This is topic Bacterial Sequencing Lab Result for Steve Seibert in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/123871

Posted by seibertneurolyme (Member # 6416) on :
 
Big surprise here.

The info below is a direct quote from this $800 test done on Steve's blood. The blood sample was taken post mortem on the day he died. It is the same sample used for the Babesia Sequencing Test.

The test takes about 3 weeks to complete. For various reasons the test was not ordered initially. Per discussion with the director at F lab the test is supposed to detect any bacteria present as long as there are at least 10 bacteria.

Steve's DNA was extracted from the blood sample and stored (frozen) I think. The lab did various control testing on the sample before doing the test to prove the DNA was still intact and that the sample was viable.

Quote -- 330,308 sequence reads were obtained for the given sample. The longest sequences were analyzed and compared to all bacterial species.

NO SIGNIFICANT SEQUENCE RESULTS -- No significant results were obtained that met internal quality standards. A "NO SIGNIFICANT SEQUENCE RESULTS" result should be considered in conjunction with clinical presentation and additional diagnostic tests prior to establishing a diagnosis.-- End Quote

According to the lab no bacteria were found -- if unknown bacteria had been present the test would have listed what the nearest match was to a known bacteria.

The lab director feels that what visually looked like bacteria on the previous blood slides was actually the 2 blood borne parasites previously DNA sequenced from this blood sample.

According to the lab babesia and malaria are relatively large apicomplexan parasites, but what they are currently researching is smaller blood borne parasites that have previously not been found in humans. They apparently are researching multiple small blood borne parasites if I understood correctly.

Since I only have numbers to describe the 2 blood borne parasites found in Steve I don't know what animals those particular parasites have been found in and what symptoms the animals had.

Clongen lab previously reported seeing swarming bacteria attacking Steve's White Blood Cells 2 times. This was something they had found in multiple tick borne patients. Initially they thought they were parasites, but they could not DNA sequence them in Steve's blood. But they also could not DNA sequence bacteria either.

I tried doing some research earlier and could not find any info on blood borne parasites which attack the white blood cells.

I am still not 100% sure that the 2 labs are looking at the same bacteria or parasite.

I will be meeting with Steve's LLMD sometime in the next week or two and we will call Dr F himself to try to get more info.

But for now Steve remains a medical mystery to the doctors -- at least on paper.

Personally I am convinced that whatever blood borne parasites he had came from his multiple tickbites and that that is what killed him.

It has been 6 months now since his death and I still do not have an autopsy report.

Will post more info when available.

Bea Seibert
 
Posted by Dekrator48 (Member # 18239) on :
 
Thanks for the update, Bea.

I'm sorry that you have not received a definitive answer as to what caused Steve's death.

I hope and pray that you do receive that answer soon.
 
Posted by Haley (Member # 22008) on :
 
Wow.

Did they say how long the autopsy results would take?
 
Posted by Anonymous2u (Member # 34928) on :
 
Bea have you seen this article?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88943/
 
Posted by seibertneurolyme (Member # 6416) on :
 
Haley -- The hospital initially said up to 6 months on the autopsy. The report is supposed to go to Steve's LLMD which is so ironic since they would not talk to his LLMD during the entire month he was in the ICU.

I have not been in contact with anyone from the hospital in the last couple of months -- but will either have his LLMD call or I will call the patient advocate after we talk to Dr F.

The malpractice attorney I spoke with wanted to see the autopsy report before deciding whether to take my case.

Anonymous -- Thanks for posting the journal article. Can't remember if I have seen that full article or not. I have stacks and stacks of babesia research that I need to get organized.

Now that I have my new computer mostly set up with Windows 8 I need to get my records better organized next.

-------------------------------------------------

The F lab report surprised me because Steve had started running fevers again the night before he passed. Even though the hospital blood cultures were negative I thought maybe the staph infection from his PICC line was still present or one of the other infections he acquired as a result of aspirating during the bronchoscopy.

But then again babesia or whatever bloodborne parasites he had could have caused the fever even though he was on mepron (day 7 on that med).

Personally I don't think the testing that has been done rules out lyme but I don't think that is something that can be pursued further at this point.

Bea Seibert
 
Posted by Lymetoo (Member # 743) on :
 
It must be extremely frustrating to still not have an answer.
 
Posted by map1131 (Member # 2022) on :
 
Bea, could it be that what took Steve will show in the autopsy, tissues, organs etc? Maybe nothing in the blood?

I hope you find some answers. I know it's important to you to understand the why's.

Take care of you.

Pam
 
Posted by seibertneurolyme (Member # 6416) on :
 
map -- Yes, that is still a possibility. The lung docs did point out that an infection could be sequestered in the lungs and not show up in the bloodstream. But the infections that the hospital identified were all found in the bloodstream and not in the sputum cultures or bronchoscopy samples.

Just talked with the office of hubby's LLMD -- it will be next Thursday or Friday before we can talk to Dr F.

So back to patiently (NOT) waiting.

Bea Seibert
 
Posted by seibertneurolyme (Member # 6416) on :
 
Looks like the conference call with Dr F and hubby's LLMD and I will not happen until May 1. Will update after that.

Bea Seibert
 
Posted by Lymetoo (Member # 743) on :
 
Sorry you have to wait so long (again).
 


Powered by UBB.classic™ 6.7.3