posted
For those who have asked I am posting this info here so I won't have to keep answering e-mails.
This is the info on the testing hubby has had done at Clongen. Results are not complete at this time. ------------------------------------------------ An M.D. needs to request the test.
Lab requires payment up front -- takes credit cards. Will provide necessary paperwork for you to file your own insurance. Insurance should pay some on tests, but no idea how much at this point.
Link to the test requisition form -- it includes prices. This is a PDF file and may take a few minutes to load. You can complete the form online and print it out or just print out the blank form and fill that in.
The testing for the mystery bug is not listed on the order form. Where it says "Create your own panel" just write in -- Blood smear (cost is $150). And then if you want the bugs to be identified also write in -- 16S DNA Sequencing.
The lab is supposed to call after they do the blood slide to confirm that you want them to continue with the DNA testing -- prices we were quoted were $365 to identify one pathogen or $900 to identify multiple pathogens. We have not gotten the call yet to say if multiple pathogens were found on hubby's blood slides.
I would expect a call within a week of the lab getting the sample and then maybe a week later to say if multiple pathogens were found and then hopefully the testing would be completed from start to finish within 3 weeks.
The lab does NOT provide pictures of the blood slides. Dr Kilani who is the head of the lab does all blood smears personally. He said the $150 covers the cost of 4 blood slides -- I forgot to ask him if he used 4 different stains or not. Dr K is very accessible and the secretary Amy is very helpful as well.
The lab has not charged us yet for the tests. Hubby had his blood drawn on 11/24. We actually went to the lab and Dr K drew his blood himself. I think the lab is waiting until testing is complete to charge us or they may do a partial charge when they call to ask about the DNA testing -- not sure exactly.
The only other test hubby had done was Mycoplasma species by PCR -- cost of $119. Results not available until LLMD appointment.
By law in Maryland the lab cannot send test results directly to patients. They do obviously have to call patients to verify that they have the money to continue with testing if the bloodslide is positive and if the 16S DNA sequencing finds multiple pathogens.
Bea Seibert
Hope this explains everything. If you have additional questions, please post to this thread rather than by pm.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
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Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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DebAz
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Hi There. I have an appt with DR F on the 15th. He told me at my last appt the name he was going to name the new bug and why.. Silly me did not write it down and I wish I did and will ask him again this time.
SO watch for me on the 15th .. I see it has become a big question and if he told me I am sure it is ok for me to tell everyone.. I will ask him about this too and let him know many are on pins and needles wanting to hear more.
posted
PS I have the pictures from the lab and i am sure everyones is different but I have made a post before to share the pics and noone responded. I think it would be interesting to view.. But I understand if that is not something that people want to post too..
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Wow, Bea, this is very nice of you to do this. Good job!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Since everyone had so many questions I called Clongen today to ask a few more questions.
According to Dr K at the lab --
The following pathogens should theoretically be visible on a bloodslide (as with any test there are limitations to the testing) --
babesia, malaria, bartonella, tularemia and the "mystery bug"
The following pathogens would either be too small or unlikely to be seen on a bloodslide --
Lyme, mycoplasma, rickettsia (includes Rocky Mtn Spotted Fever), Q fever, ehrlichia/anaplasma (could be mistaken for granules in the white blood cells)
Those pathogens not normally visible on a blood smear need to be tested by another method -- either antibody tests or PCR tests.
------------------------------------------------
Now, for his comments on the "mystery bug".
His lab will be unable to suggest antibiotic therapy -- he said that knowing the pathogen should be useful for this, but I don't think he really is aware of just how many things have failed for so many people.
Also, to test for antibiotic susceptibility the pathogen must be able to be cultured. His lab has been unable to do that so far. Not really sure how hard they have tried though, because that is not really where their expertise is.
The fact that he can't culture the bug makes me wonder if Clongen Lab and Fry Lab have found the same pathogen or not? I read somewhere that Fry Lab said the pathogen required arginine for growth. The only way he could know that is if he has in fact cultured the pathogen.
Also asked and Clongen could not say whether or not the mystery bug had a biofilm. Got the impression this is something the lab will be unable to determine.
The final question I asked was if the bug was attached to the red blood cells. Was told that it is not and that it is freely moving around.
Dr K is taking a week's vacation -- said he had literally been in the lab for 24 hours yesterday working flat out. Think he is trying to hire additional lab personnel.
I will probably not post again until after hubby's 12/16 LLMD appointment as I don't think there will be anything new to report.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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Bea,
So you are saying if Clongen finds ANYTHING unusual on the blood slide all they will do is tell you an abnormality was found unless you pay much more? So if Babesia and Bartonella were found, it would cost me $900+ to know this?
Or do you mean, they would be able to tell me what specific strain of Babs / Bart it is? $150 is not bad for a blood smear, but I want to know what I'm getting.
Can you explain a bit more about the Myco PCR test too? Does it look for multiple strains? Is there a purpose if you have a negative Myco IgM Ab test?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Have not seen hubby's lab report yet. Do know Clongen faxed something to the doc based on the bloodslide.
I am assuming it would be similar to the Fry report -- would say something like found pathogen (with a brief description such as size or shape) and then probably list the possibilities as to what they thought it could be.
Obviously some things look alike under the microscope.
If there is only one pathogen -- the cost to identify it by both genus and species is $365 I think. This charge has not come through on our credit card as the test is not yet complete.
Actually we do not know if they found just one pathogen or more than one on hubby's slide. If there were multiple pathogens then the cost to identify all of them would be $900 instead of the $365 for one.
By genus and species I mean bartonella quintana or babesia duncani for example.
As to the mycoplasma test hubby had done -- don't have the results of that yet either. It was a PCR test for the genus only -- there are 20 species included. Don't have a list of those yet either.
The test will be either positive or negative. If you wanted to know exactly which of the 20 species you had then you could either do another PCR test -- I think they have a couple for the most common strains that cost $119 each. You would just be guessing which strain you might have.
Or they could do the DNA sequencing based on the first test -- not sure exactly how much more it would cost to identify exactly which species they found. Might be cheaper than starting with a slide because they have already narrowed it to the 20 species which are included on the test.
Unfortunately with a positive IgM for mycoplasma I don't think you can say yes or no definitely whether it is a current infection. With a PCR test they are looking for DNA from the actual pathogen. If it is positive then you are assumed to have an active infection. However, most PCR tests have high false negative rates.
Hope this explanation makes sense.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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So uh, Bea, I know this thread has been dead for ages but whatever happened to the mystery bug situation? Registered just so I can ask this, esp. since I've talked to Dr. K at Clongen myself earlier
Also how is your hubby now? What treatments worked/failed?
Cheers!
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TF
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slay, Bea's husband passed away in the hospital evidently due to babesiosis and other tick-borne illnesses.
It has been a few years now.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Oh no, I wasn't expecting that at all. I'm terribly sorry for her loss...
Trying to read through the available post history but it's only showing the 50 most recently started threads which includes the lawsuit but not, for instance, the hospitalization or anything prior. Guess that's just a limitation of the message board...
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TF
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Yes, it is a wrongful death lawsuit she wants to file against the hospital since they refused to investigate his babs or treat it. This eventually led to his death. See this thread:
Just click on "search" near the top of the screen.
Once her hubby died, Bea moved on to other things including the lawsuit. So, it is best to see what others have posted on this topic recently.
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