You are right about Clongen: they dont offer blood-smears any more.I think they only made them in connection with researcing mystery-bug. Gale
[ 02-21-2009, 10:01 AM: Message edited by: galehane ]
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oxygenbabe
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Bears, exactly who said this organism had a flagella?
I suspect this is like "telephone"-- the old game. A lot of speculation and a lot of misunderstanding and inaccuracy. (IE how does a highly motile organism that attaches to red blood cells at times (obviously if highly motile it's mostly swimming around) end up with "a biofilm"?
Etc.
Folks, it's a little risky to diagnose yourself and the presence or lack of organisms by symptoms...
This discussion on Clongen and Fry has been going on for quite a while, months, and for Fry, longer, and really---where has it gotten anybody? If the heads of these labs really care about these very sick people why aren't they calling in the CDC and saying this is an emerging or re-emerging infection?
Thus I question their motives. Do they want to put their stamp on some test, identify some organism, give it some new name, and make lots of $ off sick lymies by charging hundreds of dollars for this test?
It's a cynical question but one that should be asked, at least.
If there is an unidentified, disabling, new organism, and they are not calling in the CDC, what's up?
Or, maybe its an artifact, or an opportunist, and not big news...
Is there a new treatment protocol?
Does anybody know what the organism is or have any clue?
There is never any real news, as far as I can see, nor any new treatment protocols that work.
No.
[ 02-21-2009, 07:38 AM: Message edited by: oxygenbabe ]
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METALLlC BLUE
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OB I've been thinking the same thing. I have no new ideas myself given such little information is available, however I will say I ran the test with Fry and of course the smear indicated this same thing was present.
The only objective testing that has demonstrated problems was Positive Igenex WB IGG and IGM, a positive WB for Rocky Mountain SF thru Quest. Severe mold exposure (Stachybotrys chartarum), as well as Chlamydophila p.
So I had these things when I tested with Fry, but all Fry saw were those tiny dots that everyone else is seeing. There is no new information.
-------------------- 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.
oxygenbabe
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You had poison mold exposure, MB? How did/have you recovered from that? PM me if you want to discuss.
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I reported previously that Dr K at Clongen told me personally that the CDC had been in contact with both his lab and the Fry Lab. None of us know what is going on behind the scenes so to speak.
Metallic,
Lyme, Rocky Mountain Spotted Fever and Mold I think would not be expected to show up in a bloodslide. Not sure about Cpn.
Bea Seibert
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oxygenbabe
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Bea, forgive me if I'm not too impressed with Dr. K's report that the CDC has "been in contact."
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adamm
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Oh--the Center for De-Cephalization got to these guys. No wonder we don't have an ID on the organism.
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METALLlC BLUE
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OB, yeah my numbers thru quest were thru the roof. I suspect the problem is from years of poor bathroom ventilation, as well as air conditioners which were never cleaned. I resolved the bathroom issue last year, and replace curtains more often now. About every 3 months. The big issue was that I simply didn't know air conditioners required mold-care every year or two.
They are breeding grounds for mold -- big time.
Diflucan is the drug my physician is prescribing for the mold exposure. 200mg for 10days, possibly longer if necessary. It should clear up the issue pretty quickly. I haven't treated it yet, waiting until this week. I think I will respond well.
Bea, yeah I didn't think it would show up. I didn't even know I had it until this year. I was surprised it showed up so strongly on the Quest testing.
-------------------- 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
Skeptics about Frylabs and Clongen and many others are everywhere. There are a lot of false reports coming from all labs...whether it be proper identification of "infection" or correct diagnosis.
Negativity arises from years of misdiagnosis, failure to achieve a "symptom free" status, home problems, work problems, money problems...etc and this is a great place to vent. A person can get on this website and "mouth off" to others will little or no reprucussion. Negative people very seldom "get well" and thus "try" to bring everyone else down to same level. In my own opinion, I think it is a disgrace to mankind and fellow "humans" for people to be so "selfish" in that sense.
If I could post more on what I know...I would. I know directly from the source, face to face, what this "animal" exactly is. My blood was drawn "specifically" to do more testing.
I posted because I wanted to give everyone "hope" - not false "hope". I want everyone to believe that there is hope. Without hope life is meaningless.
oxygenbabe
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Oh okay. Now we're into the "you're negative because you question something and therefore you never will get well" accusation that surfaces on these boards every so often.
Or the, "Your approach is hurting people and you should not raise such questions. They need their hope."
Hope needs to be reality-based.
Who am I? You can PM me, if you want more info.
Posts: 2276 | From united states | Registered: Jun 2004
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"Negativity arises from years of misdiagnosis, failure to achieve a "symptom free" status, home problems, work problems, money problems...etc and this is a great place to vent."
You're right about all of this. Plus, we are dealing with a population of people with seriously infected brains (not me, of course), many of whom suffer low levels (or not so low) of parnoia, rage, etc., brains that shift from hour to hour, and with each surge of hormones, meds, chemical exposures, or neurotransmitters.
Many Lymies will tell you the sky is black just to be difficult. Then spend all day the next day dwelling on it, wishing they hadn't said it. And the day after that sure everyone is talking about how stupid they were for saying it. Then the day after that wondering what the fuss was, feeling just just dandy.
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bears1985, whatever direct information that you could share regarding the flagella of the bug would be appreciated. Apicomplexa are highly motile, but generally do not have flagella, they exhibit gliding motility.
Human eukaryotic parasites that do have flagella are typically larger than what is seen (ie. larger than the typical 8um erythrocyte) and are not really rod shaped.
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kelmo
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We go to the doctor who has the lab. It's a very small office, there are no grant monies available to map the organism.
They are building their case, and when they have everything verified, and due processed, they will bring it to the attention of the major organizations.
The practice is not getting rich off this research I can tell you. It's bare bones. There is a heart of concern to truly help the sick.
I have watched this develop over the past 3+ years. It took 17 years for the doctor who discovered H. Pylori to make it public.
This isn't a movie, it's real life, and the politics involved are becoming more difficult to navigate.
How much money did people send to Columbia for Dr. Fallon's Lyme Research? What have you seen come out of it? If I had invested my hard earned $$ in this "research", I'd be demanding more results. But, research takes time, correct?
My daughter's life depends on what Fry Labs finds. We are sticking it out and supporting the process. I believe in it.
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CD57
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I find this interesting. Kelmo I believe you said that your daughter does not have Lyme, but rather this organism. And Bears, you too, may not have Lyme?
I find this very interesting. Does anyone else see the ramifications? Many "Lyme" patients really could have been mis-diagnosed if this thing is pathogenic.
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You state "If I could post more on what I know...I would. I know directly from the source, face to face, what this "animal" exactly is. My blood was drawn "specifically" to do more testing."
Just to make it crystal clear- You know but must not tell?
Gale
P.s. My blood was drawn too for research.Was told that pcr showed bacteria.This has not been confirmed by other labs
Posts: 268 | From europe | Registered: May 2008
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I, too, am positive for the "highly motile" mystery bug through Clongen.I tested at the beginning of January, so I guess I dodged the cut-off. I have only ever had the infamous band 41 show consistently on WBs. I had a positive babesia. I have been treated/am treating for lyme, babs, and bart. And yet I still have some really lousy symptoms. I need to think there is cause for optimism and that we can channel all these random bursts of manic energy we all get (LOL) into some positive activism. Anyone else positive for the bug who wants to pm me, please do. I am very curious about others with these findings.
Kris
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oxygenbabe
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Kelmo, you said: "My daughter's life depends on what Fry Labs finds. We are sticking it out and supporting the process. I believe in it."
Why are you convinced your daughter's life depends on what Fry Labs finds? What exactly do you expect Fry Labs to do to save her life?
To the others who are convinced they don't have lyme--do you think you had tickbites or tick exposure? We know testing is poor because it is antibody testing based on bb sensu strictu and it is simply unreliable. Babesia testing can be poor too, but Micul posted photos he/she took of his/her own blood, learning simple microscopy, which showed the maltese cross in a few cells. My former hyperbaric doctor did the same--got a decent microscope, learned microscopy which was not too hard, and found the maltese crosses in both her and her daughter's blood.
As for Marshall, he didn't discover h. pylori, he proved it as the cause of ulcers, and it took a long time for the medical establishment to agree. This is different than suggesting you have discovered a new bug--than two small labs saying they have discovered new bugs which sound different, and apparently may be the 'missing link' in chronic lyme but which they are having a heckuva time identifying, even generally. From postings I saw, Fry thought it was "bartonella like". From postings I saw, Clongen thought it was a gram negative motile bacteria but now doesn't even know if it's a bacteria at all.
And hey why hasn't anybody considered an unidentified virus? Wouldn't that, immunosuppressant and persistent, make more sense? The clinical picture of months and years of heavy duty IV and oral antibiotics and antiprotozoals in ever-changing and inventive combinations *not* getting people well raises my suspicions that a virus is more likely involved and as yet unidentified.
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kelmo
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<As for Marshall, he didn't discover h. pylori, he proved it as the cause of ulcers, and it took a long time for the medical establishment to agree>
Worded more correctly, thank you.
My daughter's life depends on the research he is doing because I believe he is heading in the right direction.
She, and I, have never tested positive for Lyme. We did visit Oklahoma every summer for 20 years, and 90% of the cattle are said to be infected with Bartonella. Mosquitoes ate us alive.
As you know, with testing, that doesn't mean much. We don't use Fry labs for western blots, we use our insurance carrier due to cost issues. So, our results in that area are no better than anyone elses.
What I know is this doctor has been working on this long before the word made it to these boards. This has been a quiet search that other LLMDs have promoted. Not Dr. F.
We found him over three years ago when he was doing all his labwork himself. He doesn't charge the horrific fees that I hear other LLMDs charge, and he takes most insurance. You can walk in his clinic any day and be seen.
It could be a virus! But, he describes it as a cross between bartonella and mycoplasma. He always believed it was a BLO, but recent DNA kept coming up slightly different. I'm not a scientist, I am only relaying what I've been told.
My only reason in replying to these posts is to tell everyone to have patience. Everyone is sick and wants answers yesterday. It breaks my heart to see my daughter's life slip by, enduring pain and illness. She has improved, though.
There are one or two people out there who are seriously, quietly, working to help us. Let's not sabbotage them with attacks and accusations.
If you don't believe in what they are doing, look the other way. What they are doing isn't costing you anything if you aren't partaking in their services. No government tax dollars are being wasted. No harm, no foul.
In the meantime, we work toward remission. Isn't that the best hope we have for the present?
Let those trying to unravel this mess get on with their work.
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oxygenbabe
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Hey Kelmo, you make a good case for patience. But just hope you don't put all your hope in Fry identifying a bug he has found. It may be opportunistic, it may be an artifact, it may be only partly relevant. That the bug he sees (which sounds different from descriptions anyway of the bug Clongen sees) would be the mystery answer to tickborne illness...is unfortunately not so likely. I think it would be nice of course.
By saying it could be a virus--I don't mean that what Fry is seeing, if he is seeing it, is a virus. I mean that nobody is testing the ticks for viruses! Eva Sapi didn't have the technology to do so. But some places do.
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i opened t his thread not expecting to read a lot of debate amoung folks (who are all ill in one way or another or so i thought with this site)
however, some info here does make my wonder and will go read some of bea's previous posts. When i was finally dx as lyme and co. doc asked did you ever have a time you were so sick you had to be hospitalized.. asking due to very high RMSF igm titers..going back yes, infact i did and this was now 11 yr ago. got very ill, was in final semester of nursing program, had final that you can not miss or repeat whole thing (NO THANK YOU) so took my final, friend drove me home with temp of 104 and hubby had to literally carry me into er Was dx as renal failure at hosp one, and thank god my ins. demanded i be moved to the medical center due to contracted hops rates with st lukes and then learned that had bilateral pneum that had done a nuber on my lungs and caused L kindney to stop working, spend 10 days on heavy meds and pain meds (morphine, dilaudid) and sent home with picc line for vanco. picc line went bad as vien spasmed aroung it...so dx was step pneum and pre-renal failure due to severity of pneum and dehydration..ok..moved on and didnt think much of it
few yrs later and i am having strange symptoms going on, get sent to multiplue doc s and have lymph node biopsy done for "we thinks it is lymphoma"--- heres the part waking me up now...doc put specimen in formulin instead of sterile saline BY MISTAKE..results came back as gram postitive rod, stained took in simialar manner as TB. so..off to ID doc i go, no doc had any clue as to what it was they were seeing but i did get TB ruled out (i am a nurse, so exposure is there for TB and tons of other t hings)..then had repeat biopsy this time with good surj and was put in formulin and looked at/and stained differently...still is sm. gram bacteria of some kind, not able to id as know so must just be artifact or immune response change causing granuloma type formations in lymph node.
So, i got the pat on the back, its not cancer or TB, really not sure what it is so must not be important??? i dismissed this and went on with my life, very glad was not cancer...and just found out we were expecting again...then after pregnancy everything flares again this time worse and with more symptoms..got tx by rhumatologist up until this sept for lupus/chrons symptoms and yrs of heavy immunosuppression. s
so now i really wonder about those lymph node biopsy's as this was 9 yrs ago (son is 8)..
so, no lab doing smears..how could i find out if mystery bug is part of prob???
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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You could have Fry Labs do a blood smear. As far as I know they are still doing this. They just don't know exactly what the organism is that they are seeing.
Not sure if the pathogen seen on your lung biopsies could have been mycoplasma pneumonia or not?
Sounds like you have really had a rough time. Hope you have found a good LLMD.
Bea Seibert
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kelmo
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Oxygen, I'm not pinning my hopes on this organism. Actually, I'm not as concerned about it since he's treating it with all the current abx we have anyway.
It could be a virus, that's a strong possibility.
However, I can couch that with saying that my daughter has improved in a myriad of ways in the last three years of abx therapy.
She was autoimmune, now she isn't. She couldn't use her hands three years ago,couldn't attend school, now she is in her fourth semester of sign language studies.
My concern, oxygen, is that people in their impatience will put the hammer down on a small doctor, who is working hard, and is my only lifeline to treatment in our State. I don't want to lose him because of this issue.
I've had this discussion with Galehane, don't attack this little doctor who is trying to do a big thing for us. Even if he identifies it, maps it, reports it, the cure for it could be a long time from now.
I saw on the news that at ASU, a professor was given a grant to develop a vaccine for pneumonia using the salmonilla bacteria. He's making headway in this, but his funding will be cut.
So, our doc is using his own money to do this work. This may take a while.
oxygenbabe
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Okay, Kelmo, you are right and for the sake of your daughter's health alone I will try to remember to hold my tongue! Posts: 2276 | From united states | Registered: Jun 2004
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I am no microbiologist, but the bug is almost certainly not a virus. Not only is the reported size off, virus are not motile. Motility requires energy, and viruses do not produce or consume energy independently.
Viruses are about 20-400nm in size, nanobacteria are about 200nm in size or less. Microscopy using the visible light spectrum (both brightfield and darkfield) is limited to about 200nm resolution, so objects are just not clear enough to make out at that size.
I am making the assumption that since the bug is seen adhering to the margins of erythrocytes it is smaller than 8um, the size of the average RBC.
Another assumption that I am making is based on the information from LymeMDs blog about Clongen not being able to amplify the DNA of the bug with PCR despite using various bacterial primers. That leads me to believe that bug is eukaryotic, not prokaryotic (bacterial).
There are several parasite infections that fit those criteria which are in a group that share some traits (Apicomplexa). Malaria and Babesia are part of that group but can most likely be ruled out. Toxoplasma gondii is also part of that group, and it is not an uncommon infection, but it is usually asymptomatic unless a person has a compromised immune system.
The part that does not fit is the assertion that the bug has a tail (flagella). I do not believe that the form of T. gondii found in blood has a flagella, so that guess may be completely wrong as well.
If anybody has contact directly with Dr. Fry or Dr. K from Clongen please ask them if they have contacted the T. gondii reference lab at Palo Alto medical foundation in relation to the bug.
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I could be wrong, but from my reading I thought the word "motile" applied to bacteria automatically implied a flagella(s)
Don't know if the Trichrome stain would rule out toxoplasmosis or not -- need to research that.
16S DNA sequencing is not the only way to identify bacteria -- there are newer more advanced techniques that are most likely only available to large research labs such as Universities -- this is why we need more money for research.
I do think that ticks probably carry more viruses than are commonly recognized, but I still think what Clongen and Fry are seeing is a bacteria -- just don't know what one yet.
Bea Seibert
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kelmo
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Thank you, O2 Posts: 2903 | From AZ | Registered: Feb 2006
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oxygenbabe
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I don't think *these* bugs Clongen and Fry are talking about are virii, I'm suggesting that an unidentified virus in ticks might make a lot more sense for chronic cases. Along with Bb it might be highly immunosuppressive, sustain itself for long periods, and allow opportunistic coinfections.
Yes it would be nice to know if anybody saw a flagella, nobody directly said that--only motile. There are other ways to be motile than tails.
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Bea, I just can not find any real info on the Gomori Trichrome stain for T. gondii. The positive Wright stain is consistent with T. gondii though. The specifics of staining results for T. gondii is beyond what I am going to be able to find.
I still have to believe that the bug is not a bacteria, based on the assumption that Clongen did not get a positive PCR result using a universal bacterial primer. I think a parasite is more likely.
If the bug is consistently in your husbands blood draw, then PAMF can answer the T. gondii question for certain I think.
If some of the mystery bug is really T. gondii, that would be good news I think. T. gondii can be tested directly with PCR (no WB interpretations necessary) and toxoplasmosis is treatable with pretty well defined protocols it seems.
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