Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, October 21, 2019

I'm still here

I haven't blogged since June because there's been nothing new to report.  My ME symptoms have remained steady for a long time, which is good.  I continue to be one of the very lucky ones who is still able to function at a high level compared to the average ME patient.  I feel very fortunate for that. 

In my last blog I mentioned that I was trying Cromolyn for mast cell activation and I had noticed an improvement in my gut symptoms.  It was short-lived.   I stopped taking Cromolyn in early September when I realized it probably wasn't having any beneficial effect.  I haven't experienced any drop-off in health since ceasing.  I haven't found anything else to benefit my reported mast cell activation...if that's indeed what I'm dealing with.

I continue to focus on treating SIBO because it is a distinct problem that I feel gives me a reasonable chance at treating.  On the other hand, with respect to ME as a whole, I feel like I've largely exhausted what I can try.  There's nothing left.  I'm still trying to obtain insurance approval for intermuscular IGG, but the insurance company has already denied me twice, so I am not counting on success. 


I feel fairly certain that my SIBO is caused by a dysfunctional vagus nerve, which is all tied in to ME in the first place.  My version of SIBO is the methane-producing type, which is related to irregularity.  Simply put, my guts are not moving things through the system.  When food remains in the system too long, stagnating, it leads to overgrowth of unfriendly bacteria and a class of primitive life form which is not actually a bacteria at all, but its own class called "archaea." Archaea don't respond to most antibiotics. 

There are various techniques to try to stimulate the vagus nerve and improve regularity.  I find that only doing one or two has little effect, but when I consistently do multiple vagus nerve stipulation techniques, it does start to move things along...a little.  In that vein, I take 2 mg. of Low Dose Naltrexone (LDN), which is also an immune modulator and, in theory, should help with other neuro-immune aspects of ME.  I also take cold showers and do very light yoga when I can.  These things seem to stimulate the vagus nerve. 

Meanwhile, I am going to try another round of anti-SIBO antibiotics consisting of xifaxin and neomycin.  Both together are recommended for methane-based SIBO.  I'm hoping that the results will be more long-lasting this time if I continue to focus on keeping regularity so that the conditions don't remain for the problem to return.  I am nervous though because the success rate for treating SIBO with xifaxin and neomycin is only about 40%.  Most times, it returns within a year.  If that happens, I don't have much left to try. 

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