Maintaining IgM Antibodies for Years, Poor Prognosis in LD

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
Claudia
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Claudia » Wed 25 Apr 2012 14:42

A case study with

1) a Late Stage Lyme disease patient (possibly infected for 9-10 years)
2) only elevated Bb IgM antibody titers
3) no history of EM rash or joint pain
4) treated with high dose penicillin
5) some symptoms improved (chorea - involuntary movements)
6) autopsy 3 years later showed chronic inflammation along with persistent infection in her brain
The Journal of Nuclear Medicine July 1, 1997 vol. 38 no. 7 1120-1122

Brain Perfusion SPECT in Lyme Neuroborreliosis
Hisashi Sumiya, Katsuji Kobayashi, Chikako Mizukoshi, Tatsuyuki Aoki, Yoshifumi Koshino, Junichi Taki
and Norihisa Tonami

Departments of Nuclear Medicine and Psychiatry, Kanazawa University School of Medicine, Kanazawa, Japan


Lyme disease is a multisystemic disease caused by tick-borne spirochete Borrelia burgdorferi, and its invasion into the central nervous system develops a diversity of neurologic and psychiatric disturbances (1,2).

[snip]

CASE REPORT
A woman, who had been in good health, became aware of unstable walking at 37 yr. She had not experienced any signs or symptoms of skin lesion or joint pain.

[snip]

Further laboratory examination of her serum disclosed an elevated titer of antibody against Borrelia burgdorferi by either Western blotting or enzyme-linked immunosorbent assay (11.8pg/dl), IgM titer was elevated. The review of her past history disclosed that the patient had stayed in an area in Minnesota, where Lyme disease is endemic, for 1 yr when she was 28 yr. She was treated with high dose penicillin that was effective for her choreoathetosis and reduction in her serum titer of Borrelia burgdorferi. She died of acute cardiac failure at the age of 40. Autopsy revealed a chronic inflammatory change in the brain and the presence of silver-impregnated organisms, which confirms the neuropathological diagnosis for LNB.

http://jnm.snmjournals.org/content/38/7/1120.short

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Spanky
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Spanky » Wed 25 Apr 2012 16:00

"Claudia":
1) a Late Stage Lyme disease patient (possibly infected for 9-10 years)
2) only elevated Bb IgM antibody titers
3) no history of EM rash or joint pain
4) treated with high dose penicillin
5) some symptoms improved (chorea - involuntary movements)
6) autopsy 3 years later showed chronic inflammation along with persistent infection in her brain
Okay?

And the point is...?

Are you suggesting that this case, as well as Junior's are exceptional...out of the ordinary or... not?

Do you think this is somehow representative of a typical case?

(Or would you prefer to talk about chocolate cake and migratory birds)? :roll:

Cobwebby
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Joined: Mon 29 Oct 2007 0:55

Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Cobwebby » Thu 26 Apr 2012 7:30

Claudia wrote:A case study with

1) a Late Stage Lyme disease patient (possibly infected for 9-10 years)
2) only elevated Bb IgM antibody titers
3) no history of EM rash or joint pain
4) treated with high dose penicillin
5) some symptoms improved (chorea - involuntary movements)
6) autopsy 3 years later showed chronic inflammation along with persistent infection in her brain
The Journal of Nuclear Medicine July 1, 1997 vol. 38 no. 7 1120-1122

Brain Perfusion SPECT in Lyme Neuroborreliosis
Hisashi Sumiya, Katsuji Kobayashi, Chikako Mizukoshi, Tatsuyuki Aoki, Yoshifumi Koshino, Junichi Taki
and Norihisa Tonami

Departments of Nuclear Medicine and Psychiatry, Kanazawa University School of Medicine, Kanazawa, Japan


Lyme disease is a multisystemic disease caused by tick-borne spirochete Borrelia burgdorferi, and its invasion into the central nervous system develops a diversity of neurologic and psychiatric disturbances (1,2).

[snip]

CASE REPORT
A woman, who had been in good health, became aware of unstable walking at 37 yr. She had not experienced any signs or symptoms of skin lesion or joint pain.

[snip]

Further laboratory examination of her serum disclosed an elevated titer of antibody against Borrelia burgdorferi by either Western blotting or enzyme-linked immunosorbent assay (11.8pg/dl), IgM titer was elevated. The review of her past history disclosed that the patient had stayed in an area in Minnesota, where Lyme disease is endemic, for 1 yr when she was 28 yr. She was treated with high dose penicillin that was effective for her choreoathetosis and reduction in her serum titer of Borrelia burgdorferi. She died of acute cardiac failure at the age of 40. Autopsy revealed a chronic inflammatory change in the brain and the presence of silver-impregnated organisms, which confirms the neuropathological diagnosis for LNB.

http://jnm.snmjournals.org/content/38/7/1120.short

This article is very concerning to me. Having been diagnosed and treated for Lyme Neuroborreliosis. To date I believe all is well. I have designated that I want to be an organ donor-but for the sake of the cause I may investigate how to specifically have a brain autopsy for Lyme Disease.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Claudia
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Location: Connecticut, USA

Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Claudia » Thu 26 Apr 2012 13:29

Tom Grier has an editorial about the need for more autopsy studies on the LNE Information page. This case report from Japan touches upon and illustrates many of the points he makes and issues that are brought up in his article and on this thread.
Chronic Lyme Post-Mortem Study Needed
Editorial by Tom Grier

[snippets]
The Need For A Post-Mortem Lyme Study

The medical community is unevenly divided into two opposing camps on three major issues concerning Lyme Disease:

What constitutes a proper diagnosis of Lyme disease?

What constitutes proper treatment for patients with Lyme disease who have symptoms that persist beyond four weeks of antibiotic therapy?

What role should Lyme tests play in both diagnosis and treatment?
To date, no major multi-center post-mortem Lyme disease study has ever been done on humans. Without this type of post-mortem study, the debate between the two disagreeing camps will almost certainly continue.
To do this type of tissue study of sequestered spirochetal infections takes nearly heroic efforts in time, costs, and diligence. Yet the few times that these types of studies have been applied to humans have suggested that Borrelia burgdorferi can indeed survive and thrive within the human body despite a complete course - or even several courses - of antibiotic therapy.
http://www.lymeneteurope.org/info/chron ... udy-needed
It would also clearly show the presence of any continuing local or generalized immunologic or inflammatory response in the patient to these surviving organisms.

Cobwebby
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Cobwebby » Thu 26 Apr 2012 15:39

Thanks Claudia for pointing me in the right direction-I was looking in LNE's Lyme News.

Tom Grier's editorial makes so much sense.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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Spanky
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Spanky » Thu 26 Apr 2012 16:35

"Cobwebby":
I have designated that I want to be an organ donor-but for the sake of the cause I may investigate how to specifically have a brain autopsy for Lyme Disease.
You've decided to have an autopsy done on the basis of an abstract of some case from Japan that you read online?

Well, all-rightee, then... :shock:

I am confident that they won't find anything.

What "cause" are you talking about?

You know, I find it kind of hard not to burst out laughing when people talk like that.

I was reading a little, the other day, over at LymeNUT...and there was an unusually frank discussion about a certain "LLMD", who was a speaker at the last ILADS conference and appears in 'UOS"...

...and they were saying that he puts '30%' of his patients on iv...and charges them a non-negotiable monthly 'maintenance' fee of $2000.00, A MONTH... costs excluded. That's just for a once a month office visit, apparently.

Is that the "cause" you are talking about?
Last edited by Spanky on Thu 26 Apr 2012 17:54, edited 3 times in total.

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Spanky
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Spanky » Thu 26 Apr 2012 16:55

"Claudia":

Okay?

And the point is...?

Are you suggesting that this case, as well as Junior's are exceptional...out of the ordinary or... not?

Do you think this is somehow representative of a typical case?

Well, since we don't seem to be able to find the time to respond to my questions... :roll:

...it has always been my impression that cases as are being described here are extremely rare...and so, one, I would think...should be careful about trying to extrapolate and infer from the specific particulars of these cases and apply them to the general rule.

And yet, that seems to be precisely what happens in Lymeland and in this particular instance. The poster tries to cast sweeping implications from very rare and individualized facts. And perversely, many patients will insist on the uniqueness of a patient's response to Bb infection...and then take the specifics of that unique repsonse to try to discredit the general rule.
Background and Diagnosis of Late Neurologic Lyme Disease

Late neurologic Lyme disease may present as encephalomyelitis, peripheral neuropathy, or encephalopathy [149–152, 208–212]. Because most patients with Lyme disease are now diagnosed and treated early in the course of infection, these more indolent forms of neurologic Lyme disease are quite rare. Encephalomyelitis is a unifocal or multifocal inflammatory CNS disease [152, 213]. Collectively, only 1 patient with encephalomyelitis has been diagnosed over the past 5 years by panel members (G.P.W., J.J.H., R.B.N., R.J.D., A.C.S., E.D.S., M.S.K., P.J.K., J.S.B., and L.B.), in spite of both community-based and referral clinical practices. This severe neurologic manifestation of Lyme disease has been diagnosed primarily in Europe.
http://cid.oxfordjournals.org/content/4 ... ull#sec-28

Now...

...I guess that I can understand that there may be a substantial emotional 'investment' in talking about specifics of a poster's own case...or those of a close family member.

But I would suggest that doesn't allow general rudeness in response to eminently fair questions, either.

In other words, if you can't handle the emotional consequences, and are going to fly off the handle at people, then maybe you shouldn't post it for discussion in the first place.

Earlier in this thread, for example...I simply doubted whether it was advisable to start suggesting that physicians should be required to test for IgM in late stage based on the rather flimsy and speculative interpretation of what was being discussed here, questioned that, I thought, carefully, politely...and was met with this repsonse:
Spanky, did I miss an announcement here? Have you been anointed pontiff or promoted to cruise director of this thread? Is there a Spanky Peer-Review process in place prior to posting that I am not aware of?
Seems to me that the repsonse was WAY out of proportion to the simple policy issue that was being questioned. No apology was offered. Or since. I would suggest that people be especially careful about using religious imagery when making their 'retorts', as many may consider them particularly offensive.

Cobwebby
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Cobwebby » Fri 27 Apr 2012 5:34

Spanky wrote:"Cobwebby":
I have designated that I want to be an organ donor-but for the sake of the cause I may investigate how to specifically have a brain autopsy for Lyme Disease.
You've decided to have an autopsy done on the basis of an abstract of some case from Japan that you read online?

Well, all-rightee, then... :shock:

I am confident that they won't find anything.

What "cause" are you talking about?

You know, I find it kind of hard not to burst out laughing when people talk like that.

I was reading a little, the other day, over at LymeNUT...and there was an unusually frank discussion about a certain "LLMD", who was a speaker at the last ILADS conference and appears in 'UOS"...

...and they were saying that he puts '30%' of his patients on iv...and charges them a non-negotiable monthly 'maintenance' fee of $2000.00, A MONTH... costs excluded. That's just for a once a month office visit, apparently.

Is that the "cause" you are talking about?
I agree with Tom Grier. "To date, no major multi-center post-mortem Lyme disease study has ever been done on humans. Without this type of post-mortem study, the debate between the two disagreeing camps will almost certainly continue."

I want to contribute to this type of post-mortem study, because without it-well, we won't really know what we're up against.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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Spanky
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Spanky » Fri 27 Apr 2012 17:02

"Cobwebby":
I agree with Tom Grier.
Oh, well...Tom Grier said so. That's different, then... :roll:
Without this type of post-mortem study, the debate between the two disagreeing camps will almost certainly continue."

Nah. The 'debate' will continue as long as 'some people' ignore the evidence... and label it "irrelevant" because they don't happen to care for it...

... and as long as some "LLMD"s are able to charge $2000 for office visits, probably...

Claudia
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Re: Maintaining IgM Antibodies for Years, Poor Prognosis in

Post by Claudia » Mon 30 Apr 2012 16:23

An Understanding of Laboratory Testing for Lyme Disease
Journal of Spirochetal and Tick-borne Diseases—Volume 5, Spring/Summer 1998

A major disagreement with the CDC/ASPHLD group is with its statement that the IgM Western blot should only be used during the first month after tick bite. They have overlooked their own reported excellent specificity of the IgM Western blot. The author's laboratory (35), studies by Steere (28), and by Jam et al (40) point to the importance of the IgM Western blot in recurrent and/or persistent disease. Sivak et al (41) found that the IgM Western blot had a 96% specificity if the patients had at least a 50% probability of having Lyme disease. A study by Oksi et al (42), using culture and PCR to confirm Lyme disease, reported that specific IgM to B. burgdorferi is sometimes the only antibody detected in persistent disease. They felt that this data supported the idea that some Lyme patients have a restricted IgM-only response to B. burgdorferi Lyme disease.

28. Craft JE, Fischer DK, Shimamoto GT, Steere AC. Antigens of Borrelia burgdorferi recognized during Lyme disease: appearance of a new immunoglobulin M response and expansion of the immunoglobulin G response late in the illness. J Clin Invest 1986; 78: 934-939.

40. Jain VK, Hilton E, Maytal J, Dorante G, Ilowite NT, Sood SK. Immunoglobulin M immunoblot for diagnosis of Borrelia burgdorferi infection in patients with acute facial palsy. J Clin Microbiol 1996; 34: 2033-2035.

42. Oski J, Uksila J, Marjamaki M, Mikoskelainen J, Viljanen MK. Antibodies against whole sonicated Borrelia burgdorferi spirochetes, 41 kilodalton flagellin and P39 protein in patients with PCR- or culture-proven late Lyme Borreliosis. J Clin Microbiol 1995; 33: 2260-2264.

http://www.igenex.com/labtest.htm

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