Highly elevated CK (Creatine-kinase) anyone else?

[Thinktank]

The rheumatologist called me today about the elevated CK, he wants to me to test again to be sure it's not a "technical" error. I will do it, and i'm sure it will be elevated again.
"there's nothing wrong with your heart", "i didn't see myopathy" blabla. I told him i'm badly underweight with muscle wasting, maybe he doesn't know what's going on but i'm visibly sick and an elevated CK level is a significant finding.
Don't try to brush it off as idiopathic nonsense!

 

[Thinktank]

This quote is from the Fluge and Mella paper about Pyruvate Dehydrogenase-

LINK

This paper seems to be saying that at least in males with ME/CFS, there is significant protein catabolism, which can lead to muscle wasting. If you notice the pink box below, it shows all the amino acids that feed Acetyl CoA and that feeds the Krebs cycle.

The amino acids get used up there, instead of pyruvate from glucose, because Pyruvate Dehydrogenase is impaired. So the cells use an alternate route by directly creating Acetyl CoA from aminos, which uses up a lot more amino acids, making the need for protein or amino acids much higher.

I feel a lot better since starting 10-12 gms a day of BCAA's about 2 weeks or so ago!

I feel better too from the use of BCAA's, i do have to be careful though because when overdoing it i see my fatty tissue melt away like snow in july.
My skin also clearly improves. I had to stop taking it due to an IBD flare but i'm gonna try it again soon.

 

[Thinktank]

What up thinktank. It’s interesting that you mention CK levels. I used to be extremely active (college football, surf, snowboard, box, mountain bike, you name it I did it. I didn’t look like Brad Pitt, but I was in really good shape. I could go for a 10 mule run like it was a walk in the park) and out of nowhere I started getting rhabdomyolysis. Basically out of nowhere my muscles started breaking down pretty severely. Over a course of a year I ended up with it 5 or 6 times. Every doc I’ve takked to about this is completely confused as to why. But my CK levels where 87,000 the first time (they kept having to measure the swelling in case they needed to give me a Fasciotomy). The next few times they were elevated at about 65K-75K and the last 2 times they were 20K and 5K. Crazy shit. Any way after that year everything went down hill( won’t get into my life story) and I’m not bed bound but I’m pretty close. Every time I get my CKs checked they come back slightly elevated(abnormal) or are on the high end of the range (in talkin about less than 100-50). What’s weird is the high end is what you would expect to see in someone who worked out or did a full days manual labor job, etc. so your definitely not alone.
Just a word of caution from a rhabdo pro. If your urine starts getting dark( tea colored), if a muscle group you used strenuously starts to swell and feels more bone crushing than lactic acid build up, you should hit the ER. The extra myoglobin floating around in your blood can do some damage to your kidneys.

If you have any questions let me know. This whole disease is so weird.

Sorry to hear you had such a difficult time with rhabdo. Do you still have it?

My urine looks normal but my muscles do swell and feel absolutely torn after streneous exercise, it's not comparable to lactic acid, it really hurts! I was thinking about having myoglobin tested in serum and urine. I will at least bring it up with my rheum next week.

 

[Thinktank]

Do you know what else you will be checked for besides Sjogrens? I don't think I have ever had an elevated CK (although it is possible I did at some point and am not remembering). When I was injured by Levaquin in 2010, a lot of my inflammation tests were elevated but I am not sure about that one.

Basic autoimmunity panel etc. IgG, IgM, IgA levels, B-cells etc.

You know this muscle wasting started right after a weeks use of ciprofloxacin, i've mentioned this and fluoroquinlone toxicity syndrome to every doc. but nobody listens.

 

[Thinktank]

I have a long history of elevated CK with the earliest result I have showing it elevated back in 2006. It seems to fluctuate with it dropping in range sometimes and the highest it's been is 1430. I noticed this (below) a while back in the clinical manifestations table from a publication by the MCAS doctor Dr Afrin:



https://www.clinicaltherapeutics.com/article/S0149-2918(15)00074-0/pdf

I think, but I'm not certain, that mine elevates more when my muscle pain is at its worst and the first positive test I got in 2006 was around the time my sub-clinical MCAS went full blown and one of my first symptoms along with food reactions was severe muscle pain.

Whenever I'm going through a period of severe muscle pain muscle wasting soon follows.

Have they been able to find out why it's elevated?
I've a very strong suspicion that i have MCAS, i'm almost 100% sure. This muscle wasting increases when i have a MCAS "attack"

 

[Thinktank]

I was in a study looking at muscle injury to try to find out what was causing my muscle pain. They found very elevated creatine phosphokinase if I recall correctly. This was in the late 80s. They never found a cause. I did not have any of the things they were looking for, whatever those were. I do know they were looking at neurological issues too, as I had numerous long needles stuck in my muscles during testing, measuring electrical signals.

Has CK ever been tested in a large cohort of ME patients?

 

[Thinktank]

Along with muscle wasting and muscle pain, my CK was also elevated in the Thousands. This was a few years ago. EMG is abnormal and shows muscle damage, Now they tell me I have some sort of myopathy and probably muscular dystrophy. In the beginning I assumed it was just part of my CFS/Fibromyalgia, but luckily I asked my neuro for a CK and he agreed. I need to rule out mitochondrial myopathy/disease, and some other muscular dystrophies. Some neurologist believed it was due to my very low vitamin D levels 3 ng. Do you have muscle pain?

Other tests that were abnormal: aldolase, b12, Thiamine. EMG

I did have a case of beriberi (which is a severe form of b1 deficiency)which did fit the picture, but as soon as I treated the b1 some symptoms did disappear, but others remained.

I ended up getting WES(whole exome sequencing and they did find a variant of unknown significance, but likely pathogenic of a rare muscle disease.

That sounds awful, have you found anything that has helped?
Yes my muscles hurt often for no reason. Especially after an allergic/MCS attack like today.

 

[Gingergrrl]

The rheumatologist called me today about the elevated CK, he wants to me to test again to be sure it's not a "technical" error. I will do it, and i'm sure it will be elevated again.
"there's nothing wrong with your heart", "i didn't see myopathy" blabla. I told him i'm badly underweight with muscle wasting, maybe he doesn't know what's going on but i'm visibly sick and an elevated CK level is a significant finding.
Don't try to brush it off as idiopathic nonsense!

Good for you and I am glad that you will re-test it and not let him dismiss it as idiopathic nonsense as you said.

You know this muscle wasting started right after a weeks use of ciprofloxacin, i've mentioned this and fluoroquinlone toxicity syndrome to every doc. but nobody listens.

I was diagnosed with Fluroquinolone Toxicity Syndrome from Levaquin in 2010 but back then even with a diagnosis, no one knew how to treat it (although I tried different meds, supplements, and did six months of PT to try to fix my triceps tendon that was severely injured from the Levaquin). I am not even sure if anyone knows how to treat it now?!

It definitely weakened my muscles although after about 1.5 years, I had made a significant recovery. Sadly for me, I got severe Mono from EBV in 2012 followed by moving into a rental with toxic mold ten months after having Mono. So there were multiple immune system triggers. But I still believe if I had not had the neurotoxic reaction to Levaquin, my immune system could have handled the future triggers better.

 

[alex3619]

Has CK ever been tested in a large cohort of ME patients?

Not that I recall.

 

[hixxy]

Have they been able to find out why it's elevated?
I've a very strong suspicion that i have MCAS, i'm almost 100% sure. This muscle wasting increases when i have a MCAS "attack"

I've actually only recently started investigating again and could potentially be having a muscle biopsy in the not too distant future. Yes, my muscle pain and wasting increases during mast attacks for sure.

 

[Thinktank]

I've actually only recently started investigating again and could potentially be having a muscle biopsy in the not too distant future. Yes, my muscle pain and wasting increases during mast attacks for sure.

Do you also suffer from IgE mediated allergies? I'm wondering if that might cause CK to elevate as well.
I'm now pretty much allergic to everything, i even have an allergy to rice which is quite rare.
My muscle wasting also occurs when i ingest something i'm allergic to.

 

[Thinktank]

Hypothyroidism might be another cause of elevated CK.
My TSH is now 3.9, not high enough for clinical hypothyroidism but far from optimal!
It's creeping up a few decimals every year.
Maybe i should trial some T3 or dessicated thyroid. I mean, the outer quarters of my eyebrows have fallen off (sign of hypothyroidism) and i have some other symptoms that i share with hypothyroidism.
When bringing it up to doctors they always say it's impossible because i'm so skinny, but i blame that to my IBD (Crohn's).

 

[hixxy]

Do you also suffer from IgE mediated allergies? I'm wondering if that might cause CK to elevate as well.
I'm now pretty much allergic to everything, i even have an allergy to rice which is quite rare.
My muscle wasting also occurs when i ingest something i'm allergic to.

I only have IgE allergies to wheat and cats. Everything else is MCAS sensitivities. I also have eosinophilic esophagitis.

 

[Thinktank]

I only have IgE allergies to wheat and cats. Everything else is MCAS sensitivities. I also have eosinophilic esophagitis.

Ok. I had that too, eosinophilic infiltration in tissue. + highly increased eosinophil protein x.

 

[pamojja]

Do you also suffer from IgE mediated allergies? I'm wondering if that might cause CK to elevate as well.

Have rhinitis, had one anaphylactic shock with a bee sting and sky high IgE. About 1300 (<100 normal range). But no elevated CK.

 

[Gingergrrl]

I'm now pretty much allergic to everything, i even have an allergy to rice which is quite rare. My muscle wasting also occurs when i ingest something i'm allergic to.

@Thinktank When I was experiencing severe MCAS in mid 2015, I became allergic to all food but water and this included plain white rice. But it was not an IgE allergy vs. that my mast cells were so insanely over-active (for lack of a better word) at that time, that my body was rejecting all food. I can now eat rice, and almost all foods, with no allergic reaction. I would assume in your case that it is not an IgE reaction to rice vs. a mast cell reaction.

I was also curious what you meant re: your muscle wasting occurring when you ingest something you are allergic to? Is this an instant reaction or delayed? Do you have progressive weakening of your muscles like I did prior to treatment (or is the muscle wasting something visible vs. weakness)? I had no visible muscle wasting but my muscle and lung weakness continued to progress and one of my doctors was afraid I'd eventually end up on a ventilator if it did not plateau.

It slowly improved as I did my treatments and is now gone (except I am now de-conditioned and am not physically strong from almost 4 yrs of being in a wheelchair). I will be starting physical therapy in about a week to try to get back to normal levels of muscle strength, or as much as possible given my situation.

 

[Thinktank]

@Thinktank When I was experiencing severe MCAS in mid 2015, I became allergic to all food but water and this included plain white rice. But it was not an IgE allergy vs. that my mast cells were so insanely over-active (for lack of a better word) at that time, that my body was rejecting all food. I can now eat rice, and almost all foods, with no allergic reaction. I would assume in your case that it is not an IgE reaction to rice vs. a mast cell reaction.

I was also curious what you meant re: your muscle wasting occurring when you ingest something you are allergic to? Is this an instant reaction or delayed? Do you have progressive weakening of your muscles like I did prior to treatment (or is the muscle wasting something visible vs. weakness)? I had no visible muscle wasting but my muscle and lung weakness continued to progress and one of my doctors was afraid I'd eventually end up on a ventilator if it did not plateau.

It slowly improved as I did my treatments and is now gone (except I am now de-conditioned and am not physically strong from almost 4 yrs of being in a wheelchair). I will be starting physical therapy in about a week to try to get back to normal levels of muscle strength, or as much as possible given my situation.

It must feel great to be able to eat something without experiencing any sort of reaction. I react to everything at the moment in various degrees.

I do have an IgE reaction to rice, CAP IgE test positive, also skin prick positive.
Another issue is that i'm very allergic to all pollen and that causes cross-reactivity with certain protein in foods.

What i'm dealing with is:
- Many IgE mediated allergies
- Cross-reactivity between pollen and many foods
- MCAS (not proven yet but i'm 100% sure).

Sometimes it feels like even a mild allergy can trigger my MCAS, if that's even possible?

About the muscle wasting / pain, it depends on the food. It's a cascade of inflammatory symptoms that happen after each other over a period of several hours. I then keep losing weight the days after, my muscles hurt, feel weak and are visibly reduced in size. If i don't take several doses of ceterizine then i'm doomed for the following few days.

I'm really happy to hear that your treatments have paid off and you are able to start some exercise soon. you're inspiring me to keep going because all of this and the disappointing consultations with specialists has really made me depressed.

 

[Gingergrrl]

It must feel great to be able to eat something without experiencing any sort of reaction. I react to everything at the moment in various degrees.

It does feel great but I still remember vividly when I was reactive to all food and ended up in the hospital due to anaphylaxis in 2015. It was pure hell and I really sympathize with what you are going through.

I do have an IgE reaction to rice, CAP IgE test positive, also skin prick positive.

Wow, I did not realize you could have an IgE allergy to rice. The only true IgE allergy I had on testing was clams and certain fish (which are all very high histamine any way). It explained why I was never able to tolerate fish oil.

Are you able to eat sweet potatoes or yams? There was a point in 2015, after I was hospitalized on IV Benadryl, that I had 4-5 safe foods and the top three safest for me were rice (which I know is out for you), lamb, and sweet potatoes.

About the muscle wasting / pain, it depends on the food. It's a cascade of inflammatory symptoms that happen after each other over a period of several hours. I then keep losing weight the days after, my muscles hurt, feel weak and are visibly reduced in size. If i don't take several doses of ceterizine then i'm doomed for the following few days.

This is different than my experience but I am wondering, have you tried an H1 blocker that is stronger than Zyrtec (Cetirizine)? Have you ever tried Atarax? Atarax was my rescue med for 2015 & 2016 and once I no longer needed it, I only used it as one of my pre-meds for IVIG.

I'm really happy to hear that your treatments have paid off and you are able to start some exercise soon. you're inspiring me to keep going because all of this and the disappointing consultations with specialists has really made me depressed.

I'm not sure if the Physical Therapy will really be considered "exercise" although for my prior level of complete inactivity with wheelchair since Oct 2014 it probably will be. We want to try to reduce my chronic neck pain and gently strengthen my muscles. At present I am able to take my dog on a 15 min walk every day, with the first half of walk on an incline. The entire thing from door to door takes about 30 min. We walk at a very slow pace but it is the most "exercise" (if you can call it that?) that I have done since 2013, even before I used the wheelchair.

 

[Thinktank]

Are you able to eat sweet potatoes or yams? There was a point in 2015, after I was hospitalized on IV Benadryl, that I had 4-5 safe foods and the top three safest for me were rice (which I know is out for you), lamb, and sweet potatoes.

Yes, sweet potatoes / yams is one of my staplefoods now. It causes a slight reaction but it's tolerable.
I'm ok with all meat, chicken does cause a slight reaction. I can't have any dairy including eggs. Eggs <-> chicken, corss reaction probably.

This is different than my experience but I am wondering, have you tried an H1 blocker that is stronger than Zyrtec (Cetirizine)? Have you ever tried Atarax? Atarax was my rescue med for 2015 & 2016 and once I no longer needed it, I only used it as one of my pre-meds for IVIG.

I've pretty much tried all antihistamines except atarax.
Cetirizine works very well for me and causes the least side effects after fexofenadine.
Of all the antihistamines i find ketotifen to be the strongest. I can only have it before bedtime!

I'm not sure if the Physical Therapy will really be considered "exercise" although for my prior level of complete inactivity with wheelchair since Oct 2014 it probably will be. We want to try to reduce my chronic neck pain and gently strengthen my muscles. At present I am able to take my dog on a 15 min walk every day, with the first half of walk on an incline. The entire thing from door to door takes about 30 min. We walk at a very slow pace but it is the most "exercise" (if you can call it that?) that I have done since 2013, even before I used the wheelchair.

Babysteps, you will get there!

 

[Thinktank]

CK has been retested and came back within normal range. I have to say that my muscles were hurting much more the first day of testing than they do today.
Can CK drop so quickly in blood?
10 days ago it was 2100, now it's 100. Technical error or does it really relate to the pain in my muscles???
The rheumatologist will now probably brush it off as a technical error so it got me nowhere, again.

I'm thinking of triggering a MCAS attack deliberately and then go to a private lab to have CK measured.