feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Kudos to Melanie AND to Hiker53.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Cold Feet: Ok, just to clarify a few things:
- Who is "we?" Is this an influence campaign?
- Are you questioning the lab's credentials, which are really a question for the CLIA folks? See http://www.cms.hhs.gov/clia/ The goverment and the lab have done their due diligence on QA procedures we can't even begin to understand. Drill down into the link and sub-links.
- This is not a PCR issue, so why bring this up?
- It's not any laboratory's job to have absolute omnniscience on every bug devised by nature or man (or both); putting that responsibility on Fry is absurd. It's also a classic discrediting tactic; e.g., "if you don't give me all the specific answers, you are a fraud!" (And the questions of "FUD" just keep coming...)
This is nuts. Lou, can you close this topic? How about focusing on other people that need our TLC?
Hiker's been 'round these parts since the earth was flat. I'd bet the ranch there's no intention to discredit anyone. I join Ms. Reber in a call for civility. No one is saying the results are a crock -- far from it. She's saying someone ought to pay attention. That they won't or haven't doesn't mean the lynch mob should start brandishing the hanging rope.
I'm pretty sure the moderators will let you know if they need help.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Hiker, you make some very good points now that I've considered it. Tetracycline clearly doesn't work on the common type of Hemobartonella we're seeing (potential Mycoplasma), yet, Rifampin and Levaquin in combinations can often be useful for the tick-born variety of Bartonella, which is....a bartonella like organism. We don't really even know exactly what it is.
I appreciate that you made these phone calls. I can keep records of what people say, including doctors, and I often compare them to prior statements that they've made to other patients.
You'd be surprised, but I actually get conflicting information from the very same doctor sometimes. It's not often a result of malice, but that they're flip-flopping because they don't know exactly what the facts are, but at one time they thought they did.
At any rate, what Dr. F said, was of value for me.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I really appreciate your posts here. I think it's important for all of us to express our thoughts and experiences, and to have intelligent debate.
i wish you all the best in your journey to wellness.
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
May I suggest Fry lab goes a little bit further to identify these pathogens have genetic materials by Laser Capture Microdissection?
What's Laser Capture Microdissection: A transparent transfer film is applied to the surface of a tissue section.
Under a microscope, the thin tissue section is viewed through the glass slide on which it is mounted and microscopic clusters of cells are selected for isolation.
When the cells of choice are in the center of the field of view, the operator pushes a button which activates a near IR laser diode integral with the microscope optics.
The pulsed laser beam activates a precise spot on the transfer film, fusing the film with the underlying cells of choice. The transfer film with the bonded cells is then lifted off the thin tissue section, leaving all unwanted cells behind.
After Microdissection procedure stated above, a single pathogen can be isolated and its genetic material extracted, amplified and sequenced, then its sequence will be compared with all known sequences of microorganisms to find out if it's a new pathogen or a pathogen already known.
These techniques are readily available. If you have the sequence, no body will doubt you. Further, the sequence would contribute greatly to the diagnosis and treatment of the pathogen. So it's worthy of trying.
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hiker said: He did contradict himself, though, saying that drugs that treat true bart would work on the mycoplasma such as rifampin and levaquin. Then he said the tetracyclines would work on the mycoplasma. (but they don't work on bart)
Respectfully, this is not a contradiction. Saying that drugs that treat bart will work on mycoplasma is not the same as saying this:
Drugs that work on bart will work on mycoplasma AND all drugs that work on mycoplasma will work on bart.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
I have tried to get a qualified interpretation/recognition of my smear.Not only because that would be a precondition for having treatment myself- but also because it would be a help to everybody if the medical community outside Lyme-circles took an interest and could help in finding out about treament etc. So far I have had a Pcr for mycoplasma and a general Pcr for pathogenes made by a big lab in Europe based on the smear photo.I dont think that would have been possible unless the pros thought the smear might show something worth the while. Also, I have had a pcr for pathognes in a renowned uni.lab.Unfortunately all negative- meaning that the bug in my smear is still unidentified. I have chosen to see it like that- and not that it is a proof that the the dots in the smears are pollution or whatever.(although it can not be ruled out completely,unfortunately.) I take it for granted that Fry must have made control tests with clinically healthy persons.
I find cdc`s reaction telling.Simply not good enough.
There have been strong reactions against hiker53 here.I think many more reports to the CDC might be helpful.Also any attempt from people to identify the bug by having tests made where they can. It is very difficult for me to see how attitudes/opnions like that may affect other people in a negative way. Gale
Posts: 268 | From europe | Registered: May 2008
| IP: Logged |
Isn't Fry Labs a research lab and not a commercial medical lab?
It's been quite awhile since we used them and things could have changed, but I think I remember something in the paperwork about them being a research lab.
I have to believe that if there was something that needed to be reported to the CDC, then the lab would report it.
But the question remains, what has to happen to get the CDC to do something?! ...research and data compiling!!!
Of course they think nothing of the people in my area that have positive lyme tests, but not CDC positive lyme tests. We would be an endemic area for sure if the guidelines were changed.
I wish they would compile numbers on the cases that are not CDC positive. Say compare # w/ positive test, # w/ positive CDC test, and # clinical diagnosis only, # w/ co-infections etc.
Just my $.02
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Hiker53, you have started an excellent thread, which inspired me to suggest Dr. Fry to go a little bit further to settle the argument of real bugs or artifacts.
I would agree that without positive results from genetic material-specific testing like FISH (fluorescence in situ hybridization),PCR or microdissection and sequencing, the blood smear results cannot make definite, convincing conclusion.
The first two methods only work for already known pathogen(s). The last method is very useful for detecting unknown pathogen(s), like the pathogens on the Fry blood smear.
I am sure they haven't done this, otherwise, if it's positive, it would be a big blown on the head of IDSA, and a big breakthrough in the medical field as well; if it's negative, they would have discontinued the test.
Since they are running a research lab, this should be the right direction to go next step.
Dave
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
FWIW-
I had a whole slew of PCRs drawn the same time I had the draw done for the Fry slide. All MDL PCRs were negative. I do realize that they're not perfect, otherwise they'd be the standard test.
I had positive IGMs come out for Lyme, B.duncani and Mycoplasma Pneumonia, the coccobaccili on Fry, but still had nada on all of the PCRs.
I can't help but wonder if it was the Mycoplasma that they saw. I also wonder why they didn't find any Babesia.
I had just gone through a wicked flare. I wonder if some time after a flare subsides it is harder to find. Could that be possible?
This whole thing has me scratching my head too. (and please don't tell me that's a symptom )
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
posted
Kelmo said they are doing some genetic testing at University of Arizona with what Dr. F found. Apparently he thinks it is a brand new bug--perhpas part mycoplasma and part bartonella.
Perhaps Kelmo will pop in and set me straight if I interpreted what she said incorrectly.
I did send a picture of my smear to the University of Illinois Ag office and a professor agreed to look at them and see what he thought. Of course, he said PCR testing is more accurate and I believe Kelmo told me that Fry Labs has done PCR testing.
So maybe we do have a weird new bug--that would be really bad news. Still think Dr. F should report it to the CDC, though.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10174 | From Illinois | Registered: Aug 2004
| IP: Logged |
Today Frylabs have changed description of the smear photos on their website.
Pic 1- Like before: babesia microti,( no reservations i.e. correspondence between smear and serology/PCR)
Pic 2- Like before adherent coccobacilli consitent with Haemobartonella.(i.e. might be other things)
Pic 3- adhering coccobacilli ring forms Haemobartonella(no "modifications" now - before something like +PCR mollicutes-haemoplsma like)
Does that mean that a conclusion has been reached regarding type 3 smears (ring forms). But not for the ones with the type 2 smear? OR is it just an insignificant change?
P.S.By the way.Has anybody got a smear with ring forms like pic 3.I dont recall any reporting that in the other topic about haemobartonella findings in frylabs.
Posts: 268 | From europe | Registered: May 2008
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote:Kelmo said they are doing some genetic testing at University of Arizona
I don't recall saying that. I mentioned T-Gen, but we have a facility in Phoenix.
Dr. F mentioned the process is long and alluded to the doc who discovered H Pylori. Remember, that doctor infected himself with bacteria, then treated it to prove ulcers are caused by bacteria?
posted
My apologies, Kelmo, I knew you mentioned T-GEN, but I did not realize it was in Phoenix. What exactly does T-GEN do? Anybody know? By the way Dr. Fry said they would know in 2 months when I spoke to him yesterday, although I think that is unlikely. Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10174 | From Illinois | Registered: Aug 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
T-Gen maps an organism, it diagrams it. I know it has something to do with molicular structure. They do research. Here's a link to their website.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[lol]](graemlins/lol.gif)
)
Printer-friendly view of this topic