Annaliese

Two of my Australian friends with dysautonomia have finally, after many many years, discovered they have Lyme disease (through blood testing). Was it a doctor who suggested they have the testing? No! They were the ones who pushed for it. I have been told by a specialist that "it does not matter why you have POTS". What utter rubbish! Im currently trying to arrange for Lyme testing for myself. I just thought I'd post this to remind people who are outside the states that Lyme is pretty much all around the world, not just the USA. I have seen 15 specialists and not one has suggested Lyme testing! Thank you to the makers of this website btw. It is fantastic to have a list of potential causes of dysautonomia.

Thanks Corina : )

Ok, had the colonoscopy and was ok. Yay. Was admitted first and put on fluids. If it wasnt for the fluids i think i would have passed out. Thanks to everyone for replying to my post.

My personal opinion is that autoimmune disease is responsible for most of us on here being ill. Just look at the comorbid AI diseases listed on people's profiles. It is well known that if you have one AI disease then you are more likely than the average person to have another.

Nope. That stuff made me very sick.

Yep, helps my pain and im only on 2 mg at the moment. Therapeutic dose is usually 3.5 mg.

Yes it helps with pain levels. You can avoid the sleeping problems by starting at a low dose and tapering up. You need to be on the med a few months before you notice improvements as benefits seem to accumulate. First i noticed i was happier then i noticed my jaw wasnt as sore etc etc. Had the best day yesterday since i got ill. Naltrexone hasnt ever made me sleep better though.

Thanks corina and charmed! Starting to get less nervous now. I appreciate you guys responding.

Thanks Issie. Im stoked about it. It's the only med ive tried that doesnt have negative side effects ( apart from the first few weeks when it's hard to sleep).

Still on 2mg. Thought id got up to 3 mg in about 2 weeks. The best benefit, i reckon, is the antidepressant effect. For me, its much better than avanza and doesnt send my cholesterol high! I think my joints are less sore too now that i think about it.

I just thought i'd let everyone know im continuing to do well on low dose naltrexone. I LOVE this drug. I generally feel happier and more well. Not sure if my orthostatic tolerance has changed that much but my chest is less sore. Bowels are definitely MUCH better and i seem to achieve more every day.

Jan- your post cracked me up : ). Glad you guys went ok with sedation. I'm such a weirdo i'm betting SOMETHING happens. I chatted with the anaesthetist today but there was so much background noise i couldnt hear what he was saying. He heard ME though which is what counts i guess (ie he knows i need fluids and that im odd).

Im due to have a colonoscopy and am worried about the effect sedation will have on me. Im worried about it because when i had my c section, although i already had started getting dysautonomia in my last trimester, the anaesthetic caused a horrible reaction- Shaking, sweating for 2 days. It basically triggered my dysautonomia to become much worse. About 12 hours after surgery, i also noticed pain in my chest which turned out to be costochondritis. It's taken two years to get marginally better so im very scared of becoming worse again. I know sedation is different to anaesthetic but despite this i need reassurance. Is there anyone out there who has had a reaction to anaesthetic but been ok under sedation? The japanese have colonoscopies without any sedation so that's an option but im obviously not keen.

http://onlinelibrary.wiley.com/doi/10.1111/j.1751-7176.2011.00509.x/full

Yeah, im lucky because my dr is into research. Its a tricky business measuring and interpreting hormone levels. It took me ages to find a dr willing to measure ang 2.

That's excellent jangle. Congrats. Just want to warn people to take it slow though. I suspect my dys is AI as it started suddenly. I started an exercise regime but did too much one day and woahhh, just like that i was 10 times worse. Has taken 18 months to get back where i was. I think the exercise was perceived by my body as a stress event and caused a retriggering of my AI issues. I restarted exercise-This time i began at 2 mins and then incremented every two weeks. I think exercise might not help some people's OI though- the yellow wiggle was super fit and still had pots. Nonetheless people like the yellow wiggle would still benefit from exercise in other ways- eg its as good as antidepressants (if not better) at making you happy : ) Thanks for your uplifting story jangle.

Yep, already got it on kindle but havent read it yet. Was just looking at what happens if you block ang II receptors. Looks like your body just makes more Ang II. Ha ha. Fits in with your theory about why not to take huge amounts of salt- your body will just make adaptation to it. http://www.nature.com/ajh/journal/v13/n2s/abs/ajh2000665a.html Ive been thinking about the low lying levels of all three hormones. Either ive got an endocrine AI disease or a AI neurological disorder. Just say i have a neurological disorder increasing sympathetic drive. That would increase vascular resistance and therefore my endocrine system would be behaving appropritely in decreasing blood volume because ive effectively got less vasculature to fill. So then when i stand, the blood rushes to my feet as it does in anormal person but my vasculature is already at max construction levels so this mechanism effectively doesnt work anymore. Hr goes up to compensate, blood volume increasing hormones are excreted because local low blood volume is detected. Or, ive got an endocrine AI disorder. One would think though that if i had this then id end up with strange ratios of renin/ aldosterone renin/ ang II, aldosterone ang II like in that stewart paper. Cant quite think of a sensible endocrine scenario...... You got any ideas?

Ha ha. How did that face get in the middle of that text!

Issie. I reread this and want to say a couple of things. First, i agree with you re major salt intake being a waste of time. I tried a high salt diet for a few months and two things happened- a) my OI didnt improve at all and my vertigo got worse. I stopped taking the salt because i had done some research on aldosterone and hearing issues and like you found that low aldosterone levels could contribute to hearing problems. I couldnt see anything on vertigo and low aldosterone though. I also have the same worries about florinef- taking too much and my kidneys not bothering to make aldosterone anymore. I am currently trying to get off florinef altogether. Recently i had my renin, aldosterone and ang II levels tested in hospital. I am getting them redone when off florinef. I dont know what to make of the results really. Renin, aldosterone and ang2 are all low when lying and all high when sitting. So in my case there doesnt seem to be any problem in making these substances. Also, i had a short synacthen test and that was normal. One thing id like to say about blood volume is that endurance elite athletes can have blood volumes 30% greater than the norm. 30%! That's amazing. I wonder whether people able to recumbentl exercise would be better off doing just that than chugging down the salt. Who knows. We are such a mixed group its so hard to work out what's going on. I for one am getting sick of reading medical material- i think ive understood something then i realise, nope, ive got no clue. For me, at the moment im sticking to recumbent exercise, naltrexone and the min amount of florinef i can tolerate without fainting. At least with exercise theres no negative associated with it (unless you do to much of course). I made the mistake of doing too much exercise once and it made me ten times worse - i assume this was an AI response to stress. Btw, have you seen anything on vertigo and aldosterone levels?

Eek, broken bones. Sounds nasty Issie. I dont eat dairy so maybe i should take some calcium. Re methylation, my holistic dr mentioned this to me and i looked it up a while ago but i went way over my head. Biochem isnt my thing. The one thing i noticed from that video was that 20-30% of people had the gene he was talking about yet surely 20-30% of people dont get chronically ill(ormaybe they do). The guy speaking said he had two genes mutations but that he was well- hmmm.

Just spent 90 mins watching that video link you posted. Very interesting. Not sure i understood most of it though! How did you find out you have/had osteopenia?

Thanks issie! I was just reading http://hyper.ahajournals.org/content/45/3/385.long again and it retriggered my interest in this. When i first started getting sick i got a lot of flushing so i was thinking mcad triggering hyperpots as my diagnosis. But maybe its urea cycle disorder triggering mcad triggering hyperpots! Still doing well on naltrexone btw.

Oh, just found out high ammonia levels can trigger mast cells!

Good to hear naltrexone is helping you. Was just looking at some papers on fibro and naltrexone therapy.

Thanks Rama