posted
Wanted to repeat some of this info in a separate post. I am very excited about the new DNA sequencing testing available from F lab.
Spoke at length to the lab director -- Jeremy -- about testing procedures.
I am an acoountant so have no scientific background,. But from my discussion with the lab I was very impressed with their work. I think they know what they are doing.
I had been under the impression that they cultured the blood samples, but that is incorrect. What they are doing is much more sophisticated.
The advanced stain test sounds very similar to the IGeneX fish test. They incubate the blood sample for 5 minutes with a florescent DNA stain and then label and store it. This is what they take a photo of.
Now for the radical new testing. If they visually see something in the blood then they now (since June 2012) can do DNA sequencing to identify the pathogens. There are separate tests for protozoa and bacteria -- think the protozoa test is $265 and not sure about the bacteria cost yet.
In this test they use universal amplification and widen the scope and look for more than just babesia or FL1953. This is all computer based.
Actually there is a separate DNA sequencing test available for babesia that costs $100.
And there is the DNA sequencing test for FL1953 -- the PCR test listed on the lab requisition forms. The lab director explained in detail that test to me. It involves 2 positive and 1 negative control and the test is even repeated if it comes back negative. I won't go into all the specifics about that test as many people are already somewhat familiar with this testing.
Since much of this testing is new IT IS NOT LISTED ON THE TEST REQUISITION FORMS.
But this is the info that people need to understand.
If you had a photo taken by them or had a blood smear done by someone else such as Clongen and they visually saw something but you could never get an I.D. on the pathogen now there is some hope that the new testing can actually identify all those strange things in your blood.
For example -- in hubby's F lab photo --
Maybe now we can find out what the coccobacilli (bacteria) really were -- waiting on that test to be done.
What visually looked like babesia may not really have been babesia but might be some other strange blood borne parasite.
What Dr F himself thought was FL1953 based on visual exam also turned out to be something else -- waiting for hubby's LLMD to talk to the doc to have a better understanding of what the 2 or 3 different blood borne parasites really were.
Hubby never had antibodies to babesia microti. He did have very elevated antibodies to babesia duncani -- 1:2056 in December, 2010. But they had come down. But he still had visual evidence of what we thought was babesia as seen by both Clongen and F lab. But all the PCR tests came back negative.
So now the new DNA sequencing has found some other things that I am eagerly waiting for more info on.
It is my understanding that the FL1953 pathogen as currently identified has only 1 strain. I was a little unclear as to whether the lab thinks there are actually multiple strains of that pathogen or not.
Anyway -- this gives me hope at least that now maybe people can really find out what their infections are and how to better treat them. If you don;t know what infections you have then you are just taking an educated guess as to treatment. The more info the better in my opinion.
If cost is an issue then treat the 3 basic infections -- lyme, babesia and bartonella -- as best you can. But if you are still sick and not getting better -- especially after years of treatment -- then maybe it is time to do additional testing.
But just repeating the usual testing for antibodies or doing another Western Blot doesn't give you any new info. Try doing a blood slide or having someone with experience look at your blood under a microscope. If something shows up then the next step would be doing the DNA sequencing testing now available from F lab.
When we did the Spirostat testing last April we were hoping they would find something. But they were doing only PCR testing for specific pathogens. What F lab does is start with what they actually find in your blood and then look for a DNA match. Their approach does not assume you must have some specific pathogen or strain of bacteria or protozoan. They are the only lab I know of that offers this type of testing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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poppy
Frequent Contributor (1K+ posts)
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posted
Thanks for the information.
The caveat that I would add is that when they are sequencing, they must compare it to known banked sequences to have an I.D. Not everything has been sequenced, so this will not identify those microbes.
Did you get the impression that they were keeping frozen samples of all the previous clients so that someone who had coccobacilli could ask for further testing on it?
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seekhelp
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posted
THanks Bea. This is very interesting. My question is what is the starting test one does at Fry to get this process going? A standard blood smear? Something different? This is the one thing I feel is important for me.
I am very, very interested in what they find from Steve's specimen.
Also, do they only focus on pathogenic organisms or all types?
How do we know the general public doesn't all have some different pathogens in their blood, even if healthy?
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posted
Poppy -- Not 100% sure, but I think they do keep stored frozen specimens from all patients who had the blood smear testing. But not sure for how long.
Maybe someone else should call the lab and ask that question -- I don't want them to think I am a pest for calling too much.
And yes, your other point is valid. They do compare the sequence results to what is recorded -- I am guessing they use GenBank. But as reported in hubby's test results it says if the match was 88% or whatever. So unless it is something totally new it should match up to a fairly high degree I would think.
Seek -- I am assuming they look at all recorded bacteria and protozoa. Everyone has good bacteria as we all know -- but I do not think the beneficial bacteria are supposed to be in your bloodstream. But I don't think there are any good protozoa found in humans.
I think it comes down to your immune system as to how it responds to pathogens. Not everyone gets the flu for instance.
But I also think there are some bacteria and protozoa that are only found in sick people.
Bea Seibert
Editing to add -- Reread hubby's test results. The babesia sequencing test does report the percentage of genes matched up. But the protozoa test only says what percentage of organisms found belonged to each different organism listed. So maybe they are looking for only exact matches, but still they are looking for things no other lab is looking for.
posted
This is pretty exciting!! I think the work that Fry lab does is top notch.
I happened upon a Fry Lab booth at a convention here last year and got to meet Jeremy. Imagine my surprise when I saw their booth!! My husband was playing music for the convention and I just went along to help.
Jeremy is very knowledgeable and that makes me have a lot of confidence in the lab. I believe he is in charge of the lab(?)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks Bea. This is interesting. Keep us posted.
My question or comment is - even if we do find out what the particular pathogen(s) may be, are there treatments for them? I agree it's good to know but what do we do to cure them?
I read about 100 pages of PJ Langhoff's book God Science. I had to put it down for a while. The scope of the potential of what has been released into the environment can have infinite variations. It's documented & compartmentalized...
She does an execllent job of researching & documenting everything that she could focus on. It's infinite & unbelievable. I'm not really sure what can be done if someone comes into contact with all of these potential pathogens.
Most doctors are so behind the eight ball on this. It's kind of hard to process all of this information & actually come to some sort of protocol.
This doesn't even include the damage from heavy metals, toxins in the environment, & EMFs, microwave, wi-fi, etc.
I just watched a video GiGi posted with Dr. K... He's saying that the SmartMeters, etc. are potentially the worse thing ever... Even if we work hard to get well - the exposure to various EMFs can kill us. Especially, people who have been ill or those who are sensitive.
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nefferdun
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This is very interesting and exciting information. Thanks for posting.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Lymedin2010
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posted
Great to hear, thanks for posting.
I too am looking forward as to what they find in your husband's blood.
It's a shame there are so many things floating in our blood and those in charge of modern day technology are simply oblivious & at times appear to lack any care.
Hopefully the tides are changing?
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Catgirl
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Fascinating--thanks for posting this Bea! You are so kind to help all of us with this.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Just talked to the F lab today. The bacteria sequencing test will cost $800 and it does not look like it will be paid by insurance as it is considered research and experimental.
I have requested the test anyway as it may still be covered under hubby's catastrophic insurance policy. Regardless, at this point I want to know whatever I can find out even if I have to pay for the test myself.
Will post more when I get the test results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I am still having a lot of trouble accepting that one bug (FL1953) can:
- cause significant arthritides; - cause so many other symptoms.
But I suppose Borrelia does that too. I'll keep my mind open, but I am still skeptical.
E.g., that "new" pricing seems awfully high. Spirostats or Pathogenius should be able to do better (even in diagnostic data) I'll check in the coming days or weeks.
-------------------- 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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Yes, the new test is expensive -- but it is not something that any other lab I know of does.
Hubby had the full Spirostat testing done twice in April 2012 -- both the lyme and babesia panels -- at a cost of $2500 I think it was. They did not find anything -- because all they look for is a specific set of organisms by PCR. PCR testing is great if it is positive. But there are lots of false negatives with that type of testing. They are only looking for exact DNA matches and would not be able to i.d. unknown organisms even if they found them as far as I know.
Never heard of the other lab you listed -- need to research that one.
I totally understand your skepticism regarding the FL1953 bug -- but actually that is not what the lab found in hubby -- at least I don't think so. Not 100% sure what the 2 or 3 blood borne parasites are yet -- they will only talk to a doc and not to me.
Hubby had multiple things show up on Clongen bloodslides over the years that no one was able to identify. Other patients have had the same or similar findings.
I personally think there are other tickborne or maybe mosquito borne pathogens that have not been identified in the medical literature. They may be pathogens commonly found in animals or they may be something totally new -- just do not know at this point.
My hope is that all the testing on hubby can help some other patients down the road. There are just so many unknowns with tickborne disease patients and the research is so far behind where it should be.
And the hospital lab could not even find any bacteria or blood borne parasites at all -- even though at the end they said Steve died from sepsis. Standard blood cultures as done in hospital labs miss many pathogens in my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kelmo
Frequent Contributor (1K+ posts)
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posted
Thank you, Bea, for your persistance and research. Your husband would be proud of you. I know you have tried many labs looking for many organisms.
We've been on this journey with Fry Labs. They are really committed to research. A lot of personal sacrifice.
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