Chaos

So happy and excited for you, Sarah! Sure hope it continues to do well by you.

I had paresthesias in my arms and legs as well in the past. Seems like it got better when I started taking more B vitamins. My B vitamin level was in the normal range but very low normal. Now it's actually a little high but the numbness and tingling etc in my body has gone away for the most part.

I've been using an app called FibroMap to track medications, symptoms, pain, sleep etc. There is also a site called HealClick which allows you to set up tracking for your meds and symptoms. It also allows you to include data on your activities, weather or anything else you think you might want to track. It has a way to analyze that data and show correlations between things as well. I use my Fitbit alarms to remind me to take meds and several pill boxes. I used MyFitnessPal for awhile. Have all kinds of notes everywhere to remind me about things but then I forget to look at my notes. Ugh!! After awhile though, I got tired of spending so much of my time tracking my life. I just want to LIVE it for a change.

Yay!!! This is super exciting news for both you and Tyler. So happy to hear all your research and efforts on his behalf seem to be making some serious signs of progress for him. Sure hope it keeps moving in an upward trend. Thanks for sharing the good news.

Thanks Rich. My doc is doing his best to get a dose as close as possible to the higher level needed for autoimmune disease as he's well aware of that difference.

Interesting Rich. Thanks for sharing. Just saw another article today which was talking about people with Celiac (diagnosed by biopsy) have a much greater risk of developing autonomic dysfunction as well. Definitely seems to show the links between neuro-endocrine-immune dysfunction occurring in many of these diseases.

Definitely have issues with itching and rashes. Thought it was MCAS related but as I've been playing with methylation and mitochondrial support supplements, I have found I can generally impact the itching and rashes more with balancing methyl B12, methyl folate and potassium than with all the antihistamines I take.

Sorry Lynnie to hear that you are struggling so. Not sure if you are in the states or not but you might want to look into seeing some of the ME/CFS specialist docs here if you are. I've been seeing one and he has been prescribing antivirals for me which have helped tremendously with my symptoms....both POTS and ME/CFS. Most of those docs seem to get the connection between POTS and ME/CFS. Depending on which study you read, anywhere from 30-70% of POTS pts have ME/CFS and likewise, ME/CFS patients have POTS. Have you looked at Dr Montoya's studies out of Stanford regarding HHV6 and ME/CFS? He's having some success with a subset of patients doing well with antiviral treatments, specifically Valcyte. He's not sure if it's actually the antiviral aspect of it or the immune-modulating aspect of the med that is helping people, but he's having some dramatic results with at least some of the patients. Hang in there. Hard when you're feeling so miserable but hopefully things will be better in the near-ish future.

Just got an email from my doc and he wants me to delay starting this until after my son's wedding at the end of June. He's afraid side effects may be problematic and interfere with wedding stuff, so guess it's on hold for now. Will keep you posted when I actually start it.

Personally I've found Ritalin (very low dose at 2.5 mg) to be most helpful. It does a better job at keeping my BP up than midodrine. Adderall (very low dose) put me to sleep and made me cranky. Any higher dose of Ritalin gives me jitters, tachycardia and a migraine.

Psalm- Not sure how it was decided on the SCIG rather than IVIG. Not sure if that is what my insurance will cover or what the doc specifically ordered. When I saw him last week he didn't say "why" it was that. He was just excited that it had been approved. If you end up doing the SCIG at some point, there is a co-pay card you can get that will cover deductibles and co-pays up to $4000. You have to get qualified for it before you start treatment though as they won't make it retroactive. Would be good to keep in mind for when you start your therapy, hopefully, in the not toooo distance future. Sarah- Honestly not sure what I hope will be the top symptoms it helps. My doc was saying that I may not notice much of a change while on it but he's hoping that in time, being on it will make it possible for me to get off some of the antivirals I'm on. I'm on high doses of a couple pretty potent antivirals which have helped me tremendously but every time I try to wean off, I flare up something horrid. Guess we will see.

Really glad to hear you are noticing some benefits! Hope they can keep the BP in check as well. Sad having a disease where you can't get too excited or it may undo the benefits of the meds. Sending hugs and support!

I just got approved for IVIG so will be starting it in the near future. Will keep you posted on how it goes. Actually I guess I will be doing the SCIG (sub-cutaneous IG) infusions that can be done at home independently. Like you Janet, I feel guilty taking it when others need it so much more but I failed the vaccine challenge and have low IgG subclasses so guess that qualifies me for it. My doc was saying they are finding it very helpful for many autoimmune things.

Hi and welcome to the forum. Glad you are getting to go to a top notch place like Mayo for evaluation. I have been to Mayo in AZ and Cleveland Clinic but haven't been to Rochester so can't say what their program is like. Looks like you have a comprehensive set of tests included though which is good to make sure they aren't missing anything. Hope you get some answers. Try not to freak yourself out too much in the meantime.

Interesting. I have had this happen frequently in the past. Never associated it with POTS but makes sense that it could be related. Can't remember when it started relative to POTS though.

You might also look into PEM (Post-Exertional Malaise) which is very common for people with ME/CFS/SEID and which overlaps a lot with POTS. Some people have more mental PEM and others have more physical PEM (or a combination). Studies have shown that people with ME/CFS do much worse on both physical and mental tasks after exertion. If you have ME/CFS, exercise may actually make you worse and can set off a relapse from which you may not recover. Here is an interesting link on the topic. There's a lot more on this topic if you Google it. http://forums.phoenixrising.me/index.php?threads/poll-do-you-get-pem-from-physical-exercise-are-you-sensitive-to-lactate-probiotics-or-prebiotics.37335/ For the first three years after I became ill with POTS, I kept exercising at a high level to try to "cure" it. It just made me worse and worse. Then I hit a place where I could barely walk to the bathroom. I still try to keep up some level of activity every day because I don't think staying down is good. Recently, with the combination of meds and new supplements, I am finally able to do some yoga again without crashing but any kind of aerobic activity still puts me back in bed.

A couple more thoughts about back pain.... Do you think she might have EDS (Ehler's Danlos Syndrome) as back pain is not uncommon with that. People who have that, also tend to have early onset arthritis. From where you are describing the pain it sounds muscular or perhaps organ in origination, although with EDS people can have rib subluxations that are also painful. Arthritic pain typically is worse in the morning and improves with movement. Same with Ankylosing Spondylitis. Does anything make the pain worse or better? The rule of thumb we learned in school was if you can influence the pain (i,e, make it better or worse by doing something) then it's likely musculo-skelatal. If you (the patient) can't change the pain then it's a red flag to seek out other medical care as it may be something else. Hope you can find some answers for your daughter.

Hi Corina, Sorry to hear about your friend's daughters. There is a doc in Belgium, Dr Kenny De Meirlier, who has a good reputation for working with people with POTS symptoms but also ME/CFS symptoms. The fevers are very common with people who have that diagnosis as well. I believe his daughter has this condition so he has been very active in research in this arena. This is one link to a short YouTube presentation that he did. There are others on the same page with more info. I have a friend who flies over to Belgium to see him and has been very happy with him.

Finding out which one of your tests was positive is probably an important first step. For example, having the A1298T variation, even homozygous, doesn't have as much of an effect as having the C677 positive- as far as methylation and homocysteine levels go. However, it is more involved with energy production and how you recycle BH4 to BH2 and back. Depending on which of those is positive, it will change which supplements are most helpful. Have you done 23 & Me testing? It gives you a lot more information on various genes that may be involved with all this and may help you sort out which supplements will be more helpful and which will be less helpful. One resource I've found helpful is this site where this person collected a ton of resources and info to help sort thru some of this methylation info. http://forums.phoenixrising.me/index.php?entries/caledonias-methylation-links.1744/ The Heartfixer site that they have listed in that link has a lot of good info as do several of the other sites. Good luck sorting thru all this. It's incredibly complicated and a lot of trial and error. I suspect that the POTS, mast cell, MTHFR and even Ehler's Danlos are all parts of the same picture. Just not one that is well defined or characterized yet.

Hi and Welcome. Sorry you have reason to be here. Not a guy but there are guys on here. If you search for posts by Ramakentesh, POTLUCK, andybones, RichGotPOTs you will find them. There are others as well, it's just the ones that I can think of offhand. Hope you find answers and support here. I believe they say it's 4 or 5:1 Women to Men ratio who are diagnosed with this. Since they think it may be autoimmune for some of us, that makes sense as that's about the same ratio of Women to Men who are diagnosed with autoimmune diseases. There is a doc in Florida who has documented the differences in the female vs male immune system which may account for this. Whatever your gender it's totally lousy having the disease. Hang in there.

I definitely had bad side effects when I did just methylfolate by itself or when I added in Methyl B 12. I've found I also needed to add a bunch of other supplements that help support the function of those two things. Those other items include things like L-Carnitine Fumurate, Sam-e, Acetyl L Carnitine, Potassium, Vitamins A, C, D, E, minerals, and active B12 (called dibencozide). Which mutation do you have? C677T or the A1298T gene? The C677T seems to be the bigger problem for most people although the A1298T seems to be involved in a lot of mitochondrial/energy production issues.

I was slow getting on to all this as well, mainly because I was so brain foggy I couldn't understand most of the research. My ME/CFS doc was the one who recommended getting the first MTHFR testing done as he says he is finding 95% of his patients have this mutation which is MUCH higher than the normal average population. After that I did 23&Me and NutrEval but still took forever to try to figure out what my results meant. One of the supplements that has helped me the most is NT Factor which provides mito support. That was one where I could literally feel a difference within days of starting it. I have a whole list of about 40 supplements I take (in addition to a ton of meds) but I don't take them all every day and have made myself MUCH sicker at times by getting doses wrong, even when following my doc's recommendations. Don't think it's something you should mess with lightly. I know it sounds wacko and I had a hard time buying into it myself, but I finally gave up and looked into doing self muscle testing with my supplements. You can google it and find youtube videos on how to perform it. I'm still not sure I believe it really works, but I can't argue with the fact that I have done much better using supplements since I have started testing them every day this way. Here is a link to one of the easier videos (3 min). (Because YouTube runs ads, they may delete the link, in which case Google Mystic Mandy self muscle testing.) Of course you have to use common sense as well. Also try not to control the outcome by wanting a test to come up positive or negative. And as she says, you need to be well hydrated and have electrolytes in balance before doing the test. On days where I'm really POTSie, I find my testing is generally not very reliable so I have to go more with intuition and common sense. It took me several months of doing this before I felt comfortable with the testing and like I said, I'm still not sure I truly believe it, but I am doing better so it's hard to argue with success. Hope this helps.

I live at 6000 feet and definitely feel a difference every time I go to Phoenix or San Francisco to see my specialists. Last time we drove to Phoenix I was rejoicing with my husband as we left that I was actually able to sit up on the way out of town as I'm usually crashed with lots of pillows and the seat reclined. About three-quarters of the way up the climb out the valley though, I could feel it descend on me like a blanket...that feeling of weakness and shortness of breath. It was so weird. My experience is just the opposite though when I go to lower levels, I tend to gain "water" weight and lose it within a couple days of my return.

Definitely have had the same reaction. My POTS neuro says this is very common and he strongly encourages me to stay away from anyone who is ill. Much easier said than done.

Good to see you back Julie. I had a colonoscopy and endoscopy last summer. My GI was aware of my health issues and had an anesthesiologist in the room to do the procedure with him. I also requested (and received) a liter of saline before the procedure, above what they usually give. My BP dropped 50 points just between the time they checked it in the waiting area and when they took me back to the procedure room so I was glad to have the anesthesiologist there monitoring things. All-in-all though, it was not too big of a deal and only took me a few days to recover from it. Much better than when I've had surgery and it took me out for almost a year afterward.