Role of psychiatric comorbidity in chronic Lyme disease......

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dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 12/6/2008 3:31 AM (GMT -6)   
... a friend emailed me this today and i thought i should share it here;


Role of psychiatric comorbidity in chronic Lyme disease.

Hassett AL, Radvanski DC, Buyske S, Savage SV, Gara M, Escobar JI, Sigal LH.
University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick.

OBJECTIVE: To evaluate the prevalence and role of psychiatric comorbidity and other psychological factors in patients with chronic Lyme disease (CLD). METHODS: We assessed 159 patients drawn from a cohort of 240 patients evaluated at an academic Lyme disease referral center. Patients were screened for common axis I psychiatric disorders (e.g., depressive and anxiety disorders); structured clinical interviews confirmed diagnoses. Axis II personality disorders, functional status, and traits like negative and positive affect and pain catastrophizing were also evaluated. A physician blind to psychiatric assessment results performed a medical evaluation. Two groups of CLD patients (those with post-Lyme disease syndrome and those with medically unexplained symptoms attributed to Lyme disease but without Borrelia burgdorferi infection) were compared with 2 groups of patients without CLD (patients recovered from Lyme disease and those with an identifiable medical condition explaining symptoms attributed to Lyme disease). RESULTS: After adjusting for age and sex, axis I psychiatric disorders were more common in CLD patients than in comparison patients (P = 0.02, odds ratio 2.64, 95% confidence interval 1.30-5.35), but personality disorders were not. Patients with CLD had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain (P < 0.001) than comparison patients. All psychological factors except personality disorders were related to level of functioning. A predictive model based on these psychological variables was confirmed. Fibromyalgia was diagnosed in 46.8% of CLD patients. CONCLUSION: Psychiatric comorbidity and other psychological factors distinguished CLD patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes.
PMID: 19035409 [PubMed - as supplied by publisher] Arthritis Rheum. 2008 Nov 26;59(12):1742-1749

JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 12/6/2008 6:34 AM (GMT -6)   
dorit - I looked up another study that "AL Hassert" did and I am blown away by the outrageous statements about LD.  This is just another attempt to "shore up" the incorrect position of the IDSA that THEY refuse to let go of.  They are making this into a physical/mental disorder instead of taking any kind of effort to research an accurate test and treatment for LD.
 
First they complain that "we" (those of us that 'think' we have LD, or once had LD but no longer do, etc. etc.) keep tiny little detailed records of our symptoms:
 
These people chronically monitor their symptoms, often documenting changes in detailed diaries that focus on even the most subtle changes in their apparent health status.  In this way the overanxious “worried well” can evolve into patients with MUS conditions, in this example, chronic Lyme disease.
 
And then it goes on to say that "we" can't articulate what we are feeling.  I don't know why we can't tell someone what is going on since "we" keep all these tiny little notes about ourselves:
 
For our purposes, aporia is a state of confusion, self-doubt, and exhaustion! This manifests in patients as an inability to adequately formulate and articulate their complaints, their fears of unknown threats/disease, and their elusive sense of anguish. They are “stuck” and thoroughly unable to deal effectively with their health care needs. Defensive anger stems from the threat of removing their diagnosis; illness behavior in their experience of chronic Lyme disease has become their only fundamentally acceptable “language” for expression of their distress; to borrow a term from the psychology literature, it is their “ego-syntonic” language.
 
And it ends with a lovely note:

Any attempt to deny these people their diagnosis or access to their chosen physician or their chosen modes of therapy is met with anger, voluble resentment, and active protest.
I'm sick and I want to get well.  I do not keep track of "all my little symptoms". I can articualte how I am feeling.  I can discern what pain is.  And, I don't care what they call it (Lyme disease, Fibromyalgia, CFS, eating cat poop disease, etc.) I just want my life back.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 12/6/2008 6:41 AM (GMT -6)   
In other words.... it's a publication all prettied up.... to say, we aren't looking for an accurate test or treatment... because "it's all in your head".
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 12/6/2008 7:15 AM (GMT -6)   
So if this is the case. that Lyme is a really a mental disease, then there are A LOT of doctors doing a piss poor job of treating this "mental condition." There are more drugs for mental disorders then any other type of disorder of the human body. With all this "accurate" research why haven't these same brilliant doctors come up with a recommended mental treatment for this "mental condition," backed by research that proves their theories?

This is what really bugs me about the medical community as a whole. The have the luxury of spouting off all these narrow minded theories but they are not held accountable for offering a solution or following up with testing to validate their conclusions. In any other business, no one wants to hear theories, they want solutions. But for some reason doctors get to half-arse it and just tell us what they think...because they went to school for an extra (and wasted in most cases) 4 years.

JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 12/6/2008 8:20 AM (GMT -6)   
In my opinion, the article I sited is an excercise in circular thinking/reasoning..... at times they even contradict themselves (which is a result of the circular thinking). This article is nothing more than pretty swindow dressing to disguise the IDSA's complete incompetency when it comes to treating LD.

I was told to keep track of my symptoms by both my LLDr. and my psychologist.. I don't, but my LLDr. has a 3 page long list of symptoms that I rate on a scale of 0 to 10 at the beginning of each visit.... so that is how I keep track, I know that this is in my medical file at my LLDr's office. I also right down stuff like when my periods begin and end and any MAJOR new symptoms or changes on my calendar. And this article claims that by doing so I am engaging in some self fulfilling prophesy; ie - Lyme disease or MUS - which is an acronym for "Medically Unexplained Symptoms" Syndrome - all of which really piszes me off - but, we can't get "angry" because - "defensive anger stems from the threat of removing their diagnosis."

MUS? Why doesn't someone research why someone has "MUS"? Why don't they work on a real explanation other than "it's all in your head"?

And then if we "protest", we're upset because some uninformed doctor or shrink thinks we're angry that our diagnosis has been "removed". Please, I would give up a limb right now just to have my LD GONE - then they can remove the diagnosis.

ARE YOU KIDDING ME?????? - I'd rather eat dog poop once a day for the rest of my life than have this disease. It's a complete white wash designed to again cover-up the complete incompetency of the IDSA. What I want to know is why they have to so feverishly hang on to the idea that chronic LD doesn't exist? Why are "they" so invested in this theory? Why do "they" get so angry when "we" disagree? Why do "they" find it necessary to haul doctor after doctor before a review board? - seems like "they" need to see a shrink for their MUDTDLD - Medically unnecessary determination to deny Lyme disease - syndrome.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 12/6/2008 8:37 AM (GMT -6)   
WOW - thank you bouth for your comments! and JELAINEP - thanks a lot for the link!
I was really curious about comments here - one should know that a large part of the lyme patients here (europe) is almost thankful for such articles because its a kind of "proof" that we are not completely mad...means: that some ("unnormal") mental conditions REALLY ARE related to lyme. having something like this makes docs willing to prescribe abx and to "believe" us ( ...at least its worth this)
such articles are a litte bit like a super small holy grail... nobody seems to dare question it at all.. this is at least my personal oppinion - but I wanted to hear opinions from this forum - something new, other positions if they exist.
Obviously they do exist! Which makes me a little bit happier on this grey grey saturday in december....

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 12/6/2008 9:11 AM (GMT -6)   
I have to say, I have lyme, I believe in Lyme, I believe in CLD and I also believe lyme comes with neurological disorders, now having said that, I also believe the report that Jen showed has some truth to it.
But to paint all lyme sufferers with the same brush is like saying all people who collect welfare are lazy.

Since being on this lyme journey and since I was also dx with lupus, I have done a lot of research and spoken to ill people like myself.
I'm on msg boards for chronic illness, for fitness, for cooking, for naturopathic medicine and I can tell you, the most aggressive, hateful, mean and downright spiteful people are those from illness msg boards.

I do think there is some truth to that report Jen and it's VERY unfortunate, but there are always going to be dramatic sick people who dwell and "drown" in their illness that make other sick people look crazy.

I think some folks become familiar and comfortable in their illness and don't want to say they are well b/c then they would have to face change. Change is a tough thing to handle. Some sick people once well would have to go back to work, be social again and or just be happy and many people find illness easier than having to "live" again.

I also notice people are quick to blame anxiety/depression on illness. I've been having servere panic attacks since I was 19. I started to become physically ill at the age of 27. I was in and out of dr's office's but never got a dx. Which was a benefit since I could not "name" my illness.
Finally two year ago when my symptoms got worse, I was dx with Lupus, then lyme. My anxiety went through the roof. Why was that, because of the change (leaving my job, depending on others, feeling ill, dizzy etc) or because lyme all of a sudden took over my brain.
At my first LLMD appoint, within 15 mins, the LLMD said "You've prob had lyme since you were 19 when the panic attacks started"
HOW irresponsible to assume that after knowing me for 15 mins. She is a great LLMD, but is on the band wagon that every ache and darn pain is related to lyme.
My Dad has panic, my sister, my aunts etc. It's possible my anxiety is genetic or learned behavior since I came from a home with anxiety and depression. But then again, maybe it's not.
I'm in no way saying anxiety does not accompay illness, but not in all cases
Who knows.

My opinion on this report is conflicting.


.


The world breaks every one and afterward many are strong in the broken places

Post Edited (peacesoul) : 12/6/2008 8:14:25 AM (GMT-7)


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/6/2008 6:58 PM (GMT -6)   
When it comes to diseases - we all sure picked a sh1tty one!!!!!!!!!
 
blush   devil nono scool smhair smurf yeah wink turn tongue :-) :-) smilewinkgrin skull sad rolleyes shocked redface shakehead eyes confused cool idea mad cry
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 12/6/2008 10:12 PM (GMT -6)   
How many of you would like to drop a tick or two down their shirt?
9/28/08 - 11/8/08 100mg Doxy b.i.d. 42 days
11/5/08 - 11/20/08 Salt/C, grapefruit seed extract, COQ10, anti-inflammatory herbs with cat's claw & omega 3.
11/20/08 -> reduced Salt/C, omega 3, Acidolphilus and Saccharomyces(friendly yeast),low carb, no wheat, no alcohol, no yeast, no caffeine, no sugar.
Ceftin 500mg, 2x per day; Plaquenil 200mg, 2x per day; Mepron 750mg, 2x per day; Zithromax 500mg, 1x per day.


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 12/7/2008 2:20 AM (GMT -6)   
woodswalker: have you seen this unbelievable video on youtube with that man walking through the woods pulling a blanket behind him to catch ticks which he puts on his arms afterwards, waiting till those bit him, then going to a doc who pulls them out again, while "teaching" us all that there is not much risk to ever get lyme (or something ele)............. I have never seen something like that! HORRIBLE! skull

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 12/7/2008 7:40 AM (GMT -6)   
woodswalker said...
How many of you would like to drop a tick or two down their shirt?

Wishing others harm is not the answer. I would not wish lyme on anyone!
The world breaks every one and afterward many are strong in the broken places


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/7/2008 2:39 PM (GMT -6)   
Instead of saying we're all nuts (which they did to our friends with fibromyalgia by the way) why don't they look for a test that can explain our common symptoms -- CLD?

Instead of wasting tax payers money on B.S. research that is used to discredit patients and disprove treatments -- the only thing we have in our arsenal -- antibiotics, why don't they find a @#$% cure?

Woodswalker - You point is well-taken especially in light of the fact that I don't know a single LLMD who hasn't had Lyme or had a parent who had Lyme.

So if it doesn't exist or is some kind of psychiatric disorder, give me my vitamin P (prozac) and be done. Unfortunately, vitamin P doesn't work either.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/7/2008 5:53 PM (GMT -6)   
hopingToFindCure said...
Woodswalker - You point is well-taken especially in light of the fact that I don't know a single LLMD who hasn't had Lyme or had a parent who had Lyme.

So if it doesn't exist or is some kind of psychiatric disorder, give me my vitamin P (prozac) and be done. Unfortunately, vitamin P doesn't work either.
Woodswalker - Use plastic ticks, just for the "freak-out" factor, and avoid the "moral" delimma.
 
hopingtofindcure - I remember asking my husband and shrink - on more than one occasion - that if it was "all in my head" then I wanted to be committed to a mental hospital so that I could get ot "out of my head".
 
What's starting to bother me a lot - about the paper by Dr. Hassert - is the continual reference to "these people".  I wonder if this piece was about cancer patients or any other "diseased" people, he would refer to them as "these people":
 
These people chronically monitor their symptoms...
Any attempt to deny these people their diagnosis...
Most of these people are functional, with varying degrees of (sometimes exaggerated)...
Any attempt to deny these people their diagnosis or access to their chosen physician or their chosen modes of therapy is met with anger, voluble resentment, and active protest.
 

We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/7/2008 6:10 PM (GMT -6)   
dorit said...
Role of psychiatric comorbidity in chronic Lyme disease (AND ALL ALONG I THOUGHT CHRONIC LD DIDN'T EXIST) .
 
Two groups of CLD patients (those with post-Lyme disease syndrome and those with medically unexplained symptoms attributed to Lyme disease but without Borrelia burgdorferi infection) were compared with 2 groups of patients without CLD (patients recovered from Lyme disease and those with an identifiable medical condition explaining symptoms attributed to Lyme disease).
 
RESULTS: psychiatric disorders were more common in CLD patients than in comparison patients, but personality disorders were not. Patients with CLD had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain  (HOW CAN THEY MEASURE ANYONE'S PAIN? - MAYBE THIS DISEASE JUST SENDS US INTO A NEW STRATOSPHERE OF PAIN THAT THEY HAVE NO MEASURING DEVICE FOR?)
 
CONCLUSION: Psychiatric comorbidity and other psychological factors distinguished CLD patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes. MAYBE BECAUSE THERE IS NO ACCURATE TESTING OR TREATMENT - PERHAPS, COULD THIS BE THE REASON?????
WHAT IS THE DIFFERENCE BETWEEN THESE TWO SETS OF PATIENTS?
1. medically unexplained symptoms attributed to Lyme disease but without Borrelia burgdorferi infection
2. those with an identifiable medical condition explaining symptoms attributed to Lyme disease
PS - I got busted again for my colorful language.  blush   devil   shocked rolleyes shocked devil blush   My apologies if I offended anyone.
 
 
 


We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 12/7/2008 7:25 PM (GMT -6)   
I'm an LCSW. I have lyme, my husband has late stage chronic lyme, I have some clients with late stage chronic lyme and colleagues in my peer supervision group who have lyme disease. A colleague and I are working together to plan a workshop in our area for mental health professionals on lyme disease and psychiatric/neurological issues. Our goal is to educate others in the mental health field to help identify individual's who may have lyme disease, to educate about the need to advocate and direct for appropriate testing and treatment(llmd vs idsa or pcp) and to recognize neurological and psychiatric lyme disease. This disease itself and the stress of being told "it's in our heads" and the stress of not having medical care available and having to fight for diagnosis and treatment is surely enough to stress us all out and feel depressed and anxious. There is genetic or preexisting anxiety or depression in many(including myself) yet then there is also increased anxiety and panic or depression or bipolar/psychosis that I've seen associated with neurological lyme. One of my first symptoms was panic attacks and although I have genetic anxiety, the anxiety I had early on with lyme was in a totally different realm. It isn't one or the other, not black or white.
The article really misses the boat about the complexity and realities of this illness.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/7/2008 8:10 PM (GMT -6)   
lillimul - Please keep us updated I appreciate your unique perspective.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 

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