Creatine Helps? Mitochondrial Disease?

[trappedat20]

Okay, so I don't remember the exact day I started taking creatine but I was taking it in hopes it would help me with my muscle weakness problem. I think I started taking it Saturday or Sunday last week. My last seizure before today had been Monday. I had felt a little bit better while I was taking it and went 6 days without a seizure. I stopped taking it Friday because I ran out and than I had a seizure today. We think the creatine is helping me a little bit. I didn't take it for that long though so it's hard to really tell but It was a little easier to get up/down the stairs and I even had a pretty good day (for me) at the gym the other day, and I went 6 whole days without a seizure and when I did have a seizure I wasn't even taking it anymore. My norm is about 2-3 days. The weirdest thing is that I CRAVE CREATINE. It kinda reminds me of the people with Pica who crave sand and weird stuff, only I crave the creatine powder. Ever since the first time I took it I have been craving it all of the time. That's like saying you crave fish oil capsules or something. It's a little strange, but I really do crave it.

Anyways, does this sound like something related to mitochondrial disease or what? I feel like I come here quite often with a possible cause of a primary condition, but I really just don't know. I feel like the creatine was helping my seizures though because while I was taking it I didn't experience any (it takes about 2-3 days of taking it for it to work and to get out of your system which coorelates with when my seizures occurred.) I really did only take it for a little less than a week though so it's hard to say, but doesn't the fact I was craving it say something? As far as looking at the symptoms of Mitochondrial Disease goes nothing specifically stands out to me because a lot of it is general symptoms that could be said for anything, but does this creatine thing say something? My husband says that creatine helping my symptoms would only be seen in mitochondrial disease. Is this true?

Idk. Thoughts? Opinions? I don't really know anything about mitochondiral disease?

[Chaos]

I was at a continuing ed conference on Mito disease last fall. The doc who was speaking was one of the top specialists in the country. His opinion seemed to be that they still are a long way from truly understanding mito disease but that it may be involved in a lot of the chronic illnesses that we see today.

There are a few specific types of mitochondrial disorders they can test for using muscle biopsies but it's very expensive and requires surgery. Also, if you don't test positive for one of the types they test for, it doesn't mean you don't have mito disease, it just means you don't have one of the types they know how to test for yet.

Currently the only treatment seems to be high levels of supplements for the most part. Creatine is one of the ones this doc suggested. If it's working for you, that's great. Hope it continues to help!

[trappedat20]

I know that one of the metabolic screenings they do for this is liver enzymes and ammonia. When I was in the hospital one of my liver enzymes was 408 and the other was 836 which was off the charts as they are suppose to be 30-40. Everything else came back fine though and they did extensive testing for liver damage and they couldn't find anything. We still have no idea why my liver enzymes were so insanely high as I don't drink or take any medicines that would do this. Could this be related in anyway? I was reading up about it here http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934633 Thank you for your help.

[trappedat20]

Okay I have been taking creatine for about a week and half and have not had ANY seizures or fainting episodes. My usual rate of seizures and fainting episodes is 3-4 times a week and I don't see how that's a coincidence. I also crave creatine slightly less now that I am taking it regularly although I still crave it. Again, how strange is that? I still feel just as sick for everything else, but I have a little bit of an easier time going up/down the stairs, my muscle weakness isn't as bad as usual although it's still pretty pathetic, and no seizures or fainting. I am really wondering if this is pointing to a mitochondrial disease. I know it's rare which is why I feel strange trying to figure out if I have it at this point. Since the creatine is helping my husband and I are thinking of taking some more of the vitamins they use to treat it and see if I get even more results. I'm hesitant to to bring this up to a doctor unless I feel almost certain I have it. Thoughts?

[Chaos]

http://www.cortjohnson.org/blog/2014/04/07/report-san-fran-iv-moving-forward-exercise-findings-pointing-mitochondria/

The above is a synopsis article about several studies that were presented a couple weeks ago at the IACFS/ME meeting in San Francisco. They are all showing how the mitochondria seem to be implicated as being damaged in some way in ME/CFS patients. Since you've been having a lot of exercise intolerance (which is one of the hallmark symptoms of ME/CFS) this may very well apply in your situation as well.

The problem is your average doctor isn't well acquainted with mito disease or even the concept of it much less what to do about it so you probably aren't going to get much help there unless you have an exceptional doc. Even the ones who have some knowledge about it don't have much to offer other than supplements. If you really want to pursue this you probably will do best to find out the specialists in this field and try to see one of them.

[trappedat20]

@Chaos Oh wow 20% of people with CFS have problems with their mitochondria. That's very interesting because I thought that even though I had dysautonomia it would be so rare that it wouldn't be worth looking into. A lot of CFS overlaps with Dysautonomia too and I tend to have all of the stuff for CFS but since I have dysautonomia I don't really pay any attention to it. Even before I had dysautonomia I've always had a lot of problems with being fatigued. I never felt well rested and was always exhausted. Even as a young adolescent when I should have had loads of energy I spent most of my time in my room reading and stuff because I never had the energy to go out and do physical stuff.My fatigue is wayyyy worse now but I always just assumed it was normal back then.

Do you have any idea who I can see. I live right around Nashville, TN. I can't really seem to find any mito specialists who might take me on around here. I think I'd like to have this looked into further because why else would creatine help me with that if it wasn't mitochondrial disease causing it? It just doesn't make sense. If it just helped my muscle weakness that would make sense because it helps everyone with muscle production but creatine deficiency is part of mitochondrial disease and it's part of the cocktail of vitamins they want you to take. The fact I'm not having seizures because of it is really strange and the fact I crave it.

[Chaos]

Certainly seems like it would be worth looking into given your symptom set, the overlap between CFS and Dysautonomia, and the reactions you've had to both exercise and the creatine that you've been taking.

The doctor who spoke at the conference I attended was this gentleman. He's in New Orleans.

http://www.ochsner.org/find_a_doctor/doctor/dmitriy_niyazov/

He sees adults as well as children for mitochondrial disease. He's a geneticist so is familiar with EDS as well if you have any concerns that you might have that also. He is a big believer in using supplements to treat Mito.

There are other threads on here about mito so you might be able to pull some other names of specialists off of those.

[looneymom]

It sounds like you have found clue. Have you ever had your amino acids checked? The reason I ask is because L- Arginine helps the liver to detox and helps with Nitric acid. I found out that my son was very low and I have just started him on L-Arginine supplement. My son has low enery levels also. He is also on some supplements to help with this but not seeing too much improvement. I am hoping to get to the root of the problem after I get his 23 and Me test results back. Arginine is needed to start the methylation pathway cycle. Hope you are able to see a doctor soon and get some answers. My son has had the genetic testing for mitro and it was negative.

[looneymom]

Here is an article on Arginine that you might find interesting. I will be posting this one and some others under my old post. POTS is the secondary diagnosis.

http://vitamins.lovetoknow.com/What_Is_L_Arginine_Used_For

[trappedat20]

@looneymom that is so interesting because my liver enzymes in the hospital were sky high. They should not have been that high from stuff I was taking unless my liver wasn't detoxing properly or handling things properly. It feels like anything I take overloads my liver. I don't drink or do drugs or smoke or anything either and my liver is perfectly fine. I am going to look into taking that supplement thankyou. What is the 23andme testing for? I've noticed several people on this forum mention it. I thought of using that a few years ago to try to search out my biological father but it was too expensive and it would have only worked if him or a family member had an account. Is there other things it works for too? From what I hear you can be tested for mito and have it come back negative and still have it. Tests only determine certain types of mitochondrial disease and they don't have a test for everytype or something like that. Oh wow L-Arginine makes creatine? That's very interesting because I did not need a test to know I was very low creatine.. I mean I crave creatine powder which is extremely strange and now that I have been taking it I have an easier time going up/down the stairs and my seizures and fainting magically disappeared. I'm sure if I really pushed myself I'd have seizures and pass out but normal daily activity doesn't cause them anymore. I can go up or down the stairs once and be fine. I'm sure if I sat there and went up/down the stairs over and over I'd have a seizure but before all it took was one time and bam seizure. I did find that very informative and helpful thankyou. My husband had me take citruline which converts to L-Arginine once several months ago before the gym and I felt a lot better that day and was able to workout better but I never took it again or payed much attention. Looks like I should go back to taking it.TY.

@Chaos thankyou for all of your information. Yes,I'm definitely going to look into it. Do you think a regular geneticist would help? There's no mito specialists in my area and my husband and I can't travel to see someone at the moment. There's a few geneticists in my area and I'm wondering if they would know enough to at least order testing and stuff.

[Chaos]

I suspect the only way to find out would be to call the local geneticists' offices and ask.

There is a doc in England who has been working with ME/CFS patients for decades and feels that it's all Mito related. She's just published another book. called "Treating CFS. It's Mitochondria, Not Hypochondria."

The old version of the book is available on line here:

http://www.thyroidhelp.org/ViP/Diagnosing%20And%20Treating%20Chronic%20Fatigue%20Syndrome%20-%20Dr%20Myhill.pdf

The new version is available on Amazon and has another chapter added with some additional updates. Given the current problems with encryption for on-line banking and purchases you might want to wait a week or so before ordering though just to be safe.

http://www.amazon.com/Diagnosing-treating-Chronic-Fatigue-Syndrome/dp/1781610347/

[trappedat20]

I'm not sure if I should try to take the mito cocktail now and see how it helps or if I should not take anything so that it doesn't effect any tests they might do. I don't want to stop taking creatine though as I don't want my seizures to come back. They are working on a referral to Vanderbilt for me but I know that's going to take about a year to get in even if they do something for this I don't want to wait a year. Yeah, I heard about that virus. Thanks good idea. I will call geneticists around here and maybe even look at a different part of Vanderbilt and see what they say.

[IceLizard]

It is wonderful that you have found something to control the seizures and POTS symptoms. I am happy for you! Perhaps your problems do involve mitochondria. Since my symptoms are similar I will be trying out Creatine, too. Thanks for posting!

[trappedat20]

@IceLizard thankyou. Yeah, it hasn't really helped much with most of my dysautonomia symptoms but the funny thing is it's def. helping me. I took it for 6 days and was fine and than ran out and got really sick again. I started taking it again and have been taking it for 1.5 almost 2 weeks with no seizures or passing out. That doesn't seem like a coincidence. Before taking creatine I would have to take 4 breaks to go up or down the stairs in order to avoid seizures and I still felt pretty crappy about it. Yesterday I was wearing my holter montitor and I really wanted it to catch something so that they could figure something out. I was able to even jog up or down the stairs though without getting sick. By nightime (when I'm usually my worst) nothing really crazy had happened with my heart all day and I was worried it would look like I'm faking it after explaining in the hospital how crazy my heart would go and breathing going up the stairs so I ran up the stairs then done and then up again so I felt sick enough and so I layed down but it actually passed in 2 minutes and I did not have a seizure or pass out. I'm sure if I ran up/down he stairs one or two more times I would have had a seizure or passed out but thats def. a lot more than I could normally do. Before I would have to take 4 breaks on the stairs in order to avoid them. It's helping me in the gym too because the last time two times I went to the gym I was actually able to improve a slight amount because I didn't get nearly as sick as I normally do. After the first time I had it I started craving it often in the day although now I don't crave it as often anymore. It's like it was pica but for creatine powder or something. I feel very weird telling people that but it's the truth. It's like a sandy texture with no real taste and most people mix it with water but I put it in a bottlecap and lick it. I know it's very very strange lol. My husband picks on me for it because who does that but I swear it's like my body's way of telling me I need it.

That seems to be the extent that the creatine helped but those seizures were horrible and so even controlling that is enough to make me never want to let myself run out ever again. I'm thinking of taking other supplements from the mito cocktail and seeing if I can control more of my symptoms.

Good luck. I really hope it helps you! It took a few days for me to feel it working but the fact I craved it after trying it once made me realize something was wrong and that I should keep taking it. It was a happy mistake I found it. I took it to help with my muscle weakness but it also helped me seizures and syncope episodes.

[trappedat20]

Well I came extremely close to having a seizure at the gym today. I did one set and I felt like all of the oxygen had vanished from my body. My husband saw me turning blue and he came over to see me (that's normally the point of no return as far as the seizures go) but luckily I prayed the whole time and I wound up not having one but that's probably about the closest I've come to a seizure without having one. I was just praying over and over because I did not want to have a seizure there of all places. Normally I'm dumb and I test my luck but I knew better to have my husband help me to the car because the next set I would not be so lucky. I don't know what to do. For dysautonomia I'm supposed to stay conditioned but exercise is making me worse. I took a week off from working out because my husband is very iffy about me continuing and then I worked out yesterday and was a lot better during my workout because of it. Unfortunately I felt a lot worse today because of it and than after only 1 set almost had the seizure. Starting to think that exercise really is making me worse. I feel like this would be more closely related to Mitochondrial Disease than Dysautonomia since exercise is suppose to make positive improvements in dysautonomia patients. Really unsure what to do right now. My husband doesn't want me to workout anymore because of the possibility of mitochondrial disease but I don't want to stop and then have them say that I don't have it. I'm starting to think I really do have it though. I don't know what to do. I don't want to stop weightlifting and wind up with no muscle (it's not like I can progress though anyways. I keep getting weaker and weaker) but it's making me worse.

[looneymom]

I know you don't want to stop exercising but what about doing it only Monday, Wednesday, and Friday. If the mitro is the problem and getting worse, your body may need more time to recover. If this does not help, then you may have to stop so that you do not deplete your body of it's energy levels. Since the problem seems to be getting worse, I would get into a doctor as quickly as possible.

[trappedat20]

I'm actually only doing it twice a week now but it seems like it bothers me regardless. My doctor won't move me up and I wish I didn't have to wait until May 2nd. It's really hard to figure out if the problem during these episodes is that I'm not getting enough oxygen because of dysautonomia doing crazy things to my heart, or if I'm not using oxygen efficiently because of a problem with the mitochondria. This has become a big game of trying to figure out what's the dysautonomia and what's the primary condition. I noticed I have problems getting enough oxygen even without my heart being crazy though so I'm unsure. I def want to look into this mitochondria thing though. I'm debating staying with my dad for a week in Massachusetts and seeing a mito specialist there. There aren't any here. I want to feel really certain that's what it is though before I have my husband take off work for a few days and drive all the way there from Tennessee. I'm not sure if Bluecrossblueshield covers you in different states but it seems like other people here see specialists in different states.

[looneymom]

Call your insurance and find out. I have to have referral sent by our doctor to go see someone out of the state. Unless the visit is approved, my insurance will not pay on visit or testing or medications.

[trappedat20]

Oh wow thankyou. I never even thought of that. I guess what i'll do is on May 2nd ask my neurologist if he can test me for mitochondrial disease and if he doesn't know enough about it I'll ask him for a referral then. Good idea. ty

[IceLizard]

Sorry to hear about another episode. The muscle weakness and loss of muscle tone also points to problems with mitochondria see here: http://www.bcmj.org/articles/mitochondrial-disease-clinical-manifestations-overview

Please be very careful not to overly tax your body, it can be dangerous if you do have mitochondrial disease.

Do you have a finger pulse oximeter to monitor your oxygen levels and heart rate? If you are turning blue it could help you or someone near you see more clearly what is going on. I just ordered to replace mine. Here's a list on amazon: http://www.amazon.com/s/ref=a9_asi_1?rh=i%3Aaps%2Ck%3Afinger+pulse+oximeter&keywords=finger+pulse+oximeter&ie=UTF8&qid=1397367475

[trappedat20]

What happens if you overtax your body and your have mitochondrial disease? Can it kill me or will it just make me feel sick? I'm trying to figure out if it will really be that dangerous when I try to push through. No, we keep meaning to get one and still haven't. I really need one though. Maybe it can help me avoid these episodes sometimes if I know it's getting too bad.

[IceLizard]

Well, too much activity can actually cause the muscles to break down, which also puts stress on kidneys. See here:

From http://mda.org/disease/mitochondrial-myopathies/signs-and-symptoms

"Exercise intolerance, also called exertional fatigue, refers to unusual feelings of exhaustion brought on by physical exertion. The degree of exercise intolerance varies greatly among individuals. Some people might only have trouble with athletic activities like jogging, while others might experience problems with everyday activities like walking to the mailbox or lifting a milk carton.

Sometimes, exercise intolerance is associated with painful muscle cramps and/or injury-induced pain. The cramps are actually sharp contractions that can seem to temporarily lock the muscles. Injury-induced pain is caused by a process of acute muscle breakdown called rhabdomyolysis, leading to leakage of myoglobin from the muscles into the urine (myoglobinuria). Cramps or myoglobinuria usually occur when someone with exercise intolerance “overdoes it,” and can happen during the overexertion or several hours afterward."

Also check out this link for beneficial exercise and Mito disease: http://www.mitocanada.org/about-mitochondrial-disease/how-is-mitochondrial-disease-treated/exercise-and-activity/

Besides the muscle issue, you are turning blue. I would try not to push through because turning blue is a serious indicator of lack of oxygen. People have died from mitochondrial disease, but the presentation is so variable that it can run from very mild to life-threatening, so I can't really say for sure how much danger you are in. My pulse oximeter does help me to avoid episodes or be able to treat them early, before I am in a full-blown attack.

[trappedat20]

I was always that go, go, go person who was super ambitious and would push myself way too hard and it's at the point I really need to take a step back and stop. My husband won't even allow me to push myself anymore. He's cleaning the house right now because the landlord is coming for the quarterly inspection Tuesday and he won't let me help because he knows I'm too sick and knows that I'd be risking hurting myself out of guilt. He seriously wants me to stop weightlifting too. I don't know why it's such a big issue for me because I'm not increasing on strength or mass because my body is being stupid so I'm practically going there and wasting my time and getting sick for no reason. It was one think when it was only the dysautonomia that was apparent and I would just get super dizzy and tired but now that I'm turning blue, having seizures, and stuff like that and it's possibly from mitochondrial disease I really need to take a step back and listen to my body. Not sure what to do about the exercise thing. I appreciate the link btw. It's obviously making me sicker afterwards which should be a sign I should stop but I don't want to just do nothing, but I'm not quite sure what I can do. Weightlifting use to not make me sick when first started in November to help with the dysautonomia but now it makes me very sick. I guess I'll just have to try different things and see what doesn't make me feel like someone stole all of the oxygen from my body.

[Chaos]

MakeMe- I can totally relate to being the Go, Go, Go person who pushed thru everything. If you had told me 5 years ago how I would be now, I would never have believed you. The first 4 years after I got sick, I was sure that exercise was going to be the cure if I could just find the right kind. Now I wonder if I would have backed off early on if I would be in better shape than I am now.

Sarah Myhill MD recommends that you don't do any exercise until you feel absolutely ok doing nothing and have energy left over at the end of the day. That's what you need to allow healing to occur, she says. Then, once you are in that situation, she has you start adding exercise in very slowly, once a week doing specific exercises that build mitochondria. However, until you are in that position of feeling absolutely ok doing nothing, she recommends you cut back more and more and more until you are.

When you have been that go-getter all your life, it's almost like you need a personality change to do what she recommends. She recognizes this and says that the personality of the people who tend to have this condtiiton is the wrong type to heal from it. Welcome to the club.

[trappedat20]

@Chaos you are like my mitochondrial disease guru lol. I always get excited when you reply because I feel like I'm going to learn something new lol. Please don't stop talking to me about it because I feel like you give me so much clarity and I trust what you have to say.

It's funny because around the time I got sick I was actually pushing myself really hard. I had my first seizure January 8th 2013 and then between then and June 2013 weird symptoms kept happening but I still didn't consider myself sick nor did I know I would be disabled and very sick by June. During that time I was exercising obsessively (dancing several hours a day) and I had my first job where I was on my feet for 5 hours a day without sitting down. I know I would have gotten sick regardless but I wonder if all of the stress I put on my body is what triggered me to get sick then.

I never felt quite right as a teenager but it was never anything that made me think oh my gosh something is def. wrong with me. I was always tired and fatigued but I never really looked into it. It wasn't anything like the debilitating fatigue I have now. I just felt like no matter how much I slept I always felt tired and like I didn't want to do much physical activity. It was something I could push through at the time to get what needed to be done done, although now I can't even push through it because of how bad it is and the seizures and tachycardia that accompany me trying to push through. I had to push through the fatigue to study because I wanted to keep my straight A's, and push through the fatigue to go to do workouts (which use to be normal workouts) because I wanted to be fit. As a result after I did this I spent the weekends "catching up" by just staying on my laptop or watching tv because I didn't have the energy to do anything else. I always just figured it was normal because I had one of those mothers who tried to normalize everything and tell me that I wanted to be sick if I ever complained of anything. I was also dizzy sometimes out of the blue. I've never been able to run. I don't know why but for some reason every time I would try to run or jog my heart would get too fast and I felt like I couldn't get oxygen and I'd feel dizzy. Like a light version of what I get now only it would only happen with running or jogging. I sometimes wonder if the signs were always there that something wasn't quite right with me but since they were so vague I brushed them off until the point I was so disabled and sick I couldn't brush it off. Does mitochondrial disease sometimes work like this? I always talk about the onset of the dysautonomia starting in January 2013 but not getting full blown until June 2013 but I wonder if my body slowly started breaking down long before then?

My biological mother has MS which she got around the same 20/21ish (my age now) and I read that MS can be a form of mitochondrial disease. She's now 36 and although her MS is progressed all she has is MS and Depression but I read somewhere that MS is sometimes a form of mitochondrial disease. My half brother is developmentally delayed. He's 10 years old and he's smaller than everyone in his class and a little bit slower but it's not something that is obvious. Most people don't even know that he's developmentally delayed. My great, great grandmother had Alzheimer's when she passed. My biological grandmother died about a year ago and she was in her fiftys and it was due to some kind of problem with her heart. I don't know anything about my biological father but I heard only the maternal side matters anyways. I'm trying to find out if there is some kind of genetic thing going on. It seems like with my grandmother that could be chocked up to her lifestyle (she was a heavy smoker) and with my great grandmother it could have been age but I wonder if the problems with my biological mom and half brother could indicate that there is some kind of mitochondrial disease that runs in the family. It's so hard to say because neither of them have had any other problems emerge besides what I've mentioned and I thought with mitochondrial disease that multiple organ systems are always effected.

I had some problems as a baby/toddler but it's hard to figure out what is from being in neglectful homes and what is medical. When I was a toddler I was in the hospital for several weeks because I had trouble gaining weight and keeping things down. I had very bad speech problems and was in speech therapy until I was 8. I wasn't potty trained until I was 5, which is pretty old. I have bad ADHD my whole life too but I don't think that's related lol. I also had shingles twice when I was 12 and when I was 16 and I'm not sure if getting it so young and twice is an indicator that something was probably wrong. I'm sorry for all of the information. I'm just trying to connect the dots.

I know what you mean about needing a personality change to do what she recommends. I've finally gotten to the point where I don't push myself too hard around the house. I only push myself every few weeks when things get too out of hand and I can't stand the mess anymore. I've accepted that I can't get a job or go to school right now. The thing I push myself the most with is doing the workouts because I keep thinking that for dysautonomia I can't allow myself to be deconditioned but I never though about what my primary condition might need. It's very obvious at this point though that exercise is making me worse. I also wonder if I should try to move downstairs to avoid the stairs for now on. The thing I'm worried about is that I'm going to give up everything and they are going to tell me that it wasn't mitochondrial disease after all and chastise me for not getting any physical activity. I'm also worried that I might not wind up having energy replenished and be able to slowly build up. Okay, yep I probably def. need a personality change to deal with this lol.

My neurologist appointment is May 2nd and I'm going to ask him to run some tests for me and if he doesn't know how or what to do that I'm going to ask for a referral to a mito specialist (which will be out of state.) I'm not quite exactly sure what to ask for to have run and how accurate these tests will be. I heard that a lot of times you can have it and have tests still come back negative. I'm petrified of having a muscle biopsy and I know the anesthesia will make me extremely sick so I'm trying to avoid it if I can.

Again, thanks so much Chaos. I love talking to you because you seem so knowledgeable on mitochondrial disease. Anatomy stuff I tend to look up and research until I understand but Mitochondrial Disease is just sooo confusing and I've always hated biology and had trouble understanding it.