posted
I know the Lyme tests are very unreliable but how about the co-infection tests?
I recently finished my initial 3 week Doxy cycle and have just been getting increasingly worse since.
I was in the ER over the weekend for bad chest pains and shortness of breath. They tested me for the co-infections there.
I was initially thrilled about this because my PCP said I would need to go to a specialist, so I was waiting on the LLMD appointment
I just called to see if the results were in and the ehrlichiosis came back negative and they are still waiting on the other results. They also told me that they did not send through another Lyme test since I had already had treatment. I was pretty pissed about this, but I guess its to be expected from mainstream medicine.
I am wondering how reliable the co-infection tests are. based on some research I think I have Bartonella or Babesisa. I have horrible pains in the bottoms of my feet, really bad joint and muscle pain, and in general I just feel awful.
Also do the LLMDs have different tests that they use or are the tests that I had done in the ER the same that the LLMD will do?
I fear that all of these tests are going to come back negative leaving me with no treatment and continuing to get worse until my visit to the LLMD
Posts: 66 | From New York | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If they told you during an ER visit this past weekend (just yesterday / day before)
that they did a test for any tick-borne infection and
today, Monday, (day after said weekend and a Federal holiday, none-the-less), that the test results came back for any such test . . .
you can be they did NOT do the test, at least not a proper test.
There is absolutely no ER (nor any regular doctor's office) that I would ever - ever - trust to do a tick-borne infection test. See next link for explanation.
Yes, you will need to have the tests run by a lab that specializes in such, with guidance from a LLMD who really knows which coinfections -- which particular STRAINS -- are best to test in your case.
Do you have an appointment date for a LLMD? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Two Standards of Care Revisited: Should Lyme Patients Have A Choice?
IDSA / ILADS - differences and why they really matter
By Lorraine Johnson, JD, MBA - 7th January 2015 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The coinfection tests are not reliable, just like the lyme tests.
See what Burrascano says about babesiosis testing on page 23 "Diagnostic Testing."
On p. 24 he makes similar statements about bartonella testing.
So, good lyme doctors order a few different babs tests and a few different bart tests--all to try to get you some more reliable results.
If ANY of the coinfection tests are positive, you can trust that positive. But, you can't trust a negative. As Burrascano says, we can't test for every strain of these diseases, so that leads to a negative test result if you have a strain that the test cannot test for.
"Because Bb serologies often give inconsistent results, test at well-known reference laboratories." (p. 7)
A hospital lab is not a reference lab, which is what Burrascano recommends. LabCorp and Quest aren't either. But, a good lyme doctor will test you using a well-known reference lab.
Every lyme patient worries about getting all negative tests. A good lyme doctor makes the diagnosis the way Burrascano describes, with tests being just one of the factors considered in making the diagnosis. See p. 7. A good doc will give you a trial of lyme treatment (antibiotics) to see how you react. That reaction helps confirm the tentative diagnosis.
So, don't worry about the hospital tests.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Lymetoo, thats a good idea, I'm sure my PCP probably would sign off on Igenex blood work. Do they do the confection testing also?
Do I just ask her to send it to Igenex?
I do also have a pretty good chiropractor. I didn't know that they could order blood work though.
I will look into this. Thanks for the advice!
My LLMD appointment is Nov 16th
Posts: 66 | From New York | Registered: Sep 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I had a babesia duncani come back positive from a standard lab. I *think* it was from Labcorp. So you never know.
If they come back negative, the LLMD can also dx you based on clinical manifestations; you don't necessarily need Igenix results for an LLMD to treat. The pain on the bottom of the feet is pretty classic for bart.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Yes, IGeneX tests for co-infections as well.
If I remember correctly, you have to get the kit from IGeneX, get your blood drawn, then mail it to them (make sure they do not get blood samples to be held over the weekend.
Call IGeneX to find out the particulars at (800) 832-3200.
Posts: 9020 | From Illinois | Registered: May 2006
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posted
Yes, Igenex will send the kit to your house and you can take it to your doctor for them to sign off on. However, I personally would wait. You've got only a few more weeks and you want the test done correctly. (I thought you had to wait several months.)
Be sure to have the bloodwork done early in the week so the blood does not sit around in the post office over the weekend.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You will pay about $200 for lyme testing through Igenex and over $600 for complete coinfection testing. So, over 800 if you do both.
You pay that money up front when you send off your blood to Igenex.
The only exception is if you are on Medicare. Then, Igenex will accept Medicare payment. You pay nothing.
So, since the Igenex testing is so expensive, if you can get a regular lab to give you some positives on coinfections, it can save you some money. Every positive you get is one less coinfection you have to test/pay for through Igenex.
Because of the money involved, I agree that folks should NOT try to get Igenex testing on their own unless they are very, very careful every step of the way. The lyme doctor's staff do Igenex testing routinely, so they will do it correctly.
But, as soon as you step out of the lyme doctor's office, you will encounter many problems to be overcome so that you can do your own Igenex testing. I say, leave it to the professionals! Don't waste your money by trying to do it on your own.
First, the lyme doctor knows what Igenex tests you need based on the test results you bring him. You will be guessing as to which tests to order.
Second, it can be very difficult to find someone to draw the blood for you. Labcorp and Quest will not draw blood to be sent to another company.
Third, the blood has to be prepared properly, according to the Igenex instructions. For example, for some tests, the blood has to be spun first.
Fourth, the blood must be sent over night delivery immediately after it is drawn. Regular doctors' offices and places that draw blood don't do that. You would have to do it yourself.
You would have to look into the entire process to be sure that you are not delivering your blood to a place that is just going to put it in a warehouse for 48 hours or so.
The longer the blood sits, the more the chance that the test will be inaccurate. The blood "clumps" and the antibodies that the test looks for gets trapped in these clumps. Then, they cannot show up on the test.
And, finally, the test results will NOT be sent to you. Igenex will send them to the doctor who signed the order for the tests. So, you will still have to go through the process of getting the doctor to give you the test results. Sometimes that can be quite a hassle.
So, for that kind of money, leave it to your lyme doctor to do it properly. Nov. 16 is a Monday--the best day of the week to have a blood draw to be sent to California. Good for you!
Here is Dr. C. a lyme doctor, explaining how to ship the blood to Igenex:
"You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.
Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.
The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.
This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens."
posted
I had Ignenex test for c-oinfections over 2.5 years ago when I had the lyme test and the co-infections for babesia, bart and erlichia were not positive
and yet I am symptomatic. My dr suspects babesia especially since my rbc's, hematocrit and hemoglobin are low as well as my symptoms. My
lymphocytes are always low. I had a low cd57 when I tested at that time with 28.
Not that I have had much improvement(thankful for the improvements that I have had) but just wanted to say that mine all said neg. I think I may have
had this for a very long time. I keep thinking a virus is keeping this symphony going. Methylation problems are not helping either.
I don't have the best of lyme dr help since there are only a handful in this state and not enough to go around. Just don't get to see him enough.
Who can go for months and months and not see a llmd? We need more people who know what to look for and not have it be a dirty word.
That is amazing that your ER would actually test for co-infections. I don't think I would count on any around here or maybe even in this state to do that.
I hope they can at least give you more doxy if you found that to be helpful.I know they will gladly give as much as you need for your pet. Doesn't make any sense.
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