LymeMd has posted that Clongen has been unable to identify the "mystery bug".
I had been more or less expecting this result from discussions with Dr K at the lab.
Hubby's LLMD is still convinced that Bart treatment is the best route to go. I don't totally agree, but without an ID of the bug we are kind of on our own.
I posted a couple of suggestions for the lab to pursue. If anyone else has any ideas I suggest they post them on LymeMD's blog also.
Bea Seibert
Posted by oxygenbabe (Member # 5831) on :
Strange. What can one make of a bug that only Clongen lab finds but they cannot grow out on any medium?
I'm totally confused. Maybe it's ultimately an artifact? Or perhaps its an intermediate stage of a bacteria? Or microsporidia?
What do you think, Bea?
Posted by lou (Member # 81) on :
Very few bacteria can be cultured.
Posted by seibertneurolyme (Member # 6416) on :
I think it is a bacteria of some sort. Not surprised that it can't be cultured though.
Was hoping the lab could do the DNA sequencing -- when you read journal articles about new bacteria they someitmes say something like -- bart species A shares 95% of the DNA of bart species B. I was hoping that the lab could at least say that it was a close match to some known bacteria.
Dr K at the lab has told us several times that the patients who have the mystery bug are all very sick so I do think it is pathogenic.
As I think I mentioned once before -- he also said that some patients have both an extracellular bug (this is the one hubby has) and an intracellular bug. I was hopeful that at least 1 of the 2 pathogens could be identified. It does make me wonder if the pathogens are possibly different forms of the same bacteria.
Not all patients have these mystery bacteria -- don't know what percent of patients. At one time Dr K mentioned that he had at least 30 patients with one or both bacteria, but my guess is that this number is much higher by now.
I think at this point we need to find some more curious microbiologists -- especially ones who are into research and ones with electron microscopes.
If anyone has any contacts please let me know.
Bea seibert
Posted by seibertneurolyme (Member # 6416) on :
I think nanobacteria is a reasonable possibility. Would explain why mino and EDTA might help.
Bea Seibert
Posted by kelmo (Member # 8797) on :
Bea...hasn't Fry Lab been in this process for a few years? Fry is in the process of getting it mapped.
He just hired a new lab tech who is pretty savvy.
Actually, it was Fry who informed Clongen of the testing he does and they launched their own test based on his research.
So, Fry is still pursuing this mystery bug. He can only go as fast as the funding comes in. His own expense.
Posted by seibertneurolyme (Member # 6416) on :
Kelmo,
You do have a point. However, neither Clongen or Fry is sure if they are actually seeing the same pathogen. The 2 labs have talked, but aren't necessarily in agreement.
Hubby is actually doing pretty well right now -- we are using some of the treatment ideas Dr F has suggested and some ideas of my own. Just not sure if we are on the right track or not.
Will know in the next month or two if hubby's anemia improves that something is finally working. LLMD thinks his red blood cells are fragile and the hemolysis is causing low RBC, low hematocrit and low hemoglobin and elevated bilirubin. Hubby only had the extracellular pathogen per the Clongen bloodslide, but something seems to be actively destroying his red blood cells. He no longer has babesia symptoms so we don't think that is the problem.
It will be interesting to see if his bloodwork changes to reflect the way he is feeling.
Bea Seibert
P.S. Any idea when any of Dr F's work will be published -- obviously the rumour about the first of the year was wrong.
Posted by adamm (Member # 11910) on :
Scariest thing I've read in a long time.
So is this a common denominator among patients who don't improve on any treatment? Should you just give up and go dig your own grave if you have this? If it were a bacterium, I take it that it would be the only one known that doesn't react with the primers they're using....
Well, whatever it is, it's probably a weapon of some sort... maybe an inorganic nanomachine?
Posted by Hoosiers51 (Member # 15759) on :
Are there any updates about the patients that are treating it with minocycline and EDTA? Are they improving?
Posted by oxygenbabe (Member # 5831) on :
Bea, if you're feeling bold, contact Ian Lipkind at Columbia. He has a 6,000 sq foot lab. He id'd West Nile years ago. If you somehow got him interested he'd figure it out.
Posted by scared08 (Member # 14695) on :
I was thinking the same thing but I didn't know that any detailed info. I was just thinking that contactinc Columbia Unversitly would be a good idea!!!!
They are already doing a lot of reasearch on Lyme & Co. in differant areas. If you can get the attention a good pathololist, or I can't think of the name of the other (I'm so sick now, I'm sorry) but a challange like this I'm sure they would welcome!!!!
I wish you the best; you know what to do, just keep persueing it!
Posted by Gabrielle (Member # 5329) on :
quote:Originally posted by seibertneurolyme: I think at this point we need to find some more curious microbiologists -- especially ones who are into research and ones with electron microscopes. If anyone has any contacts please let me know.
Bea,
Seven people from Europe (including myself) with the Fry mystery bug finding sent their blood to a big German State Research Lab that is specialized in vector borne infections. The chief is a microbiologist and they have all the means there including an electron microscope.
The chief of the lab felt that it was microsporidia but all their attempts to prove this by PCR's failed. They were not successful with the electron microscope either.
Bea, as you speak to Dr. K sometimes: would it be possible to ask if these bugs could be micrococci? Because if yes, then wouldn't it be possible that that we have the same bugs that the Italian veterinarian Tarello had?
Chronic fatigue syndrome (CFS) associated with Staphylococcus spp. bacteremia, responsive to potassium arsenite 0.5% in a veterinary surgeon and his coworking wife, handling with CFS animal cases.
Chronic fatigue syndrome (CFS) in human patients remain a controversial and perplexing condition with emerging zoonotic aspects.
Recent advances in human medicine seem to indicate a bacterial etiology and the condition has already been described in horses, dogs, cats and birds of prey in association with micrococci-like organisms in the blood.
To evaluate the possibility of a chronic bacteremia, a veterinary surgeon (the author) and his coworking wife, both diagnosed with CFS and meeting the CDC working case de�nition, were submitted to rapid blood cultures and fresh blood smears investigations.
Blood cultures proved Staph-positive and micrococci-like organisms in the blood were repeatedly observed in the 3-year period preceding the arsenical therapy, during which several medicaments, including antibiotics, proved unsuccessful.
Following treatment with a low dosage arsenical drug (potassium arsenite 0.5%, im., 1 ml/12 h, for 10 days) both patients experienced complete remission. At the post-treatment control made 1 month later, micrococci had disappeared from the blood, and the CD4/CD8 ratio was raising.
Gabrielle
Posted by oxygenbabe (Member # 5831) on :
P.S. Bea I'd rather post ideas here.
LymeMD seems erratic in this behavior of posting this call to arms to his readers to "save him" and then removing the post which had 35 replies, and replacing it with an innocuous post. He did that previously--one morning made two long posts about the investigation, to which I answered, then removed them later. This seems somewhat unstable to me.
I don't think he's the right place to be posting ideas, and it's better to deal with Clongen directly, and have them contact someone like Lipkind if they're willing (maybe they still want the "fame" and will keep trying).
[ 02-11-2009, 08:02 AM: Message edited by: oxygenbabe ]
Posted by asus (Member # 13881) on :
Staphylococcus spp. should be culturable though... I'd think. Whether its resistant to all antibiotics and needs potassium arsenite (as this article states) is another issue. IIRC they can't culture this bacteria using normal methods.
Posted by tcw (Member # 15698) on :
Bea, first off I am glad to hear that your husband is doing a bit better.
Can you confirm why Clongen could not run the sequence? Was it an issue of getting enough of the bug together to run a sequence, or did they run the 16S sequence and it failed to amplify anything?
Not being able to culture something probably is not surprising, but if the sequence shows nothing what do you have? Is this some type of novel eukaryotic parasite? My understanding is that the 16S sequence would amplify any bacterial rRNA - so if it fails, the agent is not a bacteria of any type.
Posted by seibertneurolyme (Member # 6416) on :
tcw,
All I know is what was posted by LymeMD. I am waiting a couple of days before I call the lab until the dust settles a little.
My understanding is that the sequence does not match any known bacteria. I don't know enough about the actual lab techniques involved to say whether or not it is actually a bacteria.
The initial tests done on hubby showed it to be a gram negative bacteria and the intital testing was negative for parasites.
I do plan to follow up with Clongen and any other leads I get.
Bea Seibert
Posted by suki444 (Member # 18960) on :
Hi Just wanted to chip in and say our UK LLMD uses Tarello's technique of darkfield microscopy and sometimes sees micrococci and staph in patients blood - but only in some.
More often in Lyme/CFS patients he sees the filarial worms, borrelia, c.pneumonie and sometimes bartonella and/or babesia like ring forms.
Emma
Posted by LymeCFIDSMCS (Member # 13573) on :
What does EDTA do? I know it more as a metal chelator. Does it actually kill bugs and which ones?
Posted by oxygenbabe (Member # 5831) on :
Bea--when you do talk to Clongen we're all looking forward to more info. Thanks!
Posted by louisep (Member # 17272) on :
Hello Bea,
I have been following your story as I have symptoms similar to your hubby's only not as severe. I tested positive for the Fry bug last year.
Can you tell me what treatment suggestions Dr. F has made that you think may have recently helped.
In your hubbys Fry blood smear do the extra-cellular bacteria show up as black dots attached to the red blood cells?
Do you think the new bug can be seen under a darkfield microscope? The reason I ask is because I went to a LLMD last week who looked at mine and my partners blood under a darkfield microscope.
We could see organisms on the screen he said he thought were Lyme. Mine were triangle and dumbell shape and my partners were like strings of pearls 8 or 9 molecules long (but much smaller than the blood cell I think).
The information on nano-bacteria and EDTA treatment is extremely interesting to me because this links Lyme disease and prostatitis.
I have been suffering from chronic female prostatitis (urethral pain) for the last 6 years - this is where my problems started. I have a continual low grade fever. I have digestive system problems and other symptoms that could be due to Lyme or could be due to this other bug I guess.
There has been some research done recently on men with chronic prostatitis showing an improvement in symptoms using EDTA rectal suppositories and tetracycline. The theory being that this antibiotic works on nano-bacteria in the biofilms.
I don't have fatigue but I did test highly abnormal for all the neurological antibodies on the Lyme Panel C test which I think you said your hubby did.
Glad to hear your hubby has been feeling better recently,
Louise
Posted by bears1985 (Member # 17271) on :
There is a reason that Clongen cant find the pathogen. There are patents on how the bug can be found...and if they can't find it another way, they wont find it. It wont be long before this pathogen is made known to public.
Posted by seekhelp (Member # 15067) on :
So once again it's all about the money?
Posted by seibertneurolyme (Member # 6416) on :
Bears,
Are you saying that F Lab has a patent or someone else? What are you basing your statement on?
Bea Seibert
Posted by galehane (Member # 15437) on :
bears1985
I hope I can write the following in a non- offensive way. 1.People who have this mystery bug are very sick 2.Whether this bug is the culprit remains to be proven, but many people are waiting desperately for solid information regarding this organism. 3.Over the past years news about the organism has come from Fry himself in radio-broadcasts etc , but mostly from his patients. 4. The information has gone from nonsense/speculation about the nature of the pathogene(mycoplasma, bartonella,heaemobratonella etc etc),to numerous rumors that scientific reports would be released next month,public grants were finansing the research,various university labs and gene-mapping companies were involved,it was a bacteria (betaproteobacteria) that could be cultured on argenine only and statements that there is a patent now-or is it just applied for?.(if a patent is in place everybody would be able to have a look). 5.So, in light of the negative effects of the long list of incorrect information (people have been treated with tons of ABX for kinds of bacteria that werent there) regarding this bug I think we need to be careful not to add to the confusion.To me your statement can be read in two ways.1.You have a detailed knowledge of the bug, and why it is not possible to identify it the normal way through cultivation,pcr sequencing etc.If that is the case- why not share? 2. OR you write this, because you have obtained the information in this form.
So,could you tell us a bit more about the sources for your information? Gale
[ 02-19-2009, 12:37 PM: Message edited by: galehane ]
Posted by treepatrol (Member # 4117) on :
seibertneurolyme your mailbox is full.
Posted by bears1985 (Member # 17271) on :
First - I am not here to cause confusion. I have been NON controversial for a long time. I TRY to be supportive on a few Lyme sites. I am in the process of going back to school to either be a medical researcher or a physician's assistant.
I feel like this site and other sites are very harsh and unfair in their perception towards Frylabs. Besides Clongen, there is not any WELL known research labs that are making any progress for us. To see such negativity about information that is second and third hand, I am just tired of reading.
Frylabs have an accurate way testing the RBC's, with their smears, to detect any pathogens that could be affecting RBC's. If our RBC's are affected, our whole body is comprimised. Maybe I shouldnt post here anymore, because I really dont understand the pessimism that encompasses some of these discussions. It personally gives me hope and faith that MANY people will get better and have great quaility of life.
Frylabs has worked very diligently for years to get the opportunity they have been given and they deserve their chance. If this was some simple "bacteria" why are not all well? Why is it so difficult to get out of our blood? Some people have never had this show up in their smear, but that doesnt mean it is not there. Frylabs have a patented DNA smear that can detect if is still in the body.
I hope Clongen finds a way to see the pathogen and I hope they come up with a cure. If not someone else will.
So...I really have nothing else to say about this. I am leaving no confusion, but hope that soon we will all have a chance to get well and feel possibly better than we ever have. For those who dont believe...that is ok too. Without hope there is no reason to take medicine, to go the doctor or to be on this forum.
Posted by lymielauren28 (Member # 13742) on :
Well said Bears.
Lauren
Posted by galehane (Member # 15437) on :
BEars Do you know if it is a patent that has to do with staining/coulering the blood smears? (or like immuno-histochemical testing) Gale
Posted by oxygenbabe (Member # 5831) on :
Bears, it's not that people don't want hope. It's that you were so vague in your original post. You didn't mention who had the patent, and/or what "soon" meant. Most important, is how to treat it. So it appears you're saying Fry Labs has the patent and will reveal the bug soon. Specific information is helpful. What is "soon"? And does Fry have a treatment that has proven effective?
Posted by Ticktoxic (Member # 6876) on :
Thanks a lot Bears! The info is greatly appreciated. I think that most of the people have been positive and hopeful about this. It has only been a few that have been upset and negative...mainly just one. Please try to ignore her if you can.
Posted by seibertneurolyme (Member # 6416) on :
Bears,
Thanks for clarifying your statement.
It is my understanding that Fry does have a patented stain that he uses on his blood smears.
However, Clongen can see their "mystery bug" on a wet mount smear without any stain. It also shows up on a gram stain as a gram negative bacteria. Thirdly it shows up on a Wright stain.
The problem is not one of not seeing the bacteria -- the problem is that the visible bacteria can't be identified.
I guess this is one of the reasons the 2 labs are not sure if the bacteria is the same one or not -- I don't know if Fry Lab can see the bug without using their patented stain or not?
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Hubby just got off the phone with both labs.
The lady in the lab at Fry said that he has written up his research, but she didn't know when it would be published and wasn't sure what journal it would be in.
The lab is still in the process of testing their PCR test for the betaproteobacteria -- anticipates that the test will be available within a year.
Also, Fry Lab has temporarily stopped doing the genus PCR tests for Babesia and Bartonella.
Per Dr K at Clongen, he will be attending 2 medical conferences beginning Sunday and will not be back in the lab until after 3/17. Hopes to consult with colleagues and have some new ideas on how to proceed with identifying his "mystery bug" at that time. Hubby did suggest the possibility of nanobacteria to him.
So it looks like we are going to have to be patient for now.
I am following up on some other research avenues and will post if I get any promising leads.
Bea Seibert
Posted by tcw (Member # 15698) on :
If Fry has a PCR primer for what they are seeing and Clongen shows no results for various bacteria primers, it seems pretty likely they are not seeing the same thing. Nanobacteria seems unlikely - the size and motility seems to rule that out - can somebody confirm that?
I do hope it is a bacteria, but the Clongen PCR testing and persistence of the bug in abx treated patients makes it seem less likely. Persistence in patients treated with macrolides and atovaquone (Mepron) and the bugs motility makes some new Apicomplexa (malaria, babesia, toxoplasma) less likely also.
Posted by tcw (Member # 15698) on :
After a little more research I am not so sure about Toxoplasma gondii - has anybody with positive results for BLO sent a specimen to Palo Alto medical foundation for testing? They are the reference lab for the CDC.
The size, morphology and motility of the bug seems like a close match to the tachyzoite form of T. gondii. Symptoms may match to some degree also - chronic encephalitis and spastic paralysis occur in some cases.
Toxoplasmosis is most symptomatic in immune suppressed people, seems like some of the sickest BLO patients fit that bill also.
Posted by oxygenbabe (Member # 5831) on :
I think, tcw, that you make a good point, which is immunosuppression.
I don't think it's that likely, if this bug *is* identified, that it will turn out to be an unknown, heretofore unidentified, primary cause of refractory tickborne illness, and that once identified, a magical antibiotic will wipe it out...
Many chronic lyme patients have been on multiple antibiotics and antiprotozoals.
I don't see this as the next great white hope. It is more likely, since found in the sickest patients, an opportunist.
Sure, it would be nice to be wrong and to have a simple answer.
Posted by bears1985 (Member # 17271) on :
I sometimes get confused with some theories here? Bartonella and other species of this species, are killed with macrolides-easily. According to many doctors...Chronic cases of Lyme are killed with 8 months to one year of antibiotics. Babesia can be tough, but can be eradicated. So what is left? Is an organism attached to our RBC's normal? Why do some people get well and others dont? We can be skeptical and think that we are just full of opportunistic infections and Lyme is the true cause. A perfect example is this...I have only been positive to band #41 for 2 years now. I have and still have symptoms-even after heavy antibiotics. #41 refers to a "flagella like organism". This organism that Frylabs is finding has a tail and a biofilm. I have elevated monocytes and LDH...and have for 1.5 years now. Never goes away...so what is my body fighting? I do not have cancer or some other type of serious disease? I think everyone forgets about TB, Polio, Measles, Mumps, Hepatitis B, just to name a few...that had devastating effects on society and were probably, for the most part, blamed on genetics or other illnesses.
It would be nice to know what the pathogen is and why it is on our RBC's. We will know soon and will find out if this is the core problem or not. Why are so many people getting better on Biaxin, Roxi, Zithromax and an anti-malarial...Mepron, Artemesia and Plaquenil? Macrolides cover almost every bacteria, but in protozoans...they inhibit the protein synthesis. There is a reason why this combo is helping so many people, but there is a reason why we are still sick.
Posted by oxygenbabe (Member # 5831) on :
It's just *my* theory, Bears. First of all, I think even healthy blood and cells may harbor many "pathogens" or "commensals" we have not found but could find if we look for it. Healthy people may be asymptomatic for borrelia, or CpN, but carry it. In addition, yes, there is good evidence borrelia is both immunosuppressive and inflammatory. I think it is the root cause, and lets the other bugs take hold in a compromised immune system. That's just *my* theory. What antibacterial have lyme patients *not* tried? I've seen postings for years, they've been on them all. What combo are you saying is helping so many people? And you are saying that those people, or perhaps other people, are still sick?
I'm not sure what you mean by "it has a biofilm." If it's attached single file to a RBC where is the biofilm? Biofilms are goopy matrices made of polysaccharides and minerals/metals and other stuff, within which the organisms exist at a lower metabolism and perhaps an altered state, and much less vulnerable to abx. Freely moving rbc's--how would they have a biofilm?
These are just my questions, I'm not a microbiologist.
Posted by Staris (Member # 17648) on :
I searched the US Patent and Trademark Office website. There are no recent or related patents or patent applications for Stephen Fry or Fry Laboratories (inventors must be individuals who can then assign to companies). A Stephen Fry was inventor of a couple nonapplicable patents in the early 1990s. I don't see any other researchers on the Fry Lab website who might have been an inventor.
You can search yourself for free but it uses boolean logic and your search must be correctly formatted.
Posted by tcw (Member # 15698) on :
quote:This organism that Frylabs is finding has a tail and a biofilm.
bears1985, can you confirm the flagella on the BLO? I remember seeing that it is motile, but I do not remember seeing that it had a flagella.
quote:It is more likely, since found in the sickest patients, an opportunist.
oxygenbabe, I tend to agree - abx do not eradicate it, but patients are not burning up with fever or dying with liver failure either.
quote:Why are so many people getting better on Biaxin, Roxi, Zithromax and an anti-malarial...Mepron, Artemesia and Plaquenil? Macrolides cover almost every bacteria, but in protozoans...they inhibit the protein synthesis.
That is partly what led me to look at Toxoplasma - macrolides and atovaquone have some effect on the tachyzoite form I believe, clindamycin more so and Bactrim/Septra probably more than protein inhibitors. Macrolides inhibit protein synthesis in bacteria, but I think in Apicomplexan parasites they cause the apicoplast to form incorrectly after reproduction.
Toxoplasmosis is not something that would probably be considered for most patients - usually pregnant women with new infections and AIDS infected patients are the typical candidate for treatment. Something like 11% of the US population already has an asymptomatic, chronic Toxoplasma infection.
If it is opportunistic, who knows what drives the infection? Immune suppression from Lyme - maybe. Or maybe immume modulation from hydroxychloroquine, or something else altogether.
Posted by seibertneurolyme (Member # 6416) on :
tcw,
I probably need to do some additional research on toxoplasmosis.
Hubby had the extended G.I. panel form Diagnostechs in Feb 2008 -- toxoplasmosis result was labeled as (saliva IgA -- positive). Goes on to say that this could indicate either past or current infection.
Since that time hubby has continuously been on Bactrim DS -- 2 per day. Also did 4 months of Alinia at 500 mg daily and 4 additional months at 500 mg 2 times per day.
Have not retested the Toxoplasma. However, the initial research I did indicated that something like 30 days of Alinia should eradicate toxoplasmosis. I may be off on the number of days.
Hubby was on both the Bactrim and Alinia when he did the Clongen test on 11/24/09.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
I had a positive toxoplasma IgG lab test 8 months ago. I responded wonderfully to Clindamycin for an unknown reason. I never tried Batrim DS.
I never had a blood smear done at Fry or Clongen. Hmm....makes you wonder?
Posted by seibertneurolyme (Member # 6416) on :
More discouraging news.
Need someone to confirm this by calling Clongen.
Someone told me that the lab has stopped doing bloodslides because it was too labour intensive and not cost effective.
I did have the impression that Dr K was not really aware of just how many people (especially Lymies) were looking for answers and would utilize his services. He had mentioned that normally December was his slowest month and he couldn't understand why he was suddenly so busy.
I hope it is not true, but I can understand him getting discouraged and overwhelmed.
Bea Seibert
Posted by oxygenbabe (Member # 5831) on :
Thanks tcw, interesting insights. It was supposedly motile, but nobody mentioned a flagella as far as I've heard.
Posted by asus (Member # 13881) on :
Clindamycin is also used with quinine to treat babs...
Posted by adamm (Member # 11910) on :
If they stopped doing them, I'd suspect it was because they were threatened from on high.
Posted by seekhelp (Member # 15067) on :
It's amazing how this stuff happens. How can anyone not think someone high is pushing buttons?
Posted by seibertneurolyme (Member # 6416) on :
Lymestop,
Page up on this thread -- I said that Fry stopped doing his new PCR genus tests for Bart and Babs temporarily. Plan is to resume tests, but I was not told a target date.
These were very new tests -- think last November was the first I heard about them.
Bea Seibert
Posted by hiker53 (Member # 6046) on :
I don't understand why each lab does not request blood from the same person and send it to the CDC for comparison or at least send the blood samples to each other. I know labs are competitive, but so much more could be accomplished quickly if they worked together. Grr.
Hiker53
Posted by bears1985 (Member # 17271) on :
TCW - Plaquenil is an immune modulator, but it is still anti-malarial;protozoan. It only "slightly" suppresses the immune system. I have never tested "positive" for Lyme. I have only had Bartonella titers. I have friends that have treated with enough antibiotics to kill a horse and they continue to relapse and have the bug in their smear.
The organism has a tail and is very motile. We can speculate all we want, but when we have negative titers and no WB that is positive - is it Lyme?
Posted by CD57 (Member # 11749) on :
Bears, are you saying that some of the individuals/sickest patients who have this organism actually may not have Lyme? That is quite astounding actually.
But it's not bartonella either?
Posted by galehane (Member # 15437) on :
Bea
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 ]
Posted by oxygenbabe (Member # 5831) on :
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 ]
Posted by METALLlC BLUE (Member # 6628) on :
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.
Posted by oxygenbabe (Member # 5831) on :
You had poison mold exposure, MB? How did/have you recovered from that? PM me if you want to discuss.
Posted by seibertneurolyme (Member # 6416) on :
OxygenBabe,
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
Posted by oxygenbabe (Member # 5831) on :
Bea, forgive me if I'm not too impressed with Dr. K's report that the CDC has "been in contact."
Posted by adamm (Member # 11910) on :
Oh--the Center for De-Cephalization got to these guys. No wonder we don't have an ID on the organism.
Posted by METALLlC BLUE (Member # 6628) on :
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.
Posted by bears1985 (Member # 17271) on :
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.
Biaxin 1000mg Plaquenil 200mg
Posted by oxygenbabe (Member # 5831) on :
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.
Posted by nomoremuscles (Member # 9560) on :
Bears said;
"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.
Posted by tcw (Member # 15698) on :
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.
Posted by kelmo (Member # 8797) on :
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.
Posted by CD57 (Member # 11749) on :
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.
Posted by galehane (Member # 15437) on :
Bears
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
Posted by joysie (Member # 11063) on :
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
Posted by oxygenbabe (Member # 5831) on :
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.
Posted by kelmo (Member # 8797) on :
<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.
Posted by oxygenbabe (Member # 5831) on :
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.
Posted by MY3BOYS (Member # 17830) on :
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???
Posted by seibertneurolyme (Member # 6416) on :
My3Boys,
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
Posted by kelmo (Member # 8797) on :
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.
Kelmo
Posted by oxygenbabe (Member # 5831) on :
Okay, Kelmo, you are right and for the sake of your daughter's health alone I will try to remember to hold my tongue! Posted by tcw (Member # 15698) on :
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.
Posted by seibertneurolyme (Member # 6416) on :
tcw,
I am no microbiologist either, but I am repeating hubby's Clongen results below to clarify.
Blood smear results --
Wet mount (thick smear) -- Numerous motile extracellular bacteria were observed
Trichrome (Gomori) stain for blood parasites -- No structures resembling blood parasites were observed
Wright stain -- Numerous extracellular coccobacilli were observed
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
Posted by kelmo (Member # 8797) on :
Thank you, O2 Posted by oxygenbabe (Member # 5831) on :
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.
Posted by tcw (Member # 15698) on :
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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