Rituximab Phase III - Negative result

Learner1

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@Gingergrrl I wouldn't pretend to know anything about dosing!! I've left that to my doctor. But, the second opinion from the immunologist who specializes in autoimmunity co-occurring with immunodeficiency named the exact same dose abd protocol as my main doctor.

And, just to be clear, my main diagnosis is ME/CFS. I was diagnosed by a top specialist, fit the criteria, and my labs match many of the findings of the researchers.

I do suspect that most ME/CFS patients have other, treatable diagnoses, should their doctors care to look, whether it's Hashimotos, chronic EBV or other infection, CCI, nutrient deficiencies, some other weird autoummunity, mitochondrial dysfunction or something else entirely, and even more likely, with multiple of these together. Getting adequately tested so these problems can be treated is critical.
 

Gingergrrl

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@Gingergrrl I wouldn't pretend to know anything about dosing!! I've left that to my doctor. But, the second opinion from the immunologist who specializes in autoimmunity co-occurring with immunodeficiency named the exact same dose abd protocol as my main doctor.
I wanted to clarify that I wasn't questioning your Rituximab dosage (and wasn't questioning my own either) and I also had three doctors agree that my dose was correct for me using the BSA (body surface area) formula.

I am questioning the discrepancy in dosing between Fluge & Mella's 2015 and 2019 studies. Everyone got Rituximab per the BSA formula in the first study but then in the second study, they only used the BSA formula for the first two doses and then switched all subjects in the 2019 study to a standard dose of 500 mg. For some people, 500 mg would be adequate but my own dose is 600 mg (and I am not a large person) so I know that 500 mg was not adequate for some of the subjects.

I also cannot think of a clinical reason to change the dosing unless it was simply b/c of the cost/ financial reasons. I wish that Fluge & Mella could explain why they did this and this will continue to niggle at me until they do. And it still may have turned out that Ritux was not an effective treatment but since they changed the dosing, that factor can never be eliminated.

I do suspect that most ME/CFS patients have other, treatable diagnoses, should their doctors care to look, whether it's Hashimotos, chronic EBV or other infection, CCI, nutrient deficiencies, some other weird autoummunity, mitochondrial dysfunction or something else entirely, and even more likely, with multiple of these together. Getting adequately tested so these problems can be treated is critical.
I agree with this as well and I have known hundreds of people through PR since joining in 2014 and I cannot think of anyone with an "ME/CFS" diagnosis who doesn't also have another diagnosis whether it is POTS, MCAS, Hashimoto's, Lyme, CCI, Fibromyalgia, EDS, Sjogrens, Small Fiber Neuropathy, other autoimmunity, other immune deficiency, or even cancer.
 

jason30

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Firstly it was getting my thyroid and adrenals treated, I needed medication for both these major problems but the NHS wouldn't help. I had 24 hour saliva cortisol/DHEA test done and blood tests for thyroid which were abnormal. About 10 months before this I had found out that I had high levels of mercury in my hair and in my blood so gradually had all 13 amalgams removed and over the next 2 years chelated it out as per Andy Cutler. It took over 5 years for the levels to get back to normal. Last time I was tested I still have Nickel over the range and will have to get it checked again to see if its back to normal.

During 2007 I learned about the mitochondria and had Dr Myhill's ATP test done showing only 48% ATP whereas it should have been more than 60 and it was rapidly used up during the test. There were blockages in the Translocation Test, first time round it was a virus and when done about 4 years later nickel showed up again.

I started supporting my mito with things like very high dose magnesium, various minerals to help with my detoxification issues, Fish Oil, GLA, Co Q10 and the active B Vits. I knew I had a high need for folate but I cannot tolerate it in supplements because it gives me awful migraines but I now have a diet high in natural folates so that is sufficient hopefully.

Since then I have had my genetics done through 23andme and it explains why I have had the build up of toxic metals and also tests have shown high levels of things like PCBs, I don't posses one of the major enzymes for detoxification, GSTM1 and have loads of other SNPs that make detoxification of heavy metals and some drugs/compounds very difficult. My genetics explain why I had a stillborn baby in 1973 linked to Spina Bifida and also why there is so much cancer in my family. I am just grateful I found out about all this so at least I can support my body with various targeted supplements but without the testing I wouldn't have known exactly where the problems were.

I have just had Genova's Organic Comprehensive Profile done so see what is exactly happening with the metabolites and hope to see some improvements from when I last had an Organic Acids test done in 2013.

The other major thing that has helped me was getting an oxygen concentrator about 5 years ago when I had autonomic testing done at Breakspear here in the UK. It showed that at that time I only had 50% of the normal oxygen at cellular level. Nothing wrong with my lungs, they are fine but I had this issue of poor oxygen and also high CO2 and was told this was very bad for me and I needed to breath oxygen from a concentrator for up to an hour at a time and could do this 3 times daily. I should say that I was at my worst for that test because I had gone for a swim only about 3 hours before the test and was absolutely worn out at the time of the test not having recovered at all but I suppose that was a good thing to do because it showed up a massive problem with how poor my oxygen was at cellular level.

It made a really big difference to how I felt and as time has gone on I only use it for about 20 minutes at a time and 30 if a bad day. It puts back energy into my body that I have used up.

I have also taken many different herbal products as I was diagnosed with Lyme and borrelia but I am still not sure if this was valid or not but the herbal tinctures definitely helped me to improve for at least a period of time but usually during winter because of the viruses I would pick up so easily my health would drop back.

Finally I should mention I have been very strict over my diet, eating low carb but lots of veg, nuts/seeds, some dairy, small amounts of meat and fish and as mentioned previously since September have started taking specific probiotics and beneficial fibres like acacia, psyllium and chia to try and feed the good bacteria that I am so short of as per Ken's suggestions at CFS Recovery.

Hope this helps.

Pam
Hi @bertiedog , may I ask what you do to support GSTM1?
 

Learner1

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Hi @bertiedog , may I ask what you do to support GSTM1?
You might find these papers interesting...

https://www.nature.com/articles/srep02704 my

https://nutritionj.biomedcentral.com/articles/10.1186/1475-2891-10-11

https://cebp.aacrjournals.org/content/8/11/965

https://www.frontiersin.org/articles/10.3389/fgene.2019.00765/full

https://selfdecode.com/gene/gstm1/#experiments_decrease

In conclusion, about 40-50% of Caucasians have this gene deleted and eating a lot of cruciferous vegetables may help. Other related grn d may compensate.
 

jason30

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You might find these papers interesting...

https://www.nature.com/articles/srep02704 my

https://nutritionj.biomedcentral.com/articles/10.1186/1475-2891-10-11

https://cebp.aacrjournals.org/content/8/11/965

https://www.frontiersin.org/articles/10.3389/fgene.2019.00765/full

https://selfdecode.com/gene/gstm1/#experiments_decrease

In conclusion, about 40-50% of Caucasians have this gene deleted and eating a lot of cruciferous vegetables may help. Other related grn d may compensate.
Thank you very much, this is very interesting to read.

Especially the study that confirmed that the absence of GSTM1 activity can be compensated by the overexpression of GSTM2.

I love cruciferous vegetable, try to raise the intake.

And arsenic is on the list of things that decrease GSTM1. Ah, I have heavy metal load and arsenic is one of them.

Thanks again!