Jesse2233
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My immunologist has recommended a treatment called photopheresis as a way to potentially reset T cells, and decrease proinflammatory cytokines / autoantibodies / chronic pathogens. As far as I can tell this type of treatment has not yet been used in ME/CFS, and is just beginning to be used in autoimmunity.
It has been lightly discussed once before on PR here
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Photopheresis is a process where:
It is most commonly used in certain cancers and organ transplant, although it is becoming more common for autoimmune illness. (1)
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Ideally photopheresis promotes a long lasting "immune reset" or restoration of immune tolerance w/ more permanent effects than plasmapheresis / plasma exchange and without the immunosuppression of treatments such as rituximab, cyclophosphamide, or steroids.
Immune tolerance is explained below
Photopheresis' hypothetical method of action:
I thought the T-cell mechanism of action was especially interesting given Mark Davis' findings, the latest UK study on metabolically impaired white blood cells, and what Dr Chia told me last appointment about Dr Klimas' successful T-cell treatment experiment.
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Note: Photopheresis is distinct from ultraviolet blood irradiation (UBI) which is sometimes prescribed by naturopaths and LLMDS and has been used by some ME/CFS patients with mixed results. UBI does not involve separating white blood cells or treating them with 8-methoxypsoralen. The blood volumes treated in UBI seems to also be less. Sometimes UBI is called photopheresis by naturopaths / LLMDS but it is technically distinct.
That said, the fact that UBI is sometimes effective for ME/CFS and Lyme makes me wonder if photopheresis has even greater potential.
Photopheresis seems to be more firmly under the auspices of mainstream, allopathic medicine and is used by major hospitals and by researcher immunologists / oncologists. UBI seems to be more commonly associated with alternative and integrative medicine perhaps because of its lower cost and requirement for fewer speciality personnel and less expensive equipment.
I understand that PR member @Wayne underwent UBI (it seems it was referred to as photopheresis) with positive effect. Any comments from him or other UBI experienced patients would be much appreciated!
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My concern with photopheresis (and UBI) is the unknown potential for cancer (UV light can cause genetic mutations and 8-methoxypsoralen is a known carcinogen). However I can find no literature linking photopheresis to long term cancer incidence, and it could potentially be preventative of cancer by restoring immune functionality.
It has been lightly discussed once before on PR here
-----------
Photopheresis is a process where:
- Blood is taken from the body via a peripheral catheter
- White blood cells (WBCs) and platelets are separated from whole blood
- WBCs are treated with a photosensitizing agent called 8-methoxypsoralen
- WBCs are subsequently irradiated with ultraviolet wavelengths of light
- The treated WBCs, platelets and whole blood are returned to the patient via a second peripheral catheter
It is most commonly used in certain cancers and organ transplant, although it is becoming more common for autoimmune illness. (1)
-----------
Ideally photopheresis promotes a long lasting "immune reset" or restoration of immune tolerance w/ more permanent effects than plasmapheresis / plasma exchange and without the immunosuppression of treatments such as rituximab, cyclophosphamide, or steroids.
Immune tolerance is explained below
Immune tolerance can be divided into two categories, central and peripheral tolerance.
Central tolerance refers to the T- and B-lymphocyte maturation and selection process that occurs in the thymus and bone marrow, respectively. Immature T cells first undergo positive selection for those T cells that have the capacity to recognize self-major histocompatibility complex (MHC) molecules. Negative selection of T cells by intrathymic deletion is triggered when there is high avidity for self-antigens presented in the context of self-MHC. This process is an important, but not a perfect mechanism for preventing autoreactive T cells from entering into the periphery.
Peripheral tolerance occurs when self-reactive T cells that have escaped central deletion in the thymus are rendered anergic or undergo programmed cell death to prevent autoimmunity. There are three key players that work together to maintain peripheral tolerance: dendritic cells (DC), apoptotic cells and T-regulatory (Treg) cells. DC are a heterogeneous population of professional antigen presenting cells (APC) that have the ability to induce immunity or tolerance under different environmental conditions.
The functional state of DC depends on the maturation status; immature DC promote tolerance by engaging self-reactive T cells in the absence of appropriate co-stimulation and mature DC promote inflammatory responses through expression of co-stimulatory molecules and cytokines. The microenvironment of the DC is very important for determining maturation status. DC maturation is stimulated by factors that are usually associated with infection, inflammation and necrotic cell death. In this environment DC will promote T cell proliferation and differentiation into effector cells that mediate inflammatory responses.
Photopheresis' hypothetical method of action:
Extracorporeal photopheresis (ECP) potentially recapitulates the physiologic process of peripheral tolerance. The procedure directly generates 2 of the key players in peripheral tolerance, immature DC and apoptotic leukocytes. After infusion of the ECP product, DC and apoptotic leukocytes are rapidly taken up by the reticuloendothelial system and concentrated in the spleen and liver. Internalization of apoptotic leukocytes by resident tissue DC, and possibly ECP-induced DC, produces tolerizing DC that can suppress effector T cell responses. If naive T cells encounter tolerogenic DC and recognize the selfpeptide:MCH complex, Treg cells (the 3rd key player in tolerance) will be generated.
Studies have shown that Treg cells are significantly increased in the peripheral blood of patients that are treated with ECP up to 1 year following cessation of ECP therapy. Unlike conventional immunosuppressive therapy, ECP restores immune tolerance in solid organ transplant rejection and GVHD without increasing the risk of infection or malignancy. Generation and activation of Treg cells occurs in an antigen-specific manner, which may explain the targeted effects of ECP. In theory, ECP is an ideal treatment for autoimmune diseases; immunosuppression is specific and persists long after stopping therapy.
I thought the T-cell mechanism of action was especially interesting given Mark Davis' findings, the latest UK study on metabolically impaired white blood cells, and what Dr Chia told me last appointment about Dr Klimas' successful T-cell treatment experiment.
-----------
Note: Photopheresis is distinct from ultraviolet blood irradiation (UBI) which is sometimes prescribed by naturopaths and LLMDS and has been used by some ME/CFS patients with mixed results. UBI does not involve separating white blood cells or treating them with 8-methoxypsoralen. The blood volumes treated in UBI seems to also be less. Sometimes UBI is called photopheresis by naturopaths / LLMDS but it is technically distinct.
That said, the fact that UBI is sometimes effective for ME/CFS and Lyme makes me wonder if photopheresis has even greater potential.
Photopheresis seems to be more firmly under the auspices of mainstream, allopathic medicine and is used by major hospitals and by researcher immunologists / oncologists. UBI seems to be more commonly associated with alternative and integrative medicine perhaps because of its lower cost and requirement for fewer speciality personnel and less expensive equipment.
I understand that PR member @Wayne underwent UBI (it seems it was referred to as photopheresis) with positive effect. Any comments from him or other UBI experienced patients would be much appreciated!
-----------
My concern with photopheresis (and UBI) is the unknown potential for cancer (UV light can cause genetic mutations and 8-methoxypsoralen is a known carcinogen). However I can find no literature linking photopheresis to long term cancer incidence, and it could potentially be preventative of cancer by restoring immune functionality.
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