Topic: Babesiosis Poll: Tested 2-4 wks post-bite? During Sx Flare? Time Frame & Pos or Neg?
AliG
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posted
I understand that Babesiosis needs to be tested for at 2-4 weeks after bite. They recommend Lyme testing at 6-8 weeks?(I believe).
I think many doctors,(if they test for co-infections at all) give you one script and tell you to go at 6-8 weeks.
I know that Babesiosis really needs to be tested for during a flare of symptoms to be detected. This is when the IGG/IGM would be elevated.
I also know that, with Quest labs, the thick/thin smears need to be done on samples drawn every 6 hours for 36 hours to really rule it out. One sample is purely a waste of time.
The only way I could see the smears being useful would be via hospitalization, how else could you get your blood drawn that often?
I'm wondering if those who tested positive were tested during the 2-4 weeks or during a flare. I'm also wondering if those with symptoms that could be attributed to Babesia were not tested during those periods.
[ 31. July 2007, 09:58 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymednva
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I can't help you with early testing advice. I was tested after I was tested for Lyme and started on treatment.
I have been ill since childhood, though, and I'm old enough to be a grandmother, my kids just haven't obliged me yet!
I have tested positive for Babs, my only positive test to date!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I tested negative for babs after being treated
for three months of doxy. I am on babs treatment right now and herxed really bad from it, so I
have no question I have it. I do wonder if now
my test would be positive because I am treating
it. I won't waste my money on the test, but it would be intresting if it did turn pos. now.
Posts: 323 | From Michigan | Registered: Sep 2006
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AliG
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Lymednva & Lucy, Would you say your Babs symptoms were flaring at the time you finally got tested?
Marcie, At 3 months into treatment, when you tested negative, would you say your Babs symptoms were down & it was more Lyme? (Lessened nausea?loss of appetite?headaches?) Or were your symptoms the same throughout?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
AliG- When I got sick last summer I had typical babs symptoms. Shakes, severe nausea, dark urine,
air hunger, bad headaches,and lots of neuro symptoms. When I first started abx I perked up
right away, but some symptoms would not go away. I was tested for babs in Nov. of last
year, but did not start treatment until March of this year. When I started babs treatment all
the symptoms came back. I had bad tachycardia, panic attacks, paranoid, severe depression, I could go on but I'm sure you heard it all
before. I am still on 1 malarone a day and zithro. My LLMD just started me on bactrim, but had to back off bec. of bad herxes again. I
would say before babs treatment I was stable but still had symptoms. Now that I'm treating I have been so up and down. It is hard for me to
say what symptoms go with what. I'm guessing the babs is giving me more problems right now
then the lyme. Hope this answers your question.
Posts: 323 | From Michigan | Registered: Sep 2006
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AliG
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The way it sounds, I don't think you were flaring at the time you were tested, if it was just some remaining symtoms that wouldn't resolve.
I'm guessing that was why the test was negative at the time.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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trueblue
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posted
Hi Ali
I'm sure this doesn't help but...
I was tested for Babs and Ehrichia when they first started testing for coinfections. It may have been '94 ish. Those were the only 2 coinfections known at the time. The tests were negative.
I was tested periodically after that.
In 1998, I had moved out of state gone to a new doc who put me on mega doses of ABX. (They were just coming into vogue then.) After 2 months I was sicker than I'd ever been. I couldn't continue the treatment and stopped. A month later I went back to the doc still so sick and a full battery of tests were re-run. I got a weakly positive IgG WB on B. macroti.
It's never shown up positive again and I just started treatment for it this past year. I'd be really curious to see if I tested now after going after it some if it would come back +.
It did work that way with Lyme for me. 1 Lyme specific band at diagnosis and CDC positive, like, 2 years into treatment.
I didn't know what the sx of Babs were when I got the positive test.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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luvs2ride
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On 5/12, I pulled a dog tick from my scalp.
Within 24 hrs I was sick. I got my regular physician to prescribe 2 weeks doxy as precaution and immediately made an appt with an ILADS LLMD. I saw her on 6/4 and she ran a gazillion tests.
I came back positive for Babs WA-1, EBV (dr said I was in an acute flare of mono), QFever, H. Pylori and tapeworms. A couple of positive bands for lyme.
So far, I can't tell that I have had any of the Babs symptoms you guys describe. I am having some mild sweats but then it is Aug in Virginia and hot and humid.
The doctor and I think the babs probably came from this tickbite. Lyme did not as we had the tick tested for lyme and it was negative.
My adrenals were shot. Dr said we have to get the adrenals up first because they fight inflamation. I spent a month on supplements for the adrenals. She also started me on Plaquenil for my Rheum. Arthritis.
Now I have begun ammoxicillan and biaxin (1/2 strength) to kill the H. Pylori. If I tolerate this ok, then we increase the biaxin to Babs level.
So far, she hasn't mentioned using the drugs I normally read for Babs. My joints are flaring a little from the medication but I am taking 2 aspirin morning and 2 evening and this is keeping me out of pain.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Vermont_Lymie
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I was tested for babs microti years after the evident exposure.
My antibody tests all came back sky-high positive. And I have certainly had all the symptoms and responded to babs treatment. But my PCR blood test came back negative.
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Michelle M
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I was tested for babesia WA-1 after being in treatment for lyme for a year. I tested positive. I never did test for b. microti since I figured the treatment would be the same.
As far as whether symptoms were in a flare -- mine were almost purely headache/neuro stuff, which was pretty much constant.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
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Hi True!
quote:Originally posted by trueblue: After 2 months I was sicker than I'd ever been. I couldn't continue the treatment and stopped. A month later I went back to the doc still so sick and a full battery of tests were re-run. I got a weakly positive IgG WB on B. macroti.
If you were "sicker than you'd ever been" I think it would be a good guess that Babs was flaring, hence the positive test.
I believe the key to the positive test is testing DURING a flare.
This is the test result pattern I've noticed during my flares & Tx.
It seems to take a month or so for the levels to drop back down after the flare subsides.
If you get tested within a couple of weeks after the Babs Sx drop off, I'm guessing you might still get a weakly positive test.
It seems with Babs, the worse the symptoms at the time of the test (Babesiosis IGG/IGM), the higher the titer.
I believe the key to the test is the timing.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Good for you Luvs! You got tested for it in the initial time-frame! It was great that you got to an LLMD so quickly.
I think TuTu has a pretty comprehensive list of symptoms. I hadn't really listed many of them.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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quote:Originally posted by Vermont_Lymie:
My antibody tests all came back sky-high positive. And I have certainly had all the symptoms and responded to babs treatment. But my PCR blood test came back negative.
Were the tests done at the same time? Were you in a symptom flare at the time of the PCR?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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quote:Originally posted by Michelle M:
As far as whether symptoms were in a flare -- mine were almost purely headache/neuro stuff, which was pretty much constant.
Did the headache/neuro stuff subside with Babs Tx?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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5dana8
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tested positive threw quest labs. Tested before my intensive treatment staryted but I had been on doxy for many years prior to testing.
Just had one blood draw ~not the 6 hours draw. I didn't have some of the more classic symptoms like night sweats or air hunger.
I did sweat sometimes when I woke up from some naps & did have periods of shortness of breath. But nothing really classic.
Ended up having to do 2 treatents at 2 different times in 3 years. The second was the charm in that it did get rif of my constant low grade fevers. I always thought my fevers where a lyme symptom, but for me it was a babs symptom.
I don't put much stock in testing for lyme or any of the co-infections. The tests & the labs are just not set up or sensitive enough to pick up alot of cases.
take care Dana
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AliG
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quote:Originally posted by 5dana8:
I did sweat sometimes when I woke up from some naps & did have periods of shortness of breath. But nothing really classic.
Ended up having to do 2 treatents at 2 different times in 3 years. The second was the charm in that it did get rif of my constant low grade fevers. I always thought my fevers where a lyme symptom, but for me it was a babs symptom.
So the fevers were Babs-related. Were the fevers, shortness of breath & sweats occuring when you were tested or right before?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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5dana8
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Hi Alig
yes, all ocurring durning prior & durning the test. For me the constant low grade fevers where babs related because after having them for 20 years & 12 years into treatment it was the last babs treatment that finally got rid of them.
I had always been a little shortness of breath when I got lyme 20 years ago, and don't know if this is because I was always so fatigued or not.
I never got the horrible night sweats alot of people describe. Only on occation I would wake up from a nap sweating . Not drenched in sweat at night when you wake up.
For me it was the low grade fevers that diappeared after my last babs treatment.
Hope this helps
Dana
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AliG
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Thanks Dana,
You were having symptoms attributable to Babs, that's why the positive test.
Some think the Babs symptoms are always raging & severe. Some get them worse than others. I think if you pay attention to them in yourself you can see times when they are worse than others.
I don't know if that depends on your constitution or immune system or what?
Thanks again Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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tabbytamer
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Had a couple babs microti FISH that came back negative (Igenex)
Then had a positive Babs WA-1. Yes, I waited until my "bad" week to do my tests this time.
Also had been off all abx for a several months before the test.
Wonder if either of those had something to do with the positive result(?)
AliG
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posted
quote:Originally posted by tabbytamer: Had a couple babs microti FISH
Tabby had FISH!
Were your Babs symptoms flaring when the FISH were done or was it in the 2-4 wk after-bite timeframe?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Michelle M
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quote:Originally posted by AliG: Did the headache/neuro stuff subside with Babs Tx?
At first it got SO much worse that I thought my head would explode.
Within a couple weeks it got MUCH better. I couldn't believe it. I was practically doing handstands of joy!!
Regrettably, after a couple months it was back.
Retreated. Same scenario, different day. Ha ha.
My LLMD does not know presently whether I still have it, or whether the headaches/brain fog are just collateral damage. We may retest.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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***I'm also wondering if those with symptoms that could be attributed to Babesia were not tested during those periods.***
Well, let's see. My babs test came back "borderline"....but I herxed to Mars and back on the meds.
That was about 42 yrs after contracting it. I think I missed the window!
Is this the list you wanted??
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96205 | From Texas | Registered: Feb 2001
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I had the blood draw during my first LLMD visit. I had not started any treatment yet. I was sick as a dog and couldn't tell you which symptoms were from Lyme and which were from Babs.
At that point I was sick all the time so it is hard to know if I was in a flare.
I tested negative after 7 months of Mepron along with Ketek for Lyme.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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AliG
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Thanks TuTu
That'd be the list I was talking about.
You were borderline & I'm guessing symptomatic for Babs?
Lucy,
I'm a little confused. The first LLMD visit blood draw was positive or negative?
I'm figuring the "after 7 months of Mepron" was a second test?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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