Lyme Testing Bands: Same w/ Quest as with IGeneX? & Update..

[Conniel7777]

Hi All,

 Well, Just had my latest visit w/ Dr. W.

The good news is, he thinks I am doing “Great”…  However he did increase my mino dosage up to the 100 mg twice a day ( FINALLY! its took him 14 months! ) because I am starting to feel a bit of the fatigue come back, and although my SED rate had dropped from 76 to 52 since I began AP, its holding steady at 52, and he wants it to go down more. ( btw.. Dr. W also said I am slightly anemic.. could this be the cause of the slight increase in fatigue? I dont know.. )

But.. to the topic of this post….

He ordered LOTS of Lyme testing for me, but all of it thru Quest, as he has zero faith / trust in IGeneX. ( he says everyone who tests thru them comes back positive )

He ordered Western Blot, Elisa and PCR & DNA testing on both my blood AND urine. ALL tests came back “Non Reactive”.

Here are the “Bands” that Quest tested:

IGG:

18 KD

23 KD

28 KD

30 KD

39 KD

41 KD

45 KD

58 KD

66 KD

93 KD

IGM:

23 KD

39 KD

41 KD

Of course, after seeing these results, Dr. W is confident that I dont have Lyme, and if I ever did, that the “Mino killed any remaining critters” ( his words exactly )

Needless to say, I will still be seeing a LLMD in December right before Christmas, as I know that Lyme is treated based on a clinical dx, not on bloodwork..  AND.. when you pull up a list of Lyme symptoms compiled by Dr. Burrascano, I have 99.9% of them, sooooo… I am still convinced I have Lyme. ( and I am SURE the LLMD I will be seeing will want me to have the IGeneX testing anyway )

But.. the question still remains: you can see the “Bands” that were tested above by Quest… for example, band 41… doesnt IGeneX also test for band 41? ( I ask this b/c I always hear that IGENEX tests for bands that labs like Quest dont test for ) so is Quests band 41 the same as IGENEX's band 41?

Basically, bottom line: my question is this: can I rely on this Quest test AT ALL??? Western Blot, Elisa, PCR & DNA of both blood an urine…   any input?

 

[Suzanne]

The way it was explained to me by a dr. who did not put a lot faith in an Igenex test – “some labs are too sticky”.

So to that dr., Quest's test of band 41 would not pick anything up, but Igenex's would. 

You have to decide if the 'stickiness' is good –  they are more precise and are able to find it, or bad – they pick up too much that doesn't mean anything.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[nspiker]

Hi Connie,

I don't think you can dismiss lyme based on these tests.  All tests, including Igenex, are historically inaccurate.  Igenex is the most respected of all the tests because of the sensitivity in the bands to detect exposure to the different facets of lyme.

( he says everyone who tests thru them comes back positive)

I tested IgG and IgM negative through Igenex, so that blows that theory.  I was also tested five different times over the years for lyme, and it was always negative through labcorp or quest.

I think you're on the right track.  If your symptoms match Dr. B's guidelines, than you most likely would be clinically diagnosed.  You mentioned you are slightly anemic, which is common with babesia, a co-infection.  Taking 100 mg. of minocin a day can keep your inflammation down, and can be extremely beneficial, but it not's a high enough dose to kill lyme.  Minocin has to be taken at higher doses (200mg. to 400 mg.) to be bactericidal and to cross the blood brain barrier.

nancy

[Cheryl V]

Yes, those are the primary bands, but were you able to get the results of the bands tested? When my daughter was tested through Quest, the only band that showed positive was band 41 which is what prompted us to get the IgeneX test.

Her test results from IgeneX actually came back negative, but she showed enough IND on lyme specific bands that three doctors determined it was Lyme.

Hope this helps!

Cheryl

 

[hopefulmama]

Hi Connie,

I can relate to your experience because my AP rheumatologist – who I really admire – also told me to dismiss my IgeneX results.  (My Quest testing was non-reactive for all bands, twice… IgeneX was positive for 4 lyme specific bands on Western Blot.)  However, I did not do so, because at the end of the day, I had almost every single lyme symptom on any lyme checklist I could find.  I figured it was better to embark on a treatment and see what happened, rather than continuing to live feeling awful and foggy – and having so many MDs offer to give me antidepressants because they couldn't come up for an explanation for my symptoms. 

I am seeing a well respected LLMD/ND (naturopathic doctor) and I have to say that I am already noticing positive changes based on the protocol I have been on for 3 weeks.  They are small changes.  However, just knowing that I am actively doing something to improve my health makes me feel better and more positive.

I honestly view my lyme doctor as a “balance” doctor.  She is helping me to get my body back into balance – and frankly, who cares how it got that way.  I have tested positive twice (via Labcorp) for active mycoplasma infection, my hormones are off, my adrenals aren't functioning normally, I have Hashimoto's – you name it.  Plenty of “traditional lab” bloodwork to show that my body isn't happy with something.  I believe that following up with the lyme by taking appropriate antimicrobials, balancing out the hormones, healing my gut with probiotics, cutting out gluten and if necessary taking antifungals… all of this is just getting my body back into balance. 

So many people have told me in the past week how much better I am looking, and I don't even need this wonderful validation because overall, I have more energy and I can think more clearly.  I am less depressed.  Something is really helping me.

Thanks to all of the last 3 months, I no longer believe in autoimmune disease or even cancer.  (I was checking out the studies last night on PubMed showing a proven causal relationship between bacteria/viruses and cancer… there is so much evidence out there.)  At this point, I simply believe that we are exposed to bacteria, protozoa, viruses and environmental toxins – which combined with poor diet, lack of sleep and stress, create illnesses that we have classified into different categories and given names like “Alzheimer's” or “Scleroderma”.  I think the main thing is to be proactive in getting your body back into balance. 

The great thing about Lyme doctors, is that they really do look at you holistically.  My LLMDs are the only people who look at me and don't think it is crazy or tragic that I have thyroid, adrenal, bladder and vulvadynia problems, along with disc hernations.  They nod their heads and say, “Yep, all of that is typical lyme and babesia.”  For them, I'm just a run-of-the-mill patient.  I can't tell you how good that feels, to be viewed as simply a normal person who has contracted lyme and possibly co-infections.

I hope any of that helps!  Best wishes to you… and if you think you have lyme, it is probably worth pursuing.  I know I am very glad that I did.

[lynnie_sydney]

[user=1552]nspiker[/user] wrote:

You mentioned you are slightly anemic, which is common with babesia, a co-infection. 

Nancy anmd all – 'unexplained anemia' is common in ALL rheumotoid disease – this is covered in Dr Brown's work – see pages 144 and 159 of the Scammell book. Lynnie

 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[PhilC]

[user=1441]Conniel7777[/user] wrote:

He ordered Western Blot, Elisa and PCR & DNA testing on both my blood AND urine. ALL tests came back “Non Reactive”.

Hi Connie,

Did you stop taking antibiotics for awhile before the testing was done? If not, the PCR testing was probably a waste, and possibly the same for the DNA testing as well. Also, I read that PCR is not an easy test and is best done by a lab that has a lot of experience with that technique.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Valsmum]

I called igenex today and they told me to make sure there is 10 days without antibiotics before getting tested for lyme. I'm getting tested because my knees swell up so badly with just 50 mg twice a week. Alot of the other symptoms fit. I wonder if prednisone will affect the test???,I'm trying to taper ASAP but my knees won't let me.

[Conniel7777]

Valsmum,

Hmm… Thanks for that info. I didnt know this was a requirement. I will advise my LLMD in December that I am on Mino, so he will be aware of it before he draws my blood for the IGENEX test.

Thanks!

[Conniel7777]

Suzanne,

 

 Good explanation.. Thanks!

[Conniel7777]

Nancy,

 Yes.. I have almost ALL of the symptoms. ( I think there is only 1 I dont have, and at this moment I cant even remember what it is )

As I mentioned in my post, my AP doc FINALLY raised me to 200 mg a day of mino, but I know thats not enough to kill Lyme ( or whatever co-infections I may have ) even if he thinks it is.

I love the guy, but hes not a LLMD.

[Conniel7777]

Hopeful Mama,

 

 Wow.. your reply to me was VERY informative.. thanks to your post, I can now add 2 more symptoms to my Lyme & Co-Infections list: Disc problems and Vulvodynia… How wonderful….

Glad you are on the right track.. as of December, I hope to be, too….

Thanks again…

[Conniel7777]

Lynnie,

 

 Thanks for this info.. I didnt realize this.

[Conniel7777]

Cheryl,

 

 No.. I didnt get the “actual” results on each band.. it just said “Non reactive”.

In the end, I guess it will be a clinical dx, no matter what ANY test from any lab says, because I have all of the symptoms….

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