Ruben Lee Sims is a vet who has struggled with Lyme/MSIDS for over 3 decades, with most of that time being misdiagnosed. He was punished under the Uniform Code of Military Justice with two Article 15s and nearly court martialed twice, because doctors said no disease caused all of those symptoms. Secured in psychiatric wards three times as a hopeless hypochondriac, he was told he would stay on the psychiatric ward until he got better.
After congressional investigation, he was finally discharged from the Air Force after 14 years of highly recognized and awarded military service that ended in shame because doctors did not understand Lyme disease. Attorneys laughed and joked as they decided he was no longer fit for duty and discharged him from the Air Force without benefits, pay, or health insurance. He was essentially dumped on the streets homeless, disabled, and unable to work, with a wife and a child to provide for.
Three decades later, the VA still cannot diagnose Lyme disease based upon symptoms. Sims learned about Lyme Disease from a May 2015 Costco magazine article. He learned that the rash he had that started three decades ago was the Acrodermatitis Chronica Atrophicans (ACA) rash that is caused by untreated Lyme disease.
It took six months of constant confrontation with the VA to get them to bring in someone that understood Lyme disease. Sims is seronegative by ELISA and Western Blot. So, doctors’ over reliance on serology test nearly left him blind from severe sensitivity to light. The ACA rash confirmed his Lyme disease 34 years after my infection.
The VA did not recognize Lyme disease until the mid-1990s. That means that veterans who had Lyme disease before then were misdiagnosed and some are perhaps homeless and disabled. According to Sims the government is no wiser today than before they recognized Lyme disease. Veterans are still being misdiagnosed and perhaps dying of other Lyme-related diseases.
https://www.lymedisease.org/vet-suicide-lyme/ In this link, Sims wrote a letter to David Riley, National Commander of the DAV. He states that the problem is NOT about getting “timely and effective mental health services,” as these attempts have failed miserably. The rate of veteran suicides has remained nearly constant for over a decade in spite of VA mental health efforts.
The real problem is: military and VA healthcare systems follow CDC two-tier tests Lyme disease guidelines that capture less than 10% of Lyme disease cases nationwide. Over 90% of Lyme disease cases are diagnosed and treated by a minority of doctors who specialize in Lyme disease and tick-borne disease and understand CDC guidelines are fatally flawed.
Sims states that troops are exposed to tick bites worldwide in training and in the fields.Military risk assessments often find high risk of Lyme disease at installations all around this country. Yet, the ability to diagnose and treat Lyme disease is nearly nonexistent in the military and VA healthcare systems.
Veterans with Lyme disease find themselves caught up in a devastating perpetual loop of misdiagnoses, failed treatments, and constant rejection that can only be resolved by proper diagnosis and treatment of Lyme disease. Lyme disease affects both the mind and body. However, mental health alone cannot cure Lyme disease.
Sims says nothing will change about suicides in veterans until the CDC Lyme disease guidelines are addressed immediately.
Uploaded on Dec 24, 2016 Lecture to American Psychiatric Association NY Branch, Lenox Hill Hospital
This excellent video has Dr. Jane Marke discussing psychiatric illness in TBI patients, and while the technical lecture is given to psychiatrists it will be highly illuminating to patients. If you only want to know about psychiatric symptoms associated with Lyme, skip to around minute 28.
Marke states,
“Many doctors are convinced that after a short course of antibiotics patients should be well. The huge number of people still ill years after a course of antibiotics belie this assertion.”
“Patients with Lyme, and related tick-borne disease, can have symptoms which mimic every known psychiatric syndrome. Treatment aimed directly at symptoms can relieve suffering rather quickly. These symptoms include insomnia, anxiety, “brain fog”, obsessive-compulsive symptoms, depersonalization, depression, and rages. But antibiotics are needed to undermine the root cause of the illness: the bacteria that causes Lyme: Borrelia burgdorferi.”
Other noteworthy comments:
15:12 – Marke describes the flagella of borrelia is more like the winged arms on a wine bottle opener which powerfully propels the organism.
15:40 – She questions if psychiatric disorders are inflammatory diseases. She lists: Autism, Alzheimer’s, Schizophrenia, Bipolar, PTSD, Depression, Stress, Sleep Deprivation, Self-harm, and Suicid Attempts. She also describes a study in England observing children for over a decade in which children with a high IL-8 at age 8 have an 81% change of developing depression by age 18 and a 2-fold chance of becoming psychotic.
18:04 – She states that TBI’s (Tick Borne Illness) causes an impaired Hypopituitary Axis (HPA) which on a chronic basisdecreases cortisol and increases inflammation.
20:40 – Neurotoxins in the brain contribute to mental illness by causing problems with Homosysteine metabolism, which supresses remethylation, but that apoptosis (cell death) which can be reversed by supplementing with SamE.
21:30 – She says Post Treatment Lyme Syndrome (PTLS) is like a “dog whistle,” and usually demonstrates a bias on behalf of the authors who believe that 3 weeks of antibiotics cures LD. She then goes on to tell of a study that revealed that nearly 50% of those labeled as PTLS (with persistent symptoms) had anti-brain antibodies compared to 16.5% of Post Treatment Healthy Controls (no symptoms).
25:34 – Babesia and Bartonella are of extreme interest to psychiatrists.
*Bartonella produces most of the psychiatric problems as well as photophobia, floaters, blurred vision, bone pain, pain in the soles of the feet, headaches, the hallmark rash that looks like stretch marks, migratory polyneuropathy (burning, weakness, and numbness, on both sides of the body that moves around) and POTS (a fast heart-rate when one goes from a lying position to a standing position). Patients tend to exhibit OCD, self-mutilating behaviors, seizures, rage attacks, and psychosis (bipolar under this).
26:35 Persisting atypical and cystic forms drive local inflammation
28:23 Shows an excellent slide of the percentage of patients with late Lyme and various impairments such as Encephalopathy, memory issues, cognitive impairment, motor issues, and more.
31:15 She sites a study in which researchers set out to prove that there is no such thing as Late Lyme causing psychiatric problems. Compared to controls, chronic lyme patients met criteria for adult onset ADHD(both inattentive type and hyperactive/impulsive types combined) more frequently. She encourages doctors to take “syndromes,” and try to find an etiology, rather than the reverse, which is what is typically done. In this specific case, she’s asking doctors to question and try to find solid reasons (etiology) why an adult would all of a sudden have ADHD.
33:30 She says TBI patients are the worst sleepers she’s encountered. This is important because it is when toxins are cleared in the brain.
35:30 Depression is common in TBI patients.
36:50 She has an informative slide on suicides from those with Lyme collected from newspapers.
38:55 Shows a slide on Case studies of Intrusive Symptoms such as musical hallucinations, intrusive thoughts, Cognitive Tics, catastrophising, OCD.
41:00 Depersonalization, Violence, self-harm, and schizophrenia can be a part of the picture with TBI’s. At 41:20 she tells the story of a little girl who would throw horrific temper tantrums in which she would destroy her room and then feel absolutely horrible after the fact. She also had a psychotic episode. Her MSIDS testing came back flagrantly positive.
42:21 Autism – There is vertical transmission of Lyme from mother to fetus. Those with Bb in a study made remarkable improvement taking antibiotics.
42:56 Finding Spirochetes in Alzheimer’s patients as well as other pathogens.
45:18 She points out the CDC guidelines and controversies, including the very poor testing and the vilification of small labs. She recommends CLIA certified labs and that there is NO SUCH THING AS AN FDA APPROVED LAB. She recommends IGeneX labs as they report the bands to you and uses more than 1 strain of Bb.
48:17 She shows a SPECT scan with marked improvement after treatment with antibiotics for Encephalopathy. She also states that minocycline probably crosses the blood brain barrier the best.
An article in “The Mighty,” is a straight forward commentary on what many Lyme/MSIDS patients go through in their quest for medical treatment by medical professionals who verbally abuse them.
There is a term in clinical psychology known as “gaslighting.” Its origins are the 1938 play and 1944 film “Gas Light.” Gaslighting is “a form of mental abuse in which information is twisted or spun, selectively omitted to favor the abuser, or false information is presented with the intent of making victims doubt their own memory, perception, and sanity.”
Gaslighting, akin to “sick shaming” in the case of chronic Lyme disease, is a brilliantly orchestrated method perpetrated by those in power who either purposely or inadvertently damage your trust in yourself and in your own reality by making you feel both “crazy” and “wrong.” When you have an illness like chronic Lyme, it’s easy to be the victim of this tactic. Chronic Lyme disease is a perfect yet tragic example of this ploy in action, executed by a global cast of characters against the most vulnerable among us.
This sounds so outrageous. And it is. But as we all know, truth is often stranger than fiction.
Every single day in every corner of the world, Lyme patients are being gaslit in doctors offices, hospitals, clinics and the like. In fact, the very professionals in whom we place our trust, those we hope will care about our health and well-being, are doing far more harm than good by minimizing, trivializing, denying, discrediting, doubting, diverting, blaming, shaming, and patronizing Lyme patients and their symptoms.
The years of falsehoods, misinformation, greed, profit, ego, and arrogance driving this behavior carried out by the medical powers-that-be — the very people who have prevented chronic Lyme disease from getting the medical attention it so deserves — have turned Lyme disease into a universal experience of gaslighting, sick shaming, blaming and the discrediting of millions of patients worldwide.
Not a day goes by when Lyme patients, in response to their cries for help, are told by their doctors that they can’t possibly have chronic Lyme disease because…
“I don’t believe in Lyme…You were nowhere near a tick-infested region, were you?…I would have tested you for it if I thought it was Lyme…Something would have shown up in your blood test…Your blood tests were indeterminate, so you can’t have Lyme…Your blood tests were negative so you don’t have Lyme…It’s a false positive, you don’t have Lyme…You got better after a round of antibiotics so it’s cured…This disease is very rare…There is no Lyme in this country, city, town, region…If you didn’t see the tick, then you can’t have Lyme…Did you have a rash?…If you didn’t see the bull’s-eye rash, then you don’t have Lyme…It’s post-treatment Lyme disease, don’t worry, it will resolve itself…It’s post-treatment Lyme disease syndrome and there’s nothing more we can do…Go home and find some distractions…Everyone with Lyme has made it up…It’s a figment of your imagination…There is no such thing…The internet is wrong…Stop Googling…When did you get your medical degree?…With all due respect, Google is not medical school…Remember, I’m the one with the credentials…I can assure you that ticks don’t cross the border…You didn’t go hunting in the highlands of Scotland, did you?…You don’t have an elevated white blood cell count so you can’t have Lyme…You don’t have arthritis so you can’t have Lyme…Your joints are fine, aren’t they?…No one gets headaches with Lyme disease…Lyme doesn’t cause your symptoms…I don’t know anything about Lyme disease but I can tell you, you don’t have it…No one can have that many symptoms…No one can be that sick…You look too good…You’re a beautiful girl and you don’t need this illness to get attention…It’s just menopause…These are just normal signs of aging…Everyone feels tired…You’re just lazy…Get some fresh air and exercise…You just need to get out and get busy…You’re depressed…You’re stressed…You’re just feeling anxious…It’s likely an inherent weakness…You just need to think positively…It’s all in your head…Stop dwelling on your problems…Try praying…If you just stop thinking about it, you’ll feel better…Are you familiar with Freud?…Here, I’ll refer you to a psychiatrist…An antidepressant and some therapy should do the trick.”
These inane pronouncements are made by doctors daily causing Lyme patients to feel like they’re “crazy,” lazy, not smart enough, overdramatizing, misinterpreting, histrionic, hypochondriacal, malingering, and just plain wrong. And to make matters worse, they are rarely given any alternative diagnoses and treatment solutions that are of any use. The best many doctors can do, it seems, is to tell their patients it’s all in their heads and then offload them to a psychiatrist for meds and therapy.
I can assure you that chronic Lyme disease is very real, the pain Lyme patients are forced to endure is very real, and the number of people affected by the disease — both directly and indirectly — is growing exponentially while the medical establishment continues to do very little to address it.
You may ask, “Why is this happening? Why would doctors go to such lengths to dismiss and shame their patients?”
The best I can say is the answers are complex. Just know that it’s a 40-year-old, multi-faceted construction of falsehoods, obfuscations, opportunism, trickle down effects, herd mentality, and the like, orchestrated by those who have much to gain by gaslighting and a great deal to lose if they don’t.
Lyme Madness™chronicles the journey of Lori’s son’s chronic illness and their headlong plunge down a confusing, overwhelming, and mind-bending rabbit hole to help him recover his health. It reflects their eighteen month experience of desperately trying to procure a proper clinical diagnosis; it chronicles the subsequent months they spent searching for treatments that would hopefully make a difference; and it details the daily researching and seeking of a myriad of alternative approaches for his ultimate healing – all to release him from the unsympathetic grip of this complex neurological condition.
This article, copied in full from the Huffington Post, is an example of how MSIDS (multi systemic infectious disease syndrome, or Lyme with friends) can cause horrific psychiatric manifestations. If you are experiencing these symptoms, print out and take the ILADS brochure to your doctor. The link is found about half way through the article. Also, please note that treatment ameliorated his anxiety.
I sat in my Honda Civic watching people arrive one by one at Lynnet’s house, feeling like a stalker. So many other people were showing up, but so far not a single person I knew. You’re 27, I told myself. This is no big deal. And then I braced the bottle of wine I had bought for the party as I shifted the car into drive and pulled away from the curb. Somehow a panicked sparrow had taken up the space in my chest where my heart should be, beating its wings madly against the breastbone, and my whole body was burning and stinging. I thought I was going to pass out.
My first panic attack hit hard during graduate school. Although I had never been a socialite and never enjoyed forcing small talk with stranger, I had never before been afraid of people. I never had a disorder that scared me away from others and which limited my capabilities. I only recognized what I was feeling because I had for years read information from the National Institute of Mental Health (NIMH) and National Alliance on Mental Illness (NAMI) as part of my job. Huh, I thought. I have social anxiety. Who knew?
I had flourished as an undergraduate, but the undergrad lifestyle didn’t require schmoozing at professors’ homes with respected and award-winning authors, agents, et al. I wasn’t cut out for it. I made it through, but certainly not on the strength of my ability to wine-and-hors-d’oeuvre Very Important People.
I accepted the limitations this placed on my life as panic attacks became more frequent in social situations, even as they encroached on my professional life, which involved a lot of receptions, group dinners and related functions. But by my early 30s, anxiety events were getting out of hand: as a personal challenge, I went to a networking function co-hosted by CNN and the National Lesbian and Gay Journalists Association, and after only mustering the will to speak to one person (who turned out to be the event caterer), I felt suddenly as if I had been placed under a broiler, burning hot, disoriented, faint. I ran, literally, outside and walked home with tears flowing uncontrollably down my face from the pressures of inexplicable panic and a general feeling of failure.
Within months, I began to experience recurring visions of my body toppling over the edge of my 10-story apartment building. Over and over, like a film reel on a loop. I had never had any sort of mental vision before. This was totally new and disturbing, like a nightmare intruding on waking life. Eventually, I was so afraid of people that I ran out of food because I couldn’t handle grocery shopping, and I began to order Peapod delivery service. I had developed an intimate relationship with depression since my adolescence, but this was something else entirely — something far more active, aggressive and almost demonic feeling. At 32, I found a psychiatrist to cope with these increasingly disturbing and totally new problems, which coincided with an array of physical health problems that doctors at the time thought might be caused by multiple sclerosis.
My psychiatrist immediately loaded me up with Zoloft, Wellbutrin, Clonopin and a low dose of Seroquel — typically prescribed for bipolar disorder and schizophrenia, but sometimes prescribed “off label” in very low doses for use as a sleep aid and to treat obsessive-compulsive disorder. She said the visions and paranoia were a kind of psychosis that could fall into OCD or other severe anxiety categories, or perhaps could be a manifestation of bipolar mania. Although I had read a great deal about mental illness as a primary part of my job, and interacted with mental health advocates and researchers, I wasn’t immune to the stigma; I didn’t want to be prescribed an “atypical antipsychotic.” Yet I was desperate enough to reluctantly agree to take it. This was a life-or-death situation, as the constant playback of seeing myself fall from great heights was disturbing from the beginning, but was now beginning to feel like an inevitable prediction of what was to come.
Years into treatment, the scary visions had ceased but the high anxiety still rode alongside me, if not usually in the driver’s seat.
I was diagnosed with Lyme disease last February, at age 36.Several months into antibiotic treatment, the constant feeling of agitated panic I had come to accept as a part of my intrinsic personality had diminished so much that I had no feeling of dread whatsoever about an upcoming three-day meeting that involved networking with 30 people, some total strangers. This unusual lack of panic was almost as jarring as the first panic attack I experienced; it was that novel.
If I, or if any one of the dozen-plus doctors I’ve seen over the past five years, had seen this brochure from the International Lyme and Associated Disorders Society (ILADS), http://www.ilads.org/lyme/lyme-brochure-psych-2014.pdf life could have been so much easier so many years ago. It is written for mental health practitioners, but the brochure details emotional and psychiatric — as well as, crucially, cognitive — symptoms of Lyme, as well as non-psychiatric symptoms that in combination can lead to a differential clinical diagnosis of Lyme. And such a diagnosis and resulting treatment for Lyme disease can be just as important to improving neuro-psychiatric symptoms of Lyme as can cognitive-behavioral therapy and psych medications.
In the next post, I’ll discuss the case of my clinical doppelganger — the subject of a recent medical case study whose age and psychiatric and physical symptoms almost exactly mirror mine, but whose outcome has not fared as well as mine. I’ll also talk about how a little awareness can prevent these journeys into madness, which unfortunately are common symptoms of Lyme disease, and whose symptoms are treated with a Band-Aid approach using antidepressants, antianxiolytic, and antipsychotic prescription medications instead of treating the infectious disease at the root.
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If you — or someone you know — need help, please call 1-800-273-8255 for the National Suicide Prevention Lifeline. If you are outside of the U.S., please visit the International Association for Suicide Prevention for a database of international resources.
For more information on psychiatric issues with MSIDS:
Published on Nov 21, 2016 FOX5NY The full interview with Dr. Elena Frid for Lyme & Reason 2.0.
Excellent interview with Dr. Frid on Neurological Lyme. http://www.elenafridmd.com She is honest and humble enough to give patients credit for teaching her a lot about Lyme Disease. She also states it’s imperative to deal with autoimmune issues throughout treatment.
Dr. Frid sees clients with complex Neuro-Lyme manifestations which often hide behind other illnesses including: Multiple Sclerosis, ADHD, Autism, Arthritis, Alzheimer’s, Parkinson’s disease, Irritable Bowel Syndrome, Fibromyalgia, Chronic Fatigue Syndrome and many others.
She frequently collaborates on complex pediatric cases with Dr. Charles Ray Jones, a world leading pediatric Lyme disease specialist with over 40 year career experience in dealing with children with Lyme disease and other Tick Borne Illnesses.
In addition to her practice, Dr. Frid lends her expertise to various organizations and news programs by speaking about Lyme disease and its effect on the nervous system. She has been featured on NY1 news, 710 talk radio, interviewed for a Fox News Special on Lyme disease as well as various podcasts. She offers her medical knowledge to patients on her YouTube channel with weekly posts of interesting and complex cases that she comes across in her practice.
To stay connected and up-to-date with Dr. Frid’s monthly newsletter and weekly YouTube posts as well as other announcements please follow the News Link to subscribe. http://www.elenafridmd.com/copy-of-news
Approx. 1 hour FOX5NY
Published on Nov 18, 2016
A replay of a Facebook Live chat.
FOX5NY started doing pieces on Lyme Disease due to Lew Leone, vice president and general manager of WNYW-FOX 5 and WWOR-My9, FOX Television Stations’ New York duopoly. While saddened to hear his wife has LD, we are the grateful recipients of his desire and ability to give this pandemic and epidemic the air time it deserves.
Madison Area Lyme Support Group 