PET/CT Scan and Lyme

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PET/CT Scan and Lyme

Post by LHCTom » Fri 8 Jan 2016 15:26

I arranged a full body FDG PET/CT scan because it able to identify "unusual" cells or groups of cells due to things like Cancer and Infection/autoimmune processes. An FDG PET scan is able to measure the rate of glucose uptake of cells. Glucose is the most basic fuel used by every cell. But different types of cells use glucose at different rates based on their cellular needs. A cancer cell uses far more glucose than a typical human cell. That is why its used for Cancer tumor monitoring because the tumor cells use far more glucose than the human cells nearby. That causes the PET to show the tumor "glowing" and stands out on the scan. The CT portion is used for registration so the location of the PET abnormaility can be accurately located. That's because the CT shows structure while the PET itself does not. But together one gets a picture in 3D in color of these "unusual cell" clusters pinpointed quite accurately by the CT registration.

But infections or autoimmune processes result in groups of cells due the actual infection or immune response "residue" left on the battlefield. Chronic infections in particular often leave the immune system "residue" of the battle in the Lymph nodes. The type and character of the immune white cells ( T, B, NK, Eosinophils, Neutrophils, Basophils, Macrophages etc..) that have collected in the Lymph nodes gives some indication as to the type of infection that may have caused them. Normally the Lymph node is cleaned out and they do not collect. But for a chronic infection, they can accumulate into a granuloma and their location in the body gives some idea of where the infection has been.

My PET/CT showed many Lymph node granulaomas, seemingly clustered in my torso. So my results came back and sure enough the results were positive for Lymph node granulomas. That's Lymph node "growths". Could be an immune process or Lymphoma. I had a biopsy and the results were not cancer but as suspected, they were granulomas associated with an infection or autoimmune process. Confirmation. The pathology report called it Reactive Florid Follicular Hyperplasia. That term is very general but is indicative of a chronic infection or autoimmune process of some kind. The actual language used by the pathologist gives a little more insight. That is as far as I've gotten but I thought the pathology report was interesting enough to share.
Histologic sections show lymphoid tissue with anthracotic pigment and florid follicular hyperplasia, including large and irregularly shaped follicles; but no abnormal or atypical lymphocytes are seen. A comprehensive immunohistochemical panel shows reactive B and T cell features, as well as follicular hyperplasia, and is without aberrant staining patterns. The features are suggestive, but not limited to several etiologies including infectious processes such as viral and spirochetal (less likely) and possible autoimmune disorders. In the context of the clinical presentation and symptoms, correlation with appropriate serologic and ancillary microbiologic studies is recommended.

An EBER stain is pending and any additional results will be issued
in an addendum report.
It says they found a group of normal B and T cells in my Lymph node follicles that were accumulating and not being flushed out. This suggests my immune system was so active with an infection process that B and T cells were accumulating in these Lymph nodes and beginning to calcify. You might note the fairly casual list of possibilities that includes some kind of viral, spirochetal or autoimmune driven immune reaction. Its both sad and humorous that they felt they must list spirochetal but added the "less likely" qualifier seems to indicate even pathologist are biased. The IDSA reaches deep. Nobody wants to admit Lyme can be chronic. I've been tested for syphilis 3 times negative. I'm also negative for CMV, EBV, HSV-1 etc... So no obvious viral source.

There are other possibilities like bartonella which I could have caught from my 1/2 feral kitten I had when I noticed I was first ill. So its not specific. But so far, I've not been able to convince ANY mainstream doctor I had a chronic infection let alone Lyme. Now they all believe I have a chronic infection. Praise the Lord! This is evidence they CANNOT ignore. That one of the reasons I'm sharing it. It sucks when your mainstream PCP and other non-ID specialists think its all in your mind. But they are important because any chronic infection can cause a myriad of complications and if your PCP doesn't believe you have a chronic infection, the context for complications is a mess which just carries forward to other non-ID specialists. That is one reason this was good. Now they all believe. Maybe not in Lyme, but my PCP actually wondered now if I was right all along. Many of you might have had a similar experiences but never had this kind of evidence that was irrefutable to even the mainstream. A biopsy is very real.

One of my many symptoms is night arthritic pain that slowly goes away in the morning and repeats and migrates from sets of joints in my legs to hips to back to shoulders to arms. This is suggestive a reactive arthritis which is consistent with the PET/CT/Biopsy report. I've discovered that both prednisone and the antibiotic Bactrim seem to be the only things that push that into remission. But it returns in another location some time later. The Bactrim caued remission is interesting. I've included a list of infection types that are believed to cause this kind of reactive arthritis. Its an interesting list and both Lyme and Bartonella are on the list. So is Mycoplasma Pn for which I'm also IgG positive.

So Lyme is at the top of the overall differential list but there are other possibilities. Thought I would share that for people who are frustrated with "testing" and disbelieving mainstream doctors and wanted another way to determine if there is some sort of infection ( or autoimmune) problem they would believe. The PET/CT is expensive at $2100 and there is no way insurance will approve it in most cases. But maybe. Thought others might find my lates line of investigation interesting. I've never heard of using a PET/CT for Lyme detection but maybe its because I've never thought to look.

Example discussion of using PET/CT in ICU for infection detection.

PET/CT is typically too expensive for diagnostic workup except in this ICU life or death setting but can be quite effective. At $2100, it doesn't take too many IGenex, ALS or other Lyme workups to add up to $2100. But the mainstream rejects IGenex and ALS results while a biopsy based on a PET/CT scan detection provides near 100% evidence of an infection process. That in turn can led to a more thorough diagnostic effort since the infection process is a known fact and if a microbiology/serology workup comes up with nothing, its probably incomplete.

More to come!

The List of Infections associated with Joint arthritis-like pain - i.e. Reactive Arthritis
Infections in joints.JPG
Infections in joints.JPG (55.81 KiB) Viewed 3661 times
Last edited by LHCTom on Mon 11 Jan 2016 21:29, edited 1 time in total.
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Re: PET/CT Scan and Lyme

Post by migs » Fri 8 Jan 2016 22:59

Very interesting. Thanks.

I hadn't thought of that one yet. Where I live, this will cost a lot of money or I can probably have my GP order one and wait for an extremely long time. I am going to look into it.

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Re: PET/CT Scan and Lyme

Post by dlf » Sat 9 Jan 2016 17:52

Thanks for sharing this info LHCTom! It's great that you finally have some physical findings that provide confirmation of infection/autoimmune processes and hopefully this will translate into a better course of action for you.

It would be interesting to know if they tried silver staining on the biopsy tissue, or just the usual methods of staining (which would not identify Borrelia).

There are a few things that you might read in regards to the findings. This one in particular looks intriguing because it also used PET scan technology: It is a copy-written article, but maybe you could get access.

J Infect. 2005 Nov;51(4):e203-6.
Successful antibiotic treatment of Borreliosis associated pseudolymphomatous systemic infiltrates.
Aigelsreiter A1, Pump A, Buchhäusl W, Schönfelder M, Beham-Schmid C, Cerroni L, Bertha G, Dimai HP, Stelzl E, Daghofer E, Wenisch C.
The clinical management of late stage Borreliosis can be difficult due to various associated symptoms and signs and cumbersome microbiological tests. We report a case of successful antibiotic treatment of Borreliosis-associated pseudolymphomatous infiltrates in bone marrow and lymph nodes, which were diagnosed by bone marrow trephine biopsy and positron emission tomography.
The following one relates to cutaneous forms of reactive hyperplasia and pseudolymphoma, but maybe in Lyme patients, because the Borrelia disseminate into lymph nodes fairly quickly the same types of processes are at play, but in non-cutaneous tissue.

Cutaneous Hematopathology
pp 207-230
Date: 14 June 2014
Nodular B-Lymphocyte Reactive Patterns: Reactive Nodular B-Cell Pattern
Phyu P. Aung, Meera Mahalingam ... 9-0950-6_7

This chapter focuses on nodular B-lymphocyte reactive hyperplasia (pseudolymphoma) including classification, historical overview and clarification of nomenclature, epidemiology, clinical and histomorphological features, cytogenetics and molecular features, and clinical course. At the outset, we give an overview of normal B-lymphocyte ontogeny. Entities specifically discussed in-depth include idiopathic lymphocytoma cutis, lymphomatoid drug-induced pseudo B-cell lymphoma, and cutaneous lymphoid hyperplasia secondary to foreign bodies – reaction to tattoo, pseudo B-cell lymphoma secondary to infections, pseudolymphoma at sites of vaccination, persistent nodular arthropod-bite reactions, and nodular scabies. We conclude by discussing mimickers, the significance of clonality and clues to diagnosis. There is no single histopathologic criterion to cutaneous B-cell pseudolymphomas (CBPL) from cutaneous B-cell lymphomas (CBCL). Histologic diagnosis of CBPL depends on two considerations: (1) the architecture of the infiltrate and (2) the composition and cytomorphology of cells in the infiltrate. Histopathologic features that favor CBPL over CBCL include (1) acanthosis, (2) a top-heavy infiltrate, (3) a mixed (T- and B-lymphocyte-rich) infiltrate, (4) absence of mitosis outside of the germinal center and/or necrosis, (5) regular appearing germinal centers, (6) presence of tingible bodies in the germinal centers, (7) lack of cohesion of lymphoid cells, (8) infiltrative border (concave), (9) preservation of adnexal structures with the infiltrate respecting adnexal epithelium, and (10) stromal fibrosis. A useful immunohistochemical feature for distinguishing cutaneous follicle-center cell lymphoma from cutaneous lymphoid hyperplasia is the presence of small clusters of CD10+/Bcl6+ lymphocytes in the interfollicular zones and positive Bcl2 staining in the follicles in the former. Furthermore, there is a low MIB-1 proliferation fraction in lymphoma compared with cutaneous lymphoid hyperplasia.
Because you live in an area where B. Bissettii is highly likely I am also wondering if you have looked at the following article. Again this one is still under copy-write, but in your particular case may be worth a look.

Isolation of live Borrelia burgdorferi sensu lato spirochetes from patients with undefined disorders and symptoms not typical for Lyme borreliosis
N. Rudenko, M. Golovchenko ,M. Vancova, K. Clark, L. Grubhoffer, J.H. Oliver Jr.
Clinical Microbiology and Infection, online first, December 7, 2015.

Last one I am wondering about with regard to accumulation of antibodies that don't clear, this one may be the beginnings of research investigation that might help explain how and/or why the antibodies get produced but don't offer immune protection. I suspect but don't know that if the antibodies can't bind to their target epitopes they might just accumulate. I have copied a section of this below that I think may apply.

J Immunol. 2015 Dec 30. pii: 1501861. [Epub ahead of print]
Epitope-Specific Evolution of Human B Cell Responses to Borrelia burgdorferi VlsE Protein from Early to Late Stages of Lyme Disease.
Jacek E1, Tang KS1, Komorowski L2, Ajamian M1, Probst C2, Stevenson B3, Wormser GP4, Marques AR5, Alaedini A6. ... 01861.long

Although patients with Lyme disease develop a vigorous Ab response to IR6, these Abs cannot bind the intact spirochete, as shown in this and earlier studies, and are therefore unlikely to exert a protective effect (21, 26). This is probably partly because the IR6 region is mostly buried in the membrane-distal region of the protein, with little surface exposure (26). The Ab responses to the membrane proximal domain of VlsE, which develop during later manifestations of B. burgdorferi infection, may be a part of the process of epitope expansion, aimed at exerting greater protective immunity. This epitope expansion may be accentuated in part by the inflammatory environment within host tissue and mediated by IFN-g, which has been shown to be associated with late Lyme disease and to contribute to VlsE recombination (38). Greater reactivity to the membrane-proximal epitopes may also be driven via enhanced Ag processing during later stages of Lyme disease. Although the identified VlsE21 and VlsE336 epitopes are surface exposed, they are located in the membrane-proximal part of the monomeric form of VlsE (26). This may explain why, despite the prominent IgG response to the membrane proximal epitopes in late Lyme disease, the generated Abs cannot bind their respective targets on the intact organism. It is possible that this is another protective mechanism of the spirochete for persistence in the human host.

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Re: PET/CT Scan and Lyme

Post by ChronicLyme19 » Mon 8 Feb 2016 5:17

Oh wow, thanks for sharing. I'll keep this in mind. So with the Lymph node granulaomas, does that mean your lymph nodes are enlarged or that you can feel them? Or is this the type of thing that is too small to detect without a scan?

This kind of reminds me of the UC Davis work about the lymph node architecture breaking down/turning into a traffic jam.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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Re: PET/CT Scan and Lyme

Post by Nirena23 » Wed 4 May 2016 22:42

My doctor happened to mention to me the other day that my tonsils were enormous...they are and have been for awhile sometimes it causes breathing difficulties...could this be evidence of a chronic infection?

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