posted
Just had an interesting phone conversation with SpiroStat Lab.
Hubby has submitted samples for both the Lyme and Babesia Panels. It will be a couple of weeks before the results are back. This lab only does PCR testing. But the PCR testing they do is cheaper than at other labs and seems to test for many more things than is available at other labs.
Spoke to Dr Snow the lab director. He says the lab does not do any antibody testing or blood slides. But he says their testing is very sensitive. A bloodslide uses 1 drop of blood. There are approximately 22 drops of blood per ml. According to him SpiroStat lab can detect something if there are as few as 10 organisms per ml of blood.
But then he told me something that really upsets me. Big Brother really is watching.
Per Dr Snow a healthy person may have between 30 and 50 different organisms in their blood � things such as good bacteria that are not pathogenic.
The lab matches up DNA of the known pathogens that are found in ticks, fleas, lice and other biting insects.
But this is the upsetting part. If they find something that is not on their list and is not in the GenBank sequence list THEY ARE NOT ALLOWED TO TELL THE PATIENT. U.S. LAWS SAY THEY CAN ONLY DISCLOSE WHAT HAS BEEN RCORDED IN THE MEDICAL LITERATURE IN OTHER WORDS.
They won�t tell the patient or their doctor that they have found a new unidentified pathogen because until it is listed in the GenBank sequence it has not been documented or peer reviewed I guess.
Per Dr Snow they have found many new pathogens that they are working on getting documented and verified but that costs lots of money and takes time.
So even if they find whatever is attacking hubby�s white blood cells or the dumb bell organism we will probably never know. I guess since Clongen lab is reporting results of a blood smear the laws are different and he can report what he sees even if he doesn�t know what it is.
So for patients who remain sick my advice remains the same as in the past � if you can afford it get a Clongen blood slide done or have a live blood analysis. Seeing is believing. Just knowing there is something really there can be very validating even if it doesn�t have a name.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
What this means is that if you have a new strain of babesia or ehrlichia or bartonella that has not already been sequenced then the lab will tell you that you do not have babesia or ehrlichia or bartonella.
That is just wrong in my opinion.
It is comparable to testing someone's blood and knowing they have cancer but not telling them because you do not know where the cancer is in their body.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, Bea.
I really admire your persistence.
Also very grateful to your many details posts.
The stipulations described are disgustingly alarming, actually. So sad. Still, thanks so much for the detail. We need to know this even if it makes no sense at all and is against my right as a human.
I wonder if the ACLU might be of help. Of course, that can take years to change an existing law.
I don't understand WHY this was enacted other than to put pennies in the back with potential future patents.
It just seems CRIMINAL, medically and regarding what I though was civil law.
We pay them to seek. They find. We paid for that view under the scope. It is our tissue. It belongs to us.
They should tell us all that is shown under the microscope. Photos, descriptions, explanations, comparisons and, most appropriately, anything unusual to them. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bea: "It is comparable to testing someone's blood and knowing they have cancer but not telling them because you do not know where the cancer is in their body" (end quote)
Actually, it seems perfectly fine with the medical powers for doctors to not tell patients about cancer.
Many doctors do not. Recently, there was an article (in the New York Times) about this and a shocking percentage of doctors reported that they do not believe in always disclosing such information to patients.
Of those, most felt the patients either could not handle the bad news &/or treatment would cost too much, be out of reach for them - or potentially not worth the side-effects - or not much chance of helping.
They felt the decision to tell or not was their right. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you for this information, Bea. It is horribly scary to think that we are in control of our lives, when it is quite the opposite- medicine and government is NOT a good mix.
Posts: 3975 | From usa | Registered: Aug 2007
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quote: But this is the upsetting part. If they find something that is not on their list and is not in the GenBank sequence list THEY ARE NOT ALLOWED TO TELL THE PATIENT. U.S. LAWS SAY THEY CAN ONLY DISCLOSE WHAT HAS BEEN RCORDED IN THE MEDICAL LITERATURE IN OTHER WORDS.
Same thing at Fry Lab. The ordering Dr has to tell them that he wants to see pics of anything found, even if the lab can't identify it for sure.
Actually Bea, those bugs are NOT attacking the WBC's. The WBC's are collecting what they are able to catch in order to destroy them.
Next time you go in for an analysis, have hubby eat a taco or burger 45 min to 1 hr before the appointment. The fat will bring out hoards of those bugs so you can get an idea of just how infested he really is. I know they want the person to fast for a few hrs, but forget about that if you want to see what's really going on in his blood. Then maybe you will change your mind about getting him tested for the Proto bug.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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posted
Bea, is there any way you can find out which Federal Statute the lab is referring to? I'd like to look it up. I'm wondering if it is new, and whether this might be connected to Obamacare or whether this is a law that has been in existence awhile.
Meanwhile, I'll try and do a search to see what I can find out. I'd like to read the language.
This sounds so alarming. Then again, it seems to be "par for the course" with the lack of overall quality of health care services lately.
Posts: 503 | From Maryland | Registered: Oct 2007
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I really don't know what to think anymore. Hubby's bloodwork so far is not telling us much of anything helpful. Hubby is back to running daily fevers of 99 to 100.5
Hubby still has elevated IgG antibodies to HGA -- they have gone up and down since first showing up last summer. Currently IgG antibodies to ehrlichia chaffenesis are negative but they have also gone up and down since showing up last summer.
And to complicate matters hubby did get a new tick bite from what we think is a dog tick about 3 weeks ago.
Fuzzyslippers,
Not sure yet if it is a federal law or state law regarding what labs are allowed to tell docs and patients. Unfortunately SpiroStat does not do pictures so if they find something unknown the patient and doc have no way to know that.
------------------------------------------------
Hubby's LLMD feels like he has multiple things going on -- probably babesia and ehrlichia/anaplasma and lyme of course. Adding back multiple meds is helping stabilize symptoms but the doxy and levaquin which stopped the fevers last summer does not seem to be working this time. And the malarone and sida acuta seem to be helping as well. Adding back flagyl also seems to be helping. Next step will be to add back ivermectin.
I need to do lots more research in the next couple of weeks before hubby's next LLMD appointment to see if we can come up with a new approach.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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