posted
Hello, I am doing the confirmation test on band 31. My dr. spoke with the lab in Calif. and they said that they can run that confirmation test with the blood sample they still have. My question is: If one needs to make sure the lab they draw the blood at sends it in beginning or mid-week so it doesn't sit over the weekend somewhere- how is it my first sample sent is still good?
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: Next step after positive igenex ---------------------
You posted several questions in your thread above on 26 February, 2015.
See the excellent REPLIES to your questions - they explain why you do not need to "confirm" band 31.
Be sure to read the links / articles provided that further explain why you do not need any further testing for lyme.
You can save your money on this. I'd put money toward testing for co-infections instead.
The question I'd be asking is why some doctor is asking this of you - are they looking for a reason to deny treatment by questioning the test results?
Does not sound like a truly lyme literate doctor, in light of the full IgM positive test, your rash history, etc.
Good luck. -
[ 03-05-2015, 08:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A note for further posting. Many here can't read large blocks of solid text (as in your above post and in your previous threads, too).
If you can add in some "breathing room" for the eyes, more can read and reply.
Paragraphs of more than 3-4 lines can be hard. Same goes for lists or short sentences as you use - and that's fine if you prefer that style to paragraphs.
Just put in a space break after 3 or 4 lines - or with each new question / topic.
It will look different in the composition mode, though. 5-6 sentences in compose mode usually equals about 4 when posted.
So, after you see how it looks posted, you can go back into the edit mode (tiny pencil & paper icon over the post) and position your cursor, use return tab to create some white space. Hope this helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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The sample is probably fine. The reason you should send it early in the week is that it will be increase the chances of catching the spirochetes alive and well.
Since your test came back positive there are fewer concerns??
Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The answer to your question is that the blood has to be "fresh" for the lyme Western blot because if it is a few days old, the lyme antibodies (which the test is looking for) will clump and you will get a negative WB result.
Now, the lab is not running a lyme Western Blot. Instead, they are doing a totally different test. So, obviously, for this test, the clumping of lyme antibodies is not an issue.
Every person who has had the band 31 confirmatory test has always said that the lab uses the original blood sample. So, if you really want to know the technical ins and outs of why the blood does not have to be fresh for this next test, I suggest you call Igenex. They are very friendly and happy to answer patient questions.
By the way, did you ever get a copy of your Igenex test? If so, it would be good to know that this is what Igenex says about when the confirmatory band 31 test should be done:
"Note: If a patient’s Western Blot is positive by either IgM or IgG and has only bands 31kDa and 41kDa, there is a chance that it is a false positive due to presence of antibodies to viruses or other spirochetes. Therefore, confirmation of band 31kDa is recommended – Test 488- 31kDa Epitope** for IgM and Test 489 – 31kDa Epitope** for IgG. Addition of this test improves specificity to greater than 97%."
This is from their website Igenex.com
So, if your test was only positive on bands 31 and 41, then they are recommending this test.
Since you got flu-like symptoms, then a rash that expanded to about 3 inches and lasted 2-3 weeks, and since you have an IgM positive from Igenex, I think that you really should call Igenex and ask if this test is necessary. Their phone number is right on their website.
If it were me, I would hurry to get some lyme treatment. I would not consider this test necessary. The sooner you start, the easier it is to treat.
So, look at your test results and decide if you need this.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When my IgM was positive, I had many bands positive.
You posted an overall IgM positive test and I made the assumption that would be several bands.
** Did you have other positive bands? If so, which ones? On either IgM or IgG. If there were other bands, below would not apply.
Yet this says nothing about if they could use the same sample as provided before.
or of the cost.
Looking back over Igenex' site, I notice this - under left menu: "What Tests to Order"
Note: If a patient’s Western Blot is positive by either IgM or IgG and has ONLY bands 31kDa and 41kDa,
there is a chance that it is a false positive due to presence of antibodies to viruses or other spirochetes.
Therefore, confirmation of band 31kDa is recommended – Test 488- 31kDa Epitope** for IgM and Test 489 – 31kDa Epitope** for IgG.
Addition of this test improves specificity to greater than 97%. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
well shoot .. I edited and THEN saw what TF posted! She said what I said, but much more eloquently and precisely !
I agree that the test is not really necessary, esp since you had an EM rash.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Uh. I was composing while TF posted, too, and did not see her post beforehand. I take a long time to think & to write.
Sorry. Glad TF explained.
Remember, an EM rash IS / WAS a positive lyme test, too. You needed no other, really. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by TF: If it were me, I would hurry to get some lyme treatment. I would not consider this test necessary. The sooner you start, the easier it is to treat.
Ditto.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In a previous post of yours you say that you question the test results and that your rash had been "atypical"
Not all EM rashes are perfect bulls eyes or even a bulls eye at all.
Lyme Disease; Comprehensive overview covers symptoms, treatment, diagnosis and prevention of this tick-borne illness.
. . . rashes can mimic spider bite, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body. . . .
Judie posted this Feb. 2015:
Mine was a raised, round blob, not like a bullseye at all. This article may be helpful. It describes EM rashes. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just want to let you know that having a problem concentrating is a very, very common lyme symptom. It comes as a result of lyme attacking the brain.
If you look at the Burrascano Guidelines, pages 9-10, you will see all the mental functioning symptoms he lists.
My brain function got so bad that I told my gyn I believed I had Alzheimer's. She just laughed, but I was very serious. Hope things don't progress like that for you.
Your one day flu-like episode is typical for lyme.
Regarding your test results, an IND is a slightly positive result. So, you also were a little positive on band 39.
When you say there were 2 stars on band 34, I am not sure what you mean. Generally, there are stars to the left of a number of bands, meaning that these are the bands that are highly significant for lyme.
Positive bands are noted with a plus sign (+) or even 2-4 plus signs. Negative bands are noted with a minus sign (-).
Yes, the lyme controversy is very confusing, and overwhelming, for new patients. It keeps so many people from getting a proper diagnosis and treatment.
For that reason, we try to encourage those who likely have lyme to get to a good lyme doctor who can tell them for sure that they have it or they don't. Until you see an expert, you will not know what to believe.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
How do you all get your sentences longer? The
little box I type in kicks it into next line when I
get to right side of box.
When I press preview , it won't let me alter
anything. It only lets me read it.
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
First, I am SO happy you called Igenex!! That is great. Now you see how the doctors try to undiagnose people with lyme disease! It is crazy!
Lyme doctors know that: 1) lyme is NOT rare; rather, it is worse than an epidemic in this country, and 2) lyme is complex and difficult to cure.
So, you see how the 2 camps are totally at odds.
Second, just so you know, an IND stands for indeterminate. Indeterminate is not positive and not negative. It is in between positive and negative. So, the lyme doctors say that it means it is slightly positive. Something showed up on that band, but just not a large enough amount to deserve a +.
If nothing shows up on a band, the lab gives it a negative (-) result. So, an IND is really a slight positive result, just not enough for the lab to put a + next to that band.
The lab actually measures how your blood responds to each band, just like an allergy test if you have ever had one of those.
So, for an example, the lab will assign one + if your blood responds with a 1/2 inch line on a band, 2 pluses (++) if your blood makes a 1 inch line for a band, +++ for a 1 1/2 inch response, etc. (I am making up the inches. The responses are very, very small in reality--much less than 1/2 inch.)
So, if your blood makes a 1/4 inch line on a particular band, that is marked as indefinite (IND). The response was not enough for one plus sign.
Your blood responded quite a bit to band 34, so it measured ++. The highest measurement is ++++ (four plus signs).
Believe me, the state government does NOT call a doctor regarding a lyme test unless that test is positive. So, if you are correct that the state called your doctor, you know that the state is taking note of your case and treating it as a case of lyme disease.
The CDC has its own standards for when the state government must report a case of lyme to the CDC. From what you said, you were not CDC positive, so your state does not have to report your case to the CDC. But, of course, the CDC standard does not tell a person if they have lyme or not.
The CDC standard is just what the CDC uses for its reporting purposes. You can read that on the CDC website. I have heard many people say that the CDC website clearly says that their criteria are for reporting purposes only. Still, most doctors who do not know much about lyme treat the CDC standard as if it says who has lyme and who doesn't have it.
It is a shame you have to learn all of this, but if your mind is inquisitive, we don't mind explaining it to those new to this disease.
Third, regarding feeling brain dead, brain fog, loss of memory, inability to comprehend, slow thinking, etc.--YES it is all reversible if caught in time.
As I said, I thought I had Alzheimer's before I finally found a doctor who tested me for lyme. Once I got good lyme treatment, it all reversed. Praise God!
But, what you also have to know is that when I first started out with an insurance-taking so-called lyme doctor who actually gave me lousy lyme treatment, my brain problems did NOT reverse. I wasted 2 whole years taking his lyme treatment. That was 2 WASTED years. My brain did NOT improve under his treatment.
This is why I always tell everyone to get to the very best lyme doctor you can afford. Your brain depends on it.
So, do a lot of studying and researching so that you make a good choice of lyme doctors. I was cured by a doctor who followed the Burrascano Guidelines and so were at least 5 of my friends.
So, for that reason, I always recommend that people start out with a doctor who follows Burrascano, meaning that they treat according to the Burrascano Guidelines document.
Regarding why your lines of your messages are so short, I can only tell you that in "preview" no changes can be made. Preview just shows you what your post will look like. I don't know why your margins are so short. But, that isn't really a problem, so I would not focus on that right now. Focus on what is important--educating yourself about this disease!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you typing on a computer or a little phone? On a computer . . . .
I just advanced 2 hits of the spacer bar. To judge, as I get to the end of the line, it automatically moves on to a new line. Compose / edit mode at line 3.5 now.
Just type out four to five lines or so in the compose mode -- if that's about what you want to say for a sentence. This is now just about 4 full lines in compose mode - will post less, likely.
But how it posts also depends on how wide you have your screen set up. (just about 2.5 lines in edit/compose mode)
When you need to make a new point, start a different topic or feel it's too long, go ahead now
and hit the spacer bar and I've just jumped ahead.
Hope this helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed . . ."Now you see how the doctors try to undiagnose people with lyme disease!"
and why you do NOT need any more lyme test or any re-do. And why you cannot trust that doctor. Not on your side at all.
Glad you called and understood what they were telling you that I suspected was happening, as it's happened so many times before for so many.
Glad TF could really help explain a lot, too.
You should be assessed for other tick-borne infections but no more lyme test needed. Glad that is becoming clearer.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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