posted
I called him a couple of times before I got a response which was today. Apparently maybe many of you know this but there has been quite a response/inquiry to his study.
There are two phases to his study and YES he does believe chronic lyme does exist and has spoken to or at ILADS conferences...I signed up for this study as there will be more than one group not sure which one I will be put into...there is a cognitive piece and a psychological piece in regards to sessions
I had mentioned to him if it betters me and other lyme people why not...He is very helpful and understanding especially when I asked him what side of the fence he is on...I explained why and he said I understand and accept your question...
I do not know if I broken any protocols mentioning this but if I did I am sure I'll hear about them....
[ 04-17-2009, 08:14 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The only comments I've heard about are from the ducks point of view.... and they think it is a decent idea.
THAT makes me wonder and worry... on top of the fact the ducks are on a mission... again... to prove chronic Lyme isn't caused by spirochetes...
But that we were mentally ill prior to getting a tick bite... that we say we have more pain that we do... that we are lazy, blah blah blah...
As you can see by this study.... it doesn't do anything helpful for us.
And in one of the two studies I've read there was mention of doing more studies to follow up.
Since this is being done by Robert Wood Johnson... and Sigal is on it..
I advised others to run, not walk to the nearest exit.
Check this out and the next post I am putting up.
Arthritis Rheum. 2008 Dec 15;59(12):1742-9. Links 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, NJ 08903-0019, USA. [email protected]
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Someone busted their chops about this study... obviously those who read it and understood it (many did actually)... and here is one response that was published... from Phyllis at CALDA.
Chronic Lyme Disease: Psychogenic Fantasy or Somatic Infection Journal article by Phyllis Mervine; Environmental Health Perspectives, Vol. 111, 2003
Journal Article Excerpt
Chronic Lyme disease: psychogenic fantasy or somatic infection
by Phyllis Mervine
Sigal and Hassett published an article about Lyme disease in the EHP Supplements (Sigal and Hassett 2002), suggesting that chronic Lyme disease is "psychogenic."
I do not think that Sigal and Hassett, nonpsychiatrists, are qualified to speak about psychiatric matters.
I, however, actually have had the disease, which they characterize as "medically unexplained," for over 25 years and have 15 years of experience as a patient advocate and educator. I beg to differ.
Many reports in the peer-reviewed medical literature substantiate the notion of persistent infection.
Borrelia burgdorferi, the causative organism, has been cultured after "adequate" antibiotic therapy from the brain, eye, heart, spleen, spinal fluid, skin, lymph nodes, joints, and synovial fluid (Cimmino et al. 1989; Cimperman et al. 1996; Haupl et al. 1993; Liegner et al. 1992; Oksi et al. 1996; Patmas 1994; Peter et al. 1993; Pfister et al. 1991; Preac Mursic et al. 1993; Reimers et al. 1993; Schmidli et al. 1988).
Table 1 provides information on some of the articles supporting persistent infection. A more complete listing of Lyme disease abstracts may be obtained from the Lyme Disease Network (2002).
I and the many other Lyme patients I know are neither "confused" nor "insecure." We did not seek a "societally and morally acceptable explanation" (Sigal and Hassett 2002) for our illness; we sought a scientific and medical explanation.
We have been fortunate enough to find informed doctors to treat us with long-term antibiotics and to return to our normal activities.
In my experience, patients with Lyme disease who are treated for psychogenic illnesses alone do not fare well.
`````````````````````````````````````
And this is the bad ducks response trying to defend publishing the lousy study they did.
If you want to read more you must pay the web site.... so this is all I can get of their response.
You can tell we have their number by their childish and vile response... and the studies are not going to help any of us... only hurt us more.
They are trying to bury us. These are their tools.
Chronic Lyme Disease: Sigal and Hassett's Response
Journal article by Leonard H. Sigal, Afton L. Hassett; Environmental Health Perspectives, Vol. 111, 2003
Journal Article Excerpt
Chronic Lyme disease: Sigal and Hassett's response
by Leonard H. Sigal , Afton L. Hassett
Nowhere in our article (Sigal and Hassett 2002) do we minimize or devalue the pain or suffering of patients with chronic Lyme disease nor do we state that such patients are "crazy" or "delusional."
Further, we do not dismiss the possibility that some such patients actually have infection that persists despite adequate prior antibiotic treatment.
Nonetheless, we take this opportunity to again issue a caution against making the diagnosis of chronic Lyme disease in the absence of objective clinical and microbiologic evidence of infection.
Without demonstrable physical findings and laboratory proof of the persistence of Borrelia burgdorferi, the diagnosis should remain in significant doubt.
Certainly, a few, often poorly documented case reports claiming persistence (many in Europe, where the organism, the vector, and the ambient human immunogenetic types are different) cannot be a basis for the widespread diagnosis of chronic infection in certain regions of the United States and in certain practices.
We hope our article (Sigal and Hassett 2002) will help educate physicians and assist them in being more sensitive to their patients and to more correctly identify the true underlying cause of their patients' symptoms in a compassionate manner.
However, many patients are misdiagnosed with chronic Lyme disease, a diagnosis often made to provide an explanation for a bewildering array of complaints within an acceptable framework for both patient and physician.
Instead, these patients deserve the truth.
Improvement and cure require provision of a correct scientific and medical explanation and properly directed therapies. For many of the pat...
EDIT- I just found a link to the rest of this response... for free. It gets worse... and worth reading to see what they REALLY think.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You can see by the above response that they intend to force the "truth" down our throats...
There is no chronic Lyme.. and then report their findings to our "compassionate" doctors so they will understand that we are just mentally ill and there is no "active" infection.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
They have a way of making their point of view sound so official and authoritarian. It never ceases to frighten me in a cold horror-kind of way.
I read on a post a few days ago that a woman on this forum had two wonderfully brilliant students who were doing amazing scientific or medical type studies (I can't remember which) at top-notch universities here in the US.
Her adult children, of whom she was very proud, was at the same time dismayed to learn that in their higher education Lyme disease was not being given credence or respect.
That is an unfortunate repercussion of the IDSA. They are not only ruining things for us, but are misguiding bright, young scholars who could otherwise have been trained to help.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
I am missing your point TINCUP completely.... I am finding various methods are needed for coping with this illness and for which the LLMD's can't agree on a specific protocol which leads many to seek out and find other LLMD's
If Fallon had ran such a study would you be gloryifing him? Yeah...Grant Man
What do you make of Trunzo talks at ILADS conferences? CBT is suppose to be threaputic..but I guess because it's not accupunture or yoga or meditation or doesn't fit within lymenet's defined realm of help it's nowhere good for us on lymenet...like the opposition of steroid use...
Have you read what Trunzo said in his response?
quote Dr. Joseph Trunzo said: "As the principal investigator of this study, I want to clarify it is NOT a medical study. It's a study of a psychological intervention that may help people suffering from chronic lyme disease. It works in conjuction with your medical treatment and obtaining proper medical care is a necessary criterion for taking part in the study." In the paper it said not only chronic lyme but chronic illness." He does expressly indicate to continue medical treatment...not using CBT alone...no?
It's the psychological impact he is searching for and a possible treatment...CBT...For which as I have stated there are various forms as used by people on lymenet...
Funny when I called up for a consult on this there are many out there who have signed up or have been inquisitve about this study as I had to call again...to get a repsonse as he stated the reponses he has received have been overwhelming...
The unfortunate thing about this dam disease there isn't any dam structure not even within the lyme doctors themselves...no protocol...they freelance
example of this I have thyroid anitbodies which was run by a second lyme literate doc I went to see along with CPn and other things I have. How many people out there have seen more than onelyme doc? ...Your thoughts are appreciated but with me they hold no water and I will seek what I believe it will take to get me well....
it's like the steroid controversy....read find on line where steroids were necessary to cure vasculitis caused by lyme...the idea of the game is to get well and sometimes (maybe I am mis reading) it's just a negative approach....by us...justified ok more so...we seek answers because of this we have to be open minded, very open minded...LLMD's don't have hallo's..
Our threapy may come in the form of our beliefs also..is that part of CBT along with PMA sure is....so isn't anxiety meds which do not work for some of us
Maybe you should write the book on CLD because last I thing I will say in closing is that no one apparently has a total handle on this disease, we are our own advocates and at times many see more than one LLMD because we are a little bit more complicated and don't fit in the box.....created by some of these associated LLMD's....
Oh if you are on anxiety meds for this that sounds to be a part of coping according to Denise in the pro/jo article....so it you believe this throw them away...you're coping...coping means manage it's not an end all result as the girl in the post Denise wants you to believe....by the way she does imply she is "managing" in other ways
[ 04-19-2009, 02:04 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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