posted
Spoke to Jeremy the lab director at the ILADS conference. Actually I went back and talked to him 3 or 4 times as I kept thinking of new questions.
For those who question the validity of the lab - the lab has had one paper accepted for publication. Should be out in the next 3 or 4 weeks. The lab will post this journal article or a link on their website as soon as it is published. They also have 3 other journal articles written and being submitted to journals.
I also spoke to one of the scientists from IGenX - did not get their name - was asking them about babesia testing - their comment about Fry Lab - "They know what they are doing."
I think I heard this from one of the presenters - not sure who - it is my understanding that the protozoa FL1953 actually has been found to have 8 different species.
I asked Jeremy how many of the specimens they test are positive for FL1953 - answer was probably 10 percent.
I asked Jeremy how many patients that have chronic illness they test end up with positive tests for parasites - answer was 95 percent. These are blood borne parasites and include FL1953, babesia and other unknown parasites like with hubby.
As for Steve's tests - I need to send the lab a letter from his LLMD who requested the test and they can rerun it using their new software - they may have more info on the unidentified unknown protozoa they found 2 years ago from blood drawn post mortem.
They can also test his brain that is currently at Columbia Presbyterian in New York.
Was also told that they can send more details on the bacteria testing that was done - just because the report I was sent said that it was negative does not mean no bacteria was found - just that it was below whatever cutoff threshold the lab had set.
If anyone else had the PCR testing for protozoa done in the early years (test first done in June 2012 I think) then it might be worth having them rerun the test results using the most up to date computer software.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Not clear on this re-testing. Are you saying they still have samples from long ago from us when we had testing previously. And that they can re-use those samples to look again?
Also, I am believing we can have other things that haven't been identified or treated correctly, because they are new, but the difficulty of getting rid of chronic lyme is still a problem. Makes you wonder what it would take to knock out these new things if we have already had babesia treatment and antibacterials for a long time.
Posts: 2888 | From USA | Registered: Mar 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Thanks Bea. Fascinating that they found 8 different species. I know I have at least one of them, possibly more. The lab told me it's best to be off abx a few weeks before blood draw (better chance of something showing up).
I hope they are able to identify something from Steve's brain. Everything you are doing is helping us, thank you!
-------------------- --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
Poppy - Yes the lab keeps all specimens. By law I think they are required to keep them for 7 years I think they said.
Anyway, they can retest those specimens, but they might not be viable depending on how long they had been stored.
What I am having done is simply to rerun the report against their new computer software - they are not retesting anything for me at this time. I don't know what the charge is for this, but I am willing to pay a reasonable amount to see if the new software can tell me anything new.
The lab said they find new things all the time - pathogens that have not previously shown up in other patients.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
This is interesting information. I just purchased a Fry test and found out that Fry has most recently (past month) stopped giving any information except normal or abnormal... at least to my son's doctor. Strange that Jeremy offered you MORE information when they are actually giving less information now.
They don't even give the numbers that some doctors used to be able to figure out which species were found. They also make no attempt to quantitate anything that's found either.
My son's doctor seemed disappointed, but understands that Fry's analyses are for research purposes only so they have to be careful.
Posts: 18 | From Maine | Registered: Dec 2013
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
He used to bring me in his office to see his latest pictures on his computer. He is holding them closer to the vest now.
Posts: 2903 | From AZ | Registered: Feb 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
The FDA has initiated a war against non-FDA approved tests, such as those that Fry Labs does. That may be one reason for Fry Labs not giving much info...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Are they still doing smears for Bartonella and babesia? Those are named, right? Why wouldn't more people use
Fry lab for Bartonella and Babesia testing if it's an actual blood smear pointing out these 2 co- infections?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
As more findings are reported, we'll receive more information. I know he had shown me all the different protozoans he had been finding when he was preparing for a Poland conference a year ago.
This will be a huge finding, and I agree he has to hold things close until proven and all information is finished. Thanks for the info Bea!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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The interesting information that I would get was from my previous LLMD from last year. She had direct contact with that Dr and others that had success or progress treating it. Unfortunately, my previous LLMD passed away late last year. She had a meeting doctors conference with that doctor and others that seemed to be having some success. The last I heard was to treat with anti-worming agents and then babesia meds plus herbs plus blood thinners and enzymes. I posted some stuff last year. I no longer have the information that I used to get. I do now still have a new top notch LLMD who is open to treating with anti-worming and anti-parasitics, etc. The previous methods mentioned above.
Posts: 722 | From CA | Registered: Dec 2011
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