I just got my Igenix kit in the mail... It is difficult to part with $200.00 to have these tested, I have to tell you. When you are as broke as I am, it is hard to have to spend it, or worse, borrow it from someone to spend. But I know the peace of mind is worth it. Anyway, how accurate IS the western blot test? I have read for many hours about it..I know it is supposed to be the most accurate, but what about for someone who may have been infected 10, 15, or 20 years ago??? Will it be able to detect it? Personal experience stories desired... Blessings...
Posted by Keebler (Member # 12673) on :
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iloveyou,
I'm breaking this up so more can read and reply:
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I just got my Igenix kit in the mail...
It is difficult to part with $200.00 to have these tested, I have to tell you. When you are as broke as I am, it is hard to have to spend it, or worse, borrow it from someone to spend. But I know the peace of mind is worth it.
Anyway, how accurate IS the western blot test?
I have read for many hours about it..I know it is supposed to be the most accurate, but what about for someone who may have been infected 10, 15, or 20 years ago???
Will it be able to detect it?
Personal experience stories desired...
Blessings...
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Posted by Keebler (Member # 12673) on :
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If it's between a test and a doctor's visit, I think you would be best served to see an ILADS-educated LLMD for a personal evaluation / assessment.
If lyme is a problem for you now, the WB can pick that up, regardless of how long ago you were infected but it might not. However, with the WB is better than most tests, it is not a guarantee as the sensitivity of any test is just not perfect since lyme is so very hard to test.
An antibiotic challenge before the test might help with the accuracy. And, be sure to do the test and have the sample handled EXACTLY by instructions.
Still, if you are expecting a 100% solid yes or no, you have to know that lyme tests can read false even in a person who is very ill with lyme.
I can't think as to how to explain this so I'll let it go for others to do that.
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Did you ever have a bulls eyes rash (or other rash) after a tick bite?
Do you have an ILADS LLMD near you? There are other tick-borne infections, too, and if you see a LLMD first, they could better guide you as to if this might be lyme, babesia or other TBD.
And, there are also other chronic stealth infections to consider. Not everything is lyme and some other infections can present in a similar fashion. A good LLMD should know how to figure this out but much relies on your physical presentation and history.
Lyme is a clinical diagnosis. Tests are not accurate enough to rely on solely; the experience of an expert is invaluable.
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Posted by Keebler (Member # 12673) on :
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VERY important to read - even BEFORE testing:
Dr C's Western Blot explanation is discussed here:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
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Posted by Erica741 (Member # 15186) on :
Ditto on all Keebler's advice!
Especially the antibiotic challenge. Since you are concerned about the very-sensitive Igenex western blots detecting your possible Lyme, you likely know that the western blots detect Lyme-specific antibodies (not the actual lyme bacteria itself).
You have probably also read that patients who have been sick for a long time often have less activity on their western blots, which makes sense because we know that Lyme develops clever ways to entrench itself in the body and hide from the immune system...and then the immune system would stop making antibodies to an infection it doesn't detect.
Doing an antibiotic challenge, eg. several weeks of doxycycline, prior to getting the test done may be the best way to increase the accuracy of your results.
Have you taken antibiotics recently? If so and depending on what you took, you may have stirred up enough Lyme to create more antibodies.
I suggest you call Igenex and discuss your questions and doing a possible antibiotic challenge test with the lab's director, Dr. Nick Harris. He is very open and responsive to answering patient questions.
If you are advised not to do an antibiotic challenge or if you can't get a doctor to prescribe the antiobiotic, their are many natural antibiotics and immune stimulants you can take for a few weeks before getting your blood drawn. The others on here will be a better resource for that info.
Good luck to you!
Posted by Need Lots of Help (Member # 18603) on :
I have had lyme for 20 years. My WB through Igenex picked up the antiboities and I was even CDC positive.
Shalome
Posted by iloveyou (Member # 20244) on :
Thanks for writing everyone. I did read that post above, of course. Twice. I have to say, I cannot imagine taking antibiotics like these doctors tell you to. Really. If anything, I believe that mass amounts of antibiotics have wiped out my immune system over the years and it took many years to repair back again, and is still quite sensitive. I cannot imagine how wiped out your systems must be after a year or more of antibitoics. Although it may be best, I would never take antibiotics just so I could take a test, even if it could produce better results! I think you are all very brave for doing so! It is helpful to hear that someone who may have gotten it a long time ago tested positive. Thanks so much.
Posted by Keebler (Member # 12673) on :
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sorry, I just can read the post above unless it's spaced out . . . reposting:
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Thanks for writing everyone. I did read that post above, of course. Twice.
I have to say, I cannot imagine taking antibiotics like these doctors tell you to. Really.
If anything, I believe that mass amounts of antibiotics have wiped out my immune system over the years and it took many years to repair back again, and is still quite sensitive. I cannot imagine how wiped out your systems must be after a year or more of antibitoics.
Although it may be best, I would never take antibiotics just so I could take a test, even if it could produce better results!
I think you are all very brave for doing so!
It is helpful to hear that someone who may have gotten it a long time ago tested positive.
Thanks so much.
(iloveyou)
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Posted by Keebler (Member # 12673) on :
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A challenge for the test is not a high dose. You can take protective measures such as probiotics, milk thistle, olive leaf extract (to prevent candida), etc.
You have a much better chance at a good test with the challenge.
But, whatever you decide, be sure you have the best test for disseminated lyme and follow the collection and shipping directions exactly as all that matters a great deal, too.
And, as for treatment, it is the specific combination and rotation WITH supplement to support the immune, liver, adrenal and nervous systems. Probiotics are vital. Did you have all that with your previous experiences?
Also, with treatment, all the TBD involved need to be treated. If not, a patient can't get better. (TBD = tick-borne disease). All the abx (antibiotics) you had before, most likely, did not take into account possible coinfections.
Without support treatment from supplements, pharmaceuticals are much harder on a patient. That is true. Still, there are various avenues to take regarding treatment. But, it must be very specific and consistent to work, regardless of the protocol chosen -- regardless if allopathic, naturopathic, complementary. Most patients find a combination works best.
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Posted by iloveyou (Member # 20244) on :
I am SOOOO sorry about the spacing! I keep forgetting!
I should not be so clueless, because I have a hard time reading it like that also.
Please forgive me!
Posted by Keebler (Member # 12673) on :
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iloveyou,
That's okay and it's nice to know that future posts will have more breathing room.
good luck with your decision.
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Posted by bettyg (Member # 6147) on :
i love you,
yes, i'm like keebler and appreciate her taking the time to break up your long paragraphs into SHORT ones and double spacing it... yippee!
it's a learning experience here for all of us.
it was 35 yrs. before i was CORRECTLY diagnosed using igenex's western blot igm/igg !!! i had so many positives on majority of numbers and met CDC STANDARDS TO BE REPORTED!
so yes, it will pick up from decades ago! i've a perfect example.
as keebler said, there is NO TEST 100% at this time.
i too suggest you call dr. harris, director of igenex since you are in sweden!!
i gave you what few names i had for overseas from another lymenet member.
best wishes, and i don't envy you being way over there with no lyme literate dr. NEARBY to treat and diagnose you. Posted by Pinelady (Member # 18524) on :
Actually there is a lot of research coming from
Sweden. But testing is like here=they simply aren't
ready. I confirm what they have said here.
Whichever way you go do not send sample within 2
weeks of taking any kind of treatment. Either Homeo
or conventional antibiotics.
Posted by iloveyou (Member # 20244) on :
Thanks Pinelady... That is what is so absurd.
Sweden spends al this money on RESEARCH..but when it comes to helping people??? FORGET IT!
The system here is a TOTAL NIGHTMARE and yes, you are lucky you are not here!
You say do NOT sent the samples within two weeks of taking treamtement?
Do you mean I SHOULD take it?? As someone above wrote?
Posted by Pinelady (Member # 18524) on :
I did not want to waste more time or money
because I was so sick. I was fortunate to have
read peoples stories here where it took sometimes
multiple tests to find and I did not want that.
And I was very sick. But able to get to the
bathroom and forced myself to work. (If that's what you want to call it). I took
antibiotic of sorts for 3 months and stopped
-waited 2 weeks and had it drawn and still was
mostly IND but positive at critical points so I
got a +IgM from Igenex. So yes I would do the
antibiotic challenge first.
As soon as I was done with waiting- to draw, I
went right back to antibiotic since it had helped
me. And no-one else had. Igenex did request at
least 2 weeks with no antibiotics in system.
But you can call them if you are fluent and ask
for sure in your case. Or email them. I plan on
retesting after a few months on treatment just to
see if I get a Christmas tree but I am happy for
now I am getting better.
Posted by iloveyou (Member # 20244) on :
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