lymewreck36
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Member # 4395
posted
Has anyone else had the experience that your babesia IgM remains above normal, positive, for the duration of your infection.
I've had babesia for 15 years, and yes, done everything for it, but that is not the discussion I'm looking for here.
I recently went to Duke with my collection of positive babesia titers, from Danbury Hospital, other labs in Connecticut, North Carolina, Mississippi, and even separate labs in Europe, from Germany and Switzerland.
I was dismissed as NOT having babesia and possibly never having it even after two hours of giving him the clinical picture, because my titers all have a positive IgM.
Then I looked at the CDC "case definition" of babesia, and low and behold, it says that an IgM that does not turn IgG positive is a false positive! ( I had one IgG positive over the years)
Never mind that I got this "false positive" for 15 years across states and nations, and I'm super ill and suffering. And my clinical picture fits with babesia, which, by the way, the Duke "professional" said was probably my need for psychiatric work-up!
So, I'm looking out there to see what you guys know and/or have experienced about this.
I should also say that the Duke physician wasn't even going to do any testing of his own. Nothing. Then he said he would run a PCR after we pressured him. He said it's the new PCR that is super sensitive the three kinds of babesia, and indeed, the medical literature on this new kind of PCR says it catches even the slightest level of infection.
I wondered how that would turn out since I've never been PCR positive. And I am on babesia medications whilst he runs this test.
And of course, the test came back negative, and he wrote in my medical record that he's now sure I ever had babesia and don't now have it for sure.
Thanks for all input in advance.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With any tick borne infection, I'm not at all sure there can ever be any test that is for certain one to say it's gone or never was.
How are your red blood cells looking these days? Are they tip top? No anemia? If so, that's a good sign, of course but not a guarantee that Babesia has never been or, if it has, won't still be sort of hanging around.
Still, a person may have zero symptoms and still carry / have babesia (see American Red Cross full article in post below).
What do ILADS educated LLMDs know / say about this new test that was used? That would be key. What do they say about babesia's longevity in general? The various ILADS' physician's writings / lectures mean a great deal.
** I would not care what this particular doctor says if he's not all that well educated on the matter. **
Even if he says it's the best, newest test . . . there are so many variables with the WAY a test preparations / the labs used & how good they really are / anti-babesia Rx with the test sample are all variables that could interfere with results.
That you were on anti-babesia Rx is the biggest question of all, too, regarding possible skewed results.
I know you are wishing for a clear answer and you may not have the funds for a doctor who is well educated in this infection (and its potentially chronic state or if you might be "cured" any residual issues) but I'd not put any stock in this doctor.
Pretty sure you know, though, to never donate blood or any body tissues / organs, ever. Be sure your family also know this and why it's so important.
If even the American Red Cross sees the importance of this, it seems that it may indicate the potential to its chronic state (or maybe a dormant state) for the lifetime of the patient.
Sadly, I know we cannot avoid typical doctors (even if they are in a specialty) forever for we do need their advice now and then.
But this really points to the huge risk to those who have / had had any tick-borne infections since many can be chronic &/or turn dormant for periods of time and
usually each one can affect the body in so many ways that it is imperative that any doctor treating us knows all this in order to get proper care for whatever else might be an issue.
Sigh. -
[ 10-10-2017, 08:42 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- I'm not sure if Bea Siebert is still posting at all here but she is the most well educated of individuals I know regarding Babesia due to the turmoil of her late husband's encounters.
In the directory, though, I can find no members with either the spelling of "Bea Siebert" or "Bea Seibert"
Anyone else know how to find her? -
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Keebler
Honored Contributor (25K+ posts)
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posted
- If I read this correctly, as of two months ago, this test was still in testing phase . . . but just curious as to how it would compare with the test you had done.
Select American Red Cross Blood Donations Screened for Babesia Parasite Using Grifols' Procleix Babesia Assay Under an Investigational New Drug Protocol
BARCELONA, Spain - Aug. 1, 2017
. . . Grifols Procleix Babesia assay . . . .
. . . The Procleix Babesia assay is designed to be a qualitative
in vitro nucleic acid screening test
for the direct detection of the Babesia parasite in whole blood specimens from human blood donors on the fully automated Procleix Panther system platform. . . .
. . . "The Red Cross is excited to participate in this timely critical trial.
The availability of a sensitive and specific nucleic acid test to decrease the incidence of transfusion-transmitted Babesia throughout the endemic areas of the U.S.
will be an important accomplishment," said Dr. Susan Stramer, Ph.D., Vice President, Scientific Affairs at the Red Cross. . . . -
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thanks everyone. I know I still have raging babesia. I cannot drop my anti-malarials without instantly breaking out in sweats, headaches and neurological hell, as well as body pain as if I'm being put through a meat grinder. Add back in the anti-malarials, I start pulling out.
And I have blood abnormalities consistent with babesia - elevated d-dimer, RDW out of whack all the time, for years (blood cell size conformity measure), and I'm anemic.
The clinical piture and 17 years of positive tests - lots of IgM, and some IgGs too- and doc says I don't have babesia and maybe never did.
I've seen through the years, Dr. P in Connecticut, Dr. K in CT, Dr. H in NY, Dr. J who at the time was in NC and now is in D.C., and several other llmd's.
Even when I lived in Europe for 7 years, we flew the family back to the U.S. regularly for llmd appointments. They all agree I have babesia.
But I'm looking for someone else like myself with the ongoing IgM. I couldn't be the only one, right?
[ 10-11-2017, 10:38 AM: Message edited by: sixgoofykids ]
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
I actually never tested positive for babesia at all, yet same as you, couldn't stop antimalarials without symptoms coming back.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I have NEVER been, in all the acute and chronic years, been PCR positive. Many people with babesia never test positive. true of one of my daughters as well.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
IV ascorbic acid does wonders for babesia, see if a clinic in your area offers it
Posts: 90 | From Wisconsin | Registered: Mar 2016
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quote: And my clinical picture fits with babesia, which, by the way, the Duke "professional" said was probably my need for psychiatric work-up!
[/QB]
these people are the worst, honestly. not only do they not help but they accuse you of being crazy. Fckng sociopaths.
Posts: 90 | From Wisconsin | Registered: Mar 2016
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posted
The labs are the key. My blood is shipped to National Jewish Hospital in Denver.It is supposed to be top place for infectious disease. LLMD also uses Igenex and Bio reference labs.And yes, my Babesia numbers are improving with treatment. So are my husband's. Well known neurologist tested me. I have beginning of Parkinson's, he said. He studied Babesia tests and said the were probably"too sensitive".That was two years ago. I was highly amused to find him a speaker at a Lyme Convention last month. Maybe I helped to open his eyes a little.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Hey Keebler I think it's "seibertneurolyme." Looks like she hasn't posted here in 2+ years.
Posts: 474 | From US | Registered: May 2014
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posted
Another point: my husband was"cured" with Mepron/Zith regimen. Now his fevers, sweats are back and he's back on Mepron. His test results definitely show the return of Babesia. In my case, after a year on Mepron, I'm better but not yet over it completely so now I'm on Alinia. I do have anemia and blood pressure issues, but very few sweats or fevers.
People vary. Tests are just a guide for a good LLMD. There are no false positives, but many false negatives. It takes a good LLMD to sort it out.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Babs is hell.
I got twice, from 2 different bites in the past.
First bite, was okay. Just normal treatments, and it went dormant...
Second bite, it was hell.
I kept using so many things against it, it kept coming back.
I could though stop its progression after so many energy tests, and different Chinese herbs on top of conventional babs herbs, artemisinin, etc...
but I kept wondering, how the heck people get rid of THIS??
I could not figure out how people get rid of babs. It's way too smart and strong, a sort of master of hiding.
I particularly think my 2nd babs infection would never be solved if I did not use DAILY energy tests, tuning my herbs and cleansing stuff + binders.
babs was the most intelligent and hard lyme infection I got, I have no doubt.
It's a master of changing forms, changing symptoms and hiding in body niches.
Energy tests can find niches, in my opinion, and then you need attacking those niches with several methods (to take it off its hiding places).
I used acupuncture, or hands on massage. Today, I would use infrared or ultra sound (if I had an ultrasound device).
Or even Rife frequencies, I suppose, may do the job. Or pulsed magnetic frequencies (PEMFs).
but just by trial and error, I don't believe you'll manage in a lifetime.
A lifetime is too short for trial and error, as the body has too many niches that serve as hiding places (my opinion).
Even teeth roots can be one, jaw, sinuses, parts of brain...
I guess it depends on babs strains too.
I'm really sorry to hear about you guys still fighting babs for so long.
My only advice is: seek energy testing methods.
when I was close to remission (final remission), I went to my lyme doctor, and he could not find any active lyme infection (he tested all stuff he could, I mean, energetically).
I had barely any symptoms, so symptom list could not help.
Then I suggested him: 'What if it's hiding?'
He smiled and then started searching, all over my body, pathogen by pathogen. And he DID find a couple (I can't remember which, exactly).
He re-tested a few times, I re-tested alone too, yep, they were in my back brain and in other places. Like waiting for attack again.
Once I aimed those places (that are BLOCKED due to neuro blockades - look at the post on magnetic treatments and you'll understand how many parts of the body get blocked neurologically) + took right medicine / herbs / homeopathy, well, I herxed again...
it's like you finally open those niches and pathogens can't hide any longer.
if you read what dr. K said in the lyme summit of this year (couple of months ago) about his PCR testing to find infections after using ultrasound to put pathogens out and then taking urine samples to find the PCR genes, ...
... well you'll see that he knows WHERE to excite the body of the patient BEFORE the PCR, due to energy testing!!!
Once he knows where they are, he would use hyaluronic acid + ultra sound to lure pathogens out, and then some DNA will leak to the urine and he can prove they were there the whole time.
The funny thing was that he knew they were there before the PCR test is done.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
Frequent Contributor (5K+ posts)
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posted
lymewreck36, I am also in the Duke system and so frustrated. I am seeing them for my eye problems. I have a positive IgM for babesia microti and a positive IgG for duncani and a positive PCR for lyme from Igenex.
No doctor within the system accepts them. I was told that chronic lyme does not exist, bartonella was from cats and babesia is very rare. A primary care doctor suggested a psych evaluation.
I just cry with frustration.
Posts: 68 | From Kentucky | Registered: Jul 2010
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Brussels
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posted
Even if you all get a positive, what kind of treatment do you expect from MDs without any experience with chronic babesiosis?
I don't think a positive testing will bring much, short term.
Only after years of having hundreds, thousands of people testing positive for babs DESPITE treatment, some new strategy MAY appear, who knows?
A positive exam is good (so that you prove to people you actually are not imagining things), but I wouldn't put a lot of hopes on that as a healing strategy...
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Keebler
Honored Contributor (25K+ posts)
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ADVANCED TOPICS IN LYME DISEASE DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES
Sixteenth Edition - October, 2008
Joseph J. Burrascano, Jr., M.D.
pages 22 - 24 BABESIA
Page 27 - SUPPORTIVE THERAPY & CERTAIN ABSOLUTE RULES for self-care
page 23 excerpt:
. . . Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time, including up to several years after the initial infection!
Furthermore, such Babesia carriers pose a risk to the blood supply as this infection has been reported to be passed on by blood transfusion. . . .
-----------
the last excerpt also points to why anyone with a history of babesia should never donate blood any body organs / tissue at any time of their life, or afterward. This is very important. -
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Keebler
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. . . [comparison of CDC guidelines for babesia treatment with others] . . . -
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Brussels
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Member # 13480
posted
r. Rawls, from Keebler's link above
- Babesia can easily alter its physical form and function to adapt to disruptions in its environment such as antibiotics.
- The spleen is a vital organ for overcoming babesia. Recovery is primarily dependent on the spleen’s production of IFN-gamma and production of NO.
Th1 cytokines enhance formation of the amino acid, l-arginine, which is necessary for production of nitric oxide (NO).
Nitric oxide is very toxic to microbes and is necessary for killing babesia organisms.
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hi folks,
especially Stumpy who also has tried the Duke system. I fell off the planet for many, many months. During that time, I was diagnosed by a Duke immunologist (special lady) with Mast Cell Activation Syndrome. Now I understand why I have difficulty with mediation, and I'm on a ton of them because I could not tolerate the really targeted ones for babesia.
Now I'm also on. 3 different antihistamines in addition to the other meds. Still no better with babesia.
Now I find from recent blood work that my total IgG is below the cut off for normal. Again!
No answer to why I only have IgMs positive, 16 years of positive tests from states and countries.
What happens when I go on Medicare one day? Will I be able to get my medications, all of them?
Will my liver survive the meds?
So Stumpy, are you going to the support group meetings in Raleigh? I would see you there!
Mary
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