what do you all think? I really need advice. Being treated with catsclaw and supplements to boost the immune system as of right now. Thanks...
Posts: 31 | From NJ | Registered: Mar 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Many people still have lyme even though they have negative tests. And from what I heard CD57 being off is a good indicator of Lyme disease.
Before I did the antibiotic challenge I only have band 41 pos. Now through Igenex I have two bands pos and two bands ind. So according to Igenex, that is positive.
Lyme doesn't show up on blood tests for many reasons. It doesn't mean you don't have Lyme.
People are going to tell you it in a clinical diagnosis, based only on symptoms. Even if you read the bottom of the Igenex test pages, it says something along those lines. Tests can be helpful in determining the course of action but are not the end all.
If nothing else fits other then Lyme and you have ruled out all else then I think it's clear you have Lyme.
I know how much I wanted my tests to show positive, and the first time they didn't and I doubted that this is what I had. Especially because I diagnosed myself, not a doctor. I said I think I have lyme now I need a doctor.
When I first saw the negatives on the first test I was disappointed to say the least, I thought that I was wrong. And while I didn't want it to be Lyme, I'd rather it be something that could be helped with abx (in my case, not dibilitating yet, caught it early into symptoms) rather then a death sentence like ALS or MS. And of course I didn't want to be wrong.
If you want proof, as I did, then test again after a month or so of treatment.
I think another big indicator is herxing, although some say a few never herx at all. I knew it was Lyme when I went on doxy for a sore throat. The second day I woke up with horrible joint pain that I had never experienced before. It was my first herx.
Good Luck to you. And if you google why do lyme tests come back negative you will find all kinds of answers. http://www.anapsid.org/lyme/lymeseroneg.html There's one. Check it out.
posted
Thanks so much I really do appreciate you input Posts: 31 | From NJ | Registered: Mar 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree. It took me 3 mths. of homemade antibiotic
and salt C to keep me out of a wheelchair and it
got me a pos. IgM.
If your LLMD thinks you have it you probably do...
-------------------- 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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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Start abx's then week later run antigen tests.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I oly have one paper with the #'s I posted, the Igenex test and the stricker panel test, where would I find the IGM and IGg stuff? Thanks - Mike
Posts: 31 | From NJ | Registered: Mar 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
No one can tell if you have lyme based on tests only. That's why you need a well trained lyme expert. Is your LLMD ILADS trained? Does he/she come highly recommended by other lyme patients?
There are many reasons for seronegative lyme disease. The Western Blot is testing for antibodies, not for the organism itself. Some of the sickest patients are negative because their immune system cannot mount an adequate response.
Borrelia lives in the tissues, not the blood. This makes it harder to find. Many people have had negative WB's only to find out later that a tissue biopsy reveals the organism or a DNA test for the organism comes back positive. This is not unusual from what I've read. http://www.canlyme.com/seronegreasons.html
Unfortuantely, many of the tick borne infections do not have reliable testing and it is not unusual to get more than one infection from the tick when it passes lyme disease.
By the time most people finally get to an LLMD, they've had practically every test under the sun. A good LLMD will do a differential diagnosis which means they will look for other likely causes that have not already been ruled out.
The diagnosis is also based on your history, symptoms etc.. An abx challange can be useful as mentioned by others. You will likely have a herx with appropriate treatment which can help clarify your diagnosis. I got the long red bart streaks in the first 6 months of treatment even though my tests were negative for bart. Many new strains of several of the co-infections are being discovered and there are no tests for them.
Unfortunately, this is the state of testing with Tick Borne Infections. That's why a good LLMD is critical.
If you have a good LLMD who has done the differential diagnosis and evaluated you clinically then trust their judgement. Get adequate treatment and see how you progress.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Mike, look at the top of the paper where it says "Test Name."
I believe it will say "Lyme IgM Western Blot."
I just got IgM from Igenex. Never the IgG.
Check and see if I am right.
After "Test Name," then it has a number of sentences including: "IgM Western Blot is considered positive if two or more of the double starred bands below are present. The IgM WB is considered equivocal (indeterminate) if only one of the double starred bands below is present."
Then, after all the sentences, there will be a line across the page and then:
LYME IgM WESTERN BLOT NEGATIVE
After that, it lists all the bands you show above.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I see that, looks like negative for both, the only positive as I said was the 41kda and my stricker panel being at 40....
Posts: 31 | From NJ | Registered: Mar 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What is the name of your test?
Is it Lyme IgM Western Blot? Is it Lyme IgG Western Blot?
That's what people are trying to find out from you.
You are reporting band results but not saying if it is IgM or IgG.
What is "negative for both?"
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Sorry my test is LYME IgM Western Blot, that's what the paper says. Test was performed by Igenex Labs.
on the bottom of the paper it says: Igenex IGM Result Negative CDC/NYS Result Negative
does this help? Thanks...
Posts: 31 | From NJ | Registered: Mar 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Dretta17 some LLMD's think some of the sickest patients will not show bands unless challenged.
I would not give up.
I have heard of some people taking 5 tries before they finally got it to show up.
-------------------- 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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