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Hi All,
My understanding according to the CDC, PEM is a core diagnostic criteria feature of ME/CFS.
Comorbidities;
Brief history: Penicillin usage as newborn infant. Onset during emotionally stressful time period, early 20s. Pushed through although fatigue came in waves through my 20s, no doubt abetted by high stress/alcohol lifestyle. Attempted methylation protocol 2018 with high b12 dosages. After this failure, my brain/vision was somewhat blurred, estradiol/igf hormones skyrocketed and experienced high anxiety, on an ongoing basis and increasing gastro symptoms. During antibiotic treatment for SIBO with metronidazole I realised my cognitive fatigue symptoms had faded and felt like a cure may be there, although this relapsed after ceasing antibiotics. Ketogenic diet has similar effect. Prognosis here seems similar to @Avenger although I haven't found a gastroenterologist willing to test my d lactic acid levels when experiencing them and try to avoid experiencing them best as possible.
I believe the high b12 supplementation in combination with unrelated emotional / drug stress I experienced during this time messed up my microbiome further and the gut-brain axis somewhat. What has helped me most in the past few months has been a rotation of probiotics, meal timing, selenium supplementation. Ken Lassasen's microbiome model makes sense to me based on my symptoms, although I believe other mechanisms are at work which lead to the d lactate / organic acids / lps having a rougher effect on me than an average person. At my last (and first) gut test I was non-existent on e coli and lactobacillus. Supplementing these helps, however my biome adapts and I have to rotate or do something to shake it up to regain affects.
@Pyrrhus you seem super knowledgeable, any thoughts? @YippeeKi YOW !! you seem to have a lot of knowledgeable.
I'm happy to provide any data, microbiome labs that may be useful. Not seeing any specialist at the moment, currently located in southern california but may relocate this year to the UK or out of state.
My understanding according to the CDC, PEM is a core diagnostic criteria feature of ME/CFS.
- I do not have PEM. Although extreme intense exercise will tire me out and has since my onset, I can still hike/lift some light weights etc. most days however I've been losing weight since dropping the adaptogens which helped me in the past (rhodiola & cordyceps mostly).
- Sleep has occasionally been refreshing since onset, however it usually is not.
- My fatigue hits like clockwork after eating carbohydrates, I believe there has always been an element of this and I only picked up on it totally after my digestive system started becoming more turbulent, on the IBS spectrum but nothing intolerable.
- My cognitive abilities fluctuate throughout the day seemingly based on this eating.
Comorbidities;
- Psoriasis
- Ongoing HPV lesions reappearing after removal for 5+ years (interestingly, I had HSV however this seems to have abated).
- Poor resistance to viruses in general, pick up every cold going around.
Brief history: Penicillin usage as newborn infant. Onset during emotionally stressful time period, early 20s. Pushed through although fatigue came in waves through my 20s, no doubt abetted by high stress/alcohol lifestyle. Attempted methylation protocol 2018 with high b12 dosages. After this failure, my brain/vision was somewhat blurred, estradiol/igf hormones skyrocketed and experienced high anxiety, on an ongoing basis and increasing gastro symptoms. During antibiotic treatment for SIBO with metronidazole I realised my cognitive fatigue symptoms had faded and felt like a cure may be there, although this relapsed after ceasing antibiotics. Ketogenic diet has similar effect. Prognosis here seems similar to @Avenger although I haven't found a gastroenterologist willing to test my d lactic acid levels when experiencing them and try to avoid experiencing them best as possible.
I believe the high b12 supplementation in combination with unrelated emotional / drug stress I experienced during this time messed up my microbiome further and the gut-brain axis somewhat. What has helped me most in the past few months has been a rotation of probiotics, meal timing, selenium supplementation. Ken Lassasen's microbiome model makes sense to me based on my symptoms, although I believe other mechanisms are at work which lead to the d lactate / organic acids / lps having a rougher effect on me than an average person. At my last (and first) gut test I was non-existent on e coli and lactobacillus. Supplementing these helps, however my biome adapts and I have to rotate or do something to shake it up to regain affects.
- Do I count as CFS for employment purposes? Would this official diagnosis help me in anyway?
- Thoughts on attempting some kind of jadin protocol approach with antibiotics obtained online to try and trim my microflora and repopulate?
- After a rough week mentally where I've been contemplating SSRIs, I started SAM-e. It's heaven sent at the moment, but I'm afraid it may wear off. I can feel it helps A LOT after I dip from carbohydrates but I'm not expecting it to work in perpetuity. Are there any cofactors that may be helpful in prolonging it's effectiveness?
- B12 seems to help a bit, however it probably led to a further microbiome imbalance which I'm still dealing with so I try to avoid it to let less dominant species thrive. This is a pain as it's in a lot of useful things, colostrum, kefir etc. Again this is identified as harmful by ken's model.
- NAC causes me fatigue, I'm guessing it's some kind of startup symptoms. I would like to increase my glutathione levels but it's listed as the number 1 thing to damage my microbiome further from its depleted state by Ken's analysis!
- I've almost totally eliminated alcohol, eliminated caffeine, eliminated any sugar, eliminated sexual activity. I'm quite the monk at the moment but struggling to think about how to reintegrate into the world and make new friends with these limitations post-covid. I'm only 32. I'm also hesitant to get the vaccine.
@Pyrrhus you seem super knowledgeable, any thoughts? @YippeeKi YOW !! you seem to have a lot of knowledgeable.
I'm happy to provide any data, microbiome labs that may be useful. Not seeing any specialist at the moment, currently located in southern california but may relocate this year to the UK or out of state.