Nicotine-Dopamine Connection-Smoking Part 2

Smoking-Part 2

Nicotine-Dopamine Connection?

In considering possible mechanisms that could cause psychosis, the authors note that previous epidemiologic and laboratory studies have shown evidence linking nicotine and the dopamine system, which would relate to a leading theory suggesting excess striatal dopamine to be a main cause of schizophrenia.

“In vivo, nicotine might increase dopamine release directlly…to a similar degree as other drugs of misuse,” they wrote.

Nicotine could possibly also wreak havoc on D2 dopamine receptors, commonly implicated in psychosis, they added.

“Nicotine could cause a change in the dopamine system…through induction of supersensitivity of D2 receptors, which has been proposed as an explanatory mechanism for several risk factors for schizophrenia and as a common pathway for psychotic symptoms.”

Finally, a key cluster of genes — CHRNA5, CHRNA3, and CHRNB5— on chromosome 15, which have been linked to schizophrenia in the largest genome-wide association study of the disease to date, also are associated with nicotine dependence and smoking behavior.

The authors acknowledge the study’s important limitations, including the small number of longitudinal studies and the inability to determine use of other substances, such as cannabis.

“Future studies, particularly longitudinal and prospective studies with larger sample sizes, should investigate the relation between daily smoking, sporadic smoking, nicotine dependence, and development of psychotic disorders,” they conclude.

Risk Factor?

In an accompanying editorial published along with the study, Helen L. Alderson, PhD, and Stephen M. Lawrie, MD, of the University of Edinburgh, United Kingdom, argue that the self-medication hypothesis and theory of smoking as a causative factor in psychosis are not necessarily mutually exclusive.

“The most likely explanation of these findings is that cigarette smoking is associated with an increased risk for schizophrenia,” they write.

“Taking up, and continuing, smoking could be self-medication for anxiety, depression, or psychotic symptoms. It could also be shared with other risk factors for psychosis, such as family history, urban upbringing, or childhood adversity.”

Along with regular cannabis use, the risk factors seem to have an additive effect to psychosis and age of onset, the authors add.

They agree that further research should include large, longitudinal, prospective studies focusing on those risk factors.

“To say that smoking causes psychosis would be premature, but the time might not be too much longer before cigarette smoking is recognized as a risk factor for psychosis as well as anxiety and depression.”

In further commenting on the study, Carol Tamminga, MD, professor and chair of the Department of Psychiatry at the University of Texas Southwestern School of Medicine, in Dallas, called into question several of the study’s suggestions, including the role of D2 dopamine receptors.

“The stringent demonstration of the role of D2 dopamine receptors in psychosis has not been demonstrated, let alone that nicotine has the same kind of effect,” she told Medscape Medical News.

“If this were true, then taking a cohort of 18-year-old adolescents and giving them nicotine would result in some degree of psychosis onset, more than placebo administrations.”

In general, the analysis should caution against the use of its associational data to claim causality, she added.

“[The authors] do admit that the effect is weak, and any of us would add that it seems inconsistent.”

“Cigarette smoking itself can have many other correlates which the authors mention but do not discuss, like the use of other addicting substances, probably poverty, and possibly early-life trauma. The authors really need to highlight these caveats.”

The study received funding from NIHR Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust (SLaM) and King’s College London. The study authors, Dr Lawrie, and Dr Tamminga have disclosed no relevant financial relationships.

Lancet Psychiatry. Published online July 9, 2015. Full text, Editorial

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Smoking and psychosis-Part 1

Smoking and psychosis-Part 1

The prevalence of smoking among people with psychosis is notoriously high, and smoking is often regarded as a form of self-medication, but a new analysis suggests smoking itself may play a causative role in the development of psychotic illness, new research shows.

“[Our findings] suggest to clinicians that we should probably be more aggressive in how we manage smoking in people presenting with psychosis, in much the same way as we now consider managing cannabis use in people with psychosis,” coauthor Sameer Jauhar, MD, an honorary consultant psychiatrist at the Maudsley Hospital, King’s College London, United Kingdom, told Medscape Medical News.

The study was published online July 9 in Lancet Psychiatry.

Self-Medication Hypothesis Debunked?

The analysis included 61 studies with data through 2014 involving 14,555 tobacco smokers and 273,162 nonsmokers. The studies included international populations, and two studies were from China, where smoking rates are lower than in Europe and North America.

The investigators hypothesized that if the high rate of smoking among people with psychosis was related to self-medication, then smoking rates could be expected to be normal at the time of the first psychotic episode and subsequently increase in reaction to the symptoms.

Instead, the analysis of case-control studies found that 57% of people with a first episode of schizophrenia were already smokers, for an overall odds ratio of 3.22 (95% confidence interval [CI], 1.63 – 6.33), with some evidence of publication bias.

A subanalysis of five longitudinal, prospective studies showed a more modest association, but daily smokers were still approximately twice as likely to develop new psychotic disorders as nonsmokers (relative risk, 2.18; 95% CI, 1.23 – 3.85).

In addition, those who smoked daily were found to develop psychotic illness approximately 1 year earlier than nonsmokers.

There was no significant difference in age of starting smoking between those who did, and did not, develop psychosis.

“We think that the earlier onset of psychosis and higher risk in smokers of developing psychosis (albeit based on few studies) calls into question the self-medication hypothesis,” the authors wrote.

The findings collectively satisfy the Bradford Hill conditions, which include strength, consistency, specificity, and other factors, for evidence suggesting a causal relationship between smoking and psychosis, the authors conclude.

Although Dr Jauhar said he knew of no evidence linking smoking reduction or cessation with a reduction in psychosis, previous research by his team, published in the British Journal of Psychiatry, has shown some reduction in symptoms in those who quit.

“Our [previous study] suggested that positive psychotic symptoms were increased in those with nicotine dependence, [and] what was interesting in that article was that quitters and nonsmokers showed lesser severity of positive symptoms than those patients with nicotine dependence,” he said.

“[However,] the other issue will be that if patients’ symptoms do increase, there is a high probability that this will lead to treatment-seeking, so it may be difficult to look at.”

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Low-dose naltrexone

By Dr. Mercola

It is not often that I advocate the use of prescription drugs, but low-dose naltrexone (LDN) is one of those rare exceptions that may hold the promise of helping millions of people with cancer and autoimmune disease.

As a pharmacologically active opioid antagonist, LDN works by blocking opioid receptors, which in turn helps activate your body’s immune system.

How LDN Harnesses Your Own Body’s Chemistry to Fight Disease

The latest research in Experimental Biology and Medicine just confirmed that LDN does in fact target the opioid growth factor (OGF)/opioid growth factor receptor (OGFr) pathway to inhibit cell proliferation. Previous research by professor Ian S. Zagon of The Pennsylvania State University, who also conducted the Experimental Biology and Medicine study, found that OGF regulates the growth of cancer cells, and all cancer cells use the OGF-OGFr pathway in growth regulation.

It is through this mechanism that LDN is thought to exert its profound inhibitory effect on cancer growth.

Further, LDN also works with your body’s immune system through its interactions with your body’s endorphins. Though most commonly referenced in relation to you mood, endorphins also play a role in pain relief, immune system regulation, growth of cells and angiogenesis (the growth of blood vessels that feed a tumor).

Typically, LDN is taken at bedtime, which blocks your opioid receptors, as well as the reception of endorphins, for a few hours in the middle of the night. This is believed to up-regulate vital elements of your immune system by increasing your body’s production of metenkephalin and endorphins (your natural opioids), hence improving your immune function.

In addition to cancer, LDN has shown promise for the treatment of the following diseases:

Hepatitis C Diabetic neuropathies
Lupus Dermatomyositis (an inflammatory muscle disease)
Ulcerative colitis Multiple sclerosis
Autism Crohn’s disease
Chronic fatigue syndrome Alzheimer’s disease
HIV/AIDS Hasimoto’s thyroiditis
Irritable bowel syndrome (IBS) Parkinson’s disease

How can one substance impact so many different diseases? As written on the non-profit Web site LowDoseNaltrexone.org, which is an excellent resource for more information:

“The disorders listed above all share a particular feature: in all of them, the immune system plays a central role. Low blood levels of endorphins are generally present, contributing to the disease-associated immune deficiencies.”

Impressive Results in Cancer Treatment

In 1985, Dr. Bernard Bihari discovered LDN enhanced patients’ response to infection with HIV, the virus that causes AIDS. Years later he found that his patients with cancer and autoimmune disease also benefited from LDN.

Dr. Bihari has reportedly treated more than 450 cancer patients with LDN with promising results, including cancers of the bladder, breast, liver, lung, lymph nodes, colon, and rectum. According to Dr. Bihari, nearly a quarter of his patients had at least a 75 percent reduction in tumor size, and nearly 60 percent of his patients demonstrated disease stability. He believes LDN’s anti-cancer mechanism is likely due to an increase in the:

  • Number and density of opiate receptors on the tumor cell membranes, making them more responsive to the growth-inhibiting effects of the already present levels of endorphins, which in turn induces apoptosis (cell death) in the cancer cells
  • Absolute numbers of circulating cytotoxic T cells and natural killer cells, as well as killer cell activity

An impressive study released earlier this year exemplifies LDN’s potential anti-cancer effects, in this case to treat ovarian cancer.

The study found:

  • LDN administered for six hours every two days reduced DNA synthesis and cell replication in tissue culture
  • Exposure to LDN in combination with cancer drugs had enhanced anti-cancer action
  • Mice with established ovarian tumors treated with LDN had repressed tumor progression by reducing DNA synthesis and angiogenesis — but not altering cell survival, indicating it is non-toxic
  • LDN combined with a chemotherapy drug, cisplatin, alleaviated the toxicity associated with cisplatin
  • LDN treatment upregulated the expression of the opioid growth factor, which is the only opioid peptide that tends to inhibit cell growth of ovarian cancer cells

Says Dr. Burton M. Berkson, MD, who has attested to achieving phenomenal results with low-dose naltrexone in both cancer patients and those with autoimmune diseases:

“It is difficult for many to believe that one drug can accomplish so many tasks. But LDN does not treat symptoms as most drugs do. It actually works way “upstream” to modulate the basic mechanisms that result in the disease state.”

Your Doctor Probably Doesn’t Know About Low-Dose Naltrexone

LDN has been an FDA-approved drug for over two decades, conventionally used to treat drug- and alcohol addiction at doses of 50mg to 300mg. Much lower doses (3 to 4.5 mg) are used for LDN’s immunomodulating properties as discussed above, but it has not yet been submitted for FDA approval at this low dose. None of the pharmaceutical giants back it, as at an average price of $15 to $40 for a month’s supply, the income potential isn’t very promising.

This means there are no friendly sales reps visiting your doctor talking about the potential benefits of this drug in very low doses, and as a result very few physicians are aware of LDN. So, if your physician is not familiar with LDN, you will need to bring it up to him or her, or, alternatively, seek a health care provider who is already knowledgeable at using LDN as a form of treatment. There are a number of pharmacies and compounding pharmacies in the United States and Canada that are reliable sources of the compound in low-dose form.

CAUTION: Important LDN Points to Consider if You Use It

  • Avoid slow-release (SR) or timed-release naltrexone. You want to be sure the LDN you receive is in unaltered form that allows you to receive the full dose quickly. Slow-release formulas may not give you the full therapeutic effects.
  • Be aware of inactive fillers. Part of the LDN capsule will contain a “neutral” filler material, however there is some evidence to suggest that calcium carbonate as a filler could interfere with the absorption of LDN. So to be on the safe side, avoid LDN capsules that contain calcium carbonate fillers.

Ideally, if you are interested in using LDN as a potential treatment consult with a knowledgeable health care practitioner who can guide your therapy and also help you find a reliable compounding pharmacy.

[+] Sources and References
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What it’s like when no one believes your sick.

There’s no way to explain illness to someone who hasn’t been ill. Like, seriously ill. It’s like saying “Enjoy your youth” to a teenager. And you can only say “I feel like I’m dying” so many times before it falls on deaf ears — and even doctors have deaf ears.

By the time I was diagnosed with Lyme disease in August 2014, I had been sick for two and a half years and seen 13 doctors. I was 33 years old.

It took that long, and that many doctors, for me to stop trusting the medical establishment and start trusting what my body was telling me: I am really sick. I turned to what is known by chronic Lyme sufferers as a “Lyme-literate doctor.” This is a doctor who sees my illness as a tricky, chronic infection that needs more than the recommended two weeks to one month of antibiotics. I’ve been on antibiotics nearly a year, and I may need years more. But I am finally getting better. And it is only because I stopped listening to the medical and scientific powers-that-be who told me this was all in my head.

This is my story.

Right before I got sick, I had never felt better. I had finally gotten over a bad heartbreak, after living in Europe for six months, and I returned to New York bursting with energy and goodwill. Spring hit early, and I was pathologically happy. I remember thinking, Please, please don’t let this feeling ever end.

My first coherent memory of my body’s revolt happened while I was at my new internship at a nonprofit. As I smiled at the cute intern sitting across from me, I realized that the right side of my face was numb. The next day, I went to the ER, where I waited six hours. When the doctor finally came around, I was crying because I was alone and hospitals feel like prisons. She asked me to smile, which I could. She told me it was probably just a vitamin deficiency, wrote down the name of a chocolate calcium supplement on her pad, and handed me my candy prescription.

Within a month of that first ER visit, I was so tired that no amount of sleep or caffeine could snap me out of it. The Fatigue was an entirely different animal from even being totally exhausted. And I had these horrible body aches that were deep and rolling and buzzing. Paired with the Fatigue, they pushed me deeper into an alternate reality as illness took hold.

I felt like I was dying.

I went from one useless doctor to the next. When I asked useless doctor No. 3 to test me for Lyme disease, which a psychiatrist family friend had suggested, he refused. He said that psychiatrists aren’t doctors and that there are too many false positives for Lyme. And my aches were muscular, not joint aches, which mainstream medicine considers one of the few objective signs of Lyme. That and a bull’s-eye rash from a tick bite. And I had no memory of ever being bitten by a tick.

My doctor prescribed an antidepressant, even though I swore I wasn’t depressed. To prove it, I exercised more, meditated every day, kept up social appearances. I discovered that I could force my body to do almost anything, even though all that felt physically possible was to stay in bed and watch Netflix, like, forever. I forced it to go out with friends. I forced it to wash my hair. I forced it to eat, but I lost weight anyway. To the outside world, I looked great. Apparently, you can’t be seriously ill if you look great. Sometimes I wonder: If I had stayed in bed until a concerned friend or family member dragged me out to the doctor and said, Something is really wrong with this girl, would things have turned out differently? Instead, I thought that looking presentable, having clean hair, and never letting myself cry until after I left the doctor’s office would get me better treatment. So I continued to smile through my numb face.

Lyme disease first appeared in the 1970s in Old Lyme, Connecticut, where a cluster of children mysteriously came down with juvenile rheumatoid arthritis. It wasn’t until 1981 that researcher Willy Burgdorfer identified that an organism carried by deer ticks was the culprit for these arthritic symptoms. This bacterium, named Borrelia burgdorferi after Willy, is shaped like a spiral and called a spirochete. The spirochete can drill into any part of the body and affect every organ system, from the joints to the brain, and like syphilis (also caused by a spirochete) is a “great imitator” of a myriad of other diseases: rheumatoid arthritis, MS, fibromyalgia, chronic fatigue…and mental illness.

Most Lyme cases are caused by infected nymph ticks, infant ticks that are poppy-seed-sized. Their bites are often painless and go unnoticed by their human hosts. They transmit the Lyme bacteria — and a host of other co-infections that can make you just as sick — through their bite within 36 hours of attaching themselves to your body. One of the telltale signs of Lyme can occur within the first few weeks of being bitten: a circular rash with a red outer border (hence the “bull’s-eye”), along with joint aches and flu-like symptoms.

According to the International Lyme and Associated Diseases Society (ILADS), fewer than 50% of patients with Lyme disease recall a rash and fewer than 50% of patients recall getting bitten by a tick.

I still don’t know how I got Lyme disease. But after I had been to several doctors, I remembered that I had been in the Hamptons six months before I got sick, walking barefoot in the grass. There are a lot of deer in the Hamptons. Deer carry ticks. Your body can harbor the Lyme bacteria and when triggered present a slew of confusing symptoms.

So many of us don’t have the rash. So many of us pass off any flu-like symptoms as, well, the flu. To complicate matters, there is no effective blood test for Lyme disease. The ELISA test, which most doctors following CDC protocol will give you, only has 65% sensitivity. You have to “pass” the ELISA test to move on to a more sensitive Western blot test. And the longer you have been sick without treatment, the more likely you will have a false negative on this two-tier testing approach, which misses up to 50% of cases.

The only thing I knew about Lyme disease before I got sick was from a friend in grad school. We became friends on the first day of our MFA program and often rode the subway together to and from school. She told me she had Lyme disease, didn’t know how she got it, and was on antibiotics that made her really tan that summer when I visited her and her boyfriend in the Hamptons. She looked fine to me, and she never complained, so I didn’t ask much about it, if at all.

It was only until I got sick myself that I learned that Lyme disease, unbelievably, is a political disease. There are some seriously warring sides. The Infectious Disease Society of America (IDSA) dictates the diagnostic and treatment guidelines that doctors and insurance follow. In cahoots with the CDC, it recommends only a few weeks of antibiotic treatment. If you’re still sick after that, you have “post-treatment Lyme disease syndrome,” for which it offers no medical treatment except to suggest counseling. As exposed in the documentary Under Our Skin, health insurance companies use the IDSA guidelines to restrict diagnosis and deny treatment — and save costs.

In the opposite camp, there are doctors who are losing their medical licenses for treating Lyme disease aggressively with long-term antibiotics. They see the disease as complex and persistent, one that can evade the immune system and antibiotics and faulty testing. The IDSA dismisses the existence of chronic Lyme disease and the doctors who continue to treat your ongoing infection as “quacks.” And yet there are countless testimonies from patients that these quacks gave them their lives back.

Recently, I came across a picture in my iPhoto library of me dressed as Aphrodite on Halloween. It was taken while I was living in Barcelona, five months before I got sick. In the photo, my new, dashing foreign friends surround me and I am having the exciting experiences that a young woman goes to Europe for. When I look at the picture now, I think, She has no idea what’s coming. I also look at her fondly, like a sister, but someone who is not me. I know other people look back and mourn that person they were before. I don’t. Sure, there is enviable health and innocence in that young woman masquerading as the goddess of love. But I see her as someone who was often trapped in the headspace of her own sadness and heartbreak. I see someone who was really hard on herself — and now my life is all about making everything easier for myself. In a way, I am much more carefree today than I was then. I just have to seize those moments.

Make no mistake, I never think of this disease as a blessing in disguise or as a teaching or as something that happened for a reason. My body is a prison and, at times, a hell. But it has really tested my convictions: to write, to help others, to find love. How badly do I really want these things? Badly, it turns out.

To prove to useless doctor No. 3 that I was a good patient, I went to a therapist. The hourlong subway ride to her office felt like climbing Mount Everest. And not just because I had zero energy. My body had become an exposed network of nerves, and the subway was a hell of sensory overload. Basically, riding the subway — something I had never thought twice about before — was one long anxiety attack. The therapist told me that the Fatigue was definitely a symptom of PTSD from a sexual trauma that happened when I was 15. She promised that if I came twice a week she could get me through my “somatization.” Desperate, I signed on. As the therapist scrutinized my face for revealing micro-movements, I struggled to find words for what my numb face was trying to “tell me” about once getting punched in the face.

I went to my brother’s wedding, even though I felt like I was dying that day. My family was too distracted by the wedding to pay attention to my “psychosomatic” illness. Anyway, the therapist had counseled me to “fake it until I make it.”

Four months and $7,000 later, the therapist dumped me. I didn’t even know shrinks could do that. She said something about her hands being tied, which is what my doctor had said when I refused to take his antidepressants. Even though I strived to be otherwise, I was being told, again, that I was an uncooperative patient. I had felt like I was dying. Now I felt like killing myself.

Around this time, I started an eight-month yoga training run by my longtime yoga teacher. Committing to my spiritual practice was something I had planned on doing before I got sick. Plus, there was the promise that this intensive training would excavate and reclaim energy lost to an unhealthy ego. When I interviewed with one of the teachers in the training, I was up-front about my mystery fatigue. He suggested, in his thick Eastern European accent, “Maybe you’re so tired because you’re too busy thinking about yourself and not others.” I looked at him, and he just shrugged.

Sometimes my yoga teacher spoke about the Spirit of Gravity that tries to mess with you when you lean into your spiritual practice. I considered that an invisible, malevolent force was wreaking havoc in my body as a spiritual test. To me this wasn’t any crazier than another doctor telling me that happiness can be a source of stress.

Winter hit and I became too sick to work even my part-time, work-from-home job. Sickness had become my job. There were long commutes to doctors’ offices way uptown. There were hours on the phone arguing with insurance. Waiting rooms. Maybe I could have kept this up if I had a partner to help me. You know, for the in sickness part. Really, I just needed someone to tell me every day to keep going.

I flew home to California so that my parents could take care of me. Being 32 and single and staying with my parents for an indefinite period of time wasn’t exactly what I had planned for my life.

It was spring again and I dragged myself back to New York to see an integrative MD on the internet-fueled theory that I had adrenal fatigue. Integrative meant that she combined Eastern and Western medicine — and didn’t take insurance. She looked at my tests from all my useless doctors and told me that I had Lyme disease.

She showed me a test that an esteemed rheumatologist had given me when I asked her to test me for Lyme. Right there — amid number ranges and other things I had no clue how to read — was the bold-faced word positive.

But the rheumatologist had told me that I didn’t have Lyme! Confused, I brought the test to a reputable infectious disease specialist to get a second opinion on what this integrative MD had said.

He was adamant that I didn’t have Lyme disease and that I shouldn’t let anyone convince me otherwise. When I asked him what was wrong with me then, he suggested chronic fatigue, or maybe fibromyalgia, while admitting they were “wastebasket” diagnoses — that is, arrived at through process of elimination. I literally looked at the wastebasket in his fancy office as he said this.

But I knew something was really wrong with me, and so I started taking the antibiotic doxycycline that the integrative doctor prescribed. My body became a killing field. When the Lyme bacteria die off, this thing called herxing can happen. Your immune system wigs out and aggravates your symptoms. For me this meant that my whole body would throb and pulsate with aches worse than I had ever felt. The only thing I could do was soak in really hot Epsom salt baths, almost passing out from the heat, until the throbbing subsided.

I scoured illness narratives, trying to glean from them how to cope, and yet in the background of every one of them there was a faithful boyfriend or doting husband. I didn’t have that. My family was 3,000 miles away. So I took myself to a support group in the same hospital where the rheumatologist told me I didn’t have Lyme disease. A man ranted about the lesions in his brain. A nice woman with her hair falling out showed me the PICC line implanted in her arm for IV antibiotics. Stories of going blind. Stories of not being able to walk, think, or read. Seizures. This was Lyme disease, and I cut out early and sobbed on the subway ride home.

After four months of taking antibiotics, I still didn’t feel better. The integrative doctor said maybe it wasn’t Lyme disease after all. She suggested that I see a cognitive therapist to work on my “fear-based thinking,” a therapist to whom she sent her more “difficult” patients.

A year passed.

This is the year that I lost friends. My iPhone Contacts favorites diminished to two friends and my mom.

What was wrong with me? It was all I could think about; it was all I could talk about. I gave up on doctors. Friends, even the ones who had really been there for me in the past, gave up on me. When I did go out, I was masquerading as a well person.

My best friend, who stuck by me, put me in touch with a girl my age who had fibromyalgia. At this point, I halfheartedly resigned myself to this incurable, lifelong condition. At least it was something I could tell my boss and keep my job working from home during the few hours a day I had energy. Really, I wanted to know from this girl: How do you live?

Turns out, she just told people she had fibromyalgia because most people didn’t understand that she could be sick for five years with Lyme disease. Over the phone, we compared our Western blot tests and we had identical positive antibody bands. I was so happy, and so angry.

Then she gave me the name of a Lyme-literate doctor who would not think this was in my head.

When I was 20 years old, a New York City cab driver read my palm. He said I would meet a wonderful man, when I was in my thirties, who would make all the heartbreak worth it. He looked at my lifeline. There is a broken spot, and then it continues. He told me I would get sick and then get better and live a long life.

When I’m alone in my apartment and herxing so badly that I’m curled up in a terrified animal state, I look at my palm and it soothes me.

I tell myself it’s OK to watch every romantic comedy on Netflix and not feel guilty. Guilty pleasures are part of coping, and coping is part of getting better.

I’ve given myself permission to say no to anything and everything that is not necessary to my survival. This is my body. My most important job now is to take care of it.

“Don’t let this disease control you.” I spoke on the phone with a woman who was treated for Lyme disease for 10 years, and is now totally fine. When I asked her how she got through it, she said she always knew that she was going to get better — and wasn’t going to give up her life.

 

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Her Brain was on fire.

Her Brain Was On Fire: A Neuroinflammation Story By Cort Johnson on July 24, 2015 44 Comments 0 inShare 0 +100%- A Neuroinflammation Story Who knows how it started? Did those two mysterious red dots on a vein on her arm mean anything? Could that businessman who sneezed on her in the subway triggered her illness? Or did her biological stars just suddenly align in the strangest configuration ever? Susannah went from healthy to psychotic with terrifying speed Susannah went from healthy to psychotic with terrifying speed Nobody ever figured out what triggered Susannah’s “month of madness” and in the end it didn’t matter. What mattered was that a young New York Post reporter quickly got very ill and for quite a while nobody knew what to do about it. This is not a story about chronic fatigue syndrome or fibromyalgia but it could be. The subplots running through it – a woman with the mysterious illness, the predisposition to look for a psychological cause, the negative test results, the misdiagnoses, the strange “brain” symptoms – could be patched onto many ME/CFS and FM stories, and indeed other mysterious illness stories. Susannah’s story shows how bad neuroinflammation – a possible cause of chronic fatigue syndrome and/or fibromyalgia – can get, how much remains to be learned about the brain and at the same time how quickly the medical researchers are moving forward. Ultimately her story provides hope for people with mysterious central nervous systeme disorders. Susannah chronicled her story in a best-selling book called “Brain on Fire: My Month of Madness“. Her Brain on Fire Susannah Callahan was a young talkative, funny and dedicated New York Post reporter when her month of madness began. First came a unreasonable fear of bedbugs, then a flu-like episode, then a search through her boyfriend’s emails and letters. Even as she was appalled at the boundaries she was breaking she keep breaking them. She didn’t feel like herself; she was anxious, nauseous and unsettled. When her left hand went numb her gynecologist fixed her up with a neurologist described as “one of the best in the country”. Except for some swollen lymph nodes. though, all her tests were normal. Maybe, he said she had mono. Basically he told her she was OK and to relax. But she wasn’t. Over the next week she had trouble sleeping, was overwhelmed by the colors and bright lights in the city, and her erratic behavior increased. Her moods whipped from one extreme to the other. She thought she was having a nervous breakdown. When she had a seizure in the middle of the night her boyfriend called 911. overstimulation Crowded, visually stimulating environments began causing Susannah problems GET OUR FREE ME/CFS AND FIBROMYALGIA INFO New-postsLike the blog? Make sure you don’t miss the latest on ME/CFS and FM treatment and research news by registering for our free ME/CFS and Fibromyalgia blog here. Back to the neurologist she went. He proposed she was working and partying too hard and not sleeping. All she needed was rest and to get off the booze. A psychiatrist diagnosed her with a form of bi-polar disorder and put her on medication. Meanwhile her descent continued. Wild paranoid thoughts filled her mind. She accused her parents of kidnapping her. She tried to dart out of a moving car. Despite the seizure medication she had another one. Back again to the prominent neurologist she went – this time with her mother – who demanded more tests and better answers. After a normal EEG, however, the neurologist again diagnosed her with alcohol withdrawal. Despite her mother’s protests that her daughter had not had a drink in a week, the neurologist told Susannah to stop drinking and take her medication. (In his notes he reported she was drinking two bottles of wine a night). Psychosis Her mother would have none of it and Susannah was booked into 24 hour epilepsy EEG monitoring unit at the New York Langorne Medical Center. As she entered the hospital she had a massive seizure. Her delusions mounted. She asserted her parents were turning into other people. She felt people on TV were talking about her. She tried to escape. She declared she had multiple personalities. She became so unmanageable she was in danger of being admitted to a psychiatric hospital. Hints were made that that was a place she wanted to be. Five doctors were quickly on her case. Four days later four more including an infectious disease specialist joined on. As her psychoses began to recede leaving her in a zombie-like state at times a lumbar puncture was scheduled. options limited With her options running out Susannah was in danger of ending up in a psychiatric ward – perhaps permanently The slightly elevated levels of white blood cells found – the first abnormal test results yet – raised hopes she had an infection but further testing at the CDC and New York State Labs found no signs of infection (herpes, Lyme disease, tuberculosis or others) or autoimmunity. Her MRI and CT scans continued to be normal. When a top doctor abruptly quit her case her parents became distraught. With few positive test results and her options running out, Susannah was in danger of being diagnosed with a mental disorder and ending up, perhaps for the rest of her life, in a psychiatric hospital. Then one more doctor, Dr. Souhel Najjar joined the team. Najar’s ability to solve some mystery cases at the hospital had made him the go-to man for difficult cases. He discarded the psychosis diagnosis and despite the negative autoimmune test results he put her on five rounds of IVIG. Join Health Rising’s ME/CFS, FM and Chronic Pain Forums! ForumsShare your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here Encephalitis Susannah, however, continued to worsen. She was diagnosed with catatonia and began making strange Frankenstein-like movements with her arms. Najar ordered another lumbar puncture. This time there was good news; a quadrupling of her white blood cell counts indicated central nervous system inflammation was present – lots of it. Her diagnosis was immediately switched from psychosis to encephalitis. brain inflammation It turned out that inflammation – eating away at key areas of her brain – was causing her problems. Najjar’s first examination of her proved to be groundbreaking. When asked to draw the numbers on a clock she fit all twelve hours into the right side of the clock leaving the left side blank. That clue suggested that the right hemisphere of her brain have been ravaged by inflammation – probably by an autoimmune process. Her brain, he said, was on fire. The probable next step was steroids, plasmaphoresis and/or more IVIG. First, though, Najjar wanted a brain biopsy. Reluctantly her family agreed. The biopsy showed massive numbers of microglial cells attacking her nerves. The biopsy indicated Susannah had an as yet undiagnosed autoimmune disorder. (She had been tested for only a few out of the hundred or more autoimmune disorders before). The treatment regimen was brutally simple: massive doses of steroids infused into her over three days to stop the immune attack in its tracks followed by lower doses to quell the remaining inflammation over time. Meanwhile her blood was sent to a Dr. Joseph Dalmu at the University of Pennsylvania. The results came back positive. A New Disease Four years earlier Dalmau had described four young women with psychiatric symptoms and encephalitis. Testing revealed NMDA-receptor antibodies were attacking the hippocampus – the center of memory and learning – and the frontal lobes – the center of higher functioning and personality. Two years later Dalmau published an account of twelve women with what he now called anti-NMDA receptor autoimmune encephalitis. A year later a hundred women had been identified. By the time Susannah because ill over 200 had been. When her results came back, Susannah Cahalan was the 217 woman to become diagnosed with the illness. In retrospect, the course of the disease had been very clear. The initial flu-like symptoms reflected the immune system starting it’s ramp up. The psychiatric symptoms occurred as the antibodies attacked the nerves in her hippocampus and frontal lobes. The catatonia was the result of progressive damage. Recovery The brain is radically resilient. Susannah Cahalan The steroids probably saved Susannah from entering a life-threatening stage of catatonia but her brain damage was severe. She was extremely cognitively challenged and had trouble speaking and smiling. Whether she would ever return to her former self was unclear. brain cells A new subspeciality – autoimmune neurology – has emerged. Najjar decided Susannah was too ill to try anything but the nuclear option. He would hit her overactive immune system as hard as he could and in as many ways as he could. Susannah would again get massive doses of steroids, but this time they would be followed by plasmaphoresis to purge her body of the antibodies, and then IVIG to further neutralize the antibodies. She would do this several times. Over the next six months or so she would get 12 IVIG infusions. Besides this she would be on five drugs: Atvian to prevent catatonia, Geodon for psychosis, Trileptal for seizures, Labetolol for high blood pressure and Colace for constipation and get speech and cognitive retraining. She began a slow recovery. A month later she wrote that her first real glimpses of recovery had occurred. Five months later she made her first tentative return to work in the New York Post newsroom. A couple of weeks later she dropped her anti-anxiety and anti-psychotic drugs. A year later she felt she’d returned to full health. Conclusions ..I realized now that my survival, my recovery – my ability to write this book – is the shocking part. ” Susannah Cahalan Susannah was one of the lucky ones. Without the seizures (not everyone has them) she would have ended up in the psych ward instead of the epilepsy ward. Perhaps she would have found another Najar there – a doctor on top of his game who was aware of a rare disease that had been recently discovered – but there’s no telling. However it happened she was lucky Najar. (Another case mentioned in the book describes a more typical story. A sophomore in college became paranoid, checked herself into a psych ward, was diagnosed with “psychosis, not otherwise specified”, sedated and released. A month or so later she was admitted to another psychiatric institution. The doctor there rejected the anti-NMDA receptor hypothesis because she wasn’t having seizures. She returned home and eventually became unable to add or do basic physical tasks. She returned to the hospital where her doctors, for the first time, informed her parents that her MRI test a year before indicated she had inflammation. As they prepared the IVIG a blood clot in her brain caused a massive seizure. During her seizure her father pushed Susannah’s article describing her illness into the neurologists hands. Her test for anti-NMDA receptor encephalitis was positive and she was air-evacuated to the University of Pennsylvania where Dr. Dalmau successfully treated her. She returned to complete health. (Despite proper treatment about 20% of patients are permanently disabled or die. Thanks to the work of Dalmau, Najjar, Susannah and her book those kinds of stories are disappearing. Since Susannah has diagnosed in 2009 over 2,000 women have been diagnosed with the disease. The New York Langone hospital also responded well. It put ten doctors on her case and her treatment costs were over $1,000, 000. There’s something comforting about the extent to which the medical system can go at times. Susannah’s story also revealed the limits of medical technology and how difficult making a diagnosis is the face of limited test findings. Susannah’s MRI’s and CAT scans were never abnormal. Even after she’d had seizures, psychotic episodes, sensory distortions and trouble writing and responding to people the wide blood cell counts in her lumbar puncture – indicating inflammation – were not particularly high. Her possible diagnoses at that point included hyperthyroidism, lymphoma, Devic’s disease and paraneoplastic syndrome. Only after she started drifting into catatonia were the markedly increased white blood cell counts indicative of severe inflammation present – and only after her antibody tests came back was her diagnosis ensured. Movement in the Medical Community Anti-NMDA-Receptor-Encephalitis has surely been around for many years. A search through the medical literature revealed some case reports dating back to the 1980’s but that was it until 2005. Once the disease had a name and a test progress was pretty rapid, however. At the time of Susannah’s diagnosis in 2009 Najjar believed that 90% of the cases went undiagnosed. Subsequent research suggests that was probably an underestimate. Dalmau’s found other receptor seeking autoimmune diseases since then. He believes by the time it’s all said and done more than twenty autoimmune diseases may be causing cases of”unidentified psychosis”, “encephalitis of unknown origin” and other idiopathic diagnoses. The understanding of the role anti-NMDA antibodies has broadened as well. They are now believed to play a role in at least some cases of autism, schizophrenia and dementia. Enough evidence has accumulated for a subspeciality called autoimmunity neurology to appear. It’s clearly a growth field. Susannah’s story is ultimately a hopeful one. The medical research community is responding. How many people with a now mostly treatable disease entered and remain in psychiatric wards is unknown, but since 2009 thousands of women have now been identified with the disorder. Susannah and others have created the Autoimmune Encephalitis Alliance to help spread the word. It’s not at all clear how, if at all, any of this applies to ME/CFS or FM. Autoimmune encephalopathies, after all, are still believed to be quite rare, but anything that helps explain central nervous system disorders that have defied comprehension is of obvious interest. That the medical community can move so quickly when it feels it’s onto something is encouraging as well. Next Up – Health Rising takes a deeper look at new world of autoimmune central nervous system disorders and Dr. Dalmau’s continuing work. Print Friendly Version of this pagePrint Get a PDF version of this webpagePDF Categories : Homepage Comments Pris Campbell says: July 24, 2015 at 4:12 pm Thank goodness one doctor finally had the knowledge to help her. This article illustrates all over again how so many doctors, when faced with symptoms they don’t understand, either call the person crazy or give stupid advice( stop drinking, when she wasn’t) . There’s a strong need for a computerized data system that doctors can use to plug in symptoms and have a variety of diagnoses to consider…if they would use it. Reply Cort Johnson says: July 24, 2015 at 8:42 pm Indeed, in the first neurologists defense a bit – Susannah later met a women in the epileptic ward suffering from seizures and other problems because of alcoholism – so it can happen. The neurologist clearly leapt to a conclusion – based on little evidence – and then stuck with it despite her continuing to get worse over time. Reply Greg says: July 24, 2015 at 11:00 pm If these cases offer an indication that neuro-inflammation may be a component of ME/CFS, does it explain how exercise/physical exertion directly causes a worsening of symptoms? And does it lead to any good guesses as to types of treatment that might lesson that effect? Anyone? Reply gloria says: July 24, 2015 at 4:39 pm why has my rhuematologist NOT referred me to a nuerologist for my “fibromyalgia” and chronic fatigue? it is hard for me to believe that there is nothing more to be found; this is a disorder that has very very hidden causes and i guess most of us aren’t worth the ‘cost;’ and so many of us just don’t have the energy anymore for dr appts or the costly co pays these tests cost; she-susannah had a support system and obviously good benefits and/or money Reply Linda says: July 24, 2015 at 5:09 pm All women sufferers? Odd. Reply Cort Johnson says: July 24, 2015 at 8:39 pm It’s another autoimmune disorder that primarily affects women. Reply David Fantle MD says: July 24, 2015 at 5:27 pm NMDA encephalitis does affect females much more often than males. We have diagnosed and treated a number of people with this disease over the past few years. The first one I recall was a young woman who, like the case you described, developed paranoid delusions and severe memory loss, and was admitted to the hospital psychiatric unit. While she had no clinical seizures, I read her EEG study and found frequent ‘silent’ seizure activity. This disease is often triggered by the immune system attacking a particular type of tumor, a teratoma of the ovary (which cross-reacts with brain tissue), which is what this patient ended up having. Removing the tumor often leads to recovery from the encephalitis. In neurology, we do often see psychiatric disorders that are masquerading as neurological ones, but also, like this, can find people with what appear to be primarily psychiatric symptoms, that are being caused by organic disorders that need to be discovered and treated. It makes for a challenging and fascinating relationship, and so rewarding when someone like this can be brought back to being them self again! Reply TAE PARK,M.D says: July 24, 2015 at 7:38 pm the basic pathology of me/cfs is neuroinflammation look at the study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4129915/figure/F2/ Reply EC says: July 25, 2015 at 7:12 am Does this suggest that some neuroinflammation starts in the sinus cavities? My first chronic problem was seasonal allergies 35 years ago. Then I developed fibromyalgia, then a few years later rheumatoid arthritis and a decade after that cfs. I’ve always thought they were connected. Reply TAE PARK,M.D says: July 26, 2015 at 12:18 am Trends Neurosci. 2009 September ; 32(9): 506–516. doi:10.1016/j.tins.2009.05.009 IF YOU LOOK AT THIS STUDY,CYTOKINE PRODUCED IN SIDE OF THE MICROVASCULAR SYSTEM:TNF-ALFA,IL-1BETA,IL-6–ALL LIKEY TO EXPLAIN YOUR RHEUMATOID ARTHRITIS,FIBROMYALGIA. Reply TAE PARK,M.D says: July 28, 2015 at 2:52 pm port of entry of pm.2.5 and UFP is nose and throat. it is so natural you will have sinus infections and allergy problem. then the pm2.5 travel through olfactory nerve–all the way to the brain frontal lobe and temporal lobe–which is the most common site of neuroinflammations of cfs/me Reply Cort Johnson says: July 24, 2015 at 9:15 pm The fact that she and others can make complete recoveries from such a debilitating and severe illness is one of the most astonishing things about the illness. Susannah was one of the patients who did not an ovarian tumor. Interestingly, it appears that patients with ovarian tumors are less likely to relapse. Because she had no tumor Susannah is more likely to have a relapse. Nobody knows why some people relapse at some point. Reply Alyson says: July 27, 2015 at 9:49 pm You likely have lyme disease. It is often misdiagnosed as ms or fibromyalgia. Tests for lyme are typically inaccurate. You will need to find a lyme literate doctor who will se d your blood to Immunosciences Lab in CA, and do a Western Blot test. It is the only test that is accurate. Best of luck! I have lyme… but was misdiagnosed for a whole year. Now imthe bacteria is riddled in my brain..causing lots of nerve and neurological symptoms. Reply Meg says: July 24, 2015 at 6:46 pm That is an amazing story Cort, and you write so well. Congratulations for bringing Susannah’s story to life. How wonderful that she herself has lived to tell the tale. One wonders how many other people with curable illnesses, as you say, die neglected in psychiatric institutions. I remember with deep regret a time when I should have ‘done something’ and didn’t, or couldn’t. I was a young physiotherapist doing a locum at a public hospital in the north of England. The hospital had been a poor house, and the stigma had persisted. Standards of care were low. I was called to clear the chest of a woman in a psychiatric ward who I was told had pneumonia. I soon realised the situation was far beyond my ability to make a difference. She was extremely ill, virtually unconscious and unable to cooperate. I was baffled that there was no line in for IV antibiotics, as I would have expected from her condition. I doubt she would have been capable of taking them orally. When I read her notes I was appalled. She was in her fifties and had been admitted a week previously after several days of personality changes and confusion. Why she was not shifted straight to a medical ward for proper diagnosis and treatment when her chest symptoms became apparent I have no idea, but I felt powerless (especially in the rigid hierarchical system of England at the time) to question the doctors. I thought of lying in wait for her family members and expressing my concerns to them, but in the end I didn’t do that either. Whether it would have made any difference if I had I will never know. I don’t know what became of her. I expect she died. There. Off topic or only tangentially related, but it has done me good to get that down. I haven’t written about it before and rarely talk about it, but I learned a lesson and am much more inclined to fight for those who can’t protect themselves now, and of course I have had to fight for myself as well. There is a lot of injustice in the medical system. Reply Ria Roegiers says: July 25, 2015 at 5:07 am It must have taken courage Meg to write this. I guess anyone of us working with people experience (if not denied) situations where we know we aren’t doing the utmost to help others … And the only thing we can do to put this ‘mistake’ right is by learning from it. Reply Chris Cantor says: July 24, 2015 at 7:54 pm Cort, your coverage of this is potentially misleading in a detrimental polarising way (either psychotic or not). You usually write brilliantly and I greatly appreciate your efforts but not this time. Some of the symptoms you described – e.g. delusions – effectively are diagnostic of a psychosis. From there doctors, even psychiatrists, take the next step of considering whether the psychosis could have an organic (disease or lesion) basis. [As a psychiatrist myself in psychotic patients I have diagnosed (often with the help of colleagues) encephalitis, brain tumours, epilepsy and more, sometimes with happy endings.] Once an organic basis has been excluded doctors only then settle on the “functional” psychoses e.g. schizophrenia, etc. If the illness is a newly discovered one that few doctors have ever heard of, is it surprising it could be missed? The issue of medical negligence and contempt for CFS patients is a very serious one that I am vaguely thinking of writing a paper on. However, if those of us concerned about the problem misrepresent it, doing so makes it all too easy for inept doctors to respond with more contempt suggesting that we don’t know what we are talking about. Reply Cort Johnson says: July 24, 2015 at 8:48 pm I agree that it’s not surprising that the diagnosis was missed. Actually it was surprising that it was found. I may not have brought that out clearly enough. One thing I wanted to show was how lucky she was to be in that hospital with that doctor. It appears I missed the boat on the dangers of being in the psych ward as well. It was strongly hinted in the book by the people running the epileptic section that she might be moved to the ‘psych ward” and that was a place she didn’t want to be because she wouldn’t get the kind of attention she was getting there. It appears that that is not necessarily true and I’ll amend the blog. Reply Greg says: July 24, 2015 at 10:15 pm I encourage you to write that paper, Chris. I personally can’t think of a group of severely ill people more unrecognized and mistreated/untreated in relation to the severity of disability than the ME/CFS crowd. And by the nature of this illness, most of us aren’t in much of a position to make much of a protest ourselves. Thanks. Reply marcie myers says: July 27, 2015 at 10:56 pm Dear Dr. Cantor, I was dx’d with CFS in 1994 and quit my nursing career in ’99. Since 2000, I’ve had 3 separate events that I can only call “psychotic breaks” but lasted less than 24 hours, one for only 4 hours and then, aside from the physical place that I found myself, e.g. the ER in 4-point restraints and then transferred to a locked psych unit for the weekend and then discharged with no medication or in an ICU being moved for the weekend to a locked psych unit and after a 15 minute session with a group of Medical College of GA psychiatrists during that time was quickly diagnosed Bipolar Type II. All of my labwork by the way was negative for any drugs or alcohol, including aspirin or ibuprofen so I mean negative when I say it. I have no idea what caused these extremely short-lived bouts of “psychosis” but I cannot deny that I was out of body and unaware of self during that period of time and have no memory whatsoever of the events during those short periods of time. I do feel that it’s somehow connected to the neuro inflammation of my CFS/ME but will never know what the bottom line is or if it will ever happen again. If nothing else, it was interesting and entertaining once the restraints were d/c’d and I was out on the locked floor entertaining myself with the other truly mentally ill patients and assisting them in my nursing and nurturing and good-natured fashion. Why these events would last for only a number of hours is truly the mysterious part of it to me; that without medical or psychiatric intervention I would become once again alert and oriented though no memory of the past event. Have you seen such before in your practice? And, guys, cut me a break on this story; it’s not one I repeat very often as it makes so little sense and I am fine thereafter except for having freaked my family and friends out. MM Reply Carollynn says: July 27, 2015 at 11:07 pm Thank you for your courageous and earnest comment, Marcie. Such horrific extremes of symptoms must reveal something about the other comparatively benign, though disabling, symptoms. Reply Becca says: July 24, 2015 at 8:10 pm There is much injustice in the disease management system. Most doctors do their best and want the best for their patients but are rarely trained in the courageously creative, out-of-the-box thinking displayed by Dr. Najar. Several years ago Dr. Mary Ackerley, a psychiatrist and the former Director of the Arizona State Homeopathy/Integrative Medicine Board (Summa Cum Laude from Johns Hopkins, mycotoxin certification by Dr. Rich Shoemaker) wrote a groundbreaking article “Brain on Fire” which became very well known. In it she succinctly described the severe behaviors from mycotoxin illness, which produces all kinds of brain and other inflammation symptoms mimicking numerous conditions, as undiagnosed syphilis does. Mold/Lyme and other pathogenic encephalopathies can be very complex and hit hard and fast depending on patient genetic strengths and environmental exposures. We are fortunate to to have Dr. Ackerley’s earlier, easy-to-access article as a complement to Calahan’s. Dr. Mary’s article was given to Nova U’s Dr. Klimas/NEID Clinic’s Dr. Irma Rey by a patient about the same time it was published, and she has run with it so enthusiastically that patients are now able to get treatment for mold/mycotoxin illness and perhaps related conditions. Brain, gut, microglial issues, the vagus pathway, methylation genetics: The links among these and environmental factors are becoming increasingly recognized as interdependent and will likely lead to much less suffering as patients assume more agency and educate their practitioners. Reply Cort Johnson says: July 24, 2015 at 8:50 pm I was quite encouraged that the hospital was willing to provide VERY expensive IVIG treatment based Najar’s recommendation which was based on a mildly abnormal spinal tap reading and no evidence of autoimmune disease. If he recommends it, apparently they’ll do it. That was really good to see! Reply Christine (Scotland) says: July 25, 2015 at 9:08 am I may have missed something obvious but if Dr Ackerley’s article is easily accessed, I can’t find it. Is there any chance of an easy to click link for the particularly cognitively challenged? Becca, Cort, anybody? Thanks – will reply separately with my strabge psychosis episodes aged 55 and 57. Thank you. Christine (languishing in a county without even an infectious diseases Consultant, where the resident Neurologist is so unpleasant, nobody ever asks to see him twice and the Rheumatologist refuses to see patients with CFS/ME/Fibro) Reply Becca says: July 27, 2015 at 7:23 pm Search the following sites: All link to her article. http://www.paradigmchange.me/wp/fire http://www.forums.phoenixrising.me/index.php?threads/brain-on-fire http://www.survivingmold.com/community I found many links to the article here in the US. It is easily accessed if enough search words are used on Google. Cognitive stuff though could make this more difficult. Search the sites when you get to them. Never give up. Do everything you can yoga-wise and otherwise to keep all inflammation down. Prolonged mold exposure can cause psychotic episodes or worse. Never eat inflammatory foods and see the best integrative practitioner you can, even if you have to consult by phone/Skype to do it. Australia and the US have practitioners that can at least consult on the inexpensive 23andme genetics test to get you started. If the orthodox systems have failed, abused or neglected you, go over their heads and have someone who knows these ropes guide you along the way. If a daily search is necessary, so be it. That is how others have fought their way through this former quagmire. You will find people to help and sort the helpful from the unhelpful if a positive fire is in your belly. Make it happen for a start, and I think you already have. Reply gloria says: July 24, 2015 at 11:28 pm it should be standard procedure to have an mri brain scan done and a lumbar fluid test done if a person has had fibro-pain and chronic fatigue for over several years- please write that paper Chris Cantor and thank you Cort for very informative articles Reply Danielle Bather says: July 25, 2015 at 6:47 am Only in the U.S.! If like me you have had years of chronic pain and fatigue and a rheumatologist diagnoses Fibromyalgia then that’s it, “live with it”is all you get in the UK. The NHS is a wonderful thing if you are critically ill, but if you are slowly dying like me forget it, sad but true. Reply Cort Johnson says: July 25, 2015 at 7:31 am I’m hoping that the new scanning techniques that can pick up neuroinflammation will find neuuroinflammation in FM and ME/CFS and they will become part of the standard testing protocols. Reply JulieG says: July 25, 2015 at 2:13 am Amazing. She expressed the same thoughts I had, as her TED Talk was ending, about all who had suffered in history because of misdiagnosis and no known treatment/cure. I had flashbacks of “Awakenings.” Wasn’t that the same disease, with patients who survived but left in permanent catatonic states? I haven’t read through the comments yet. Someone has probably already mentioned that. Reply Marline says: July 25, 2015 at 10:04 am I think that was Parkinson’s Disease in Awakenings. Reply David Fantle MD says: July 25, 2015 at 10:21 am No, it was a Parkinson-like condition caused by a pandemic of a viral encephalitis that happened around the turn of the century called ‘encephalitis lethargica’ that damaged the main waking center of the brainstem. It has never returned. Reply David Katcoff says: July 25, 2015 at 5:29 am If these protocols work for neuroinflammation of one kind, then they might work on another. I’d like to see the same successful steps tried on people with more garden variety illnesses like ME/CFS and Fibro. But maybe it takes more dramatic symptoms to summon up the more dramatic rescue techniques. Reply Becca says: July 27, 2015 at 7:47 pm Exactly. The least harmful protocols can sometimes be applied across the board. Just check the outstanding success of LDN 4.5, a cheap orphan drug that works wonders or partial wonders for many. All people are DNA-individualized, unique, and while many things work for a broad spectrum of people, not every approach fits everyone. People are running out of time, out of decades, to deal with this backwards-thinking, antiquated Western medical paradigm. Approaches that are more inclusive of the best of Western and Eastern work best in my experience. The best of Chinese and Ayurvedic medicine include the whole person as a unique being without the destructive and cost-prohibitive cookie-cutter approach of the dark side of Western medicine. The ancient/timeless traditions (not talking New Age here) do not punish the chronically misdiagnosed patient with possibly lifelong incarceration. Access to what produces results has often been denied, but it is not impossible. –Not even for M.E. folks. When in college I worked in a psych ward called the “hopeless” ward; many people had been discarded by their families for minor quirks. These broken hearts became truly insane from the horrible conditions there. All conditions were thrown together and all people were drugged together past sanity. (This happens everywhere.) Only steady human contact/compassion brought anyone out of it, and that was the purpose of our class — to give beyond labeling and, frankly, the medical brainwashing and neglect that stems from that. The first law of all healing (Hippocrates): First, do no harm. Has the old Western medical paradigm followed its prime directive? Reply Christine (Scotland) says: July 25, 2015 at 9:26 am This is so exciting Cort! I must get hold of Dr Ackerley’s paper and maybe the book. I apologise in advance for relating this blog to myself – as I usually do -but I’m totally on my own with CFS/ME. I’ve had CFS/ME since my early 30s but had so far isolated episodes of psychosis aged 55 and 57. To be fair to the psychiatrist, I was seen by, he arranged EEG and MRI of the brain. They were both ‘normal’ but as he isn’t a neurologist and told me he was looking for a brain tumor. He probably wouldn’t have recognised much. The first episode came during a long-standing neglected (not by me) UTI and I’ve considered that infection might have been a precipitating factor. Thank you for this post and everybody for the comments. I LOVE this blog! Reply Cort Johnson says: July 25, 2015 at 1:15 pm Thanks Christine, one of the things that impressed me about Susannah’s case are the many different symptoms neuroinflammation can cause. It’s extraordinary what can happen when the immune system targets a part of the brain! Reply Carollynn says: July 25, 2015 at 1:04 pm Is someone trying to recruit doctors Najjar and Dalmau into studying ME/CFS? We need more people like that–interested in and willing to look into something on the relative periphery of medicine–trying to help us. Who could that “someone” be to recruit them? Reply Cort Johnson says: July 25, 2015 at 1:19 pm It would be nice. I have a feeling though that both are fully immersed in this new field they’re helping to create. You never know though. ME/CFS and FM are MYSTERIOUS central nervous system disorders at least in part. I imagine that if the neuroinflammation studies work out – there will much more emphasis on looking for autoimmune basis for the inflammation. I can’t imagine that wouldn’t make sense to do that given the many similarities between autoimmune disorders and ME/CFS and FM. Reply John says: July 25, 2015 at 11:30 pm Hi Cort, Thanks for the immense service you are doing to the CFS/ME community keeping us apprised of the latest happenings from around the world. I was wondering if you have plans to interview Dr. Charles Shepherd and Dr. Abhijit Chaudhuri one of these days. With Neuroinflammation being the hot word in CFS/ME these days, I will definitely be interested in hearing more from them. Thanks. Reply TAE PARK,M.D says: July 27, 2015 at 10:34 am Air Pollution: Mechanisms of Neuroinflammation & CNS Disease Michelle L. Block1 and Lilian Calderón-Garcidueñas2,3 1 Department of Anatomy and Neurobiology, Virginia Commonwealth University Medical Campus, Richmond, VA 23298, USA 2 Department of Biomedical and Pharmaceutical Sciences, College of Health Professions and Biomedical Sciences, The University of Montana, Missoula, Montana, USA 3 Instituto Nacional de Pediatria, Mexico City, Mexico Abstract Emerging evidence implicates air pollution as a chronic source of neuroinflammation, reactive oxygen species (ROS), and neuropathology instigating central nervous system (CNS) disease. Stroke incidence, and Alzheimer’s and Parkinson’s disease pathology are linked to air pollution. Recent reports reveal that air pollution components reach the brain. Further, systemic effects known to impact lung and cardiovascular disease also impinge upon CNS health. While mechanisms driving air pollution-induced CNS pathology are poorly understood, new evidence suggests that activation of microglia and changes in the blood brain barrier may be key to this process. Here, we summarize recent findings detailing the mechanisms through which air pollution reaches the brain and activates the resident innate immune response to become a chronic source of pro-inflammatory factors and ROS culpable in CNS disease. Inflammation is increasingly recognized as a causal factor in the pathology and chronic nature of central nervous system (CNS) diseases 1. While diverse environmental factors have been implicated in neuroinflammation leading to CNS pathology, air pollution may rank as the most prevalent source of environmentally induced inflammation and oxidative stress 2. Traditionally associated with increased risk for pulmonary 3 and cardiovascular disease 4, air pollution is now also associated with diverse CNS diseases, including Alzheimer’s disease, Parkinson’s Disease, and stroke. Air pollution is a multifaceted environmental toxin capable of assaulting the CNS through diverse pathways. Until recently, the mechanisms responsible for air pollution-induced pathology in the brain were unknown. However, despite the variable chemical and physical characteristics of air pollution and the consequent activation of multiple pathways, inflammation and oxidative stress are identified as common and basic mechanisms through which air pollution causes damage 4, including CNS effects. Furthermore, while multiple cell types in the brain respond to exposure to air pollution, new reports indicate that microglia and brain capillaries may be critical actors responsible for cellular damage. In the following review, we describe the complex composition of air pollution, explain current views on the multifaceted mechanisms through which air pollution impacts the CNS, and discuss the new mechanistic findings implicating innate immunity and chronic neuroinflammation in CNS damage induced by air pollution. *Corresponding Author: Block, M.L. (MBlock@vcu.edu). NIH Public Access Author Manuscript Trends Neurosci. Author manuscript; available in PMC 2010 September 1. Published in final edited form as: Reply Lynda says: July 27, 2015 at 11:24 am Hi Cort, I read this book when it first came out. What struck me immediately was how different her support system was from most of us and how it really made it possible for her to be diagnosed, treated and obtain so much recovery. My general practitioner thought I was hyper anxious and put me on psychiatric drugs. My rheumatologist thought I had inflammation and FM, but treated me with standard drugs. My GYN removed an ovarian tumor. My neurologist told me I had progressive relapse/remitting MS. Scriptts told me I had hyper mobility and anemia. It wasn’t until Dr. Peterson did an LP that viral encephalitis, inflammation and white matter lesions were found. I was finally diagnosed with myalgic encephalitis, probably of several years duration and as a result I also have temporal lobe damage and several autoimmune diseases. This isn’t just my story, I’m sure it’s one many of us can tell. Meeting that one extremely essential doctor who does think out of the box is a luck of the draw for some of us. I believe that until ME/CFS is a required part of every med school’s criteria, all inflammatory illnesses will remain a mystery for most patients. I also consider myself very lucky. Reply Cort Johnson says: July 27, 2015 at 12:26 pm So interesting Lynda – thanks for sharing your story and as you say many peoples story – who find that right doctor. Reply TAE PARK,M.D says: July 27, 2015 at 4:09 pm READ THIS ARTICLE TELLING US MITOCHONDRIAL DAMAGE WHICH ESSENTIAL PART OF CFS/ME Ultrafine Particulate Pollutants Induce Oxidative Stress and Mitochondrial Damage Ning Li,1,2 Constantinos Sioutas,2,3 Arthur Cho,2,4 Debra Schmitz,2,4 Chandan Misra,2,3 Joan Sempf,5 Meiying Wang,1,2 Terry Oberley,5,6 John Froines,2,7 and Andre Nel1,2 1Department of Medicine, University of California, Los Angeles, California, USA; 2The Southern California Particle Center and Supersite, Los Angeles, California, USA; 3Department of Civil and Environmental Engineering, University of Southern California, Los Angeles, California, USA; 4Department of Molecular and Medical Pharmacology, University of California, Los Angeles, California, USA; 5Pathology Service, Veterans Administration Medical Center, Madison, Wisconsin, USA; 6Department of Pathology and Laboratory Medicine, University of Wisconsin, Madison, Wisconsin, USA; 7Center for Occupational and Environmental Health, University of California, Los Angeles, California, USA Address correspondence to A. Nel, Department of Medicine, UCLA School of Medicine, 52–175 CHS, 10833 Le Conte Avenue, Los Angeles, CA 90095 USA. Telephone: (310) 825-6620. E-mail: anel@mednet.ucla.edu This study was supported by the National Institute of Environmental Health Sciences (grant RO1- ES10553) and the Southern California Particle Center and Supersite, funded by the U.S. Environmental Protection Agency (STAR award R82735201) and the California Air Resources Board (grant 98–316). This manuscript has not been subjected to the U.S. EPA peer and policy review. Received 18 September 2002; accepted 16 December 2002. The objectives of this study were to determine whether differences in the size and composition of coarse (2.5–10 μm), fine (< 2.5 μm), and ultrafine (< 0.1 μm) particulate matter (PM) are related to their uptake in macrophages and epithelial cells and their ability to induce oxidative stress. The premise for this study is the increasing awareness that various PM components induce pulmonary inflammation through the generation of oxidative stress. Coarse, fine, and ultrafine particles (UFPs) were collected by ambient particle concentrators in the Los Angeles basin in California and used to study their chemical composition in parallel with assays for generation of reactive oxygen species (ROS) and ability to induce oxidative stress in macrophages and epithelial cells. UFPs were most potent toward inducing cellular heme oxygenase-1 (HO-1) expression and depleting intracellular glutathione. HO-1 expression, a sensitive marker for oxidative stress, is directly correlated with the high organic carbon and polycyclic aromatic hydrocarbon (PAH) content of UFPs. The dithiothreitol (DTT) assay, a quantitative measure of in vitro ROS formation, was correlated with PAH content and HO-1 expression. UFPs also had the highest ROS activity in the DTT assay. Because the small size of UFPs allows better tissue penetration, we used electron microscopy to study subcellular localization. UFPs and, to a lesser extent, fine particles, localize in mitochondria, where they induce major structural damage. This may contribute to oxidative stress. Our studies demonstrate that the increased biological potency of UFPs is related to the content of redox cycling organic chemicals and their ability to damage mitochondria. Key words: concentrated ambient particles, dithiothreitol assay, heme oxygenase-1, mitochondrial damage, oxidative stress, polycyclic aromatic hydrocarbon, ultrafine particles. Environ Health Perspect 111:455–460 (2003). Reply Alyson says: July 27, 2015 at 10:42 pm For those of you with a diagnosis of fibromyalgia, ms, lupus, rheumatoid arthritis, and many other diseases, you likely have LYME DISEASE! MOST lyme positive patients go for long periods of time being misdiagnosed, and going without proper treatment! This has happened to EVERY Lyme positive person I know. I have been sick with Lyme Disease for 2 years. I was given other diagnoses such as migraine headaches and anxiety/pa ic attacks. They prescribed me meds for those supposed ailments.. which played no role in killing the “bacteria” that I was actually infected with. Lyme is an “infectious” disease. It is currently an epidemic, particularly in the East coast. Lyme is next to impossible to diagnose, as the traditional Lyme tests (Elisa) done by your pcp or hospital are extremely inaccurate!! My 3 tests came back with false negatives! Given the symptoms I was having, and knowing I was bitten by a deer tick, I KNEW I had Lyme Disease and wasn’t taking no for an answer. I was persistent.. and I seeked out a Lyme literate doctor (who are hard to find). He immediately started me on antibiotics, just according to my list of symptoms I brought to him. He said that he would do the traditional Lyme Disease test (Elisa)..but that it would likely come back negative because it is horribly inaccurate. He strongly urged me to have a special test done. It was called the “Western Blot”. This test was sent to the one lab that processes this test… “Immunosciences”. The Western Blot test ended up showing the levels of bacteria for not only Lyme Disease… but 4 other bacterial co-infections that I was simultaneously infected with. I happened to be bit by (and likely infected by) 2 ticks. Many people with Lyme Disease have no recollection or proof of a tick biting them. They never get the classic “bulls eye” rash.. so they are unaware of their lyme disease until it begins to show symptoms. then the fun really begins! I was one of the people who never got a bullseye rash. But..luckily, I was fully aware of my tick bites. Ok.. so this Western Blot test is not covered on your health insurance. It cost me $600 out of pocket.. and it was worth every damn penny…as I would likely be dead today if I did not get the test done. I have been on treatment for a year..but because it was caught late, and because I have multiple co-infections, I am still very sick. I am out of my “bed ridden” condition, and I am able to work a desk job. But my quality of life is horrible. The longer you are treated for your so-called fibromyalgia or other false diagnosis, and NOT treated with antibiotics for your Lyme Disease, the worse and worse you will get, and your neurological symptoms will reach catastrophic levels…and you will perhaps die. This is not to be taken lightly. People are dying from complications due to Lyme Disease. .such as a heart attack or stroke or pneumonia. Their cause of death then gets documented as one of those things.. but NOT as Lyme Disease. The statistics for deaths due to Lyme Disease are also horribly inaccurate because of this. And… the CDC does not want to recognize Lyme Disease as a chronic illness. Doctors are losing their medical licenses because they are breaki g the rules with treating their Lyme patients for longer than “allowed” with antibiotics. Most of these Lyme literate doctors are breaki g the rules to help their patients…because they also had/have Lyme Disease! It makes you an extremely compassionate person. We all know the suffering all too well. Anyway… here are a couple links… to read about lyme vs. Fibromyalgia diagnosis, and some info about the major red tape and politics behind Lyme Disease. https://www.psychologytoday.com/blog/why-can-t-i-get-better/201312/are-your-fibromyalgia-symptoms-due-lyme-disease http://www.healthline.com/health-news/you-do-not-have-chronic-lyme-disease-091514 Wishing you all good health, healing… and answers! ♡ Reply TAE PARK,M.D. says: July 28, 2015 at 8:18 pm http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2743793/figure/F3/ if you look at this picture, all of the questions surrounding cfs/me is with air quality–pm 2.5, UFP. Reply Chimura says: August 4, 2015 at 7:05 am Off topic sort off Dead link in your post: Study Suggests Mold Exposure Can Cause Severe Effects in Chronic Fatigue Syndrome (ME/CFS) http://www.cortjohnson.org/blog/2013/04/13/study-suggests-mold-exposure-can-cause-severe-effect-chronic-fatigue-syndrome-finally-meet-mold-study-finds-high-rates-of-m/ Resources Check out Eric Johnson’s story here (not) Well at least something’s still to be found here: http://paradigmchange.me/erik/ Same surname, are you related? Nothing about Particulate Matter (PM) in general either, just saying. Like Tae mentions, I thought the same. Reply Leave a Reply Name (required) Mail (will not be published) (required) Website Notify me of follow-up comments by email. Our ME/CFS, FM and Chronic Pain Forums Are Open! Join Them Here! Get Our Free ME/CFS and FM Blog Name Email* Support Our Work! 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Read more: Her Brain Was On Fire: A Neuroinflammation Story http://www.cortjohnson.org/blog/2015/07/24/her-brain-was-on-fire-a-neuroinflammation-story/

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