posted
My LLNP wanted me to get another Western Blot before possibly starting me on IV. My last test was in Sept. 2011 and was positive, with bands 23, 39 and 41 IgM positive.
I had the blood drawn last week at my integrative doc's office. She just called and said it was completely negative, with no bands showing up at all. She was surprised.
So, now I'm puzzled. I mean, it's good that it was negative, but I know that it could be a false negative.
My LLNP was talking about putting me on IV because of my neuro symptoms (depression, memory, word retrieval),headaches and tinnitus. I had already made the decision to get a second opinion on that (after talking about it in support group) because everything below my neck is fine and I'm having a hard time reconciling that I needed IV because of that.
I know I'm still dealing with SOMETHING, though. I know it could still be Lyme. My integrative doc told me last month that my blood tests show I do have a some viral activity going on.
The other LLMD I'll be seeing next week will do complete testing. Maybe I'll get a more complete picture then.
But, as I said, I'm puzzled. If I DON'T have Lyme, what do I have? (rhetorical)
Any thoughts?
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
The western blot is unreliable especially if you have been sick a long time. This should be a clinical decision by your LLMD.
If you are symptomatic, I would not rely on that test.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- You did not need a new test. It's the way insurance companies have to deny treatment. Doctors may be required to have a new positive test before any IV can even be ordered.
And, that's how treatment gets denied.
You had positive tests in Sept. 2011 with symptoms that continue. It can take 3 -5 years to adequately treat lyme, on average and it could take longer.
Sept. 2011 was just about 18 months ago. Still pretty early in the game (still I KNOW that it seems a long time, it's gruelling and it would be nice to see this all better by now, but it's just not they way lyme usually works).
Still, there may be other things to consider along with lyme. Links to come. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- If one had been diagnosed with lyme, they do not need repeat testing. Repeat testing for lyme is not necessary. If diagnosed and not treated adequately or not yet reached remission, it's still lyme.
Now, there may well be other things, especially other TBD to consider but lyme is not just magically going to go away because we get frustrated that it's taking so long.
There is no test that will prove lyme is cleared. That comes from a good strong remission.
Still, it's usually never JUST lyme. And every good LLMD knows that.
The ADVANCE LABS CULTURE test can be of some help futher down the line, though it cannot prove the absence of lyme. No test can. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
I know there is no test that proves Lyme is cleared. I was positive for Lyme in 2011 and I still have some symptoms now. I'm just surprised that there were no positive bands at all.
I'm not saying I don't have Lyme. I know it doesn't just go away.
Also, I was advised by my LLNP to get another Lyme test.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, if the tone was too harsh. Iight have misinterpreted your question:
"If I DON'T have Lyme, what do I have? (rhetorical)" (end quote)
Is this just to satisfy insurance?
The LLNP is probably trying to protect themselves. The powers that put pressure on them are more and more now demanding repeat testing.
But you do not need another lyme test.
(all said in just the right tone of voice to convey appreciation of the position you are in)
I can see, however, that if you were to have that winning lotto ticket it could protect your doctor from the IDSA thugs.
Still, you deserve a doctor with the education, expertise to actually treat you according to their wisdom and not keep trying for tests that are just not going to get you what you need.
Even then, how long before another test is required? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes, it was to satisfy insurance coverage for however long IV would be covered.
The lyme test is done. I guess I'm all set up for clain denial here on out.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- Sadly, now, even if you were to get a positive test, the insurance company will never accept it. Sadly. It's happened time after time.
Had that last test been positive, though, IV would likely have been covered for just under a month at the most with calls for more testing.
And they may not have approved the combination of drugs required but just one.
I'm sorry for this turn of events. It's heartbreaking, I know. I tried and tried for ways to figure out how to get the 9 months of IV my LL ND said I needed.
Possible to get some Rx donated, though the supplies and getting the IV line put in is a major cost, too. I looked to other ways.
Still, please don't despair. There will be other ways to get what you need. Promise. There is always another way.
Rather than more testing, you might consider putting money on a RIFE Machine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- LymeToo's reason for asking which lab is important - for some labs are just so much worse than others.
It would be interesting to know which lab failed you after the positive the last time. But, also do consider all the other variables.
Some insurance companies (Kaiser) go out of their way to use the wrong techniques and also discredit the tests in other ways in the procedure process.
Most labs do not test all the bands, either. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- What DAY of the week was the blood draw? A Thursday or Friday can cause a failed test.
What DATE appears on your test as the lab receiving it and then what date was the test actually done? This matters.
Where was the physical location of testing? Some labs actually ship all over the place and that causes setbacks.
Was the person who did the test actually certified in lyme testing? Not all lab techs who do lyme tests are educated enough to know what they are doing.
Preparation by the drawing lab, shipping methods, too, all matter. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
LabCorp. Drawn on a Wed. I don't know what date appears as the lab receiving it or what date the test was done.
I got the results today, so I'm guessing it was sent right away.
It was LabCorp in 2011, too.
When I was at support group, the leader told me I shouldn't have needed another test. Now I'm hearing that here, too.
I mentioned it here last week before I had it done. Nothing was said about it, so I didn't think anything of testing again. Frankly, I didn't think it would be negative, especially with no bands at all.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
I just lost a little faith in my current provider.
I guess it's good I'm getting a second opinion. It just might be a first appointment, instead.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- Just because the blood draw was on a Wednesday does not mean they performed the test before Friday. It could have waited.
Was it shipped overnight express? If not, you have your answer, partly, in that there may not have been even time for them to do it correctly but
that lab is not one that is to be trusted, anyway.
Unfortunately, when a question is posted here, there is never, ever a gaurantee that it will be answered - and even if you get replies - you may not get all the detail you need.
It's hit or miss sometimes. Or bits and pieces. Generally, the lyme support group leaders and weathered members know what they are talking about. They've been through this.
I'm sorry it's such a rocky road, though. Hold on.
The thing is that now, with the negative test, even if not for IV treatment, you could be denied other treatment for lyme if you were counting on any insurance reimbursement.
With other tick-borne infections in the mix, though, if treatments can overlap (some of the same meds work on various TBDs but not all), you may still be covered so some degree as long as lyme is not listed.
The insurance companies try every which way to deny treatment. Still, other TBD can be of help with coverage. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I will get Igenex testing. I'll make sure it's done at my appointment with the new doc next week.
I know insurance doesn't accept Igenex results, though.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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Keebler
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- Why would you want to get another test?
Even with Igenex, you do not need another lyme test just 18 months after a positive one.
Even with Igenex, the test is still a coin toss.
Save that money for treatment or testing for other TBD. Or for food.
You do not need another lyme test.
It will not help in anyway whatsoever at this point. I know from my own expensive early experience, lots of money down the drain, then only later, learning from many dozens of accounts from others, from the works of many LL authors and speakers at the ILADS conferences . . .
you do not need another lyme test.
(tone: understanding yet wanting to be very clear to help you avoid the pitfalls that many have made before you.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My integrative doc did the test. My LLNP told me I needed to get another Lyme test. She did not give me a lab order. I had to do it on my own. My integrative doc ordered the test and the blood was drawn at her office.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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Lymedin2010
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posted
I think your immune sys is under attack & your body either produces very little or no more antibodies for your infections.
4 of my family members got bit & neither of us got a bulls eye or show positive. We had a band or 2, but we do not test positive.
I did my own microscopy & I cannot believe the amount of bacteria I see floating around in there. The problem is that they are not necessarily in your blood plasma, but most often WITHIN your cells.
Given time, they slowly come out of your Red Blood Cells & even your White Blood Cells. They appear to attack & live safely within your blood cells, where they alter your immune function as well.
Posts: 2087 | From NY | Registered: Oct 2011
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