andyguitar
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Thats interesting to know.BTW Verrillo suggests this medicine in her book on CFS.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thats interesting to know.BTW Verrillo suggests this medicine in her book on CFS.
http://cfstreatment.blogspot.com/p/cfs-treatment-guide-1st-edition_7.htmlThats interesting to know.
@StrawberryI think Cort's article mentioned the IgG removal too, at about 20,000 USD if I remember right. Pricey, but inspiring. Although if my memory serves me right, they assume it isn't the antibodies? I guess the cell trend test didn't reflect the sickness level of the patient in the way that would have explained that. I don't know though, poor understanding and poor memory. Anyway, that article grabbed my attention in a big way. I actually texted a portion of Cort's article to my daughter yesterday, here is the exact quote I sent her:
I've had my doctor's office take me on "walks" twice (about 1-2 blocks), and I get out of breath to where I can't talk any more, but my blood ox always hold steady at 97 or 98%. So IMHO it could be either thick blood, or narrowed arteries. Either way, it could explain much. Not sure if it explains some of my earlier muscle symptoms (I wound up doing a bit of searching yesterday looking for symptoms but couldn't find my specific muscle issue) but worth having a doctor try to put the puzzle pieces together.
Hopeful!
@toyfoofAs the patients were treated not that long ago we will have to wait and see.
The chances might be much better than that as the diagnosis of me/cfs is not that precise, so some of the subjects might not have had it. There is something in the back of my mind about this type of treatment when it comes to how long it lasts. Cant bleeding remember!!
@nryanh94Theoretically if this were the case, wouldn’t taking nitric oxide help
@gregh286Yes so do I.
Considering also how the m3 also regulates insulin and pancreas.funcrion can explain crazy blood sugar spikes...drops and cravings and racing hr post carbs
@MonkeyManI think I found the answer in the paper about the 10 patients who received the treatment (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5854315/)
"3 of these patients had long lasting moderate to marked improvement for 6–12+ months, 2 patients had short improvement only and 2 patients improved for several months following initial worsening."
So $20,000 for a treatment that has a 3 in 10 chance of producing long-term improvement.
@wabi-sabi@andyguitar I'm not sure if these autoantibodies are the same as Dr. Davis's something in the blood or not. As I recall(hopefully) Dr. Davis's tests were done with PMBCs and I just don't know if PMBCs have M3 or B2 receptors to react with autoantibodies. Also, I think I remember someone saying the 'something in the blood" was about the size of an exosome. Again, I don't how the size of exosomes compares to antibodies.
As I understand it, the something in the blood is affecting cellular metabolism (which has lots of unpleasant effects), but this paper is talking about something that affects the blood vessel walls and therefore oxygen delivery (which also has lots of unpleasant effects). The conclusion makes it sound as though the authors feel that PwME have more risk for heart diease than others, based on the blood vessel problems.
@raghavI think this will be helpful for those with pain and tingling sensations in their extremeties also. I am diabetic so it is a double advantage if it works. Lets see how it goes. Fingers crossed.
@Hopeful2021 I'm afraid I don't. I just found this paper online. I'm very sorry, wish I could help!@MonkeyMan
Hello. Do you or someone else that you know actually know these ten people in the study? Is it possible to ask them questions?
Thank you for sharing this.
I do think monoclonal antibodies and lots of the research generated for covid19 and other SARs will be greatly helpful for our community in about 2-3 years.
I'd love to hear about any details further of their experiences or to get in contact with this research team.
@MonkeyMan@Hopeful2021 I'm afraid I don't. I just found this paper online. I'm very sorry, wish I could help!
@Hopeful2021 You are most welcome.@MonkeyMan
thank you for your reply.
@MonkeyMan@Hopeful2021 You are most welcome.
What is most interesting to me in that article is the statement that "3 patients had a sustained improvement of fatigue and several symptoms for at least 12 months." Wow!
@Hopeful2021 The only time I am truly fatigue-free and clear-headed is when I use medical cannabis. But the cannabis has the unfortunate side effect of then interfering with my sleep -- it's like my brain is then on fire for days. I'm experimenting now with NSAIDs like Longvida curcumin to see if they counteract the sleep issue. Feel free to PM me if you'd like to discuss further.@MonkeyMan
Have you had periods where fatigue wasn't an issue? I'm very thankful for mine.... most are just for parts of the day.... sometimes for a week, but mainly 3-4 days.
Diabetes is one of a number of chronic conditions that have a deficiency in nitric oxide synthase among the pathology findings (nitric oxide is generated endogenously by NO synthases). Interestingly, nitrates have been found to help with neuropathic pain in diabetics.I think this will be helpful for those with pain and tingling sensations in their extremeties also. I am diabetic so it is a double advantage if it works. Lets see how it goes. Fingers crossed.
It's kinda better to just get rid of being diabetic ... the insulin causing heart disease and the deficiency in NO ... why keep a disease that's reversible ? In this community, we clamor for a cure.Diabetes is one of a number of chronic conditions that have a deficiency in nitric oxide synthase among the pathology findings (nitric oxide is generated endogenously by NO synthases). Interestingly, nitrates have been found to help with neuropathic pain in diabetics.
https://www.ncbi.nlm.nih.gov/pubmed/29565948 A Randomized, Double-Blind Study of the Effects of a Sustained Release Formulation of Sodium Nitrite (SR-nitrite) on Patients with Diabetic Neuropathy. (2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4665823/ The effect of transdermal nitroglycerin on pain control in diabetic patients with peripheral neuropathy (2015)
Do you have Diabetic peripheral Neuropathy?I think this will be helpful for those with pain and tingling sensations in their extremeties also. I am diabetic so it is a double advantage if it works. Lets see how it goes. Fingers crossed.
I found another really interesting paper by the same person. Can't say I understand all of it, but it sounds very plausible and intuitively like what's going on for me. Take a look at the abstract here:
https://www.sciencedirect.com/science/article/pii/S1568997220300823?via=ihub