hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I and another member of lymenet wrote the CDC about the hemobart/mycoplasma blood smear results.
They looked at the picture of the smear and basically said they were not any kind of bacteria. That if there were that many bacteria we would be dead. They felt the "so called bacteria" were artifacts of stain or minute parts of red blood cells.
To quote: If this were some type of bacteria, to see this many in a peripheral smear would imply a staggering high bactereimia (the patient would likely be moribund or dead)."
They also implied that we were the only two people to contact the CDC about this finding. Did Fry labs not send them blood smears and report it? What is going on?
I would suggest that others e-mail your photos to the CDC and see what they say. I would also call Fry labs tomorrow. I don't know what to think now! Hiker53
posted
Well, I am sorry to hear this -- though not too surprised, based on some very critical feedback about blood results from some people (patients?) on this forum.
Dr Fry and his company know their ****; so I would ask the CDC to explain what kinds of "junk" or life forms are attaching themselves to blood cells! Duh...these parasites aren't supposed to be attached to cell walls, or inside the cells (intracellular). Let's face it -- these blood cell parasites are not normal and do contribute to blood flow problems. Many bright scientists have shown in theory and practice how these pleomorphic critters CAUSE disease! So can we get real about this stuff?! It's hurting so many people!
The CDC's response is incredibly predictable. Their purposefully understaffed organization is now reduced to a limp puppet of over-worked people that once wanted to change the world. Now, I don't know what this organization really can do for anyone.
-------------------- 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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TerryK
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posted
The CDC is not exactly a reliable source of info when it comes to TBI's.
I wouldn't jump to conclusions until you talk to fry labs, your LLMD and perhaps do more research.
I think I saw some slides from another source that looked very much like the fry lab slides that have been shown by various people on this site. They may have been feline slides like this one though. http://www.fabcats.org/owners/anaemia/graphics/anaemia2.gif
I don't know how yours compare to that but I would look around to see if you can tell anything about your slides compared to others.
Also, it's possible that this is a new pathogen or strain. Wouldn't be a huge surprise since it seems that new strains of TBI's are being discovered often enough.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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hiker53
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posted
TerryK and others. I do not know if the CDC is correct, but I would think they could read a simple blood smear accurately.
Also, TerryK the picture you posted is of anemia in cats. The dark spots in the cells are not the issue--the lack of numbers of red blood cells is the problem in that smear.
Cold Feet: At least the CDC took the time to look at the photos and give a reply.
That is why I suggest others contact the CDC and Fry Labs. If only two people have contacted the CDC out of all of us, they are not going to listen.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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SForsgren
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posted
If I had to pick between Fry and the CDC...well, I won't say much more. I for one certainly am NOT asking for my money back.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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kelmo
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posted
Would it matter if I mentioned that I SEE the lab every time I go in? It's not a Xerox machine.
I have seen the freezer that keeps blood samples for future PCR and DNA testing. It's an active lab, with real technicians.
I've seen various slides from various patients. You ought to see the autism patients. I'm sure the CDC would say those children should be dead.
I think this is an alarmist post and I don't think it carries the weight of accusation.
There are too many people I personally have contact with, who were found to have organisms that IGENEX missed, but came up on the Fry blood smear.
When has the CDC ever been our friend regarding Lyme disease?
Just putting in my two cents from an up close perspective. I don't have any stake in this clinic, I don't profit from it in any way. I don't get "bird dogs" for referrals.
I'm just telling you what I see, what I know, and what I've heard in person, and summed up very well by the doctor himself on In Short Order with Sue Vogan this month.
I know this thread is going to turn into a monster, so I'm only going to post this one time. I can't change your mind, it seems you're hell bent on finding a conspiracy, but I had to speak.
northstar
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Member # 7911
posted
Amazing that the CDC can come up with a conclusion like that without knowing or checking on the lab. And then to disseminate that information..."you would be dead". That is irresponsible and based on no knowledge.
Ugh.
Sort of like those big shot doctors diagnosing the morgellon's patients as dop, without either seeing a patient, seeing a lesion, or seeing a fiber. Just describing it makes them sure of their diagnosis.
The state of this nation and graft and misbehavior in federal offices is becoming deplorable.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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hiker53
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posted
I am not hell bent on finding a conspiracy. What I would like is for other people to send their pictures to the CDC, so maybe they will take a closer look and take action.
Has anyone else done that and tried to get the CDC to take an active role? No, only two of us have done that and now you guys/gals are condemning me for writing the CDC?
How do you ever expect government to change if you do not take an active role in it?
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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northstar
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posted
Hiker, I dont think there is a conspiracy either. But there is ignorance, and there are things such as unknown organisms. And there are people like the CDC rep who spoke so authoritatively, without any information.
I am sure Fry will be doing more work.
I just treat my positive results as another piece of possible information. I have specific symptoms, so treatment is based on that and not on Fry results. The Fry info is just another piece of the puzzle which will be addressed at a later time.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Wow. Sorry to hear the response you were given from the CDC. It's totally what I would expect though.
If the CDC begins to receive a bunch of emails of Fry labs. slide pictures.. won't The CDC most likely make every attempt possible (even more than they have in the past) to shut down Fry Lab, ...and possibly our other accurate tick-borne labs?
Posts: 371 | From CT | Registered: Jun 2008
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I don't think anyone was accusing you in particular of a conspiracy, but I do think that your original post, in which you stated that you wanted your $295 dollars back came down on the side of the CDC over Fry. I too find it a bit odd that Fry hasn't contacted the CDC about their results, but maybe we don't have the whole story...?
Historically, there have been many instances in which pathology results have been read as "artifacts" only to later find out that they are not, in fact, artifacts.
Even in the evaluation of cancer slides, pathologists argue about what they are "seeing." I have attended enough brain tumor conferences to know that interpretation of slides is not an exact science. Of course, this means that Fry could potentially be wrong, but at the same time, the CDC could be wrong. The bottom line is that the state of the science is uncertain.
I hope that what the CDC had to say does not deter you from your treatment. I would continue to look for evidence one way or the other before making a decision about what is right for you.
Posts: 129 | From Virginia | Registered: Feb 2008
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posted
Well, if you're really gullible enough to believe the CDC, then you should send the results to the IDSA and ask for their opinion also. No doubt you will believe them too.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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timaca
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posted
A well respected lyme doctor looked at a blood smear of a friend of mine from Dr. F. He said the same thing. "You'd be in ICU or dead if this was for real."
I like Dr. F. I've met him. I know he attends lyme conferences. However, I would never trust one lab for a diagnosis. Send your blood to several labs. To rely on one person or one lab is asking for trouble.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Lymeorsomething
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posted
I haven't used Fry yet but the whole thing seems kind of odd. Aren't labs subject to some kind of certification process and inspection?
If their samples are purported to be this misleading, why aren't they being investigated? And why would the CDC seem so disinterested in so-called misinterpreted results?
It seems to me that if Fry Labs were doing anything wrong they'd be subject to more heat by now.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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hiker53
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posted
Micul,
I find your comment to me rude. Never did I say I believed the CDC. You are missing the point of this post. Why aren't other people getting the CDC involved to try and help Fry find out what the mystery germ is?
If people continue to be rude, I will just delete the whole post--it's not worth the stress.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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Lymeorsomething
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posted
Hiker, your post is one of the most interesting I've seen in a while. You raise an important issue and it should be addressed rather than dismissed.
Pay no mind to careless comments....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Michelle M
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posted
Hiker, I can see your point perfectly.
In a "normal" world, the CDC OUGHT to be interested.
However, as you probably know, they have the sheer cheek to warn lyme patients away from "certain" labs, i.e., IGeneX -- because they take their marching orders from their friends at the IDSA. They continue to demand the two-step testing process (positive ELISA before a positive western blot) in spite of up to 70% false negative rate on the ELISA even by Johns Hopkins reports).
These people clearly do NOT want to hear anything about lyme.
I would not be holding my breath waiting on them to gasp in surprise and amazement at the discovery of any heretofore unknown organisms. In fact, I'd look for them to attempt to shut down Fry Labs.
I do believe Fry is righteous by virtue of returning many negative samples, as reported here.
However, like all things lyme-related, I doubt they're much interested, unless it's to try and discredit them.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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hiker53
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posted
Hokie,
I edited my original post to take out the $295 money back comment when I realized people would not see it as a joke. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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METALLlC BLUE
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posted
The CDC said the same thing to Alan McDonald when he presented his findings on alternate forms of borrelia burgdorferi.
-------------------- 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.
posted
Sorry hiker, but I do find it rather gullable of someone with your experience to be taken in by the CDC. I agree that they are probably doing everything that they can to shut down Fry. I'm really surprised that hey have been able to continue for so long as it is. Fry is way too experienced to mistake bacteria for artifacts or blood particles.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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METALLlC BLUE
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posted
The CDC is not your friend. Tick-born illness is blatantly ignored, or minimized by the CDC. They reference the IDSA for "everything" they do or say, about Lyme Disease in particular.
Trying to get the CDC to do anything about tick-born illness is like trying to get Allen Steere to consider the "possibility" that borrelia burgdorferi can persist in-spite of "adequate antibiotic therapy."
There are a vast array of studies supporting persistence, and the guy won't budge. The CDC has demonstrated the same stupidity and dogma.
-------------------- 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.
hiker53
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Member # 6046
posted
Micul,
You missed my point again. I have not been taken in by the CDC. I even e-mailed them back and said to look at the smear and compare it to a feline hemobart smear (and gave them an image to look at).
I just think it is time that we get the CDC to believe that tickborne infections are not to be taken lightly. But since no one else seems to want to help, fine, just sit on your behind and complain.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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posted
I don't think that I am missing the point at all. The point is that You are expecting the CDC to help...they are not going to help, and whatever feedback or interference they end up giving will not be of any help IMO.....it will only result in getting Fry shut down, and who knows what else.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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TerryK
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posted
Hi Hiker53, You wrote: Also, TerryK the picture you posted is of anemia in cats. The dark spots in the cells are not the issue--the lack of numbers of red blood cells is the problem in that smear.
The slide shows the organism that caused the anemia, Mycoplasma haemofelis (formerly Haemobartonella felis) which is why I linked to the picture. As I recall, those organisms look like the organisms seen in fry lab slides that say they are suggestive of Haemobartonella.
I think it's a good thing to bring this up for discussion. I don't know the right answer but I am a bit concerned that the CDC will try to close the lab.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Thanks for posting. I see no risk at all- like some here- that the cdc should try to shut down Frylabs. I have got different reactions from other experts regarding my smear findings.In consequence I think many more should email their smear photos to the CdC to make them attend to the matter in a serious way.What they have done so far ("if those dots were bacteria-you would be dead") is nothing but a brush-off reaction.
So far what the cdc has demonstrated is only their lack of competence.If "mystery bug" is in the vincinity of Bartonella, you cant reason the way they do. http://www.emedicine.com/MED/topic212.htm
Thanks Gale
[ 29. July 2008, 08:26 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
I don't know who is right but as to the CDC saying that we would be dead if we had this many bacteria in our blood, I remember what Dr. J. Sch. in Florida said on his website:
quote: Fourth, you should appreciate that it is unlikely you will ever be cured of Lyme in the presence of Bartonella. Why?
Bartonella is a massive immune suppressing bacteria. It can float attached to Red Blood Cells in vast numbers and not even cause a cold or fever. Just imagine, bacteria are floating in your blood and you might not have any fever at all!
If you had Staph or Strep in your blood at these levels you would likely be dead in 48 hours unless you were pumped full of antibiotics in an ICU.
So how is it this huge elephant floats in vast numbers and causes no severe fever and no disastrous signs of deadly sepsis -- infected blood throughout the body with massive inflammation.
It is because it has ways of shutting down the immune system. It violates many rules of bacterial behaviour and this is one reason it has been so seriously missed until recent years.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Hey,
This.....contact the CDC idea isn't the smartest thing.
Unfortunately...due to their ignorance they would then try to shut down the Lab.
I say ...thumbs down.
Too alarmist and counter-productive.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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posted
if they were really to attempt to try to close down Frylabs they would have to dig deep in the facts.Hard for me to see how that would be a bad thing. Gale
Posts: 268 | From europe | Registered: May 2008
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METALLlC BLUE
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Member # 6628
posted
The CDC isn't going to shut down Fry Labs. Just like Igenex, they can apply as much pressure as they like. Dr. Fry is competent and aware of the politics, threats and issues at stake.
The lab is run well. And additionally, they aren't pumping out positives using one, two or three photographs. That's absurd to even consider. Patients here have compared hundreds of photographs. None of them the same, and many have reported negative results.
This aligns with the very facts behind the study of tick-born infection. The infection isn't homogenous throughout the blood stream. Many samples can be void, while one may have positive identification.
The theory of artifacts is absurd in these cases, when a patient is chronically ill, has positive testing or at least suggestive circumstantial testing, and has or is responding to treatments aimed at what was seen on those slides. It's an excuse used to minimize the facts.
Just ask the patients who tested positive for Bartonella via Quest, then Igenex too, and then went to Fry, and of course, came up with the results we see on the slide. Then, when treated with Levaquin, Bactrim, or other antimicrobials, repeated the testing and found it clear as day. It's possible it's a false negative, but if the patient is well it served it's purpose well in the evidence bin
The facts are simple: Fry is good, and appropriately certified. The facts when overlayed with patient reports of positive testing, in conjunction with other tests, indicates the lab is blindly identifying the correct pathogen without knowing who has previously tested positive.
And the CDC, says Chronic Lyme and Chronic Co-infections of Lyme, do not exist. You can't convince someone that dogmatic without extensive world wide data from a huge array of credible sources identifying a repeatable fact, whether through a microscope or a double blind placebo controlled trial that is appropriately structured. Patients sending photographs, is not going to help.
Go ahead and send photographs of spirochetes you cultured (if you or your doctor managed to) to Steere, Shapiro, Zemel, Wormser. See what they'll say. The same thing. "That isn't real, it can't be. That isn't Lyme, that's something else."
In order to help, we have to push the research and advocacy. We've got to force a collapse of financial grips held by the domatic. Only with overwhelming information representing repeatable facts from credible sources, can that occur.
-------------------- 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.
posted
I don't think hiker is proclaiming a conspiracy either - at least on Fry's end.
If hiker IS proclaiming a conspiracy on the CDC's end though - I'd have to agree. How can they deny what their eyes are seeing? - unless they are a magician.
Therefore, I thought this article was appropriate, though I think it should read - Study: Magicians Smarter Than The CDC.
Magicians are way ahead of psychologists when it comes to understanding and exploiting the human mind and our perceptual quirks.
A new study, detailed in the current online issue of the journal Trends in Cognitive Sciences, reveals how elements of human cognition, such as awareness and perception, could be explained by the success of some techniques commonly used by magicians.
For instance, vanishing tricks rely on the idea that we are only aware of a small part of what's in our visual field.
"Although a few attempts have been made in the past to draw links between magic and human cognition, the knowledge obtained by magicians has been largely ignored by modern psychology," said researcher Ronald Rensink, who specializes in vision and cognition at the University of British Columbia in Vancouver.
Seeing is believing?
Rensink, UBC colleague Alym Amlani and Gustav Kuhn of Durham University in England recently lifted the lid on some key techniques in the classic magician's toolbox.
One of their revealing experiments highlighted the disconnect between what participants saw with their eyes and what they were focused on with their minds.
The researchers showed 46 participants a video clip of a magical performance while measuring each subject's eye movements. In the performance, a cigarette and lighter once in the magician's hands disappear (he drops each into his lap). About 50 percent of the participants claimed to see the objects being dropped while the others didn't.
"What people actually saw was not related to where they were looking," Kuhn told LiveScience. "Several participants who were looking at the object being dropped failed to see how it was done."
Even though their eyes were focused on the objects, their attention was elsewhere, he said.
Magicians have used so-called misdirection tricks for centuries to make scarves or animals appear out of thin air or cause other objects to vanish. But it's only been in the last two decades that vision scientists have found that only a small part of the information that enters your eyes, essentially the part that has grabbed your attention, enters your conscious awareness.
More mental tricks
Optical illusions rely on the fact that we can "see into the future." When we see a magic trick, for instance, the light from the objects hits our retinas about one-tenth of a second before the brain translates the signal into a visual perception. To compensate for the neural lag, we have evolved to predict the outcome of events.
These predictions leave us vulnerable to deception, the researchers say.
For example, a vanishing ball illusion indicates that anticipation plays a factor in what we see, and our minds fill in the blanks. In this trick, the magician tosses a red ball into the air two times and on the third throw, instead of releasing the ball, the magician holds onto it. However, study participants reported seeing the magician toss the ball into the air three times before the ball "disappears."
Then there's the trick where you pick a card from a deck of playing cards. Voila, a magician guesses which card you picked. Turns out, this "magic" is really a mind trick called forcing where the magician controls which card you pick by, say, putting you under stress to act quickly.
A study led by Petter Johansson of Lund University in Sweden published in the journal Science in 2005 showed that observers often fill in the gaps of memory by fabricating reasons for their choices.
The researchers say magician's techniques could be used by cognitive scientists to test various theories.
"Magicians have been using these psychological principles to manipulate our perception [for centuries]," Kuhn said. "Cognitive science, particularly looking at attention and the interaction between attention and awareness, is a fairly new discipline, whereas magicians have been doing this for centuries." Jeanna Bryner
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posted
People who contact the CDC expecting to get help for anything are likely to come up with trouble, not help. It is extremely naive to have done this. How can anyone still believe they will get help from the CDC? Not for lyme and tickborne diseases for sure. And look how they have handled autism and vaccines. And they were censured by Congress for using money appropriated for chronic fatigue research on something else instead.
Honestly, I am flabbergasted at the expectations of gale, hiker, etc. How could you have thought any good would come from this?
Posts: 8430 | From Not available | Registered: Oct 2000
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tailz
Unregistered
posted
If EVERYONE who had a test done by Fry sent their slides in, good could potentially come of it - eventually.
To call posters here naive is not fair since it's always taken one 'naive' person to start a revolution.
So ease up - I live to see another revolution. That's one reason I post about the dangers of EMF/RF.
One day the majority on this forum will be aware of the dangers like I am, because they will have experienced sufferings similar to mine and will vow to remove the frequencies that are preventing their bodies from healing.
I should also mention that I went to an ID doctor pretty much knowing that he would deny my Lyme due to a heads-up here on the forum, but I am glad I did it.
I witnessed the conspiracy firsthand, and had this not occurred, I may not have believed there even was one.
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SForsgren
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posted
The problem is you will get several people to go to the CDC with their photos and rather than opening their mind, they will investigate and shut down the lab and then we all lose another important tool. I would personally just move on and focus on getting well.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
tailz - you registered on lymenet in 2006, after the big push by the CDC to shut down Igenex, so you don't understand the problem at all. Newbies need to do more research on lyme politcs before they charge around doing things. Loose cannons can do a lot of damage. And it won't just hurt the people doing these things, but all of us, so we are entitled to have opinions too.
Posts: 8430 | From Not available | Registered: Oct 2000
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hiker53
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posted
Why is it okay to be political activists and have rallies and try to get the government's attention, but not okay to get the CDC's attention? I am not naive. If everyone would help, maybe the CDC would start paying more attention.
Fry Labs is a certified lab. It will not be shut down.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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METALLlC BLUE
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Member # 6628
posted
Hiker, I've always been of the mindset, that even if the facts or other's opinions are stacked against me -- if I believe something is right -- I'll do it.
If you believe in what you've discussed here, then don't give up. I'm a team player, but only in-so much that it serves "me" in what I believe is right for a cause.
-------------------- 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.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Hiker wrote:
quote: I am not hell bent on finding a conspiracy. What I would like is for other people to send their pictures to the CDC, so maybe they will take a closer look and take action.
I went against my better judgment to post a second time. But, I wanted to publicly give you the benefit of the doubt.
It didn't seem in your initial post that you were trying to corner the CDC. It seemed the other way around, so I must've misread.
However, now that you've explained your position, I still have a caution that's already been mentioned here.
The CDC could twist it, and then we wouldn't be served at all. However, I'm not here to stop you if you feel compelled to do this.
Dr. F is going through the proper channels to get his research in the hands of those who can make a difference. We may not serve him by jumping steps.
I also agree with Timaca about getting several tests by different labs. We did that, as well. It's just nice to have a blood smear to support or supplement what we have done elsewhere.
I appreciate your attempt to get notice for our plight. For now, I'm just going to wait and see what happens. It's only been two weeks since he reported his findings to peers. It's still in the infant stages.
On the bright side, US News this week says that Lyme disease is increasing due to global warming. Really? Could it actually mean that more doctors are accurately diagnosing and reporting it?
sparkle7
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Member # 10397
posted
It's a troubling question about poor diagnosis... I haven't been tested by Fry. I don't think I have the co-infections but it's hard to tell.
I don't think this is just about Fry labs - it should be about all labs testing for tick borne illnesses.
The reason I've been ill for 10+ years is due to misdiagnosis by many doctors. Maybe the CDC should check all the other labs, too... if that's what the issues is.
All of my lab tests were negative. Lyme has been around for over 25-30 years. I think if the CDC was interested in people being well, having proper tests, or not getting Lyme there would have been more attention paid to these issues by now.
The CDC is being paid for by our tax money but it is not representing the public interest. I wouldn't expect them to do anything positive for us at this point.
They have done the opposite, in my opinion. Many alternative doctors have been subject, over the years, to witchhunts by gov't agencies.
You don't really see this sort of thing happening over pharmaceutical drugs that kill people or other condoned medical practices - it's always the alternative doctors...
Unfortunately, I don't think the gov't is protecting the people in this instance for a variety of reasons. I don't think it's productive to alert them about this issue.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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hiker53
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posted
I will delete this post this evening as I do not want to have a battle going. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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kelmo
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posted
We love you hiker...you don't need to delete the post, there's no battle.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Hiker....I totally appreciate your post and know that you have the best of intentions here. Aren't we supposed to share information, experiences, etc. here?
There were previous posts regarding the reliability of what was reported by Fry labs so I'm not sure why your post is so different. Just because a laboratory 'supports' our world, doesn't mean they can't have flaws.
I have contacted the CDC as well on a number of issues (unrelated to any specific labs) and although I believe they may be misguided on some things, I certainly do not believe they are 'out to get us'. Unfortunately they are likely over-worked and under-staffed and are letting the IDSA fight out their own guidelines, etc.
Most of us can easily take our pictures and seek the opinions of our local labs, MDs, etc....people that are accustomed to looking at slides regularly.
Posts: 561 | From mass | Registered: Jul 2007
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sparkle7
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posted
I don't see any reason to delete this. It would be sort of like censorship...
We can all agree to disagree. It's not personal - at least I don't take it personally. Some people can be a bit confrontational or rude but I just ignore them.
We all have a right to our opinions.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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hiker53
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posted
I made a lot of phone calls today. Called the University of Illinios vet school. They no longer do blood smears for hemobart or mycoplasma on animals as the stains can lead to false positives. When they did use stains they used FDA approved stains which Fry labs does not.
Now, keep in mind I am not against Fry labs. I sent in my blood to check for babesia in a smear, but was surprised to get the hemobart/mycoplasma findings.
The vet school said they use PCR testing now and a PCR test should be able to quickly determine if it is hemobart of mycoplasma and then they can narrow down the type.
So, then I called the manager of Fry labs to see if the PCR had indicated anything. He did not know and said he would get back to me.
So, then I called Dr. F of AZ who kindly called me back and said they think it is a mycoplasma, but they don't know yet. I don't quite understand, because a PCR test should be able to tell them that at least. He said in a few months the lab should have a better protocol to figure it out.
Dr. F also said he had not reported it to the CDC--not required to report hemobart or mycoplasma.
He said the supposed mycoplasma could come from any biting insect and not necessarily a tick. Although I do find it odd that I have lyme, ehrlichiosis, two types of bartonella, and this mystery bug.
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)
So, now can you see why I am confused. I think I will have to wait until the lab gets the skill (PCR testing takes skill) and comes up with what the "bug" is. That is why I thought the CDC should be informed, because if this can be transmitted by any biting insect or arthropod vector, it could lead to an epidemic worse than lyme.
So, I will wait on treatment until I know more.
I still believe that if we want the CDC to be more on our side we are going to have to educate them and if more people send in information or smear pictures, they may eventually pay attention. That is how change happens (it may be slow, but it has to start somewhere). But that is just my opinion.
posted
We just want so badly for mainstream science and medicine to recognize our situation.
What is it going to take?
Posts: 353 | From Florida boonies | Registered: Nov 2005
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SForsgren
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posted
It is NOT a matter of them getting the skill to determine what the bug is. There are thousands of times the number of bugs that have no name than those that have a name. It may or may not be a bug with a name.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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hiker53
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posted
I also contacted Louis Magnelli, PhD this morning who knows a lot about tick borne diseases. If this is a mycoplasma it would not be seen under a regular microscope easily. He said an electron microscope would have to be used.
So, that raises another question. What kind of microscope was used--it was not electron. So is what is on the photographs a mycoplasma?
Again, be clear I am not against Fry labs, just raising some questions.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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quote:Originally posted by hiker53: I think we will have to wait until the lab gets the skill (PCR testing takes skill) and comes up with what the "bug" is. Hiker53
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?
-------------------- 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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hiker53
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posted
I will edit my post to say I instead of we. That was an honest typing error. If you have read the posts I am not anti-Fry labs. The doctor called me himself and I give him big kudos for that.
I don't see what is wrong with trying to do research and figure out what is wrong with me and others and involving other agencies to get anwers.
And yes, PCR has everything to do with this, since that is what is used to determine the germ as indicated by the doc himself.
You might be satisfied with a photograph that points to dots, but cannot identify them (and I am not saying that is Fry Lab's fault!), but I am not satisfied with that.
So, I will continue to research and I will wait on treatment until I know what the mystery bug is.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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Melanie Reber
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posted
I realize this is none of my business...and I usually stay out of on-board arguments. I know it is not my place to judge intentions of others.
However, I do think that all members should be able to express their thoughts and ask questions here without ridicule.
It would be impossible to think that we are going to agree on everything. But, can't we disagree without making it personal?
Actually, I really do enjoy reading different opinions and hearing about different perspectives...that is how I learn form each of you.
I just know that I would be more apt to continue reading when the tone remains civil.
Posts: 7052 | From Colorado | Registered: Mar 2003
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feelfit
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posted
Kudos to Melanie AND to Hiker53.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Michelle M
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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
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METALLlC BLUE
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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
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Dave6002
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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
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hiker53
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posted
Dave,
I do not know if Fry Labs uses this technique or not. You could call and ask them toll free
1-866-927-8075 The techs have been very nice at answering questions when I have called.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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METALLlC BLUE
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posted
Yes, please do call Dave or Hiker. Let me know what you find out. I'm waiting for my results from Fry on the blood smear.
-------------------- 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.
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
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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
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hiker53
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posted
Metallic Blue or Dave,
I will let you call Fry Labs or Dr. Fry to ask about the microcope technique.
I have called the lab several times and spoken with Dr. Fry.
Someone else might be more effective and I cannot do this alone.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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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
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Dave6002
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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
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AliG
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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
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hiker53
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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: 8890 | From Illinois | Registered: Aug 2004
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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
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kelmo
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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?
hiker53
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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: 8890 | From Illinois | Registered: Aug 2004
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kelmo
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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,
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