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, August 27, 2018

On an upswing. Speculating about the reasons.

My health has been above-baseline almost all summer.  For that matter, if we don't count the SIBO symptoms and neurological symptoms (most likely, small fiber neuropathy)—a big "if"—I seem to have been on an  upswing since about December or January.  Starting in or about June, the neuropathy and SIBO improved, leading to even greater upswing.  Just as the downswings (the crashes) are sometimes difficult to explain, so too are the upswings.

Perhaps I hit upon the right combination of supplements for me by sheer luck.  I'm frequently adjusting my medication and supplements at the recommendation of doctors and based on new and changing symptoms.  Right now my med./supp. routine is

  • 4 Equilibrants per day on weekdays only (pause on weekends for "pulsing" the dose), plus;
  • T3 and T4 for hypothyroidism;
  • Digestive enzymes with every meal (for SIBO); 
  • Allimax (a garlic extract) with every meal (for SIBO); and 
  • Dihydroquercetin (recommeded by Dr. C) as needed for lactic acid buildup and/or histamine.  


I eliminated a couple supplements at around the time the neurological symptoms improved, including my multivitamin which contained significant amounts of B12 methylcobalamin.  I may have been over-methylating on the multivitamin.  The other supplement I eliminated at that time was phosphatidyl choline (PC).  I still can't tell if PC helps or hurts—I get mixed results.

I have been occasionally taking caffeine mints (the caffeine never hits the stomach, so it is gentler on the GI tract), which also contain B12 in the form of cyanocobalamin.  Based on my genetic profile, cyanocobalamin may be the better form of B12 for me.  It does not cause me to over-methylate. (I realize the practice of taking caffeine in any form by a PWME is considered risky by some.  I'm taking it cautiously.)

Also, summers are  usually better for me, perhaps because there are fewer colds, flues and illnesses floating around and perhaps because moderate amounts of natural Vitamin D from the sun seems to serve me well.  But recent summers have not been as good as this one.

The strong shortness of breath (SOB) that was plaguing me in recent years also seems to have abated.  I suspect it has something to do with the change in my diet required by SIBO.  Something in my previous diet may have been triggering histamine and allergic-like reactions which seemed to lead to SOB and sniffles.  I still occasionally experience the SOB, but nothing like before.  I think I know now what foods to avoid, particularly grapefruit, avocado, cashews, coffee, dark chocolate and large amounts of kale.  At the same time, now when I do try small amounts of those problematic foods, the reaction is nothing like before.  Something else seems to have helped abate the SOB and post-nasal drip.  When I do seem to have an overflow of histamine, dihyrdoquercetin helps.  I previously reported that dihydroquercetin did not help, but I don't think I was paying close enough attention at the time.  It's a subtle difference, but I do believe it is real.     

Unfortunately, this improvement may have a potential dark side.  Throughout this period of increased functionality, the tenderness and swelling in the lymph nodes in my neck seems to have worsened and become more constant.  I don't know what this means and I plan to discuss it with my doctor soon, but it tends to temper my enthusiasm about the upswing. 

4 comments:

  1. Hi, Patrick -

    Sorry I haven't been by your blog in ages - just overloaded and not enough time to visit blogs!

    I'm thrilled to hear you are doing well & had a good summer! That's great that you are finding what works for you.

    Re: the swollen lymph nodes and the typical winter downslide, what helped us was immuno-modulators - treatments that help to normalize the immune system. Three things in particular have made a HUGE difference for my son and I - no more sore throats and no more virally-induced crashes in winter! - including: LDN, inosine, and glutathione injections/nasal spray. Here's more info:

    http://livewithcfs.blogspot.com/2017/10/throwback-thursday-immune-dysfunction.html

    I hope your improved state continues! Nice to check in on you :)

    Sue

    Living with ME/CFS

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    1. Hi Sue, nice to hear from you again! That's great to hear that you and your son have found a huge difference in the immunomodulators you use. I too have had success with them, especially Equilibrant (oxymatrine). LDN is the one I've been off and on. Sometimes it seems to help a little, and sometimes I can clearly tell that it is causing neurological inflammation so I stop. I can't figure out why it has different effects at different times. I have only done oral liposomal glutathione, but not the injections or nasal spray. I may have to try that. I didn't notice a difference with inosine in the past, but I might try again.

      Thanks again for stopping by. It was nice to hear from you.

      -Patrick

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  2. Glad to hear about your general upswing! It is odd that this is concurrently accompanied by tender lymph nodes. They only become so during periods of increased immune activity; really wonder what the root cause is while you're improving in other ways.
    Wish you the best with continuing recovery!!

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    1. Thank you so much. I'm wondering that too!

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