/

I stand in amazement at patients who are able to continue to slog through work while in treatment. For those of you who do, please take this article to heart. You are in-between a rock and a hard place for sure, no question.

I’m thankful that more workplaces are becoming more flexible allowing people to work from home or have flexible hours. Chronically ill people need this flexibility.

The other issue that begs to be pointed out is the importance of educating others about this disease(s) as chances are they too will experience it personally or with someone they know. By sharing your experiences, you will inadvertently be educating more people and since mainstream medicine still has its head in the sand, if we want others to be informed, we have to do it.

Category:

Activism, Lyme, Psychological Aspects

It’s All in Your Head – Until Finally a Lyme Diagnosis

https://www.lymedisease.org/circuitous-route-lyme-diagnosis/

Jackie-Golan-300x289

My circuitous route to a Lyme diagnosis

By Jacquelyn Golan

Two years ago, if you had asked me to tell you about myself, it would have gone something like this: I am 30 years old. I co-own an event design company. I have a husband who is a successful songwriter and the love of my life. I have a pug named Peter who I adore. I like traveling to new places, trying new restaurants and hanging out with my friends and family. I just finished a six-month cooking course for fun. I love my life.

Worst Two Years Of My Life
Now, let me tell you about myself today. I am 32 years old. I have an incredible husband, loving friends and family who have stood by my side through the worst two years of my life. I am not able to work.

It is a huge accomplishment if I make it out of my house at all in a day. Cooking, once my favorite hobby, seems daunting and I must constantly search for foods that do not cause an allergic reaction. Everyday tasks that once seemed easy, now take every ounce of my energy to complete.

Two years ago, my life took a devastating turn. I had been feeling “off” for a few months. I was losing weight quickly and felt like the issue was stemming from my stomach. So, I went to a GI specialist. After my blood panel came back normal, he said whatever it is will pass and recommended I resume normal activity.

Shortly after, I went on vacation with my husband and in-laws. Then, all hell broke loose. I felt painfully weak and fatigued and began to have panic attacks, which I had never had before. It felt like they were triggered by something in my stomach.

I Really Thought I Was Going To Die
By the end of the trip, I was too sick to fly. We rented a car and drove 19 hours home. I really thought I was going to die. I kept asking my body to stay strong enough to make it home so I could die in my bed.

By the time we arrived, I had an array of symptoms: severe aches and pains, a burning sensation all over my body, brain fog, shortness of breath, severe fatigue, and heart palpitations.

For the next year and a half, I was primarily house-bound, except for doctor visits. I went back to the GI specialist, who now said I had small intestinal bacterial overgrowth (SIBO). I could not tolerate the antibiotics he prescribed. I stopped them and went to an internist who said I had leaky gut and started me on that protocol.

With little improvement, I went to yet another GI specialist who could also not find anything wrong with my blood panel. He said my SIBO was not bad enough to cause the symptoms I was experiencing.

He then suggested it was all in my head. As did the next internist I saw. That’s the worst, isn’t it? Why would I make this up? I loved my life. This is the last thing I wanted to happen.

I was so weak and malnourished, I felt like I was dying. Why could no one help me? I felt like giving up. If not for my strong support system, I might have.

Many more doctor visits followed. Cardiologists, endocrinologists, energy healers, acupuncturists. You name it, I tried it. Still, no improvement and no answers.

Finally, A Breakthrough
I then stumbled upon an integrative GI doctor who changed everything. I went there not expecting him to tell me anything different then the last specialist, but he did. He said my symptoms sounded like Lyme disease, and that he was sure my test would reflect that.

I was not convinced. I had been tested for Lyme twice before and both tests had been negative. I did the testing again anyway and there it was—positive for Lyme.

A range of emotions came over me. Sad, angry that I hadn’t been tested properly before, skepticism, relieved that I finally had a diagnosis.

He referred me to a Lyme-literate doctor and that is when I slowly started getting better. The LLMD put me on immune-boosting supplements, Lyme-killing agents and weekly ozone IV treatments, which would knock me out for days on end.

Today
Six months later, I am better but not yet back to myself. I still have setbacks. I have brain fog, aches and pains, food and chemical sensitivities, anxiety and fatigue. I continue with weekly IV treatments and take more supplements than I can count.

I still have days consumed by tears because of how much my life has changed. I still face excruciating thoughts rolling through my head. Is this my new normal? It can’t be. I won’t let it be.

I do think the worst is behind me and my goal is that when I am strong enough, I will dedicate my time to helping those with Lyme and co-infections. We need to build awareness. It is misdiagnosed way too often. Lyme hides. Proper testing Is essential. We need to make treatment readily available and affordable for those in need.

Until then, stay strong my fellow Lymies. And know that you are not alone.

Jacquelyn Golan lives in Los Angeles.

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**Comment*

This story has a common theme: vague symptoms that doctors completely underestimate which grow unabated over time leaving a person a shell of who they were before.

In this day and age with all the information that has come out about ticks moving everywhere, of stories such as this one, of the CDC finally admitting there are 300,000 NEW cases of Lyme per year with the actual number being much higher, and finally telling doctors to treat empirically without waiting for test results https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/, you would think TBI’s (tick borne infections) would be nearly the FIRST thing that goes through a doctor’s mind particularly in an endemic area.

Yes, Lyme isn’t everything but LYME CAN BE ANYTHING.

This is another story and example of how unprepared most doctors are to diagnose and treat one of the most complex illness(es) known to man. The writer does not mention coinfections but the fact she is so ill would indicate to me by experience that there is involvement, making her case even more complex. Also, it is widely known in the Lyme world that borrelia has many strains – one discovered recently – and the symptomology can present differently. https://madisonarealymesupportgroup.com/2017/09/11/new-borrelia-strain-lanei-discovered-named-after-dr-lane/

Please remember that current 2-tiered CDC testing uses ONE STRAIN. Can you see why so many test negatively? https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

For more: https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

Category:

Activism, Lyme, Psychological Aspects

Lyme and the Opioid Crisis – Dr. Bransfield

shutterstock_111707921

https://www.lymedisease.org/bransfield-lyme-opioid-crisis/

Re: Association between the opioid crisis and the Lyme epidemic

Greetings, Senators Serino and Hannon:

As a follow up to the meeting on Tuesday, I would like to add something that was not in my advanced written testimony. In the hearing, there were references by committee members to the opioid crisis.

As a psychiatrist, I deal with this problem as well as Lyme disease. I don’t think the link between the opioid crisis and the Lyme disease epidemic was apparent to the committee members.

I shall describe a representative case history describing something I have seen far too many times.

A young patient acquires Lyme/tick-borne diseases and the diagnosis is missed, dismissed and/or they are undertreated. The symptoms progress over a period of years to include psychiatric symptoms, chronic pain and other symptoms.

Eventually they are prescribed pain medications and/or other controlled substances or they acquire these medications through other means. Their use of pain medications (opioids) and other controlled substances increases and becomes an addiction.

They may then turn to multiple physicians, multiple pharmacies, illegitimate sources of drugs and/or turn to illegal activity.

They attempt to overcome their addiction, have a period of sobriety, then have some triggering event, relapse and take the dose of opioid they had previously used.

However, the period of sobriety altered their tolerance to the drug and that same dose is now a lethal dose. They are discovered deceased and everyone is surprised, puzzled and grief stricken.

The point I would like to make to the Committee is that inadequately diagnosed and inadequately treated Lyme/Tick-Borne Diseases as well as inadequately treated mental illnesses are contributing to the opioid epidemic.

Clearly not all opioid deaths are associated with Lyme or mental illnesses, but many are and better attention to both of these problems can contribute to reducing the severity of the opioid crisis.

Sincerely,

Robert Bransfield

**Comment**

I am so thankful for the boldness of treating Lyme/MSIDS physicians. They continually point out what is happening in Lyme Land even though the medical community at large continues to bury their heads in the sand. They refuse to see the desperate life threatening situations that tick borne illnesses (TBI’s) are capable of.

For more:

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

https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/ Besides suicides, Bransfield estimates around 14,000 incidents of self-harm and 31,000 suicide attempts may be attributed to Lyme and associated diseases each year. https://www.usatoday.com/story/news/nation-now/2017/07/19/how-lyme-disease-might-triggering-hundreds-suicides/493934001/ “It’s a constant action that comes up and isn’t adequately addressed in the scientific literature,” Bransfield said. “… Failure to adequately diagnose, failure to adequately treat and the progression of the disease over a span of many years often leads to suicide.”

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

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

https://madisonarealymesupportgroup.com/2017/07/26/can-lyme-steal-your-mind/

https://madisonarealymesupportgroup.com/2017/07/12/suicide-and-chronic-lyme-disease/

Category:

Activism, Psychological Aspects, research