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» LymeNet Flash » Questions and Discussion » Medical Questions » Feedback needed about a challenge to get a positive test--time sensitive

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Author Topic: Feedback needed about a challenge to get a positive test--time sensitive
Rumigirl
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I have been re-testing in order to get a positive, current test for one of the TBD�s, for the purpose of my hematologist rx�ing

Neupagen/Neulastin to keep my WBC�s and absolute neutrophils up, so that I can treat enough to get well.


Yes, I�ve tried all the other remedies for that, and they helped, but weren�t sufficient.

I have been off Bb treatment for a few months now and am really not doing well, so I thought it was a good time to test. However, my recent

WB�s for Bb & Anaplasma came out indeterminate. This is after years and years of one + test after another.

I am doing IVIG, so that may affect the results. Plus, had been on rocephin on and off for quite a while.

I am about to now try PCR testing for Bb & Anaplasma through MDL, in hopes of a + test there. I was going to do another test that further tests

the indeterminate on band 31 of the IgM of Bb through Igenex, but discovered that I can�t do that test from my state (grrrrr!). Plus, I�d have to redo the WB�s from an out of state dr to the tune of $660 total!

I also can�t do the culture test from my state---only if I go to an out of state dr to rx it and draw the blood, which is possible. But that would cost

$725, and probably not reimbursable. Plus, I�m not sure if the results would hold weight in my state----not likely, although maybe.

I�m set to do the testing on Wednesday, as it will be the longest time away from my last IVIG treatment (13 days).

It occurred to me that maybe I need to do some kind of challenge in the next few days to bring the spiro�s out of hiding, ie, tinidazole,

flagyl, or something. Any feedback?
(I am finding it next to impossible to get my dr�s office, and definitely couldn�t get them until Tuesday, so no help there likely).

If no + test, I have to hope for the best in terms of trying to get my current doc, or another doc, to treat me aggressively enough, in spite of

the WBC�s & ANC going lower than they already are. So far, my doc has only been treating me really

conservatively since this issue came up last June, so conservatively that I will never get well at this rate. Two of my other docs, one a hematologist,

freaked out so much about it, that it freaked him out. Frankly, I think an LLMD should understand this issue, but he doesn�t know enough about it; he suggested that I do a consult with Dr. J in DC about it. Truthfully, I need a new doc, but it's not clear who would be good.

Thank you!

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Summer3
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I am having the same problem regarding retesting. My doctor wanted a retest, but I was already CDC positive. I've been ON heavy orals for almost 2 years.

I don't know what to do in regards to an antibiotic challenge, but I hope you get a positive result so that you can continue treatment more easily.

The first time I tested I was a month off of a short course of low dose doxy and I was fully positive. We'll see how this one turns out. I am on Flagyl and many others and have been long-term.

--------------------
http://www.lymepie.blogspot.com

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GretaM
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I am also doing a Western Blot retest in 7 days. So far for treatment I have had 2 months of 200mg Doxy twice daily. Then that was stopped and I am currently taking 100mg Mino twice per day, 500mg Clarithromycin twice per day and pulsing (1 week on, 1 week off) Tinidazole 250mg twice daily. I asked my doc if I should quit antibiotics to 'challenge' the Western Blot. He said no, it doesn't matter. I will keep you posted with the results from the Western Blot. There is so much conflicting information on WB challenges on the net... I hope that he is right because it is a lot of money to do the retest.
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droid1226
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Doxy and flagyl seemed to bring every infection and virus known out in me when previous tests showed nothing.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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Rumigirl
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I haven't had ANY Lyme treatment in months, which is a horrible mistake. (It wasn't completely on purpose). But in spite of that,

and in spite of having slid back to zero, I only got "indeterminate" on the WB's for Bb & Anaplasma.

I just don't know what to do here. I have had to figure it all out myself, with Igenex's help somewhat, what tests to do for this purpose. But nothing is clear about what tests to do, or if I should do a quick challenge.

If these tests don't come up positive, I either have to try a different test, and wait another month to treat Bb (don't think I

will do that!), or just pray that I can find a dr who will treat me enough in spite of the low WBC's & neutrophils. It's unreal what I'm going through. I have zero quality of life over so many years now.

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MichaelTampa
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Don't know how realistic this is for you, but the idea that pops in my mind for what you're trying to do is some sort of energy treatment, either homeopathic lyme vials or acupuncture or perhaps an Ondamed machine that is targeted at lyme (through vials or other energetic programming), to really get your body fighting much more than it normally would.

I have an MD that can make vials for pretty much anything these days, based on the machine they have. And similarly an acupuncturist that can treat this way, so I know these things are possible. So I'd suggest considering something like that if you have someone who might be able to help you do it. Both Biopure and Deseret Biologics make homeopathic lyme vials (along with coinfections, if desired).

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Judie
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Is there any way to postpone the test?

I took doxycycline for 1 month prior to testing (100mg, 2 times a day). I tested CDC positive through Labcorp after doing that.

I was still taking doxy when I had the test (for me, no need to stop, then I increased to 200mg, 2 times per day after testing).

Some docs have you take doxy for a month, then wait 2 weeks for testing to get the positive result.

Blog by a doctor on a patient converting his test to a positive result:

http://lymemd.blogspot.com/2009/01/lyme-and-cdc-tangled-web.html


"His "Western Blot" for Lyme with a "mill" lab showed a single IgG band in the 58 position....

This patient had a good clinical response to oral antibiotics....

A Lyme Western Blot performed at IgeneX showed positivity at bands: 18,34,39,41. He was CDC and IgeneX positive....

I have found no literature which discusses the issue of Lyme seroconversion. This phenomenon is well known to physicians who treat Lyme disease...."

[ 06-16-2013, 05:25 PM: Message edited by: Judie ]

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n.northernlights
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the patients in Poland say that if they take grapefruit kernel extract before the pcr test (they have a lyme & co. lab), the test is more likely to be positive.
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seibertneurolyme
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I like the idea of flayl or tindamax. I think I would add something to boost the immune system as well -- either astragalus or if it is available low dose LDN. Or if you want to be more conservative some of the adaptogens such as rhodiola, ashwagandha, or Siberian ginseng. One other approach would be to add wobenzyme and/or lumbrokinase.

And if you have not been treating I would expect to get very sick from any of my suggestions if you use even a moderate dose.

As far as getting positive tests -- most of the things I mentioned landed Steve in the ER at least once but he still had zero bands -- never ever got any positive bands except for band 41 on one test once -- no indeterminates either -- everything totally negative except that one test with only one positive band 41. But he did have one positive PCR early on when he was very very sick and also a couple of positive tests for recombinant antigen -- test is no longer available.

If you have the med then maybe a couple of doses of rifampin might trigger some antibody results for the anaplasma test.

Have you ever had your immune complexes tested? It is possible you are producing antibodies that are bound up in immune complexes and not freely floating around in the blood stream to show up on a regular antibody test.

Bea Seibert

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sammy
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I think it may be the high dose IVIG that is preventing you from having a new positive test... so sorry!!!

If I remember correctly, the way high dose IVIG works is by kinda washing away your antibodies and replacing them with donor antibodies at the receptor sites. The donor antibodies can also bind to your antibodies forming complexes.

Obviously it is much more complicated but this is how I remember and understand it from what I've read in the past and you get the idea.

This would explain why your test could come back with less positives after your IVIG dose even though you are still sick.

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Rumigirl
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quote:
Originally posted by sammy:
I think it may be the high dose IVIG that is preventing you from having a new positive test... so sorry!!!

If I remember correctly, the way high dose IVIG works is by kinda washing away your antibodies and replacing them with donor antibodies at the receptor sites. The donor antibodies can also bind to your antibodies forming complexes.

Obviously it is much more complicated but this is how I remember and understand it from what I've read in the past and you get the idea.

This would explain why your test could come back with less positives after your IVIG dose even though you are still sick.

Sadly (in terms of this purpose for needing a + test), I think that you are right. I don't know the mechanisms of exactly how the IVIG works, but I had called the manufacturer of the brand that I take, and asked about the 1/2 life: the 1/2 life is 22-35 days!!!

It is Ig, not IgM, but still . . .

I could try some tinidazole or flagyl, and I do have LDN. But I am supposed to take the test on Wednesday afternoon---really soon! Not much time. Otherwise, I would have to wait another 3 1/2 weeks and put off my abx treatment that much longer----with still likely only a small likelihood of getting a + test this time. Not sure what to do. I guess I'll try a few doses of tinidazole or flagyl & LDN, and take the test this Wednesday.

I'm so darned tired of having to figure every blasted thing out for myself, and having to do ALL the work of pushing everything forward myself. Not sure why I pay my doc so much really---what for?? I'm discouraged.

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seibertneurolyme
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Rumigirl,

To confuse you further I was reading another babesia journal article tonight that said a babesia infection can cause the formation of immune complexes.

So sorry you are having so many issues. I can totally relate to your frustration with testing limitations.

Bea Seibert

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Rumigirl
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Thank you, Bea.

Oh, and I just remembered, the manufacturer of the brand of IVIG that I take said that about 2% of it is IgM. So, given that, given the high, frequent dose of IgG, and the very long 1/2 life . . .

It has been helping though with not coming down with other severe infections since I started it, with energy (at least right afterwards, maybe altogether), and most of all, it is slowly rebuilding my poor ravaged peripheral nerves. It is long and slow though.

I used to have no reflexes whatsoever, no matter how long and hard the drs banged away at them---ever since I was a child (I have had this in retrospect from either in utero or at least early childhood with uncountable known tick bites). Now, I have a few reflexes here and there.

But I digress, that doesn't solve the problem at hand.

Oh, and maybe I could add some rifampin?? Then, I'd really be ready for either the ER or the loony bin---or both!! Truthfully, I avoid the useless ER at all costs. They have failed me miserably way too many times to count.

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Rumigirl
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Here is some of what I found, which confirms what sammy and Bea have said (it's long and technical!):

"Mechanism of action:

The precise mechanism by which IVIG suppresses harmful inflammation has not been definitively established but is believed to involve the inhibitory Fc receptor.

However, the actual primary target(s) of IVIG in autoimmune disease are still unclear. IVIG may work via a multi-step model where the injected IVIG first forms a type of immune complex in the patient.

Once these immune complexes are formed, they interact with activating Fc receptors on dendritic cells which then mediate anti-inflammatory effects helping to reduce the severity of the autoimmune disease or inflammatory state.

Additionally, the donor antibody may bind directly with the abnormal host antibody, stimulating its removal. Alternatively, the massive quantity of antibody may stimulate the host's complement system, leading to enhanced removal of all antibodies, including the harmful ones.

IVIG also blocks the antibody receptors on immune cells (macrophages), leading to decreased damage by these cells, or regulation of macrophage phagocytosis.

IVIG may also regulate the immune response by reacting with a number of membrane receptors on T cells, B cells, and monocytes that are pertinent to autoreactivity and induction of tolerance to self."

Arghhh, it's good for what it does, and bad for getting accurate test results in order to get this treatment.

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Rumigirl
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Well, it was all for naught. ALL my tests came out either equivocal (WB's) or negative (PCR's). This is clearly due to the IVIG in my system---which is IgG from thousands of donors!!

No, neither myself, nor my dr believes this is my true status. But for the purpose of getting my needed treatment (not abx) rx'd and authorized---no good!

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GretaM
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I had my blood drawn on Monday for a challenge western blot. I will post the results of the 'before' and 'after' when the results come in.
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GretaM
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RumiGirl- I am sorry to hear that your results weren't positive. I can sympathize with you on the frustration of getting treatment when one can't 'prove' it. I understand Lyme is a clinical diagnosis, and the not-so-efficient tests available for lyme don't do the sufferers and ill folks justice, but it would still be nice to have a paper of some type of 'proof' to present to naysayers, insurance companies, employers and the like.
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