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» LymeNet Flash » Questions and Discussion » Medical Questions » Central Florida Research Lab

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Author Topic: Central Florida Research Lab
daystar1952
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Hi

Has anyone here had their blood sent to The Central Florida Research Lab and if so what were your results....if you don't mind saying. I am wondering if the flow cytometry test they are offering in lieu of the Bowen test is coming up with what seems to patients to be an accurate substitute?

Also, it appeared that the Bowen test more accurately determined babesiosis than any of the other labs I was tested at.I don't know for sure if CFRL tests for this. I believe I was told at one point but I forget.

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Skyler
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very interesting!

--------------------
I'm probably sleeping...

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daystar1952
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No one seems to be responding. Hasn't anyone here sent their blood to this lab now that the older Bowen test is not available? Or....is everyone sending their blood to Igenex?
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valymemom
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An llmd in northern VA sent my neighbor's son's blood to this lab and her son's results were the lowest possible positive.

He had a week of flu-like symptoms, brain fog and muscle pulling for about 10 days late July.

No symptoms now.

He will get his Igenex results ina few weeks.

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suz9601
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I just sent my blood there last week, so no results as of yet. i will report back when I get them
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SForsgren
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I sent mine when it was first available. The result was negative. This seems consistent with my CD57 progression as well. That said, I still think the problem with tests like this are they look for infection in blood, but that doesn't really suggest load in tissues and deeper body compartments.

--------------------
Be well,
Scott

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daystar1952
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Should we be taking biopsies then Scott? Is that the only way to tell if it is in the tissues? The Bowen test found mostly the cyst form in the blood. Is that unusual? I thought that the spirochete changed to the cyst form when hiding out in the tissues?

Margie

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seewater69
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Hi Daystar,

I had the Bowen test 3 years ago and I was not aware they were finding cyst forms, I think you mean cell wall deficient form which is L form I think, i don't think there is a test in the world that can find cysts

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bejoy
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I had a high positive from Bowen, and a negative from CFR.

The change in results may be due to different tests, or due to agressive therapy in between that temporarily cleared my blood of pathogens.

My symptoms and response to treatment are consistent with Borrelia Garinii (and co-infections.)

My impression is that Bowen showed positives for multiple Borrelia strains, (some of which may not have been lyme related).

I think that CFR only tests for three specific strains of Borrelia, all lyme significant, but they may miss many other existing lyme B strains that have not been identified yet.

The judgement of what is more accurate is up to you. If you are looking for Bb in the blood specifically, then I think CFR probably has an excellent test.

If you have alternate lyme borrelia strains, and you have cleaned out your blood, then the test may not be accurate.

These are all just my impressions and opinions.

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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daystar1952
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OK.....I had thought that the cyst form and the L form were interchangeable terms. I guess they are not from what you have said. How is the L form different from the cyst form? Is one in the shape of an L and the other a circular body?

I have a photo of my supposed lyme germ from the Bowen Lab. It is the round form...looks like a mycoplasma. So is that the cyst form or the L form? I'm confused. It has all these black dots inside of it that were thought to be pleomorphic forms that would later spew out and become spirochetes.

I had always wondered that if the Bowen Lab was also finding similar microbes to Bb, that essentially it didn't matter...as far as getting treated and getting better. I asked a Swiss Researcher about how accurate the Bowen test was for Bb and she told me that even if the Bowen test was finding similar germs ...that this was ok because if they were that similar where it would cross react (is that the term?) then it would most likely act in the same manner as Bb and require basically the same treatment.

So, maybe current "science" is conveniently being over restrictive in their classifications and diagnosis so they don't have to let on as to how broad this epidemic really is? Does that make any sense?

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Dave6002
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quote:
That said, I still think the problem with tests like this are they look for infection in blood, but that doesn't really suggest load in tissues and deeper body compartments.
Ditto.

Lyme pathogens may mainly infect neurosystem.

The test may be good for detecting other blood-born infections and extra-cellular pathogens.

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daystar1952
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All I know is that the Bowen lab diagnosed me with Lyme and finally babesiosis, I have been treated long term because of this and am doing well.

I believe they had to ask for the money as a donation because of their research lab status.

I don't necessarily think the CFRL is any better. This is what I am trying to find out. I believe the Bowen test was diluted in order to be CLIA approved. This is what I am concerned about that maybe many who are really positive are now being left out of the picture? We need some data....perhaps a survey by an independant source?

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bubbear
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Well we won't have to worry about any of this if ACHA has thier way.....I tested positive by Bowen and then CFR's test...I probably would have been dead by now...and wheeather or not you think there test is better ...or not ...at least we had options and choices as to testing...If the ACHA is allowed to make up the rules as they go along...we lose ...no matter how you look at it

--------------------
Hugz, Tugz and Health to you!
Greg/bubbear
http://centralfloridaresearch.com
Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino

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bejoy
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Bowen found my borrelia, but mine doesn't come up on other tests as a B burgdorferi.

I wish Bowen was still testing, but I think their accuracy wasn't being respected because they had so many positives.

I don't get the sense that CFR comes up with as many positives as Bowen did. But then they may have a more "accurate test" because they may be testing for lyme "in sensu stricto" rather than in the broad sense.

The issue is moot, in my opinion, of you are being treated by an LLMD or self-treating, as in my case.

A good LLMD will treat you based on symptoms alone, regardless of a positive test.

If you have an LLMD, then the only reason you need a positive test is if your insurance requires it to pay for treatment, for some reason. But they shouldn't if your LLMD thinks treatment is appropriate.

The other reason is to be able to point a finger at a piece of paper when family members or associates think you are malingering.

The point is that you may be one of the lucky ones who has a common borrelia strain and test at a time when it shows up positive in your blood.

For that, I think CFR is an excellent antigen test, and especially good when used in combination with an IGeneX antibody test.

If not, then you go by outcome based treatment. If you herx, then you found a treatment that works, and you'll get better.

It's pretty clear that most chronic fatigue, chronic pain, rheumatoid, dementia, and autism symptoms are related to a stealth bacteria of some sort.

The trick is to find a doctor who will treat the variety of offending bacteria thoroughly and respectfully, and to stick with it until you get better.

Good luck!

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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