posted
Seems to make sense since bacteria is so hard to detect in blood. But on other hand I dont know if bacterial concentration are high enough for it to be detected in random tissue samples. So anyone has any experience with it ?
Posts: 856 | From MA | Registered: Jul 2009
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seekhelp
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Member # 15067
posted
Yep, did it through Clongen. Nothing found in muscle tissue. Keep in mind this was from someone who Igenex finds all kinds of bands. Not encouraging at all to me. Based on my symptoms, there is no reason the Lyme bacteria shouldn't have been in this muscle tissue.
Again, it gives me concerns about either Clongen and / or Igenex.
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massman
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posted
Good points, seekhelp.
Reminds me of that Beatles lyric: "I say yes, you say no".
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Again, it gives me concerns about either Clongen and / or Igenex.
It gives me concerns not so much about those particular labs, but on the antibodies test itself. Antbodies test reveals whether there are antibodies or not .
Having antibodies does not necessarily means you have present infection - I was so wrapped up in thinking IgM only appears when infection is present, but that not in fact the case. Even IgM can persist for many many years
Problem with PCR you have to have actual bacteria in sample and in many cases you just dont get it in the sample (thats why PCR is so unreliable for testing).
So I am kinda back to step one detection wise. - Positive WB only means there was exposure to it at some point. Doesnt tell anything about present state, unless I can find information proving that IgM for BB dissapear after short time
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Aniek
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Member # 5374
posted
Yes. I had a liver biopsy and we had them take a second sample to send to MDL. It was negative. But remember, a PCR test is like looking for a needle in a haystack but you just take a small sample of the hay.
Just because you have muscle pain doesn't mean the Lyme is in your muscle. The muscle pain could be a systemic symptom in response to Lyme impacting the nervous system or causing inflammation.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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massman
Unregistered
posted
Use the symptom survey to assess your present srate. Do it once a month.
You may want to change it by rating each symptom: 0 = not at all 1 = occasionally 2 = more often 3 = close to all the time
Total each section so you can see if there is improvement or backslide and total change also.
Here we are turning subjective into objective. You may like that.
There are no reliable ways to really physically test for presence and intensity. It is sneakier and puts up false fronts more than humans do.
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I have to get a endometrial biopsy in a couple weeks,I was debating whether to ask my dr to send it to be tested for lyme. I'm just scared though that it will come back negative and give them more credence in their opinions that I don't have lyme. When is someone going to come up with a definate test?
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Massman - good reminder on the symptom scale. Many LLMDs use something similar prior to each appt. Very helpful.
My biopsy (endoscopic) came back PCR negative.
Bloodwork - PCR positive.
There was a recent thread here (in Sep) about an endoscopic PCR biopsy that came back positive after the patient had had no active Lyme symptoms for some time.
Just found that thread via search, but the contents of the thread have apparently been deleted - probably for privacy reasons.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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quote: Use the symptom survey to assess your present srate. Do it once a month.
It is not a question of symptoms. It is a question of whether symptoms were caused by lyme. For that I d like to know for sure whether I have bacteria present or not .If I were to measure therapy effectiveness overall then yes I would use symptom chart. (still not objective as symptoms are subjective thing -logging them does not make it automagically objective, its more reliable than from memory but still not accurate and reliable measure)
quote:Originally posted by cactus:
My biopsy (endoscopic) came back PCR negative.
Bloodwork - PCR positive.
So that kinda means "positive no doubt" ? Unless PCR in blood detected only old bacterial DNA (which I find unlikely after long time , cause dead bacteria in blood should be cleared out by immune system rather fast)
quote: There was a recent thread here (in Sep) about an endoscopic PCR biopsy that came back positive after the patient had had no active Lyme symptoms for some time.
I would think PCR is as reliable as it gets -it detects the DNA from the organism . Not just marker stuff like antibodies. Only more reliable thing I guess is direct observation of organism
Posts: 856 | From MA | Registered: Jul 2009
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massman
Unregistered
posted
OK - I give up with suggestions !
Do not change internal terrain (which diet really contributes to) to get well !
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
coltman, yes, I would tend to think the PCR positive in the bloodwork would mean no doubt that it's Lyme.
How else would one have spirochetal DNA circulating?
It's been quite some time since I researched this, but when I did, I found an article stating that it can take up to 6 weeks for the body to clear the dead bacteria from the bloodstream.
Sorry not to offer a link to that - if I find it, will post it here.
The problem with PCR is that there are often false negatives.
To further muddy the waters - at the same time I received positive PCR via blood, also received a (technically) negative Igenex WB.
Had a few Lyme-specific bands. But not enough to give a CDC positive.
It's very difficult to get a definitive diagnosis.
Have you read Burrascano's comments on PCR testing?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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quote: The problem with PCR is that there are often false negatives.
Yeah sensitivity is low. But if you do get it positive there is almost no doubt its there
quote: Had a few Lyme-specific bands. But not enough to give a CDC positive.
CDC positive = IgM AND IGG? IgG seems to be rarely formed in chronic lyme. I suspect immune suppression and evasion is the cause. I dont see any value holding to CDC standard. It is not diagnostic (they even say that themselves), it is made specifically to capture only very clear accute cases, their criteria is useless to be used as a diagnostic one.
If you had lyme specific bands I wouldnt call it negative. Only prob it doesnt show whether its just antibodies or active infection. I had hope I could rely on igm but seems it is not the case
quote: It's very difficult to get a definitive diagnosis.
Have you read Burrascano's comments on PCR testing?
In his guidelines ? -yes. I dont know though if there is point trying to get PCR positive by multiple blood draws -it kinda makes sense, but who is gonna order them? I bet my insurance already barks at my pcp for ordering too many tests. They already called me and tried to find what is the reason I had so many tests done
If there were a threshold and protocol for reliable PCR BB test (like how many blood draws you have to make , what time ,what is summary senstivity of all of them) . Plus you have to be off abx for 6 weeks.
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