I got my Lyme Disease test back from Igenex

[JBJBJB]

I just got the message from my doc's office, telling me the Lyme Disease test was negative. At least I get this one ruled out. Now I need to find out what causes my swelling fingers and painful joints. I still believe it is due to some colitis arthritis. Now my next step is to find a doctor who can test me on colitis problems….

I am getting very anxious now.

JB

 

[Parisa]

Well, gluten free makes a big difference for some.  And yes there are some good gluten free pastas.

[lynnie_sydney]

JB hi! I think you need a copy of those results. I understand that it is easy to misread them. Kim and Maz will be able to tell you more about this. Lynnie

For starters have a look at Kim's post on this thread and the link she provides…….but you'll need a copy of your results. http://www.rbfbb.org/view_topic.php?id=3217&forum_id=1&highlight=reading+igenex

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)

[Kim]

Yes JB, do get a copy of the results.  A pos/neg summary can be meaningless if you hit on any of the Lyme-specific bands.

Take care……kim

[JBJBJB]

Yes, the nurse said she was sending it my way. I will be able to get it hopefully on Monday. I will let yall know.

[JBJBJB]

Parisa,

I may give it a try. I definitely have something related with guts.

[JBJBJB]

CDC/NYS              Negative
Lyme IgM Western Blot

         18  KDa.        (-)

         22  KDa.        (-)

**23-25 KDa.         (-)

         28 KDa.         (-)

         30  KDa.        (-)

    ** 31 KDa.         (-)

    ** 34 KDa.         (-)

    **39  KDa.         (-)

    **41  KDa.         (-)

        45  KDa.         (-)

        58 KDa.          (-)

        66 KDa.          (-)

       73  KDa.          (-)

**83-93 KDa.        (-)

It is said “By IGenex Criteria, IgM WB is considered positive if two or more of the double starred bands below are present.”  “The IgM WB is reported positive if 2 of the following bands are present: 23-25, 39, 41 KDa. ”  “The IgM WB is negative if less than 2 bands are present. “

Kim,

The above is what I got. Please make your comment!

JB

 

 

[JBJBJB]

Kim,

Here is the site I read http://www.lymenet.de/labtests/brenner.htm

“The IgM criteria were determined in much the same fashion (by different authors in different papers). Fewer bands are required here because the immune response is less mature at this point. Several studies have shown that

1. the first band to show up on a Lyme disease patient's IgM blot is usually the one at 41 kDa, [/*:1vpnjaoi]
2. followed by the OspC band and/or the one at 39. “[/*:1vpnjaoi]

Kim, do you think I need more test?  What I am really confused about is this “negative” thing. What does this negative mean? The next post talked about if only “one positive”…… however I don't have any positive results.

Thanks for your time,

JB

 

[JBJBJB]

Here, I found a link which is very helpful to explain something related to this test.

Below is directly retrived from this link: http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=15

_{^{“MEANING OF IGENEX TEST:}}

The following is a breakdown of the Western blot only. As co-infections will show their own titers. IgM is a sign of a current infection. IgG can be a sign of a current infection if symptomatic, or of a past exposure to or past infection by the organism. If negative, remember no LD test is 100% reliable, LD is a clinical diagnosis.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`
_{^{PLEASE BE AWARE MANY LLMD'S CONSIDER A BAND THAT IS 'IND' AS POSITIVE, IGENEX TEST READS 'IND's' ARE SIGNIFICANT AND DOES NOT INDICATE A NEGATIVE.}}

IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses. _{^{If ONLY band 31 is positive and no other specific bands are positive, it is recommended to have tests #488 and #489 31 kDa epitope Igm/Igg to make sure borrelia hasn't crossed reacted with several possible viruses….but AGAIN ONLY IF BAND 31 ALONE is positive.}}

There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93. Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease. (More info pages 12 & 13 “Western Blot Made Easy”: http://www.publichealthalert.org/pdfnew/2007_06.pdf
_{^{~~~~~~~~~~~~~~~~~~~~~~~}}

_{^{Igenex Western Blot Break Down by band}}
9 cross-reactive for Borrellia
12 specific for Bb
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme – see link above)
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain – Has cross-reactivity with several different types of viruses
31 outer surface protein A (OspA), specific for Bb – Has cross-reactivity with several different types of viruses
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas – see link above “Western Blot Made Easy” for more info)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]
“

[Kim]

JB,

That's about the cleanest Lyme test I've ever seen, sending you back to square one.  How frustrating this must be for you.  The lab saw nothing leading in that direction.

Hopefully, one of our good people will have some suggestions as to what you might do next.

Take care…..kim

[JBJBJB]

Kim,

Actually I am not frustrated. It's a good news I don't have the Lyme Disease. At least I get that ruled out.

I know minocyclin has not been working well for me. I also know I have very high IgG. In addition, I am fighting with severe allergy reaction to something in my new house. I have this fatigue, rashes on my arm(on/off), sinus problem (post nasal), cough, inflamed eye, perhaps brain…. swelling hands and feet, muscle and joints pain, blue skin (very dark skin color), occasionally rib area pain…..raynauds,  thyroid…I can't walk too long these days. 

My next plan is to get Celiac Disease rule out. Last night I read up Biotoxin (see my post), and many things described there are what I have. That may tell me something…

It's frustrating not knowing what I have.

Thanks, Kim!!!

JB

[carries]

Hi! Does anyone know if i have to stop abx before i do the igenex lab test for lyme….boy i hope not!

[Maz]

[user=266]JBJBJB[/user] wrote:

Lyme IgM Western Blot

JB, I may have missed something when I scanned your posts, but just a quick question…did they also give you copies of the results of your IgG Western Blot?  Seems strange that you only have results for half the test.

IgM represents current or recent infection….IgG represents past infection.

Don't want to throw a spanner in the works here, JB, but I spoke with a woman who also found her IGeneX WB was completely negative, but her coinfection panel came up highly positive for babesia. What this meant was that she was infected by a tick at some stage and that her AP (she had been on it for about 17 or 18 years with Dr S in Ida Grove) had clearly brought it into remission, but that she never treated her babesia adequately. This lady had a classic Lyme rash that appeared just a few months before her RA started in the early 90s that her doc dismissed, so it's clear she had Lyme all those years before and that low dose AP had quieted it, but the intermittant IV clindy hadn't touched the babesia. Last we spoke, this lady was doing really well….once she received babesia treatment, her relapse went into remission.

Of course, not saying you have Lyme, JB, as I really don't know. What does seem clear for some folk, however, is that ticks pass more than just Lyme and also that Lyme is so immunosuppressive that some people take years to test positive on any bands, if at all.

So what may be relevant here is checking to see what your WB IgG is saying (as that appears to be missing above) and then decide if it's worth it to you to have the IGeneX coinfection panel run. The reason why most people only have the WB IgM and IgG run is that Lyme docs will automatically treat coinfections if a WB is positive, so it's pointless paying out for the coinfection tests. If the WB (both IgM and IgG) is negative, however, it's sometimes helpful to run the coinfections panel, because it is possible to be infected with associated tickborne coinfection and not Lyme, but also for Lyme to be there, but just hidden, if those coinfections show up on testing.

I know…confusing, eh? 😕 I would never want to advise anyone to spend a fortune on out of pocket testing, as I am just a patient, too, so you'd really have to go with your own gut on this one. Just feel it is worth mentioning that sometimes people get the full package of testing through IGeneX and they show up negative on WB, but highly positive on other tickborne infections.

I really hope you get to the bottom of your symptoms, JB. You didn't do well on mino, but can't remember if you have you tried doxy?

Peace, Maz

[JBJBJB]

Maz,

I was also puzzled about the results. I only got one page. It clearly said, see second page. I will call the doc's office. I am sure my IgG is going to be out of this planet. It's been very high. I will post the IgG results tomorrow once I get it.

I fully understand what you are saying. Thanks so much Maz. Never hesitate to tell me anything in your mind.

Sorry I have not been around much. You wonder why. I scheduled to do my final dissertation defense on Dec 1st, but my body could not hold together. I became sick….with a lot of pain and diarrhea. I lost a lot of weight in a short time, so I decided to defend it in Feb next year. I passed my prelim exams and proposal defense. This is the last defense I will do. I will be done with it.

I have not tried doxy but I am doing really well with one medicine which takes care of infection and inflammation of guts. I found it by accident and I've been on it (low dosage) ever since. Funny thing is that it also takes good care of my joint and muscle pain. It is not as hard on stomach as minocyclin.

:JB

 

 

[Maz]

[user=266]JBJBJB[/user] wrote:

I was also puzzled about the results. I only got one page. It clearly said, see second page. I will call the doc's office. I am sure my IgG is going to be out of this planet. It's been very high. I will post the IgG results tomorrow once I get it.

I have not tried doxy but I am doing really well with one medicine which takes care of infection and inflammation of guts. I found it by accident and I've been on it (low dosage) ever since. Funny thing is that it also takes good care of my joint and muscle pain. It is not as hard on stomach as minocyclin.

 

JB, glad I wasn't missing something there….the IgG is really important to get the full picture of the WB, so thought it was kind of odd that you didn't get a copy of that second page with those results. 😕 

The new med sounds like it's helping, JB. Do you mind sharing what it is?

So sorry you had to delay your final doctoral defense till Feb…oh well, at least it is only a few months away now and how you are feeling when you make your defense is so important after all that hard work! You rock, JB! :dude: Well done getting this far with it all. You've jumped thru so many hoops to get to this point…you'll be fine and I believe in you!

Peace, Maz

 

 

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