Topic: Clongen Blood Smear Results - More Confused
seekhelp
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I received my blood smear findings from this lab. I spoke to the director of the lab, Dr. Kilani, Ph.D.
He said I have a very 'memorable' smear and said it's very unusual. He said there is no doubt I'm ill and expected to be with results like I had.
My wet mount examination showed 'Scarce WBCs filled with round motile organisms, slight increase in eosinophil count.'
My Stained blood smear showed 'Scarce WBCs with dark purple round organisms were observed.'
He went on to say to see this much bacteria in a LIVE blood cell is not good and if you extrapolate this infection rate throughout my entire blood supply in my body, it's pretty severe.
He doesn't know exactly what it is, but said if he were to dedicate a full two weeks of time he thinks he could identify it. He said it's a 'research case.' Unfortunately, I'm sure I couldn't afford his time.
He said when narrowing it down, it seems very suspicious for ehrlichiosis (tested negative many times) or some strange parasite. He asked if I've been to third-world countries, which I have not.
No Babesia appeared, but he said that's not unusual given the small sample relative to the amount of blood in the body (same as he told Bea's husband).
I got a bunch of labs back from LabCorp too my ID doc ran. Strangely everything is looking better than before...ASO titer in normal range, WA-1 titer down from 1:2,048 to 1:512 now. negative for toxoplasma, EBV acute, CMV, Trichinella, HCV, and a normal blood culture (no growth).
What the hell is going on seriously? My CBC and MCB and all other labs ALWAYS perfect. The only odd thing is this esinophilic esophagitis, which seems like a big deal.
So what ALWAYS shows up for me after endless testing: elevated eosinophils - WBC, high WA-1 titer, high bilirubin, low CD-57, some positive Lyme bands, and elevated free plasma hemoglobin at times.
This chase is getting old. Something is wrong, but who knows. I don't see how you can get so many normal results feeling so horrible. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Well at least you do have some evidence of an infectious organism or parasite. I think that of the tickborne diseases only ehrlichia or anaplasma attack the white blood cells -- not 100% sure of that.
Can't remember if you were on doxy or not? But think you had a bad reaction (herx) on rifampin. Both of those meds would work on ehrlichia or anaplasma.
Pretty sure that ehrlichia can affect muscle and you have talked about feeling weakness in your legs before.
If I were you I would probably try treatment for ehrlichia/anaplasma next -- supposedly one of the quickest and easiest of the coinfections to treat. And then after that go after parasites and/or babs which is a more long term treatment.
There is one more lab I have been reading about that also does bloodslides if you think you need a 2nd opinion.The Parasitology Center Inc in Arizona
Here is one case history regarding ehrlichia/anaplasma. Considering the source (Mayo) some of the info regarding various tickborne illnesses is inaccurate, but still it gives a pretty good overview of ehrlichia/anaplasma.
P.S. I think you should be encouraged that your WA1 titer came down. You felt bad on the meds and the titer came down so in my mind that pretty much definitely points to babs as one of your issues.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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Bea, I have had wicked head pressure on both doxy and rifampin. Two drugs I couldn't tolerate. Can one herx from those two bacteria? I thought it was only Lyme with some suspected herxing on Babesia and Bartonella drugs.
Yes, I've had terrible muscle problems. Always weak. Have no stamina. Can't walk any distances without my legs feeling rubbery.
I'm sure my ID doc will say this lab is seeing things that don't exist given my normal blood culture. I admit it seems odd too.
I asked a member here about that Parasitology Lab of AZ. They said it was a very bad experience and did not recommend the lab at all.
The rifampin gave me off the charts anxiety. I was only on 150 mg per day!
Your recommendation makes sense to me. The most consecutive days I took Doxy is 5 days. Rifampin for 3 days. It's the few classes of drugs never taken. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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A routine blood culture is actually a pretty useless test. Many bacteria or viruses require certain specific nutrients or temperature etc to grow. A "routine" blood culture frequently does not meet the requirements for many bacteria or viruses.
Not sure that treatment for ehrlichia or anaplasma actually fits the definition of a herx -- but in my opinion any time you are killing pathogens you might feel worse until you detox from the dieoff and from the drugs themselves.
It is probably the fact that you have multiple infections that may contribute to what feels like a herx.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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I do find the symptom list of these two coinfections very interesting and they fit well. I always assumed because I tested negative there was no way I had it.
Now I regret never taking a full course of Doxycycline. Stupid me.
Thanks for the feedback on the blood culture issue Bea. My ID doc believes they are the end all be all.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Here is one more case history. This is actually one of the first case studies I remember reading after hubby got sick. It definitely shows how symptoms can change and test results are unreliable and how the symptoms of the tickborne illnesses all overlap.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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Any other thoughts from all the bacteria experts here? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Pinelady
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I certainly not an expert. But would like to ask. Have you done any of the parasite protocols?
Seems to me we can't get rid of the bacteria and virus' because the parasites that are so hard to get rid of are packing them right back to us in the offspring that get missed...
Now on the other leg---they are wanting to do trials of Cancer killing chemo for MS...
So that should tell us something... http://www.sciencedaily.com/releases/2010/12/101227100826.htm "To put this into perspective, for some bacteria, one-fifth of their chromosome came from their enemy, and until our study, people had largely neglected to study that 20 percent of the chromosome," Wood says. "This viral DNA had been believed to be silent and unimportant, not having much impact on the cell.---"Up until now they ignored it---to make vaccines for profit."
If you look at how hard the parasites are to kill in other countries like SA...Its not too hard to see that a one dose fix is not going to do it...And maybe a month won't either...We need some real heap..
So awfully glad you at least have proof...It could help the rest of us in the big long run if you could find someone to help in the research to determine everything in there....Hugs.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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tick battler
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My kids never blood tested positive for ehrlichia but 2 years into abx treatment when we started electrodermal screening it showed up in all of us. It is was the easiest infection to get rid of - took about 3 to 4 months on the nutramedix herbs. I think Enula alone may kill it. Might be worth a try. You can add it to an abx protocol. The EDS machine showed Rifampin also killed ehrlichia, but Enula actually worked just as well or better.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Pinelady
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Here is a link that may know someone willing to work with you?
http://www.times-standard.com/localnews/ci_16935957 People requiring assistance in paying for the lab tests can be reimbursed up to 75 percent for the out-of-pocket costs if their application is approved, according to the press release.
The Lyme Test Access Program is a nat...ionwide program offered to provide reimbursement assistance of initial medical tests needed for Lyme-related conditions for those patients needing assistance, according to a press release.
Humboldt Lyme Awareness Group volunteer S S said since the groups kicked off the program in November, the application has been downloaded 500 times from their site, www.lymetap.org, and she has been answering questions on the application process.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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seekhelp
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Well this should be interesting. I showed my ID doc my Clongen blood smear findings. He has ordered a second 'thick and thin' smear for parasites, Babesia and Malaria from a prominent hospital in my area.
If this comes back completely negative, I'm done with specialty labs. I don't have any results at this point. If nothing shows up, my assumption will be with these specialty labs you pay out-of-pocket to you're basically paying for a result for them to find something. It sounds bad, but it would seem to be true.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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That sounds like a good idea. But I think I would have more confidence in a vet than in a hospital. Just not sure that a hospital lab -- especially in the U.S. -- would have much experience with babesia or malaria blood slides.
Have you tried contacting Eva Sapi and her students? -- that is what I had planned to do if Clongen had found anything strange on the most recent bloodslide. Or maybe Columbia Presbyterian -- the tickborne research group under Dr Fallon? Or even Galaxy Labs since they seem to have gone back into research rather than taking paying clients?
If I had something unidentified like you, I might even contact IGeneX or the F lab -- offer everyone samples of your blood for research. All they can do is say no. And maybe someone will actually be interested.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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Well as suspected, the local lab said no issues. No malaria/parasites observed. Do these specialty labs have eyes that other labs don't? Are they inclined to find abnormalities just to seem superior? Really, it seems odd. How do you all just continue to buy into this logic? Don't you ever wonder?
Bea, I heard back from Eva. She said it wouldn't do any good to look at it and she doesn't have the capabilities to ID anything and wouldn't know how to recommend treatment for it. She praised the Cowden Herbs and said they're the best treatment for the unknown. Also Enula from Nutrimedix.
Here's the kicker. She said Dr. H in NY (my LLMD) has treated successfully TWO THOUSAND patients with Cowden Herbs. Then why on Earth does this guy stand in front of the ILADS conference and proclaim a 99% relapse rate with his patients? What's 'successful' defined as? I know he's well-respected and knowledgeable, but it seems like a big disconnect exists.
I'm feeling horrendous on the Malarone right now. Super exhausted, muscles stiff as a board. All this treatment just seems to be for nothing. I chase ghosts, get 50 different opinions, and methodically get disproven at every avenue I pursue. I feel like a hypochondriac, though I feel very ill many days.
I'm considering just picking up a bottle of Enula to try. How much do they cost for a months' supply?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I am not a microbiologist, but I do think it makes a great difference in test results depending on which stains are used and the technician's experience in looking for a specific infection.
Sorry that Eva was no help. If I ever get rich one of the charities I would fund would be some sort of lab or clinic to help patients get diagnosed. There is such a tremendous need for such services. And it is so ridiculous that even when you have insurance you have to beg docs to order tests.
I know it gets hard to believe in your diagnosis when you have little emotional support and few if any definitive test results.
Hubby was just complaining about ice cold hands and feet while his upper body is pouring sweat. Obviously the malarone is doing something.
If hubby discovers the magic bullet you will be one of the first to know.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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While I never paid for a blood smear, I've seen my blood live plenty of times with dark field, Giemsa, and Wright' stain.
Let me tell you, I had tons of organisms in just about every white blood cell and bacteria in tons of red blood cells as well. They took over all my cells, and filled up just about every field under a microscope; and this comes from a pin prick.
I can tell you how I got rid of this bacteremia: Colloidal Silver.
Have you tried it? It honestly made my blood clear after about 3 months. I was shocked that it was so clear, but at the same time, not really since I herxed so bad nearly continuously. I don't think there is a pharmaceutical that could clean the blood so well. You can believe me or not, that's up to you.
It's my guess that there were so many bacteria present in my blood because of a glutathione-depletion methylation block. Which brings up my point, do you think you detox well? I'm a bit of a broken record, but fixing my methylation was very important for me (it actually helps prevent opportunistic pathogens), and your blood probably looked like mine.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Glad you think the colloidal silver helped -- but hubby did that for several months by IV back in 2005 or 2006 and he still had coccobacilli and the ring form of babesia show on bloodslides done from 2007 forward. He did herx mildly on the colloidal silver but always felt it was not strong enough to really treat his infections. My guess is that colloidal silver is probably most efffective on viruses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote:Originally posted by seibertneurolyme: kday,
Glad you think the colloidal silver helped -- but hubby did that for several months by IV back in 2005 or 2006 and he still had coccobacilli and the ring form of babesia show on bloodslides done from 2007 forward. He did herx mildly on the colloidal silver but always felt it was not strong enough to really treat his infections. My guess is that colloidal silver is probably most efffective on viruses.
Bea Seibert
It doesn't kill Babesia. Maybe it does with certain strains, or certain doses, I don't know.
But for me, it killed the majority of bacteremia as seen with a drop of blood. They wouldn't be viruses. I wouldn't be able to see them. I don't have the many thousands of dollars it takes to own a scanning electron microscope.
And I'm not talking about a couple tiny motile bacteria. I am talking a bacterial infestation � think of it as if your entire house was infested with moths.
Some would find it very disturbing, but even though it was from my own body, I found it extremely fascinating.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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MariaA
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Kday, what was your slide preparation method? I want to learn how to do this, and should have easy access to a proper microscope in my community of nerds.
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sutherngrl
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Doxycycline.......low dose.........long term.......only thing that has given me improvement.
Since you have not taken Doxy for any length of time, I would probably try that next. It gets rid of several of the co-infections.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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quote:Originally posted by MariaA: Kday, what was your slide preparation method? I want to learn how to do this, and should have easy access to a proper microscope in my community of nerds.
Well, here is a video I found. You might be able to find something better. You don't need all that special lab equipment like in that video (but do wear gloves). You just need the basics.
However, you can see more with a straight dark field microcope. You can find good enough brightfield/darkfield combination microscopes on Ebay for somewhere under $400. They are off-brand, but made in the same production line as "professional" brand-name microscopes. They are good quality. I believe some even have Nikon Lenses.
I will agree with sutherngrl that doxycycline seems to work well low dose long term. However, we may have got infected in the same state. It could have been CA, but I was flying so much at the time, I can't know for sure.
I used to not be able to tolerate doxy at all actually. I wasn't allergic it just made the die-off and anxiety too much for me to handle. I did IV before doxy actually, and then it was easier to take doxy. Now there is no negative reaction to it at all (besides when there is die-off).
I know many think they need 200 mg BID, but 100 mg BID for me.
Note: I speak from experience and I am not giving medical advice.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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MariaA
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Thank you for the link!
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seekhelp
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Bummer. I showed my blood smear results from Clongen to my ID doc. He took one look at the lab name and tossed it out and said he never heard of them and doesn't believe anything they say. He said if a local hospital doesn't see it, the interpretation is BS. I guess Clongen has a bad reputation. Back to square one AGAIN.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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/] Anyone's doctor really believe this lab? Just curious.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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