Met with hubby's LLMD today. It was supposed to be just for lunch, but we ended up spending about 3 1/2 hours going over his hospital records and talking to Dr F.
Hubby's doc agrees that here were numerous episodes of hemolysis while hubby was in the hospital in the ICU for a month which the I.D. docs basically ignored. Whether they want to believe it or not there is more and more evidence of an active blood borne parasite infection while hubby was hospitalized and on the ventilator.
And yes, I did get fed.
The test results are more or less what I expected. Also of note -- the blood for the test was drawn shortly after hubby passed and it was day 6 on Mepron and Zithromax.
If someone is more computer literate than me I can send an email with the report attached and I would like to have the color pictures posted here. I can't even get my new printer to print the PDF file in color, plus with my old computer it took 3 tries to get the file downloaded and it finally downloaded after 5 minutes the last time.
It will be late tomorrow before I can get back to anyone, but it would be very helpful if someone who knows about computers could contact me at the address below. Just tell me what your LymeNet user name is.
Seibertbb (at) yahoo.com
I forwarded the files to hubby's LLMD while in the office and we viewed those emails on that computer so I do know the files can be sent email.
Anyway -- the discussion with Dr F added a lot to the report. Based on that discussion 2 additional tests will be done which may finally give some answers.
The FL1953 test -- NOT detected by PCR. But here is the big news. Few biofilm community-like structures were observed. Visible structures suspect of protozoan embedded in biofilm communities, indicated by red arrow.
Per Dr F himself his PCR test does not come back positive in 35% of cases which actually have the FL1953 protozoa!!!!!!!!!!!!!!! It is my understanding that the additional testing can confirm that the visible protozoa on the stained smear is FL1953.
This was the first time hubby had had the FL1953 testing done. Had done the old F lab testing back in 2007 a couple of times, but then switched to using Clongen Lab.
Bartonella species and Borrelia species were both negative by PCR -- no big surprise there.
Now for item number 2. Babesia species by PCR -- Potentially detected. For another $100 the lab is going to try to identify the exact species of babesia. So according to the doc hubby still had both FL1953 and babesia (even though the babesia was not visible on the stained smear). But Clongen did find something resembling babesia on the last smear they did (both wet mount and stained smear)-- which was Day 1 on Mepron and Zithromax.
Item 3 -- Stained smear report -- Rare (1-4 organisms per total fields observed) coccobacilli adherent to erythrocytes -- indicated by yellow arrow. Supposedly the additional testing will be able to identify this bacteria. Not sure if this is the swarming bacteria attacking WBC's that Clongen saw on the 2nd blood slide or not. Or maybe it is klebsiella or enterobactor from the bacterial pneumonia acquired in the hospital or maybe pseudomonas also acquired in the hospital or ?????????????? Lots of possibilities for this one.
Hubby's LLMD still does not understand why the apparent herx reaction to his babesia treatment caused the original lung inflammation that lead to respiratory failure (ARDS). Pubmed gets lots of hits with malaria and ARDS -- so I guess it could have been from either babesia or FL1953 (which supposedly has some gene sequences identical to malaria).
We will probably never know if hubby had both infections for all 12 years or if one was a new infection from the 2 dog tick bites he got in the spring. I think they were dog ticks but never got an I.D. on the tick species.
But it will be even more confusing if the babesia species does not turn out to be babesia duncani -- started with very high titers to that in December 2010 (first time tested for that species -- titer of 1:2056).
It will probably be a couple of weeks before the additional testing from F lab is complete. Maybe by then I will have been able to talk to Columbia and learned something from them as well.
There are several legislative issues and legal issues I discussed with hubby's LLMD and I am not going to stop searching for answers. It will be tough emotionally, but this is too important to too many people to quit now.
Probably in January after the election and holidays wind down I will be asking for research help with various issues. Anyone who wants to be involved is more than welcome to help -- it may be something as simple as sending an email or making a phone call or doing a google search for someone's address. Or maybe just brainstorming ideas. I will post a new thread in general support with more details later.
I want to close by saying I am still getting 1 or 2 sympathy cards a day and I want to thank everyone who has sent an actual card or just posted on one of my threads here.
Bea Seibert
Posted by Catgirl (Member # 31149) on :
My heart is still breaking for you Bea. You are such a kind soul to share what you found on Steve's blood work. And thank you so much for your continued posts here. They are greatly appreciated and truly help us all. I only hope that you can find some peace. Hang in there.
Posted by lax mom (Member # 38743) on :
Bless your heart Bea.
I'm so sorry IDSA, but we have Bea Seibert on our side...you've never met an advocate like her...and you'll wish you never did Posted by Dekrator48 (Member # 18239) on :
Thank you for the update Bea.
I am praying for you and I appreciate so very much how dedicated you are to fighting this fight, not only in Steve's memory, but for all of us.
I hope you get the answers you need.
May God strengthen you and comfort you everyday.
Posted by derk diggler (Member # 31903) on :
my heart goes out to you also, but just to clarify, are you basically saying that there was more parasitic activity involved that made him so ill, sorry, im still learning, much love and prayers
Posted by cht girl (Member # 26170) on :
Thank you so much for your dedication, not only to your wonderful husband, but to all of us still searching for answers.
You truly are an inspiration. We are all still praying for you.
Posted by Jane2904 (Member # 15917) on :
Thanks Bea for all you do.
HUgs
Posted by a mom (Member # 23920) on :
Hugs Bea. I will respond to your email. -Janet
Posted by Lymetoo (Member # 743) on :
Thank you for sharing, Bea! We all appreciate your advocacy. We still miss Steve and I know your heart is still broken. Hugs and Love to you.
PS.. There is an article in the latest Reader's Digest about hospital autopsies that you may or may not want to read. It's all about a big legal battle someone had.
Posted by AuntyLynn (Member # 35938) on :
Bea -
When it's time to dig into that research, please do not hesitate to PM me for any help that you might need - anything.
Meanwhile, my household will keep you in our hearts and prayers, and will always remember Steve with much respect and love.
Posted by lyme in Putnam (Member # 11561) on :
Thank you. For what you've been through is more than trauma. God gave you strength and may he continue to help through this time.
Posted by nefferdun (Member # 20157) on :
I hope you find answers Bea. And I hope you find peace too. Thank you for being there for all of us.
Posted by seibertneurolyme (Member # 6416) on :
Derk -- One of the biggest problems for chronic tickborne illness patients is knowing what infections they have. Yes there is some overlap with meds -- some meds such as rifampin or doxycycline for example can treat multiple infections. But other meds such as factive or mepron are generally only used for one specific infection.
There is much overlap in symptoms between the various infections and the tests are really not very reliable so most good docs treat based on symptoms and response to treatment.
Hubby knew that he had babesia and had treated that for years -- very aggressively for the last year and a half. But he did not know and really did not think he had the new protozoa -- FL1953.
And not knowing that may have contributed to his death. There is no way to know for sure. But he never tried a low fat diet and he also took very high doses of arginine which he felt was helpful.
He did take ivermectin and other malaria and parasite meds and herbs. He also took high doses of lumbrokinase and some wobenzyme which obviously must have helped as the number of biofilm communities was low.
But by not knowing about the FL1953 infection he may have missed some possible treatment options that could have helped.
ARDS or lung failure is considered a rare side-effect of babesia. There are maybe half a dozen cases reported in the medical literature -- but as hubby's LLMD pointed out to me yesterday -- just how many actual documented cases of human babesia are there in the literature? Not sure of the exact number but I do know there are only twentysome journal articles discussing Babesia Duncani (WA-1)and not even all of those deal with human infections.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
I just posted a new thread in General Support titled -- Thanksgiving Request. Please check it out.
Bea Seibert
Posted by Haley (Member # 22008) on :
Bea. I'm so glad that you are here.
I think about your situation often.
Maybe you should become an MD I'll be your first patient.
I will help with research if I can. The only problem is - my brain doesn't work - hahahahaha - minor details. I am taking a biology lab so that I can learn how to use a microscope. I will then be looking at my own blood and tissues. I came across a book from the 1940s called tropical diseases, written for physicians. Quite fascinating, it has every single type of weird illness you can think of, lots of information on parasites. A looooong chapter on Malaria.
Anyhow. I am going to send you an email. I have a couple very simple questions.
Many blessings
Posted by 2young2dieMom (Member # 25434) on :
Your research and advocacy are much appreciated especially after your personal loss. I continue to look for your posts.
I have FL1953 and am now having difficulty breathing. I just got a cpap. I have also been diagnosed with ALS. I'm 52 and my only child is 16.
Posted by Pinelady (Member # 18524) on :
Thank You for sharing even in your pain....We can all learn from your experiances.
Posted by terv (Member # 29410) on :
Bea,
You said
quote: ARDS or lung failure is considered a rare side-effect of babesia.
How do you know that your husband's babesia caused the lung-failure? Did you do a biopsy of the lung tissue?
My mother is going through a similar thing. Lyme treatment causes the lung inflammation. Her lungs are functioning at 20% and the pulmonary doctor doesn't know why she is still alive.
She definitely has babesia probably with a host of other things. Right now she cant treat anything because of her lungs.
Posted by seibertneurolyme (Member # 6416) on :
terv,
I feel your pain. Reading of someone in a similar situation is exactly why I am still trying to make sense of what happened to hubby.
The answer is I do not know 100% that babesia caused the lung failure. But I do know that the hospital did not know the cause and they ruled out everything else they could think of.
The medical literature does list ARDS as a rare complication of babesia and that is what hubby was treating. ARDS is fairly common in malaria and it usually shows up a few days after treatment is started -- just like hubby's symptoms showed up when he added in the pulsed flagyl to a new med regimen.
The CDC reporting form for babesia includes ARDS as something to report as a possible babesia complication.
Still waiting on the autopsy report which should include info on the lung tissue -- but was told that could take 6 months and it has only been 2 months.
The hospital did a bronchoscopy and that is when hubby ended up on the ventilator. He was headed that way anyway as his oxygen requirements were increasing and the bipap was at about maximum usefulness even before the bronchoscopy.
The only thing they found from the biopsies taken during the bronchoscopy was mild fibrosis and debris. The debris and the lung tissue and fluids were of course never tested for babesia but were tested for many other things.
Fibrosis means scarring. Fibrosis would have to be severe to cause lung failure and at least the samples they took did not show that.
Hubby had some pulmonary nodules that had been present since at least 2003. He had had CT scans of the lungs done every 6 months for about 5 years to rule out lung cancer and even had a normal pulmonary function test in 2010 when the pulmonary docs said there was no need to continue follow ups. One or two of the nodules had calcified at that point.
Iniitially in 2003 hubby herxed when he got 125 mg of IV Rocephin administered during an IPT procedure (Insulin Potentiation Therapy) -- his first antibiotic. When he got out of the hospital he had severe snoring which was a new symptom and a mild unproductive cough. He ended up getting a Cpap for sleep apnea and the pulmonologist did the original CT scan and also a PET scan and bronchoscopy. At that time all they found was inflammation etiology unknown.
It is really ironic that he had had virtually no lung issues since 2003 until 2012. He never had the shortness of breath many with babesia have. He did have an unproductive cough that showed up from time time and usually was triggered by babesia treatment.
He stopped using the cpap in 2007 I think it was as he felt it was no longer needed.
I wish I had some advice for you. All I know is that lung function is not something that can be recovered easily or quickly once it is lost.
If babesia triggered the ARDS then it is my understanding that the only hope hubby had of recovery was to continue the babesia meds in the hopes that the herx type reaction would stop and the babesia would not do further lung damage.
But hubby was off of those meds for 3 weeks and during that time he had the sepsis from the bacterial pneumonia he acquired in the hospital which further damaged his lungs and the babesia or FL1953 or whatever blood borne parasite he had continued to do damage -- as indicated by the hemolysis and other babesia symptoms of sweats and fevers.
I really don't know what to tell you to do other than to talk to as many docs and specialists as possible and do everything you can nutritionally to support lung function. Don't know if herbs would help or not in this situation.
Has your mother had a CT scan or bronchoscopy done? I think there is a procedure called a bronchial lavage where they wash out the lung tissue and test the fluid for pathogens -- not sure if that is only done as part of a bronchoscopy or if it could be done by itself.
I would be checking to make sure there is not some other pathogen such as mycoplasma pneumonia that could be contributing to your mother's lung issues.
Please let us know if there is anything anyone can do to help. You might want to start your own thread.
I see you are from Virginia which worries me as we both know the attitude of the physicians here regarding tickborne illnesses.
You can send a private email to me at the address below if you have any more questions.
Seibertbb (at) yahoo.com
Bea Seibert
Posted by terv (Member # 29410) on :
I will email you privately so I don't hijack your thread.
Interesting about the flagyl though. My mom thinks that the flagyl is what sent her to the hospital last month. She said she was doing "fine" until 4 days after the flagyl.
Posted by seibertneurolyme (Member # 6416) on :
terv,
Will look for your email.
But I want to add this info to this thread also. One of the things that hubby did that he felt was helpful back in 2003 or maybe it was 2004 -- he used inhaled glutathione with a nebulizer. I think he got the glutathione by prescription from Medaus mail order pharmacy.
That is something your mom should definitely check on -- it is not extremely expensive and might be a big help.
Bea Seibert
Posted by kelmo (Member # 8797) on :
Just an FYI, Bea. I made a routine follow up appt with Dr. F today and found that he is only taking patients a couple of days a week now. The other days he is personally working in his lab. Maybe something in your husband's test means something to him. I don't know.
In other words, he is personally giving up the day to day practice to devote to research. I'm not sure what the report meant that you got. I would've been really puzzled by it. I hope you get better answers.
Posted by seibertneurolyme (Member # 6416) on :
Kelmo,
Thanks. I had called Dr F about a month ago to see about scheduling an appointment and found out he was seeing patients only 2 1/2 days per week and the other days they would be seen by a N.P. Did not realize though that that was because the doc was actually working in the lab on the other days.
Will be calling the lab Monday for more info. Haven't made a decision yet about whether to go see the doc personally or not.
Bea Seibert
Posted by LymeCFIDSMCS (Member # 13573) on :
I just want to mention that in the animal studies I sent when Steve was in the hospital, WA-1 babesia, or babesia duncani (as it was renamed) is FAR more likely to cause respiratory failure/lung problems than babesia microti.
So if it's considered a "rare" complication in humans, it is only because cases like Steve's and like mine (as you know I almost similarly died, diagnosed with babesia duncani and in resp. failure) have not been tracked in the medical literature -- probably because in most babesia-endemic areas labs only test for babesia microti and unless one has real lab-savvy it would be hard to get the right tests in time.
I know you know this, Bea -- but it seems important to say for others reading these posts.
Here are the abstracts on babesia WA1 (duncani) and respiratory failure.
J Parasitol. 1999 Jun;85(3):479-89. Endothelial cell changes are associated with pulmonary edema and respiratory distress in mice infected with the WA1 human Babesia parasite. Hemmer RM, Wozniak EJ, Lowenstine LJ, Plopper CG, Wong V, Conrad PA.
Source Department of Pathology, Microbiology and Immunology, School of Veterinary Medicine, University of California, Davis 95616, USA. Abstract
A C3H/HeN mouse model was established to study the pathogenesis of the human babesial parasites, WA1 and Babesia microti. To evaluate the course of parasitemia and the associated lesions, mice were inoculated intraperitoneally with either WA1-infected, B. microti-infected, or uninfected hamster red blood cells.
WA1-infected mice developed dyspnea and moderate parasitemias, after which death occurred. Babesia microti-infected mice experienced low parasitemias with no apparent morbidity or mortality. WA1-infected mice were thrombocytopenic but not anemic. Hemograms for B. microti-infected mice were similar to controls.
Postmortem examination of WA1-infected mice revealed prominent lesions in the lungs, including pulmonary edema and intravascular margination of leukocytes. No pulmonary changes were detected in B. microti-infected mice. Blood gas measurements of WA1-infected mice showed reduced oxygen saturation and pH, and increased carbonic acid compared to controls, indicating hypoxia and respiratory acidosis.
Ultrastructure studies of WA1-infected lungs showed hypertrophied endothelial cells containing transcellular channels associated with protein-rich intra-alveolar fluid. Endothelial cell activation was demonstrated by an upregulation of intercellular adhesion molecule-1 in the lungs of WA1-infected mice.
The results suggest that recruitment of inflammatory cells to the lungs in WA1-infected mice induces endothelial cell alterations, leading to pulmonary edema and acute respiratory failure. PMID: 10386441 [PubMed - indexed for MEDLINE]
Lab Anim Sci. 1996 Oct;46(5):507-15. Comparative pathogenesis of human WA1 and Babesia microti isolates in a Syrian hamster model. Wozniak EJ, Lowenstine LJ, Hemmer R, Robinson T, Conrad PA.
Source
Department of Pathology, Immunology, and Microbiology, School of Veterinary Medicine, University of California, Davis 95616, USA. Abstract
The pathogenesis of a newly recognized, molecularly and antigenically distinct human babesial isolate (WA1) and Babesia microti, the common cause of human babesiosis in the United States, were compared in a Syrian hamster model. A group of 33 adult female hamsters were inoculated intraperitoneally with either WA1-infected, B. microti-infected, or uninfected hamster erythrocytes.
All WA1-infected animals became parasitemic by postinoculation (PI) day 3 or 4 and were severely lethargic and dyspneic by PI days 6 to 10. Death often occurred spontaneously by PI day 10, with parasitemia of 12 to 90%. Hamsters inoculated with B. microti became parasitemic by PI day 7 and developed peak parasitemia (42 to 60%) by PI day 14 that subsequently decreased to low or undetectable values.
Although the B. microti-infected hamsters developed severe anemia, they generally remained asymptomatic. Postmortem examination of WA1-infected hamsters revealed intravascular aggregates of large mononuclear inflammatory cells that occasionally occluded small to medium veins, pulmonary leukoclastic phlebitis, thrombosis, and multifocal coagulative necrosis in the heart, spleen, lung, and liver.
No vascular lesions or areas of coagulative necrosis were detected in any B. microti-infected or control hamsters. The results of this study suggest that marked leukocytosis followed by acute necrotizing phlebitis resulting in disseminated intravascular coagulation, thromboembolism, and infarction may be central to the pathogenesis of WA1 infections. PMID: 8905583 [PubMed - indexed for MEDLINE]
Here's a case in a baby developing respiratory distress from WA1 (babesia duncani)
Transfusion. 2002 Nov;42(11):1482-7. Investigation of transfusion transmission of a WA1-type babesial parasite to a premature infant in California. Kjemtrup AM, Lee B, Fritz CL, Evans C, Chervenak M, Conrad PA. Source Department of Pathology, Microbiology, and Immunology, School of Veterinary Medicine, University of California, Davis 95616-8745, USA.
Abstract
BACKGROUND: A premature infant in California developed respiratory distress associated with infection with a protozoal parasite, Babesia. The infant had received two blood transfusions, one from the father and one from an anonymous donor (Donor A). This study describes the follow-up required to identify the source and species of Babesia that infected the infant.
STUDY DESIGN AND METHODS: At the time of the infant's illness, whole blood from the infant, father, and mother was evaluated for Babesia infection. Similar evaluation of whole blood from Donor A was performed 2 months after the suspected donation to the infant.
Samples were tested using blood smear examination, serology, PCR, and hamster inoculation. Identity of the recovered Babesia parasites was confirmed by DNA amplification by PCR, genetic sequencing of the 18S gene, and phylogenetic analysis.
RESULTS:
WA1-type Babesia was recovered from the infant. Neither parent was the source of infection. Serology and hamster inoculation confirmed WA1-type Babesia infection in Donor A. DNA sequences of the 18S gene from the infant and donor isolates were 100% identical.
CONCLUSION: WA1-type Babesia infections may be difficult to detect among blood donors because such infections can be subclinical.
This is the second WA1-type Babesia transmission via blood transfusion and the first in an infant. Physicians in the western United States should consider Babesia as a possible cause of nonspecific febrile illness after a blood transfusion.
![[group hug]](graemlins/grouphug.gif)
![[Wink]](wink.gif)