posted
Can anyone please shed some insight about how lyme can indefinitely be diagnosed?
You must mean definitely diagnosed? Unfortunately there are situations where it can be confirmed one way or the other without a doubt but there is a large area of grey where its not possible. That is one of the cruxes of the Lyme debate and controversy. Welcome and sorry.
The testing appears to be limited and I am kind of confused aboout when a positive is definitely a positive.
My questions:
1. What is/are the most accurate tests for lyme?
That is somewhat of a loaded question. Depending on who you ask, you will get different answers.
If you ask an IDSA doctor, you will be told the CDC 2 tiered antibody ELISA -> Western Blot at a reference lab is the most validated test. They will also tell you the C6 peptide ELISA is comparable.
But many people and doctor's experience is that these tests have serious weakness's and have not been validated against a gold standard such as a culture or more modern molecular test based on DNA or RNA detection such as the PCR.
This is true and it does appear the CDC 2 tiered test misses a significant number of cases and is biased toward avoiding false positives at the expense of missing many cases.
There is a long list of reasons this test has these "holes" and it has not been changed since it was defined in 1994. A lot has been learned since 1994 about Lyme which has not been incorporated into how these tests work. Its among the largest complaints in Lyme and is one of the core problems leading to the Lyme debate.
2. Are the results a positive/negative or on a continuom, for instance 1-5 is negative and 5 and above is positive?
If you are talking about the standard CDC 2 tiered test, then the first tier ELISA has a value which when low is a negative, in a middle range is equivocal or "maybe" or above a certain level is a positive.
In this standard test, if you are in the equivocal range or positive, they follow it with the Western Blot to confirm it.
The ELISA just tests whether there are antibodies in your blood that bind to the Lyme surface protein antigens in the test. These are the outer proteins of the Lyme spirochete that your immune system B cells detect and create antibodies that recognize and bind to.
There are many issues but this test is made from the surface antigens of one strain of Lyme found in the Northeast in the 90's and is popular in research labs. But if the strain you caught was different or your immune system didn't produce the exact right antibodies to the same antigens, an ELISA on your blood and its antibodies might come up negative. If you come up negative, regular doctors will stop and not proceed to the more precise Western Blot.
It detects each antibody of each surface antigen and shows them individually in a band. The standard version requires you to show either 2/10 or 5/10 IgM or IgG antibodies respectively.
Its a little better because seeing the specific antibodies can be used based on which ones are seen. But this test uses the same strain so can be fooled for a variety of reasons just like the ELISA.
3. Don't most people have mycoplasma in their bodies?
That has nothing to do with Lyme and there are multiple types of mycoplasma and whether you have one of those by its ELISA or IFA, its unrelated to Lyme. Why would you ask?
4. Does antigen mean that disease is active?
An antigen is just a piece of the bacteria which could be a complete protein or a peptide which is a fragment. If you had a way of knowing for sure that there were lyme antigens in you blood or urine, it would be strong evidence an infection is ongoing since the spirochetes and their pieces which are the antigens are eventually cleared out one the infection is over.
5. How is the distinction made between lyme or depression or some other condition?
A carefully done diagnosis which takes everything into account. For example, if you lived in an area known to have lyme, were bitten by a tick and developed a rash, it would be obvious.
Or if you had the standard 2 tired test and showed 9/10 IgG antibodies, it would be obvious.
But most people are not aware they were bitten and didn't recall a rash. So that forces a doctor to lean more heavily on symptoms and test results.
But you could have Lyme and have a false negative test and most regular doctors have too much faith in the tests so would miss a Lyme diagnosis. That's why so many people are caught in the middle and unsure. There are other tests one can run and by looking at the combined results plus symptoms, the odds of a good diagnosis is better plus there are doctors who are better than others.
6. What additional medical testing would support a lyme diagnosis, for instance CBC or elevated liver enzymes?
You need to find a doctor with experience but in general, only the Lyme specific tests are useful in detecting Lyme and standard tests like CBC or liver enzymes are usually normal.
Posts: 53 | From Jupiter | Registered: Aug 2013
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Thank you! Your explanations were so imformative. I am trting to prepare a list of questions and gain a general understanding before the appt with the LLMD.
My brother is 35 years old and has tested positve for anaplasmosis and mycoplasma (through a holistic medical doctor).
His PCP however is unwilling to accept this as a viable possibility, advising my brother that he is depressed and wants to treat him with psychotropic meds.
I suggested that he ask his PCP to run some labs to check all his levels. At one point he tested as slightly anemic and tested with slightly high liver enzymes. He also has low Magnesium and his immune system is poor-cannot gain weight-takes along time to get over a cold. Is this unusual with a bacterial infection such as anaplasmosis?
-------------------- MDD Posts: 6 | From Allentown | Registered: Aug 2015
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posted
"Thank you! Your explanations were so imformative. I am trting to prepare a list of questions and gain a general understanding before the appt with the LLMD."
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you are welcome. Its a terrible mess.
That is a very good idea because most people end up starting with a PCP who typically ignores any reference to Lyme as they have been "poisoned" by some Dogma's held by the IDSA or ID doctors and most PCPs defer to specialists. Its a rare PCP who will not just defer to an ID specialist or has been educated through ID seminars or other methods to be particularly resistant to Lyme. Its sad but true.
"My brother is 35 years old and has tested positve for anaplasmosis and mycoplasma (through a holistic medical doctor)."
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As with all doctors, they are people and some are good and some are not. I would find a good LLMD with experience but sounds very logical and not too quick to diagnose Lyme. In the same way ID doctors are stuck wit a strong Dogma around Lyme, there are some LLMDs that counter react and seem a little to quick to diagnose Lyme. You need an LLMD that seems to have a very critical view and does a thorough analysis.
All blood tests can have problems and the infectious disease tests such as IFS, ELISA, Western Blot etc,,, are particularly problematic. So I would strongly recommend not just believing any single test but to ask for multiple complimentary tests to help avoid basing everything on one test whether positive or negative.
"His PCP however is unwilling to accept this as a viable possibility, advising my brother that he is depressed and wants to treat him with psychotropic meds."
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His PCP is typical but make sure the LLMD or other doctor isn't the opposite and too loose. A smart experienced LLMD will take everything into account and run multiple tests to be sure. Depression can be a side affect of the constant symptoms affect of Lyme ( or lots of things ) but getting to the root of the problem is important before jumping to antidepressants or similar medications. They have their side affects which can complicate getting to the root cause.
I suggested that he ask his PCP to run some labs to check all his levels. At one point he tested as slightly anemic and tested with slightly high liver enzymes. He also has low Magnesium and his immune system is poor-cannot gain weight-takes along time to get over a cold. Is this unusual with a bacterial infection such as anaplasmosis?
It certainly is important to supplement any low mineral like Magnesium but Lyme rarely has other tests that consistently show one way or another and cannot be related to another cause. The CD57 is popular but it can be low due to many infectious problems that impact the immune system. Its one type of T cell ( T cells have markers on them named by a number 0=x) where 57 is the type of surface marker. Once Lyme is virtually proven, the CD57 often correlates with the severity where a low number like 30 is not good where 200 is very good. Its not been validated and is not Lyme specific. Given the lousy Lyme tests, its easy to go down the wrong road, in either direction.
To make it worse. Later stage or chronic lyme is not easily treated. If it comes to Lyme treatment, recent research suggests pulsing antibiotics on and then off may be more effective than just a standard course.
Its been seen where antibiotics force some of the Lyme spirochetes to go into a dormant state called a persister which is antibiotic tolerant. So by pulsing antibiotics on and off, the persisters come back to mobility during the off times and then become susceptible. Constant antibiotics may just kill all the non-persisters and when you finally stop, they come back. Jus about every doctor that tries to treat Lyme uses a different strategy to make it worse and the PCPs won't do anything.
Here are some of the basic questions that could be helpful.
Did your brother live or spend time in an area with Lyme such as the Northeast or Midwest or Northern CA such that exposure could have happened.
Does he recall any tick encounters? The baby nymph ticks are so small they are often not even seen. They are the size of period in newspaper text and their bite can go unnoticed.
Does he recall a rash that might have been the classic EM rash. Only a little more than half of infections have a noticeable EM rash and some go unseen.
How long has this been going on?
What are the symptoms and their history?
Has a full diagnostic workup been done looking at biological rather than psychiatric causes? Today's 10 minute doctor visits have sacrificed the concept of a thorough differential diagnosis and things like Thyroid problems are often just overlooked in favor of antidepressants which are a cheap cop out.
In parallel, force the PCP to perform a differential diagnosis which looks at all possible causes of the symptoms.
Its complicated when all the doctors say different things.
Good Luck
Posts: 53 | From Jupiter | Registered: Aug 2013
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I assume he is HIV negative.
He should be tested for other kinds of immune deficiencies - like Hypogammaglobulinemia and/or CVID. (.."takes long time to get over a cold")...
Do you by chance have copies of test results - including a chemistry/metabolic panel?
Some of the panels show Globulin and A/G ratios. Are those in range - or one low/one high? That is a clue in regards to immune deficiency. (low Globulin - high A/G ratio).
The tests for immune deficiencies include:
IGG total and subclasses IGA total and subclesses IGM total
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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