Rituximab for MCS and CFS

kyzcreig

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Update:

It's been 6 weeks since first infusion. The reduction in sensitivities and fatigue peaked in week 3-4 and has plateaued or decreased slightly since. I am better but I am looking for at least >90% recovery.

I am currently investigating IVIG, I may try a small amount in the USA and then fly to Taiwan/China for a full treatment if I respond.

I responded very well to hard chamber HBOT. This is immune modulating (suppressing). I notice a marked decrease in all symptoms and improved energy. It is similar to IV Ozone but longer lasting and less conspicuous.

Unfortunately hard chamber HBOT is expensive in the USA and must be done out of pocket for indications like this. We have a mild chamber at home and this is good but pales to the hard chamber.
 

perrier

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Update:

It's been 6 weeks since first infusion. The reduction in sensitivities and fatigue peaked in week 3-4 and has plateaued or decreased slightly since. I am better but I am looking for at least >90% recovery.

I am currently investigating IVIG, I may try a small amount in the USA and then fly to Taiwan/China for a full treatment if I respond.

I responded very well to hard chamber HBOT. This is immune modulating (suppressing). I notice a marked decrease in all symptoms and improved energy. It is similar to IV Ozone but longer lasting and less conspicuous.

Unfortunately hard chamber HBOT is expensive in the USA and must be done out of pocket for indications like this. We have a mild chamber at home and this is good but pales to the hard chamber.
Have you ever tried ozone sauna? ( Hocatt)
 

Learner1

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@kyzcreig Thank you very much for sharing your story. I'm in an HBOT now and can attest to its benefits and have followed much of the same treatment path with nutrient IVs, ozone, etc.

I was approved for IVIG today and will start next week. I'm wondering why you started with Rituximab, instead of doing IVIG first, then Ritux.

And, have you looked into 10 pass ozone?
 

Gingergrrl

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It's been 6 weeks since first infusion. The reduction in sensitivities and fatigue peaked in week 3-4 and has plateaued or decreased slightly since. I am better but I am looking for at least >90% recovery.
What percent would you put your recovery at this point? Will you be doing a maintenance infusion of Ritux in three months?

I am currently investigating IVIG, I may try a small amount in the USA and then fly to Taiwan/China for a full treatment if I respond.
Is your doctor not willing to prescribe IVIG in the US? It seems strange to me (the doctors, not you!) who are willing to prescribe Rituximab but not willing to prescribe IVIG first. You are not the first person that has posted this or shared it with me via PM and I don't get it. My understanding is that if someone has autoantibodies and is a responder to high dose IVIG, then there is a decent chance they could be a responder to Ritux (vs. randomly trying Ritux first). Did your doctor explain their rationale? I am genuinely curious b/c it is opposite of what I have come to understand.
 

kyzcreig

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Have you ever tried ozone sauna? ( Hocatt)
I have not. I tried other kinds of Ozone therapy but only noticed anything with with IV Ozone. Have you tried it, did you how does it compare to IV Ozone?

@kyzcreig Thank you very much for sharing your story. I'm in an HBOT now and can attest to its benefits and have followed much of the same treatment path with nutrient IVs, ozone, etc.

I was approved for IVIG today and will start next week. I'm wondering why you started with Rituximab, instead of doing IVIG first, then Ritux.

And, have you looked into 10 pass ozone?
:) Yes HBOT is amazing.

Rituximab was cheaper and had more/better research for CFS. Also, the doctors didn't like the idea of IVIG. I could have convinced them but I chose a path with less resistance. I almost had it done in week 3 but decided to wait a while for Rituximab to work, I was already noticing benefits.

I have heard of Ozone protocols like ten pass, but I haven't tried it. I imagine it would be more effective. The dream would be Ozone results with long lasting effects. Maybe if you were infusing it throughout the day in small doses. I would try that. The only challenge is administration. Leaving a catheter in has risks.
 

Gingergrrl

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Rituximab was cheaper and had more/better research for CFS. Also, the doctors didn't like the idea of IVIG. I could have convinced them but I chose a path with less resistance. I almost had it done in week 3 but decided to wait a while for Rituximab to work, I was already noticing benefits.
That is so interesting to me b/c if it is working due to killing B cells and stopping autoantibodies from being re-stocked, it would take many months unless the full-grown autoantibodies were already close to zero from ongoing IVIG. I wouldn't think that Ritux would work in three weeks without having done IVIG first b/c the autoantibodies would still be there (only the new ones would not be created). I hope I am explaining this well which I might not be!
 

Learner1

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I have not. I tried other kinds of Ozone therapy but only noticed anything with with IV Ozone. Have you tried it, did you how does it compare to IV Ozone?

:) Yes HBOT is amazing.
I have heard of Ozone protocols like ten pass, but I haven't tried it. I imagine it would be more effective. The dream would be Ozone results with long lasting effects. Maybe if you were infusing it throughout the day in small doses. I would try that. The only challenge is administration. Leaving a catheter in has risks.
I know 2 patients who have done 10 pass, at 3 different clinics, one with Lyme and coinfections and one with chronic EBV. The Lymie says its the only thing that helped him and the EBV gal said she felt better than she had in 20 years and is still good 14 months later. The Lymie needs s boost every 2-3 months.

I've had good results with UVBI, IV ozone, and HBOT, and the nutrients, but it hasn't been enough to push me over the hump to wellness.

I spent a year wondering if my infection titers were real and had doctors tell me they weren't due to lack of IgM, only to find they were very real when I saw a top CFS specialist.

The specialist found the adrenergic and muscarinic antibodies he thinks caused by the infections irritating my immune system and my tendency to autoimmunity.

So, the game plan is to whack the infections with antivirals/antibiotics while boosting my low IgG with IVIG and using LDN and see what happens, and then possibly try Rituximab next year. I've tried every natural immunomodulator and it just wasn't enough.

I'm also considering 10 pass ozone and cord blood stem cells at that point, and will weigh pros and cons of all with whatever's known a year from now.

Not sure what the right answer is here... I suppose its individual depending on what exactly ails us...

Thanks again for sharing your story. Its good to know that going abroad may be a valid option.
 

deleder2k

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@kyzcreig if trying rituximab to treat ME remember that average response time is probably around 6-8 months. I wouldn't be prepared to conclude before 15 months has elapsed. If you spice things up with IVIG it will not be easy to know what caused your improvement.
 

Gingergrrl

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I wouldn't be prepared to conclude before 15 months has elapsed.
@deleder2k So in your opinion, patients should not make any conclusions re: being a responder to Rituximab unless they have done maintenance infusions for the full 15 months? (I am not disagreeing with you vs. I have heard so many different things in different places that I am trying to sort it out in my brain)!

If you spice things up with IVIG it will not be easy to know what caused your improvement.
I agree and it is hard to know what is due to what.
 

deleder2k

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No, you don't have to take maintenance infusions for 15 months to see whether you are a responder or not. You just have to take 1000mg+1000mg on day 0 and day 14 and wait. It seems like the response rate is the same whether you are only taking two infusions or if you take two infusions + maintenance infusions.
 

Gingergrrl

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No, you don't have to take maintenance infusions for 15 months to see whether you are a responder or not. You just have to take 1000mg+1000mg on day 0 and day 14 and wait. It seems like the response rate is the same whether you are only taking two infusions or if you take two infusions + maintenance infusions.
Thanks @deleder2k and for some reason I had thought you had once posted (several months ago) that the people who achieved remission were able to maintain it longer if they'd had the maintenance doses than the people who did not. But I might be remembering that wrong.

My protocol was on days zero and 14 but it was the autoimmune formula so each dose was 600 mg for me.
 

kyzcreig

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Regarding Rituximab, not much has changed. Environmental and food sensitivities improved 20-30% in weeks 3-4 and then plateaued at 15-20% ever since. Some patients don't note improvement until 3 months in. I am 2 months in now (61 days).

I am doing HBOT occasionally and see major benefits, but they don't last. I would say Rituximab synergizes with other treatments. So I respond better to HBOT, IV Ozone and IV nutrients. I recently tried myofascial release therapy. I felt much better. It did nothing for sensitivities but it helped with malaise and posture. I had a lot of muscle tightness.

A few days ago I tried a small dose (10g) of IVIG. Environmental and food sensitivities improved 40%. This was only 1/14th of a full course for my weight. It's too soon to say how long this will last.

I am going to Kaufman's OMI-spinoff Center for Complex Diseases in Mountain View later this month and will discuss doing a full course of IVIG. Getting this covered off label will be difficult. Flying to Taiwan is an option but you're still talking ~$10k per treatment not including travel and accommodation.

At this point, I attribute any fatigue to environmental and food sensitivities. I think if I solve this I will be >90% recovered. OMI believes sensitivities are due to MCAS. I am working on the MCAS lines of therapy currently. So far the first lines have done nothing or made me worse: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/
 
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Fogbuster

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It's impressive to hear you got such a significant improvement from such a small amount of IVIG. It's definitely something I'll be looking more into. But heck, I had no idea the costs were so high! That's gonna be a bit of a hurdle to overcome for sure. Looking forward to hearing your next update. Good luck!
 

Gingergrrl

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It's impressive to hear you got such a significant improvement from such a small amount of IVIG. It's definitely something I'll be looking more into. But heck, I had no idea the costs were so high! That's gonna be a bit of a hurdle to overcome for sure. Looking forward to hearing your next update. Good luck!
If you are in the US and can get it approved by your insurance, the co-pays for the IVIG and infusion costs are not too bad.