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My Update + Igenex and Spinal Tap Results

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Posted 8/10/2015 5:38 PM (GMT 0)
So after the long wait I received the results of my spinal tap and Igenex results. If folks recall, I have been dealing with some pretty painful peripheral neuropathy and a host of other symptoms. Saw a neuro at Stonybrook and said I had a spinal tap that was completely normal and that with a clear MRI pretty much ruled out MS. Neuro also said Lyme was highly doubtful as I don't have a trace of antibody in the blood or the CSF. I know spinal fluid is not a great diagnostic tool for Lyme. Then I received my Igenex results from my LLMD. Doesn't help confirm anything unfortunately.

IGM: 41 +, 58 ++ everything else negative so CDC/Igenex IGM negative
IGG: 31+, 39 IND, and 41+++ and all else was negative which is CDC negative and IGenex IND.
Also negative on all coinfections.

Does anyone think this is still likely to be late stage Lyme? It is really hard for me to take the plunge on heavy doses of combo abx when nobody really thinks this is what I am combatting. The diagnosis I got was chronic fatigue which to me doesn't translate. I know this is something a lot of people on this forum wrestle with. I was given some minocycline which could potentially help with general inflammation in the body and told to go heavy on Neurontin and was kind of told to move on by the neurologist. Funny thing is before this I was running marathons and loving life and the last 6 months have just been absolute hell. Love to get some advice or perspectives here.
Posted 8/10/2015 6:10 PM (GMT 0)
It actually does help confirm things.
Band 31 is specific for Lyme. You need to see a LLMD. Stop wasting your time with neurologists.


http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html
Posted 8/10/2015 6:20 PM (GMT 0)
Interesting. Thanks. I would have thought at least Igenex would have then classified it as a positive reading no?
Posted 8/10/2015 7:30 PM (GMT 0)
It says IND indeterminate which means it found something. To qualify as "positive" you have to have two of the specific bands positive, I think. Others can provide more info on this.

http://www.igenex.com/Website/#

 

Posted 8/10/2015 7:39 PM (GMT 0)
What are your symptoms, as this is more accurate dx'ing Lyme and Co vs BW?

That Igenex would be considered positive by any half-way competent LLMD. .

Co-infections testing is even more unrelievable than Lyme testing----Igenex or not.

What does your LLMD say about all of this?

What is your LLMD's plan of action?
Posted 8/10/2015 8:02 PM (GMT 0)
Thanks TBO. Started with peripheral neuropathy and has progressed to fatigue, migrating pain, migraines, swallowing issues when tired, muscle fatigue and burning etc etc. Been going on 6 months now. Wont connect with LLMD until Aug. 19th. LLMD agreed to treat and try different things but I haven't gotten their full opinion since the bloodwork came in. Waiting to hear from them.
Posted 8/10/2015 9:25 PM (GMT 0)
From the Igenex website

IGeneX criteria for positive result is 2 of the following 6 bands: 23-25kDa, 31 kDa (Osp A), the 34 kDa (Osp B), 39 kDa, 41kDa and/or the 83-93 kDa. 31kDa and 34kDa antigens are included to the criteria due to their importance in the recurrent and/or persistent disease period. IGeneX criteria of is 96% specific for exposure to B. burgdorferi.

So your test with bands 31+ and 41+++ is Igenex positive meaning a 96% chance of Lyme exposure. Add to that the Lyme specific 39 ind and the percentage just went up even higher.

Band 31 can cross react with other viruses and they have an additional test to see if it is from a virus or Lyme, but I wouldn't think it is necessary with the ind band 39. Ind means that band reacted but it was less then control test.

http://www.igenex.com/Website/#
Posted 8/10/2015 9:51 PM (GMT 0)
Hmmm - I read the same on the Igenex website. I wonder why the actual report didn't confirm it as a positive reading under the Igenex standards then. Wonder if they have changed something or the reactivity on 1 was too low. In any event, sounds like people think late stage Lyme is definitely a possibility. Keep you all posted on what the LLMD says.
Posted 8/10/2015 10:00 PM (GMT 0)
My husband had 31+ and 41+ and a couple IND so it wasnt Igenex Positive until he did the extra test on band 31 for $100 - it confirmed that 31 was indeed lyme - changed his results to a Positive.
Posted 8/10/2015 10:03 PM (GMT 0)
It actually says on the test result sheet about if only positive on 31 and 41 then extra test needed to confirn.

sorry for brief notes and typos - on my iphone while hubby driving.
Posted 8/10/2015 10:47 PM (GMT 0)
I just noticed the note. I am going to have them run the confirmation test as it is totally worth it. Very helpful Girlie. Sorry to be pesky but did they need a separate blood draw and 3 more weeks for that confirmation do you recall?
Posted 8/10/2015 10:52 PM (GMT 0)
Actually according to the information on this site:www.reocities.com/HotSprings/Oasis/6455/western-blot.txt which has supporting articles, band 31 is Lyme specific, so you have two Lyme specific bands - you have Lyme disease.

Igenex has to keep one foot in the political correctness circle if they don't want to be harassed by the gov't, so they have to not push that it only takes ONE Lyme specific band to prove that a person has Lyme. A Lyme specific band is impossible to have show up positive if you don't have these infections!
Posted 8/10/2015 11:43 PM (GMT 0)
Yeah setting the testing aside, those sx is Lyme. People usually either get joint or Neuro Lyme and sometimes both.

Paired with the Igenex then it is 100% Lyme.


Babesia doesn't really jump out at me aside from the fatigue, but that could be Lyme or Bart as well.

Bartonella i could see based on the fatigue but that could be Lyme or Babesia as well.

Your LLMD should address this as it is very rare to have Lyme and no Co-infections.

Do you have hot/cold flashes, trouble breathing ( like you just cannot get enough air at times), irregular heartbeat, weird rashes or weird stretch-marks?

If you have not already you also need to be tested for EBV and CMV as that tends to go hand in hand with Lyme and could help explain some of your sx as well.
Posted 8/11/2015 12:04 AM (GMT 0)
I am still struggling to figure out why the medical community wouldn't embrace the western blot tests bands on an individual basis. For example, if I picked 5 healthy controls off the street and ran these WB tests, would they also pick up some reactivity, even the 31 band which is specific? Why doesnt the CDC test the 31 band? Or multiple other Igenex bands. It is so maddening. To answer TBO, I have officially confirmed that i have small fiber neuropathy meaning that my axonal nerve density was lower than normal which explains the tingling, burning, shooting pain that literally just caused me to stop typing because my pinky got hit with a shooting zinger, hot/cold spots throughout my body. I don't have trouble breathing or any visible rashes or stretch marks. Its funny though because back in February I recall being on a business trip and woke up in the middle of the night and literally thought I was having a heart attack as I had a warm sensation going down my arm. It was temporary but I am in my late 30's in reasonably good shape so that would have been hard to believe. TBO you just jogged my memory. On EBV and CMV I think we tested those and those were non-reactive. I know very little about EBV aside from the fact that 95% of the population had it but only a very small subset is symptomatic. I thought that was why the neuro (who btw specializes in Lyme) was suggesting I had with the chronic fatigue. Literally told me to go do biofeedback therapy because I had a processing disorder most likely. Why I oughta
Posted 8/11/2015 12:07 AM (GMT 0)
I agree the test isnt necessary - we did it because our LLND wanted us to.
Igenex didnt need another sample sent - and it was ready about two weeks later
Posted 8/11/2015 12:18 AM (GMT 0)
From my research, bands 25, 28, 31, 34, 37, 39, 83, & 93 are all Lyme specific.

This is a massive political struggle and nothing more. The IDSA and CDC do not want to embarrass themselves and say that they have been wrong all of these years.

For more information on this, see these links:
ILADS vs IDSA: www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/


archinte.jamanetwork.com/article.aspx?articleid=226373


www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

And so that you know, Lyme mimics over 300 different conditions, and small fiber neuropathy is definitely one of them. There have been several people that have gotten that diagnosis and have healed these infections and have had that resolve as well. And I've had those symptoms most of my life, yet they resolved with successful Lyme treatments too. Here are a couple of lists some people have come up with on the common misdiagnosis that Lyme patients have gotten, although it obviously doesn't cover all of them, including small fiber neuropathy.

www.nutramedix.ec/ns/science-library/168-300-medical-conditions-related-to-lyme-borreliosis


www.lyme-symptoms.com/LymeMimics.html
Posted 8/11/2015 1:34 AM (GMT 0)
Like what was stated above, very possible that they misdiagnosed it and it is truly Lyme.

All of those sx and the Igenex i still say it is all Lyme.

You Neuro reminds me of a few drs i saw in the past.

Here we have a Neurologist that specializes in Lyme, and he says that it is most likely that you do not have Lyme based on the spinal tap?????????????

Then goes further and says that you have CFS?????????

Then he recommended biofeedback therapy because he thinks that you might have a processing disorder???????

One day in the future i might write a book about Drs that should not be Drs, if i do i will be sure to get this guy's name from you.


So you now have a LLMD, and not seeking treatment through that Neuro? Correct?
Posted 8/11/2015 4:12 AM (GMT 0)
Mysteriousme - if you want the extra test done...you should call Igenex a.s.a.p. - i don't know how long they keep the blood sample.

I'd like to add more, now that I'm on my home computer. I considered my husband's test positive based on the + bands, IND bands, and his symptom history...also, soon after I was diagnosed...and he was listening to me talk about lyme...and I mentioned the bulls - eye rash that I DIDN'T have...he said "Remember that bulls eye rash I had - on my leg...and I took a picture of it...but it's on one of my old cell phones that I don't think I even have anymore." well, I don't remember it...but of course I believe him.

The test was recommended by our LLND...so we decided to go ahead with it.

My test, was Igenex Positive almost one year prior to my husband's test. But, it's interesting that even with a positive test...I still now and then have doubts. I believe this happens because of the lack of recognition/acceptance of the Medical community. Also, add to it the protracted treatment, and the unknowns about - how long, what antibiotic combo to use, etc. It takes months to years sometimes before we are well...and that adds to the 'doubt'.

So, don't bank on the extra test from Igenex making much difference in how you feel about the diagnosis.

You have symptoms consistent with lyme disease, and positive bands for lyme disease.
Time to see the LLMD and listen to what the expert says.
Posted 8/11/2015 4:23 AM (GMT 0)
Yes I am seeing the LLMD next week to discuss although i got an email saying my results were negative. I asked why then the IND on the IGG readout and I haven't received a response yet. Will see. Regardless, need to start treatment. Good news is have been detoxing and started Samento/Banderol a month ago as a first step.
Posted 8/11/2015 4:39 AM (GMT 0)
Is the LLMD saying it's negative? Is that who the email was from?

I don't know why they would bother sending you an email like that...especially since you have an appt. coming up soon....

Yes, that is good you have started the Samento/Banderol. Try not to get to worked up about the Igenex test results...
LLMD's will do a clinical diagnosis - based on symptom history, whether you had a bulls-eye rash, or a known tick bite...and lastly use the test results as a back-up.

Try not to fret too much about it...you need to limit your stress....(I know - easier said, than done) :-)
Posted 8/11/2015 1:04 PM (GMT 0)
A good LLMD should know about lyme specific bands, so your test isn't actually "negative"...I would make sure to ask about Band 31 at your appointment.
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