posted
the intention with this topic is to dicuss ways of making the medical community aware of the findings in Frylabs of Haemobartonella as a human infection. The purpose, of course, is to have the bacteria determined so that treatment can be found.
Up till now there is no effective treatment-nothing has worked.
Attempts to determine the bacteria have not been successful.Cultivation may take years (if possible at all).I dont believe that the tiny Frylabs can find the resources it takes to make that kind of research.
We need help.
Gale
[ 13. August 2008, 03:22 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
| IP: Logged |
3. my cousin, who is the Chief of XXX State Public Health Laboratories (in one of your US-states - don't want to say which one). He will see me in Germany by the end of August and I'll discuss with him what bug it could be and what we can do to raise awareness.
If I should get any replies or ideas I'll post them.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
| IP: Logged |
posted
I think it very important to use all resources available to get this Myster bug identified. I do not think Dr. F in Arizona has the resources to do it quickly.
That is why I sent my smear to the CDC and would encourage anyone who received a positive blood smear from Fry labs with the findings: Suggestive of hemobartonella or mycoplasma--to do the same. If hundreds of people sent their pcitures to the CDC, something might get done there. I know they have not been Lyme patients allies in the past, but they have the resources other doctors do not.
Bottom line is I have been on the this site for 4 years and have been ill for over 5 years. My friends who get diagnosed with lyme--even with late diagnoses--but do not have co-infections are well. They are out riding motorcycles, running, working etc.
We need to focus on this co-infection and give Dr. F some help. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10182 | From Illinois | Registered: Aug 2004
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Bartonella is very dependent on calcium.
Why can't you drink milk near the time you take tetracycline?
posted
I think this is an EXCELLENT idea!! We are all spending so much time spinning our wheels with regard to trying to make sense of these test results. What is the use of getting running these smears if we don't know what they are or how to treat effectively?
I plan sending a blood sample to Fry and if something turns up positive, I will be asking help from 2 doctors I've previously interacted with from 2 different 'respected' teaching hospitals in Boston. I think forwarding to the CDC is a great idea as well and certainly easy enough to do!
I think this is a way to really make a difference....
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
Just re-read your post....really like the idea of getting IDSA involved. Hey, if they don't believe it is lyme causing chronic infection, all the more willing they may be to help figure this one out. Maybe not but certainly can't hurt to try.
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I snail mailed a letter to Fry...and it was returned (unable to forward - yellow post office sticker).
posted
This is more of a helpful suggestion rather than a report on anything I have done -- but I'm so glad to read what others have done. I think this has to be a media issue first and foremost.
If anyone has media contacts of any kind, let's get more articles out there not just on Lyme but on bartonella specifically. It shouldn't just be an addendum on a Lyme disease article.
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
I also have these results: suggestion of mycoplsmosis or hemmobartonella with the picture. I had no idea this hemmobartonella whas different to treat that other bartonella, and i don't think my dr knows also.
I had thi picture and result and she didnt tell anything about that...
Don't really know what to think of this..
-------------------- Lyme-co infections Posts: 27 | From Canada | Registered: May 2008
| IP: Logged |
I don't understand the implications of your first post on this thread, but am interested. I checked both links, but I am missing your point.
Posts: 129 | From Virginia | Registered: Feb 2008
| IP: Logged |
You can call Fry labs from the number on their website. www.frylabs.com or google Dr. F and call his office if you want to talk to him. That is what I did.
What I can't figure out is how to get to someone more important in the CDC. My second e-mail went unanswered.
Ideas would be helpful, but meanwhile everyone flood the CDC with your pictures from Fry Labs. Fry Labs is a certified lab, so it is in no danger of being shut down. The CDC did not even know it had the proper certification. We need to educate the CDC and get them on board. They have the resources.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10182 | From Illinois | Registered: Aug 2004
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
There is also a professor at the Univ of Montana supposedly studying bartonella spp. I plan on sending mine there (if I get one). Also there's someone at UCSF apparently.
I like the idea of sending it to the CDC, the IDSA, and the NIH. If we ALL do it, they will be flooded and have to do something!
Does Fry have any suggestions?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
What about contacting Dr Burrascano and getting him involved?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
[ 12. August 2008, 11:53 AM: Message edited by: CD57 ]
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I somehow find it hard to believe that Lymenet could be patrolled regularly by the likes of McSweeg, recommended as a valuable resource by LLMDs and be affiliated with the LDA and yet the Federal gov't & the CDC would have no idea what is discussed here.
I could certainly be wrong, but I just suspect that it's unlikely that they are unaware of this finding on the Fry labs smears.
If I'm understanding what Marnie has posted, the calcium-binding would take away some of what Bart needs, thereby inhibiting it and giving some relief.
The second link would tell that only Gentamycin and Rifampin have shown bactericidal ability. Levaquin and ceftriaxone did not. I do not know if they interfere with calcium or something else that Bart needs, that they seem to have given me some temporary improvement, but they don't kill it.
Gentamycin seems to have the potential to cause some pretty nasty side effects. It sounds like it can be a risky ABX.
I believe Rifampin needs to be done in combo with other ABX to avoid triggering resistance in organisms with that propensity.
Has anyone here done a reasonable course of either Gentamycin or Rifampin?
Sorry Gale, I don't mean to sidetrack your thread. I'm just very interested in Marnie's post & wondering if I actually understand what she's telling us.
-------------------- 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 |
I find it hard to believe that a person without a very serious medical problem would dream of spending time reading about the incredible misery of people with vector borne infections, and and... in Lymenet. Why would CDC not be truthful about this.They wrote to me that they did not know(only 2 had reported anything) and that a lot of labs made money on highly questionable tests.Now is the time to put a stop to that kind of stupid attitude.
So send them a mail. Takes only 2 minutes.
yours Gale
P.S. yes I think the bartyonella discussion should be in another topic.
[ 13. August 2008, 03:13 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
| IP: Logged |
posted
If a couple people want to send me pictures of their smears (I haven't been tested via Fry yet) I would be happy to forward them to a couple good Infectious Disease doctors....the ones I refer to earlier in this post...
Let me know if interested and I'll be sure to share everything and anything I may learn.
Kristin
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
posted
I sent some pics of the smears to a professor in the ag department of University of Illinois. Basically he is not allowed to tell me anything about human blood, but did allude to the fact that there was something there and the CDC was wrong saying there wasn't. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10182 | From Illinois | Registered: Aug 2004
| IP: Logged |
posted
hi fannou is your smear pic quite new? if so they may have invented a new description in Frylabs.Please look at the smear photo in the other thread.Mycoplasmosis is new. Gale
Posts: 268 | From europe | Registered: May 2008
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Mine said suggestive of Hemobartonella or Mycoplasma Spp. also. Since I tested positive for Mycoplasma pneumonia by Elisa. I do have to wonder if that wouldn't be the "Hemobartonella/Mycoplasma" actually seen in my slide.
I have a feeling we went over this before. I'll have to go back and re-read the thread. I think some here tested positive for some Mycoplasmas but some were negative for all.
I wonder if they are seeing Mycoplasmas in the slides of those who are positive via other tests and perhaps only those who are negative for Mycoplasmas have the unidentifiable organism.
Did Fry say that it is definitely one SPECIFIC organism they are seeing on ALL slides with this reported finding, or are they saying that they can't really tell by the slide whether it could be ANY form of Mycoplasma or a Hemobartonella on any of them?
Is it just a broad "catch-all" reporting because they are unable to tell one from the other?
I'm sorry if this had been done before. I've just gotten back around to revisiting the possibilities here because I had gotten side-tracked.
OK - I finally decided to call Fry labs myself. It is a "catch-all". If I have Mycoplasma pneumonia that COULD be what they're seeing. If someone else has Hemobartonella, THAT could be what they're seeing.
The smear is not specific enough to specifically diferentiate Hemobartonella from Mycoplasma spp. From that reported finding, it can really only be determined that there is definitely something there, WHICH specific organism can't be determined.
You would really have to go further with other testing methods for Hemobartonella/Mycoplasma to rule them out and decide that it is not one of them.
I have tested positive for Mycoplasma pneumonia, so I guess it would be best for me to try to Tx for that & then maybe retest & see if it still shows up.
If it still remains unchanged, then I guess I should test for Hemobartonella & any other Mycoplasmas we may not have tested for that wouldn't have been addressed by the Tx.
Gale-
Have you ruled out all Mycoplasma & Hemobartonella through other tests already? I don't recall.
-------------------- 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 |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Whatever the organism is, why can't Fry labs culture it and do abx sensitivity tests, single abx and combo, to see what works in vitro at least? Classifying seems less impt right now than treating effectively.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
They can't say that it is all one UNIQUE organism that they are seeing.
From what I was told, it is impossible to diferentiate those organisms by this method. It is not a specific test and is for research purposes only.
It would be up to the individual's LLMD to isolate & determine EXACTLY what is being seen in each person's slide.
It could be different organisms in different individuals and needs to be taken further by our doctors.
They can narrow it down to a Hemobartonella or Mycoplasma. That's as specific as they can get in this test design.
-------------------- 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 |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm wondering now if our LLMDs would be able to tell us where to go to more specifically isolate it.
I have a feeling that it would be a much more expensive test, as it would likely require much more expensive equipment and be more time consuming
???.
-------------------- 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 |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I've got an LLMD appointment next week. I will most definitely question him about this.
I had another LLMD order this test (not my Txing LLMD), so I hope he will have some idea.
I think he'll probably want to pursue the M.pneumonia, but who knows maybe he'll be able to offer some different insight.
I'll let you know if I get anywhere with him.
I'll also ask about what it would take to actually isolate what is being seen. He's an ID, so perhaps he would know this.
-------------------- 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
So, a couple Lymenet folks were kind enough to send me their Fry Labs smears. I forwarded them to a very nice ID MD at a major hospital in Boston. Here was her response:
"Regarding the pictures, I consulted with some colleagues here who have more expertise than I do in reading blood smears, and the consensus was that the findings are not particularly suggestive of organisms.
In general, though, you probably know we are pretty wary of making diagnoses based only on the visual appearance of things under a microscope anyhow, so even if the experts thought these findings were suggestive of a pathogen, the mainstream medical/infectious disease community would be much more convinced if there were supportive data such as a nucleic acid test showing the DNA or RNA of these organisms in the patient's blood, and/or a serologic test showing that the patient is making antibody responses against these organisms.
That sort of evidence would support the idea that the organism is present in the patient's body.
To be convinced that this organism is actually causing the symptoms you describe would require another level of evidence--ie, that introducing the organism into a healthy host causes the symptoms, and that getting rid of the organism improves the symptoms.
So unfortunately I don't think these smears are very meaningful, although I do hope that someday there will be better understanding of the causes of these symptoms. I hope this helps."
I then asked her how we look for DNA or antibodies if we don't know what the organism is. Her response:
"Those are good questions. Yes, it's quite possible that there are pathogens that haven't yet been identified...there has been interesting progress in recent years in identifying more organisms...with current technology, it has become fairly common for people to do studies in which they isolate total RNA from someplace (like stool or vaginal fluid) and amplify stretches of RNA that are somewhat common to all living creatures (so-called ribosomal RNA) and then sequence these stretches and compare them to a databank of the ribosomal RNA from all species that have yet been identified in order to "discover" new species that haven't been identified through cultures or other methods.
The attached file is a commentary on an paper that was published a few years ago in which they used this approach to study bacterial vaginosis. I haven't seen anything about these sorts of studies using samples from patients with "chronic lyme" symptoms, but hopefully someone is working on it."
I know this isn't really helpful but think it is wise for us all to share what we learn...whether a popular response or not. Would be good to push Dr. Fry to run some 'RNA analysis". IF we don't get some answers here, I'm not sure there is much value in these smears. If we don't know whether it is debris in the smears or know the genus/species of the pathogen, we don't know how to best treat....I'm not convinced this is nothing so we should all continue to push...
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Oh boy.....so now we don't know if these smears really point to....anything? It could just be cell debris (what is that anyway)?
Why can't they differentiate between a tiny, organisms with no cell wall (mycoplasma) and a gram-negative rod shaped bacteria (bartonella)? Seems like they would be able to show that at least. I know that this is the best we have thus far.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I spoke with a doctor who specializes in Gulf War Syndrome. He's a retired professor of molecular microbiology and infectious disease from Boston University Medical School.
When I showed him the photograph he said he wasn't convinced that it was anything meaningful, but he also said, he wasn't convinced that it was to be ignored. He said a lot of research is presently going on for exactly this -- hemobartonella and Mycoplasma strains. He said both are being studied all over the country at various facilities under a research program.
He wouldn't tell me more, but did tell me that much.
-------------------- 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
hi only wanted- as friendly as possible- to remind posters that this topic is supposed to focus mainly at how to involve the broad medical community and in particular those institutions with enough resources to solve the problem.
But it is difficult to keep the things apart- so I`ll add my speculations too.Personally ,I have reason to believe that Fry is not even close in determining the organism, and that it is neither mycoplasma,haemoplasma,bartonella or haemobartonella.No treatment success with abx has been reported- so, another kind of organism? I believe it is about time to replace speculation with fact .For instance a doctor schaller has written yet another book about Bartonella basing his Bartonella theory on Fry`s smears. (Fry left that description of his smear findings six months ago).This kind of speculation has to stop now.But interesting that schaller reports no treatment success for what he calls Bartonella (now haemobartonella/mycoplsma according to Fry).Whe antibiotics does not work- are we still looking at a bacteria?? Unlikely
Gale
[ 25. August 2008, 04:13 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
| IP: Logged |
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)
Printer-friendly view of this topic