posted
Got the Clongen lab report we had been waiting for. Whether or not it helps Steve in his battle at least it does justify the tickborne treatment we have been requesting.
The docs are finally taking notice. I actually suggested that they call the CDC. Probably will not happen, but they can't deny that Steve has some pathogens that they have no idea how to treat.
Lab reports from Clongen -- Babesia Duncani PCR -- negative. Actually kind of expected those results -- I am thinking he either has some other unknown babesia strain (possible Babesia gibsoni? -- closely related to Duncani) or possibly FL1953.
2) Numerous WBCs filled with swarming bacteria. -- Clongen has seen this previously in Steve's blood -- also in numerous other tick-borne patients -- has been unable to DNA sequence this organism in the past
posted
If Steve can hang on until this afternoon I still plan to get the F lab testing done. If it is too late to help him then at least the info could help other patients and maybe help improve lab testing for some of these unknown pathogens.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Talked the docs into trying inhaled tobramycin -- Steve had gotten 2 doses of that med IV before they originally identified the bacteria involved in his bacterial pneumonia.
That is being infused as I type. He is also still getting the zosyn.
The docs and I had a theoretical discussion about whether the bacteria they cultured from his sputum speciman is just colonized in his tubes and is innocuous. My feeling is that if they have no other explanation for the fevers and elevated WBC he needs the 2nd antibiotic (tobramycin) to help with the bacterial pneumonia since he is in such a weakened state from the ARDS.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Thanks for the update.
As you know, there are a lot of false negatives with PCR, so I would not assume too much about the identification of this parasite. It certainly could be some other species, but until there is a genus test with higher sensitivity, we won't know for sure.
Wondering what would be the explanation for inability to DNA sequence the bacteria in the white blood cells. It sounds like it might be something that is not yet been sequenced, so there would be nothing to compare it to. Ticks are full of potential pathogens, and we only know a few of them.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I know this probably won't happen, but if there were a vet lab that took human blood for testing, they might identify some animal-associated babesia.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Bea, you are so courageous. I am so proud to be your Lymenet friend.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It probably is FL1953. It mimics babesia and causes respiratory distress.
Have you asked the doctors about a blood transfusion? If you could get him to rally with a transfusion, then you could get his blood to Fry labs for an analysis.
I hope he can make it through this. I am so sorry for everything you both are going through.
I thought I was relapsing with babesia too. I tested positive for duncan in 2010 and treated for a year. Then the antimalarials weren't working and my babesia test came back negative. That is when it finally hit me it might be FL1953 and sure enough I tested positive. Treating that has produced a complete turn around for me.
You have to be careful because he is in such fragile condition. He probably cannot handle aggressive antibiotics or antimalarials in his condition. I think the best bet is a transfusion. Babesia and FL1953 are both blood parasites so a transfusion would greatly reduce the load.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
If it's FL 1953 that wouldn't be accounting for the motile coccobaccilli, right? As FL 1953 is a parasite?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Did Dr. Kilani have any theories to offer with these results?
Still praying for you both Bea. You are an incredibly strong and loving spirit.
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
posted
Poppy, Galaxy Labs in NC is not a vet lab per se, but was started by a veterinarian (Dr. B.) who is a bartonella expert -- but also v. knowledgeable about other animal pathogens: I wonder if he could help?
And Bea, please remember there really are a lot of false negatives with babesia. But also, the WBC involvement makes me think of ehrlichia.
I was just reading last night how Lyme herbalist SB uses autumn crocus for ehrlichia for it's direct effect on white blood cells (this is in Healing Lyme) -- but the drug Colcichine IS a derivative of autumn crocus, and might be worth investigating for this effect alone (healing impact on white blood cells for white blood cell pathogens).
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
posted
Specifically what Healing Lyme says about Colchicine is this: "Colchicine normalizes abnormalities of lymphocyte and monocyte function and reverses abnormalities in neutrophil activity" (p. 192 paperback version).
Studies found it effective against Ehrlichia risticii and Anaplasma phagocytophila -- p. 194 (both have WBC involvement).
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Surely if he had erlichia or anaplasma, some lab would have caught it by now?????
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
sorry bea and steve, love you guys my prayers are and have been with you, in jesus name amen
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
| IP: Logged |
posted
Coccobacilli is bacteria which has a certain shape. In the past Steve had this show on his bloodslides several times. The F lab called it bartonella in 2007 then changed their reporting to haemobartonella a couple of years ago -- not sure what they are currently saying.
But there are many bacteria which are called coccobacilli.
Steve started using Clongen Lab which only says coccobacilli and does not try to name the bacteria. That bacteria decreasd from many to several to a few to none over the course of 1 1/2 years while we treated bartonella with rifampin and factive.
The swarming bacteria attacking the WBC showed up in 2011 I think for the first time.
The babesia like organisms have shown up several times from Clongen.
Please keep this discussion going if anyone has any additional info.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Please see Bea's latest post titled "Steve has passed on".
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
What I had hoped to get from the F lab was confirmation of the findings reported here -- but since I can't make any sense of that report I have no idea if the labs saw different pathogens or the same ones.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic