Topic: Oh gosh, you guys must read what's posted on the local LD Support Site!!!
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I'm going to copy & paste it here for you. You 've got to see this, maybe can add some input. It's an employee of the state health department who stumbled across a posting on this Lyme activism site.
"6 Responses to ``My Letter to Representatives In ***** State''
Reply *****Dianna.
"..................... Also, an adult female that had received positive lyme tests from an out of state lab met with the head of Infectious Disease at ***MS, after reviewing the Lab results from a different lab he told her, ``YOU DO NOT HAVE LYME...this lab company must not be reputable''...when she ask him to do his own test at ***MS he said NO, *****state has no Lyme''. Our Doctor in M***** said
Lyme isn't the correct name we should be using, we should be calling it by it's bacteria name borrelliosis(not sure of spelling). He said *****s bacteria is the same form of ``lyme'' but is shaped a little different but has all the same symptoms & can have chronic symptoms like Lyme, he likes to call it ``master's or starry disease'' instead of Lyme. Whatever we want to call it, it can be a crippling or fatal disease if left untreated.
Reply ****** Wilson March 28, 2012 at 11:17 AM ****** Department of Health sends Lyme disease specimens TO the CDC. How could they not be notified? You can't be sure of the diagnosis unless you get a positive for the specific Lyme test. But, ******* has multiple tick borne diseases which are ALL treated with the same antibiotics as are used for Lyme. Anyone with clinical symptoms of any tickborne disease are treated with the same antibiotics.
Reply Tricky Ticky March 28, 2012 at 2:37 PM Mr. Wilson: When you say the ** state health dept sends ``Lyme disease Specimens'' to the CDC, exactly what do you mean? The tick itself? Or the paper saying the LD test is `positive'? What I am saying here is that the medical clinicians are not sending in the proper documentation (positive test results) to the state health department when they get a positive result. I've been informed by individuals who said they reported their cases to ** dept of health. I instructed them to make sure their doctors send the positive test results to ** DH.
In order for the verified case to be counted as ``confirmed'' with the CDC, it must be a positive test according to their ``surveillance criteria'', which the test was originally created for, NOT for diagnosis purposes. Clinicians aren't informed of that, they treat it like it's the only marker for the disease, when it's not. The CDC states that Borrelia/Lyme is a Clinical Diagnosis. The current testing procedures for borreliosis is flawed and inaccurate.
I have spoken to individuals who have the disease and still tested negative.....many, including myself. There are many many co-infections besides just Lyme/borreliosis but everyone calls it ``Lyme''. Our ****** strain is referred to as Masters Disease or STARI. The bacteria is not exactly like the NE type, but a spirochete nonetheless.
I've learned of some Md's who don't treat tick borne infections with the same antibiotic. These little bacteria devils are smart and wicked.....so maybe it takes a different ABX with some. I'm no microbiologist, for sure.
Regardless, prevention is the key and warning people that tick borne diseases, ALL of them, are dangerous is the focus of many support groups. Nobody wants to end up sick for months.
Reply ******* Wilson March 28, 2012 at 6:55 PM I'll explain. You can't do a Lyme disease test in a Dr.'s office. If you've got the symptoms of Lyme, RMSF, Tularemia, Eherlichia or STARI the Dr. will treat it with an antibiotic of a class that will kill any those organisms. But, before you can positively say which organism you've got, you have to do the specific test. For Lyme disease you send a serum sample to the CDC and they test it. That's how they know that person in ******* has Lyme. I can assure you that nobody on Earth can tell you which tick-borne disease you have unless they do the specific test with the blood serum. But the Dr. (if he or she is competent) is not going to wait for a test result. If you have fever, headache, nausea, rash or no rash that started with a tick bite, he or she will prescribe an antibiotic of that type that will treat that infection.
But don't tell me you know somebody with Lyme that tested negative. Nobody, you me or anyone else knows that. In conclusion, if you had a tick bite and you got sick, call a doctor, ask them if they're familiar with tick-borne disease. If they are, go see them.
Tricky Tickey March 28, 2012 at 10:47 PM Mr. Wilson, You are so right, if a person has all the symptoms of any tick-borne disease a competent doctor should immediately prescribe the appropriate antibiotic at the onset of symptoms not wait for a test result. I wish more docs would do that, but unfortunately, (especially if the patient doesn't recall a tick bite or have the rash just symptoms), a tick borne infection is not even considered & it goes undiagnosed, sometimes for months thinking it's something else. By that time, the patient has worsened and takes longer to get well.
No doctor( that I know of) has ever sent a serum sample directly to the CDC for testing. I actually wish they would. Doctors I'm familiar with use LabCorp or Quest to perform the ELISA or the Western Blot. Or if it's a specially trained ILADS doctor, they send the blood sample to a special lab in CA to perform the WB or tests for Babesia, Bartonella, etc.
I'm glad you informed me of that procedure. Why aren't doctors sending blood samples to the CDC if this is protocol, I wonder?
You've given some good information here. With all due respect, I will share with you that there are patients who have presented with the bulls eye rash and test negative on their Western blots. It happens. Or some other rash. Mine was a round, red bump on my right arm that appeared 1 month after the tick bites, right after I started feeling so tired and strange. Nobody recognized it as associated with the tick bites. Maybe it was, maybe it wasn't. There is no way to know for sure.
I appreciate your advice here: '' In conclusion, if you had a tick bite and you got sick, call a doctor, ask them if they're familiar with tick-borne disease. If they are, go see them.'' I just wish more MD's could give us a ``yes'' answer to that.
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-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Energy limits have me responding to only one small part.
This is of concern, the way it's worded:
" . . . if you had a tick bite and you got sick, call a doctor, ask them if they're familiar with tick-borne disease. If they are, go see them.'' (end quote).
IDSA ID doctors ALL say "they're familiar with tick-borne disease". But they are not.
Someone needs to tell them to see ILADS educated doctors, or at least one that is not bound to the IDSA dangerous dogma.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Exactly why the reply to that part was
"..... I just wish more MD's could give us a ``yes'' answer to that..."
This guy works in another section of that states health department. I don't think he knows doodly-squat. I mean, sending it to CDC? Who the heck does that?
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've been told "yes (they know about lyme or treat it)" by several doctors, some ID doctors. But, the reality is they do not. Once into their offices, I was often dismissed.
Their "yes" is a "no" but the general public has no way to know that. It is very sad, indeed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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