This is a real problem as lyme disease affects an entire family and is an isolating, confusing illness. Neuropsychiatric symptoms go along with the disease for many lyme sufferers.

I agree with Optimistik who said,

"I found most counselors don't have a clue, or they talk to someone who tells them Lyme disease is a bogus diagnosis, etc.

Mainly besides the Lyme disease, I found most counselors had no clue on how to counsel people with chronic illness."

This is a major problem.
How do I go about getting together a list of lyme sympathetic and/or literate mental health providers that could be added to the list of doctors?

Please let those who have the doctor info know about mental health providers who you have found to be good for lyme patients either from personal experience or from other lyme patients. Patients seeking these referrals would need to screen the therapists themselves for appropriate fit.

This is so important to the lyme community!
Thanks

Wish I could help. But I don't kow of any.

A few months ago when I was on the brink, I called my insurance to find out if they knew of a psych hospital (anywhere in the country) that I could go to that would treat both mental AND physical lyme. Boy were they a B*** to deal with telling me "Lyme Disease is a physical ailment, not a psychological one, blah blah" I went on such a rant at that lady. I bet she was not glad she picked up that phone call.

I think many of us could use IN-hospital care that seved BOTH emotional and physical. I can't even find a shrink that is very good, I always end up spending MY money educating THEM!

The Columbia Lyme Center and the research they are doing is critical. It will provide the empirical data about neuropsychiatiric manifestations of lyme and co-infections.

Now, in my own search in Oregon, there is a LLNeuropsychologist who will do evaluation but doesn't do on-going therapy. However, another one I talked to, really seemed to empathise with chronic illness (also wouldn't do more than an evaluation but offered to refer to a therapist who understands the ongoing struggles - in general).

So.... if it were me... I'd speak to a neuropsychologist who either does therapy or can refer to therapists who have an interest in chronic pain. Any neuropsych knows chronic brain stuff on a daily basis and the physical roots of some of the problems.

When I "shop" for medical help, I now have my brief questions by the phone and in the case of a therapist, I'd be asking "I'm looking for someone with an interest and experience in working with people with chronic illness/pain issues."

If the therapist does not have experience in neurological/psychological Lyme but has an *interest* in working with such a client, I can usually tell if we're a match or not in just 5 min of their time. Any health care person who will not speak like this without an appointment, I know is not a match.

I keep respectful and make my questions brief with no long winded details of my issues, since that's more of a session type thing. I no longer make appointments without this mutual pre-interview for any health care since I can't waste my time, or theirs, (and get my hopes up) going to appointments. The let down is too great besides, I'm not driving much at present.

There are lots of therapists who can work with chronic illness and it should not matter the cause. Finding someone who wants to work with you is most of the way there -- I've found some good help this way.

I used to work as a counselor and learned this trick along the way when we would match clients with therapists in the clinic. Sometimes I also ask their philosophy on chronic illness and that can be revealing in their answer. ;-)

Last Dec. 04, I took the "memory and intelligence" tests plus the awful MMPI, Minnesota multi-phasic index test of 567 T/F questions with "and, or, & but" in every question.

Before testing I left a 6 page printout of lyme disease encaphalogy, and where it showed the symptoms; I stated I had them all.

They disregarded everything I gave them, and their diagnosis:

"hypochondriact with somitization disorder" meaning I have the real physical ailments but not dealing with the stress causing MORE health problems! BS.

The memory & IQ did show some stuff.

I sent an e-mail to my friend who is a therapist, over in the east bay. She has a chronic illness herself, and may know someone in your area, but I know she has been sick lately, so don't know when I'll hear back.

I'll let you know what I find out. There are some out there, they are just few and far between. It would be great if we can collect some names to have on hand. It's just one more example of the work we have to do when we are so sick. Thanks for taking this one on!

This somatization thing is being massively misused to dismiss Lyme patients' symptoms (and also other groups of patients) without any evidence. When they told you you had "somatization disorder" they are not just saying your physical problems are made wrose by stress (which would be a reasonable argument) but saying they are CAUSED by stress altogether.

Here is what a Swedish psychiatrist has written about "Somatization":

"Emotional states can give rise to bodily symptoms; this is a matter of everyday experience. It is however, deceptively easy to exaggerate the importance of this mind-body connection.

The necessary question therefore becomes **what**, and **how much**, can reliably be attributed to **which** emotional causes and **for how long**. This can only be answered from experience and common sense, since the actual mechanisms arevery poorly understood and systematic clinical evidence is scarce.

A generation ago physicians usually trusted their own judgment, but in recent years the notion of 'evidence-based' mediine has altered this. We are now supposed to look for evidence, in the current literature. In some areas, such as somatization, there is simply no solid evidence, and yet the grapevine is silent about this....

There is no denying it; medicine uses a double standard in relation to scientific evidence. ...Scientific ideas normally have an interesting history, including a genealogy and a record of arguments pro and con. Important ideas rarely enter the scene fully fledged and unruffled by controversies, but somatization was presented without even a reference to psychoanalysis.

Today we are sometimes told that somatization is **the** disease process to consider when physicians fail to explain the symptoms of the patient. The rather too flattering implication would be that medical science can now explain so many things that most of the remaining problems can be bundled together under a collective psychiatric label without further investigation.

The truth, however, as we have seen, is that causal understanding is poorly developed...

For some years now I have been convinced that the concept of somatization is being exploited for reasons that are only partly transparent.

Scientifically there is no basis for the remarkable expansion of this field. The lives of large numbers of patients are touched and often made more difficult by what is going on.

Psychiatry is apparntly being abused, and it is of course very important to find out more about the background in order to do something about it. This is an area where concerned citizens have already begun to organise..."

Per Dalen, MD,PhD,
Associate Professor of Psychiatry,
University of Gothenburg, Sweden

(in foreword to "Skewed" by Martin J Walker, Slingshot Publications, 2003)

Lisa

quote:

---

Originally posted by bettyg:

They disregarded everything I gave them, and their diagnosis:

"hypochondriact with somitization disorder" meaning I have the real physical ailments but not dealing with the stress causing MORE health problems! BS.

The memory & IQ did show some stuff.

bettyg

---