Chaos

I had bad side effects from taking methylfolate the first time it was prescribed for me. I am taking it again after being on a lot of various supplements for awhile first and now am tolerating it much better with good results. Personally I've found I need to take fairly large doses of potassium along with it to help reduce some of the muscle pain that occurs with it. When my muscles are having that "burning" pain, I find potassium citrate (which ironically is akaline apparently) to be most helpful. When I don't have the muscle pain, then I find potassium gluconate to be most helpful. Have you by any chance done 23 & Me to explore the various SNPs associated with this issue?

Sorry...IOM= Institute of Medicine...a nationally recognized independent body that has considerable clout in the medical community. ME=Myalgic Encephalomyolitis- the name most people with "CFS" prefer be used as it better defines their symptom set. It's the name that has/had been used in Europe for decades until the CDC changed it in the 1980's in the US and other places started picking up the terrible name of "chronic fatigue syndrome." SEID= Systemic Exertion Intolerance Disease- the new name that IOM is recommending be used rather than ME/CFS as they feel that intolerance to activity, and in fact worsening of symptoms after any type of exertion, is one of the hallmark symptoms of the disease. Here is a link to the brief version of the IOM report that was released Feb 10, 2015 https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf Here is a link to the site where you can get the full version of the report. http://www.iom.edu/Reports/2015/ME-CFS.aspx Here is a link to the Canadian Consensus Criteria, which some patients still think is the better diagnostic criteria for the disease. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf Hope this helps.

I get those body aches/pains all over (arms,legs, back) a lot of the time. They are miserable, so I can truly feel your pain. Sorry to hear that you are having to endure this as well. Not sure if it is technically dysautonomia related and it gets confusing because there is so much overlap with this condition and ME/CFS/SEID which also overlaps a lot with fibromyalgia. Now that IOM has made dysautonomia one of the "hallmark" symptoms for ME/CFS/SEID it gets even more confusing. Hopefully they will soon determine subgroups for both dysautonomia and ME/CFS and then, I suspect, we will see that there are a lot of us with the same thing....whatever that thing is called. GI issues are also very common both with dysautonomia and ME/CFS.

I believe they check a pyruvate and lactic acid ratio at times when looking for mitochondrial disease. I had the tests run and both were abnormal but can't remember exact numbers. I have looked into these a little bit because it seems to me to be related to the burning I get in my muscles with any type of activity. I also think it may explain the shortness of breath and breath hunger I get at times since your carbon dioxide levels change and breathing rates change when you start getting too acidic. I have tried some supplements to balance pH but didn't have great success with them. I've had better results with supplements that help the methylation cycle and ATP/mitochondrial function. When those things are more balanced I have fewer of the other symptoms like muscle pain.

I am taking acetyl-L Carnitine, Carnitall and L-Carnitine Fumurate. They are all over the counter or available on line (cheaper). I don't take all of them every day, but they do seem to help.

Interesting that he suggested the IVIG for you. When I saw him (I think we see the same doc in AZ) in Feb, I was asking him about it as my SEID (ME/CFS) doc is recommending it for me. I have an appt with my ME/CFS doc (in CA) in a couple weeks so will hopefully get more details then. I know Arizona Girl uses IVIG regularly and gets some positive results with it. You might want to pm her. Let us know what you decide please?

As others have suggested, I suspect it's related to MTHFR mutation. The C677T mutation seems to be related more to high homocystiene levels than the A1298T mutation. I have seen one EDS specialist from South America speculate that this mutation may also play a role in the EDS component so many of us have. Since these genes affect how we utilize B vitamins, especially folic acid, he theorizes that just as folic acid deficiencies in pregnancy can cause spina bifida, our mutations may somehow affect connective tissue development. Depending on ethnic background, up to 40% of a specific population may have this mutation. However, my ME/CFS doc says that 95% of his patients have these mutations so while it may not be THE cause of our symptoms, he feels like it's a big player in the whole picture. Treating it with supplements has certainly improved many of my symptoms. The whole methylation cycle (which is what the MTHFR mutation affects) is incredibly complicated but there's a lot of info out there on it if you google it. Your PCP can order the basic tests for the two mutations I've noted above or you can do something like 23 & Me for more complete gene data. You then download your raw data from 23 & Me to one of several sites like Genetic Genie, Promethius, MTHFR support or another site which will then give you more info on the genes you have that may be playing a role in this issue.

Glad it's providing you with some relief. Personally anytime I am around strong aromas it triggers my symptoms but we're clearly all different so nice to know it's working for you.

http://mdwme.blogspot.com/2013/04/dr-paul-cheneys-latest-observations.html http://cfspatientadvocate.blogspot.com/2013/04/lisa-petrisons-comments-and-notes-on-dr_23.html http://www.cortjohnson.org/blog/2014/08/25/cheney-chronicles-protocol-chronic-fatigue-syndrome/ Hi Sue, Here are some links to summary articles about VIP being used to treat symptoms of low cardiac output which Dr. Cheney believes is the cause of a lot of dysautonomia type symptoms. The first link has his actual videos if you want to watch them, or you can scroll down thru the notes to places where they mention VIP. It's in several different places. Interesting that your levels are so high though as this sounds like he's using it as a treatment to improve symptoms in people.

I believe there is some overlap between EDS and Marfan in that they are both connective tissue disorders but I think the genetics are somewhat different. Marfan tends to have a more specific body type than EDS does. Those genetics appts are fun. They are very thorough about checking out your family history, at least in my (limited) experience. Have you looked into ME/CFS at all? Not sure if you had a post-viral onset of your symptoms or not, but that is not required for diagnosis. Here are a couple links you might want to check out. The first one is the 2011 International Consensus Statement on ME/CFS. If you scroll down to table 1 it gives the criteria for diagnosis. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full And here is the most recent IOM report on the condition which they now suggest be renamed SEID (systemic exertion intolerance disease). Their criteria also require autonomic dysfunction or brain fog for diagnosis. http://www.iom.edu/Reports/2015/ME-CFS.aspx The above link has a video where you can watch the presentation where they state the diagnostic criteria or you can look on the right side of the page if you want to download the 200+ page report. Since there is so much overlap between these conditions, it never hurts to have more info, in my opinion. My ME/CFS doc actually prefers to call this "neuro-immune-endocrine disease" because it affects all these systems as well as the GI system. Hope you have a successful genetics appt. and get some answers.

I too use a Polar HR monitor to watch my HR with all activities during the day. I had testing done at Workwell Foundation which showed that I hit my VO2 max (aka anaerobic threshold) at a much lower level than a normal person would. Now I use my HR monitor to try to stay below that anaerobic threshold with daily activities and thereby avoid the post-exertional fatigue that comes about after any serious exercise attempt that I make. Nancy Klimas (at Nova Southeasten University) has study data which shows that people with ME/CFS have a whole cascade of symptoms that are triggered by exercise (or exertion), including the autonomic nervous system having problems which then triggers the immune system to malfunction. She presented this data to the CDC and a transcript is located here. http://www.cdc.gov/cfs/meetings/cfspcoca-01-2013.html Information on the Workwell Foundations study, the latest one was published in Physical Therapy (journal), is located at this link. http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short If I exercise and get my HR up to a "normal" aerobic level, I have noticed my HR will stay elevated for the rest of the day and sometimes for another 24-48 hours afterwards. It also triggers a whole bunch of other symptoms. This has been a hard lesson to learn as I always liked to exercise in the past.

Sorry you're struggling with migraines. They are one of the worst symptoms I had. I tried Gabapentin but stopped because of weight gain and increased cognitive problems. Then I moved to Topomax which worked better. Cut the number of headaches I had in about half and even those were much less severe. When I saw an immune specialist, he put me on antivirals. It took about 6 months but then I stopped having migraines altogether. Didn't put the two together until he had me stop the antivirals and within 5 days I was back to having nearly daily migraines. Started the meds back up again and am back to going months at a time without a headache. I was also able to stop the Topomax without having any increase in headaches once i was back on the antivirals. I have also found magnesium to be helpful in helping my migraines.

How frustrating for you. Sorry you weren't able to come away with a clear diagnosis. It seems odd that he is basing his assessment of your condition on the fact that your BP didn't drop below 115. By definition POTS is a rise in HR without a drop in BP....If your BP drops, it's normal for your HR to rise as a compensatory mechanism. The thing that makes POTS unique is that you get a HR rise without a drop in BP. I've had 6 TTT- 3 of the 10 minute variety and 3 of the 45 minute variety. The neurologists tended to run the 10 min ones while the cardiologists tended to run the longer ones. I only had symptoms show on 1 of the 3 10-minute versions but clearly had severe symptom onset with the longer ones. I have Ehler's-Danlos and have also been diagnosed with ME/CFS as well as the POTS and NMH. Personally I think these are all parts of the same disease, whatever you want to call it. I second Katy's idea about getting your raw data from the test so you can take it with you elsewhere when you see another doc.

I know Paul Cheney MD has talked about VIP and it's relationship with ME/CFS patients. I'll try to find the link to the video in which he was discussing it. Given how many ME/CFS patients have associated dysautonomia, this is very interesting. Please keep us posted on what you find out.

I'm so sorry you are having a hard time finding treatment options. Not sure if you had any "exposures" while you were a veteran but you might want to check out Nancy Klimas and her crew at Nova Southeastern University in Florida. She studies ME/CFS (which overlaps a lot with dysautonomia) as well as studying veterans with Gulf War Illness. It might help you get seen by someone who is familiar with your list of complaints. If you Google her, you can find a lot of info about her program. Just an idea..... Thanks for your service to our country.

Hmmm...Sue...Chili Cheese Fritos suddenly sound delicious. Can't tell you the last time I ate them but wow...they sure sound good at the moment.

Hi Sarah- Here is a link to a type of cooling towel. http://polarbasics.com/ There are other brands available as well online and in stores. Can't recommend a particular brand as I haven't really used it yet, but a couple of my friends LOVE them.

I think there is some overlap between POTS and IST (Inappropriate Sinus Tachycardia). From what I've read and my cardio has said, they may fall along the same spectrum but with IST you tend to have faster HR most of the time compared to POTS. It's not so position driven like POTS is. Perhaps others can explain it better. Hope you get some answers this time around.

There is a cooling towel that a friend of mine gave me for Christmas. She said it works great for her hot flashes. I will try it next summer but right now it's cold here so am dealing more with Reynauds type symptoms currently. I remember earlier in the disease process I was sweating a ton but it seems to have calmed down most of the time for me. I'm on so many different meds and supplements now though that I don't know what has helped it. Sorry! Hope you can get some relief.

There seems to be a subgroup of dysautonomia patients who have MCAD along with POTS. They frequently also seem to have connective tissue disorders, like EDS. Traditionally it's been thought that Hyper-POTS patients were the ones to have MCAD along with POTS. I have "neuropathic" POTS but seem to have a hyper-POTS component that includes MCAD symptoms as well. Here's a link to a paper by Dr. Afrin who has seen a fair number of POTS patients on here. http://forums.dinet.org/index.php?/topic/23981-comprehensive-mcas-paper-by-dr-afrin/?hl=%2Bdr+%2Bafrin+%2Bpaper Mast cell symptoms can include GI symptoms, hives, rashes, breathing issues, etc. It really is multi-systemic.

Really glad to hear from you and know how you are doing. Have been looking for a post from you for a long time to see how the results of your tests came out. Really glad you got those tests done because back when we were discussing Mito disease your symptoms, while initially sounding like it might fit, certainly didn't when you were getting sicker and sicker. So I am very relieved to hear that you got a correct diagnosis and some treatment. Are you on oxygen? My cousin with Pulmonary Hypertension has been on it for many years and it seemed to help her. Her cardiologist just told her last month that she could stop using it and she's happy to be free of it now. Thanks for posting and letting us know how you are doing!

Congrats on the pregnancy. Sorry to hear about the GI flare. I'm guessing they won't do the scope now as they won't want to introduce anesthesia at this point? If you do end up doing one at some point, you can ask your doctor to request special staining for mast cells from the biopsy samples. I have had a really hard time getting any positive lab tests to show up for mast cell problems but when they did the special staining on my biopsies, they showed up with lots of extra mast cells in all my samples. The tissue looked fine upon exam (for the most part) but the evidence showed up when they did the special stains. EE is also being found to be very common in this population. Hope you can find some relief soon. Best wishes for a smooth pregnancy. Maybe the added blood volume will help your POTS symptoms.

Thanks for all the reference articles. As usual you find lots of interesting info. It has been consistently documented that people with ME/CFS and several other versions of neuro-immune-endocrine disease have low intracellular magnesium levels. Even if the blood levels are normal it doesn't seem to be getting into the cells. I've heard many of these specialists describe how difficult it is to get magnesium levels up because it's not always well absorbed from the GI tract. Some docs recommend epsom salt baths (or footbaths) as the magnesium can be absorbed thru the skin. Some recommend injections to help. I personally have done ok with oral magnesium and it definitely has helped several of my symptoms. Sure hope Tyler can get a break from some of his symptoms sometime soon. He sure has been given a rough hand to play.

As Katybug said, it may be the tomato and not the pasta/gluten causing the problem. And if it is the tomato then there may be a whole bunch of related foods that might be causing you problems as well. Or it could be an additive in the sauce or onion or garlic or.... the list is endless. There are some tests that you can have run (ALCAT is one but there are others) that will give you an idea of what you may have sensitivities to if not outright allergies. I keep suspecting that I may have food sensitivities but they are so inconsistent that I can't pin anything down. Am considering doing some of the specialized testing but it is pricey. Good luck figuring it out.

It's possible to buy a relatively cheap blood sugar monitor at the drugstore (in the US). The strips are the expensive part but some brands are cheaper than others. Then you could track your blood sugars to see what's going on with them if that would be something that would interest you. I had hypoglycemia diagnosed by the test that Katybug described. Was given a monitor by my PCP after that. I've found that a lot of times I don't have actual hypoglycemia even when having the symptoms. In those cases I've been told it could either be due to my levels dropping very quickly even though they are not technically in the hypoglycemic range (<60) or it could be my dysautonomia causing the symptoms that mimic hypoglycemia. If your symptoms improve with eating, it's likely to be related to your blood sugar levels. Some docs suggest that waking during the night with symptoms, or just restless sleep in general can be due to blood sugar fluctuations. They have various things they recommend to help with this, depending on who you talk to. It's a miserable symptom so I hope you can get something figured out related to it and find some relief. A higher protein diet, small frequent meals and avoiding simple carbohydrates helps me quite a bit.