OATs Test and Myopathy

[JasonPerth]

Hi all,

2 questions, if you can answer either it would be appreciated.

1. Just wondering if anyone has ever been to a neurologist or doctor and actually looked into Muscle diseases
Like Myopathy, which sounds identical to MECFS- im suprised i never heard of it until today..
In 2016 i was fit and playing soccer, i got a whopping couch bedridden virus, and a month later i tried to play soccer again and my muscles didnt work anymore when i tried to do more then a walk.
Would that not be Myopathy?? Im unsure im assuming most with MECFS have a similar experience early on after onset.

2. Ive recently done an OATS test (organic Acid test)
What can this test show and what markers in this test dhould i be looking for or expecting to be abnormal relating to MECFS abnormalities?

Thankyou

 

[hapl808]

Myopathy just means muscular disease I believe. I'm pretty sure I have one, but the question is what? It's not a well defined area - some things may be clear with elevated CK and other biomarkers, some are clear genetic disorders that would show up on an exome panel, and others may be vague disorders that are poorly understood.

I've seen three neurologists and one neuromuscular specialist. In all fairness, I declined a muscle biopsy since my muscles never recover from even standing for too lung, I didn't think cutting out a piece in an exploratory biopsy made sense. My understanding (from physician friends) is that an exploratory biopsy with no expected pathology is much less likely to be diagnostic than when you are looking for something specific.

But I've had various blood work, exome panels, MRIs looking for myositis or other issues, etc. I can't walk without crutches, but nothing clearly diagnostic other than some low grade inflammation and a really poor response to all physical therapy. Finally stopped doing it as it was making me worse and physical therapists kept telling me I needed a neurologist.

Some things you can probably rule out from symptoms. I don't think I have any form of muscular dystrophy as my understanding is that muscle pain is usually less associated than just muscle weakness. Possibly MS seems more likely, but that's a somewhat vague and hard to treat disorder. My connective tissue seems degraded, but not sure why.

 

[Bufeyberry]

I have CIDP. It came on acutely like GBS would, but I soon learned that it was CIDP. It is basically the chronic counterpart of GBS. A highly skilled and experienced neuromuscular neurologist is very important. I had EMG/NCS that I was told were normal. When I finally got to a university hospital which was a center of excellence in GBS/CIDP, it didn’t take long at all to have an answer. She was shocked at the level of demyelination in my peripheral nerves. I was admitted and started on the loading dose of IVIG that I continued on from 2016 until the past 6 months or so. I am having great difficulty getting my treatments because my ME is so bad. Last year this same doctor was integral in saving my daughters boyfriend. He has very bad MG that was resistant to treatment and still he can’t go over 2 weeks without having serious symptoms. He was tried on Plasmapheresis and IVIG and even had his thymus gland removed after he got out of severe MG crisis and having to be intubated. He now takes several meds and receives a newer type infusion. He’s still having symptoms and coming close to crisis status nearly every month.
I’d start with finding that very talented and experienced neuromuscular neurologist, because there’s a huge difference in their specialties. If you haven’t had an EMG and nerve conduction studies, that’s very important. I can’t imagine that any Dr would want to do a muscle biopsy, if they hadn’t already performed those studies. But I guess anything’s possible.
As far as MS that’s demyelinating but it affects the central nervous system, while CIDP affects the peripheral nervous system. There are tests that can be conclusive for both though. It sounds like you have read enough to know that already though. I have to agree with your friend, in that they’d need to be looking for something specific to find it, most likely. I’ve read scary stuff about nerve biopsies gone bad, but I haven’t studied much on it, beyond that. I also don’t know a great deal about myopathy, other than I believe it is a more general term, that requires another term to describe a particular disease process. It sounds like something is going on that’s weakening your muscles though. I suppose that could be a whole lot of things. Maybe see other specialists in addition to seeing a neurologist. There are terrible diseases out there like ALS, but I believe they would’ve had some inkling that this was going on. I’d see what your manual neurological tests revealed. Like clonus and things like that. Having ME that’s severe/very severe has shown me things that none of the other diseases I’ve been hit with have. The level of disability and pain I now have is worse than all of my other illnesses combined, and then some. So I would think that it could be ME causing your symptoms. I certainly hope it’s not though. I also hope you get some answers soon. Sorry that’s all I have the strength to type right now. Good luck to you. Please let us know what happens. Take care.

 

[JasonPerth]

I have CIDP. It came on acutely like GBS would, but I soon learned that it was CIDP. It is basically the chronic counterpart of GBS. A highly skilled and experienced neuromuscular neurologist is very important. I had EMG/NCS that I was told were normal. When I finally got to a university hospital which was a center of excellence in GBS/CIDP, it didn’t take long at all to have an answer. She was shocked at the level of demyelination in my peripheral nerves. I was admitted and started on the loading dose of IVIG that I continued on from 2016 until the past 6 months or so. I am having great difficulty getting my treatments because my ME is so bad. Last year this same doctor was integral in saving my daughters boyfriend. He has very bad MG that was resistant to treatment and still he can’t go over 2 weeks without having serious symptoms. He was tried on Plasmapheresis and IVIG and even had his thymus gland removed after he got out of severe MG crisis and having to be intubated. He now takes several meds and receives a newer type infusion. He’s still having symptoms and coming close to crisis status nearly every month.
I’d start with finding that very talented and experienced neuromuscular neurologist, because there’s a huge difference in their specialties. If you haven’t had an EMG and nerve conduction studies, that’s very important. I can’t imagine that any Dr would want to do a muscle biopsy, if they hadn’t already performed those studies. But I guess anything’s possible.
As far as MS that’s demyelinating but it affects the central nervous system, while CIDP affects the peripheral nervous system. There are tests that can be conclusive for both though. It sounds like you have read enough to know that already though. I have to agree with your friend, in that they’d need to be looking for something specific to find it, most likely. I’ve read scary stuff about nerve biopsies gone bad, but I haven’t studied much on it, beyond that. I also don’t know a great deal about myopathy, other than I believe it is a more general term, that requires another term to describe a particular disease process. It sounds like something is going on that’s weakening your muscles though. I suppose that could be a whole lot of things. Maybe see other specialists in addition to seeing a neurologist. There are terrible diseases out there like ALS, but I believe they would’ve had some inkling that this was going on. I’d see what your manual neurological tests revealed. Like clonus and things like that. Having ME that’s severe/very severe has shown me things that none of the other diseases I’ve been hit with have. The level of disability and pain I now have is worse than all of my other illnesses combined, and then some. So I would think that it could be ME causing your symptoms. I certainly hope it’s not though. I also hope you get some answers soon. Sorry that’s all I have the strength to type right now. Good luck to you. Please let us know what happens. Take care.

Its odd
I doubt its extremely Severe- as ive been like this since 2016 and im alive still in 2023 with 0 treatment tried yet- and 2017-2022 i was able to work full time and play golf a few times a week even.
I did visit a neurologist early on in 2018 when i was mild and he just made me do basic biology movements while asking me about my symptoms and when an MRI i did came back with no abnormal findings that was kind of the end of that.
Ive recently seen an Intergrative GP who is aware of ME near me and he also hasnt mentioned any muscle disorders- but he also has done many many blood and urine and saliva tests with me that dont really show any inflammation or any biomarkers abnormal (which is also common with the uncurable ME?) after all- the muscle fatigue is only one of about 15+ symptoms now. But when i was mild it was probably just 1 in 4 symptoms as i didnt have any neurological/cognitive issues when i was mild
I just had a huge “crash” last year and got a cold and have now declined to housebound/ bedbound.
Which i think is normal for MECFS?
The reason this only just came on my mind was this study from yesterday showed some myopathy in all LC patients compared to controls after exercise i think. Which kind of makes sense because it’s exactly what we feel. The brain feels like the muscles just dont want to work anymore

 

[hapl808]

There are tests that can be conclusive for both though. It sounds like you have read enough to know that already though.

Thanks for that detail. There are many tests I wish I had gotten over the years when I was mild or even moderate. By the time I knew what to request, my condition had declined so much that it was tough to make it to the doctor. Even my last MRI looking for myositis led to a permanent loss of function (I think just the difficulty getting to the doctor, the length of the MRI, etc). I think a brain MRI would've been more diagnostic, but not worth another permanent loss of function. I also have some newer guesses on possible causes, and sadly I don't know if there are any treatments.

(One potential area I've researched is seven days before I got suddenly sick, I had a Hep B vaccination. Just stumbled across research into a potential link between that vaccination and demyelinating disorders or non-typical MS. Never had occurred to me to connect the vaccine. Since I was traveling, I just assumed I got sick but none of the meals seemed likely so I never knew.)

Anyways, then I declined again sharply from even there. I haven't managed to leave the house in years so I don't expect to be getting more tests unfortunately. Even a telehealth appointment crashes me for many days. Now my good days are when I'm 'only' housebound instead of bedbound.

 

[Bufeyberry]

Thanks for that detail. There are many tests I wish I had gotten over the years when I was mild or even moderate. By the time I knew what to request, my condition had declined so much that it was tough to make it to the doctor. Even my last MRI looking for myositis led to a permanent loss of function (I think just the difficulty getting to the doctor, the length of the MRI, etc). I think a brain MRI would've been more diagnostic, but not worth another permanent loss of function. I also have some newer guesses on possible causes, and sadly I don't know if there are any treatments.

(One potential area I've researched is seven days before I got suddenly sick, I had a Hep B vaccination. Just stumbled across research into a potential link between that vaccination and demyelinating disorders or non-typical MS. Never had occurred to me to connect the vaccine. Since I was traveling, I just assumed I got sick but none of the meals seemed likely so I never knew.)

Anyways, then I declined again sharply from even there. I haven't managed to leave the house in years so I don't expect to be getting more tests unfortunately. Even a telehealth appointment crashes me for many days. Now my good days are when I'm 'only' housebound instead of bedbound.

I think you may be onto something having remembered the vaccine you had. There a lot of things that can bring on ME and I like you have learned the hard way that some crashes can be more of a permanent decrease in the baseline. I’ve had a lot of illnesses over the past 15 years or so. I was already having to get in my bed for weeks at a time, but I had no clue about ME. At least I know what was causing so much pain and fatigue now. I really don’t think the symptoms are from my rheumatological or neurological disease processes. I guess it’s almost like a perfect storm that hits us. I do know I was already close to severe and then I had Trigeminal Neuralgia hit. Shortly after and probably actually starting at the same time as the TN, I had Ramsey Hunt Syndrome as well. It continued to hit me chronically nonstop. No sooner than some lesions would be starting to heal a little, more would come. Like every 2 weeks. It came with terrible flulike symptoms viral illness feelings. I was started in Valacyclovir and it took a long time to start to stall the attacks. Like well over a year, probably two. Time seems to slip away. It still hits at least once a month, but nowhere near as bad as it was. Then I got Covid while homebound and about 95% bedridden. Someone brought it in I guess. That was the last straw I think. Now I have so many symptoms I can’t even keep them straight. Being bedridden is so hard and I’m very sorry you’re in this situation too. I could tolerate it more than most I think, because if so many years of barely making it to my bed, and being forced to continue business things from bed. It’s like I’ve gotten used to the things that would drive most people mad. I was high energy and went wide open constantly, so yea I miss my life for sure. But nothing is as devastating as the constant severe pain. When pain is this bad it takes everything from you. Its merciless and it still brings tears thinking that so many have had to suffer for this long. Someone used the term “inhumane” to describe what we are left to suffer through. I think that’s the best word for it. Thankfully my GP now knows what I have. He helped me for so long through this struggle and we always thought we sort of had the answer with MCTD/Lupus and then CIDP. Our visits have been virtual for I guess 3+ years at least. When I finally forced myself to go in and see him, that’s all it took. He confirmed ME. That visit resulted in a 5 day hospitalization, and I was released way too early. Had a Dr. come in who had no idea what ME was. It was very traumatic and degrading. I was always a fighter and it’s extremely disheartening when you run across a Dr. like this hospitalist. She had zero compassion and I didn’t have enough strength to fight for myself anymore. So yes I completely understand the crashes and the horrific repercussions of “care”. I really needed the hospital visit, and I did receive my much needed IVIG while there, but it was not worth it. I was sent home terribly sick and paid dearly. I was already severe and now I’ve slipped to very severe. I didn’t think I could get any worse, but I was wrong. The pain takes my breath away. Showers and baths are a distant memory. It was always a joke that I bathed more than a duck. I guess I punched my ticket on the cap for baths in one’s lifetime early because of that. I still have a sense of humor and I haven’t lost my empathy, so in many ways I feel I’m more fortunate than the mean hospitalist. This disease takes you down to a level that some may never see in their lifetime. At least we can say we really have survived the impossible. I’m deeply disappointed in the entire system for the way we have all been treated. I already k ow the system isn’t fair, but this level of inhumane treatment is just unacceptable. Anyway my PCP is still trying to help me with my neurological situation. We know that going to see my neuro at the university hospital will require transport in a squad where I can lay flat on a stretcher. Then hospitalization to treat my symptoms and hopefully stabilize me enough to be transported back home to my bed. We just have to get her to understand all of this. Then hopefully I’ll be able to have my IVIG infused here in my bed like I used to get it. I’m very frightened of what the crash will bring this time. Like what else can it take from me? I’m thinking it’ll be my ability to communicate on groups like this and I’ll probably end up not being able to tolerate food. Both of these things are really difficult now, but I know it can get worse. I’ll not question the power of ME again that’s for sure. Maybe I will just not go. I think I'm still battling to get it done because I want so badly for my neurologist to understand this illness and to be able to recognize it in the future. Im sure that deep down, I want her validation as well. She’s not like the mean hospitalist. She’s a really caring person, but the fact remains, that ME is still in the shadows. I feel like we need to spread the word whenever we can. Maybe it’ll help someone else in the future. Maybe Dr’s will follow the newer guidelines and not recommend GET or inappropriate types of CBT. That may prevent someone else from pushing their body all the way to severe/very severe. Idk but I sure hope it happens sooner than later. Take care.

 

[JasonPerth]

Got no idea what virus was my onset
Just got a random virus with the main symptom of a heavy Cough and i was bedridden sleeping non stop for a few months. Remember trying to get back into work and sleeping on the job and behind the wheel for a few weeks until the sleeping pattern eventually got back to normal but was never the same since then

 

[Garz]

2. Ive recently done an OATS test (organic Acid test)
What can this test show and what markers in this test dhould i be looking for or expecting to be abnormal relating to MECFS abnormalities?

i have done a few OAT's - its a good test that conveys a huge amount of information - but this is one of the most complex tests out there in terms of interpretation.

reason being there are around 90 analytes tested - and each has its own story and rules for interpretation - to be put in the context of one or more of several diverse bodily mechanisms - brain chemistry, energy metabolism, microbial metabolites, Krebs cycle, nutrient status etc etc

v few practitioners have taken the time to lean how to interpret the test or will spend the time to do so on your test - as its a big job. so you are better off learning how to do so yourself
the test itself is the best place to start - it has decent explanations in the report back pages on interpretation of all analytes that were out of normal range.

in CFS i would expect to see disturbances in several of these - but not necessarily to the degree that would shout smoking gun at you

• oxidative stress is likely high or v high
• anti-oxidant status is likely low ( as a result of them being used up dealing with the above)
• signs of microbial overgrowths are likely ( many CFS patients have gut issues linked to dysbiosis or SIBO)
• anomalies in energy metabolism are likely - but may not be radical
• disturbances in neurotransmitter balance - shifted towards inflammatory tryptamine metabolism

so the test gives you a good window into what is going on - in terms of inflammation, nutrients, microbial overgrowths etc - many of which are actionable at this level

but does not necessarily tell you why all these systems are out of whack - other than say - inflammation and oxidative stress are high without necessarily pinpointing the root cause

but as you likely know by now - the puzzle of chronic illness is rarely as simple as "take this one test, it will supply all the answers"
instead its more a case of building a picture from many different clues and indicators - which may include things from the OAT test. in this regard i found it useful.

 

[ChookityPop]

Its odd
I doubt its extremely Severe- as ive been like this since 2016 and im alive still in 2023 with 0 treatment tried yet- and 2017-2022 i was able to work full time and play golf a few times a week even.
I did visit a neurologist early on in 2018 when i was mild and he just made me do basic biology movements while asking me about my symptoms and when an MRI i did came back with no abnormal findings that was kind of the end of that.
Ive recently seen an Intergrative GP who is aware of ME near me and he also hasnt mentioned any muscle disorders- but he also has done many many blood and urine and saliva tests with me that dont really show any inflammation or any biomarkers abnormal (which is also common with the uncurable ME?) after all- the muscle fatigue is only one of about 15+ symptoms now. But when i was mild it was probably just 1 in 4 symptoms as i didnt have any neurological/cognitive issues when i was mild
I just had a huge “crash” last year and got a cold and have now declined to housebound/ bedbound.
Which i think is normal for MECFS?
The reason this only just came on my mind was this study from yesterday showed some myopathy in all LC patients compared to controls after exercise i think. Which kind of makes sense because it’s exactly what we feel. The brain feels like the muscles just dont want to work anymore

thanks for sharing that study. this is incredibly facinating. I am pushing for a muscle biopsy atm. I have HUGE muscle issues

 

[JasonPerth]

I

i have done a few OAT's - its a good test that conveys a huge amount of information - but this is one of the most complex tests out there in terms of interpretation.

reason being there are around 90 analytes tested - and each has its own story and rules for interpretation - to be put in the context of one or more of several diverse bodily mechanisms - brain chemistry, energy metabolism, microbial metabolites, Krebs cycle, nutrient status etc etc

v few practitioners have taken the time to lean how to interpret the test or will spend the time to do so on your test - as its a big job. so you are better off learning how to do so yourself
the test itself is the best place to start - it has decent explanations in the report back pages on interpretation of all analytes that were out of normal range.

in CFS i would expect to see disturbances in several of these - but not necessarily to the degree that would shout smoking gun at you

• oxidative stress is likely high or v high
• anti-oxidant status is likely low ( as a result of them being used up dealing with the above)
• signs of microbial overgrowths are likely ( many CFS patients have gut issues linked to dysbiosis or SIBO)
• anomalies in energy metabolism are likely - but may not be radical
• disturbances in neurotransmitter balance - shifted towards inflammatory tryptamine metabolism

so the test gives you a good window into what is going on - in terms of inflammation, nutrients, microbial overgrowths etc - many of which are actionable at this level

but does not necessarily tell you why all these systems are out of whack - other than say - inflammation and oxidative stress are high without necessarily pinpointing the root cause

but as you likely know by now - the puzzle of chronic illness is rarely as simple as "take this one test, it will supply all the answers"
instead its more a case of building a picture from many different clues and indicators - which may include things from the OAT test. in this regard i found it useful.

luckily enough believe to have 2 experienced practitioners who will kindly read and interpret it for me. I should get the results next week.
Why does it take so long for an OATS test results? Been like 25 days post delivered

 

[Garz]

luckily enough believe to have 2 experienced practitioners who will kindly read and interpret it for me. I should get the results next week.
Why does it take so long for an OATS test results? Been like 25 days post delivered

How did it go?