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

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:
  1. Blood is taken from the body via a peripheral catheter
  2. White blood cells (WBCs) and platelets are separated from whole blood
  3. WBCs are treated with a photosensitizing agent called 8-methoxypsoralen
  4. WBCs are subsequently irradiated with ultraviolet wavelengths of light
  5. The treated WBCs, platelets and whole blood are returned to the patient via a second peripheral catheter
Treatments are done bi-weekly for up to six months on an outpatient basis. Side effects include transient drop in blood pressure, light sensitivity, and transient tiredness.

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

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.
upload_2017-11-3_20-28-49.png

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.
 
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Jesse2233

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Some of the barriers to photopheresis treatment are discussed here:
Although preliminary studies for many of the autoimmune conditions described earlier suggest that ECP may in fact be a safe, effective means of therapy, there are many barriers to overcome before this intervention can be used routinely in clinical care.

The most significant is the relative lack of animal or human studies to support clinical trials. To date, none of the placebo-controlled randomized ECP trials that have been performed show definitive evidence to support the use of this intervention as a standard therapy for autoimmune disorders. Unfortunately, many of the trials were performed with earlier iterations of ECP that relied on oral 8-MOP ingestion, which shows highly variable absorption kinetics between individual patients. In addition, the variable ECP treatment regimens make it difficult to compare pilot studies for the same autoimmune disorders.

Although animal models are available for several T-cell mediated autoimmune diseases, in vivo studies using “ECP treated splenocytes” has been limited to mouse models of MS, diabetes and lupus. A second and related barrier in the USA is the financial costs of ECP, which limits the ability to perform trials.

Hospitals charge upwards of $6000/procedure, with patients requiring up to 6 months of treatment on current protocols. Even with generous “research rates”, a study that is appropriately powered to measure small, albeit clinically significant changes with ECP therapy may cost several millions of dollars. Nor is the cost likely to be covered by patient’s commercial health care insurance or Medicare.

At this time the only CMS-approved indications for ECP are CTCL, GVHD, heart transplant rejection and lung transplant rejection – but only if the patient is enrolled in a CMS approved clinical registry designed to collect information about the efficacy of ECP for treating pulmonary allograft rejection. So, although there may be data to support the use of ECP for certain autoimmune indications, the financial burden to the patient makes this treatment untenable. Other potential barriers are patient compliance and limited treatment locations.

It is often reported that there are approximately 200 facilities in the USA and an additional 100 sites outside of the USA where patients can receive ECP. Most of the treatment centers are located in urban areas and many patients have to drive long-distances for therapy and stay at local hotels in order to receive two-consecutive ECP procedures. Patients who commit to ECP therapy are required to make repeated, consecutive visits to the treatment center on a weekly to monthly basis for months to years.

The time and additional costs associated with ECP may complicate patient compliance, especially since the potential benefits of ECP are often delayed. Research is also needed to reduce the cost and increase accessibility to ECP. At present, the US Food and Drug Administration (FDA) has only approved one closed-system device for the clinical administration of ECP (Therakos, West Chester, PA, USA). Our European colleagues have the option to use cheaper, open-system devices to administer ECP and these devices appear to provide the same benefits as the closed system. Perhaps clinical trials for autoimmune diseases can be achieved using more cost effective means outside of the USA.
 

Jesse2233

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An interesting UBI anecdotal story from a Lyme patient:
I had great success with UBI in 2015. I got better very quickly. I honestly feel like Lyme went into remission, and I had a year of no symptoms. I did 16 treatments, twice per week for 4 weeks, once per week for 4 weeks, and once every 2 weeks for 8mweeks.

I am back in treatment for very different issues now, that I have concluded are co-infections. I'm not sure why now. I don't have an answer.

I have not gone back for more, mostly due to cost and time it took out of my work schedule.

1. I don't have any of the same symptoms, tested + for mycoplasma which was negative before. Doc is sure I have babesia rearing it's head and I have pretty well proven Bart from beginning herbals

2. I think I stopped way too soon with UBI. I stopped when symptoms left and should have given it several more months based on what I've learned here

3. For some reason my body kept the co-infection symptoms at bay for a long time... now they're back and pretty harsh.

4. I will *never* regret the great symptom free year, and I was back playing golf and softball and working out like crazy. I had energy and no pain, and it was wonderful.

https://www.healingwell.com/community/default.aspx?f=30&m=3742750
This patient reports profound benefits from UBI. Note however that this comes from a commerical testimonial so should be taken with a grain of salt:

“I keep pinching myself… it has been two months since we left Riordan and I STILL feel amazing!” That’s what I said to my husband after coming home from two weeks of intense IV Vitamin C (IVC) and Ultraviolet Blood Irradiation (UBI) treatments at the Riordan Clinic in Kansas.

....

While it didn’t happen overnight, it happened in six days. The changes in my body were shocking. I went from sitting in a chair for four straight months (too fatigued or in too much pain to do simple chores; barely dragging myself through the day) to literally moving ALL day (7 a.m. to 9 p.m.) without sitting. That is a miracle in my book!

https://riordanclinic.org/2016/06/journey-healing-finding-new-life-lyme-disease/
And @Wayne's perivously mentioned experience:
I also did a process called photophoresis with a local doctor. Blood is withdrawn from the body, ozonated and exposed to ultraviolet light, and then returned to the body. There were times when I immediately felt much better, and would have a couple of good days afterwards. Other times my body actually felt stressed. I think if I would have kep up with it, I could have been able to guage how much was helpful and how much was too much.

http://forums.phoenixrising.me/index.php?threads/ozone-anyone.10372/
 
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Jesse2233

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Can you elaborate on what the treatment was, and the results?
Sure, from my Dr Chia questions thread:
Dr Chia is interested in the T-cell expansion findings of Mark Davis. He believes the mystery antigen will end up being an enterovirus. He says that similar T-cell expansion happens in the context of colon cancer which has been linked to enteroviruses.

He said Mark Davis' findings are good news for patients. It means that T-cells can be removed from a patient, treated with other T-cells that have immunity to said antigen (e.g. an enterovirus), and re-injected. He said Nancy Klimas carried out a similar experiment which removed T-cells and treated them with IL-2 (he said IL-2 is too toxic to receive directly). He said the ME patient who received this experienced profound benefit for a month but it has not been repeated due to lack of funding.

He thinks that besides new antivirals, this is the future of ME/CFS treatment.

http://forums.phoenixrising.me/inde...day-what-questions-should-i-ask.49595/page-13
It's not a perfect analogue of ECP or UBI, but it does involve extracorporeal T-cell augmentation and a positive, albeit transient, treatment outcome
 

Jesse2233

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Here's a fascinating paper on the treatment of a Lyme patient (ill for 5 years) with photopheresis and his subsequent full recovery. It appeared in the 1994 edition of the Journal of the American Academy of Dermatology.

Reported by Drs Jean P. Randazzo, MD,a, c Francis X. DiSpaltro, MD,a, b, c Carolyn Cottrill, MD,c Albert S. Klainer, MD,a, cAllen C. Steere, MD,d and Emil Bisaccia, MD

In August 1986, joint stiffness and fatigue developed in a 46 year-old man. Although he lived in an endemic area for Lyme disease, he did not remember tick bites or erythema migrans. In December the right knee became swollen; in March 1987, the left knee also became swollen. Antinuclear antibodies and rheumatoid factor were absent. He was treated with intraarticular steroid injections, but the effusions recurred. Other symptoms included marked malaise and fatigue, radicular pain across the front of the chest, sleep disturbance, word-finding difficulties, and memory deficit.

(...)

In April 1990 monthly photopheresis was begun according to a previously described protocol. Examination showed a large effusion of the right knee, a small effusion in the left knee, and a tender left elbow. His IgG antibody response to B. burgdorferi was 6400 U.

By the fourth month he noted an increased energy level with symptomatic improvement in his arthritis and began to lift weights without exacerbation of symptoms. Just before the ninth month of therapy, there as an apparent flare of his Lyme disease, and 20 ml of synovial fluid was removed from the right knee. However, the joint symptoms resolved promptly I week before the tenth treatment, and the neurologic symptoms resolved soon afterward.

After the fourteenth month of therapy, treatments were decreased to once every 2 months. By the sixteenth treatment he was asymptomatic. Treatments were then given at 3-month Randazzo et af. 909 intervals. Six months later therapy was terminated because he continued to be free of symptoms.

The patient has remained asymptomatic for more than 6 months after his final course of photopheresis and has required no further therapy or surgical intervention.
His IgG antibody response to B. burgdorferi had declined to 400 U. During photopheresis therapy the patient received no additional therapeutic interventions.

http://sci-hub.cc/10.1016/s0190-9622(94)70111-3
 
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To my eye this looks like a medium risk/high cost sort of therapy. Not high cost/ high risk like say cyclo, and not low risk/high cost like Mhbot, and not low risk /low cost like guzzling vitamin d tablets.

Everyone makes their own determination of where their tolerance lies for risk and I can't question anybody's decision.

This one seems it might be theoretically sound but has little evidence in place. Why do you think the doctor feels it will work?
 

Jesse2233

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I think that's a good risk assement @Murph

My immunologist has a lot of experience with IVIG, and he was hoping it would get me all the way there. He liked IVIG because it has anti-pathogenic as well as anti-inflammatory properties without causing immunosuppression

He didn't say this explicitly so it's my guess... but I think...

1. He wants to help in whatever way he can

2. He is conservative about risk and doesn't want to try steroids, rituximab, or rapamycin (all of which we've discussed) due to their immunosuppression and the possibility that I may have a chronic infection in addition to autoimmunity / autoinflammation

3. He thinks plasmapheresis / plasma exchange / immunoadsorbtion will be too short acting and may not address the root cause

4. He is dubious that antibiotics or antivirals will be enough to address underlying immune dysfunction

5. He has a good relationship with the apheresis unit at his hospital and believes in the underlying theoretical basis of photopheresis
 

Gingergrrl

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Hey Jesse, How did your doc specifically compare photopheresis to Rituximab? Has he treated patients w/Ritux where they got infections (outside of the rare risk of PML)? I was just curious. Please let us know if you decide to try it and I don't know anyone else who has done this treatment and am very curious!
 

Jesse2233

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Hey Jesse, How did your doc specifically compare photopheresis to Rituximab? Has he treated patients w/Ritux where they got infections (outside of the rare risk of PML)? I was just curious. Please let us know if you decide to try it and I don't know anyone else who has done this treatment and am very curious!
Yes I definitely will!

If I can get insurance to cover photopheresis I'm 90% sure I'll try it. If insurance says no, I may look into UBI at a reputable clinic

He said that rituximab is generally safe and didn't rule it out for me. For whatever reason though he likes photopheresis better. I'm not sure exactly why. I think in part because he uses it with success in some of his transplant patients.

His basic thought process seems to be... how can we avoid immunosuppression while still modulating the immune system in a powerful way that's potentially long lasting? In his mind IVIG fits that model as does photopheresis
 

Learner1

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Any comments from him or other UBI experienced patients would be much appreciated!
@Jesse2233 I've done multiple UBI treatments along with high dose vitamin C and IV artesunate.

My ND did it. He has a practice with many integrative oncology patients and though he's very careful, does not seem concerned about its causing cancer. He also is beginning to do 10 Pass ozone with Lyme and other chronic infection patients.

My experience with the UBI was good. I felt great after each treatment and it helped fight the bugs. However, it was not enough to fix my extremely dysfunctional immune system or get rid of any infection I have. I believe it would help someone with a milder illness.

Interesting about photopheresis. Did you discuss it or UBI with Dr. Chedda? Who would it help and when, considering other possible treatments?
 

Gingergrrl

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His basic thought process seems to be... how can we avoid immunosuppression while still modulating the immune system in a powerful way that's potentially long lasting? In his mind IVIG fits that model as does photopheresis
Thanks and that is really interesting.

Did you discuss it or UBI with Dr. Chedda? Who would it help and when, considering other possible treatments?
I was curious about this, too. Both what Dr. Chheda thinks of it and who would be the ideal candidate (as far as their symptoms and other treatments).
 

Jesse2233

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Interesting @Learner1. How many UBI sessions did you have and what kind of effects did you notice?

My personal hunch is that 10-pass ozone therapy works in a similar way to photopheresis and UBI by deactivating cells and sending a rebalancing signal to the immune system. But ozone may go further by promoting endogenous antioxidant production through oxidative stress. I'm a bit dubious that it can directly kill enough pathogens to have an effect but hey it could be possible. That reminds me, there's a hepatitis C paper on photopheresis I read that I should post... (I suspect the MoA for both treatments is rebalancing innate immunity to clear longstanding infections)

Interestingly Dr Chheda told me that if she was a patient one of the main treatments she would try is ozone therapy. She said she's heard a lot of anecdotal benefit from her patients about it and gave me the names of some researchers to look into. I haven't discussed photopheresis with her yet. She's keen to have me try a short term antibiotic cocktail, and since I'm starting to feel better with mHBOT I'm debating if I want to take the risk of further microbiome damage. I imagine she'd be open to learning more about photopheresis given her increasing interest in plasmapheresis.

Also, I corresponded with a local amino acid specialist who said "ozone therapy is crazy good" and had an ME/CFS patient of his go from severely disabled to acting again in her theater troupe after several intensive ozone rounds in Vacouver. He floated the idea of traveling to Mexico or Thailand for less expensive treatment, but I wasn't quite ready for that
 
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Jesse2233

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So there are two papers of interest on photopheresis and Hep C that have interesting implications for its role in chronic infections.

The first is from 1999 treating 15 patients with a combo of photopheresis and interferon-alpha, and both treatments alone for 24 weeks. The combo had the best results (clearance of viral RNA), although all patients relapsed sometime after discontinuing treatment. The author posits that longer treatment could completely clear the infection.
Extracorporeal photopheresis (ECP) is approved for treatment of cutaneous, T-cell lymphoma. Evidence suggests that ECP can induce an immune response against tumor antigens expressed by malignant T lymphocytes. We theorized that if HCV-infected PBMCs express viral antigens, ECP could demonstrate antiviral activity by eliciting an immune response against these antigens. Fifteen cirrhotic patients with genotype-1 HCV, who had previously relapsed or not responded to interferon-alpha (IFN-alpha) therapy were stratified by their HCV RNA titer into one of three treatment groups: (1) ECP alone, (2) ECP + 3 MIU IFN-alpha2a subcutaneously three times a week and (3) ECP + 6 MIU IFN-alpha2a subcutaneously three times a week. All patients received treatment for 24 weeks.

Group 1 had no significant decrease in HCV RNA. Two patients in group 2 had undetectable HCV RNA at the end of treatment. One patient in group 3 had undetectable HCV RNA at the end of treatment. However, HCV RNA was detected in all three patients during follow-up. ECP alone or with IFN-alpha was well tolerated. ECP alone demonstrated no clear antiviral activity. The combination of ECP and IFN-alpha resulted in an end-of-treatment response (ETR) in three of 10 patients. All responders had elimination of serum HCV RNA by three months, although no patient had a sustained response. More intensive therapy for a longer duration may result in sustained responses. A multicenter trial is now underway.

https://www.ncbi.nlm.nih.gov/m/pubmed/10235613/
The second paper is a case study from 2017. The hep C patient developed GVHD after a liver transplant and failed immunosuppressive therapies. He was treated with photopheresis and had a dramatic positive response. My understanding is that the photopheresis did not directly treat the Hep C, but instead amerliorated his aberrant immune response to the transplant.

A 48-year-old man with hepatitis C virus (HCV) cirrhosis complicated by hepatocellular carcinoma underwent liver transplantation. His course was complicated by fever, diarrhea, abdominal pain, and pancytopenia. He developed a diffuse erythematous rash, which progressed to erythroderma. Biopsies of the colon and skin were consistent with acute graft-versus-host disease. Donor-derived lymphocytes were present in the peripheral blood. The patient was treated with corticosteroids and cyclosporine; however, he had minimal response to intensive immunosuppressive therapy. Extracorporeal photopheresis was initiated as a salvage therapy. He had a dramatic response, and his rash, diarrhea, and pancytopenia resolved. He is maintained on minimal immunosuppression 24 months later.
I wonder if a combo protocol of interferon-alpha and photopheresis could be used to treat chronic enterovirus infections (interferon acting as a direct antiviral and photopheresis helping normalize t-cell function, and reducing associated proinflammatory side effects and potentially autoimmunity). @Hip @halcyon any thoughts?
 
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Learner1

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Here is a paper that discusses the mechanisms of UBI and compares it to ECP:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783265/

Interesting @Learner1. How many UBI sessions did you have and what kind of effects did you notice?
I did about 8, about 2 weeks apart. I felt the sense of wellness I feel after HBOT, clearer head, and more energy for a couple of days.

Perhaps I didn't do enough of it.

My personal hunch is that 10-pass ozone therapy works in a similar way to photopheresis and UBI by deactivating cells and sending a rebalancing signal to the immune system. But ozone may go further by promoting endogenous antioxidant production through oxidative stress. I'm a bit dubious that it can directly kill enough pathogens to have an effect but hey it could be possible.
I had tried contacting a couple of clinics to ask more about how 10 Pass worked, but they weren't very forthcoming. It's described here:

http://thepowerofozone.com/ozone-high-dose-10-pass/

Here is a blog entry that describes the effects of ozone in infections, with references:

http://thepowerofozone.com/does-ozone-kill-ebola/

I also found a Lymie blogging about his experience with 10 pass and discussed it with him over the phone. He said he'd done several sessions 2 years ago and it was the most effective thing he's tried. Unfortunately, after his symptoms returned 18 months later, he learned that it was necessary to go back ever 2-3 months for a boost.
That reminds me, there's a hepatitis C paper on photopheresis I read that I should post... (I suspect the MoA for both treatments is rebalancing innate immunity to clear longstanding infections)

Interestingly Dr Chheda told me that if she was a patient one of the main treatments she would try is ozone therapy. She said she's heard a lot of anecdotal benefit from her patients about it and gave me the names of some researchers to look into. I haven't discussed photopheresis with her yet. She's keen to have me try a short term antibiotic cocktail, and since I'm starting to feel better with mHBOT I'm debating if I want to take the risk of further microbiome damage. I imagine she'd be open to learning more about photopheresis given her increasing interest in plasmapheresis.
So, I'm at the point of intensifying my antibiotic treatment.

I've watched as my ND has brought the 10 pass machine in. He waited for a colleague to get one and see if it was effective before committing. He trained with Dr. Rowen and has been using all modalities of ozone for about 3 years. He and the staff trained on it, and he said they did it on him (and the staff told me about it, too) and he had boundless energy for 3 days. But he's a healthy 34 year old.

Another patient with chronic Lyme is the first one to do it. He hasn't told me I should do it, and I know the protocol is something like 15 treatments at around $800 each, so its a big $$ commitment, so I've been waiting to see what he says.

I didn't think to discuss with Dr K. I'm rethinking this though... go for 3 strong and IV 3 days a week for the foreseeable future or go for the 10 Pass? I just wish I knew more about whether they'd be effecrive against chlamydia pneumoniae which is a weird bug.
Also, I corresponded with a local amino acid specialist who said "ozone therapy is crazy good" and had an ME/CFS patient of his go from severely disabled to acting again in her theater troupe after several intensive ozone rounds in Vancouver. He floated the idea of traveling to Mexico or Thailand for less expensive treatment, but I wasn't quite ready for that
Well there's a ringing endorsement! Ill try anything that's "crazy good" :rofl:

I know of 3 reputable clinics for 10 pass. It needs to be done over time, so you might be spending a couple of months in Thailand...
 

Learner1

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So there are two papers of interest on photopheresis and Hep C that have interesting implications for its role in chronic infections.

The first is from 1999 treating 15 patients with a combo of photopheresis and interferon-alpha, and both treatments alone for 24 weeks. The combo had the best results (clearance of viral RNA), although all patients relapsed sometime after discontinuing treatment. The author posits that longer treatment could completely clear the infection.


The second paper is a case study from 2017. The hep C patient developed GVHD after a liver transplant and failed immunosuppressive therapies. He was treated with photopheresis and had a dramatic positive response. My understanding is that the photopheresis did not directly treat the Hep C, but instead amerliorated his aberrant immune response to the transplant.



I wonder if a combo protocol of interferon-alpha and photopheresis could be used to treat chronic enterovirus infections (interferon acting as a direct antiviral and photopheresis helping normalize t-cell function, and reducing associated proinflammatory side effects and potentially autoimmunity). @Hip @halcyon any thoughts?
The paper I posted comparing UBI to ECP says ECP can be immunosuppressive.
 

Jesse2233

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Here is a paper that discusses the mechanisms of UBI and compares it to ECP:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783265/
Great find!

I did about 8, about 2 weeks apart. I felt the sense of wellness I feel after HBOT, clearer head, and more energy for a couple of days.
That's certainly promising. I wonder if the effects are cumulative (like in HBOT).

Unfortunately, after his symptoms returned 18 months later, he learned that it was necessary to go back ever 2-3 months for a boost.
10 pass every 2 months isn't such a bad proposition if it keeps you functional until there's a better treatment. It only takes an hour or so right?

I didn't think to discuss with Dr K. I'm rethinking this though... go for 3 strong and IV 3 days a week for the foreseeable future or go for the 10 Pass? I just wish I knew more about whether they'd be effecrive against chlamydia pneumoniae which is a weird bug.
Is there anything about CpN that would make it less susceptible to 10 Pass? Might be worth a trial to see how you fare

I know of 3 reputable clinics for 10 pass.
Are any of those in Southern California?
 

Learner1

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That's certainly promising. I wonder if the effects are cumulative (like in HBOT).
Why wouldn't they be?
10 pass every 2 months isn't such a bad proposition if it keeps you functional until there's a better treatment. It only takes an hour or so right?
That's after the initial intense 3 weeks. Right, not a bad proposition. Sure sounds more appealing than some of the drugs you're surfacing...;)

A couple of hours.
Is there anything about CpN that would make it less susceptible to 10 Pass? Might be worth a trial to see how you fare
Its acellular and has a multiphase life cycle. I haven't seen anything definitive that it DOES treat it.

Yes, that's what I'm thinking.
Are any of those in Southern California?
Yes. But not in LA. PM me.
 

Jesse2233

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Why wouldn't they be?
Fair.

To play devil's advocate, maybe after a point the benefits plateau and fail to fully address the underlying issue. That's not to say benefits wouldn't be cumulative up to that point, if such a point exists.

I'm intrigued that ozone gave additional energy to a fully healthy person who presumably had no autoimmunity or chronic infections, at least not to the point of causing disease. Does that imply that ME/CFS is truly a spectrum illness with the mildest state bleeding into "feeling slightly tired", that ozone has some sort of metabolic enhancing mechanism that can work well for anyone, or maybe both?

That's after the initial intense 3 weeks. Right, not a bad proposition. Sure sounds more appealing than some of the drugs you're surfacing...;)
Hahah, you don't want to try a CellCept / Viread / Xeljanz cocktail?
 

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Fair.

To play devil's advocate, maybe after a point the benefits plateau and fail to fully address the underlying issue. That's not to say benefits wouldn't be cumulative up to that point, if such a point exists.

I'm intrigued that ozone gave additional energy to a fully healthy person who presumably had no autoimmunity or chronic infections, at least not to the point of causing disease. Does that imply that ME/CFS is truly a spectrum illness with the mildest state bleeding into "feeling slightly tired", that ozone has some sort of metabolic enhancing mechanism that can work well for anyone, or maybe both?
I have no idea if he has any underlying issues...but a quick Google search turned up all kinds of articles on using oxygen to increase athletic performance.
Hahah, you don't want to try a CellCept / Viread / Xeljanz cocktail?
No!!:eek:

I'm not a fan of taking any pharmaceuticals and am already on more than I ever intended to be on!:bang-head: