posted
If your doctor is quoting IDSA guidelines nonsense at you, you could point him to this highly respected medical textbook published this year in its 6th edition. It states:
"Lyme disease is a chronic systemic infection..."
"Neurologic manifestations may begin months to years after the disease begins.They range from intermittent tingling paresthesias without demonstrable neurologic deficits to slowly progressive encephalomyelitis, transverse myelitis, organic brain syndromes and dementia."
Notice the phrase "without demonstrable neurologic deficits"- this might be useful to point out to a physician who believes there can be no serious disease process underway until objective neurologic deficits are seen.
Source of quotes above: Rubin's Pathology: Clinicopathologic Foundations of Medicine edited by Raphael Rubin, David S. Strayer, Emanuel Rubin Lippincott Williams & Wilkins, 1 Apr 2011 p378
This textbook has received very favourable reviews even in the pillars of Establishment medicine:
Journal of the American Medical Association (JAMA), 15-SEP-04, Volume 292, Issue 11, Syed A. Hoda, MD and Rana S. Hoda, MD -- "The three main challenges in writing a textbook about introductory general and systemic pathology are to inspire the physicians of the future, demonstrate relevance to modern medicine, and keep the covers of the book not too distant. The latest incarnation of Pathology, rechristened Rubin's Pathology: Clinicopathologic Foundations of Medicine, seems to have met each of these challenges with substantial success... "
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
Good find. I met with a neurologist wanting to get tested for CCVSI and he said there was a lot of "contraversy around chronic lyme" and said that some doctors do not believe it exists (I am sure that included him).
He wanted me to take a series of psychological tests and perhaps try some meds. Welcome to the psychotopic world!
He did prescribe and MRI of my brain so I may do that.
Glad you uncovered this.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Thank you, What a great find.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Elena,
Thanks so much.
Matt,
If you get an MRI, it is best ORDERED and READ by a LL doctor. Most doctors who order may not know exactly how to order certain aspects of the test - but mostly, most neurologists or radiologists who read an MRI are not educated about the way lyme can look on the image and dismiss it as "artifact" -
- "artifact" is the dismissal on various kinds of tests where there is information they do not understand, garbled or just not what might be expected
- it can also be just "trashed signals" as they explain, a mixed signal, etc. But, my guess is that a lot is explained away as "artifact" when it may not be at all.
And, you may not NEED an MRI. It's very hard on the ears. I think, even with muffs and ear plugs that it can damage hearing, but that may not show up for a few years down the road.
Too many Americans are going deaf and few seem very concerned with that. Too many have tinnitus can can be lifelong torture.
Plugs and muffs can't possibly protect the ears as much as needed because sound, vibration travel through bone - and through your nose, too.
Ask your LLMD about this FIRST, as your symptoms may be enough for him for the spectrum of diagnostics. There is so much our bodies tell us that no machine can, anyway.
And be sure that IF you go ahead, where ever you have this done they HAVE in their hands when you ask over the phone about SPECIAL EAR MUFFS to help protect your ears. Ear plugs are not enough alone. I suggest wearing both.
Of course, you would still have to hear the technician through there MRI speaker but that is still possible even with plugs and muffs.
Ears are much more susceptible to damage from even normal sounds when on antibiotics and some other kinds of Rx. Even for months, afterward. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Has anyone tried Brain SPECT?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
My ex-father in law died of dementia. His wife put him in a va home where I'm sure he did not get proper treatment. This is no surprise to me.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- amom,
I had a brain SPECT done about 1995 when my working dx was just Chronic Fatigue syndrome.
MUCH quieter (nearly silent) and safer for the ears.
The neurologist who did this test for me did not know about lyme and this was about a year before I had been dx with lyme and two other tick borne infections.
I doubt that he even would have known what to look for - and, in fact, I had read that there were some things that should have been done before the spect that were not.
I never saw the report, he would not let me see it. He dismissed me as a patient at that time.
One advantage of a SPECT is that it can show exercise intolerance as in if the brain is not getting enough circulation.
The Nightingale foundation of Canada had a textbook segment of scans from CFS patients who had exercised not at all before; 12 hours prior and 48 hours prior. The effects of exercise and
hypoperfusion was remarkable. This same thing has been reported by Fallon in SPECTS of lyme patients (though not with specific attention to exercise pre-test).
Still, for me, the test was a waste of time and money. It told me nothing I did not already know.
Now, had I had doctor who knew what they are doing - or if I could even find the past SPECT - it might be helpful.
My test was destroyed. I tried to obtain copies and there was no trace of my even having had the SPECT performed. Very odd.
But that doctor did not believe anything that was so wrong with my body. Not sure why the test was destroyed, though.
If you want a SPECT done, be sure to search out the work of Brian Fallon at Columbia's Lyme Research Center. He is not a LLMD who treats patients but a researcher.
If looking only for signs of hypoperfusion, though, that sort of just goes with having lyme and gets better with treatment.
There are other things to look for with a SPECT, though. I think the PET scans are a bit more entailed and more expensive. Or the other way around. They are similar, though. Not sure about insurance coverage.
Just be sure that the prescribing doctor is ILADS-educated and lyme literate so that the proper parameters are used . . . as well as the doctor who will be interpreting the test and writing the report.
The infusion of whatever agent used in the bloodstream did not cause me any problems that I was aware of at that time.
However, I would not do this again unless there was very specific information that only that test could provide - and someone who could work with that.
No point of injecting anything into the body unless absolutely necessary. Symptoms should be taken seriously enough that invasive methods would be minimal.
Kidney and liver support following any kind of test infusion is a good idea. I think I probably even took carrot and beet juice with me to drink down immediately afterward. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Cool, I hope ALL the textbooks will follow suit!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
So the 12 lesions small on the white matter on my brain aren't glitches from the machine like the hospital said. I'm being sarcastic. Im in hell. Heterogeneous hypo perfusion mild to moderate in 2005 and 2006 in Columbia. Big deal, tests show, but where am I now?
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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