posted
Good luck. You are going to need it. They might possibly diagnose a case now and then but will only treat with short course, whether or not that stops the symptoms. Then they will kick you out the door.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Johns Hopkins is an active player in the Lyme coverup--forget them.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, I'm with the others who say forget it, you won't find quality care there for tick-borne disease (TBD).
I recently researched this as there is a very complex and new/rare ear surgery that I may need that only JH will do (the best job).
However, I wanted to know that my neuro -yme would be considered during and after surgery - especially since steroids would be given - or if there were an emergency or set back with lyme.
I do not feel comfortable pursuing surgery knowing what I found out about the overall stance by most doctors at JH regarding lyme - chronic neuroborreliosis - that it does not exist in their eye. Or, if so, in the very narrow definition of the CDC and it's still no big deal.
Toss the co-infections in (Cpn, HHV-6, 2 other TBD) and my estimation is they would not even be able to grasp the precautions necessary to ensure my safety for a few days (as steroids can make infections blossom; stress can bring dormant infections to life).
So, as for actually treating and TBD (tick-borne disease), I found nothing that says anyone there could possibly do that beyond the deceptive quick fix for a presenting bulls eye.
And, considering that currently, a LLMD from Maryland is under fire by the IDSA's bullies, it's highly unlikely anyone from JH will go against the IDSA - they are part of the IDSA higher ups - part of the problem.
Check the names of the IDSA "experts" and check the places some of them come from: JH is right up there.
Then, go and read some of the articles. They do not have the necessary knowledge and, worse, pose serious errors in their work.
Going a step further, the literature their web site is clear. Lyme, they say, is no big deal. It certainly does not involve fatigue or pain, they say.
True, my surgeon might grasp the true nature of neurolyme, but a patient needs to know that everyone who will be tending to them is on board. If something were to happen to one lone doctor, would the residents follow a "secret" plan when the administration of the hospital has a loud voice against it?
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[ 02-05-2009, 01:36 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Many errors in this presentation - especially the fact that they still use the unreliable ELISA and their thinking that results are "more likely to be false positive than it is to be true positive"
By their relying on the CDC criteria, patients don't have a chance. And, beyond lyme, it seems they've not even heard of the other TBD (tick-borne diseases) that demand equal consideration.
The last 2 paragrafs (I don't know how to spell that right now) - well, they disregard a great deal. Right there, they have dismissed most chronic lyme patients.
The term "used with caution" is code for "toss them out the door" and "do not bother with these kinds of patients"
"Nonspecific symptoms" are really are put-down as if they just don't count.
They really could not say it more clearly. "Anyone who even thinks they may have lyme: stay away - we won't believe you - we won't be real doctors for you."
Lyme Disease Diagnosis by Brian Schwartz, M.D., M.S.
How is Lyme disease diagnosed?
Excerpts:
. . .
Classical later presentations such as unilateral facial palsy, heart block, or frank monoarticular arthritis of the knee, should motivate the physician to obtain appropriate diagnostic tests for Lyme disease and to exclude other causes.
Diagnosis of Lyme disease is aided by serologic testing, which should include antibody testing by ELISA, and if positive, follow-up with Western blot testing for both immunoglobulin G and M antibodies.
By 6-8 weeks of infection, most patients will have an appropriate antibody response.
The sensitivity of serologic testing is approximately 50% at the erythema migrans stage, but increases to over 90% by the later stages of the disease.
Serologic testing is thus not very helpful in a patient with classic erythema migrans, who will be treated for Lyme disease regardless of the serologic test result.
The specificity of serologic testing is approximately 90-95% for all stages of the disease.
. . .
As recommended by the Centers for Disease Control, a positive ELISA test result must be followed by Western blot testing.
The usual criterion for a positive Western blot for IgM is at least two bands corresponding to proteins of specific molecular weights (two of the following three: 23, 39, or 41 kDa).
For Western blot testing for IgG, the usual criterion is five bands corresponding to proteins of specific molecular weights (five of the following ten: 18, 23, 28, 30, 39, 41, 45, 58, 66, or 93 kDa).
. . .
Other diagnostic testing modalities are available. These include polymerase chain reaction (PCR) testing of blood, skin biopsy samples, cerebrospinal fluid, joint fluid, or urine. Some laboratories are selling a Lyme urinary antigen test.
At this time, these tests must all be considered to be research tools and are generally of limited clinical utility. PCR testing of blood or urine seems to have no clinical utility and is not recommended.
. . .
In the patient with numerous nonspecific symptoms that may or may not be compatible with Lyme disease, the clinician must understand that if the pretest probability of Lyme disease is low, a positive serologic test result is more likely to be false positive than it is to be true positive.
Lyme disease serologic testing should be used with caution in patients complaining solely of nonspecific symptoms such as, for example, chronic fatigue, headaches, or diffuse musculoskeletal pain.
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- Full page at link above.
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[ 02-05-2009, 12:51 PM: Message edited by: Keebler ]
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