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...
Posted by littlebit27 (Member # 24477) on :
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 by Dretta17 (Member # 24883) on :
Thanks so much I really do appreciate you input Posted by Pinelady (Member # 18524) on :
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...
Posted by treepatrol (Member # 4117) on :
Start abx's then week later run antigen tests.
Posted by seekhelp (Member # 15067) on :
It sure doesn't look like Lyme to me!!
Posted by nspiker (Member # 22824) on :
You have posted only one of your tests. Do you have both the Igenex IgG and IgM results?
Band 41 is anything with a flagella, and can be lyme or other bacteria/parasite.
Posted by Dretta17 (Member # 24883) on :
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
Posted by TerryK (Member # 8552) on :
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
Posted by TF (Member # 14183) on :
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.
Posted by Dretta17 (Member # 24883) on :
I see that, looks like negative for both, the only positive as I said was the 41kda and my stricker panel being at 40....
Posted by TF (Member # 14183) on :
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?"
Posted by Dretta17 (Member # 24883) on :
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...
Posted by Pinelady (Member # 18524) on :
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.
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