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» LymeNet Flash » Questions and Discussion » Medical Questions » Update 5/10/13 -- NOTHING IS AS IT SEEMS -- F Lab Results

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Author Topic: Update 5/10/13 -- NOTHING IS AS IT SEEMS -- F Lab Results
seibertneurolyme
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Nothing is as it seems I think that is a quote from either a movie or a book.

As with everything related to Steves illness nothing is ever straightforward. I got the F lab final test results (except for 1 page which they missed faxing and I should get tomorrow).

And naturally I have to wait until at least Monday for some explanation the doc and lab director are out of the office until then.

Here is what I have so far dont understand it enough to know what it really means other than they obviously found multiple strange unknown organisms in Steves blood.
---------------------------------------------------------------------------------------------------------

FIRST I paid an extra $100 for babesia sequencing.

The original report for Babesia spp. by PCR POTENTIALLY DETECTED please contact the lab if you wish to verify with sequencing at an additional cost of $100.00

The results now say Revised NOT DETECTED 2294 sequence reads were obtained for the given sample. The longest 102 sequences were analyzed and compared to all available bacterial species. 42 sequences met internal significance standards. These detected sequences are not consistent with babesia species, but were likely the result of unique human polymorphisms. A NOT DETECTED result should be considered in conjunction with clinical presentation and additional diagnostic tests prior to establishing a diagnosis. The DNA band resulting from the babesia species PCR was barcoded and sequenced with the following result:

Sequencel: 257bp
Highest Homolgy Sequence Accession#: JF1AZ01469:01332 Human DNA sequence from clone RP11-408019 on chromosome 9p11.2-21
Query Coverage: 90%
Max Identity: 99%

This test uses a kit/reagent designated by the manufacturer as for research use only, not for clinical use..
------------------------------------------------------------------------------------------------------------
What does all of the above mean???? Your guess is as good as mine at this point.

SECOND Protomyxzoa (FL1953) by PCR original results NOT DETECTED

But according to the lab as reported on the original special stains test Visible structures suspect of protozoan embedded in biofilm communities, indicated by red arrow.

Not sure what the cost was, but additional sequence testing was supposed to be done to prove that this was FL1953 (according to phone conversation with Dr F his PCR test misses about 30% of positive samples). This is the test result I am still waiting for.
----------------------------------------------------------------------------------------------------

THIRD I think this is where they tried to identify which bacteria they saw in the special stain. The original report stated Rare (1 4 organisms per total fields observed) coccobacilli adherent to erythrocytes indicated by yellow arrows.

I think this part of the additional testing cost $265 but am not totally sure.

Here are the test results.

Status: Research Pan-Protozoal sequencing on blood sample obtained post mortem. Blood collection tubes did not originate from Fry Laboratories kit and method of phlebotomy unknown.

Research Results:
Molecular Testing
Pan-Protozoal 16S Sequencing 7,876 sequence reads were obtained for the given sample. The longest 3,709 sequences were analyzed and compared to all available bacterial species. 3,553 sequences met internal significance standards with the following results

Top identified species, counts and % contribution

Uncultured eukaryote clone W8eF7 count 1753 44%
Uncultured ochromonad clone USN1 count 956 26%
Uncultured eukaryote clone Ch8A2mE8 count 654 18%
Bursaria sp. 1 MD-2011 count 308 8%
Uncultured eukaryote clone CA-2-1-6B count 21 1%

This test uses a kit/reagent designated by the manufacturer as for research use only, not for clinical use
-----------------------------------------------------------------------------------------------------------
What does all of the above mean?????????

I think it means they found multiple pathogens, but again I have no idea what those pathogens were.

So there you have it more confusion. Not sure if there is any more testing that can be done or if this is as good as it gets.

Will post an update on Monday when I hopefully have more info.

Bea Seibert

UPDATE 5/6/13 -- See my new comments much farther down the page in this thread.

[ 05-10-2013, 02:53 AM: Message edited by: seibertneurolyme ]

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poppy
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Right, very puzzling indeed.
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Haley
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This must be so frustrating for you. I have never understood the purpose of a test that doesn't identify the bacteria.

Maybe the term rod is referring to bacilli which can be pathogenic. Otherwise, I have no clue.

Hopefully the lab can provide more answers.

http://en.wikipedia.org/wiki/Bacillus

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seibertneurolyme
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Haley -- Don't shoot the messenger, but the word rod was a typo on my part -- should have been reads -- I corrected it.

eukaryote -- about the only term I could find in my medical dictionary -- an organism in which the cell nucleus is surrounded by a membrane. Doesn't tell us much does it.

ochromonad -- google converts that to ochromonas which is a type of algae?????

Yes -- very frustrating.

Bea Seibert

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Pinelady
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I hope they treated him for yeast. Did they use Nystatin or Diflucan?

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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seibertneurolyme
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pinelady,

Hubby had never had thrush before he got it during his final hospitalization. The high dose steroids they put him on caused thrush and it was pushed into his lungs when they did the bronchoscopy. He was on diflucan for the last couple of weeks to treat that.

The big question still is did he have babesia and/or FL1953? Also what bacteria was causing the 103 degree fevers and elevated WBC??? And the even bigger question is if it was not caused by babesia and/or FL1953 what caused the ARDS (lung failure)???

The hospital had no explanation for anything and at the end gave lots of confusing/conflicting opinions -- for example how can you be diagnosed with sepsis when all cultures are negative and no cause is found? By definition sepsis is QUOTE -- a systemic inflammatory response to infection ......Pathogenic organisms, including bacteria, mycobacteria, fungi, protozoa, and viruses, may initiate the cascade of inflammatory reactions that constitute sepsis. -- END QUOTE

Definition from Taber's Cyclopedic Medical Dictionary 19th ed.

The hospital did find candida (thrush) and klebsiella and strep and I think pseudomonas at one point, but supposedly all those infections which were all acquired in the hospital were "cured" and the fevers had gone away for several days before returning and the final cultures were all negative but the last note in the file says hubby died of sepsis.

I want to know the "rest of the story".

Bea Seibert

[ 12-12-2012, 11:20 PM: Message edited by: seibertneurolyme ]

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Pam08
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If bacteria wasn't the cause of the fevers and elevated WBC etc is it possible that he had some sort of virus?

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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seibertneurolyme
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Pam,

He was tested for the most common causes of pneumonia including viruses -- all negative. I did ask that he be given an empiric trial of an antiviral when I still thought he had initially had pneumonia but the docs refused -- would not treat anything without a positive test result.

I have spent most of the day reviewing Steve's medical file from his hospitalization since I wanted to be sure I remembered things correctly to discuss with the lawyer.

The thing that really stands out is my realization that his 2nd tickbite of the year was on May 29th and he went back on IV Rocephin on June 1 after crashing. He had 10 or 11 ER visits and 2 hospitalizations between May 31st and his final ER visit and hospitalization beginning on 9/10/12.

The tick was dead when Steve pulled it off. He was rubbing testosterone gel on his shoulder before getting dressed one morning and found the tick. Apparently the ivermectin he was taking killed the tick, but what if anything was it infected with? We think it was a dog tick but unfortunately the lab did not I.D. the species and the only thing they tested for was lyme which was negative.

So many questions -- so few answers.

Bea Seibert

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seibertneurolyme
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For now I still believe my initial theory is correct -- Steve had either babeia and/or FL1953 or some other blood borne parasite which caused the ARDS. He had hemolysis when he went to the ER initially -- RBC decreased from 4.20 on 9/6 to 3.87 on 9/11. It bounced back to 4.56 on 9/18 before the bronchoscopy and the bacterial pneumonia and sepsis.

But in the end after 6 days of mepron and zithromax he had more hemolysis -- had had several episodes during the hospitalization but from 10/8 to 10/9 his RBC dropped from 2.84 to 2.37 -- the lowest it had ever been. And the WBC which had decreased from a high of 31.4 on 9/20 to 9.7 on 10/7 (below 10.0 is normal) had gone back up to 14.2 by 10/9.

I think the hemolysis brought some pathogen out of hiding and that is what triggered the return of the fevers and increase in WBC. And the fact that the hospital cultures were negative is kind of irrelevant since both Clongen and Fry lab found both a blood borne parasite and bacteria. I think the hospital lab just was not good enough to find the pathogens.

I wish I had thought of asking for a consult with a hematologist sooner than I requested it -- but of course they denied my request and I didn't have enough time to fight them on that as well as everything else.

I could of course be wrong, but I do think the truth will come out one way or another.

Bea Seibert

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Razzle
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Could it also be that the inflammatory response was so strong and the body could not shut it down once it got started, even though the infections that triggered the inflammation in the first place had been killed off?

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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FuzzySlippers
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Bea, I don't know whether this information will be helpful or not.


I just did a Google search for information on the newly discovered phlebovirus -- first noticed and/or discovered around 2009, I think, in Missouri. Viruses like this one is known to cause ARDS.


This virus is "a member of a group called phleboviruses, which are carried by sand flies, mosquitoes or ticks. The new virus is closely related to one recently discovered in China that has caused severe illness and even some deaths. They are the only two tick-borne phleboviruses known to cause disease in humans."

http://www.ncbi.nlm.nih.gov/pubmed/22931317


The New England Journal of Medicine said of the virus, "Electron microscopy revealed viruses consistent with members of the Bunyaviridae family. Next-generation sequencing and phylogenetic analysis identified the viruses as novel members of the phlebovirus genus."

http://www.nejm.org/doi/full/10.1056/NEJMoa1203378?query=TOC&


Viruses of the Bunyaviridae family are known to cause ACUTE RESPIRATORY DISTRESS SYNDROME -- among other conditions.

http://tinyurl.com/c3k5vyl


Anyway, this is just one virus. Who knows what other opportunities the hospital missed in terms of testing for viruses (or any other type of infection, for that matter).


Seems that given Steve's history and the plethora of data in the form of labs, etc., you had available to them on Steve's case, that at the very least the hospital should have consulted with virologists, CDC personnel, and other experts.

Sorry for the long links. Let me know if you'd like me to convert them to tiny URLs.

[ 12-17-2012, 07:32 AM: Message edited by: Robin123 ]

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seibertneurolyme
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Razzle -- Good question, but I don't think so since the WBC had returned to normal and the fevers had also stopped.

Actually when I looked at my chart again I noticed that the RBC had increased slightly on the first 5 days of mepron from 2.63 to 2.84 -- I think either the mepron stopped working or it worked too well and caused the last hemolysis event -- that is always one of those unknown treatment questions that only time will answer, but hubby ran out of time.

Hubby had started producing eosinophils again after going on the mepron and they were probably going after the babesia and may have been what triggered the hemolysis.

Bea Seibert

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seibertneurolyme
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FuzzySlippers,

Interesting. I had almost forgotten that hubby had had numerous positive tests over the years for Borna virus -- one of the few things he ever seemed to produce antibodies to. It is in the same family I think as the one you researched. Some LLMD's do think that virus is carried by ticks.

He had quit testing for the virus because the U.S. lab which offered the test closed and testing is only available from one lab in Germany that I know of.

Years of amantadine did not decrease the viral antibody levels. Hubby had stopped amantadine for a couple of years but had restarted it sometime (can't remember the exact date) in 2012 when his tremors returned.

Hubby was actually on amantadine and IV zithromax and factive when he was admitted to the hospital with what was originally diagnosed as double pneumonia. We were skeptical of that diagnosis from the beginning because of the meds he was on at the time and the fact that he was pulsing flagyl and that is what triggered the shortness of breath and fevers.

I will be speaking to F lab next week and probably Clongen as well and will ask if there is any way they can do any additional testing looking for possible viruses.

As far as consulting with anyone -- the hospital would not even speak to hubby's LLMD. And all of the hospital "progress notes" repeatedly state that there was no evidence of any tickborne infections blah blah blah.

Any test result the hospital did not understand was basically ignored -- such as the abnormal brain SPECT scans from Columbia Presbyterian. And even the Clongen lab results were ignored -- first test result done while in the hospital which showed coccobacilli before the hospital had decided that hubby had acquired bacterial pneumonia.

Actually I was kind of amazed that the hospital requested records from hubby's LLMD and from his PCP. No other teaching hospital had ever done that before. But requesting the records and relying on them or even discussing them are 2 different things.

Plus I supplied the hospital with a nice thick stack of records that I thought were relevant since I did not know what they had gotten from the doctors.

The I.D. doc thinks that lyme disease is rare so that kind of sums up their experience and attitude towards anything tickborne.

Bea Seibert

[ 12-13-2012, 02:07 AM: Message edited by: seibertneurolyme ]

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lax mom
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When I was hospitalized for sepsis, the gram negative coccobaccilli they found in my blood was e. coli.

Could that have been what caused his sepsis, fever and high WBC's?

--------------------
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seibertneurolyme
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lax mom,

Anything is a possibility of course, but the thing everyone needs to remember is that both Clongen and F lab found bacteria that the hospital could not find. I think that is highly suggestive of some unusual organism that may or may not be tickborne.

I am bringing back up the thread that I posted the Clongen results in -- that referred to the swarming bacteria in the WBC's.

I do know Steve was tested for c.diff and there were multiple blood, urine, sputum and stool samples tested multiple times -- mostly they just tried to culture those specimens and the only things that grew out were the klebsiella and the other couple of things that they actually treated.

Bea Seibert

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seekhelp
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Bea, I think this stuff is a LOT more complicated than we know. Did anyone search for an Acanthamoeba or Balamuthia infection before on him? It's only detected via spinal fluid or brain biopsy.

In my opinion, this 'specialty' testing from Fry, Clongen, etc. is completely useless the way they write up reports. Clongen did the same with me. Just a bunch of vague stuff leading you on to more questions...more testing..more $$$$. Never any definitive conclusion that has solid basis to use as ammunition against anyone. I completely understand this stuff is enormously compliated, but the amount of leeway these labs have seems wrong to me.

The next question is who WOULDN'T they find something in? Do even perfectly healthy people show oddities?

It's like giving someone a book in Mandarin when all they can speak/read is English.

I know this is not feasible, but if YOU were to provide a blood sample to these labs, you have to wonder how it would show on the analysis. That sure would be interesting, right? It may be very telling one way or the other.

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Haley
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Are you sure that the Strep was acquired in the hospital. I have been treating strep in the blood for years. It does not go away easily.

Maybe it had something to do with the Strep.

http://www.odh.ohio.gov/pdf/idcm/stss.pdf

Also, that's crazy that the tick died due to the Ivermectin. My current doctor asks me.... why do you want to take an insecticide?

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seibertneurolyme
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seek,

I understand your frustration and share much of it. The big problem is that antibody and PCR tests only work if you are looking for the exact organism that those tests are designed to detect. There are so many possibilities.

That is why we started relying on Clongen and to a lesser extent F lab. Good old fashioned microscopy does show things but the problem is taking it to the next step and confirming by some other means what is visually seen.

We tried to do that by using SpiroStat lab in April, 2012 and totally struck out there because they only rely on PCR testing.

I do think there is great variability in the reliability of PCR testing but can't prove it. Actually I tried to do some research last night at genbank and couldn't get anywhere. But it was very disturbing to read that the number of registered gene sequences grows exponentially every 18 months I think it said.

I do think that tickborne disease patients have many more unusual organisms present than a "normal healthy person" but that is just my personal opinion. I have thought about being tested over the years but really did not have the money and did not think it was necessary since I am relatively healthy despite being overweight. My routine bloodwork always came back much better than Steve's.

I do need to get in touch with Columbia but have been putting off doing that. I am totally convinced that something should show up from an examination of Steve's brain. If they can't find anything then in my opinion they don't know what they are doing. It may or may not be tick related, but something had to cause the abnormal brain SPECT scans and all the neurological symptoms.

There is so much research that needs to be done. At this point I am still trying to figure out where to focus my efforts going forward. Of course I want to find out what happened to Steve, but that is only one piece of a much bigger issue. For now obviously understanding Steve's illness and death is my top priority.

Bea Seibert

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lax mom
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quote:
Originally posted by Haley:
I have been treating strep in the blood for years. It does not go away easily.


I was told by the hospital ID Dr that once bacteria gets in the blood (e.coli for me), it can always come back...scary.

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poppy
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About Columbia, I don't know who is doing the pathology work, but in a situation like this it is pretty open ended, and could take quite a while. And they will be hindered by the same lack of knowledge of all the possible pathogens. Not only what the tick gave us, but the reactivated and opportunistic ones that take advantage.
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randibear
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bea, just a side thought.

make sure you are getting ALL the records.

i had my files transferred from a obgyn (who retired) to a new doctor. i asked for copies of my files.

the nurse told me, we put the most recent files on computer and have some paper copies but they're not complete. so i got bits and pieces of my records. there were huge gaps.

i had been going to this guy for 30 years and only got about an inch or so of records.

it's very frustrating. they only give you partial records.

also i went to a llmd and took my records from another doctor. it didn't work out with him and i asked for the file back that i had given them. they wouldn't give it to me.

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seekhelp
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I am extremely careful to get all my records. I agree Randibear. Guard them like gold.
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seibertneurolyme
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Haley -- Hubby had been tested several times over the years for strep and it was not an issue. It grew out in a culture I think but quit growing out after antibiotic treatment so the docs assumed it was cured.

I made enough noise that they did not stop his antibiotics after the normal 10 day course -- I think it was more like 15 days or so before the WBC went back to normal. Can't remember without digging but think it was a sputum culture and not a blood culture.

But there were negative cultures of both prior to the positive cultures that only showed up after the bronchoscopy. Was told and they actually put it in writing multiple times that they assumed he aspirated during the bronchoscopy and that is how the strep and klebsiellla got into his lungs.

Poppy -- The paperwork I have says that a team of 5 or 6 pathologists do the work at Columbia and they try to determine cause of death or any changes in the brain. It is the psych dept that is in charge of the research I think so yes, they will not necessarily be trained in all things tickborne but I am supposed to provide them with medical records in addition to doing some phone interviews.

It said they keep the specimens for something like 30 years if I remember correctly so hopefully if some new test or pathogen comes to light in the future they could do additional testing.

randi -- I went to medical records every day and got copies of records. That particular hospital won some award for being one of the most wired hospitals. It is good that everything is computerized, but on the other hand it makes you more likely to be looked at as just a number in my opinion.

Also the way the system was set up everything was filed by the date it was ordered so if a test took longer than a day I had to go back and ask for it to be looked up to get the results. So yes, I am missing a few things.

And I did request a copy of the complete chart which I did not get the first go round. But will be asking again. They will charge me an arm and a leg I am sure, but I am not going to wait for the lawyers to request the entire chart.

Also by law (the wonderful HIPPA law) once you give a doc records from another doc they are not allowed to give them back to you. They can only give you copies of records of tests they ordered themselves or notes that they wrote -- but nothing from another doc.

Bea Seibert

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sparkle7
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Good luck to you Bea. I hope you can find what you are looking for.

Wow, didn't know about the HIPPA law. How bizarre.

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Pinelady
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We need a lot better microscopy....

New methods and lens being used can make a huge difference in what they find because the infections turn off the TLR's to make no antibodies against.
http://www.youtube.com/watch?v=7tAqG1Qyvpw

Fact is they can send men into outer space any day and yet they refuse to tell the truth of what using cells from a woman who had Syphilis/HepB/Cancer has done to all of us.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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randibear
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well crap, bea, wish i had known that. those records had my igenex test results and everything in it.

poooo

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do not look back when the only course is forward

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Catgirl
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quote:
Originally posted by seibertneurolyme:
For now I still believe my initial theory is correct -- Steve had either babeia and/or FL1953 or some other blood borne parasite which caused the ARDS.

I've had several lyme docs tell me they thought there was another undiscoverd bug out there. One of them told me that she thought I have it.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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seibertneurolyme
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Finally have some new info to report.

The lab will not talk to me directly -- their policy is to only discuss test results with the doctor. So I still don't know exactly what protozoan were DNA sequenced from Steve's blood.

But I did find out that the DNA sequencing for bacteria has not yet been done. So that test will be added on.

By definition it is my understanding that the lab uses the term eukaryote to describe protozoa.

The DNA sequencing did NOT find babesia or FL1953 -- what they did find were some other unknown (to me at this point) blood borne protozoa. And they found at least 2 or 3 different protozoa as described in the test results reported.

Maybe in 2 or 3 weeks I will finally get some answers.

I did find out that the lab can also try using old frozen samples of Steve's blood (even from years ago) to try to do DNA sequencing on those samples. That is something I may pursue in the future as well. Would like to find out more about what they thought they found first before going to that additional expense.

Bea Seibert

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poppy
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Wondering how they have excluded all babesia, since not all have been sequenced. So, they will not have a database to compare. This will be true for other new as yet unsequenced organisms.

The last line in this abstract is saying that unnamed related species to duncani might be causing positive tests. What that tells me is that everything protozoal that a tick can transmit has not yet been identified.

http://www.ncbi.nlm.nih.gov/pubmed/20861326

And I have a book titled "Parasitic Protozoa" published in 1987 which is more than 200 pages in length. If it was a more recent edition, there would probably be more pages to add new information.

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seibertneurolyme
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Poppy -- I am no expert on genetics, but it is my understanding that all babesia species share a certain genetic signature and then there are other genes which are used to identify the specific strain.

I wish I could talk to the lab about my husband's results myself because I am still a little confused over these results myself. The first babesia PCR test result said potentially detected and then the sequencing test looking for the specific species came back negative.

I would like to know if there is any possibility that the test was negative simply because there was not sufficient DNA rather than because babesia was not found.

I may have to make another appointment with hubby's LLMD so that I can be present when they call the lab -- or alternatively I am trying to schedule an appointment with Dr F himself. I really really want to understand more about hubby's test results and how accurate the testing is and if there are other tests that can be done by that lab or someone else to further clarify matters.

It was actually a relief to me to find out that the new testing was not available until June. We had debated on doing the testing for FL1953 in April but if we had done that then it would not have given us any more info at the time.

I still think it is important to find out what pathogens hubby had so it can maybe help someone else.

Bea Seibert

Poppy -- Want to add that the abstract you referenced is in relation to the Focus Lab antibody test for babesia duncani. Antibody tests can of course have cross reactions. DNA sequencing is an entirely different type of testing.

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springshowers
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Hello

I would think it is very possible it was something acquired at the hospital ! I had sepsis proven to be from my port but I was very lucky to get to hospital and get through it. It took them days to figure me out and was put in the unit where they make you go when you perplex them. That scared me but they finally figured it out. I know I didn't get it at the hospital but as you read here do many people do.
Maybe this will help with some ideas ??

Sepsis / toxic shock

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LymeMECFSMCS
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Bea, did Steve ever test for histoplasmosis? Since it requires hard-core antifungals once disseminated and can resurface when one is immune-compromised I have wondered about it as a coinfection some cases (it's symptoms are often respiratory, and can be fatal via ARDS). It would especially be one to question if he worked with soil or did any work underground (or spent time in caves) or had exposure to bats.
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seibertneurolyme
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LymeCFIDSMCS -- Hadn't seen your comment before. Yes hubby was tested multiple times in multiple ways over the years for histo and that was ruled out.

Bea Seibert

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seibertneurolyme
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Hubby's LLMD was finally able to schedule a phone conference with Dr F. I have spoken to the lab director there a few times as well.

Final conclusion is that hubby had at least 2 or 3 bloodborne parasites. They are uncategorized -- meaning that they are recorded with GenBank -- but they are unnamed and there is no additional info available regarding these particular organisms. They could be unidentified species of babesia or something else entirely. No one knows and there doesn't seem to be much chance of learning anything more at this point.

According to Dr F there are around 600 uncategorized bloodborne parasites recorded with GenBank. So it is not surprising that many people have negative babesia tests but exhibit symptoms.

Many are already familiar with the labs work on FL1953 -- but you might not know that they are also currently working on research on an additional 4 or 5 bloodborne parasites that fall in the group of 600 mentioned above.

Also Dr F made a comment that MS patients usually have at least 4 or 5 bloodborne parasites when they are tested. I find that mindboggling.

The doc mentioned that the lab will be publishing something soon and it was my understanding that once that happens they will be sharing more research with other scientists.

The bacteria sequencing test was finally completed and as I previously reported that came back negative. The lab thinks that what looked like bacteria on the initial blood stain was actually the bloodborne parasites.

Also want to add that the doc said that it is not uncommon for the lab to detect human DNA as the report stated above. He said that many bloodborne parasites incorporate human DNA into their genetic structure.

Still waiting on the autopsy report.

So far the only thing that has shown up as a potential cause of the ARDS (lung failure) is the 2 or 3 bloodborne parasites found by the F lab as reported here and confirmed by a bloodsmear from Clongen.

Bea Seibert

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a mom
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Bea,

When do you think the autopsy report will come in?

Janet

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seekhelp
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Wow, hearing the unknown number is so amazingly high just makes me have no incentive to get tests tests anymore. [Frown] Everything sounds impossible. 600 is a crazy # to be unidentified. I find the incorporation of human DNA comment very scary as I was told this exact line by someone who reviewed my blood specimen.
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lax mom
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Since there are so many unknown blood parasites, is there anything broad spectrum that could possibly treat them?

I feel that your research on Steve's behalf is going to save countless lives.

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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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rzh1
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To make matters even more complicated,here is a study that shows there is bacteria in the blood of healthy people.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC154583/

conclusion: Our findings are that there are pleomorphic bacteria in the blood of healthy humans.

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seibertneurolyme
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a mom -- will be checking with the hospital next week to see what the hold up is on the autopsy report

seek -- yes, testing is expensive and for some tests you need to know what you are looking for to order the right test. In my opinion everyone with chronic ongoing symptoms and evidence of tick exposure needs to treat for lyme, babesia and bartonella ALL regardless of test results.

lax mom -- the treatment for bloodborne parasites is a combo of antiparasitic meds/herbs and malaria meds/herbs. Don't think there is any one herb or med that will do the job.

And Dr F would say a low fat diet as well -- but Steve's LLMD and I are not convinced that that is healthy or even beneficial especially for patients with neuropsych symptoms. Lipid peroxide numbers which reflect the breakdown of fats improved for Steve when he added supplemental good fats (olive oil and phoschol -- phosphatidylcholine) to his diet.

Meds/supplements for biofilm and hypercoagulation would also be part of the "best treatment" protocol for blood borne parasites.

The problem is that there are 100 or more species of babesia for example and supposedly only half a dozen or so infect humans. Probably included in that 600 unidentified protozoa are many more babesia species that may be found in animals and have just not been documented. But unless it is found in a dog or in cattle there is very little research into other babesia species found in other animals. For example just how many journal articles are there researching babesia in deer ?

rzh1 -- Well we all know that the body needs good stomach bacteria -- don't really know if there are any other "good" bacteria found in humans. But the definition of healthy people of course depends greatly on who is writing the article.

Probably everyone on this forum has been told by multiple doctors that there is nothing medically wrong with them -- which infers that they are "healthy".

But as far as I know there are no "good" protozoa and they are not found in healthy people.

Bea Seibert

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