Do I really have CFS Diagnosis? Where do I go from here?

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Hi All,

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.

  1. Do I count as CFS for employment purposes? Would this official diagnosis help me in anyway?
  2. Thoughts on attempting some kind of jadin protocol approach with antibiotics obtained online to try and trim my microflora and repopulate?
  3. 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?
Miscellaneous
  • 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.
 
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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).

Personally I "had" a chronic epstein barr version of ME which did not come with classic PEM symptoms for many decades wherein I was considered "mild". (see activity categories around here). I believe I may have encountered a second- "something" which intensified my illness and made it much worse with classic PEM.

So I hiked for a living, about six months a year, for a long time. There would be "relapses" wherein I felt like I had a low grade fever and gland issues, and low energy during those flairs. But I got to the top of the mountain, eventually.
 
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Hi @cogent_thought ....

I've given a quick read-thru (going thru a little period of foggy cog and limited energy and focus, so I wanted to get an overview within the limits of my current ability), ad will come back to it when I have better command of what's left of my brain ....

Some thoughts:

  • Try to avoid SSRI's if at all possible. Any benefit will probably be temporary, and the side effects, coupled with this illness, can be devastating. Almost all SSRI's are anticholinergics, tho Drs will tell you that they're very mild (Drs love to prescribe these .... it gives them something to do without requiring anything as demanding as research), but if you couple their effects with the already not inconsiderable cognitive deficits almost all of us are struggling with, the results can be pretty unpleasant. And that's not even counting the many other unpleasant side effects of SSRI's.
  • Like you, I found the effects of B-12 sufficient to make me drop it after some 15-plus years of taking it. I also had to dump all of the B vits for the same reason. After which, all the supps I'd taken without issue for my entire adult life went out, and I've only recently been adding them back in, in very small careful doses, and one at a time so I can tell which is doing what. B-12 has a minimal effect on the gut microbiome, so I don't think it was that. It seemed more connected to CNS, neurotransmmiters, and the brain generally.
  • I also had to eliminate alcohol, sugar, and caffeine, along with anything excitotoxic, and wound up living for about 2 years on water and mozzarella string cheese, and rice cakes with a little Greek yogurt as a spread, and about a 1/3 daily dose of the least damaging multi vit I could find. It was a disal periodl, but it allowed me to stabilize....
  • Next to the brain, the enteric nervous system, sometimes called the second brain, is the touchiest in terms of messing with it. Probiotics have been much touted in the last decade or so, but as a cure-all they're deeply limited, and screwing with your native bacteria can cause unwanted effects. There are certain strains of various bacteria that can be helpful, because many of us have them as our commensal bacteria, but delving into that is a deep and long google search, and finding those specific strains (not the bacteria itself, but the strain of that bacteria, designated by a code of letters and numbers, that has been most heavily researched and vetted) is a real challenge.
  • Am unsure about glutathione damaging the microbiome. It's actually been used to repair a leaky gut, among other gastro things. Keep in mind that what worked for one of us and is mentioned as a Holy Grail may not work for the rest of us. Trust what your body tells you. And in terms of messing with your gut, SSRI's are stellar ...
  • NAC knocked me on my butt, pretty hard. I haven't tried it since. I believe that there are some other add-ons that might make it more tenable, but right now I cant think of them.
That's the best I can do right now. I hope it helps ....
 

wabi-sabi

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We can't really diagnose you here, but it seems like a good idea to pursue a medical work up before deciding on chronic fatigue syndrome. The weight loss and sugar eating issues you describe are concerning and could go with any number of conditions other than ME/CFS.

PEM is an important component of ME/CFS and it does cast some doubt on the idea that you have ME/CFS if you don't have PEM. That being said, it can start off quite mild, as Rufous said. My two cents is to see a medical person and get all the usual tests for diabetes, depression, and stomach issues to start. Not that you can't have all of these at once, but other issues are more treatable than ME/CFS and it sure is nice to have something treatable! For example, you could have GI issues leading to blood sugar fluctuation issues that lead to cognitive problems and fatigue and not have ME/CFS at all. I just made that up as a hypothetical, just to say lots of things are possible with your symptoms and you need some real help in diagnosis, not just us here.

A diagnosis of ME/CFS is still stigmatizing enough that it probably won't benefit you, although that is quite a bit of cynicism talking on my part. And it really won't benefit you if it's the wrong diagnosis.
 
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I guess this is a grey area to some extent. For example we could say I had ME from the age of 12/13 until today with a period of ten years where I had few symptoms, if we go off the able to excercise but struggle to produce max energy idea.

Whereas the PEM only kicked in 5 years ago. So you could just be pre-ME I guess. However I do think there are dozens of other things it could be. Nutritional defiencies and the like come to mind first because you're not getting PEM and your symptoms seem to be wax and wane. Things like b12, copper, iron levels, vitamin D status, thiamine (unlikely to be deficient in this). Then there's malabsorption of foods or inability to use what already exists. Maybe a methly trap is the problem. Hard to know really. But lots of that can be checked with blood tests if you've not had them.
 

Alvin2

The good news is patients don't die the bad news..
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We have no diagnostic test so its a diagnosis of exclusion and the CCC or ICC. And excluding all rare diseases is impossible. PEM is not always easy to delineate, mine is relatively mild and i was so used to it that i didn't recognize it as a major symptom except in retrospect.

That said have you been checked by competent docs for the common diseases or rare diseases?

As for microbiome and B12, not likely causes of ME/CFS. Have you been checked for diabetes, hypoglycemia and thyroid issues?
 
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