posted
John Halperin is not a very good source for accurate information about lyme disease. He is an IDSA clone.
He says current diagnostic procedures are very good. Baloney.
He says neurological lyme is rare, when it is really as common as arthritis, etc.
With this kind of focus for research in the future, the lyme obituaries thread on lymenet will continue to grow.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Had to laugh when I got to the sentence, "Current diagnostic tools for neuroborreliosis are excellent."
Fallon actually has some reasonable ideas but when they talk about how to choose their study populations they leave out the very people who need help the most -- the ones who do not have definitive proof of their lyme and coinfections.
According to Dr H you are not anxious or depressed anymore -- you have just trained your brain to think you are sick. With that attitude can you really trust the research to be valid?
It is so ironic that 10 years ago Mt Sinai in New York was unable to diagnose hubby with lyme and tickborne diseases. It took us several weeks to find out that their EEG was unreadable due to artifact (his tremors were so bad they could not interpret the EEG)-- but of course the movement specialist neurologist did not hesitate to send hubby to a psychiatrist. They first lied and told us the EEG was normal and only later when we requested a copy did we find out otherwise.
Even more amazing the EEG tech came out of the room and was all worried and upset and told me they might have to admit hubby to the hospital. I asked why and they said he was shaking so hard -- of course I said well that is why we are here doing this test -- noone knows what is wrong with him.
At that time hubby had only been sick about 2 months and I did not know anything about lyme disease and tickborne illnesses. Just one of the many missed opportunties for early diagnosis and treatment. This is probably one of the reasons I do not trust any large university hospital.
posted
Amazing that the tech was worried about the EEG, but then you were lied to about the result!!!
It still stuns me that medical people can be such liars.
Posts: 8430 | From Not available | Registered: Oct 2000
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I want to vomit when I read the follwing by Dr. Halperin:
" Recovery seems to correlate best with patients� emotional resilience (Am. J. Med. 2009;122:843-50) and only inconsistently with psychiatric comorbidities such as depression or anxiety."
What the hell does that even mean??? I thought I would let everyone on this board who has been suffering for years know that if they just had a positive enough attitude they could immediately get well...What B.S.!!!! So many of us had hard-charging, athletic, highly-successful lives before this disease struck us....Whether or not it's ongoing infection or autoimmune or immune dysfunction or genetic predisposition....the suffering is CLEARLY REAL and to demean that by suggesting "our heads" are keeping us ill is so disgusting......
Thank goodness they, at least, included Dr. Fallon's research/thoughts, which validate patients suffering post-treatment is VERY REAL....
I have witnessed for years on this board the strength, determination, and courage so many have set forth in battling their severe pain and cognitive dysfunction...Dr. Halperin should be ashamed for quoting 1 study as "the gospel"...how lazy....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Oh, I also wanted to mention another 'FLAW' in Dr. Halperin's logic....the study he refers to is one in which the group of patients perceived themselves to have 'chronic lyme disease' but apparently didn't have the objective criteria to substantiate it......
In this study apparently these people's emotional states were strongly tied to their perceived pain levels....
Dr. Halperin seems to suggest that Post-lyme syndrome patients recovery strongly correlates with patient's emotional resilience and quotes this study as substantiation..... Here's a news flash, Dr. Halperin, as stated by Dr. Fallon, Post-lyme syndrome patients HAVE A DOCUMENTED HISTORY/OBJECTIVE CRITERIA FOR LYME DISEASE AND ARE NOT, I REPEAT, ARE NOT the same class of subjects in the study which you quoted....
I'm sure there are people who incorrectly believe they have had lyme disease...Just as I'm sure there are people who falsely believe they have a form of MS or RA..etc....But to say people with clearly documented cases of lyme who are suffering post-treatment are in the same class as those who incorrectly believe they had lyme is so patently ridiculous!!!
How can we get ahead in the face of such profound ignorance!!!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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Camp Other
Unregistered
posted
Bugg,
Thank you very much for posting the link. Really, it seems like so much of what I read out there on Lyme disease research - if one person like John Ioannidis had to characterize it - makes it look like the field has multiple personality disorder.
You said,
"Dr. Halperin seems to suggest that Post-lyme syndrome patients recovery strongly correlates with patient's emotional resilience and quotes this study as substantiation..... Here's a news flash, Dr. Halperin, as stated by Dr. Fallon, Post-lyme syndrome patients HAVE A DOCUMENTED HISTORY/OBJECTIVE CRITERIA FOR LYME DISEASE AND ARE NOT, I REPEAT, ARE NOT the same class of subjects in the study which you quoted..."
Agreed. This is a huge problem, especially when the IDSA (along with an article in the NEJM) are lumping in patients with objective manifestations of late stage Lyme and post-Lyme patients and patients with subjective symptoms unrelated to Lyme disease and people with MS ALL UNDER THE IDSA's CURRENT DEFINITION OF CHRONIC LYME DISEASE.
Which is not a scientifically sound definition of anything. Scientific language requires specificity; words mean something.
And I agree, some people may think they have Lyme disease and are wrong. We cannot all be right, though I support everyone in finding out what is making them ill and do not think everyone has hypochondria or another mental illness as the cause of their condition. It is short-sighted if physicians look for a psychiatric diagnosis first before ruling out another cause.
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Bugg
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posted
Camp Other, you said:
And I agree, some people may think they have Lyme disease and are wrong. We cannot all be right, though I support everyone in finding out what is making them ill and do not think everyone has hypochondria or another mental illness as the cause of their condition. It is short-sighted if physicians look for a psychiatric diagnosis first before ruling out another cause."
And I say: Well-said. AMEN!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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RDaywillcome
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posted
I second that onbam! Posts: 1738 | From over the rainbow | Registered: Jul 2009
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JRWagner
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posted
Jerk that he is....
I would love to debate this fool on whether or not I have Neuro-Lyme...PLUS! My SPECT scan shows SEVERE HYPO PERFUSION, and my brain MRI shows new lesions...indicative of Lyme mediated auto-immune, or MS. I also have Oligoclonal antibodies in my spinal fluid...also a marker for MS. My MS Dr. is the Head of Research at Cornell Presb. and he is very receptive to the idea of Lyme being one of many possible causes of MS.
I am now taking Copaxone IN ADDITION to my ABX regimen.
For those of you who do not know my history:
Bitten in 1994,,,diagnosed immediately...three weeks, then 6 of doxy...zilch. Followed by numerous doses of IV Rocephin, Claforan, and Mephron for Babesia.
Nothing worked...including alternative therapies.
My head is in a constant fog.
Wonder what this moron would say to me...I know he had better not say it to my face, because I have absolutely no patience left for these self-serving idiots.
Fallon needs to be a lot stronger and be more of a patient advocate than he has in the past if he is going to help us.
ARRRRUUUUGGGHHHH!!!
Peace, Love, and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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posted
" Recovery seems to correlate best with patients� emotional resilience (Am. J. Med. 2009;122:843-50) and only inconsistently with psychiatric comorbidities such as depression or anxiety."
I am one of the toughest bastards I know. I was rendered a blathering baby plagued by depression and anxiety.
I think this doc needs to experience first hand what lyme and co's is REALLY like.
Posts: 342 | From northern california | Registered: Dec 2010
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posted
Substitute other diseases, like cancer, TB, AIDS, etc in his idiotic statement about emotional resilence.....see if it makes any sense. People who say things like this should have their medical license revoked and spend a month in a pillory. How can medical schools turn out imbeciles such as Halperin?
Posts: 8430 | From Not available | Registered: Oct 2000
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onbam
Unregistered
posted
Fallon's capitulating in order to get funding. It's proven that Lyme is chronic--Halperin himself proved it--but if Fallon ever says this, they'll pull the plug on his program.
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Have you ever noticed that it's fine for physicians like Dr. Halperin to quote non-peer-reviewed studies as evidence to dismiss our symptoms but then attack lyme studies that support our position because they aren't 'peer-reviewed.' Can't have it both ways!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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sparkle7
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Member # 10397
posted
You guys are great! Thank you...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
yeah, its called "eminemence" based medicine.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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