Ellen101
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posted
I previously tested positive for band 23 on the WB. My most recent WB in negative for all bands. What could that mean, I'm cured Posts: 1748 | From United States | Registered: Dec 2011
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droid1226
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posted
Results will vary every time you take one. I've had 4. Not one has been the same as the other. I would say that ALL negative bands would be a good thing though.
posted
I'm happy for you but most important don't let your guard down.
You are never cured only put into remission.
Anything can set it off diet, stress etc.
Keep an eye out for your symptoms . We don't want a relapse .
Myself my igenix came back negative , cd57 is way high it was a 20 or so.
Other test have also greatly improved. Pulse blood pressure all have been normal .Thyroid adrenal kidney liver lungs etc. . I'm a self functioning machine
I just do maintenance now with herbals and watch what I eat.
I have been in remission for over a year. Only slight if that ringing ears and insomnia.
I don't put my guard down just as slowly when it first appeared. It can slowly invade again .
So I keep up on it and planning for ears to Completely stop ringing . Insomnia lingers but do have a plan for that in the future. Will disclose that in near future.
So appreciate your test results and at same time appreciate how you feel.
Appreciate all the small things in life because with this disease you are easily robbed of fulfilling your own life dreams and others around you.
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GretaM
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Hey if you're feeling good...awesome!
Had 2 WB. Both time different bands were positive.
My doc says there isn't a test on earth that can really tell if lyme is gone.
So be diligent, keep stress low.
Congrats on feeling good Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Ellen101
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posted
My CD 57 is still very low, less than 20, but my LLNP does not put much stock in it.
My CRP which was elevated is now normal and my thyroid numbers have improved as well. Alot of this I attribute to no gluten, soy, dairy, starch or grains.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Cd57 needs to be brought up as in dr b guidelines.
It is a slow process .
The higher the better and less of a chance of a relapse. It is a great marker for lyme .
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Ellen101
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quote:Originally posted by lostlyme: Cd57 needs to be brought up as in dr b guidelines.
It is a slow process .
The higher the better and less of a chance of a relapse. It is a great marker for lyme .
So many Lyme Literate professionals don't agree. You could have people in treatment for years and their CD57 has never changed. Some feel wonderful and have never looked back and some still feel rotten. there could be other reasons for a low CD57 as well.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
I'm in the same boat as you, my Lyme showed up as ONLY IgM 23 on the LabCorp Westernblot. I have not gotten a Igenex test done yet to see if there is any change or any co-infections, but i've been feeling a lot better since everything started back in the beginning (April 22nd) the migratory pain is -almost- gone now, it's been getting better and better and less frequent as time has gone by whereas I maybe only have it once or twice a day instead of throughout the day.
The only symptom that remains other than that, is my left eye has started twitching intermittently throughout the day, that's only been going on a week and a half though and that could very well have been caused by all the stress i've been going through after finding out the results of my Westernblot.
I'm hoping Igenex will show that band 23 disappeared like yours did, which should -hopefully- indicate remission.
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TF
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posted
Remember that the Western Blot is NOT looking for the lyme bacteria. Instead, it is looking to see if you have antibodies in your blood specific to the lyme bacteria.
So, people who have had lyme in the past generally have lyme antibodies for years and years.
I completed my lyme treatment 9 years ago. Then, 6 years ago I was rebitten and got a bulls eye rash. So, I treated it for 30 days with my lyme doctor.
I am symptom free and have been for 9 years.
Almost 2 years ago, my ENT decided to test me for lyme disease. I had a Western Blot from LabCorp. It came back IgG band 41 positive, and IgM bands 41 and 23 positive.
So, according to LabCorp, I am positive for lyme. But, as you see, I don't have lyme disease. I have lyme antibodies. (I had a sinus infection at the time of the test.)
So, I will likely keep antibodies to lyme in my blood for many, many years. (I had it undiagnosed for 10 years at least, and I treated it for 3 years before cured.)
Dr. Burrascano says that if you don't relapse in 3 years after stopping treatment, then you won't relapse. So, I say I am cured. I praise God for that every single day.
So, for some reason, you don't have antibodies to lyme showing up. That has nothing to do with being cured.
Who did the test? Igenex or the Quest/LabCorp people?
See the following quote from Burrascano that says that blood tests indicate exposure only (including in the past) and not active disease:
"DIAGNOSING LATER DISEASE
When reactive, serologies indicate exposure only and do not directly indicate whether the spirochete is now currently present." (page 7)
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Ellen101
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posted
Both tests were done by Quest. I'm confused as to why 2 yrs ago Band 23 was positive and now it is negative..
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TF
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posted
In the latest test, Quest didn't find any lyme antibodies.
That can be because Quest did a lousy test, there weren't any antibodies in the sample they tested, the technician made a mistake, or your body stopped making antibodies to band 23.
If I knew more about blood testing, maybe I could come up with more reasons, like the blood sat and clumped, causing a false negative test, or you were on steroids prior to the blood test causing a negative test, or a million other possibilities.
I wouldn't waste any time thinking about it since it is rather meaningless.
An antibody is your immune system's reaction to the lyme bacteria. The immune system makes the antibody to fight the lyme. It keeps these antibodies in your blood for a period of time.
But, if the immune system is fooled by the lyme (such as when the lyme cloaks itself in your own cells, for example,), then the immune system will NOT make lyme antibodies even though lyme is present.
That is why many people with lyme disease test negative on the Western Blot--a test looking for antibodies.
So, that is why it isn't worth trying to figure out why you now have a negative band 23.
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Ellen101
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Thanks TF. Perhaps the first test was the error. I guess what's important is how I feel, which is good
Mystery I assumed my eye twitch was due to lyme when it was actually due to thyroid issues. I am now on Armour thyroid and no twitching Posts: 1748 | From United States | Registered: Dec 2011
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posted
Well, I recently had Thyroid levels checked and they said "normal" but I don't know if they could come back normal and still cause the twitching or not. It's something to think about for sure, though.
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Ellen101
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I had undiagnosed Hashimotos. It is important to have the right thyroid tests run. Many do not. This web site is helpful http://www.stopthethyroidmadness.com/Posts: 1748 | From United States | Registered: Dec 2011
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Catgirl
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quote:Originally posted by TF: That can be because Quest did a lousy test, there weren't any antibodies in the sample they tested, the technician made a mistake, or your body stopped making antibodies to band 23. ... An antibody is your immune system's reaction to the lyme bacteria. The immune system makes the antibody to fight the lyme. It keeps these antibodies in your blood for a period of time.
But, if the immune system is fooled by the lyme (such as when the lyme cloaks itself in your own cells, for example,), then the immune system will NOT make lyme antibodies even though lyme is present.
That is why many people with lyme disease test negative on the Western Blot--a test looking for antibodies.
So, that is why it isn't worth trying to figure out why you now have a negative band 23.
TF is right. I got bit again and all my bands tested negative. Then came the lyme symptoms.
-------------------- --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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Ellen101
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It seems like a catch 22..You can test negative because you actually don't have lyme or you can test negative because you do...I guess the fact that I originally tested positive for band 23 and felt horrible and now feel really good and test negative will help me to believe the first time was either an error or now its gone Posts: 1748 | From United States | Registered: Dec 2011
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TF
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Ellen, I don't think you are understanding the test.
I test positive and I DON'T have lyme.
It is a test for antibodies. Do you think that when you no longer have lyme you will also no longer have lyme antibodies?
If so, you do not understand antibodies. The body keeps them in the bloodstream for a long time.
Say, for example, that you got measles. When the measles were gone, you would still have antibodies to measles in your blood. This is the body still being on the alert to fight measles.
So, the fact that you do not show any antibodies to lyme from the lousy Quest test doesn't mean anything. It means to me that Quest is wrong. You should still have antibodies to lyme in your blood.
This way, if you got lyme again, the antibodies would be right there to attack it.
If a person doesn't have any lyme antibodies, it can take up to a month to make them. That is why a person first bitten with lyme will never test positive through Western Blot. It will take their body at least several weeks to make lyme antibodies.
So, why are you happy that you don't have lyme antibodies in your blood anymore?
If that is correct and you are rebitten, it will take your body about a month to make antibodies and start fighting the lyme. Is that what you want?
Better to decide that the Quest test is lousy.
I still have lyme antibodies in my blood and I haven't had lyme or lyme symptoms for at least 6 years! or 9 years if you don't count the bulls eye I had 6 years ago. My body is still prepared to fight lyme at the drop of a hat.
If you believe this Quest test, your body is not prepared to fight lyme disease anymore. I would wonder why.
I suggest you go by symptoms to decide whether or not you still have lyme. This test, being an antibody test, cannot say whether or not you have lyme disease. See the Burrascano quote above where he says that.
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Ellen101
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Tf I do understand but there is also the possibility the first test was incorrect to begin with.
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TF
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Well, if you get a positive band on a Western Blot, that cannot be incorrect.
If you understand what has to happen to get a positive band, you will see that a positive cannot be incorrect.
The only way a positive could be incorrect is if they tested somebody else's blood and reported their results to you. In other words, if they mixed up your results with someone else.
So, negative results are often incorrect, for about 30 reasons. But, positive results can be trusted.
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Kudzuslipper
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So.... Controversial I know... But my pcp tests me every three months... She and I can correlate when I'm feeling bad or good depending on my Elisa total load as well as bands appearing and disappearing. Except for Igenix test, where I had several Lyme specific bands, I have consistently only had band 41 positive in both IGM and IGG. When I was feeling well, I had no current infection band ( I can never remember which is which) when I started feeling bad again. I had both bands back.. And a higher load of antibodies on straight Elisa.
I'm glad your feeling better Ellen. Ya know, I don't know what to believe anymore. But help managing symptoms is what is important to me now. Seems like you have found what works for you!
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Ellen101
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Thanks Kudz. At this point I feel it is beneficial to focus on the positive and not drive myself crazy with what this all means as I honestly don't think anyone truly knows for sure.
At some point it is important to look beyond lyme and move on..
Posts: 1748 | From United States | Registered: Dec 2011
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quote:Originally posted by Ellen101: I had undiagnosed Hashimotos. It is important to have the right thyroid tests run. Many do not. This web site is helpful http://www.stopthethyroidmadness.com/
So true.
Most dr including a lot of Endos do not understand proper thyroid testing which is perplexing to say the least. Most will rely on only TSH.
Rt3 ( reverse T3) is also something that should be checked.
posted
So true, Ellen! I think we've all felt like our identity / validation as a sick person has been screwed by the flawed testing, so it's easy to get obsessed and defensive with it.... but Ellen's right. Life goes on.
But... a couple thoughts on this string might be nice to clear up. (Forgive me if this is all Captain Obvious stuff)
1) Freely circulating antibodies often go *do* away after an infection is controlled or the antigen (part of a bug) is no longer stimulating the immune system. That's why we get "booster" vaccines. That doesn't mean that the immune "memory" of that bug is gone, it just means troops ain't indefinitely deployed. Borrelia seroconversion and immunoglobulin clearance seem highly variable between individuals in many species.
So you might have circulating antibodies to OspC and test pos for band 23 on your first test. A few weeks later Bb stops making OspC (or maybe it's is cleared from your system! and then a year later maybe you no longer need circulating antibodies and you'll be band 23 neg on your WB.
Both tests are "right" depending on your personal timecourse, immune response and pathogenesis. If only we could run monthly WBs and see trends in the bands... we could all go bankrupt much more quickly.
We have GOT to get bettter diagnostics R&D funded, by govt or private sector. There's some congressional bill for vector-borne dz funding visibility. i hope everyone contacted their reps to support the bill.
Ellen101
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posted
Thanks SickSci all that info was very helpful. I have an appt next week with my LLNP so it will be great to hear what she thinks about all this.
Compared to how I felt 2 yrs ago when I did show a positive band is night and day difference to today.
l
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