He has apparently been working with Clongen Labs to develop new testing which sounds very promising. He had this to say in response to someone asking him about bartonella/BLO. Maybe this lab will be able to identify it!! How exciting!!
November 10, 2008 8:50 PM
Lyme report: Montgomery County, MD said...
I don't know what these bacteria are. They are present in very sick patients. I still think they are opportunistic. See today's blog about a patient I saw. Clongen is attempting, as we speak, to DNA sequence the bacteria.
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I do have one concern about the docs post linked above. If the person was not also tested for Mycoplasma then we can't know if the mystery bug is really the mystery bug or not.
Both Bartonella and Mycoplasma are gram negative bacteria which would show up in a bloodslide (from Fry or Clongen) as cocobacilli.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
This is very interesting. Can someone explain how a species panel works? Does it determine which species it is? I have been wanting to test for rarer forms of bartonella (i.e. b. vinsonii) and also to determine if I have mycoplasma or BLO or what (Fry smear was positive). Would the bartonella species test from Clongen be the one to order?
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posted
I think this is key to treatment as there is definitely something else going on here besides borrelia infections as it is much to widespread.
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tickbattler
Unregistered
posted
You might find it interesting that the famous pediatric LLMD (Dr. J in CT) uses Clongen now for the western blot for lyme and for some coinfection testing. I think he has been doing this for about a year at least, since he stopped using MDL.
He stopped MDL because they changed their lab techniques and he stopped getting positive results on things he knew should have been positive.
That's where I first heard about Clongen. I have been surprised that I haven't heard about it much from other LLMD's or even on this site. I know Dr. J knows what he is doing, so this must be a good lab!
CD57
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posted
My LLMD hadn't heard about it either but if Dr J in CT is using it, sounds pretty good to me.
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CD57
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Bea--re the link that you posted to Clongen's tests.....what would be the biggest bang for the buck...ie; per your conversation with the head of the lab, how can one identify what bugs someone has?
This would be separate and different from running one of their bartonella species panels, etc.
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posted
I had some contact with the owner of this lab a few months ago on an unrelated subject. He was extremely kind and responsive. I'm going to try to contact him and see if he has any comments or thoughts on what Fry labs is reporting.....I'll certainly share anything I might learn.
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treepatrol
Honored Contributor (10K+ posts)
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Thius lowers my expectation of this lab when I read this
The disease is caused by Borrelia burgdorferi, a spriochete sharing sequence homology with Treponema and Leptospira. Borrelia burgdorferi is the longest and narrowest of the Borreliae. It contains several antigens that are important in pathogenesis and diagnosis including outer surface proteins, OspA through OspG, that are located on plasmids and a 41 kDa flagellar protein. Although there are three geno-species recognized within the Borrelia burgdorferi (B. burgdorferi sensu lato): B. burgdorferi sensu stricto, B. garinii, and B. afzelii, strains found in the United States are relatively homogeneous and conform to the definition of B. burgdorferi sensu stricto. The two other species are present in Europe and Asia and produce mixed infections in humans and mice. B. garinii is mainly associated with neuroborreliosis whereas B. afzelii is associated with arthritis and skin lesions. The risk of developing LD following a tick bite is less than 0.01 and it has been shown that it is not cost-effective to recommend prophylactic treatment for everyone that has been bitten by a tick. Bull!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Just for clarity -- so if one does the blood smear and THEN PCR testing, one can find out the exact species of bart or babs (or mycoplasma, etc.)? And you are going to try this?
Also, I was reading about people using veterinary labs to find a bart species, which is something I looked into but didn't know how to approach with my LLMD since it sounds a little nuts.
Fry told me that it looked on my blood slide like I had an unusual species of bartonella. My cardiac symptoms from bart have been highly unusual, and the closest description I could found that matched mine was of dogs suffering from bartonella vinsonii, which is also known to exist in humans.
I would really like to know the exact species too, so could you let us know if you proceed with this and what happens?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Hubby is doing so poorly we decided to move up his testing. He will have blood drawn at Clongen on 11/24 -- his LLMD appointment is 12/16. Results should be available by the appointment date.
Maybe we are taking a big gamble -- but at this point I would rather spend money on testing rather than on ER visits and repeating things like CT's and MRI's etc.
A blood smear with 4 slides is $150. Basically the same as Fry is doing I think.
Add $900 to identify all pathogens found on the blood smear by 16S DNA sequencing.
Plus $119 for a mycoplasma genus PCR test (will test for 20 species but will not say which of those species you have if test is positive). At this point I don't think hubby needs to do the additional DNA testing to identify mycoplasma by species. Mycoplasma will not show up on a bloodslide.
Since hubby is currently taking Alinia for Babesia (will have been at full dose for 4 months on 12/8) we are not having that tested separately. But if it did happen to show up on the bloodslide then it would be identified by the DNA testing we are having done.
The blood slide and DNA testing should identify any Bartonella species and I think also Rickettsia species (not 100 % sure about the Rickettsia)and Babesia as I said and Ehrlichia as well I think.
Basically what we are trying to do is identify any and all bacteria found in the blood.
The tests we are having done will not identify Borrelia (Lyme) because the odds of finding a spirochete on a bloodslide are very very very low.
An alternative test method would be to do the individual genus tests for Bartonella, Rickettsia, Babesia, Ehrlichia etc -- but then you would have to go back and do additional DNA testing if you wanted to know the exact species of each group. Also you might miss some other type of bacteria you had not thought to test for. Also these are PCR tests and those often have false negative resiults.
Hubby either does not produce antibodies to much of anything or they are bound up and do not react on many tests. So for him this test is much more likely to find things that have been missed by the normal antibody tests.
By looking at a bloodslide you can see what is there and then have the DNA testing done to prove what is visibly seen on the slide. The big problem as most everyone is aware is that on a slide many bugs can look alike. This new testing should help greatly to find some answers.
If the pathogens are intracellular like Lyme then they won't be found floating in the blood and won't be identified.
Hubby plans to continue on his antibiotics and may even take some additional herbs immediately prior to his blood draw. Some LLMD's believe that an antibiotic challenge increases the chance of a positive test for intracellular pathogens such as mycoplasma.
I think the testing still depends on what symptoms someone is having and also what prior testing they have done.
Dr K at Clongen feels that IGeneX is very good at what they do which is mostly antibody testing.
I have no idea how the Western Blot from Clongen lab compares to IGeneX or other labs. Since hubby only ever had band 41 show positive once (the only band that ever showed up at all) on many tests from many labs I don't plan on repeating that test.
I might actually consider testing for B. garinii or B. afzelli at some point in the future as those species have never been tested for. The big drawback is that those are PCR tests.
Tree,
My personal opinion is that this lab is trying to stay neutral. They presented at both the ILADS conference and the IDSA conferences recently. They are doing unpaid research into Morgellon's.
I do think the lab has very high standards and very up to date equipment and techniques. Dr K told hubby they are working on updating their website to add new tests etc -- the babesia genus test is not listed there yet.
I feel like the lab is open minded and if they start seeing lots of very sick Lymies with unusual pathogens they could be persuaded to update some of their phrasing.
------------------------ Several new comments have been added to the blog topic over the last day or two. Lots of interesting discussions regarding bart, mycoplasma, microsporidia etc.
That is so exciting -- I truly hope this testing can get to the bottom of your hubby's situation. Is he taking houttuynia? (the ingredient in Dr. Zhang's HH capsules?). Buhner says it is also effective against mycoplasma (Zhang uses it for bart) and I am taking VERY high doses of it and finding it helpful. I rarely find herbs this helpful but at high doses it feels as potent as the drugs, or more potent.
I am assuming your hubby had a smear done from Fry. Would you be willing to post the image here? I am curious if it looks like mine, which is somewhat odd. If you look through the archives I posted mine on a former thread back in May or so.
I'm also curious, where did your hubby get sick? If that's too personal, don't bother.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Alv
Unregistered
posted
My son has done the Clongen test for mucoplasma fermentas , bartonella and babesia.
They were ordered by DR J.He was tested 2 days prior to that from my LLMD with muscle testing.And showed that he was still positive to BART , MUCO and LYME but not babesia.
THE test came back negative( cost $519).Well my sons pattern were very clear for BART.HIS VEFG came very high.Another test to see how much BART he has.
When I called CLONGEN they told me that if he was taking antibiotics while he did the test the bugs will not show.
So please find out if he needs to be off antibiotics.
If he has HIGH load of bartonella...he is not going to show Ehrlichia , lyme , babesia or any other coinfections...Very low chances. My son has brain lession ( neuro lyme) he hardly could show 1 band in IGENEX.bartonella shuts down every thing.
You really need to use HIGH dosages of KILLING bart ( this should be your main focus).It took me 21 months of MANY MANY things to try to lower the load of bart....and I am still fighting it.
Read my posts and I have tried 3-4 things at the same time NON stop-MAINLY addressing BART and just covering the other bugs with my protocoll.NEver addresses JUST lyme.The herx was horrible...
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MariaA
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posted
I thought the antibiotic challenge tests involved taking the antibiotics, then stopping, then testing- I'm not sure of the length of time people guess are optimal for any of those steps.
-------------------- Symptom Free!!! Thank you all!!!!
posted
As far as an atibiotic challenge and testing -- the lab could not advise me -- I did ask. I think this is an area that has not been researched very much. I know when hubby did G.I. parasite testing his eosinophils were never elevated except after he started treating the parasites.
When hubby did the Fry slides in March and August of 2007 he was on antibiotics both times. Can't post pictures as all I have are black and white zerox copies.
The first slide in March of 2007 -- hubby had been on low dose Clindamycin/Quinine alternating every 10 days with low dose Amoxycillin for over a month -- results were positive for Bart and positive for Babesia.
There were many ring forms of Babesia present. LLMD asked for permission to use the pictures for teaching purposes since they showed such a severe Babs infection. Also did the antibody test for Bart (either Bart h. or Bart q. -- could be either according to Fry lab)-- positive at 1:64
Second slide in August 2007 -- after 3 additional months of above Babs protocol and 2 rounds of Primaquine and Chloroquine (followed Liz 28 protocol) and 6 weeks of IV Primaxin. If I remember correctly was just finishing up the Primaxin. Only did the bloodslide this time -- babs was gone -- virtually no visible change in the Bart.
But then in 2008 hubby tried Alinia for G.I. parasites and Babs symptoms resurfaced plus he had a 2nd priapism during babs treatment (has been documented in malaria).
Hubby has used 6 new different antibiotics since those 2 bloodslides in 2007. A few doses of IV Ampicillin in the hospital, many months of Bactrim, low dose Minocycline, low dose Zithromax, Rifampin -- several months at half dose and then 1 month at full dose, Alinia -- several months at half dose and almost 4 months at full dose, a couple of months of Diflucan plus many herbs.
In my opinion I would be very surprised if there are no bacteria found. Hubby is probably the most symptomatic he has been in several years. Almost as bad as when he first got sick 7 1/2 years ago.
The fact that the cold agglutin test showed positive again on 10/5 -- was last positive in fall of 2007 -- indicates to me that something we have tried recently is finally hitting the bugs or the meds have totally failed and the bugs have become resistant. Something has changed very significantly.
Hubby took HH at 3 capsules daily for a couple of months -- then we ran out for a month or so and tried to restart it shortly before 10/5 -- have tried adding it back at 2 capsules daily just this last week.
Hubby never had a rash or a known tickbite. He was an accountant for Bassett Furniture in Bassett, Virginia. He helped take year end inventory of raw lumber piles (shipped in from many other states in the U.S.) just before Thanksgiving in 2000. As far as we know this is his most likely tick exposure.
He developed flu like symptoms that would not go away around Christmas. Left work on disability with nausea/vomiting/dry heaves and Parkinsonian tremors on 2/14/01.
Alv,
Not exactly sure when your son was tested at Clongen. But unless he had the bloodslide from Clongen he only had the PCR tests which are known to produce many false negatives.
That is why I am so excited about the new tests. As you said bart suppresses the immune system and may prevent antibody tests from being positive.
The DNA test is not just looking for one species of Mycoplasma but for 20 species. And the other DNA tests are new -- just available to the public in the last couple of months I think. But I have heard that the technology has been available for at least a decade in research labs.
The lab director did admit that there just is not a lot known about many of these pathogens. But the first step to getting more research dollars is to prove that the bugs are human pathogens. Then once the species have been identified there is still the challenge of knowing how to treat.
Unfortunately there are no perfect foolproof tests. But I do think this new technology is another tool in our battle.
Bea Seibert
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CD57
Frequent Contributor (1K+ posts)
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posted
New post from the LymeMD blog. He posits, on it, that perhaps "bartonella/BLO" is really a member of the psuedomonas species....Clongen will hopefully be able to ID these.
Patient response There are numerous factors which seem to determine how each patient will respond. If patients are to improve I believe that doctors need to try different approaches. The one size fits all method works poorly. A 43 year old woman was seen several months ago for a second opinion. She was diagnosed with fibromyalgia and CFS. She had been very physically active. She was a personal trainer. Now she was a wreck. She had typical signs and symptoms of disseminated Lyme and neuroborreliosis. Her SPECT showed left frontal lobe hypo perfusion. The brain MRI was normal. Her exam had neurological abnormalities and her labs confirmed exposure to Lyme. She was treated with Ceftin and Minocin. There was a tolerance issue and a bad Herx. She was given a Medrol dose pack and switched to Biaxin and Plaquenil. After two months she felt even worse. We started IV Rocephin. The pain was improving but the cognitive issues were unaffected. Symptoms of sweating in cycles suggested Babesiosis. Mepron and Artemesin were added(the Biaxin and Plaqueil had never been discontinued). The sweating went away but otherwise she felt worse.She only took this regimen for a month. There was a worsening of cognitive functions- more memory loss, and an increase in neuropathic symptoms and pain. She was then treated with only Rocephin: still not better. IV Zithromax was added- then she started to improve. It was the IV Zithromax that was making a difference. The Rocephin was stopped and she continued to improve. When Flagyl was added she again felt worse. The treatment was changed: IV Zithromax. Just Rifampin was added and she was now really improving. She was tired- but able to work. Her cognitive dysfunction was clearing up. Much of her pain was gone. (I had prescribed Levaquin but she didn't take it after looking up its side effects). I saw her today 5 months into treatment. The hangdog look was gone. She agreed to try the Levaquin. I hope it helps.
She had Lyme with neurocognitive deficits and an abnormal SPECT scan. The only lab data I will add is that she had a high C6 Lyme peptide index and that her blood smear at Clongen showed motile gram negative coccobacilli.
What have I been treating her for? Do people really have Herx reactions which go on for months? If a patient Herxes for more than one month I think it is time to change the treatment. The immunological consequences of a prolonged "Herx" can't be good. Bacteremic. Yes. With what? Has Fry found the answer before Clongen: We shall see. Babesia- or an immitator like Toxoplasmosis, as exists in immunosupressed HIV patients? This has been suggested as a possibility. Is there really Bartonella and or Mycoplasm. We don't know. Why didn't Rocephin work while Zithromax did? There are lots of questions and still few answers. As a clinician all I can do is report my clinical results. Again, one size does not fit all.
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oxygenbabe
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posted
In some ways I admire lyme md foe wading into the deep end. And at least he changes meds after a month of 'herx' or worsening of symptoms; this approach would probably save many patients years of agony. OTOH I fond his stories sobering. Why was the patient put on a medrol pack and for how long. What symptoms or herx required steroids? Why not just stick with zith. Maybe with the right med less is more. Why add levaquin? Why keep a patient on five meds anyway? It's too much swagger for my taste; it's still the 'bomb em with your whole arsenal' mentality. I know people whom I highly respect who disagree with me about aggressive treatment. I favor starting conservatively unless the patient is dying. It will be many years before we know what we're dealing with but meanwhile I shudder to imagine being on the amount of meds she was and is on. It may be that zith alone over time would do fine. Each to his own on this perilous journey.
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posted
Hubby had his blood drawn by Clongen on Monday 11/24. Don't know yet if they found the mystery bug in his blood. May have some news tomorrow. If they found the bug in his blood it will be at least another week before they I.D. it. Probably will not have definitive results before his 12/16 LLMD appointment -- Maryland labs can't send test results directly to patients by law.
I think the lab has a number of samples from multiple patients now so maybe they will be able to say if it is the same bug. Although it looks the same on a bloodslide it still could be different gram negative bacteria in different people.
Oxygen Babe,
LymeMD is not hubby's doc. I mainly agree with your viewpoint.
I know hubby could never have tolerated multiple antibiotics early in his illness. He is on the most meds now he has ever been on -- but he is also on the most symptom control meds including prednisone (Cortef). Not really sure if we are making any real progress or not.
It is just so hard to know what is right or wrong for even one person let alone the Lyme population as a whole.
I am cautiously optimistic that identifying some of these unknown pathogens will help with formulating more effective treatments. Maybe the shotgun approach will be replaced by more targeted rifle shots.
Bea Seibert
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CD57
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posted
How edciting Bea! Pls keep us updated.
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Latest I heard was the mystery bug may be some sort of pseudomona. Whether it is a new form or an already identified form I don't know, but pseudomonas are very resistant to antibiotics and are usually treated I.V. with several at at time--the heavy duty ones such as cipro and gentamcyin.
Anyway, I may be wrong on this, but it comes from someone who talked to Dr. K at Clongen (sp?)
One must also remember that not all pseudomonas are pathogenic to humans. Some only harm plants and some are not harmful at all. Again, I am trying to think positive about this since so many people tested positive and even healthy people tested positive for this mystery bug.
If one thing is learned from the discussion about fry`s smears it is this, What looks the same in a smear might be very different things. Gale
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True, but the fact that the lymeblog doctor is proposing it may be pseodomonas is interesting as well.
To clarify, that does not many everyone who had the positive Fry "mystery bug" has psueodomonas and even if they did they might be different kind of pseudomonas.
I do think it is important people think about all options when they talk to their LLMDS's about the testing.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10192 | From Illinois | Registered: Aug 2004
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Not sure how many more options I can stand, having already got lyme, babs, Cpn, mycoplasma, and this mystery critter hanging around RBCs. Not to mention chronic sinusitus for years, predating lyme.
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