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Posted by susank (Member # 22150) on :

Sorry - I am sure you are all tired of my questions. Tested 3 times. Results in my sig line. First test had been on 50mg Doxy for my eyes. Second test was Ceftin challenge which added band IGG 39IND. Third test was after Zith challenge where I added bands IGM 23-25IND., 30, and 39IND.
I don't think it was a coincidence that bands showed up after having taken Abx. It is said that viruses, rheumatic and autoimmune diseases
can cause false positives. I know that one does not take Abx for viruses. Some folks find Abx therapy helpful with Rh.diseases. Point:
could taking Abx in any way influence other diseases to appear as bands on a WB??? Hypothetically; ie Ceftin challenge for a person with RD could cause false positives? Zith challenge for person with Sjogren's false positives? One would think that Abx would have no effect on blood/work except for bacteria. TIA thoughts.

[ 07-11-2011, 07:42 PM: Message edited by: susank ]

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by susank:
One would think that Abx would have no effect on blood/work except for bacteria.

-
That's what *I* would think .. but I don't know for sure.

Posted by Razzle (Member # 30398) on :

I don't think it is possible to have positives or IND's on band 39 due to anything other than Lyme...but what do I know? I'm just a lowly peon with no official medical training (though Lyme sure compells one to become educated in a variety of medical issues, in my case including feeding tubes, PICC lines, etc.).

Posted by susank (Member # 22150) on :

FWIW and repeating- I have tested neg for RF, ANA and Sjogren's. I have severe symptoms of Sjogren's. ie dryness. Have tested pos. in the past/years ago for viruses but those titers now appear low. Discovered I have CVID - treating with IVIG has put my long-term elevated WBCc into normal range. I have either Sjogren's or LD - or neither - or both. Desperate for Dx. Trying to figure out with my bloodwork what could mean what. If not LD did/could ABX play a part in positive bands?
Will travel soon to a doctor that is trying to help. Want to have some understanding to prepare. I am so sick - I can hardly think.TIA.

Posted by Lymetoo (Member # 743) on :

A dx of Sjogren's won't help anything if you ask me. ( I have a positive test on that. )

Treating with abx gives you hope for a future, taking steroids does not.

Posted by Razzle (Member # 30398) on :

There are a few Rheumatologists who believe that autoimmune diseases such as RA, Sjogren's, Lupus, Scleroderma, etc., are one manifestation of chronic/persistant intracellular bacterial infections and are using long-term tetracyclines to treat patients - with a measure of success. Roadback.org has more info on this.

Posted by susank (Member # 22150) on :

Razzle - yes have read that. Is what kind of makes me wonder if Abx could cause false pos LD tests. I cannot connect the dots how that could happen. and with non tetracycline drugs.
I have so many bands but not positives on the "specific" bands - only IND's. During a phone conversation in general discussing my results - was told that I need to look elsewhere since I did not seroconvert on the "specific" "hot" bands after Abx challenges. I did actually "convert" a bit - but to what? Has to be something antibiotic sensitive?

Posted by Lymetoo (Member # 743) on :

Did you do one month of Ceftin and one month of Zith....followed by two weeks OFF ABX for the testing??

The deal is ... You will likely GET BETTER on long term abx whether you have specific bands or not.

From the WB explanation:

"When the Lyme borrelia are alive, they are geniuses at avoiding the immune system. They may do things like go inside your white blood cells, and come out enclosed by the cell membrane of your own white blood cells! This may partly explain why antibodies against Borrelia burgdorferi are often not found when patients are tested.

What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system.

That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases.

If a borreliosis Western blot is going to be positive, it is usually the first one that is positive. The second blot is the next most likely to be positive, and so on, until the fifth blot."

Posted by susank (Member # 22150) on :

Yes - one month on - two weeks off. I don't think I felt anything - worse or better or a Herx. I guess I decided I did not have LD after all - and just gave up. No more Abx taken. I don't know if can get any more.
The only thing I can get is low dose Doxy for my eyes - from eye doctor. I had even stopped that - looked today at my bottles to restart and see that one has expired - and the other will expire next week. (I guess I cannot take them now).
So I have to make more doctor appointments - which I just dread. The only thing I have been doing is IVIG every three weeks - low dose of 10g. I feel pretty dreadful - all symptoms worse - but don't think one can Herx on IVIG. It must be doing something though - having lowered my WBCc into normal range for the first time in 15 years. What that means - I have no clue. 15 years ago I was Dx'ed with CFS/EBV and my WBCc has been elevated since then. I got better over the years until 5 years ago when something hit me hard - starting with dry eyes and mouth and extreme sensitivity with my eyes to light/glare. I understand that folks can have LD and show few/no bands. But I show many bands - even while having a compromised immune system - ie subnormal Immunoglobulun G. (total and subclasses - the total has gone into low end of normal range on IVIG FWIW). I understand LD is a clinical Dx - ie the sickest can show the fewest bands. I have something that is causing the pos./IND bands - don't know what it is.

Posted by susank (Member # 22150) on :

PS - "until the fifth blot" - sorry - do not understand.

Posted by Lymetoo (Member # 743) on :

Keep going. I would treat for several months then retest.

That said... TESTING is not the END-ALL.

Posted by Lymetoo (Member # 743) on :

"TF" posted this on another thread today:

-------

I would like to quote from "The Lyme Disease Solution" so that everyone can see what this doctor is actually saying regarding "false positive" lyme tests.

From pages 104-105:

"Most lyme aware doctors use laboratories that report all bands including bands 31 and 34. Studies have shown that the most lyme specific Western Blot "bands" are: 18, 23-25, 31,34,39, and 83-93. Any one of these along with band 41 (which appears early and is specific for all borrelia including lyme), strongly suggests lyme exposure. In my lyme disease treatment experience, I prefer seeing at least a positive band 41 (along with at least one specific band) for me to consider the Western Blot positive. If other specific bands are positive, but not the band 41, it makes me strongly consider this may be a "false positive" Western Blot (caused perhaps by viruses)."

So, what the doc is saying is that he wants to see a positive band 41 plus one other specific band to say it is a positive lyme test.

He says that if your band 41 is NOT positive, the test MAY be a false positive and that this PERHAPS is caused by viruses.

His rationale is that band 41 shows up early in lyme disease exposure and it is specific to all borrelia, including lyme. So, you should always have a positive band 41 if you have been exposed to lyme disease.

I hope this clears up the issue of "false positives" caused by viruses.

Many, many lyme patients have numerous viruses. So, what result did you get on the band 41?

Just look and see if your band 41 is positive. If it is, this possibility is not an issue.

Posted by susank (Member # 22150) on :

Fuzzy brain here. Band 41 has nothing to do with viruses, right? I am pos. on 41 and have had viruses - ie EBV/HHV6. I am going through my results today in regards to EBV - spec. the early antigen. It's hard to understand the results ie >8 etc. I miss the old four-fold ref.ranges. FWIW will ask in regards to viruses - and white cell counts.
Infectious mono one expects elevated WBCc?
What about chronic or reactivated? Where would infectious mono vs EBV years later most likely show on LD WB? IGM vs IGG. TIA.

Posted by Lymetoo (Member # 743) on :

"His rationale is that band 41 shows up early in lyme disease exposure and it is specific to all borrelia, including lyme. So, you should always have a positive band 41 if you have been exposed to lyme disease."

So .. since you have band 41 it likely LYME and not a cross reaction with viruses.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by susank:

Infectious mono one expects elevated WBCc?
What about chronic or reactivated? Where would infectious mono vs EBV years later most likely show on LD WB? IGM vs IGG.

-
I don't THINK the WBC would be elevated by a virus. I wouldn't think so. A high WBC indicates an infection, not a virus.

Why don't you call Dr Harris at Igenex and ask about your second question.

www.igenex.com

Posted by susank (Member # 22150) on :

And one can have both CEBV and LD. Then what?
Million dollar questions I will never have the answers to I guess.

I feel like I did 15 years ago when was tested for EBV and titers high and all markers pointed to Dx of CFS/EBV. But I got better. Now it feels much the same but 100 times worse and now involves dry eyes and mouth. My epitope tests neg. Am reviewing my EBV tests - looks like the early antigen (marker for reactivated?) is sometimes neg and sometimes equivocal. Obviously I am trying process of elimination on what could be making me so sick. Fuzzy brain again - band 41 - anything to do with AI diseases? My numerous bands if not LD - could be from viruses and an AI disease like Sjogren's? But showing up on IGM when symptoms have been present for years?

Posted by Razzle (Member # 30398) on :

It is relatively common in chronic Lyme to have persistant elevated IgM antibodies on WB. In fact, I show way more positives on the IgM than on the IgG (see my sig.), and it is known that I've had Lyme for over 30 yrs.

While it is possible for there to be false positives on one or two bands, I highly doubt that band 41 and all the other bands you have positive would all be false positives. I personally think you have a combination of viral and Lyme (and who knows what other coinfections), and you are over-analyzing this to the point of convincing yourself that Lyme isn't one of the things you're dealing with, when every truely Lyme-Literate MD I know of would have you on treatment for chronic Lyme given your test results.

Not everyone herxes from Lyme treatment, either, so that is not a fail-proof method of determining whether one has Lyme or not.

And having CVID will influence your body's ability to produce enough antibodies to show up on the WB - so this may be why you have IND's instead of +'s on Lyme-specific bands. Lyme is also known to down-regulate the ability of the immune system to create antibodies that are specific to Lyme - so your +'s may be from the viruses or coinfections or other stuff, but the IND's on Lyme-specific bands are way to significant to ignore and treatment is all the more important since you do have CVID.

IvIg boosts your body's ability to recognize and fight infections of all kinds. So yes, IvIg could cause herxing.

The above is just my opinion, I am not a doctor...

Posted by Lymetoo (Member # 743) on :

Many lyme patients have EBV and Lyme .. and usually .. the EBV gets under control just by getting rid of the Lyme.

--

from the WB explanation:

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."

Posted by susank (Member # 22150) on :

Razzle - thanks - and what you have written makes sense. I was thinking there must be an explanation - and you may have provided it. ie why I repeat the "other" bands (+ and ++) but only get IND on the ** bands. ie "LD down regulating immune system....LD specific antibodies". Where might I ask did you get that pearl of information? I would be interested in reading more about that.
Yes, I am rather obsessing. All this is so screwy and hard to understand - particularly with a brain that is not functioning properly.
I was hoping IVIG would do something to make me feel better. I feel worse - maybe it is a herx.
I am stressed because I am so sick - with more questions than answers. One day I am convinced I do not have LD - the next day convince myself that I do. So many complicating factors. Most days I feel like I would rather die than go on like this. The not knowing what is wrong is really getting to me. Thanks.

Posted by Lymetoo (Member # 743) on :

Maybe another way of saying it is that Lyme suppresses the immune system....making it hard for your body to register the antibody response needed for the WB.

If you've had Lyme a long time ( and you probably have ) then your immune system is way down.

That is what happened to me.

I'm not sure I've heard anyone who felt better on IVIG. Maybe I missed that thread!!

Posted by susank (Member # 22150) on :

Thanks. IVIG has been the only treatment available for me. I figured whatever I have it might help knock out something - or help to do so. I have been afraid to take IVIG and ABX at the same time. I have some Abx here at home leftover from previous other infections - and I have something else brewing now so started taking Abx yesterday. With CVID anything can happen. I have doctors appt next week. Thanks all thoughts/help again. JFWIW I might try later to post my EBV results.

Posted by Razzle (Member # 30398) on :

It's a repeated concept in many sources written by Lyme-Literate practitioners and other researchers. So I don't remember the exact source the first time I read it, but I have seen it out there...

Here's my reading list (not comprehensive...I don't have a comprehensive list of all the websites I've read):

Books:

"Cure Unknown," by Pamela Weintraub

"The Lyme Disease Solution," by Kenneth Singleton, MD

"Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections," by Stephen Harrod Buhner (master herbalist)

"Beating Lyme Disease: Living The Good Life in Spite of Lyme," 2nd Ed., by David Jernigan, DC

"Insights into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies," by Connie Strasheim

"The Homeopathic Treatment of Lyme Disease," by Peter Alex

"The Top 10 Lyme Disease Treatments," by Bryan Rosner

"Everything You Need to Know about Lyme Disease and Other Tick-Borne Disorders," by Karen Vanderhoof-Forschner

"Ending Denial - The Lyme Disease Epidemic: A Canadian Public Health Disaster," edited by Helke Ferrie

I also saw the movie, "Under Our Skin," several times, and have read numerous websites. My favorite Lyme websites include:

http://www.LymeNet.org/
http://www.canlyme.com/
http://www.thehumansideoflyme.net/

and probably a few others I'm forgetting about... Oh yeah, and Dr. B's Advanced Topics in Lyme Disease (treatment guidelines from 2008)...

I also have read a number of research articles and other info provided by the well-informed members of this and other excellent Lyme support groups.

Not trying to toot my own horn here, just saying that I really can't pinpoint which of the above sources have info on the immune suppressing nature of Lyme bacteria (and I suspect that most all of them do say something about this sneaky bacteria's immune system effects and evasion tactics).

Posted by susank (Member # 22150) on :

Yes, how many times have I read that LD is a master at avoiding the immune system. It has just not made sense to me how I could be IND on the specific bands and pos. on the others. They are on a LD WB for a reason, right? So they could LD or something else. I had also wondered if Igenex raised the bar/has a stricter/higher criteria that has to be met on the ** bands. The other bands I am pos. on could be LD or something else. For some reason over the years the thought of having Sjogren's has scared me the most. Five years ago when I started getting really really sick and started with the dryness and photophobia - was in ER because I also felt like I was going to die - fever etc - was given fluids - at first the ER said I was dehydrated - but bloodwork said no. They said probably Sjogren's. I researched and it scared me so badly. Three rheumies said they did not think I had SS.

Posted by Razzle (Member # 30398) on :

Lyme is known to trigger symptoms that can mimic a wide range of autoimmune disorders, including the dryness attributed to Sjogren's by non-LLMD's. But it is also possible to have autoimmune disorders in addition to / as a separate issue from Lyme. Some Rheumatologists believe other intracellular bacteria (chronic infections) cause most, if not all, autoimmune connective tissue disorders (Sjogren's, Lupus, RA, Scleroderma, etc.). See roadback.org for more info on this idea...

Posted by susank (Member # 22150) on :

What has also confused me is learning months ago that Igenex only assigns IND on ** bands. The other bands - if in question - are just left blank because - in so many words - "would be pointless" to rate them IND. Thinking about this - I am wondering the sense of it - and what other bands would have shown up as IND. Would it change how I feel about DX??? I cannot wrap my brain around that.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by Razzle:
Lyme is known to trigger symptoms that can mimic a wide range of autoimmune disorders, including the dryness attributed to Sjogren's by non-LLMD's. But it is also possible to have autoimmune disorders in addition to / as a separate issue from Lyme. Some Rheumatologists believe other intracellular bacteria (chronic infections) cause most, if not all, autoimmune connective tissue disorders (Sjogren's, Lupus, RA, Scleroderma, etc.). See roadback.org for more info on this idea...

--

very true! You could easily have both

I see no problem if in fact they only put "IND" on the starred bands... since as you said .. they are the most important.

An IND is a weak positive and in my book a positive is a positive.

Posted by susank (Member # 22150) on :

FWIW - I didn't say "pointless" - I am quoting. (badly - at that...).

Back soon with EBV results.
My HHV6 IGM in range - HHV6 IGG out of range.

Posted by susank (Member # 22150) on :

Latest EBV tests:

(VCA IGM normal past years)
(EBNA high past years - not tested this time)

VCA IGG: (Quest Lab)
>5 High (Pos >=1.10)

Early Antigen D IGG (Quest)
0.99 High (Equivocal 0.91-1.09)

Early Antigen R+D IGG IFA Titer (Focus Lab)
1:160 High (>=1.10 Antibody detected)

Interpretive Criteria on the EA RD above:

"A transient elevation in titer is seen in 85% of acute EBV infections. Although low titers may appear at a later date due to asymtomatic viral reactivation, elevated levels (1:640 or greater) may be related to symptomatic disease due to chronic or reactivated EBV".

Interesting that the EA IGG is marked as high when it is in equivocal range. ??? (How would this compare to Igenex IND???)

Any thoughts on my EBV levels? Would they be considered high or low? Enough to be a factor in how I feel and enough to cross-react on LD WB?). (and if so on IGM or IGG or both?).

Posted by susank (Member # 22150) on :

Found something VERY interesting while researching something else. I don't know how to cut and paste - this is the best I can do:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/65429?

Vermont's post about 3/4 page down - time 4:18.
Quoting (long) article - 5th paragraph:

..."in the case of Bb infections, the human antibody response to the flagellum is much stronger than it it is to 31-34 Kda....".

I don't think I have seen anything like this written/explained before - if is true - and would include the other **Igenex bands. ???

This goes along with my nagging concerns/thoughts as to the ** bands - ie is the "bar set higher" to get a pos. on them.
I have felt there must be reasons - this might be one of them. Thoughts?

The bar is not set higher - there is perhaps a valid reason why these bands are harder to get a positive response on. ???

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by susank:

The bar is not set higher - there is perhaps a valid reason why these bands are harder to get a positive response on. ???

-
Have we established the fact that those starred bands are harder to get a positive on?? I don't see why that would be true.

Posted by susank (Member # 22150) on :

Tutu - did you read the paragraph I referenced?

Could you copy and paste it maybe?

I don't think anyone has really said that the starred bands are harder to test positive on - maybe I am the only one on this tangent - and think that somehow there is that possibility.

The article seems to say that in LD bands 31 and 34 are harder for our bodies to make antibodies to than for band 41. IIRC - I read it an hour ago and cannot even remember that. Outer surface proteins?

Posted by Lymetoo (Member # 743) on :

Is this what you needed??

FROM VERMONT'S POST:

My understanding from this article below, is that because immune system response to borrelia b. often first shows up strongly in Band 41, corresponding to the Bb flagellum, that this band has been proposed by these researchers as the reference band to use for serodiagnosis of lyme disease.

The abstract:

JOURNAL OF CLINICAL MICROBIOLOGY, Feb. 1988,
p338-346 Vol. 26, No. 2
1988, American Society for Microbiology

Measurement of Antibodies to the Borrelia burgdorferi Flagellum Improves Serodiagnosis in Lyme Disease

KLAUS HANSEN,* PETER HINDERSSON, AND NILS STRANDBERG PEDERSEN

Borrelia Laboratory, Department of Treponematoses, Statens Seruminstitut, Amager Boulevard 80,
DK-2300 Copenhagen S, Denmark
Received 8 September 1987/Accepted 3 November 1987

The isolation of Borrelia burgdorferi flagella and an enzyme-linked immunosorbent assay [ELISA] for detection of immunoglobulin G [IgG] and IgM to the B. burgdorferi flagellum are described.

The diagnostic performance of the flagellum ELISA for serodiagnosis of Lyme disease was compared with the performance of a traditional whole cell B. burgdorferi sonic extract ELISA. We examined sera and cerebrospinal fluid [CSF] from 56 patients with lymphocytic meningoradiculitis [Bannwarth's syndrome], the most frequent secondarystage manifestation of Lyme disease in Europe.

Two hundred healthy individuals and patients with aseptic meningitis, encephalitis, Guillain-Barr� syndrome, and syphilis served as controls.

The flagellum ELISA was significantly more sensitive than the sonic extract ELISA. The diagnostic sensitivities were increased from 41.1 to 76.8%
P < 0.01, for IgG and from 35.7 to 67.9%
P < 0.05, for IgM detection in serum.

The increase in sensitivity was most pronounced in patients with a short duration of disease, less than 20 days after onset.

The diagnostic specificity increased for IgG detection but was almost unaltered for IgM. The flagellum ELISA did not improve the diagnostic sensitivity of measuring antibodies to borreliae in CSF, most likely owing to the low
level of unspecific antibodies in CSF compared with serum. The cross-reactivity of sera and CSF from patients with syphilis decreased significantly.

**The flagellum antigen of B. burgdorferi shows no strain variation, is easy to purify in sufficient quantity, and is therefore a suitable reference antigen for routine serodiagnosis of Lyme disease.**

**

Note: although the abstract does not mention Band 41 by its number, just as the "flagellum antigen," the rest of the article makes it clear that the flagellum antigen is Band 41, e.g., further in the article:

The aim of this study was to develop a more sensitive serological assay using a single, Borrelia-specific, immunodominant antigen.

Three observations made us believe that
the B. burgdorferi flagellum might be a suitable candidate:

1. Western [immuno]-blotting [WB] studies with B. burgdorferi showed an early and strong immune response against the 41-kilodalton [kDa] band corresponding to the flagellum;

2. a highly sensitive ELISA has been developed for diagnosis of syphilis which made use of the flagella of Treponema phagedenis as test antigen [22]; and

3. even high-titered sera from patients with Lyme disease reacted only occasionally
and weakly in the T. phagedenis flagellum ELISA.

Posted by Lymetoo (Member # 743) on :

oops .. WRONG ONE ..

VERMONT:

The literature says that the 41 Band also cross reacts with syphilis; other borrelia species; and possibly oral spirochetes.

Although the 41 band cross-reacts (though weaker) with syphilis, the two diseases -- lyme and syphilis -- are otherwise easy to distinguish with testing, so this is not too much of a problem.

41 also cross reacts with other borrelia species; the authors note that since relapsing fever is not prevalent in the NE USA or Europe where lyme is prevalent, that is not so much of a problem either.

Further discussion from the 1998 article:

The early and strong immune response to the spirochetal flagellum shows that the search for a valuable test antigen should not be limited to surface proteins. In the case of B. burgdorferi infections, the human antibody response to the flagellum is much stronger than it is to the 31- to 34-kDa major surface proteins (7, 13, 27).

WB studies have shown that the 41-kDa flagellin band is not completely specific. Sera from healthy controls may react slightly with the B. burgdorferi flagellum, as seen in Fig. 2, 5, and 6. The specificities of these cross-reacting antibodies are unknown. Exposure to oral spirochetes could be an explanation.

Flagella from different Borrelia species are antigenically related [8]. The flagellum ELISA is therefore not expected to improve serological discrimination between patients with relapsing fever and patients with Lyme disease.

However, this is of minor practical importance
because relapsing fever does not occur in Europe and the northeastern United States, where Lyme disease is most prevalent.

The main limitation of the diagnostic specificity of the 41-kDa band is the reactivity with sera from patients with syphilis.

Despite this observation, we found that the flagellum ELISA significantly diminished the cross-reactivity of serum and CSF specimens from syphilis patients.

This is most likely a consequence of the elimination of other crossreacting spirochetal antigens. The exposure of different epitopes of the morphologically intact flagella and the fiagellum protein flagellin may explain the stronger reactivity of syphilis sera with the 41-kDa band in WB compared with the flagellum ELISA.

In any event, the cross-reactivity between Treponema pallidum and B. burgdorferi does not constitute a major problem because patients with syphilis and Lyme disease are easily differentiated clinically and serologically by the nontreponemal syphilis serological tests (24).

The limited number of sera from patients with leptospirosis investigated does not permit any conclusions as to whether the flagellum ELISA is more specific than the sonic extract
ELISA in terms of serological discrimination between Lyme disease and leptospirosis.

***

On a personal note -- after several known tick bites in endemic areas, several bulls eye rashes, all the symptoms, a positive spinal tap AND a great response to abx, I have only ever had band 41 show up positive on blood tests.

All the llmds that I have spoken with have told me that they see many patients with only Band 41 positive. This article helps to explain why. Patients can also be checked, and should be, for syphilis if their blood tests show this flagellum antibody response.

If you have any literature or studies showing the band 41 cross-reacting with 'non-infectious things' please share it here! This is the best of lymenet -- learning about tickborne diseases and how to treat them.

Otherwise, my conclusion from the literature is that flagellum antibodies, in conjunction with history and clinical presentation, is a good indicator.

[ 07-04-2011, 08:30 PM: Message edited by: Lymetoo ]

Posted by susank (Member # 22150) on :

Yes and thanks - I refer to the paragraph starting:

"The early and strong immune response.."

Am I reading it incorrectly - or is it not rather profound? Flagellum vs surface proteins? (which are bands 23-25, 31, 34??).

Might explain my bingo card from Igenex. No ** bands pos. except 41++. Band 18 considered by some to be a flagella fragment - which I also have as ++.

Posted by Lymetoo (Member # 743) on :

yeah, that makes sense

All I wanted to know was "Could I have Lyme?" .. and .. "Could taking antibiotics get me well?"

The answer appears to have been YES to both! [Smile]

Posted by susank (Member # 22150) on :

This is about as interesting and clear as mud - trying to make a chart of my results of three tests.

IGM Bands IGG Bands
18 + - ++ / - - -
23-25 - - IND / - - -
28 + - - / - - -
30 - - + / - - -
34 IND IND - / - - -
39 - - IND / - IND IND
41 + + ++ / ++ ++ ++
58 - - - / ++ + +
66 + + - / - - -

[ 07-05-2011, 09:33 PM: Message edited by: susank ]

Posted by Lymetoo (Member # 743) on :

I really don't see what you're questioning. I've seen tons of patients here get well and they only had one band show up.

Remember, too, that if you've had this awhile, your immune system is going to have trouble registering a good response.

Showing two ++'s is a pretty good response though!

Posted by susank (Member # 22150) on :

I am gearing up for a doctor's appt to discuss the blood tests that I have asked a different doctor to run for me past months - for one. Hoping something points to treatment. Antivirals or antibiotics in addition to IVIG.
Antibiotics would seem to cover more bases - ie autoimmune, bacteria, spirochete.

Posted by TF (Member # 14183) on :

I had very dry eye and very dry mouth, plus very dry mucous membranes in other places too when I was sick with lyme, babs, and bart.

Good lyme treatment got rid of all of this. Lousy lyme treatment didn't.

In April, it was 6 years since I completed my treatment and I am still symptom free, enjoying my life.

So, lyme can and does cause dry mucous membranes in many people.

Like the song says: "All you need is lyme....la la la la la, All you need is lyme, lyme. Lyme is all you need!"

I don't think any lyme doctor is going to dismiss your indefinite/positive bands on the lyme Western Blot as somehow caused by antibiotics and other diseases.

So, hopefully, you will get to a good doctor and treat the lyme and all of these symptoms are going to go away.

I hope it happens speedily for you. And, let us know how it goes when you see the doc.

Posted by ChuckG (Member # 19093) on :

I finally have figured out your IGeneX results except for 2011 IgG band 58.

quote:
Originally posted by susank:
This is about as interesting and clear as mud - trying to make a chart of my results of three tests.

IGM Bands IGG Bands

58 - - - / ++ ++ +

Which indicates that for 58 IgG 2008 and 2010 were ++ and 2011 was +.

But in you signature, edited below, for 2011 IgG there is no band 58 which from the above should be a single +.

quote:
--------------------
Igenex: WB Pos/IND bands:
2008

IGG 41,58
2010 after Ceftin

IGG 39IND.,41,58
2011 after Zith

IGG 39,IND.,41

Your results assuming 2011 IgG 58 is +

code:

	2008	2008	2010	2010	2011	2011
	IgM	IgG	IgM	IgG	IgM	IgG
18	+	-	-	-	++	-
23-25	-	-	-	-	IND	-
28	+	-	-	-	-	-
30	-	-	-	-	+	-
34	IND	-	IND	-	-	-
39	-	-	-	IND	IND	IND
41	+	++	+	++	++	++
58	-	++	-	+	-	+
66	+	-	+	-	-	-

18 probably is a fragment of 41. Amino acid sequences match up. If tis a fragment of 41 then the only value 18 has is when it is IgM + when 41 IgM is negative. Ditto for IgG.

[ 07-06-2011, 09:40 PM: Message edited by: ChuckG ]

Posted by susank (Member # 22150) on :

Chuck - tks. 2011 test IGG had 58+. Will correct my sig line. I made a chart - pen and paper with IGM results one side - IGG the other -it "squnched" together here - did not line up like you were able to do. I found it interesting to see it that way. Do you have a magic button that could line up my results? IGM IGM IGM IGG IGG IGG. ? The visual on looking at the results like that - dunno -just interesting and easier on the eyes - vs my sig line. Tks.

Posted by susank (Member # 22150) on :

IGM neg on band 58 all three tests.

IGG band 58
2008++
2010+
2011+

TF - may I ask what ABX helped the best with your dryness issues?

Thanks for all your kind and helpful replies.
I am just a wreck - physically and emotionally.

Posted by ChuckG (Member # 19093) on :

Susank's IGeneX results:

code:

 	2008	2010	2011	2008	2010	2011
	IgM	IgM	IgM	IgG	IgG	IgG
18	+	-	++	-	-	-
23-25	-	-	IND	-	-	-
28	+	-	-	-	-	-
30	-	-	+	-	-	-
34	IND	IND	-	-	-	-
39	-	-	IND	-	IND	IND
41	+	+	++	++	++	++
58	-	-	-	++	+	+
66	+	+	-	-	-	-

[ 07-06-2011, 09:34 PM: Message edited by: ChuckG ]

Posted by susank (Member # 22150) on :

Thanks Chuck. The results printed like that "stand out" better. To me - at least.
The IGM bands seem to stay "on their side" and IGG on theirs. Exception bands 41 and 39 - FWIW - if that means anything at all. (2010 IGG 58 is +).

Back from doctor and am very sick - feel barely alive. EBV has reactivated - immune system not keeping it in check. I am to continue on IVIG as it has lowered my WBCc which means I am fighting something - most likely bacterial - and am to take antibiotics. One can herx on IVIG as it has antibodies to most bacteria. If I understood/remember things correctly.

Question:
Herxing makes symptoms worse - including making eyes and mouth more dry - and eyes more sensitive to light/glare????

Posted by TF (Member # 14183) on :

What got rid of my dry eye, mouth, etc. was either my lyme treatment (high dose amoxi with flagyl, then flagyl another month along with levaquin for bart) or my babs treatment (Bactrim DS with pulsed artemesinin).

It is very difficult to tell what treatment did it because the symptoms went away so gradually over a period of time that you can't be sure.

I was treated for lyme and then bart, both in a 2 month time period. Then, nearly a year for babesiosis.

If I were to guess, I would guess it was the lyme treatment--amoxi with flagyl. But, I could certainly be wrong about that.

Just to let you know that amoxi alone definitely did not get rid of the dry eye, etc. I took amoxi alone for 2 years and the dryness never improved on that monotherapy. And, on amoxi alone the lyme only improved to a certain degree.

Posted by susank (Member # 22150) on :

TF - thanks - have been too exhausted to reply.

CD57 HNK1 result: 36 - (year ago was 75).
ANA and RF normal. (always have been).

I started IVIG after the first CD57 test FWIW.

IVIG does not appear to have skewed test results.
My CD 57 is lower - now subnormal -out of range.. wondering what to make of this. (Could having an UTI effect the results?). Sorry my dumb questions. I am so sick...