Annaliese Posted October 24, 2011 Author Report Share Posted October 24, 2011 I see you have mentioned the potential for a"myriad of potential sights of immune mediated pathologies". I have been wondering about this, particularly over the last few days as i have been trialing florinef. I have noticed my excessive thirst and dry mouth have disappeared perhaps indicating that without drug treatment, i have a problem with maintaining adequate blood volume. The low blood volume is registered, i feel thirsty, but somehow the water is not retained. I wonder what's going on here. Re MCAD, i dont trust that the studies reporting normal histamine levels in most patients means that there isnt an intermittent histamine problem in some people. Ive read many of the mcad posts and some people have typical mcad responses, their drs think they have mcad but its not been picked up through any test.Re mayo explanations. I think its not just mayo. Many of the papers explaining subcategories seem contradictory to me(but then again i could be misunderstanding something). Most frustrating is that pregnancy induced dys seems to largely be ignored in the literarure although everyone seems to use the same one liner quote effectively saying people who develop dys in pregnancy have a poor prognosis. Hmmm. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 24, 2011 Author Report Share Posted October 24, 2011 Btw, im glad you said that mcad could be the result of abnormal symp activity or NO levels. That gives me some hope (i dont know why as im not sure which condition is worse). Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 24, 2011 Report Share Posted October 24, 2011 When I was diagnosed with hyperadrenergic POTS at Mayo (NE 254 supine, 1089 upright), I directly asked the neurologist if the high NE levels were the primary cause of my symptoms. He replied that he believed that my primary cause was autoimmune neuropathy in response to having mono in 2006 (my POTS symptoms showed up 4 months after having mono). He said that my high NE levels was a result of an exaggerated response from my sympathetic nervous system. They told me to try mestinon and midodrine. Mestinon only caused my HTN, chest pain, etc. to become severe. Midodrine did the same, and so has every other POTS med I tried including florinef and ddavp. I just tried ddavp again today and had to take extra carvedilol in order to function because of the increased exercise intolerance, chest pain, HTN, etc.I did try clonidine and it plummeted my BP even in tiny doses (domperidone also did this unfortunately).My cardiologist said hyperadrenergic POTS is the hardest to treat, and that we'd just keep trying. I think the next option is octreotide. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 24, 2011 Report Share Posted October 24, 2011 Yeah its confusing because Vandebilt would call that 'neuropathic POTS' and Blair Grubb would call it 'partial dysautonomia'. The QSART test is quite useful at demonstrating neuropathy.Personally I like the Stewart / Medows break up into catagorising POTS simply by where the blood flow seems abnormal. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 25, 2011 Report Share Posted October 25, 2011 http://www.sciencedaily.com/releases/2011/09/110929122858.htmSomething of interest regarding autoimmune disease Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 25, 2011 Author Report Share Posted October 25, 2011 Wahooooo! I could kiss you for posting that link. Thanks Ramakentish! : ) Let's hope it takes less than 10 years before it translates to a drug treatment. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 25, 2011 Report Share Posted October 25, 2011 I havent shaved in days so it wouldnt feel good (kissing me) LOL.They even think that obsessive compulsive disorder could be an autoimmune condition. Imagine that - who knows what else. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 25, 2011 Author Report Share Posted October 25, 2011 Tremendous!My compulsive laziness might one day be treated! Quote Link to comment Share on other sites More sharing options...
doggus Posted October 25, 2011 Report Share Posted October 25, 2011 This is sooo interesting. I have POTS, EDS 3 and mast cell disorder all of which came in almost overnight after a hysterectomy. (Though looking back I already had fibromylagia so maybe they just got worse overnight). I also have OCD which has become MUCH worse with this condition. (So the idea that OCD is auto immune resonates).I was given a thorough going over by an immunologist and though everythign was negative including ANA they did find I have no C2 complement, which implies I have an auto immune disease such as lupus. Hmmm. Quote Link to comment Share on other sites More sharing options...
issie Posted October 25, 2011 Report Share Posted October 25, 2011 missmarple,Have same issues - EDS, POTS, mast cell and have had a hysterectomy. I think one reason is the over activation of the sympathtic nervous system intensifies the level and intensity of everything. Be it pain, the senses, emotions and possibly OCD. I wonder if it's more of a personality trait that creates part of the problems with this monster. Are we all sensitive, and intense individuals? Is anyone a really laid back, relaxed, take life as it comes type person? Or do we all take things personally? Might be a good Poll question. I think from being on this site - most of us are really intelligent, thinking and bright individuals - maybe some are on genius level. Could this be part of the issues?Rama,Do you have the study on the connection with OCD and autoimmune issues?Issie Quote Link to comment Share on other sites More sharing options...
doggus Posted October 25, 2011 Report Share Posted October 25, 2011 Issie - I so identify with you. I feel like my nervous system somehow went wrong after the hyst and left me in fight or flight mode. This intensifies the anxiety and OCD. Little things become SUCH a big deal. I can have a mast cell attack caused by anxiety over whether my son's coat is clean enough for school tomorrow! I am a highly sensitive super bright (sorry to be cocky!) woman, always have been. I take things personally.Issie - have you found anything that helped? I am on mast cell stabilisers and they have helped a little but not much. I find drugs to be pretty intolerable. Have you found anything non-drug helpful? I want to turn off my nerves! Quote Link to comment Share on other sites More sharing options...
bensman Posted October 25, 2011 Report Share Posted October 25, 2011 Issie -I have often wondered that, too. I am a definite Type A personality. I, too, have POTS, some type of slight connective tissue disorder, MCAS, and almost had a hysterectomy, but backed out at the last minute. My hormones definitely have an impact somehow. I seem to have autoimmune issues, too. Hmmmm.....Kate Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 26, 2011 Author Report Share Posted October 26, 2011 Yep, i think we have overactive sympathetic nervous systems. Too much stress, a virus, a surgery, a pregnancy and boom, sympathetic overdrive. All of the troops are called in at the ready in case theres an invasion. What's that, gluten? Bomb it! A bit of pollen, nuc it! No wonder mcad issues pop up out of nowhere. I think the secret is in calming the symp nervous system. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 26, 2011 Report Share Posted October 26, 2011 That is why the idea of hypermethylation of the NET gene promoter was also interesting. Virus's can trigger abnormal epigenetic gene silencing. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 26, 2011 Author Report Share Posted October 26, 2011 Ive heard of this gene silencing business but dont know much about it yet. Am lusting over some medical text books but boy are they expensive. Im beginning to think i should have payed attention in biochem and physiol. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 26, 2011 Report Share Posted October 26, 2011 ive spent a lot of time researching POTS. its interesting, contradictory and at times pretty frustrating. I could list about five major studies that have other results that directly contradict the findings... Sometimes your better off just trying to work out what works for you. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 27, 2011 Author Report Share Posted October 27, 2011 For me, the frustrating thing about articles is that they are word limited by the publishers. In some journals, the authors are forced to be ultra economical and sometimes key pieces of info are left out. Also, performance of academics these days (at least in oz) is measured increasingly by the volume of papers published and on average, this has lead to a reduction in quality.Ramakentish, on another topic, i just saw a very good haematologist yesterday. I explained about NO and angiotensin and he asked me what tests i wanted done.After taking florinef for a week and not having to drink every five mins i think that one of the blood volume or pressure regulatory systems has gone awry. Have you got any suggestions for what tests he should run because i have no idea? He is onto the mast cell testing as he has a special interest in that area. In the end 8 tubes of blood were taken but im going to have to ring up to find out which tests these corresponded to because at the time i was too ill to care. Any blood testing info you could give me would be much appreciated. I would usually find out these things myself but with 2 small kids im struggling. Quote Link to comment Share on other sites More sharing options...
issie Posted October 27, 2011 Report Share Posted October 27, 2011 At Mayo there is a breath test for NO. But, I don't put much faith into it. When I did it a few years ago - I couldn't do it right and had to keep repeating it over and over and I think by that time I probably got a false negative test. I don't know of any other test for NO. Rama, have you read anything? I also don't know of a way to test the NET. They can test your NE levels but to test the transporter part of it - not sure about that one.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 27, 2011 Report Share Posted October 27, 2011 In relation to blood tests I would be asking for angiotensin II levels and possibly assymetric dimethylarginine. You cant test for NO by blood test as its a small molecule with a tiny half-life. And NET transporter expression currently can only be tested by actual biospy - in that they cut out some vein and look at the sympathetic nerves.Your not in Melbourne by any chance? Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted October 27, 2011 Report Share Posted October 27, 2011 My POTS started a few months after my hysterectomy. I am not able to take pain killers so it was all quite horrible. I have also had CFS/ME for 20 years so I was primed for it. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 28, 2011 Author Report Share Posted October 28, 2011 Ramakentish. Thanks so much for that info. No im not in Melbourne sadly. Im in Brisvegas. Have been thinking about flying to melbourne or sydney to see someone who has a high dys patient load and to get tilt tested. We have tilt testing here but they dont do blood work. Am seeing Terrence Frost here for haematology and he so far seems very good. How long did you go before you gave up on seeing specialists? I'm almost looking forward to the time when ive knocked on every door. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 28, 2011 Author Report Share Posted October 28, 2011 Sally, sorry to hear that your hyst caused your dysautonomia. How are you doing now? Quote Link to comment Share on other sites More sharing options...
issie Posted October 28, 2011 Report Share Posted October 28, 2011 Issie - have you found anything that helped? I am on mast cell stabilisers and they have helped a little but not much. I find drugs to be pretty intolerable. Have you found anything non-drug helpful? I want to turn off my nerves!I've tried so many of the usual RX's that are prescribed for POTS and HyperPOTS and haven't been sucessful with any of them. I'm using Claritin and Tagament and ocassional NasalCrom and if there is a rash the NasalCrom cream. I also use Tramadol and Bentyl for the pain associated with EDS. Since our muscles are in a constant constricted state just to hold us together (due to the collagen defect) - in order to sleep I have to have a muscle relaxr and the Tramadol to block nerve signals or I can't sleep. I think not sleeping is worse than having to use these things. Since I'm a naturalist and prefer alternative things to traditional western meds - it was hard for me to come to this conclusion. I do believe that olive leaf which helps increase NO and helps the NET function is helpful and right now I'm experimenting with l-arginine. It works like nitroglycerin and increases NO levels - but it also will give you miagraines if you take too much. I tend to have those anyway and it's not at all fun. I'm interested in trying the stinging nettle tea that Rama told me about. It's supposed to also increase NO levels and help with pain. Have to get some to try that.I think one of the key things is Vitamin C. Not only will it help connective tissue, but it will also help overactive histamine release. This could be a key player in our issues. It seems that most of us are low in Vit D and I use that also. I use quite a few natural supplements, but these are the main ones. I'm also using Grapeseed Extract and that helps with blood flow and to carry oxygen. Of course there is also enzymes and probiotics - since malabsorption can be an issue and if our gut ecology is messed up - our bodies will be messed up to. It doesn't matter what meds or supplements we take - if we don't break them down and absorb them correctly - it's a waste of money and energy.Remember, everyone is different and what will work for one - WILL NOT work for another. It's a trial and error thing - more error results than positives. But, when you're desperate for just a little glimmer of help - we'll try ALMOST anything.You need to determine if you need more or less NO. Different forms of POTS and different treatments. Some, especially those with CFS and low OI issues need less NO. Us with hyperPOTS and high bp's may need more NO. At least we and doctors are figuring out there are different ways of treating this illlness.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted October 28, 2011 Report Share Posted October 28, 2011 For all of us with hysterectomy's - any others with endometrosis and massive adhesions? They are connecting endo to mast cell issues too.Issie Quote Link to comment Share on other sites More sharing options...
Annaliese Posted October 29, 2011 Author Report Share Posted October 29, 2011 Are fibroids related too? Quote Link to comment Share on other sites More sharing options...
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