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wisdom_seeker

IGeneX Lyme/Babesiosis test Qs (babesiosis+ w/o Lyme ?, IVIG?)

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I've read some old threads on IGeneX Lyme Western Blot, so I know that only some bands are specific for Lyme. However in viewing DS's results, I was surprised that IGeneX does not count any indeterminate bands, though many LLMDs seem to. What's the reason for / against?

Can someone help explain whether DS does or does not have Lyme and/or babesiosis?

 

Borrreliosis Western Blot bands:
(I mark in RED the bands IGeneX states are specific for Lyme)

 

18 23-25 28 30 31 34 39 41 45 58 66 83-93

IgM - - - - I - - I - + - I

IgG - - - - - - - + - - + -

 

Babesiosis:

B. microti IFA - IgM Serum 40 (neg < 20)

B. microti IFA - IgG Serum < 40 (neg < 40)

Babesia FISH Whole blood Neg

 

BTW: He had been on Zithro for months, but was off Zithro ~ 6 days @ blood draw).

So, can some of you veterans help me?

  • What does the Western blot mean regarding a Lyme infection?
  • How long do the IgM levels stay elevated?
  • Should I think of him as having Lyme or not?
  • How likely that he would have a co-infection w/o the Lyme itself?
  • If IgM B. Microti is positive, wouldn't he also be positive by FISH?
  • Are LLMDs pretty consistent in how they'd interpret this, or does it depend on the MD?

Thanks.
wisdom-seeker

PS. DS had his first IVIG a month ago, and I need to decide when to repeat. He seems a bit better, though his headache is constant and annoying. And this week his anxiety and intrusive thoughts are off the chart, and he's feeling very off. Still, I don't want to repeat IVIG if we need to treat this stuff first.

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You can call Igenex and ask why they don't factor in Indeterminates into their overall proclamation of results. I think they report on indeterminates because they realize these are meaningful but they may have to use CDC surveillance criteria when making a final result determination. Not sure. But an indeterminate in most LLMDs minds is the same as the band being positive. Something made that band show up, even if the immune response wasn't strong enough to turn it the "right" shade to be called positive.

 

Using this reasoning, your son has 6 Lyme markers - so I'd say you'd be on solid ground arguing there's something there that needs to be treated. Was this test done pre-IVIG? If so, it may be worth repeating 10 weeks post-IVIG - once donor antibodies have disappeared but still while the body's own immune system is still stronger than it was prior to IVIG. This is when my son's Igenex lit up like a christmas tree.

 

I can't speak to the FISH but would say it seems babesia may be worth treating. Yes, you can have a co-infection without having Lyme, especially babesia, which can be contracted from donor blood products, But it's probably more common that when you have a co-infection, you likely also have Lyme.

 

How long IgM stays positive isn't a straight answer. In some chronic infections, I believe it can come and go, depending upon the varying strength of the immune system. It isn't something that is only positive for one period of time and then never becomes positive again. In Lyme, it seems more a measure of whether the immune system is recognizing it at that moment. Could have something to do with the lyme going into cyst form or biofilms and then re-emerging. So if it's positive now, it seems likely there's an active infection that isn't going to go away until treated, even if the IgM were to go away at the next blood draw. Yes, if this were my son, I'd be treating him for lyme, with combo abx.

 

I think there are some pinned threads on the meaning of the western blot. If not, you can google. Each band is measuring an immune response to specific markers.

 

Do all LLMDs interpret the results the same way? No. Lyme is a clinical diagnosis supported by lab results. So it would depend on the LLMDs experience and the patient's presentation/history. But I think most ILADS doctors would be inclined to treat given these results and your previous descriptions of your son's issues, particularly if you've been treating Pandas and not getting the complete results you expected.

 

As to whether to do another IVIG - depends on your son's response and your financial situation. My son reacted so strongly to IVIG that a second probably would've caused too much inflammation/herxing. It isn't common to use multiple IVIGs to treat Lyme. But it's not unheard of. Dr J has patients who see Dr B for periodic IVIGs and the parents seem to feel it's helpful. But I personally found you can get the same result more gently, a little more slowly, with combo abx and herbal supports and anti-inflammatories.

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You can call Igenex and ask why they don't factor in Indeterminates into their overall proclamation of results. I think they report on indeterminates because they realize these are meaningful but they may have to use CDC surveillance criteria when making a final result determination. Not sure. But an indeterminate in most LLMDs minds is the same as the band being positive. Something made that band show up, even if the immune response wasn't strong enough to turn it the "right" shade to be called positive.

 

Using this reasoning, your son has 6 Lyme markers - so I'd say you'd be on solid ground arguing there's something there that needs to be treated. ....

...

I can't speak to the FISH but would say it seems babesia may be worth treating. Yes, you can have a co-infection without having Lyme, especially babesia, which can be contracted from donor blood products, But it's probably more common that when you have a co-infection, you likely also have Lyme.

 

Thanks Llm! Yeah, I too read it as suspicious for Lyme. As far as babesia, the only way I can imagine having the result be IgM+ RNA- is if it is one of these infections that can hide within erythrocytes and only periodically pop out and spill the RNA into the blood. I made an appointment to follow up with his PANDAS / LLMP next week.

 

Oh well. I'd been hoping we could avoid the mess that Lyme is, but also bemoaning that we don't know infection is/was driving the autoinflammation. But it is what it is, and better to know and be able to treat it.

 

PS. I just found the eMedicine.medscape.com article on babesiosis, and they claim that 20% of folks with symptomatic Babesia have Lyme as well, and typically worse symptoms than with either infection alone. So if he has those, I guess he's still comparatively lucky. The only joint issue he has is painful and frequent joint popping, but that isn't new, just much worse than it used to be... and haven't heard of this problem from Lyme.

 

Now to another issue you raised:

 

 

 

Was this test done pre-IVIG? If so, it may be worth repeating 10 weeks post-IVIG - once donor antibodies have disappeared but still while the body's own immune system is still stronger than it was prior to IVIG. This is when my son's Igenex lit up like a christmas tree.

 

Yes, it was, just before IVIG.

 

On the other hand, I'm not surprised that at 10 weeks you son's IgeneX lit up like a christmas tree.

And here's where I turn into a nerd, and for once question your conclusions.

 

The half-life of IgG products is ~35 days. 10 weeks = 70 days = two half-lives ago. So at10 weeks he still had 1/4 of the antibodies pooled from > 1,000 donors!

 

If it were me, and the Lyme/COI treatment were toxic, lengthy and/or expensive, I'd want to repeat IGeneX at both 10 and 15 weeks and compare. At 15 weeks I'd only have 1/8 of the donor antibodies left.

  • If some gMs or IgGs increased from 10 to 15 weeks, I'd think new antibodies are being created to a current infection.
  • If most bands weakened, AND there were no new or stronger bands, then I'd conclude the10-week bands ( maybe even the 15-week bands), were still from the donor immunoglobulins.
  • (The logic is similar to confirming PANDAS via ASO titres: just like you need rising ASO titres of a recent strep infection, I'd think you need two serial titres far enough post-IVIG so a rise wouldn't be obscured by residual donor antibodies)

It's not an academic exercise for me, since my impression is that Lyme/COI treatment IS extensive, expensive, and potentially neurotoxic. My DS had IVIG 5 wks ago so, by my calculations we won't get interpretable IgeneX results without doing these serial follow-up tests... but maybe I'm wrong about the toxicity of the anti-malaria babesia drugs, plus the Lyme treatment? I'd been lulled by previously negative IgG/IgM for Lyme, so this is all new to me.

Edited by wisdom_seeker

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I think you're right to question the 10 week (tho I was told by our IVIG dr the half life was 3 weeks, but regardless, I agree with your reasoning on doing another test 5 weeks later). But my son was in dire straights and the IVIG response was so severe, I could never have imagined waiting an additional 5 weeks to retest and another 1-2 weeks for results. As it was, we had to wait for an appt with an LLMD. Within a few weeks of starting combo abx (opposed to the monotherapy he'd been following for 2.5 yrs), we saw improvements - and unlike previous improvements, these stuck. It was the first time in 2.5 yrs he sustained an improvement. He continued to improve (albeit with herxing and wrinkles like mold in his classroom) with every change up in treatment and was able to become symptom-free and med-free about 3 yrs ago. So in his case, the results at 10 weeks were from his own antibodies and the proof was in the pudding.

 

But if you can stand the delay, then a 10 and 15 week test would probably make you feel like you were on more solid ground. I'd just caution that in my experience, things usually end up being clear as mud and what sounds like a great plan sometimes turns out to lead to more questions than answers. At some point, I always just had to go with my gut and then come up with a different plan if my gut was less than accurate. But I do appreciate your concerns about the babesia meds and taking steps to avoid using them needlessly.

 

The lyme treatments aren't as toxic IMO. You have leeway in various abx and can often use ones that are less toxic (avoid fluroquinolones and gentamycin in terms of side effects and toxicity). Herbal antibiotics as an adjunct therapy is also very helpful and carries far less risk. Herbals are also an alternative for the babesia treatments. Better tolerated and perhaps more systemic. Stephen Buhner's books offer fascinating, geeky, well-researched info on the infections and the herbal options.

 

As for extensive - yes. No quick fixes. 2 yrs for DS. But very worth it for him.

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