posted
Our son was positive for Babesia WA-1 through Quest. His titer was 1:4096 (norm is <1:256). He was on Lariam for 3 months which seemed to squelch all symptoms and his follow-up bloodwork all came back negative.
Fast forward to a couple of weeks ago, our LLMD sent a blood sample to IGENEX for Fish test and to Parisitology in AZ for blood smear. IGENEX was negative but Parisitology smear was positive for Babesia. From what I've read, if they can see it on a blood smear, it is 100% that he has Babesia in his blood. Would you agree with this statement?
When I inquired about which strain they found on the blood smear, I was told it was Microti. So..since all other blood tests have been negative for Microti and positive for WA-1, is it possible that the blood smear isn't Microti?
Or is it possible that these two are so hard to differentiate and even the experts get them confused? Is it possible to have both strains??
I'm one confused mother. The only symptoms our son is having is fatigue which could be from a year long battle with Lyme and co-infections. He doesn't seem to be getting better or worse, just stagnant. Perhaps it is Babs????
Thoughts?
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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t9im
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Babesia is difficult to diagnose for a couple of reasons.
One, commercial tests only cover two strains of a known 13 with a potential of 24+ (per advanced topic in lyme).
Two the parasite infects 1 to 2 % of the red blood cells. Lab's have been known to test the same blood sample with negative results and on the 7th time test positive. This is when the Lab is actually doing research work. In normal lab testing this can be easily missed.
Our daughter is now in month 7 of the Mepron and Zithromax protocol. Our MD has indicated it is a minimun of 8 months to erridacate the parasite. While my daughters Babs symptoms have improved in the last month I don't think she will be in the 8 month category.
Lyme complicates the treatments and then the co infections complicate the lyme treatment.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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TF
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It is possible to have both strains of babesiosis. I have a friend who was recently told she has both strains. However, the doctor is not concerned because the treatment is the same no matter how many babesiosis strains you have.
Incidentally, this is the first person I have met with 2 strains of babs, and I have had contact with lots of lyme patients over the last 7 years.
Maybe this is what is infecting people presently and not what was infecting people in the past. For sure, it is taking longer to eradicate babesiosis than it used to back when I was treating (over 5 1/2 years ago).
I have heard that the strains are getting stronger. Maybe it is more like the patients are getting more than one strain at a time. Who knows.
For years I heard that babesiosis duncani (WA-1, as it used to be called, standing for the state of Washington, strain #1) was harder to get rid of than babesiosis microti (the so-called east coast strain). And, those with duncani did seem to have a harder time curing it.
But, now more and more people are having a harder time curing babs, seems to me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tim...I hope your daughter improves daily. It is so hard to watch our children suffer with this disease.
TF..I have a feeling that being infected with multiple strains is going to become the norm. Because I don't understand the testing procedures and am not familiar with all of these labs, I tend to be a bit skeptical when I hear results.
Parisitology in Arizona is completely new to me. Have you heard anything about this lab?
The CDC told one of our doctors they did not agree with Quest Labs Babesia testing. Our son was highly positive for WA-1 with Quest. The CDC tested his blood and it was negative for Babesia. They held his sample for a month so that doesn't surprise me.
No doubt the testing is an issue but I have to think that if Babesia was seen on a blood smear, he has it. I'm wondering, however, if Babesia looks like other things under a microscope (other than Malaria)?
Thanks again..I appreciate your responses.
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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TF
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My now famous lyme doc told me that since the babesia was seen by the FISH test (high powered microscope, technician looking for the parasites within the red blood cells), I definitely had it.
My tests were done by Igenex. I got the microti IgM and microti IgG plus the FISH. The microti IgM and IgG were both negative. But, the FISH was positive.
Here is what the Igenex site says about the FISH test:
"Babesia FISH Assay
The Babesia FISH test is in vitro fluorescent in situ hybridization microscopic tests for direct detection of Babesia species (e.g. B. microti, B. duncani) rRNA in whole blood smears from patients of all ages with signs and symptoms of Babesia. The test is intended for use by clinical laboratories for the diagnosis of human babesiosis infection.
Principle:
The Babesia FISH test detects the specific ribosomal RNA (rRNA) of the Babesia genus (e.g. B. microti, B. duncani) in the blood of infected patients. The FISH assay is performed on a whole blood smear. The whole blood is smeared and fixed onto a glass slide. The fixed blood is hybridized to a fluorescent labeled Babesia genus specific probe that is targeted to the rRNA of Babesia. Excess probe is washed away. The smear is counterstained and viewed under the photomicroscope microscope at 1000X using a specific filter for the selected dye. Since, the rRNA is present in the cytoplasm, it causes the parasite to give a fluorescent signal while maintaining its morphology."
You can assume that your FISH test from the other lab is the same, or you can call your lab (or check their website) and see.
My lyme doc trusts the Quest babesia duncani (WA-1) test. He often sends patients' blood for this test if they test negative for microti through Igenex. (This is what his patients have told me.)
I have not heard of Parasitology in Arizona (The Parasite Center in Scottsdale, Az.) Sorry.
Just want to point out that I haven't been treated for lyme for almost 6 years. So, I don't have any current experience with which labs the docs are using. I only know what other patients are telling me.
I believe that the FISH distinguishes malaria from babesiosis microti with no problem. If it didn't, it would not be considered an acceptable test. So, I believe your son has babesiosis.
Posts: 9931 | From Maryland | Registered: Dec 2007
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timaca
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Imhis4life~ You could consider getting your son tested at Focus Diagnostics lab. They have a Babesia WA1 test (and a Babesia Microti test)
Your doctor would need to write that the blood has to be sent to Focus lab. Print out the lab requirements from the links provided above. Focus is owned by Quest labs, so you can work with your local Quest lab to get your son's blood to Focus.
As a matter of fact, look at the Quest lab result that you got and see if it was sent to Focus the first time....it might have been.
I am not familiar with the lab you are talking about in AZ, unless it is Dr. F's lab.
It could be that your son has cleared the infection and it will just take some time for him to get rid of the fatigue. If that is his only symptom, then that could be the case.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Timaca, thanks so much. The positive WA-1 tests are all from Focus.
We have a world class LLMD so I feel confident that her advice is solid. Just can't seem to wrap my brain around the complexity of testing and treatment.
Thanks again..
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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Regarding the Parasitology Center in Arizona -- I checked their website and have some questions.
Did the lab provide you a photo of your sons bloodslide?
Did they provide treatment suggestions?
From reviewing the website it is unclear to me whether they simply do a visual microscopy exam and make an educated guess as to the species of parasite (such as babesia) or whether they do additional testing to confirm species. If your report does not explain their lab techniques then I would call and ask them some questions.
Many have learned from doing bloodslides with the F lab that there are many species of cocobacilli which visually under a microscope look alike but the DNA identifies them as different species.
I think that the 2 species of babesia in question differ regarding their overall size but I could be wrong. You could at least ask for a description of the size of the parasites observed in relation to the red blood cells.
Hubby is awaiting results of a bloodslide from Clongen lab. If his dumbbell shaped bloodborne parasite shows up again then I will probably send a sample to this lab in Arizona.
The Clongen lab might be another source you could consult for yet a 3rd opinion on your son.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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Focus caught my WA-1 too IF they are legit and the test is meaningful. I know Focus is good, but this particular lab may be off. I don't know.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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timaca
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Focus is a good lab. My ID doctor uses it for all my infectious pathogen testing except for Coxsackie which gets tested at ARUP lab.
I have not been tested for WA-1 (maybe I should be) but I'm negative for Babesia microti at Focus.
Amazing to me that the CDC discounted a positive WA-1 test from Focus lab!!
Hope your son feels better soon.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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seekhelp
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NOTHING the CDC does surprises me after this. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Bea...I am going to ask for a photo of the slide. I see our LLMD tomorrow and will see if she already has one, if not...I'll go to the source.
Parisitology in AZ did not give me treatment options. I didn't ask since we are seeing an LLMD already. The owner was certain he saw Microti.
I'd sure love to have that slide reviewed by someone else just to confirm. I'd just like to have the 2nd opinion so I can walk it to the CDC and have a little chat with them. Thanks for all your helpful info.
Timaca and Seekhelp..I hate to fuel your frustration with the CDC but they tested our son's blood after Quest found it three times but the CDC test was negative. Additionally, they were supposed to do a blood smear but refused since the initial test they did was negative.
Instead of doing their job, they tainted the reputation of Focus Labs indicating to an Infectious Disease Specialist that their testing was flawed and not accurate. He believed them. Hmmm...how does your body make antibodies to something that is not in your system?????
The ironic part is that this Infectious Disease Specialist uses Focus Labs. In fact, our son has some immunology issues that we didn't know about and he (specialist) based his opinion on test results from this very lab. So, if he doesn't believe the Babesia test is accurate, what makes him think the immunology test is accurate?
Needless to say, we have been so frustrated with the CDC. Of course, they don't believe he ever had WA-1 because that isn't found in Virginia. Don't get me started. ha.
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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timaca
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Imhis4life~ Well if your son had high antibody titers to WA-1, received appropriate treatment for WA-1, got better (except for fatigue) and the antibody titers dropped to normal levels, that would indicate to me that there was an infection with WA-1 that had been appropriately treated, and was now gone.
It's amazing to me (but not totally surprising) to see the CDCs response. I'm even more amazed that your ID doctor believes the CDC now instead of what he sees in the lab data and clinically with your son.
What does the ID doctor think is wrong with your son? Does he believe he once had WA-1 or not?
If your son has only fatigue remaining, I'd likely (1) test him for other tick borne pathogens to make sure nothing else is present and (2) let him rest a lot. With any luck, he will fully recover with time. If he is still fatigued after 6 months, I'd start looking at other pathogens that could have reactivated.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I completely agree with your first paragraph. I never doubted he had WA-1 since the treatment made a huge difference in his health.
By way of background, we used to use the military for our health care. We tried to enlist the help of Infectious Disease but it was clear that they didn't agree with our viewpoints on treating Lyme and coinfections.
Our son almost died last year because these doctors weren't listening to us so we sought out an LLMD and haven't turned back. Even after all the evidence I've shown the Infectious Disease Specialist, he still listens to the CDC.
Why waste my time on Infectious Disease? Well...to help the next kid that comes their way so they won't be told they are faking symptoms and need counseling.
Since we are being seen by a great LLMD, she checks on new pathogens/parasites regularly. She did tell me at one time that sometimes Babesia can re-emerge after treating Lyme. If this is true and he tested positive for WA-1 to begin with, I'd think this is what they would have found on the blood smear.
That is what has prompted my questions. Two strains or one that has just re-emerged?
Thanks for your insights. It's so nice to talk things through with others going through this craziness.
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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timaca
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Hi Imhis4life~ I have two great ID doctors helping me, and for that I am grateful. I'm glad you are trying to educate your ID doctor.
I guess if I were in your shoes I'd rerun the blood tests at Focus since that is what spotted your son's problem in the first place....see what they say. If he never had microti, I would doubt that is the one showing up now.
But, I'm not a doctor....
Good luck. I hope your son gets all the way well.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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momlyme
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Be careful trying to educate your ID doctor. My LLMD who I love dearly... and am grateful for every day... is being harassed by an ID duck. They can't be educated. They just dig their heels in and start quacking.
I wish their was a duck emoticon.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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