Photopheresis to restore ME/CFS immune tolerance? (T-Cells / Immature DCs / Apoptotic leukocytes)

jaybee00

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Hi,

This person did photophoresis (or maybe UBI) and said it was helpful...you have to look back to the very first blogs tho.

chronicfatiguechronichope.blogspot.com
 

Jesse2233

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Very interesting story by a woman ill over a decade with various autoimmune issues (with a likely infectious trigger). A consistent complaint is severe fatigue (exhausted showering etc). She reports moderate benefit from antibiotics, supplemental O2, and IVIG but seems to have a near total remission from photopheresis including complete resolution of her fatigue.

It took almost six months to start the photopheresis, because I felt I needed the insurance to agree to pay. Finally I decided not to wait any longer, and told the doctor that we should start immediately. May, June and July I had the two-day treatment of photopheresis. It is a process that removes the blood, then separates the white blood, then exposes it to a light source, and then the blood is returned. This process modifies the immune system, but does not suppress it.

After the three treatments my ANA dropped again to 320, the RNP antibodies fell to normal, and the anti-cardiolipin antibodies disappeared. I felt better than I have in years. The fatigue and flu-like symptoms were completely gone. The Raynaud's symptoms were virtually gone. I was sitting with short sleeved shirts in December. When I go to sleep, I no longer wear 3 layers and can wear a single nightshirt. The burning in my lungs has disappeared.

http://www.rheumatic.org/linda2.htm
 
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Jesse2233

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Re-reading this study on photopheresis and autoimmunity (1). It gives an interesting overview of various clinical trials using photopheresis

TL;DR seems to work well for Lupus, Scleroderma, Atopic dermatis, Epidermolysis bullosa acquisita. Has some benefit for rheumatoid arthritis. Doesn't seem to benefit multiple sclerosis
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  • Scleroderma

    Pilot study - 100% (2 of 2) reported considerable benefit
    Multicenter RCT - 68% showed significant benefit

  • Lupus

    Pilot study - 70% (n=10) had significant clinical responses
    Several case studies with variable results

  • Atopic dermatis

    Retrospective review (n=105), 81 had positive response

  • Epidermolysis bullosa acquisita

    Several case studies (n=8) all patients had benefit

  • Rheumatoid arthritis

    Prospective study (n=7) 3 showed improvement
    2nd prospective study (n=7) all had improved labs, only 2 had lasting improvement

  • Multiple sclerosis

    Pilot study refractory MS (n=2) significant improvement in both patient's clinical status / quality of life
    Double blind placebo controlled trial of chronic progressive MS (n=8) no significant benefit
    Pilot studies on secondary progressive MS (n=9) no benefit

  • Type 1 diabetes

    Double blind study (n=19) decreased dependence on insulin
 

Jesse2233

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I found an interesting patent that discusses the use of photopheresis for chronic intracellular infections: https://www.google.com/patents/CA2250919C?cl=en

It gives the following explanation and viruses as examples.
A variety of human viruses are able to infect and replicate within mononuclear cells, or infectious viral particles may remain present within the mononuclear cells. The mononuclear cells can act as either a source for viral replication and spread of the virus, or as a reservoir of infectious virus particles which is difficult for the immune system to eliminate. Failure to eliminate these sources of infectious virus may lead to the establishment of a chronic condition.

Viruses which can infect, replicate within, or reside in mononuclear cells include, but are not limited to, arthropod borne viruses, enteroviruses, paramyxoviruses (RSV), herpes viruses, cytomegalo-virus (CMV), Epstein-Barr virus (EBV), hepatitis B virus (HBV), hepatitis C virus (HCV), hepatitis D virus (HDV), hepatitis G virus (HGV), and retroviruses (such as HIV).
Later it mentions non-viral culprits that include Lyme (arthropod-borne bacteria) and mycoplasma
Non-viral pathogenic agents which can infect, replicate within, or reside in mononuclear cells include, but are not limited to, fungi, bacteria such as arthropod-borne bacteria, mycoplasma species and mycobacteria species, and parasites such as plasmodium species and other insect-borne parasites.
It then address a potential mechanism of photopheresis to address said infections...
The present invention is directed to the use of photopheresis to inactivate or interrupt the replication cycle of pathogenic agents such as bacteria, parasites and viruses, and/or modify or kill blood cells which have been infected with such agents. While it is not intended that the scope of the present invention be limited by any specific theory of operation, it is believed that infections which are not controlled by the normal immunological response of a patient can be treated by damaging infected nucleated blood cells (such as mononuclear cells) using a photopheresis treatment according to the invention. The treated cells as well as killed and/or attenuated virus, peptides, native subunits of the virus itself (which are released upon cell break-up and/or shed into the blood) and/or pathogenic noninfectious viruses are then used to generate an immune response.

It is readily apparent to those skilled in the art that the method of the present invention is useful against a wide variety of human pathogenic agents including but not limited to those bacteria, parasites and viruses which infect, replicate in, or reside as infectious agents in, mononuclear blood cells.
It elaborates further...
Ultraviolet A light (UVA) damages abnormal T-cells rendering them more immunogenic. After cells are photoactivated, reinfusion of these altered T-cells causes an immunological reaction that targets T-cells carrying the same surface antigens24. This results in the production of a highly specific immune response against the abnormal cells (either a cancer clone or perhaps T-cells which express viral antigens on their surface). It is estimated that approximately 25-50% of the total peripheral blood mononuclear cell 5 compartment is treated per photopheresis session (2 consecutive days schedule).

Work by VowelsZS demonstrated monocytes treated in an extracorporeal circuit of plasma containing 8-methoxypsoralen and exposure to ultraviolet-A light (photopheresis) releases tumor necrosis factor-alpha, IL-1, IL-6, and possibly IL-8. It is believed that photopheresis modulates the activity of peripheral blood monocytes/macrophages.

It is readily apparent to those skilled in the art that the method of the present invention is useful for the treatment of infections of mononuclear blood cells by the agents described above
@Hip @halcyon does this patent pass theoretical muster? might the infusion of dead T-cells trigger an immune response that also addresses intracellular infections and viral particles?

Some background on the patent inventors...

Bruce C. Stouch has a Ph.D. in Biostatistics and Epidemiology and has worked for various biomedical firms. Interestingly he was listed as a co-author on the 2012 Ampligen trial in PLOSOne

Susan McLaughlin, RN, BSN, CDE is now affiliated with The University of Chicago Medicine Kovler Diabetes Center.

Jerome Zeldis, M.D., Ph.D. is the CMO of Sorrento Therapeutics an antibody-centric, clinical-stage biopharmaceutical company developing new treatments for cancer, pain management, inflammation and autoimmune diseases.

The company THERAKOS is listed as an applicant on the patent. They are manufacturers of photopheresis devices. Obviously a photopheresis device manufacturer has financial incentive to broaden the use of their equipment to as many indications as possible, but the fact that the patent was granted means that at least the USPTO sees some merit in it.

I will reach out to the inventors and see if they have any further theoretical or clinical insights to add
 
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Hip

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The company THERAKOS is listed as an applicant on the patent. They are manufacturers of photopheresis devices. Obviously a photopheresis device manufacturer has financial incentive to broaden the use of their equipment to as many indications as possible, but the fact that the patent was granted means that at least the USPTO sees some merit in it.
The company Therakos seem legit judging by their website, although note that patent offices don't generally concern themselves with whether an invention works or not; they just ensure that the patent contains enough instruction for the invention to be constructed or manufactured by an expert in the field ("those skilled in the art" as they say in patent-speak).

I don't know enough to comment about how effective this treatment might be for eliminating viral infection from mononuclear cells, or indeed whether eliminating such infections would be helpful in ME/CFS, but is is possible it might (I did note in this thread that the three main viruses linked to ME/CFS are all able to infect B-cells, a type of mononuclear cell).
 
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A study friend of mine is dermatologist and we talked about that treatment 2 years ago. I thought about doing it until i heard about the cost. Its around 2000€ per treatment and you need up to 50. Good luck finding someone who is willing to pay for this for a disease that for many ppl doesnt exist in the first place. There is no indication for a
extracorporeal photopheresis for any disease at the moment. Its made on a case to case basis. If you really get someone to pay it i would say do it right away.
 

ScottTriGuy

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Jesse2233

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A video testimonial from one of Dr Karima Hirani's ME/CFS + Lyme patients. She did quite a few treatments (Ozone, GcMAF, PEMF, Abx), but it seems UBI was a cornerstone of her improvement. She went from mostly bedbound to 80% functionality in 6 months after 3 years of illness

 

Jesse2233

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Some interesting UBI accounts. These are mainly Lyme patients, but again I wonder how much of this is actually killing pathogens vs restoring immune tolerence

peggster
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Date Joined Aug 2011
Total Posts : 73
Posted 9/23/2012 11:53 AM (GMT -7)
I did UVB treatments about 4 years ago for Ebstein Barr with a Doctor in Atlanta. Treatments cost $55 each, affordable. Living a couple hours away, I opted to do them closer together & was on the couch for a month...knocked me for a loop! I also have longterm mold exposure/illness....at the time I did not know I had lyme (just diagnosed but have had it for years apparently). I had been so dysfunctional with fatigue that I had to try something & my doctor recommended it. I did 5 treatments and truly credit UVB to a HUGE change in my quality of life! I don't know if I was sick from the EBV, lyme or mold or ALL COMBINED but this truly turned my health around to where I was functional. I had been so sick & fatigued that I felt I was slowly dying. I wouldn't hesitate to do them again, in fact am thinking of that as the recent tick bites have really got me dysfunctional with fatigue once again. I also know of another top Atlanta doc who is privvy to UVB. I, myself, am more concerned with using abx as I have severe candida issues from mold illness. Good luck. Do your homework, I just wanted to add my experience.

[...]


colette123
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Date Joined May 2013
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Posted 5/4/2013 6:25 PM (GMT -7)
I have been doing the UVBI for latent lyme and bartonella....i have had over 20 IV's now in the past year, and they have helped more than anything else...as it is a blood treatment, I don't know if it is possible to completely eradicate lymes (because it is tissue, bone and brain at late stages), but it has really helped my brain fog, energy, overall pain too..it is very expensive unfortunately and insurance doesn't cover it...but if you have the means, I highly recommend it!!
Blessings!

[...]

3HumpedCamel
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Date Joined Aug 2016
Total Posts : 567
Posted 10/5/2016 8:58 AM (GMT -7)
I have done UBI, where they draw the blood out. I was doing lots of detoxing, so for me, it sent my Lyme into complete remission. I was symptom free for 9 months or so. I got nabbed by co-infections next, and I had completely stopped UBI treatment. My UBI had ozone added to it also.

https://www.healingwell.com/community/default.aspx?f=30&m=2336372
 

Jesse2233

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Want to add to this thread that I talked to someone in touch with many autoimmune dysautonomia patients, and she told me she has heard of a few cases where photopheresis improved patients' condition (to varying degrees)
 

Gingergrrl

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Want to add to this thread that I talked to someone in touch with many autoimmune dysautonomia patients, and she told me she has heard of a few cases where photopheresis improved patients' condition (to varying degrees)
Is this the same doctor that I am in touch with now or someone else? (Actually you didn't even say it was a doctor so I may be totally wrong)!