Hey all. I posted here before and loved everyone for their responses - ya'll really help. But now I got another question..
I managed to get a hold of some of my medical records (finally after 6 months of bs I don't even want to think about) and I reviewed them very carefully. I looked at my lymes test and it had listed next to it all of the ranges for normal, and posivite. The range was as follows:
INTERPRETATION: NEGATIVE =160 U/mL
My result was 906. Is that something to be concerned of? Like - what happens when it gets worse?? (Other that the fact of Lymes of course)
What lab and what test was this? Different labs have different combinations of tests and use different scales to measure against.
If I'm reading correctly what's above, the test has three ranges: negative, borderline, and positive.
And your test result is ... more than 5 times higher than the minimum number required for a positive result?
As in: 160 minimum number for positive x 5.6 = your score of 906.
I would read that as off-the-charts positive, but don't have any other data to go by.
What did the doc tell you when your test results were discussed with you?
What lab did the test, and what is the name of the test, or whatever wording is on the slip? There are many different kinds of tests and many different labs, and they all operate and report differently.
Does it say what kind of test it is? Does it say ELISA? That is the most common screening test. There is also an IFA test, but the ranges are different for that. On the IFA, less than 80 is officially negative, although IGenex calls 40-79 Equivocal.
If you had a result over 900, somewhere it should say POSITIVE either next to your result, or elsewhere in the explanation. If your ELISA was positive, the lab should have automatically run the second test, a better one called a Western Blot. It lists a bunch of "bands" by number and puts little plus signs next to the ones with a positive reading. Which ones you have and how many is how the lab interprets it as positive or not based on the CDC test protocol.
The ELISA by itself is not definitive of anything. It is actually useless for Lyme, but some of the members of the IDSA Lyme committee who recommended it as a screening test held some patents on it and benefit financially from its use. (That is why the CT Attorney General filed an anti-trust suit against them a few years ago.) With millions of ELISAs run annually, it probably produces a nice income.
If I were you, I'd call the lab in the morning and ask them for clarification on the result you're looking at. If it is indeed positive, then ask why they didn't run the Western Blot. If they did, ask them to send you a copy immediately, and ask if they'll tell you verbally whether it was positive or negative. If necessary, tell them your doctor refuses to give you a copy.
Negative doesn't mean much. You have to look at the specific bands listed to see if you have any that are Lyme specific. Yes, labs and doctors should do this for us. But the CDC has botched it terribly by using an interpretation that misses too many cases. (I hope this isn't an example of what government intervention in health care will look like in the future!)
If the lab balks and says the doctor should tell you, just say that you're no longer seeing that doctor and you've had great difficulty getting anything out of him. Say that the doctor told you it was negative, but it appears to be positive on the lab report.
(You might consider filing a complaint against your doc. It is against Federal Law to withhold medical records. There is no excuse for stalling you for six months! If your Lyme tests were positive, it could explain why his office has tried to avoid sending you copies. They could be trying to cover up medical errors. There's liability in misrepresenting lab reports that leave a patient unnecessarily sick for six more months.)
If no Western Blot was run, then get yourself to a new doc, ideally a LLMD, and order one from IGeneX. Actually, you'll need another doc no matter what. Have you tried to find a LLMD in your area yet?
P.S. And yes, the posting process here seems to remove text in between the less than and greater than symbols. Don't know why. Probably a bug.
From your post above: "But the CDC has botched it terribly by using an interpretation that misses too many cases. (I hope this isn't an example of what government intervention in health care will look like in the future!)"
That is exactly what healthcare will look like very very soon. The govt will pick and choose what standard shall apply, and I'd put a fair amount of money on the CDC standards winning, with no permitted alternatives ... kind of like trying to get Lyme treatment in Texas: Not. Going. To. Happen.
Jackie, You make me laugh when you remind me how I did not get any treatment in Tx and my doctor threw me out of her office because I insisted on answers about why I was positive for MS, Lupus, Hoshimotos, hemochromatosis , vasculitis, EBV, CFS, fibromyalgia. I couldn't walk without a walker but she acted like I was bothering her for wanting answers,
As for the original question, it seems positive to me too and I agree with Rico to see an LLMD and get IgeneX tests.
Also some LLMD can diagnose from symptoms alone. My Babesia test first came back negative and my LLMD diagnosed it from the symptoms alone.
Thank you for the helpful and understandable reply. I apologize for my poorly posted question because I didn't include a lot on info; sorry!
The test, which the above said results are from, that was performed was a "Lyme Ab-Blood, Routine(EIA)"
I was told that my "Test was a rather high positive, so we really advise taking an antibiotic for at least a month." I heard sometimes they give out 2 weeks of antibiotics in the area, but I insisted on the month long course. I received a month of doxy and then they performed the western blot test:
7/14/11 15:56 Lyme Western Blot, IgG Fasting-No
Reported to Public Health - LYBLG (07/16/2011 01:02)
LyBl-IgG:Band 18 Present
Band 28 Present
Band 39 Present
Band 41 Present
Band 66 Present
Band 93 Present
After this was found, I received a month of amoxicillin and haven't received any treatment since then (med wise). These tests were performed by rheumatologist. I am told from all my other doctors i have seen (10+) that another blood test is worthless; there is no more data to be found. I was told by an infectious disease doctor that I am practically disabled however all of my symptoms have nothing to do with Lyme and that it's probably a depression / anxiety issue. I was told that my symptoms (migrating pains that are horrible and has practically disabled me effecting my shoulder blades, my entire legs, elbows, and especially my deep inner knees; Some hyperactivity in the arms and legs, trembling throughout the body, cold intolerance which is great for Wisconsin, cognitive impairment, anxiety from the pain -.-, sleeplessness) do NOT associate with lymes disease and that I need to pursue further Neurology care. (This is after I've have seen my neuro that I am recommended back to neuro)
My Neurologist that I saw for 6 months doesn't know what to do with me other then investigate lymes. She is uneducated in the disease and told me she can no longer see me and referred me to two unhelpful lymes doctors who lied to me about how lymes works, its symptoms, and how it is cured. One doctor's notes even claim that "I DIDNT WANT TO FURTHER PURSUE LYMES BECAUSE OF EXTENDED ANTIBIOTIC USE." - this is bullcrap! The doctor who stated that in his notes is the doctor who told me that "it is dangerous to treat lymes because you have to have extended use of antibiotics, which is dangerous to your health! Beside, antibiotics seem to only help about 10% of patients." I told him i would like to pursue treatment and then he told me that I don't have lymes disease, there is no way to tell if I still have lymes or ever even got it, and that he wouldn't allow someone my age to use antibiotics for over 30 days because of the health risks. So basically he told me I can't get fixed.
ANYWAYS, how bad is that test result (the first one)? Having over 5 times the positive amount; is it a concern anymore then just the disease. The more infection that is in me, the worse it will be? I am not specifically educated in health but I understand the basic concept a lot of it.
THANK YOU THANK YOU THANK YOU everyone! You guys are awesome.
Mojo, you are THE poster child for all that is wrong with mainstream medicine's approach to Lyme+! You are amazing, with all you have been through and continue to deal with, that your spirits are so high.
About filing a complaint ... I'd think twice about that, tho it may be well MORE than justified, but the docs just play hide-the-ball and blame-the-patient, and their malpractice carriers have lawyers who do nothing but blame the patient from day one and play weasel games.
It's ultimately a drag on one's own energy, when there are so much more important things to be doing, like getting well. These j*ck*ss docs will get theirs, someday, somehow, in the great karmic circle.
You give good data -- don't worry about parsing those odd numbers that you first posted above. EIA is short for ELISA, or enzyme-linked immuno assay: "The indirect ELISA test is one that determines whether a specific antibody (e.g., HIV antibody) is present in a sample such as serum." Meaning the test can't 'see' the actual bacteria, it just looks for the immune system's reaction to the presence of the bacteria. The ELISA test approach is also used in other ailments. The second-round test, Western blot, is used to confirm the ELISA result and rule out false positives from ELISA.
The list of bands in your post above are labeled LyBl, meaning Ly[me] Bl[ot] -- IgG [=immunoglobulin G], which the immune system creates later in an infection. (IgM is created earlier.)
As to the specific bands stated as 'present' in your tests, following are the comments made a while back on a website called truthaboutlymedisease [dot] com:
Band 18 -- "highly specific to Lyme -- many LLMDs say if this band alone is positive, you have Lyme"
Band 28 -- "unknown"
Band 39 -- "is a major protein of Bb [Borellia burgdorferi, the scientific name for the Lyme bug]; specific for Bb [meaning nothing else but Lyme will make this band light up on the test]"
Band 41 -- "flagellin [whiplike tail] of all spirochetes [spiral-shaped bacteria, which includes Lyme and syphilis, among others]; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme"
['not specific' means something other than Lyme could also cause a reaction on this band]
Band 66 -- "common in all bacteria" [so could be Lyme, or not]
Band 93 -- "unknown, but probably the same protein as in band 83, just migrates differently in some patients" [and band 83 is specific to Lyme, probably a cytoplasmic membrane, so this counts too]
So your test results on the Western blot would, to my understanding, tend to indicate Lyme.
Which leads to the obvious question: with this kind of evidence, why won't the docs diagnose you with Lyme and get on with treatment?
In a word, FEAR. Docs fear losing their licenses to practice medicine, if they go against the prevailing 'wisdom' regarding any ailment. This ailment happens to be Lyme, but the same thing happened with AIDS. The medical profession was blindsided by the emergence of AIDS, a totally unknown and unusual infection that just didn't fit into the tidy boxes the medical profession had constructed. There was great fear everywhere that AIDS could be spread like the common cold, and the medical profession had no idea what was going on, so to quell panic, some time in the mid 1980s, a doc high up in the CDC hierarchy went on national TV in his long white coat, stethoscope draped around his neck, and intoned very solemnly that if you were not gay or Haitian, you could not get AIDS. Full stop.
Well, any thinking person knew THAT was balderdash, but the docs were caught so flatfooted that they went to ground and simply denied the obvious fact that a virus doesn't give a d*mn where you're from or who your sweetie is.
We are still in a similar place with Lyme and its co-infections: deny, deny and obfuscate. Make the patients out to be nut cases. Make the Lyme docs out to be charlatans. Threaten docs who treat Lyme aggressively that they will lose their medical licenses -- it has happened that some very good docs have been relieved of permission to minister to patients.
Notice that the docs you have seen are in the fields of infectious disease (ID), rheumatology [joint inflammation] and neurology [nerves and nervous system generally, including the brain]. These are the logical fields to have knowledge of what to do about a disease like Lyme, but the official position of each of those areas of medicine is that (1) Lyme is not serious and will go away with a couple weeks of antibiotics; and (2) any continuing symptoms are called 'post-Lyme syndrome', meaning lingering symptoms to a now-gone infection ... kind of like limping after your broken leg has mended.
The obvious answer -- that the infection continues -- is rejected out of hand, and co-infections (bonus diseases carried by the same ticks as Lyme) are largely ignored. The docs who first identified Lyme several decades ago are still around, and they have political power within the medical establishment to keep their outdated diagnostic and treatment 'guidelines' enforced. Wormser and Steere are two names you will see in this connection.
How do the Powers That Be in medicine keep their clout? Each specialty in medicine has its own standards of practice for various ailments and conditions, such as the Infectious Disease Society of America (IDSA), and the other specialty areas tend to defer to whichever specialty an ailment falls into.
IDSA is the bunch that clings to the short course of a single antibiotic as sufficient for curing Lyme, and any doc who departs from that treatment standard does not have the ability to point to the [IDSA] standards and say 'But it's what the experts have determined!' Docs are understandably afraid of that, because the government and its affiliates (such as the CDC, Centers for Disease Control) look to groups like the IDSA to ... set standards of diagnosis and treatment!
Thus an unbreakable circle is created, and any doc who goes outside those supposedly superior 'guidelines' will almost certainly be hung out to dry by the IDSA etc. and other docs in the event of a malpractice claim against the errant doc. So most docs will stay inside the virtuous circle of IDSA and CDC standards, never mind what the docs' own critical thinking abilities tell them. I think there are many docs who are sympathetic to the ILADS approach, but are simply afraid of losing everything if they go against the IDSA/CDC standards.
We do not post LLMD's names here in the open for that very reason. Some states, like California, have freedom of conscience laws, under which docs are permitted to practice according to what they believe is right; that provides protection for them against the state and local medical boards. (And even in freedom-of-conscience states, docs risk being shunned by referral sources etc.) In other states, like Texas, there are no such 'conscience' protections, and any doc who practices outside the state medical board's treatment guidelines can be punished and even stripped of his/her medical license. That is why there are no LLMDs to be found in Texas, except for perhaps some very brave ones hiding out quietly; I have not heard of any at all.
So that's the politics of Lyme. Now a brief foray into the horrors of 'too much antibiotic treatment', as you have been hearing from your docs. Yes, docs over-prescribe antibiotics (such as doling them out for viral infections, which are not cured by antibiotics), but 10 to 14 days of antibiotics for some bacterial infections is simply not enough, and that is established fact in the medical community: tuberculosis is routinely treated with 18 months of antibiotics; and Hansen's disease (aka leprosy, which does still exist in some remote areas) is another. The reason is that bacteria are most susceptible to being killed when their cell wall is disrupted during reproduction, and TB and Hansen's AND Lyme all reproduce very very slowly, meaning that the antibiotics need to be present for a much longer time to ensure enough opportunities for the antibiotics to kill the dividing bacteria.
Thus the excuse that it is wrong to treat Lyme for a lengthy period of time makes no sense, but the medical community is not engaging rationally on this point for reasons I cannot fathom.
And one more thing: Lyme has the ability to shield itself inside the body away from the bloodstream, where antibiotics and the immune system cannot easily reach. These shields are called 'biofilms' and prevent the immune system (and regular antibiotics) from locating and killing the Lyme bacteria. That is why LLMDs often treat Lyme with two antibiotics at the same time: one to pierce the biofilm (such as Flagyl), and another to kill the bacteria.
The docs you have seen are afraid of being hauled up before the state or local medical board in states (like Texas) without freedom of conscience laws to protect docs, so the docs cave in ... and I'm sure some of them actually believe they are doing the right thing. The IDSA says that, after a few weeks treatment with a single antibiotic such as doxy or amoxicillin, any remaining symptoms are your immune system over-reacting to the now-gone infection, a so-called 'post-Lyme syndrome.' The most logical explanation, however, is that the infection is not gone, but the IDSA/CDC docs don't want to go there.
If not already mentioned above, you can email to
contact [at] ILADS [dot] org
and tell them where you are and how far you can travel to see an LLMD; they may have names to send back to you.
Skulking around sites like this can also yield some names, but be cautious. And for that matter, be cautious with ANY doc -- they are only human, and Lyme is a confusing and fast-changing area of medicine with much still being discovered.
Also, simply google/searching for
LLMD [city and state]
may turn up some leads from local/state Lyme groups.
In your situation, I would find an LLMD without delay, and plow ahead. Keep your own set of test results for all of this, because sometimes it's necessary to change docs and you may not later get everything in the file that could be useful in future. My position is: "I paid for the tests; I want a copy of the results." Hard to argue with the logic on that, and the law agrees in most (and perhaps all) states.
Okay, that's my entire download -- others here have much to contribute and say, and it's a great group. Welcome!
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