Topic: blood smear (babesia and other stuff) from Clongen is fairly inexpensive
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I just called Clongen Laboratories to get a test kit for their babesia species PCR test.
On a whim I asked about the blood smear that LymeMD talks about often- and it turns out to be relatively cheap, $100. I suspect that makes it competitively priced with a 'mill' lab's blood smears, but with a more skilled person interpreting.
The receptionist at the lab said that the director of Clongen personally does the smear inspections, which sounds like a good thing. They look for babesia and also report on anything else they see (without diagnosing, of course). LymeMD has written about this stuff quite a bit- they seem to see babesia as well as other strange parasites and bacteria in very sick patients' blood quite often, and the identity of the bacteria is one of those huge mysteries in Lyme treatment. there's been speculation that some of this is the 'bartonella-like organism', while other people have what seem to be protozoa.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
links: http://www.clongen.com/ www.lymemd.blogspot.com (there are a bunch of posts from about a year ago, when they were trying hard to identify the significance of these visible blood parasites)
-------------------- Symptom Free!!! Thank you all!!!!
posted
That price is considerly less than what hubby paid in Novemeber 2008. At one time the lab had stopped accepting blood smears from the public because they were overwhelmed with samples.
I wasn't aware that they were still doing smears except for thru certain docs. It is not listed on their lab requisition forms.
In my opinion this is a bargain -- it may not tell you exactly what you have but if something shows up then you know you need more treatment. Since hubby makes very few antibodies to anything and there are so many strains of babesia and bartonella this test can at least prove that there is an infection for some people.
I do wish the lab offered pictures of the slides though.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I consider this test for my son. But I am not sure if Igenex would be better ( if we do not consider the price).
My son was tested positiv for babesia microti ( which is now called theilleria ) at Igenex years ago. Fry tested negative then.
2010 he tested negative on Fry and I wonder if he should also do an Igenex again.
Bea, do you think Igenex or Clongen would be better if the Fry test is negative?
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
thats great Maria! how did you know what test it was to ask for? can you just call and say I want the smear that LymeMD talks about?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Basically, yes- I've called them twice this week to order test kits for myself and for other friends who are testing through a non-Lyme-literate MD, and they're really helpful on the phone (and I thanked them for that yesterday, too). I happened to know LymeMD's name so I mentioned that specifically when asking about the blood smear, and later in the conversation they asked me what doctor I see, so I think Bea might be right about them only doing this test for specific doctors, but it sounds like I'm going to squeak through. I'll let you know how it goes.
Here's what my notes say about the blood smear- one of those is the actual official name but they'll know what you mean if you ask about it (or your doctor does). They mentioned that LymeMD calls it a wet mount on the blog, but I think the first name is actually the 'official' one: blood smear for babesia and parasites wet mount and smear
Karenl, there's also a 9-species Babesia Species PCR test ($300), which I'll be getting. It tests for everything but b. duncani for some reason. The test for b.duncani is $200 more. I don't know the reason why they're separate. What I'll be doing since money is tight is getting the species PCR and then the blood smear, as I'm trying to narrow down whether I actually have babesia or if I have some other pathogen that responds to anti-protozoal drugs.
-------------------- Symptom Free!!! Thank you all!!!!
posted
I have a copy of my dd's results from Clongen. Maria is right, the name of my dd's test was called a Wet Mount & it was only $100.
Her result was reported as: small motile extracellular organisms. LymeMD states this is consistent with bartonella.
Posts: 269 | From VA | Registered: Jun 2005
| IP: Logged |
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I just posted this question on another thread, but will ask here too--
Clongen's test sounds really good and my LLMD thinks I might have babesia.
Can you be tested while on abx? Have been on them for 5 weeks now. doxy, zith, flagyl --none work for babs I dont think.
Posts: 1297 | From USA | Registered: Dec 2002
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I would think that if none of your antibiotics work for babesia, that it'd be fine to test for it with a blood smear.
My uneducated opinion is that a blood smear will only pick up infected red blood cells, and that in some people, those can be really hard to find in a babesia infection- so a positive test is meaningful but a negative test is NOT meaningful- it might just mean that you didn't have infecgted blood cells but could still have babesia elsewhere in your body.. It seems to cause some people a lot of symptoms without visibly affecting very many blood cells. One of the theories is that it might be in the bone marrow, or in other organs like the spleen (I think LymeMD recently posted a list of possible sites).
The PCR test we're talking about, the $300 one, is looking for the babesia's DNA, and while I'm not sure how accurate it is statistically, I would THINK that it'd be better than looking at a smear. But I don't know, and I'm getting both of them done after messing around with babesia treatment with only a clinical diagnosis for a year and a half.
Incidentally, the babesia book update says something about using a 2-week (I think) mepron challenge to increase the chances of testing positive for babesia. It's only one LLMD's opinion but I believe him on that one. I do'nt remember now which test he was talking about but I think it was a PCR test or something like that, not the blood smear.
The reason I'm getting the smear as well is that I'm wondering if I have one of the 'other' unidentified things that CLongen and Fry Labs sometimes see in patients who are exceptionally sick. It's not totally clear what the treatment is for the 'motile organisms' but sometimes doctors go after them with bartonella treatment. It's not even totally clear if we're talking about one or more different kinds of blood parasites in the people who have them.
-------------------- Symptom Free!!! Thank you all!!!!
Actually the test for babesia in the babesia book is a totally different test. It does involve giving a babesia med as a challenge. What the test is looking for is an increase in a specialized subset of eosinophils after a challenge of an antiparasitic med. Do not know anyone who has had this test.
I would give the link, but that is not allowed per LymeNet rules because of the doc involved.
I do know that when hubby had G.I. parasites his eosinophils were normal and only became elevated after he started treating for the parasites.
As for the babesia PCR test -- do not really think that is any more accurate than a PCR test for Lyme. Will give lots of false negatives.
I can certainly understand wanting to have some sort of positive test result so you know you are treating the right infection. That is one of the most frustrating things about tickborne diseases.
Marz -- When hubby had his first bloodsmear from F lab he had already been on quinine and clindamycin for a month (had previously tried this treatment for 2 four month cycles). So when the F lab showed the ring form of babs while on babesia meds we knew we needed to try some other babesia treatment. Hubby was allergic to mepron and could not tolerate the psych effects from Larium.
Hubby did finish out the 4 months on quinine and clindamycin and then treated with primaquine and chloroquine. After that his 2nd bloodslide from the F lab did not show babesia, but still showed the haemobartonella or mycoplasma or whatever the mystery pathogen is.
KarenL,
The Clongen bloodsmear that hubby had done we think showed the same thing that had previously been found 2 times on the F lab blood smear. It is hard to know for sure as with F lab you get a picture and with Clongen you get a verbal description -- but neither lab can tell you what the bacteria actually is.
By doing the bloodsmear you are looking for both babesia and bartonella or other bacteria -- so it covers much more than just a simple babesia PCR test.
As for the PCR testing -- I think both IGeneX and Clongen do a good job of that. Have read that a multiple species test like Clongen does may not be as sensitive as if you only looked for one species at a time. But of course there are not any specific tests available from any lab for many of the 20 or so babesia species.
Personally -- I would do a Clongen blood smear. If that showed babesia then I would do some sort of additional babesia testing -- LymeMD doesn't seem to think it matters what species a person has. But many LLMD's say the WA-1 is much harder to treat. If you were planning to treat with an expensive med like Mepron I would want to know up front if I had that species if possible.
And the eosinophil testing might be another option.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I thought he-who-shall-not-be-named was talking about a more conventional test responding to a challenge. Is there a babesia antibodies test or do we not produce antibodies to complex organisms like that? The eusinophil test he talks about is really experimental, I have never heard of anyone doing it.
-------------------- Symptom Free!!! Thank you all!!!!
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Maria,
if you respond to anti-protozoal drugs I would recommend the biofilm test of Dr. F.. He finds often a protozoa in the biofilm and also many other bugs like chlamydia and there a viruses...and he talks to your doctor. You get a nice picture of the bugs for your living room wall.
The bloodsmear is a totally different thing and for the protozoan you need the biofilm. Flagyl-minocyclin-biaxin-plaquenil is his way to go. I react a lot to flagyl amd mino.
Bea: we did the 28 different babesia PCR at F. Is nobody doing Igenex?
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Thanks, Karen. How much is that test, if you don't mind me asking?
-------------------- Symptom Free!!! Thank you all!!!!
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Great info guys! Thanks.
If one does find out that they have these bugs - what are the treatment options?
Do people actually get better from drugs or herbs? Are there any studies of percentage of cure rate from taking the various drugs, herbs, supplements vs. the type of bug?
I see so many people saying that they took the drugs but still did not get better.
Does it really give you an advantage to know that you have one of these mystery bugs or which type of babesia you have? I hope this isn't a really ignorant question but I just have so many doubts about all of this.
One day XMRV is the big news, one day it seems like babesia is the big news, one day everyone wants to go to Germany to treat with infrared light, etc. There are alot of treatment & diagnosis fads. I've been dealing with this for 15 years. I know I'm not the only one but it does get old after awhile...
I can't tell you how much I've wasted on tests & treatments that were unnecessary.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
I think it was 87206 and 87205 was about 650.00. Ask when you order the kit is this is right for the protozoa. I can help you more if you need help for the exact order.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
Bartonella/mycoplasma and babesia require somewhat specific meds and while there is some overlap with lyme meds there are other meds that are specific for these pathogens. To me that is the primary reason for doing these tests.
As for knowing which strain of babs -- that may or may not be important. But if I was taking something as expensive as Mepron it would be nice to know at the start of treatment that it could easily require being on the med for a year or longer instead of maybe only needing to take the med for 6 months. And knowing the strain might provide that info.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I'm mostly trying to 'rule in' bartonella or BLO (I'm also getting a bart test after testing negative a while ago) so I can know if I should keep pursuing that angle. I'm pretty sure I have babesia. I'm wondering if it's actually babesia or something else that's protozoal- my 'stuff' seems to be hard to treat, and it'd help if I knew that there was a different organism that happens to somewhat-respond to antiprotozoals, or if perhaps some other bacteria is at play, in which I'd be pursuing the BLO/F lab angle and looking at more antibacterial therapy.
-------------------- Symptom Free!!! Thank you all!!!!
posted
So do you still need to have a doctor to order the smear?
Posts: 758 | From now TX | Registered: Mar 2001
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
YES!
Unfortunately, there's no way around that.
One thing I've found while getting friends with suspected Lyme to try and test with 'good' labs, is that if you can walk into your regular doctor's office with the lab test kit all ready, they're more likely to run the test than they would if you didn't have the kit.
I think I actually got my initial WB done this way- I had the most hostile Lyme denialist for a doctor when I tested, but had walked in with a test kit because some Lyme hotline at the time told me that I was likely to have a fight and that the ELISA was likely to be a problem.
IGenex and Clongen will both ship kits to the patient or to the doctor, so it's possible to get the kit without having your doctor order it, then you have to have them actually order a blood draw and mail the thing in. You pay for it by including a check when you send it in, not before.
-------------------- Symptom Free!!! Thank you all!!!!
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks Bea & Maria-
When I read the LymeMD blog - the doctor there said that he/she got better results with the babesia that seems to have fibromyalgia type symptoms with Malarone not Mepron.
There are over 100 strains of babesia. It's hard to know if all of those strains could be accounted for in the Clongen test...
Any thoughts about this? I never had typical babesia symptoms but now it seems people with fibromyalgia type symptoms can be counted in as potentially having babesia.
Is it really babs or something else? Now, they are calling babesia microti - theilleria... Does that require a different treatment than babesia?
If one's doctor is not up on all of this - do I have to teach him? Why do I still have to pay him for this? Man, some of the people here deserve honorary doctor degrees...
I just don't want to pay a new doctor $500-1000 for, yet, another first time visit to be able to interpret the Clongen test... Seems like the $100 smear is worth it just to know something about what we have... but is it really accurate?
When we do know, what are the treatment options? I know what Bea said about Mepron but are there any further options for treatment?
I see people posting here who did over a year of Mepron & are still ill or relapse when they stop. It doesn't seem too promising for what it costs - not to mention suffering from the herxes.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Malarone has two antimalarials in it, Mepron just one. IT makes a LOT of sense to me that you might see better results with the double-drug combo. It works that way in herbal medicine with infections, it definitely seems to work that way with drug-resistant malaria, and it makes sense that it'd work that way with babesia or anything related to babesia...
The tradeoff with Malarone is that the portion of it that is like Mepron (the atavoquone) is less bio-available than liquid Mepron. So you might be getting a more potent combination but you may not have as much effectiveness to the atavoquone portion of the combo. I suspect it'd be extra important to take it with fats, full meals, etc, and to make sure you're not taking something else that reduces it's levels, like Rifampin or milk thistle at the wrong time of day.
You can test for atavoquone levels through Quest or Labcorp or someplace like that, and it's probably a really, really good idea to do so, to make sure you're absorbing the drug properly and not doing something that interferes with it.
-------------------- Symptom Free!!! Thank you all!!!!
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Maria- Have you tried artemesia? I figured I'd try herbs before going for the abx. I don't know if the strains we have are really babesia. Now, they are being called Theileria... How is this similar or different than malaria?
There's a Chinese drug & artemesia combo that cures 96% of hard core malaria cases in 3 days ( http://www.cotecxin.com/en/products/ ). There's a bunch of real studies & news articles about it.
Unless they are bogus - I don't know why this drug is not available in the west. Why is it so difficult to treat babesia or Theileria when they can cure malaria in a few days with this drug? I have looked for this Chinese drug here but it is not available in the US for some reason.
I've seen alot of posts that people have to take Mepron or Malarone repeatedly & even then, in some cases, it doesn't work. Is there any data or studies as to the effectiveness of Mepron or Malarone against babesia or theileria?
These drugs are expensive - so, it would be nice to know the effectiveness before making a commitment to treatment with them. Then, it may be worthwhile to me to get the tests done & match the results with some drug.
Otherwise, I'm going to keep researching it & try the artemesia. I've been taking Nutramedix Quina, cryptolepsis extract, noni, resveratrol, etc. I am experiencing a kind of herx (increased pain) - so, I'm getting some kind of result from it.
I'm not against drugs but I just would like to know more before committing to a course of abx. I don't like the endless abx route concept for a bunch of reasons.
I appreciate everyones research in this area.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Every malaria drug cures uncomplicated falciparum species malaria fairly quickly, other than the risk of what they call 'recrudence' (ie relapse), or unless the malaria is resistant to the drug, as happens with quinine and some other ones (I studied this pretty extensively because I had a boyfriend who came back to the US from Africa with malaria that actually failed that drug treatment you're talking about).
Also, most of the stuff you hear about malaria is about 'uncomplicated' malaria- ie malaria minus HIV or malaria minus brain infection. What we have with Lyme suppressing our immune systems, or Lyme AND bartonella AND whatever other opportunistic infections suppressing our immune systems, is more akin to severe malaria such as that which kills people due to brain involvement. 'Uncomplicated malaria' is common, you may get it several times a year in some areas, and it does a HORRIBLE number on the health and economies of families living in those areas, so much of the research focuses on prevention and treatment of the 'simple' cases first.
The unfortunate difference between human babesia and one of the strains of human malaria seems to be that babesia is not cured that rapidly with ANYTHING. It's not that artemether is an unavailable solution here- it's just that none of the solutions work as rapidly in babesia.
They don't make this drug combo available in the US because virtually no one gets malaria in the US. Or so it's thought. ID doctors are really clueless about it here, not surprisingly.
The comparison between babesia and malaria is kind of crude- medicine usually makes assumptions about babesiosis based on malaria treatment, but the diseases dont' behave the same exact way. For instance, we don't have as many infected red blood cells as malaria cases do- and we're just as sick. It may be that babesia is reproducing and causing most of the damage in another area than red blood cells, such as spleen or bone marrow (I believe the bone marrow theory, if I understand right, the tests called the red cell distribution width would tell you about whether damage is being done there to the young red blood cells).
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Theileria is just semantics- they occasionally re-classify plants and other organisms based on advances in genomics. I think theileria is a broad category of protozoans that include some babesia species. I think "they're" still arguing about it.
-------------------- Symptom Free!!! Thank you all!!!!
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks for the info. If the genomic info is being reclassified - it may mean there are differences in treatment between, say, what used to be babesia microti or babesia duncani. There could be 100s of variables since there are a variety of types of babesia.
I read babesia duncani is a babesia-like organism... So, alot of this is not really clear to me.
I guess we use malaria as a model but it's obvious there are differences in the symptoms & treatment. I only started studying this about a month or 2 ago...
I'm not trying to be knit picky. I just want to understand my chances of getting well with the various treatments. Is there a difference in the treatment of the different strains?
Does it make it easier to treat if you know the strain? Would you choose one treatment over the other? If it's gotten into the bone marrow or spleen - what can you do about that?
I hope my questions aren't redundant. I'm sure alot of people here have been through the same stuff... I'll probably look at the unmentionable doctor's books & info when I have time.
He seems to have the most info about the subject.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I do'nt think people know the answers to most of those questions- also, confounding factors like where your Lyme infection is specifically causing your damage, and other coinfectoins, probably make this a not-one-size-fits-all treatment scenario.
The Unmentionable One actually has great insights, I highly recommend his main book on this subject. He's really negative in his update, but many people here have had much better luck than he suggests he sees.
-------------------- Symptom Free!!! Thank you all!!!!
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I am herxing or something from taking the herbs. Dr. no name has a book specifically on artemesia. It's pretty reasonable. The others are expensive. I really just want to know about what cures it.
I think I'm going to stick with the herbs & supplements for now. Thanks for all the great research. I'm not sure if the drugs are better than the herbs. That's a comparison I would like to see, as well...
Seems to take time to eradicate it - no matter which route you choose. I know a few people who did manage to get well on herbs & supplements alone without drugs. It's worth a try.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| 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!
Printer-friendly view of this topic