posted
Any Lyme patients been mistreated by a psychologist or other mental health professional?
I am putting together a presentation for child psychologists about Lyme disease.
In my area, several children with Lyme have been referred to psychologists who explain to the parents that the problem is psychosomatic in origin and that the parents should require the child "get out of bed" and "go to school."
Many parents delayed getting a Lyme diagnosis and treatment as a result of believing that the psychologist was right.
I would like to assist in preventing this from happening. It obviously makes my profession look bad, not to mention the fact that it can destroy families.
Any stories you could share would be appreciated.
Posts: 129 | From Virginia | Registered: Feb 2008
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I am a teen with Lyme and my story is on my MySpace page. The link to it is in my signature.
I wasn't believed by anyone and I feared that I would die before getting someone to believe me.
My parents thought that I was looking for attention, so they forced me to see a psychologist.
The psychologist told me that I had OCD.
She would ask me to say every symptom I have and for every one of them she would twist them around to make it somehow sound psychosomatic and would nearly yell that they were stress or panic attacks.
Then, she would talk to my parents alone and would convince them that I was looking for attention.
She even told my mom not to let me stay home.
My mom listened.
My mom refused to take me to doctors anymore.
It took me 2 whole years to convince my mom to take me to a LLMD. My mom threatened me that this was the very last doctor she would take me to.
By the grace of G-D, my bloodtest that was sent to IgeneX came back positive for Lyme.
My mom felt very guilty, and still does, about not believing me.
When I asked her, she said she wouldn't make me go to a psychologist anymore.
But I went, alright! For one last time. To show her that I did, indeed, have Lyme all along.
She didn't even apologize.
Good luck to you with your talk! Let me know how I can help!
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
Absolutely! Sometimes I wonder how a person could not believe someone. After many years, a person who was looking for attention would have given it up already if nobody believed them. We really need more awareness to invisible illnesses and better advocates.
-------------------- "Life doesn't have to be perfect to be wonderful."
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
yes, i was institutionalized for five months in two separate psych wards (court-committed for six) and diagnosed with somatic delusional disorder by two psychiatrists, one of whom even tried to force ECT on me. this was when i was devastatingly ill with lyme, so sick i was certain i would die (completely bedridden, 90 pounds, out of my mind, couldn't think at all, couldn't read, could barely walk, etc, etc), and no one believed me despite my CDC positive western blot from igenex.
i finally got released when the third psychiatrist to whom they assigned me actually believed i was ill. i'd long given up trying to convince anyone i had lyme; as soon as the word 'lyme' escaped my mouth, i was guaranteed they'd shut down and start scribbling in my chart about my 'delusions.' but i did rehash the story for him and told him i was sick, physically sick, but that no one believed me and i didn't expect him to, either. he took one look at me, shook his head, said 'i believe you, i'm so sorry,' and signed my release papers.
i was let out the following week and began lyme treatment shortly thereafter.
to this day (over three years later), i'm surprised i didn't die in those hospitals.
posted
Wow, heiwa... You're indeed lucky to have gotten out. What a nightmare!
And MysteryGirl... what a terrible thing to go through at a young age!
Many times, psychologists will figure out that the patient is truly ill.... but I guess it's not a fail-safe thing!! Scary!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
If your only tool is a hammer, every problem looks like a nail.
Sorry Heiwalove, and MysteryGirl, that you went through all that. My heart goes out to you. And I honor you both as strong women and survivors.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Lots of people with Lyme have been abused, and not just by psychologists! I remember a story we published in an old Lyme Times about a girl from Texas whose drs didn't believe she had an organic illness, but she couldn't walk. She was hospitalized and they would force her to get out of bed so she would fall on the floor. They wouldn't help her up and accused her of faking it. I can see how it would be difficult for a healthcare professional - you don't want to enable something, and if you don't understand it and think it is psychological.... what can you do?
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I guess as a provider, what you can do is be of the mindset that the patient is to be believed until or unless proven otherwise. In my training, a number one rule was to AlWAYS rule out any possible medical conditions FIRST.
I frankly don't believe in conversion disorder, and put very little stock in somatization disorder as well. Stomachahes, headaches, some aches and pains from stress...yes. But an entire complicated illness? No way in my book.
When patients are referred to me for somatization disorder, I immediately think Lyme Disease. I have no hesitation in telling a physician I have ruled out somatization disorder as a diagnosis.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I am a psychologist and also the mom of a Lyme suferrer who was also told by numerous docs that her symtoms were psychiatric. Before we finally got a diagnosis of Lyme when she was 17, my daughter had been on numerous psych meds and finally placed in a day program for several months. Of course, when she could not getout of bed for the van early in the morning, they started comnplaining about noncompliance...yada yadayada. My gut told me that she had more than psychiatric issues..
I have always had a policy in my practice to rule outmedical explanations for symtpms before leaping psychiatric, especially explanations of the somatic bent. I work closely with primary docs.
Sadly, most practitioners don't know anywhere near enough about Lyme disease...mental health as well as Medical providers included.
Part of the tragedy of this illness is that it often is the case that others begin to blame tyhe victim out of sheer ignorance and frustration.
Posts: 217 | From New Jersey | Registered: Apr 2007
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posted
Amen to all of your replies. I'm sorry it's taken me so long to respond. Thank you for sharing your stories.
My field has not done any favors by teaching physicians about phenomenon like somatization disorder. I say this only partly in jest. It seems that physicians jump on this bandwagon anytime they cannot explain symptoms medically rather than ask for the advice of someone trained appropriately (and rigorously) within the mental health field.
I'm glad to hear that at least a few mental health professionals have "stepped up to the plate" and insisted that the symptoms could not be explained by a psychiatric diagnosis.
Posts: 129 | From Virginia | Registered: Feb 2008
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When I was a practicing social worker, I was truly clueless about lyme disease. Now that I've had to learn about it, due to my son's illness, I often find myself thinking back to the many people that I worked with, and wondered how many of them had lyme and no one knew.
There is one case that really strikes me as a person who probably has lyme, and unfortunately, this person did not get help through mental health professionals.
This individual was a successful, reputable psychologist, who suddenly 'crashed.' She had all kinds of 'somatic'complaints, had become wheelchair bound, for no medically known reason, and was ultimately committed to a state hospital.
At that time, I was a supervisor in a community outreach program, and she was on the case load of one of my case managers. When a person is in a state hospital, it is difficult for a comunity provider to have any input, particularly in regards to medical issues, but if I had known then what I know now, I most certainly would have done my best to get the state hospital consider lyme.
It is sad to say, but to my knowledge, there is no training out there for mental health professionals, and even though there is signifcant research indicating that lyme can have neuropsychiatric symptoms, I have yet to meet a psychiatrist, social worker or psychologist (with the exception of the one that did the neuropsych eval on my son) who is literate in regards to lyme.
That said, I know that there are some out there (There is one local psychiatrist that I am aware of) but they are too few and far between.
My experiences with my son, and from interacting here on lymenet, will most certainly change the way that I practice when I do eventually return to work, particularly in regards to those cases that have 'unexplained somatic complaints.'
take care, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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posted
My neuropyschologist was very rude to me, when I told him I thought he hurried through my results. His pay back to my Internist was to say he thought I was exaggerating my symptoms.
Now that I have been properly dxd, I am writing a formal complaint to the medical board.
Somehow we have to get their attention!
Posts: 1 | From Virginia | Registered: Jul 2008
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lymeloco
Unregistered
posted
I don't believe for one second that any of these so called professionals know what the hell they're talking about!
Most get into this profession because of problems of there own and think by helping others will resolve their problems.
The reality is that some of them have issues themselves that haven't been resolved and try to resolve them through you.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi hokie,
I would suggest looking through the work of Dr. BF of Columbia. He has done a lot of work on children and neuropsychiatric Lyme. And btw, his work before Lyme centered on hypochondrasis, so I think he knows the difference.
posted
My Private long term disability insurance sent me to a neuropsychologist of their choosing - btw, this was at a prestigious University affiliated hospital
I was very naive back then, didn't realize the outcome was pretty much predetermined...
So, I sat through a full day of testing with hardly any breaks, was actually discouraged from taking breaks, etc I thought I was going to pass out
Well, a month or so later I received a letter from the disability insurance co.
My disability was being terminated based on the results of the nueropsych testing!
It took months of complaining, threats, and phone calls to get a copy of the neuropsych report they based this decision on
When I finally got it I was shocked. Although it cited 2 of about 30 medical records the disability insurance had about my case, this neuropsychologist stated:
I did not have Lyme disease
any difficulty on the cognitive testing was based on a baseline low IQ
I was unkempt looking (my hair especially)- which was suprising to her because of the previous professional nature of my job before I had to stop working due to Lyme..
So, I got a lawyer and got the denial overturned.
Still, I felt very violated by this experience -
I still feel angry writing about it 4 years later and knowing this woman is probabally still out there writing bogus reports
I later heard she probablly got $5000 for that one day of testing and writing the report she did
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Do any Lyme treating psychologists, doctors or other health care professionals here on Lymenet, wish to be added to the Lyme referral list that patients receive when seeking Lyme Friendly and Lyme Literate health care providers?
Whether you treat the disease directly or just help patients cope, it's important patients have somewhere to turn.
E-mail me if interested, and if you are,
Name Practice Name Address Phone Fax E-mail Webpage Specialty Sub-specialty, Notes (Anything the patient should know about you and your care.)
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I don't know if you already have the info you need, but I couldn't resist adding that of all the people I have seen over the last 27 years for me and 13 years for my daughter, her psychotherapist was the worst!
She told my daughter that she was mentally ill and that she really needed help. She recommended an inpatient facility at one point.
She also told me that I was "over the top" enmeshed with her and strongly urged me to get help myself with our "serious mental problems"
She breached patient confidentiality by telling my daughter some things I had said to her privately without telling me before hand.
This was all last year when my daughter was so sick - her legs looked like she had Parkinson's, constant fevers, rashes, headaches, stomach aches, and much more.
My daughter is still so traumatized that she won't say her name and has nightmares about her.
I am so grateful that my husband & I kept persuing a diagnosis..
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I am such the opposite; I am always trying to convince my patients they have Lyme Disease and I think they look at me like some Lyme fanatic or something!!!
I have several that I just know have it; but it is so hard to convince them to take the necessary steps to get treated! They are so easily swayed by their PCP and negative Western Blots, and accept the Fibromyalgia diagnosis....just frustrates me so!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thought I would join in with my daughter's story and the treatment of her psychiatrists, therapists and others.
Short story: She got Lyme when she was 10 and wasn't diagnosed until she was 16. Now she is 17. And is finally a little better.
At 15 she was diagnosed with depression, anxiety, panic attacks, insomnia, eating disorders, ADD and lots more. When she tried to kill herself she landed in a locked ward of a children's psych hospital for 6 weeks. She told us she didn't want to kill herself, but she didn't want to live either. She eventually spent 13 weeks hospitalized.
The well-trained (Harvard) psychiatrists all said she was severly mentally ill and we should consider an institution. Her eating disorder specialists said it was mal-nutrition and that an inpatient residential treatment program was our only help.
No one asked about physical symptoms like headaches and joint pain, eye pain, ringing in the ears... We also saw numerous other docs, all tops in their fields at top hospitals of opthamology, rheumatology, allergies, orthopedics...
The neurologist said she couldn't sequence numbers and words, find words, had ADD symptoms but didn't have ADD. After talking to my daughter's psychiatrists the neurologist said he would not see her again. There was nothing he could do.
When we suspected Lyme we had long discussions with the psychiatrists about why I and 2 LLMDs thought it was Lyme and why they thought it was mental illness. We went around in circles and eventually we fired them. They believed I was the crazy mother. These were Harvard-trained MDs at a "world class" psychiatric hospital!
They said I didn't want to admit that genetic and environmental factors caused my daughter's mental illness and I was looking for an excuse by saying it was Lyme. There were no genetic or environmental factors that we or they identified.
I sent them articles on Lyme from medical journals, brochures, asked them to call Dr. D. and Dr. R. the NYC psychiatrist but they wouldn't. I also offered to introduce them to Dr. R.
Her teachers said she was lazy and trying to get out of going to school and doing athletics. She had been an A student. They gave her failing grades when she was in the psych hospital. They thought she should have been able to keep up with her assignments. I wasn't believed when I said she was not allowed a writing instrument.
My daughter now has a new psychiatrist. Before I interviewed him I asked him to read about Lyme and to try to understand my daughter in this context. I gave him phone numbers of Dr. R. and Dr. D. and I gave him about 12 inches of studies and articles on Lyme. He did his homework and believes the Lyme diagnosis. His job now is to help control the depression, anxiety, insomnia, ADD and eating disorders with drugs. Meanwhile her LLMD treats with ABX.
My own PCP told me I didn't have Lyme, even though I was positive on 12 bands and my two LLMDs throught it was Lyme. He told me to get a psychiatrist. Yeah, like that will help!
We are all making progress.
Sorry it's so long. That's the short version!
Posts: 79 | From Rhode Island | Registered: Jun 2008
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