Does anyone think they could have something else?

[Gingergrrl]

I believed for three years (as did my doctors) that ME/CFS was my diagnosis and would have sworn on a bible (at that time). I no longer believe it to be correct, even though I was severely ill and share many symptoms with ME/CFS. My doctor did blood tests in 2014 and I matched with his other patients on what he considered to be the closest things to a bio-marker (at that time): very low NK cell functioning, extremely high IgM EBV titers, and non-existent vasopressin.

In spite of that, my symptoms kept going in a different direction and I did not have major fatigue, PEM, cognitive symptoms, or flu-like symptoms. I did have severe muscle weakness, breathing weakness/shortness of breath and restrictive pulmonary functioning on tests, confirmed POTS and severe Dysautonomia, and later developed MCAS. My diagnoses at this time are: Hashimoto's (autoimmune thyroiditis), Autoimmune POTS, MCAS (in remission) and B-Cell Driven Autoimmunity with a bunch of autoantibodies that do not fully match with any disease but match partial criteria for LEMS and a few other illnesses.

I am greatly improving with treatment, which is the most important thing, but I have to admit that there are days it kills me not to have an official "label". We know it is autoimmune (my case- not everyone!) which has been very helpful in guiding my treatment vs. initially I was trying a series of random things that either had no effect or made me worse.

 

[Rossy191276]

I believed for three years (as did my doctors) that ME/CFS was my diagnosis and would have sworn on a bible (at that time). I no longer believe it to be correct, even though I was severely ill and share many symptoms with ME/CFS. My doctor did blood tests in 2014 and I matched with his other patients on what he considered to be the closest things to a bio-marker (at that time): very low NK cell functioning, extremely high IgM EBV titers, and non-existent vasopressin.

In spite of that, my symptoms kept going in a different direction and I did not have major fatigue, PEM, cognitive symptoms, or flu-like symptoms. I did have severe muscle weakness, breathing weakness/shortness of breath and restrictive pulmonary functioning on tests, confirmed POTS and severe Dysautonomia, and later developed MCAS. My diagnoses at this time are: Hashimoto's (autoimmune thyroiditis), Autoimmune POTS, MCAS (in remission) and B-Cell Driven Autoimmunity with a bunch of autoantibodies that do not fully match with any disease but match partial criteria for LEMS and a few other illnesses.

I am greatly improving with treatment, which is the most important thing, but I have to admit that there are days it kills me not to have an official "label". We know it is autoimmune (my case- not everyone!) which has been very helpful in guiding my treatment vs. initially I was trying a series of random things that either had no effect or made me worse.

Hi @Gingergrrl...As always I read about your case and it is so similar to mine in many symptoms except I definitely get severe post exertional crashes that affect me physically but not mentally. I also get confused with symptoms as like you it seems rare to find people who have severe muscle and breathing weakness like us on forums but when I have read about the original ME definitions muscle weakness/fatiguability was the main symptom and my doctor who has been treating ME for 30 years says that shortness of breath is reasonably common. All very confusing...

I said I would let you know when I had found out about my auto-antibody testing history from hospital and I now have it. It looks like I have had all antibody testing that I have seen you mention except for the calcium channels. + i have had myasthenia gravis, myositis profile done + the cell trend and have been negative for all. Although one doctor suggested that I get a trial of IVIG it looks like it won't happen because I don't have any positive autoimmune results at this point.

The most interesting finding for me has been on the muscle biopsy which found severe Type II muscle atrophy which has been linked in research to metabolic/nutritional causes and I also have low blood protein, high ferritin, and low glycogen in muscle tissue. My next exploration will be whole exome genetic testing to explore Mitchondrial disease and I am very interested in Robert Phairs Metabolic Trap hypothesis as I crashed for first time when I was on a keto type diet and exercising a lot and he seems very interested in this sort of onset.

 

[wastwater]

Genetic white matter disease is something I’m looking at in my case

 

[Ravn]

It's very reasonable to wonder about the possibility of misdiagnosis. According to these two articles it's very frequent indeed.
From the UK: http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/
From Australia: https://meaustralia.net/2016/05/26/australia-2-in-5-cfsme-diagnoses-wrong/

Around 38% of Australians diagnosed with chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME) do not meet the Fukuda chronic fatigue syndrome definition used by the US government. More than two-thirds don’t meet the International Consensus Criteria for Myalgic Encephalomyelitis (ICC ME). Australia has no national clinical guidelines but patient organisations endorse the ICC or earlier version (Canadian Consensus Criteria).

If you're not sure of your own diagnosis it's worth having a look at the actual study the Australian article is based on, especially some of the tables comparing symptoms in patients fitting - or not - various diagnostic criteria.
Study is here: https://www.dovepress.com/epidemiol...memyalgic-peer-reviewed-fulltext-article-CLEP

 

[Martial]

I believed for three years (as did my doctors) that ME/CFS was my diagnosis and would have sworn on a bible (at that time). I no longer believe it to be correct, even though I was severely ill and share many symptoms with ME/CFS. My doctor did blood tests in 2014 and I matched with his other patients on what he considered to be the closest things to a bio-marker (at that time): very low NK cell functioning, extremely high IgM EBV titers, and non-existent vasopressin.

In spite of that, my symptoms kept going in a different direction and I did not have major fatigue, PEM, cognitive symptoms, or flu-like symptoms. I did have severe muscle weakness, breathing weakness/shortness of breath and restrictive pulmonary functioning on tests, confirmed POTS and severe Dysautonomia, and later developed MCAS. My diagnoses at this time are: Hashimoto's (autoimmune thyroiditis), Autoimmune POTS, MCAS (in remission) and B-Cell Driven Autoimmunity with a bunch of autoantibodies that do not fully match with any disease but match partial criteria for LEMS and a few other illnesses.

I am greatly improving with treatment, which is the most important thing, but I have to admit that there are days it kills me not to have an official "label". We know it is autoimmune (my case- not everyone!) which has been very helpful in guiding my treatment vs. initially I was trying a series of random things that either had no effect or made me worse.

I remember seeing posts from you over the years. I am glad you have more of an answer now and are improving so much.

 

[Martial]

Does anyone know of another disorder in which PEM is a symptom?

PEM is in different long term illnesses and auto immune diseases, from my understanding. I think the difference in CFS/ME PEM is the amount of delay in which it happens. I don't remember exactly how it was written but a poster here with a picture of Albert Einstein named Alex had talked about it.

 

[Martial]

I don't find hope especially useful. I get my hopes up every time I have a remission, I start making plans for the future, and it crashes down. Eventually the 'ups' become 'downs' because I know how they end and that they do not last (I personally am more likely to push harder and overdo it when I have hope, which only makes the end of an upswing that much worse).

I prefer to live one day at time, as no amount of fantasizing about a cure (or keeping hope) changes the reality that each day has its own limits that cannot be predicted by how the day before it was. The days I am not making plans for tomorrow are the days that I am better able to rest and not spend futile energy cycles on worry or hope.

I am really and truly OK with reality, I accept my fate. Today is a rest day, who knows what tomorrow brings. I used to say a resounding f-you to my disease every day only to find it says f-you back and it has bigger teeth.

I get that, I don't mean to say fight against your illness though. Just that we never know what the future holds, there seems to be research done every day. And with trying different treatments sometimes some things might help quite a bit. Don't over do things, hope or not. But I would hope everyone gets the right answer and the right help eventually.

 

[Snow Leopard]

My "something else" isn't any more treatable than ME unfortunately...

 

[glockola]

Why do we call it ME? Do we have evidence that most people with CFS have inflammation in the brain and nervous system? no we don't. I think CFS is a much more fitting term. Maybe some individuals are suffering from something like ME and the symptoms overlap with CFS, but lets not say ME/CFS like it is the same thing.

I think something can go wrong with the body for whatever reason, infection, disease, hormones or whatever. Some diseases are subclinical and are difficult to diagnose. Sometimes the doctors do not know where to look or do not have the tools needed. Many biomarkers missing and instruments for diagnosis. The research in many areas are missing.

 

[Darran321]

I have been told I have CFS by doctors I always find it strange my only symptoms are severe head pain and pain in my neck glands which are brought on by exercise very strange but it’s ruined my life not improved in 3 years

 

[BadBadBear]

I think I likely had herpes meningoencephalitis. I had every symptom except seizure. I had wondered if I REALLY had ME, but the more I learn about the different herpes associated encephalitis versions, the more I think I must have had one of them.

 

[Gingergrrl]

Hi @Gingergrrl...As always I read about your case and it is so similar to mine in many symptoms except I definitely get severe post exertional crashes that affect me physically but not mentally.

Your case is definitely one of the most similar to mine (on PR) and my symptoms were like yours prior to my treatment except for the post exertional crashes. I definitely have POTS reactions which require a recovery time BUT the reactions are instant and never delayed.

I also get confused with symptoms as like you it seems rare to find people who have severe muscle and breathing weakness like us on forums

I agree and it was not until I joined two groups (one for people who have the CA+ Autoantibody and one for people with LEMS) that I found other people with my symptoms. Many also had POTS, but none of them that I recall had MCAS.

but when I have read about the original ME definitions muscle weakness/fatiguability was the main symptom and my doctor who has been treating ME for 30 years says that shortness of breath is reasonably common. All very confusing...

That is confusing, I agree.

I said I would let you know when I had found out about my auto-antibody testing history from hospital and I now have it. It looks like I have had all antibody testing that I have seen you mention except for the calcium channels. + i have had myasthenia gravis, myositis profile done + the cell trend and have been negative for all.

I don't think I have ever been tested for myositis. Do you know which blood tests it involves? I was negative for MG and MuSK autoantibodies but positive for 7/9 Cell Trend (plus the two Hashimoto's Abs, N-type CA+ Channel, and anti GAD65).

I forgot, can you get tested for anti GAD65 and for the paraneoplastic autoantibodies (which would include the CA+ Channel Abs)? Is your ANA itself positive?

Although one doctor suggested that I get a trial of IVIG it looks like it won't happen because I don't have any positive autoimmune results at this point.

I wish you could try IVIG to see if it helped you b/c it can help without knowing the diagnosis in autoimmunity.

My next exploration will be whole exome genetic testing to explore Mitchondrial disease

That is interesting, and I never did any testing for Mito Disease, but am curious what you find. I would think Mito disease could have post exertion crashes like PEM but do not know for sure.

I remember seeing posts from you over the years. I am glad you have more of an answer now and are improving so much.

Thank you @Martial and I remember your posts as well and hope you are doing better, too.

PEM is in different long term illnesses and auto immune diseases, from my understanding. I think the difference in CFS/ME PEM is the amount of delay in which it happens. I don't remember exactly how it was written but a poster here with a picture of Albert Einstein named Alex had talked about it.

I bolded your quote above and you are referring to @alex3619. That is interesting (re: PEM) and I was not sure if it was in any other illnesses. I know many people (in real life) with autoimmune diseases but do not know anyone (outside of the many great people I have met on PR) who has ME/CFS. One of my best friends has lupus but is now in remission. She was very ill, and at one point had to get both knees replaced due to the progression of the disease, but I never saw her to have anything that resembled PEM and she remains one of the most energetic people I have ever known!

 

[Isaiah 58:11]

I am probably wrong, but here goes: I think ME is a *thing* (obviously) and all the other things are add-ons, like sprinkles and peanuts on a frozen yogurt.

I got food poisoning while coming down with flu and that was my onset. Then I got a tick bite, then I lived in mold, then I took a floroquinolone, then...

My diagnoses include:
CFIDS
MCAS
POTS
CIRS
SIRS
EDS
Encephalitis and/or autoimmune encephalomyelitis
Neuropathy
RA
Immune dysfunction (deficient in some places overactive in others)
Polymyositis
Mitochondrial dysfunction (unspecified)
[ETA] Disordered ketone metabolism
And a whole lot more! (Now including positive PCR testing for Borrelia and Bartonella.)

But, none of these things were apparent before onset. One of the doctors said I have always had EDS, MCAS, and some level of toxicity from HLA genetics, but, except for having to use special laundry detergent, I was basically normal.

So, I think ME sets the ball rolling and we acrue these other diagnosable things, but underneath it is still the ME insult and most of us aren't likely to get more than some variable symptomatic improvement (thank goodness for it!) by chasing these other things that happened as downstream effects.

I guess my point is, yes, we may have things other than ME, but that doesn't mean we don't still have ME.

:thumbdown: i have no idea if I have saod anything worthwhile. I am going to go have more coffee.

 

[Martial]

I am probably wrong, but here goes: I think ME is a *thing* (obviously) and all the other things are add-ons, like sprinkles and peanuts on a frozen yogurt.

I got food poisoning while coming down with flu and that was my onset. Then I got a tick bite, then I lived in mold, then I took a floroquinolone, then...

My diagnoses include:
CFIDS
MCAS
POTS
CIRS
SIRS
EDS
Encephalitis and/or autoimmune encephalomyelitis
Neuropathy
RA
Immune dysfunction (deficient in some places overactive in others)
Polymyositis
Mitochondrial dysfunction (unspecified)
And a whole lot more! (Now including positive PCR testing for Borrelia and Bartonella.)

But, none of these things were apparent before onset. One of the doctors said I have always had EDS, MCAS, and some level of toxicity from HLA genetics, but, except for having to use special laundry detergent, I was basically normal.

So, I think ME sets the ball rolling and we acrue these other diagnosable things, but underneath it is still the ME insult and most of us aren't likely to get more than some variable symptomatic improvement (thank goodness for it!) by chasing these other things that happened as downstream effects.

I guess my point is, yes, we may have things other than ME, but that doesn't mean we don't still have ME.

:thumbdown: i have no idea if I have saod anything worthwhile. I am going to go have more coffee.

I dont know the difference in time your original diagnosis or being ill and the lyme disease /tick bite find. But I would highly recommend you treating the lyme disease in the least.

You dont want an infection like that to just be there without doing anything to treat it. I would suggest something like the Buhner protocol which is herbal treatment of lyme disease and co infection. If pharnacutical antibiotics isnt something you would like to do.

A lot of your diagnosises are strong symptoms in which lyme disease can cause, and if anything treatment can help with whatever could be associated with the lyme and co infection symptoms it should help your overall health for the better . People get very, very sick with that illness.

 

[Isaiah 58:11]

I dont know the difference in time your original diagnosis or being ill and the lyme disease /tick bite find. But I would highly recommend you treating the lyme disease in the least.

You dont want an infection like that to just be there without doing anything to treat it. I would suggest something like the Buhner protocol which is herbal treatment of lyme disease and co infection. If pharnacutical antibiotics isnt something you would like to do.

A lot of your diagnosises are strong symptoms in which lyme disease can cause, and if anything treatment can help with whatever could be associated with the lyme and co infection symptoms it should help your overall health for the better . People get very, very sick with that illness.

I don't want to hijack the thread, but I will clarify that I think I was susceptible to the tick borne infections because of the prigonal insult.

Yes, they were within months of each other.

I took antibiotics for months (They make me feel so much better! Even the ones not known to be anti-inflammatory.) and even had 4 weeks of IV antibiotics (nearly total remission - ETA still had PEM, though) but every time I have relapsed 2-3 weeks later. I agree that it looks like I should pursue treatment, but ran out of $.

 

[notmyself]

Why do we call it ME? Do we have evidence that most people with CFS have inflammation in the brain and nervous system? no we don't. I think CFS is a much more fitting term. Maybe some individuals are suffering from something like ME and the symptoms overlap with CFS, but lets not say ME/CFS like it is the same thing.

I think something can go wrong with the body for whatever reason, infection, disease, hormones or whatever. Some diseases are subclinical and are difficult to diagnose. Sometimes the doctors do not know where to look or do not have the tools needed. Many biomarkers missing and instruments for diagnosis. The research in many areas are missing.

Could'nt agree more! CFS is a category of different diseases that share similar symptoms and are hard to identify, while ME is far more serious and need to have brain inflamation..that's why is called encephalomielytis after all...

 

[adambeyoncelowe]

Could'nt agree more! CFS is a category of different diseases that share similar symptoms and are hard to identify, while ME is far more serious and need to have brain inflamation..that's why is called encephalomielytis after all...

Except, some researchers think the whole subtypes issue has been overstated. It may just be one basic hypometabolic state with add-on complications that differentiate patients.

Neuroinflammation does appear to be present (astrocytes, microglia, etc) in patients, plus changes to brain structure (WM, GM changes) and hypoperfusion. Issues with dorsal root ganglions have also been reported, at they're technically outside the spine.

Myalgic encephalopathy is probably more accurate than encephalomyelitis, but it can still be shortened to ME. I suspect a minority of patients do have significant lesions too, but that's not an issue for most.

CFS as a label is not without problems too. It's like calling dementia 'chronic forgetfulness syndrome' or diabetes 'chronic thirst syndrome'. It focuses on one obvious symptom to the detriment of the complexity of the illness. CFIDS was probably better, although the immune issues are wedded to hypometabolism, so maybe it should have been CFMIDS (chronic fatigue metabolic immune dysfunction syndrome), but then that's starting to get too long.

ME endures among many because a) it has history, b) it suggests muscle and brain pathology (which is right, even if that pathology doesn't always manifest exactly the name suggests), and c) it commands a gravitas befitting its devastating effect.