Lyme may be madness, but it’s not “all in your head”
By Lori Dennis, MA
Every day, in doctors’ offices across the United States, Canada, the UK, Ireland, Amsterdam, Australia, Sweden—in 80 countries around the world—chronic Lyme disease sufferers are told that their debilitating, destructive, multi-systemic illness is nothing more than a small nuisance condition that is really just “all in their head.”
For more than 40 years, mainstream medicine has kept chronic Lyme disease in the shadows. The disease itself, along with the political machinations that surround the illness, plunge sufferers down a complicated, confusing, and terrifying abyss—a black hole of personal anguish, conflicting medical views, widespread corruption, and unrelenting health care navigation.
Today, chronic Lyme disease has reached pandemic proportions, with a grossly underreported 300,000 cases per year in the U.S. alone, and millions suffering worldwide. This is a critical time for mental health professionals to step up for the sake of millions who are chronically ill, infirm and medically abandoned.
As mainstream medicine continues to turn its back, invalidating, denying, ignoring and even mocking the sufferers of this very real chronic illness, the mental health profession has a moral and ethical obligation to create a system of care for those who are sick and dying, who are without medical support and are left to struggle entirely on their own.
What we desperately need is a wake-up call to psychiatrists and all mental health care providers, asking them to become educated about this infectious disease and be aware that it must be used as a differential diagnosis.
How have I come to know this Lyme world so intimately?
For more than four years now I have been immersed in the land of chronic Lyme, driven by my adult son’s illness. I am a Registered Psychotherapist in private practice in Toronto, Canada, where I support chronic Lyme sufferers every day firsthand. And I am the author of the newly released book Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease.
We entered ‘Lymeland’ in October of 2012, when we were forced to go on a long, terrifying and overwhelming medical odyssey. It started with a grueling 18-month journey into the offices of 20 medical specialists in New York City, each of whom missed my son’s diagnosis altogether. This hero’s journey required us to navigate my son’s declining health issues entirely on our own. We were forced to do our own research and use our intuition, determine the diagnosis for ourselves, and then traverse the slippery slope of this foreign land—an upside down, inside out, mad world where most doctors are not there to support you save for a handful of ‘believers.’
On this expedition, just like all Lyme sufferers and caregivers, we were forced to become our own microbiologist, neurologist, immunologist, gastroenterologist, infectious disease specialist and so on, in order to map out a treatment plan, all without a GPS.
Our story is by no means unique. Most chronic Lyme sufferers are ill for months, years or even decades before they come to understand the root cause of their dis-ease. Most sufferers consult with a multitude of doctors only to have to figure it out for themselves.
So this has now become part of my mission: to educate my colleagues about the devastating neuropsychiatric, bio/psycho/social, and physical effects of this illness.
When patients present with intractable depression, intractable anxiety, and a myriad of other symptoms, mental health professionals must consider that infectious disease can potentially be a root cause.
It’s not enough to only consider childhood trauma when assessing mental health. And it’s not acceptable or appropriate to make a bee line to the prescription pad as the first line of defense.
First, the potential underlying mechanisms of neurological inflammation, immunosuppression, and infectious disease need to be more widely considered.
Yes, it’s true. Chronic Lyme disease is, in fact, in your head. But not in the way that doctors intend that to mean. Contrary to medical consensus, chronic Lyme disease is not a made-up illness. It is NOT a case of malingering, Munchausen, hypochondria, laziness, or “craziness.”
Chronic Lyme disease is a bacteria-driven, multisystem, immunosuppressive, post sepsis illness, replete with relapsing fever, retroviruses and opportunistic infection.
Chronic Lyme disease is all in your head because it is primarily a neurological disease, wreaking havoc on your brain and your nervous system—as well as your heart, your liver, your kidneys, and other organs. Lyme disease patients can, and most often do, experience anxiety, depression, panic attacks, rage, attention problems, short-term memory loss, personality changes, mood swings, learning disabilities, detachment, dissociation, depersonalization, psychotic episodes, and obsessive-compulsive disorder.
Sufferers are desperate for mental health professionals (along with all other medical specialists) to understand Lyme so that they will know to consider it as a potential differential diagnosis before plying a patient with psychotropic meds which may make matters worse.
We need mental health professionals to help chronic Lyme sufferers deal with the the heavy losses they must face every day. Loss of health, loss of the person they once were, loss of independence, loss of dreams and goals, loss of missed opportunities, loss of the life they once had, loss of identity, loss of self-esteem, loss of loved ones who abandon them, loss of hope, loss of finances, loss of employment, and loss of a future.
We need mental health professionals to help chronic Lyme sufferers with the discrimination and marginalization they face. Lyme sufferers are, in fact, victimized many times over—by the disease itself, by doctors who turn their backs, by family and friends who roll their eyes and walk away, by insurers who refuse coverage, and by a medical system that negates the very existence of this disease.
I would give anything to un-learn, un-know and un-see the ugly and devious underbelly of mainstream medicine and all of its political machinations. And I would of course give anything to see my son fully recover from this life-altering illness. We continue to work at it every single day.
Several years later, we are still searching and filing away new ideas as my son’s various symptoms wax and wane. Without question, this process is expensive and draining, as it requires throwing all kinds of stuff against the wall to see what may or may not stick.
If the medical system would just do its job, the job that it’s supposed to do by training and by the very meaning of the Hippocratic oath, then perhaps this journey could be a little less do-it-yourself with a lot more certainty.
My hope is that the blaming and discrediting of millions of patients ends now and that mainstream medicine starts to do its job and stops uttering the sick-shaming statement “it’s all in your head.”
Lori Dennis is in private practice in Toronto, Canada. This blog is excerpted from a longer article that originally appeared on the website “MadInAmerica.” Click here to read the full version.
- March 13, 2017 at 8:45 am
- March 13, 2017 at 6:25 pm
- March 13, 2017 at 11:53 am
Lyme disease has cost me my adult life. I’ve heard all the psychobabble and been totally shredded by it. Doctors don’t, as a rule, want patients who have been forced to do their own medical research. I had a therapist note that I knew too much about Lyme disease, which was not true. It was her opinion that I should have focused on something else. My daily battle is for survival and the biggest hurdle in my way is this illness that I fight alone.
- March 13, 2017 at 3:36 pm
This is all so true. However, I believe that the insurance companies and the CDC do not want to legitimize Lyme due to the many infections and the costs to the companies. If just one official were sick chronically like so many and myself, they would certainly wish for better tests, research and treatments!!!!.
- March 13, 2017 at 7:13 pm
Evelyn White — There have been officials, at least one I know, who have had Lyme disease. I was so blessed to get 7 years, then jerked, of Lyme treatment, or I probably would be dead. My treatment was jerked. I mean POTUS Trump is 70 now. Not a political statement, but a difficult job or someone 70 years old. He is not sick. Here is a couple of articles about Chris Harris. He died at 67, which is not very old. The only treatment he got was a month at a time from various doctors who knew his plight. I am almost 8 years older than that now. Senator Harris tried, but did not get very far. One lone state senator. A fellow worker (not the senator), 8 years younger than me, told me he knew probably had Lyme, but never got any treatment. I was sicker than than my fellow worker when he told me that. My fellow worker died last year. I am not well but I am not dead either. Here are the articles about Senator Harris. An article in 2011 http://mylymediseasetreatment.com/lyme-disease-general/two-texas-lyme-disease-bills-target-gap-in-treatment/ Another article 2015. He lived a bit longer, probably because he got a little treatment, but Lyme got him at a relative young age, my opinion. When I first knew of Chris Harris, he looked quite young, but then I’ve known I had Lyme since 2002, so Senator Harris was still in his 50s in 2002. No mention at all of his Lyme disease in this article, such a shame. https://www.texastribune.org/2015/12/19/former-lawmaker-chris-harris-dead-67/
- March 13, 2017 at 4:22 pm
When they say it’s all in your head, I say, “True, spirochetes are in my head, you’re right about that!” And then I start a biological discussion with the healthcare practitioner about it so that they start to get a picture of what’s going on inside us and how it works, including mental symptoms.
And when I finally got diagnosed after 25 years of not knowing, including having seen 5 psychotherapists who couldn’t fix me, I then communicated with whoever I could find to let them know what I had. I recommend doing this, if you’ve seen psychotherapists when you didn’t know what you had, in order to educate them.
Also, a Stanford psychiatrist has conducted some research about recognizing presenting mental and physical symptoms of Lyme patients. Don’t know what’s happened to that research. Has it been published? Could it help the field?
- April 28, 2017 at 7:15 am
Hi I have had lyme for over 25 years as well. Most of my illness was resolved after taking an herbal suppliment. I know that’s crazy and not normal. I’m still effected by the disease and struggle with fatigue and other typical lyme annoyances. After this long is it possible to be treated? I believe that I probably have had this since I was a child.
I’m loving Lori Dennis book, “Lyme Madness”. The book validates that it’s not in our head and that we are not alone. I also find it easy to read and can understand the disease in a way that mentally I could not grasp with other books and articales on Lyme disease.
I would recommend, “Lyme Madness” for anyone with Lyme disease or for a family member that wants to understand what this disease is about.
May our lives as guiney pigs serve a purpose for future generations. Prayers for everyone suffering lyme madness.
- February 18, 2018 at 2:18 pm
Can you tell what herbal supplement? Thank you very much. Lyme sufferer here from Austria.
- March 13, 2017 at 5:36 pm
Sooooo true! So endlessly sad and far too true!!!! Yes it really has become the DIY of illnesses, for which we are ill equipped to do.
- March 13, 2017 at 9:07 pm
Thank you for sharing. I am so sorry for your family’s struggles, and I salute you for your standing by your son throughout his ordeal. As you know, not all families are so supportive. And I will gladly buy your book. I wish I had had your words around when I spent many years bouncing through scores of health care providers as my once-shining health dwindled to near non-existence; by the time I finally started treatment I had lost most all of the things you mention.
The only upside was that by going through this horror myself, I was able to spare our teen daughter some of the experiences of humiliation and abuse I had endured; I did not take her down the mainstream path when she also became infected (twice on 2 different continents).
Good luck in your mission of sharing the message!
- March 13, 2017 at 10:26 pm
Your pain is heart felt. As is your anger. Hold tight and battle on. The world suffers much. There are many heart aches. But Lyme is a “lost” cause. More so all TBDs. I wish so much for just one more day with my son. Some day the tide will turn. Each lunar cycle we survive is but one more hurdle cleared. Soon at some microscopic level a solution will be seen, A path not traveled revealed. Have faith in the way. Love will serve us all.Death to biofilms and cysts.
- March 14, 2017 at 7:41 am
Thank you for this article!
Our family has just gone through “mental health hell” with our 19 yo son who was committed to a “Behavioral Health Hospital” after a major, unexplained panic attack.
Right away he was immediately jacked up on a bunch of psych drugs. No one would listen to my concerns about probable Lyme Disease (instead, they accused me of having Munchausen syndrome!).
While my son was still locked away in the hospital, I took his medical file, including pictures of his strange rash, to a lyme specialist, who confirmed that he probably did have lyme. That doctor gave me a list of recommended tests to try to have the psych hospital run (which they absolutely refused to do, even though I offered to pay out of pocket for the tests).
We finally got my son out of the psych hospital (now with new brain damage from all the meds), and into proper lyme treatments as an out patient.
Thankfully he’s getting slowly-but-surely better and is back in college part time (vs in the state mental hospital, which is where he was headed if we had not pushed to get him back).
This was our first experience with “mental health” and it was the most awful, most messed up experience of our lives (and I’m a licensed healthcare provider. I feel sorry for people who have no experience navigating the medical system).
One has to wonder how many other people are locked away, doped up on unnecessary, dangerous meds, who really should be treated for lyme disease instead. It’s very scary and extremely sad.
- March 14, 2017 at 7:49 am
My daughter has suffered for 23 yrs with the debilitating effects of Lyme disease. We have walked down your road. I am so sorry for your son & others affected by this disease. Prayers for all.
- March 14, 2017 at 1:37 pm
I’m SO THANKFUL to see this ❗️
Sounds just like me in Tennessee . I’ve been dumped by everyone but my husband & parents. Church , friends, family. My doctor, admits he’s lost. Almost $100,000 out of pocket since 2011. Gotten so sick in between treatments. Not able to afford the guessing games that some drs are doing. So you try yourself.
This has been like a bad Sci-fi movie , all of it. I’ve talked to local news, Newspaper, State Reps back in 2011. Even talked to Mike Huckaby in person. CDC said there wasn’t that many cases in Tennessee. Man man over state of Tennessee Health Dept. calls me saying same thing, do you have bloodworm . I did and my husband faxed it.
He just called me back and said, Mrs. Greer you have the worst case Of Lyme I’ve ever seen in the State Of Tennessee, what treatment are you taking. I replied a type of Chemo Treatment through Pic Line. He told me how dangerous it was taking that in my bedroom without any Home Health Care. I told him Blue Cross Blue Shield dnied Home Health Care and The Chemo , but the paid for pic line.
He said good luck to you Mrs. Greer. That was it.
I’ve seen people go to jail for treating an animal as such.
- March 16, 2017 at 5:26 pm
I was living in Tennessee too when I first got lyme
.I think you just hit the nail on the head when you said they treat animals better. Its true because Vets know a hell of a lot more than doctors when it comes to tick borne illnesses and parasites.. I went to a vet friend and got some excellant advice and I now take animal meds for a sickness I should have been treated by my doctor with. Feeling better now. 50%. I would have been dead had I not taken animals meds and wormers.
I use ivermectin wormer and alternate between that and dog wormer, , and stevia liquid to kill spirochettes. Also use grapefruit seed extract anwith clove oil drops injected into it for pain. Wash daily with protex and take epsom salt and borax baths. When I get chills I instantly take 1 asprin and a vitamn c tablet every 50 minutes for 3 hours. It reallykills virus’ fast. drink alotof water. Also for chills I take cayenne pepper tablets when I eat a snack or meal.
- March 16, 2017 at 10:35 pm
Thank you for saying it like it is for all of us Lyme Warriors. No one ever thought to test me for it until I asked my Dr. to do the Lyme test because of all of my various ailments and symptoms which I had since childhood. I had a very bad case of it and several co-infections too. I have been treating for it all naturally and had a good ND who put me on the right path but she has since moved. I have yet to see a Dr. or be able to get the follow-up Blood work needed due to the crazy Insurance system and availability of a new patient visit date. I am being put off until the end of April and have been trying to get in since new bloodwork was due in Feb.
I have complaints out to Medicare about Poor Quailty and Lack of care in a timely manner and my insurance company United Health Care AARP. I found a Dr. that can see me in two weeks or so, and is an expert with dealing with Lyme and Functional Medicine and the whole body system and he is an MD so I am trying to get a referral outside of my insurance company to see him, and can not even get the bloodwork or a referral until April 20th after seeing the new Primary care Dr. so this is crazy and I am going to see what I can do to get some action on my care ASAP or may resort to getting an attorney involved. It is beyond horrible to get proper care from the Drs. that really no nothing about Lyme. I will have to pay out of pocket like I did last year and will see if I get denied a referral to see an out of Network Dr this time again. This is a diffferent Insurance Company which is as bad or worse then the one I changed from. Well good luck and good health to all of you out there.
- March 20, 2017 at 6:43 am
Dear Lori, thank you for posting about lymes dis ease .
I read with interest and with compassion. I am sorry to hear of your son and family journey with lymes. Thank goodness he has such a loving supportive mother in his corner.
I suffer an invisible illness. Sjogrens syndrome. Time and again, medical professionals label me, all in the head… I know it is their ignorance of sjogrens and their closed mind to researching what they don’t know. But such opinions hurt!
I get sick of their opinions without evidence. Yes, I have, and do work very hard researching and managing my condition. As you say, all left to us, extremely tiring, demoralizing and more…
Saying its all in the head just means I have no dignity whatsoever when I attend appointments with doctors and consultants.
I’m not sure things will change with regard to medical care giving. However, it is wonderful to know people like yourself truly care.
I wish you and your son all the best.
- April 14, 2017 at 2:26 pm
Have you found anything that helps? Would you consider sharing treatments that were successful/failed ?
- April 17, 2017 at 2:06 am
Lori is there any evidence of successful counselling or psychotherapy which has allievated symptoms
- April 17, 2017 at 6:17 pm
Y’all don’t forget that former President George W. Bush was diagnosed w/Lyme disease while in the White House serving as President! Yet still nothing being done….no talks of who treated he and his wife, etc…no awareness, no research, nada… things that make ya go “hmmmmmm”….
- August 19, 2017 at 12:30 am
Healed= Stephen Buhner Herbal Protocol. Many years sick. It works.
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