posted
Last week I sent a letter to Dr. Fry, asking more questions regarding the 'haemobartonella and mycoplasma' results that he is reporting. I relayed to him concerns regarding whether these were non-viable artifacts (as some doctors/scientists I had interacted with had suggested) and if not, I wanted to know what he was doing to find out what it really was so that it would have some clinical and hopefully therapeutic meaning for everyone.
Essentially, based on the molecular data they have collected thus far, he is sure it is a bacteria and is sure it is in the Mollicutes class (e.g. mycoplasma genus).
My line of questioning at that point was to try to better understand his perception of the pathogenicity of these mollicutes...meaning, does he believe that these could be causing symptoms/disease or is it something that lives in harmony with most of us.
When I asked him if he has seen these in healthy volunteers his response was yes....however, he truly believes these buggers he's finding under the scope could be the cause of disease in many.
I tried to get more information regarding treatment strategies and pointed out that many patients have been on antibiotics for an extended period of time prior to getting these smears done.....his response was essentially that mycoplasma can be difficult to eradicate.
He has a number of things planned for the future to try to better characterize this organism but unfortunately, these things take a lot of time and money.
Not sure that this really answers the questions many of us are asking but wanted to share what Dr. Fry is willing to share with us at this point.
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I just answered another post on this, and this provides an additional piece to the puzzle. The findings I received when speaking to Fry Labs were that they have a Ph.D Molecular Biology working on this project full time to identify genetically exactly what it is they're seeing.
The have preliminary results and are quite confident so far in the data they have, but I don't know what data that is specifically. Now that you mention the "Mycoplasma genus" -- it does narrow down the possibilities.
So it appears we must keep approaching this and talking to them. Each person there is gradually giving pieces of the puzzle away.
-------------------- 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
is not posible a cultive? see spectrum of susceptibility to antibiotic, know if is sensible to tetras, quinolonas and macrolides
Posts: 108 | From spain eur | Registered: Apr 2005
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posted
This is groundbreaking scientific research on a shoestring budget with no grant money from NIH, done by a pioneer. We should not be asking for answers that are not there yet and individually taking up a lot of time contacting them for treatment ideas. When they have this nailed down, they will share it with everyone, starting with ILADS, so the lyme docs can have a crack at trying to figure out what to do about it.
They have no institutional support, unlike Wormser, Steere and the other black hats. So, cut them so slack please. In particular, I am thinking of those people who have said it is unethical not to share what they know.
Everyone wants to be cured yesterday. But since we are having to do this on our own, with the govt dragging its feet all the way, it is going to take longer. Be patient. Or if you are impatient, get involved in lyme activism, so that maybe some year the govt will see the light and give us some help.
Posts: 8430 | From Not available | Registered: Oct 2000
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If the mollicutes- assumption turns out to be wrong it might be anything from what it looks like on the smear-everything from a parasite to chlamydia pn. Another thing is that the dots in the smears may not even be the same thing.
If the bacterial assumption is wrong?
I believe that the text at Fry`s website with the picture (no 2) "consistent with haemobartonella" is premature at this point.
Gale
[ 26. August 2008, 03:17 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
Antsettler asks a key question. I threw this same question out to an Infectious Disease doctor and she said this was a feasible approach....assuming we could find a medium that would grow the bacteria. Problem is, who can do this for us? I'm asking around but I'm not very hopeful I'll be able to find someone to do this.
Lou, totally agree with some of your points.....hence my sharing my interaction with him....hopefully this will avoid added calls to him.
However, this is what happens when a laboratory wants to report clinical information that it really doesn't understand.....if you think about it, patients are helping to fund this research as they pay for smears that have little meaning at this point in time. We should be asking questions OR respectfully, Dr. Fry shouldn't be analyzing pateint samples.
His research literally may take up to 10 years to really understand the implications of this bacteria, if any. If there is something we can do (like what is suggested above) in the interim that doesn't interfere Dr. Fry's work, than we all win.
Posts: 561 | From mass | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
KS,
While not directly related, if you've not yet seen the research below, it may be of interest to you.
-
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others.
posted
As a person who also had this finding in their smear, I find this commentary troublesome...
When I asked him if he has seen these in healthy volunteers his response was yes....however, he truly believes these buggers he's finding under the scope could be the cause of disease in many."
So translated, this means that their tests don't mean a whole lot at this point? Comforting...
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote:This is groundbreaking scientific research on a shoestring budget with no grant money from NIH, done by a pioneer. We should not be asking for answers that are not there yet and individually taking up a lot of time contacting them for treatment ideas. When they have this nailed down, they will share it with everyone, starting with ILADS, so the lyme docs can have a crack at trying to figure out what to do about it.
They have no institutional support, unlike Wormser, Steere and the other black hats. So, cut them so slack please. In particular, I am thinking of those people who have said it is unethical not to share what they know.
Everyone wants to be cured yesterday. But since we are having to do this on our own, with the govt dragging its feet all the way, it is going to take longer. Be patient. Or if you are impatient, get involved in lyme activism, so that maybe some year the govt will see the light and give us some help.
Thank you, Lou. He has been striving to figure out the common infection in all his chonically ill patients for the last nine years.
The change from just plain bartonella to hemobartonella is based on PCR and DNA testing. He acquired new lab equipment to help him narrow it down.
Craig, when he says he sees these organisms in healthy people, that is correct. Some of us were infected for many years before a trauma or other illness caused long-dormant organisms to now flare.
One question he has is why these organisms cause illness in some and not in others.
When I took my daughter in to him, he told me I was probably infected as well, but my immune system was keeping it suppressed. I was highly functioning at the time, but over the past couple of years, I've started having symptoms.
My first blood smear was negative. After six months of zith, I took one Rifampin pill and had a huge herx. My blood smear came up positive.
posted
yes, to further Kelmo's point, Dr. Fry believes that like with many diseases, some immune systems can keep it at bay and others can't. Same is true of lyme disease....however, obviously some disease are more commonly pathogenic than others while other diseases only come about when the immune system is somehow compromised.
I believe there is some value in these smears....just not much right now. Unfortunately, the situation is even more complicated because little is understood about 'chronic mycoplasma' as with chronic lyme. So, even once we get the id, we still have treatment options to navigate through.
For those of you with positive smears (I've yet to run this on myself) I'd be working with whatever resources you can to try to get blood cultures and maybe pursue some of the options we've discussed above.
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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posted
Gale, I am tired of your repeated use of the word "unethical" in relation to this doctor's research. And I think you have been told this by others on several forums. I am going to send a complaint to the moderator about this.
If you can't understand why someone in the middle of scientific research can't keep communicating at every step to everyone who might be affected and give them treatment information they don't even know yet, then maybe you should stop posting on the subject altogether, because it does not improve the discussion.
Posts: 8430 | From Not available | Registered: Oct 2000
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Up to 6 months ago ,or so ,people with the smear finding (now "consistent with haemobartonella") were told that their finding was consistent with/ suggestive of bartonella. Bartonella bacteria in the bloodstream to the extent that they can be seen in a bloodsmear implies that a pcr will be postive.It`s as simple as that. I am aware that "a diagnosis" is not provided.To me there is no reason to scare people unnecessarily. I know of many people that have been treated for Bartonella based on this finding.Had it not been for the discussion in Lymenet many people would still be treating for bartonella.The discussion also has revealed that the alternative determination "mycoplasma spp" may be wrong (the ones in the other thread who have made a pcr were negative-can you actually see mycoplasma in a smear with a "normal" microscope?) and that we may, in fact, be looking at different things in the smears.Without further exmaination such as elctron-microscopy, pcr etc the "coccobacilli" might be very different things; from crystalized hemeglobine to very different bugs including parasites.Somebody in the other thread reported from Fry that pcr for general bacteria was not always postive.Does that point in the direction of universal description of the "bug"? I think this kind of policy- elements of it- is wrong, and yes- unethical. If you want to have a closer look at how "the Bartonella-identification" of the bugs has been (mis)used- buy Dr Schaller`s book ("this book could save your life"!...less than 100 dollars for a human life based on pure speculation if not nonsense)Ethical?
by the way: I am not at all questioning Fry`s motives, and I think he is on to something important- but elements of his lab-policy (actions) Likewise, I dont question your motives- but your policing policy (what you write above).
Some months ago Fry was on the radio talking about the new bug (very interesting)- discussing treatment options also.Nothing really worked for this clinically very broad defined condition.Why is that?Still the question! In the same interview Fry announced that he would bring back? references etc to the smear-photos on his website.(Unfortunately, they havent got around to that.)
So-Dr fry appears in public.He has an official website.He makes promissing research of great importance to Lymies(I think).He has also made a serious mistake and no attempt to correct it.
You have warned me not to discuss Fry in "public",or was it the pics that you did not want disclosed?,because he would be closed down by cdc or whoever.I have noted your warnings.They have not made an impression.Policing has to make sense! Gale
[ 05. September 2008, 03:07 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Gale, dear, it may be time to give this a rest. 99% of all the posts you have made here and on another forum have only been about this lab.
Constantly pounding the subject on the forums isn't making the doctor work any faster.
Don't you think if he could solve this, he would? Think of the great benefit it would be for him and for the rest of the world if he cracked the code, came up with the perfect treatment, and saved us all from chronic illness!
No one is ever forced to send their blood to Fry Lab. It's a choice, just like IGENEX. It's not perfect, either.
Many people have called and spoken to him personally. Many times over.
He has revealed everything he can. What he has told you is what he has told me face to face. I've seen the lab, I have seen blood samples come in little FedEx boxes.
I've seen numerous smear photos for different diagnoses.
If you are not satisfied, then look for someone within your country who can give you the satisfaction you are looking for.
You've given us great food for thought, and helped us dig deeper into gaining knowledge. Questioning answers firms up our convictions.
I guarantee when there is a breakthrough, it will be shouted here in bold letters.
All best to you Kelmo
Posts: 2903 | From AZ | Registered: Feb 2006
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quote:Originally posted by galehane: lou By all means
Only so that it is clear what I think
Up to 6 months ago ,or so ,people with the smear finding (now "consistent with haemobartonella") were told that their finding was consistent with/ suggestive of bartonella. Bartonella bacteria in the bloodstream to the extent that they can be seen in a bloodsmear implies that a pcr will be postive.It`s as simple as that. I am aware that "a diagnosis" is not provided.To me there is no reason to scare people unnecessarily. I know of many people that have been treated for Bartonella based on this finding. I think this kind of policy is wrong, and yes- unethical.
Gale
I totally agree with you, my LLMD didn't want to do a Fry test when I asked many months ago. I think he was right. The fact this doctor says that they find the same bacteria in healthy control and then speculates how this bacteria is the reason for people being sick is unethical speculation - unless he can provide some facts and numbers, which at this point he can't.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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posted
One thing we should keep in mind is that he is also a physician and there is probably a lot of clinical experience he may bring to the table that we don't necessarily have appreciation for.
Hey, if we don't buy into it and our treating LLMDs don't know what to do with the information, than we shouldn't be ordering the tests until we know more.
I'm definitely excited to see what he turns up....
Posts: 561 | From mass | Registered: Jul 2007
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posted
I certainly wanted to order the tests to see what would show up, but it is still a bit bothersome, that most peoples' results say the same thing.
And if you combine that with the fact that Dr. Fry told a poster that these organisms are often found in healthy volunteers as well, that doesn't speak fondly of the validity of the results.
I guess we need to remain steadfast with our LLMD's treatment, and continue to monitor our symptoms through clinical evaluations.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
CraigC.
I need to clarify what I wrote earlier about the organisms found in healthy people.
In 1990, I started a series of illnesses that were all very odd. Epstein Barre, that lasted three years, parvovirus, a very bad double pneumonia, that they could only classify as "viral".
Since 2000, I have been relatively healthy. Other than some lingering fatigue, which I thought I would just have to live with since having all those diseases, and asthma, I considered myself heatlhy
In fact, if you just looked at all my blood tests and x-rays, I am the picture of health!
However, I started having some night seizures that were unexplained. In fact, the first blood smear I had by Dr. Fry was clean as a whistle!
After a six month course of zithromax (something I did on my own with Dr. F's blessing), I had my blood retested...and there they were...the same organisms that everyone has.
Since we are out West, we have Lyme, but it is usually from someone who traveled back east, or a transplant from the eastern seaboard.
Because he had so many sick patients that didn't respond to the usual Lyme treatment, he was searching for the one organism they all have in common.
As for Babesia, he said he has that down to a 100% identification. Lyme, he said, he can clear up in a year. But, this other organism, he always referred to as Bartonella, until the DNA and PCR proved otherwise.
Since you can really only test for Bart Q & H, he ran under the assumption that if negative for those two, it must be one of the others that aren't covered in normal lab tests.
When I first took my daughter to see him, he told me that I was probably infected, too, but my immune system was probably holding it in check.
He never requested to treat me, or test me.
After two years, I went to him due to the "normal" blood tests I was getting, but the growing symptoms I was having.
THEREFORE...you can appear healthy, and still be infected. The bacteria can stick to the vessel walls with the biofilm.
Is that clear as mud?
Posts: 2903 | From AZ | Registered: Feb 2006
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I wonder how determinitaion of the bug is coming along.Any news?
Has anybody had any success treating it with anti - parasitic drugs ?
Gale
Posts: 268 | From europe | Registered: May 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I was wondering too. Maybe KS will come along, haven't seen her recently though. Maybe--since so many healthy folks test positive for bartonella, it's not really a problem until Lyme comes along?
Posts: 3528 | From US | Registered: Apr 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Its not unethical for a pathologist to speculate. Hes just telling you what he is thinking. I know if all I looked at everyday was samples and knew in my heart what was what I would tell you what I thought it was. But he is just a human being cut em some slack.Geez
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I haven't heard anything further regarding these smears although I'm not done trying to push things along (for whatever that may be worth). What I really want to know is whether these are valid, abnormal findings or not (versus non-viable artifacts or common findings in healthy populations.
I did make the investment to have a smear done myself. I'm not sure his findings at this time mean much from a therapeutic standpoint but it is data I will have in hand to push other doctors with (if mine comes back positive that is).
These things take too much time......
Posts: 561 | From mass | Registered: Jul 2007
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posted
Pathologists who have looked at my smear/blood said that it looks like microsporidia.However PCR for microsporidia did not confirm this.There are very many spp, so I dont believe that the negative PCR rules out microsporidia.Maybe we are dealing with a "microsporidia-like" organism (but still a parasite)
Infection with microsporidia is an infection known from immune-suppressed like Aids-patients.It has primarily been seen as a gastro-intestinal problem.But can be dessiminated.But there is no litterature ? about its prescence in the blood-stream.Treatment is very difficult-Albendazole. I have tried it for a short while without success.
I think this theory explains very much.As there are so many different microsporidia symtoms and treatment chances may be very different.However I think that the likely finding of microsporidia as a tick borne pathogene represents a milestone for Lymies, comparable to the finding of borrelia.
I do not think LLMDs would be the right place to go with this problem.An inf.med dept would be the right place.Until there is a precise determination of the bug,however, treatment options and healing chances are uncertain.Best thing would be to have a resourceful research lab work on the Identification and treatment.The mode of transmission of microsporidia also makes it a task for the CDC, I think.
From what people report Fry-labs still believes it to be a bacteria.However,they still havent reached a result.Information regarding their research is not available, and in consequence other labs cant work on bases of their partial? results-which would be an enormous advantage given that they are on the right track finding sequencies. We can only hope that some lab succeed in an identification.Until then, treatment would have to be empirical,without an ID this will be very difficult to persuade anybody to engage in.Hope everybody will chip in.Can one rule out the possibility that Microsporidia`s "closeness" to a bacteria is what Fry has found? (If somebody wants to post anything here dont let it concern my attitude to Frylabs.It is clear and negative but NOT the point and not the important thing to focus on).
BUT, mystery is still prevailing, unfortunately.Other theories about these coccobacilli have been put forward, and they also seem to be of dignity, and I may be partly wrong in my assumptions above.There might be other things at play ,also. What about?
If these buggers are what Fry is seeing (among other things) it does not exclude the prescence of microsporidia-, which is a far more serious matter.
Gale
P.S. I think people with a Bartonella Dx without a PCR confirmation should be aware of microsporidia as a possibility .I suspect that there is serological cross-reactivity to this bug and Bartonella.In my experience ABx is not good in this context.
PP.S about microsporidia
Although all infectious agents in humans are parasites, by convention, parasitic diseases are defined as those caused by protozoa or helminths. The old classification, in which a single phylum of protozoa encompassed all unicellular eukaryotic microorganisms, is no longer valid because of new ultrastructural and molecular taxonomic information.
For instance, Giardia lamblia has been shown to lack mitochondria and shown to contain ribosomal RNA sequences that resemble bacteria. These protozoa have been proposed to represent an evolutionary transition between prokaryotic and eukaryotic microorganisms. Both Giardia and Microsporidia (which also shares similarities with bacteria) have been reclassified as Archezoa, a term that reflects their evolutionary transitional nature. Clinicians can best classify unicellular eukaryotic microorganisms based on mode of transmission. (from e-medicine)
[ 07. November 2008, 08:55 AM: Message edited by: galehane ]
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