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/

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.

That is such super cool news Kris!! I am so excited to hear that it is working for you. Makes me wonder again about all the research showing cytokine involvement in this and how much of a factor that is for so many of us. I suspect it's common. Congrats on finding something that is helping you!

elizabeth- I PM'd you

http://www.riken.jp/en/pr/press/2014/20140404_1/ The above is a study out of Japan discussing how they are finding lesions on PET scans in ME/CFS patients brains that correlate with the symptoms that the patients are complaining about such as memory loss, headaches, etc. They have been discussing finding UBOs (unidentified bright objects) in the brains of ME/CFS patients for years which radiologists have been blowing off but which researchers have been thinking are significant. The specialist I see has said that they have been found to correlate with appearing when people have "flares" in symptoms and disappearing when they are in remissions. They don't know exactly what is causing them but do think they are related to the disease. Since so many people with the disease have migraines as a comorbid condition who knows what comes first.

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.

http://www.cortjohnson.org/blog/2014/04/07/report-san-fran-iv-moving-forward-exercise-findings-pointing-mitochondria/ If you read thru the above article you'll see some related info about breathing issues and suspected mitochondrial/energy issues. They're finding more and more info related to the physiology of what they suspect is happening. Now they just need bigger studies to confirm it. While this article is specific to ME/CFS, since there is so much overlap between ME/CFS and dysautonomia, it likely applies to a lot of us who experience these types of issues such as breathing problems, exercise intolerance, weakness etc.

TCP- Yes, you folks in the UK have really gotten the raw end of the deal on ME/CFS it sounds like. It's quite pathetic what you are being offered in the way of treatments. Hopefully enough research will start emerging from other places that the folks in your NHS will be forced to acknowledge their wrongs and start providing real treatments for you all. I'm so sorry for the way you are all being treated. Although, I must say the research coming out of Newcastle England is very exciting for both ME/CFS and autonomic dysfunction and the tie in between the two. They are doing some great research up there. Very exciting. Frankly finding treatment here in the US is not much better unless, likewise, you shell out lots of money and travel cross country to find specialists who know more, but at least it's available. Best wishes!

Thanks for posting Katie. Interesting findings. Wish more centers would look for these things instead of just apnea when they do sleep studies.

There are some more that treat with antivirals as well, including Klimas, Rey, Kogelnik, Levine and some others. They have varying approaches to how they use them however. My doc seems to think that for the people who are helped by antivirals that their OI symptoms improve as well. He's had a group that were able to return to work full time with treatment. They don't help everyone though. There's a big study going on now on the role of HSV-1 (Herpes Simplex type 1, the cold sore virus) and it's role in Fibromyalgia and possible treatments for it. That's how I've been describing my symptoms for years...like having a never ending case of the flu- without the fever and cough.

My sleep cycles got totally messed up when I got sick. One thing that my PCP and the sleep medicine doc suggested was doxepin (sp?). However, my POTS doc didn't like the idea so I never tried it. I have seen other people with ME/CFS who've had good luck with it though. The other suggestion the sleep medicine doc and ME/CFS doc had were to just go with my body's new sleep cycle. I kept trying to use meds to go to sleep at a "regular" time. They suggested waiting until I was tired and going to bed then. Since I tend to feel best and have the most energy at night, I have moved my "normal" bed time to 4 am. Now I can fall asleep within 10 minutes without meds. Still have too many awakenings during the night and have other sleep issues, but at least not tossing and turning trying to fall asleep.

That's a great resource page Rachel. Has so many of the sources all in one spot. Thanks for posting it!

When I first became ill with this, I had a post-op infection that made me really sick and I never recovered from the illness. After 8 weeks, my doc did viral titers and several came back really high so he decided I must have had mono (at the age of 46!) and that's why I was still ill. My own research led to the POTS diagnosis and then last year I saw an ME/CFS specialist/researcher. He said they think one of the tie-ins between ME/CFS and POTS may be that the viruses get into the baroreflex receptors and other portions of the autonomic nervous system where they hide out and then reactivate from time to time. The problem (he says) is that the viruses don't stay in the blood so blood tests and titer levels are not a good way to tell what's going on with them in the body but they are one way that the docs have currently to try to measure what's going on. They know the viruses get into the nerves and they think they get into the brain and bone marrow. He said most adults will have a gradual dropping off of IgG levels over time after initial exposure to a virus but for some adults, they are finding that they are carrying high levels of IgG to several viruses as though the immune system can't fight off the viruses and is therefore constantly making antibodies. They are having some success, with some patients, by treating them with antivirals to help decrease the viral load. This is where the NK cell FUNCTION test comes in. A lot of people with ME/CFS have been found to have decreased NK cell FUNCTION (not count). Since NK cells patrol for viruses and mutating self cells (tumor cells), having a low NK function would make sense along with high viral loads. A recent study released also suggests that ME/CFS patients have higher rates of cancer vs the national average, which also makes sense in this context. If you want to explore this Sue, you probably want to see someone who specializes in CFS or "neuro-immune disease" or CVID or has some knowledge of it. Your standard immunologist probably won't be up on the latest research on this stuff and will blow you off. The specialists will usually run a large panel of tests looking at many different viruses, bacteria and perhaps fungal infections (based on your symptoms) to see what part of your immune system may or may not be working correctly.

I've had some of those same episodes myself and wondered the same thing. Contributes to the "is it REALLY all in my head, afterall?" thinking that goes on at times. And yes, it IS wonderful to feel almost normal again and realize that yes, there is a HUGE difference between what has become the new norm and what used to be normal. Personally, I think that adrenaline does play a big role in those situations because for me anyway, when I've had those episodes, I can only go so long before it's inevitably followed by a massive crash. And, even though I feel pretty good and mostly assymptomatic, I've found if I'm really honest with myself, I'm also really keyed up, pretty hyper, more irritable and edgy and it's not a "normal" feeling good/balanced energy that I have. It's more of a "driven"-"have to get it done"- "critically important to survive" kind of energy. In other words, it's not like I can just be up and doing some things, feeling good and then sit and relax and enjoy myself. I find I have to keep moving and pacing, can't sit and can't sleep during those periods as well. That's why I think something shifts in the neurochemistry that allows me to function at a much higher level but also why it's not in a normal, balanced, well regulated, healthy manner. And then, I crash and can't move at all for days or weeks. During which time I wonder if I just dreamed that I was able to accomplish everything that I just did. And figure that everyone REALLY thinks I'm a flake now after seeing me up flying around for the past week or so. Ugh!

I remember periods of time where it seemed I couldn't lie in any position to sleep. On my back, I'd wake up gasping for air and it killed my low back. On my sides, my HR was so high and pounding so hard it would literally feel like my body was rocking back and forth. On my stomach killed my neck and increased my migraines. Seems like it's all been better since we elevated the head of the bed a few years ago.

Hey Sue, and anyone else who feels like their airway gets blocked when they sleep on their back- Check out this link http://www.centerforsoundsleep.com/sleep-disorders/upper-airway-resistance-syndrome/ For all of us with EDS or Joint hypermobility and tissue laxity, this is very likely to be a problem. Also a study out of France apparently found that 50% of "older women" had this anyway, regardless of EDS etc. So a very common problem that might be contributing to some of the sleep problems we experience. Of course, yet again, not a commonly diagnosed or well known problem- yet anyway.

I haven't had one in a few years, so not sure if it's because of the med combo I'm on or if it's just a function of time in the disease process. I know some of the research on ME/CFS now is indicating that there is a significant difference between patients who've been sick for less than 3 years vs those who've had the illness for longer. All the attacks I had like this were in the first couple years of the disease. One thing that helped was to avoid triggering them. I know that sounds stupidly simplistic, but my POTS specialist emphasized to me that there is a certain amount of "learning" or sensitization that occurs in the autonomic system. He stressed that it was important to try to avoid doing anything that set off ANS symptoms in the first place, as much as possible, so that the system wasn't on such a "hair trigger" to be fired off and over react so quickly and violently. Using the combo of non-pharm and pharm solutions that we figured out over time seemed to work for me. At least I never had another episode like this once I saw that POTS specialist. Hyper POTS patients sometimes don't react well to beta blockers so you might need another drug option. Are you having a follow up at Mayo or with another doc to work on finding some kind of med protocol that might help balance your ANS symptoms? Sorry you're having to deal with these. They are NOT a fun time.

Hi. Sorry to hear you are experiencing this. Sounds somewhat like things I used to have when I was ill for the first couple of years. Here's a link to a video of someone having tremors similar to what I used to experience. Like you, I would be freezing cold, unable to talk, with lots of other symptoms I can't even remember now. I think I would usually get really low BP though. I have both POTS/NMH and ME/CFS. Suspect these symptoms were from inflammation in the brain and autonomic nervous system caused by either an autoimmune reaction to the primary infection that caused my illness, or to a viral re-activation that occurred at the time the symptoms occurred. I wonder if POTS and ME/CFS aren't subsets of the same disorder- or the same thing in many patients.

Just curious Katie if your immunologist is thinking that any of your neuro symptoms could be from CNS issues caused by inflammation due to the Lyme or other infectious or autoimmune issues rather than coming from your neck? Is that why he's concerned? Or does he think your body is just too stressed now to undergo such major surgery?

I don't know that it's specific to Mayo that they do the 10 min TTT. Think it may be more the difference between a Neuro TTT and a cardiac TTT. When I was at Cleveland and had one done in the cardiac clinic it was 45 minutes. The neuro wanted to do one as well but his version was 10 minutes. So I think they are looking at different things in that time frame. I know at Mayo when I had the 10 minute version, I was hooked up to a beat-to-beat monitor which was checking BP/HR constantly and not just every few minutes like they did with the cardiac TTT. Based on the tracing they got from that, the doc was able to use that info to further confirm his thinking about what subtype of POTS I had.

Katybug- I was thinking that same thing. Unless we're hooked up to a beat-to-beat monitor like they use at the autonomic testing centers, it's impossible to know what's really happening with our VS. A once-and-done reading isn't going to tell us anything given how fast our numbers can change.

Sounds like you have it under control...or as well under control as it can possibly be in such a situation. Really glad you have good support at home. Sorry you had docs drop you like that. It's a sad commentary on the state of medicine today when docs can't (or won't) even attempt to help people because they're "afraid" to do so. Hopefully you'll find some who are more willing to be helpful in the near future. There are docs out there who haven't yet become such cowards. If they all do become that way, patients like us are in a world of hurt.

Someone else on here (Sue? Katybug? Can't remember, sorry.) pointed out once that their doctor had mentioned (regarding blood sugars) that although the number you observed upon testing might be fine, that there might have been a sudden or rapid drop that preceded that normal number which caused your symptoms and which you didn't see. I often wonder if that might not also be happening with our VS.

AshleyPooh- I'm always amazed at how many time Ankylosing Spondylitis comes up in these forums considering how rare it is in the general population at large. One of my son's has it and 2 others have the gene for it, as do I. I often wonder what the tie in with TNF-alpha is between POTS and AS. I know when I go off my Wellbutrin my POTS gets much worse. I read an article last year discussing how Wellbutrin is a strong TNF alpha inhibitor (besides affecting dopamine and norepi). Given how frequently I see people on here who either have AS themselves or have a close family member with it, it sure seems like there must be some connection there somehow.

Yes, and the literature, particularly Dr. Julian Stewart's research I believe, has shown that even though it's called "Positional" that when they look at the data, there is evidence of autonomic abnormalities even in supine.