I definitely have PEM, does that mean I have ME/CFS

[sam.d]

Hey guys this is my first post.

I post this here because for 3 years now I definitely have been having PEM flares that go on for about 20 days after I perform even the slightest exertion. That could mean walking longer than 10 minutes or carrying a heavy grocery bag. The flare starts gently after about a day and peaks at day 8 (always exactly the same and I can't explain this). During the flare I will have extreme irritability and mood swings, fatigue, lying in bed with chills and heavy brain fog. It's basically about the same as having the flu.

When I'm not in the flare I have relatively "normal" energy-levels and sleep. The only thing I do have chronically is heavy IBS-C, SIBO and leaky gut (which started very shortly after my first flares). I basically need to follow an extremely restricted diet (with zero carbs) and make sure to not over-exert myself to keep my body & mind stable.

For these past years I've only been looking into IBS, SIBO etc but never considered looking into ME/CFS because I always assumed you'd need to be chronically (i.e. always) fatigued, whereas I only have the heavy fatigue during flares and sometimes I go weeks while avoiding flares. Because of the randomness of the flares, however, I don't have a job anymore and I am at home on wellfare.

I now want to do anything I can to figure out what's wrong with me and have been to several doctors but my bloodwork always seems to come back fairly normal and my situation remains a big mystery to every doctor I've seen (safe for the diagnosis of IBS). Thyroid and auto-immune panels come back normal. I did have Epstein Barr virus some 15 years ago and Giardia infection 10 years ago.

Do I have ME/CFS or not in your opinion and how can I get a hard diagnosis for it?
thanks
Sam

 

[PatJ]

These documents provide more information about ME and the most common symptoms:
Canadian Consensus Criteria
International Consensus Criteria

Your experience of PEM may be unusual with such a delayed peak. It sounds more like a viral reactivation than the PEM of ME. But, PEM varies quite a lot by individual so this doesn't mean it isn't related to ME.

PEM often peaks within minutes up to 24 hours later and then a person enters a slow recovery period assuming they don't induce PEM again. In my case the recovery time depends on the amount of overexerting that I do.

Your IBS, SIBO and leaky gut may be related to low stomach acid which is common in ME. Do you feel a sense of heavyness in your stomach, and sense of fatigue after eating a high protein meal? Or do you feel nauseous after taking a zinc supplement? Both can be signs of low stomach acid. There's also a baking soda test you can try. It's probably better to do the test over three days and average your results.

 

[sam.d]

Thanks @PatJ
It might seem unusual. Then again, I do realize now that I have to drink coffee all day long just to have enough baseline energy to move around the house. I also need to not make any single diet mistake or miss any of my crucial supplements, which are macrogol and magnesium to avoid constipation (constipation, which triggers super low moods/energy) and L-tryptophan. L-tryptophan gives me a much needed minimum serotonin baseline (without it, I tend to just lie in the couch and stare at the walls at best, or lie in bed totally depressed at worst).

I currently take daily:
- 10,000 IU vitamin D
- 1,000 mg L-tryptophan
- 750mg vitamin B3 + 5mg vitamin B6
- 750 mg vitamin C
- 20mg zinkpicolinate
- 2 x 450mg magnsium citrate
- 2 bags of macrogol/movicol
- Probiotics (6 billion units of mix of Lactobacillus rhamnosus GG + Bifidobacterium lactis Bb12)

I'm getting baking soda next, so I can do the stomach acid test, since I definitely recognize those symptoms you mention.
Thanks for the tip!

 

[Dechi]

Do you fit in the Canadian Consensus Criteria ? That’s the first step to know if ME might be what you have. Next you need to rule out other similar illnesses. Check the CCC for details. It’s a long and tiring process but it has to be done.

 

[Countrygirl]

In the early years of ME nearly all people react badly in various ways to red wine. You could try drinking a glass and see what happens.

 

[JES]

In the early years of ME nearly all people react badly in various ways to red wine. You could try drinking a glass and see what happens.

Just curious, why would people react badly to red wine in particular? Red wine contains a high level of antioxidants, and it seems lot of people have antioxidants as part of their CFS supplement regime.

 

[Learner1]

Sulfites
Alcohol
Arsenic

 

[sam.d]

@PatJ I did the baking soda test this morning and did not burp for 10 minutes. Will do the test again over the next days. What does this mean in the context of ME? Not sure how I should proceed.

@Dechi let's see:

1. Fatigue: yes.
2. Post-exertional malaise and/or Fatigue: very much, yes
3. Sleep Dysfunction: yes, but mostly during a PEM flare. Footnotes say that not all ME patients have this, especially when having an infectious cause for ME. I had EBV some 17 years ago and a bad case of Giardiasis 10 years ago. Not sure yet whether these are the cause.
4. Pain: Not really (yet?).
5. Neurological/Cognitive Manifestations: very much yes, and especially pronounced during PEM.
6. At Least One Symptom from Two of the Following 3 Categories:

* Autonomic Manifestations: Orthostatic intolerance (mild), irritable bowel syndrome (very advanced, cannot produce bowel movements without at least 2 daily bags of movicol/macrogol and daily 900mg magnesium); urinary frequency (yes)
* Neuroendocrine Manifestations: cold extremities (yes); intolerance of extremes of heat and cold (yes); loss of adaptability and worsening of symptoms with stress. (yes to both)
* Immune Manifestations: general malaise (yes during PEM's), new food sensitivities (yes, I can only digest a few vegetables and some fish anymore, nothing else).​

1. The illness persists for at least six months (yes)
​

Not sure if this makes it conclusive ME, since I'm not suffering from pain per se. But then again I have been living within a very strict energy envelope for years now. I have no job so I avoid all stress and I stay as sedentary as I can to avoid PEM triggers. I leave the house only once every 2 weeks for grocery shopping and even then I'm extremely careful about carrying weight. If I wouldn't take these measures I would be a constant total bed-bound wreck.

ps this long and tiring diagnosis process. Which one are you referring to exactly (link?). I want to make sure I'm on the same page.

I have already ruled out hypothyroidism, Hashimoto's, Lyme's and colon malignancy.

@Countrygirl YES! Haven't been able to touch red wine for 5 years now. In the end, even a single glass would produce a hangover the size of which I used to have in college after drinking all night long.

 

[Learner1]

It really doesn't matter what its called. Even if you have ME/CFS, which it sounds like you do, you'll find there are different subsets of patients with different issues to address on their journey to getting well. We may share the same symptoms but may need to address different root causes, though we have other things in common.

Your gut is a red flag. It is where you eliminate toxins you've ingested as well as toxic products your body makes. If these aren't eliminated properly, they can get reabsorbed by your body with very negative consequences. Your liver, which is involved in metabolixing toxins can be compromised as well.

The biggest role for the gut is in properly digesting food. Various bacteria living there have different jobs to do. If you are missing certain strains of bacteria, you may not be absorbing certain nutrients your body needs, starving your biochemical pathways, which can in some cases lead to organ failure (lack of magnesium or potassium can cause heart failure, for example). B12 needs 3 separate processes working correctly, plus the right bacteria, to be processed and absorbed into your bloodstream. And some people have fungi, like candida, or parasites interfering as well.

Then, there's "leaky gut." Food allergies, gluten sensitivity, etc. can loosen the junctions between the cells in your gut lining and undigested food particles can get out into your bloodstream, activating your immune system causing inflammation and more food allergies.

And then there's the ability of each organ to do its job. Your stomach must be producing stomach acid, your pancreas needs to make digestive enzymes, gall bladder producing bile, and liver processing things correctly.

Focusing on identifying and solving these problems and replenishing nutrient deficiencies may get you a long way toward wellness. ME/CFS scientists like Maureen Hanson and Chris Armstrong have found abnormal gut microbiomes in ME/CFS patients.

A functional medicine doctor can be quite helpful. Doing a stool test like uBiome, DiagnosTechs GI Map, or Genova Diagnostic GI Effects can be a start. Cyrex Labs has some good tests for gluten and related food allergies as well as some for autoimmunity and neurological problems.

Changing your diet, drinking adequate eater, taking probiotics and digestive enzymes, bitters to stimulate gall bladder function, being nice to your liver, and healing your gut wall with glutamine can all be components of a good program.

If you can't find a good doctor, The Food Intolerance Bible by Anthony Hayne has a lot of self quizzes to diagnose some of these issues and gives instructions for attacking problems found.

And a Genova Diagnostics NutrEval test can go a long way to helping you find and attack nutrient deficiencies.

You may well have other issues worth addressing, but many have come a long way by improving gut health and nutritional status.

 

[justy]

Sounds like M.E to me. A lot of us also have SIBO, IBS gut dysbiosis etc. Some of us dont have significant pain.

 

[PatJ]

I did the baking soda test this morning and did not burp for 10 minutes. Will do the test again over the next days. What does this mean in the context of ME? Not sure how I should proceed.

Once I realized I had low (or no) stomach acid I started taking betaine hcl capsules. I found that a regular dose was too much for my stomach (heat and mild pain), probably because the lining of my stomach had thinned out from lack of stomach acid over a long period of time. So I found some 325 mg capsules that were half the usual dose. I took one with each meal, then increased the dose after a week, then kept increasing as my stomach lining built up.

I've read that the stomach lining will thicken in the presence of increased acid so I had to gradually increase the dose while this happened. I also found that betaine hcl with pepsin worked much better than without pepsin.

Now I take some betaine hcl with pepsin with almost every meal (anything that contains protein). I've found that I need one 650 mg capsule for every four grams of protein.

I've also tried digestive bitters to naturally induce stomach acid secretion before a meal. They work, and confirm that my stomach can produce its own acid, but for some reason won't produce it naturally in the presence of food. I continue to use betaine hcl because I can control the amount of acid better than I can with bitters. Bitters can lead to overproduction of acid and a lot of discomfort.

Since I'm talking about food and digestion I'll mention that if you have a lot of fatigue after a meal then you might be experiencing post-prandial hypotension (low blood pressure after eating). I have very low BP to start with, so eating a large meal can drop it even further. Very small meals at regular intervals avoid the extreme fatigue after eating. In my case I eat ten small meals per day, which also helps to control my regular low blood sugar episodes.

Not sure if this makes it conclusive ME, since I'm not suffering from pain per se.

Many of us don't have pain. I only get muscle pain ('coathanger' pain) if I push outside my energy envelope.

I have already ruled out hypothyroidism, Hashimoto's, Lyme's and colon malignancy.

Hip has created a detailed Roadmap for Testing and Treatment.

 

[PatJ]

I forgot to add that betaine hcl with pepsin was the first supplement to make a major difference for me. It's now one of my indispensible supplements. After several months of using it my stomach and digestive problems cleared up.

An interesting book about stomach acid is: Why stomach acid is good for you by Jonathan Wright, M.D.

 

[sam.d]

@Learner1 thanks so much for elaborating on all this. I look forward to starting a comprehensive protocol for my gut now. I had tried some things left and right over the years, but never a structured program. I have always consulted classic GP's about my issues (to no avail). I will now seek out a function medicine doctor as you suggest.

Cheers @PatJ. I will definitely try Betain HCl + pepsin now after reading up on things. I've heard good things about the book: "The Gut Health Protocol", which is supposed to cover all bases when it comes to intestinal issues. I want to go through that next (unless someone specifically warns against it of course).

ps had indeed just discovered Hip's roadmap. Excellent resource.
I wonder though if there is an all encompassing resource out there that gathers all this information plus the anecdotal evidence such as what you've been telling me about betaine Hcl + pepsin helping you out so much. Stuff like this doesn't seem to be on the roadmap (probably by design)? Would be great to have a totally comprehensive flowchart out there which covers all possible things you should try.

 

[Learner1]

Though the roadmap has a lot of useful information, there's also a lot missing.

I've gotten a lot of help from finding and treating my infections and working on my immune system, but I wouldn't function as well as I do without working on my gut, as well as being on a comprehensive mitochondrial and nutritional support program, supporting my adrenal, thyroid and sex hormones, and getting oxygen into my system. I also got rid of arsenic, cadmium, lead, mercury, and platinum toxicity, eat a low carb, organic Paleo diet and exercise carefully to promote mitochondrial biogenesis and brain derived neurotropic factor.

Other people use a lot of various drugs for various problems. There doesn't seem to be a single flowchart.

One can waste a lot of time and money guessing at problems. The value of a good functional medicine doctor is to gather the scope of your problems, then prioritize, what to tackle in which order to get you better faster. Randomly trying treatments, no matter how good they are, may not be appropriate for you, and can occasionally get you into serious trouble, if not just being a wasted effort.

Keep learning and be persistent!!

 

[PatJ]

all encompassing resource

The closest I have ever seen is Erica Verrillo's CFS Treatment Guide 2nd edition. It's inexpensive and stuffed with useful information.

 

[Dechi]

@sam.d you definitely fit the criterias. Pain is not mandatory. A lot of PWME don’t have pain. Most have headaches, or migraines, or paresthesia, which are types of pain.

As for ruling out other diseases, there is a section in the CCC about it. I believe @Hip also has put together a very nice document to help you with that.

 

[Learner1]

The IOM criteria was defined after much investigation by experts, taking into account all previous criteria. This walks you through it.

http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_DiagnosticAlgorithm

 

[hamsterman]

Hey guys this is my first post.

I post this here because for 3 years now I definitely have been having PEM flares that go on for about 20 days after I perform even the slightest exertion. That could mean walking longer than 10 minutes or carrying a heavy grocery bag. The flare starts gently after about a day and peaks at day 8 (always exactly the same and I can't explain this). During the flare I will have extreme irritability and mood swings, fatigue, lying in bed with chills and heavy brain fog. It's basically about the same as having the flu.

When I'm not in the flare I have relatively "normal" energy-levels and sleep. The only thing I do have chronically is heavy IBS-C, SIBO and leaky gut (which started very shortly after my first flares). I basically need to follow an extremely restricted diet (with zero carbs) and make sure to not over-exert myself to keep my body & mind stable.

For these past years I've only been looking into IBS, SIBO etc but never considered looking into ME/CFS because I always assumed you'd need to be chronically (i.e. always) fatigued, whereas I only have the heavy fatigue during flares and sometimes I go weeks while avoiding flares. Because of the randomness of the flares, however, I don't have a job anymore and I am at home on wellfare.

I now want to do anything I can to figure out what's wrong with me and have been to several doctors but my bloodwork always seems to come back fairly normal and my situation remains a big mystery to every doctor I've seen (safe for the diagnosis of IBS). Thyroid and auto-immune panels come back normal. I did have Epstein Barr virus some 15 years ago and Giardia infection 10 years ago.

Do I have ME/CFS or not in your opinion and how can I get a hard diagnosis for it?
thanks
Sam

You sound a bit like I did. I feel like I am chatting with myself from the past.

I would say... almost definitely... you have SEID (Systemic Exertion Intolerance Disease)... ie ME. I didn't have IBS, I had Cronh's diseases... but the problem was... I kept thinking that if I managed the Cronh's... that the crashes would dissapear. It wasnt until 5 years later... my endocrynologist set me straight... The ME really is its own animal... and what causes my Cronh's to flare-up is not at all what causes ME to flare-up. My Cronh's is mostly in remission at the moment... but like everyone else here... if I exert myself... I get PEM.

Remember that for the most part... there is still no blood work that can identify ME. There is only the PEM to identify it. That is why the 24 hour CPET test is the only way to truly test for it.

I also had the exact same issue with the randomness of the flares that made it impossible for me to work. One day I was feeling ok.. and was programming away (I'm a programmer )... the next day... I was in a dark room shaking... thinking that I never wanted to speak with the outside world again. This randomness is what killed me. But the good news is... once you cure the randomness... you can get some sanity back.

I would suggest Pacing with a Heart-rate monitor. Also... I would stop any and all social gatherings. (This is a toughie... but talking can be worse than walking). Once you do this... you can start to fine-tune your life.... there are lots of great strategies that help.

 

[sam.d]

@hamsterman thanks! I'm in the same boat and recognize what you say (the randomness etc). It's only been a week since I "discovered" ME/CFS. Until last week, the physical degradation which I had been suffering from for more than 20 years was just a big mystery. I realize a lot of people on here are experts at ME/CFS and still haven't been able to achieve remission, which should really make me more pessimistic. Instead, I haven't been this excited and happy in years. That will probably subside in time, but it's been a blast discovering all you people who are finally pulling the curtains off of my illness. Not to mention discovering all kinds of symptomatic treatments which where hitherto unbeknown to me.

But yeah, as far as timeline, I've quit all social life almost 2 years ago, I've stopped leaving the house about 9 months ago (except for grocery shopping once every 2 weeks). So I've been extremely carefully pacing to combat randomness.

 

[JeanneD]

@sam.d That sounds like ME to me, but other conditions can produce some of those symptoms. What you need, imo, is a thorough work-up and diagnosis by an ME specialist if at all possible. It would be tragic if you had a treatable condition that went undiagnosed and you suffered unnecessarily for years. Often GPs miss diagnoses in people with ME-like symptoms because there are so many things going wrong. Or perhaps I should say they often misdiagnose. Either way, a GP is not usually the best first stop for a diagnosis.

Since you are in Belgium, I would suggest you go to Kenny DeMeirleir in Brussels. At this point you don't need to concern yourself with whether or not you like his treatment plan. He does thorough testing and will give you a diagnosis. At that point you'll have some idea how to move forward. Maybe that will be with DeMeirleir, maybe not. You don't have to decide that now.

If you have treatable conditions that are not ME, you can find doctors who will treat them. If you do have ME (which sounds likely), you'll have lab data and can start researching how best to get treatment for your symptom set. Since there is no cure for ME, treating symptoms is our current option. As many of us can tell you, getting symptoms under control (gut, sleep, autonomic dysfunction, immune dysfunction, etc) can make a huge difference.

Keep us posted on how you are getting along.