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Serbo

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Posts posted by Serbo


  1. Hi everyone.

    This is a new symptom for me, small patches of hairloss in beard (i am a guy :) ). Not the end of the world by any means, as I can just go clean shaven and it's OK, but i prefer some stubble.

    Will go see the GP soon, but It seems best approach is to leave it initially and see what happens. I have the MCAD/POTS/EDS trio but not sure where this fits in.

    Quite frustrated as had tons of autoimmune bloods a few weeks ago, and out of 20 or so tests all came back normal apart from a couple which were top end of normal range so not sure what to make of this.

    Any one else had experience of this stuff on the face?

    Aaron


  2. ^ nice post. i was similar to you, lifted for vanity 6 days a week from 16 to 24 and had a bit of dizziness and pain but no problems really. In good shape. Had a surgery, deconditioning etc and POTS kicked off for me. Through numerous flares pushed myself to try and exercise my way out of them, and sometimes just felt worse. Don't write off getting back in shape though if you can, it might not be enough alone to help you feel better but it's part of the picture.

    i was doing well until i picked up a groin injury a couple of months ago, as i got in worse shape resting a lot stuff went down hill. Exercise is a big part of it, but stuff like hypoglycaemia is also related. The more deconditioned you are the worse your bodies insulin response will be. it's a complicated weave of factors that all interrelate, but if you can try stay in shape you'll be doing a lot for yourself. Seems gradual reconditioning is the way forward.


  3. your posts are so knowledgeable on all things diet related! :) Given me lots to go away and research. funny that a food as specific as bacon can cause pain.i found that bacon can cause MCAD reaction, but i think its the preservatives perhaps more than the meat. I also have reactions to soy so like you don't do soy, dairy or gluten. My vegan mates are impressed with the strictness of my diet, but no so much when i tell them its not through choice!


  4. I think now I have gotten to the point where I realize I am probably stuck with this for the rest of my life and that somehow I am just going to have to cope (I owe it to my son) :( my specialists have gone from telling me 1-2 yrs for improvement to benign chronic long term illness and the list of secondary issues keep getting longer. I guess I can handle having to live with this new life but what my personality doesnt allow is the not knowing why? I have to know the cause...its how my brain works.....I am a huge believer in cause and effect. I just wish more dr's cared about the why.......if their lives were drastically altered over a couple of years for no reason and to the point that they couldnt hold a job, friends or anything the slight bit fun or stressful, I bet they would want answers ;(.....sorry to ramble...bad day lol!

    Bren

    reading your sig i think i have many of the same probs as you , POTS, MCAD, neuropathy and EDS (awaiting testing).

    I have a similar personality i think in wanting to know root cause. Have been tested for lyme and pushing for autoimmune tests but if they come up short not sure where else to look. i had a surgery which caused POTS for me, but the EDS underpins it.

    have had this for about 2 years, TBH don't come on Dinet unless i'm going through a bit of a flare or having a bad week. reading everyone's posts just made me write a list of things i can affect and can't. i find this helps me cope, i write each problem down and ask myself am i doing everything i can in my power to have an affect on that problem and set an action if i need to. e.g.

    Neuopathy - Sugars/carbs make it worse, action - reduce sugars/carbs

    EDS - make a physio appt' ASAP

    POTS - tilt head of bed further, increase exercise, stand more, focus on sleep, hydration

    etc...

    Once i'm satisfied I'm doing everything i can at that moment in time i try and accept it. Very very hard but you can only be stoic about it. What gets me down is being in a flare and wondering if/when improvements will come.

    The one thing that has helped the most over the whole time i have had POTS is mindfulness/meditation. Was very dizzy @ work today, and then sat to meditate on lunch and it just seems to get rid of the dizziness and focus the mind. So useful.

    I saw my POTS doc here in the UK a few weeks ago, his centres focus is on an immune problem being behind the symptoms of POTS. He will be working with a Neuroimmunologist soon on new research. His policy is to treat the symptoms of POTS and at this stage and not to over analyse causes of symptom's as they are related anyway. Not easy, but the science just doesn't seem to be there yet so have to trust the doc and for now try and treat the output.

    stay strong everyone!


  5. I've actually been on the wahls diet (basically it's tons of fruits and veggies) since jan. It's going really well.

    I reduced my meat from 3/4 lb per day to 1/4 lb and feel a lot better eating less meat. The fruit is helping

    me energywise too. I just can't pig out on fruit.

    I also tested low on elastase too tho, via metametrix, and taking creon is helping me now too. Kow ..

    If you don't mind me asking, why is your diet so limitted ? We need variety.

    Granted it's not always easy but going to a health food store that carries a large variety of produce helps.

    Oh and Dr terry wahls has some great info / videos on diet and leaky gut.

    Tc .. X

    Ps. I don't know if it was the wahls diet or the treatment for h pylori and parasites I did in dec

    but I haven't had orthostatic hypotension (bp drop) since feb. Kow. I still have pots tho so I didn't gain any functionality. There is an article on pheonix rising about a chemical, (isopr?? - comes from veggies), that's supposed to help with blood volume.

    Thats really interesting, thank you for reply. i shall have a look @ whal's diet.

    My diet is limited because of MCAD, i react to most foods. All grains for example, and also unfortunately most anti histamines.

    I take it you don't have any hypoglycaemia issues and therefore you can eat fruit no problem?


  6. I don't experience facial flushing so I'm not familiar with it.

    But since you mentioned that the gf diet helped yiu and now after eating more sugar which

    I assume means more gf goodies, I'd look for gluten cross contamination. Everyone responds a

    little different to gluten cc. Some respond immediately and for others it takes repeated exposure.

    The metamatrix stool test can show you if you have leaky gut. Fwiw, I like the way Dr Fasano

    explains leaky gut.

    Bad Gut bacteria, parasites, etc can make anyone sick. My exposure to h pylori made it hard

    for me to stand up at all. Tc .. D

    Thanks Dizzy. will look for Dr F explanation.

    How are you getting on on paleo? Been trying to do 6 small meals per day at the moment, each meal the same chicken, sweet potato and a type of green veg. Have beeb eating this or variations of this for years anyway but starting to feel guilty about eating so much meat.


  7. Aaron, I do believe our gut bacteria contribute to symptoms, whether they are POTS-related or not. I've had a 12 year history of bloating, etc., and have never found a good doctor who can fix it. I have a looong post on this from 2010 if you look back under "gut bacteria...", with alot of references to medical papers of the effects of gut bacteria.

    Thanks Sue, will try and find your post. i'm sure in the past i have had bacterial problems with abdo pain and everything that goes with that. being on a PPI i understand this can make one more prone to infection.

    I wonder wether this leaky gut issue is a chronic problem in ESSers, something that waxes and wains and adds to brain for etc..


  8. I'm not a fan of the term "leaky gut" as it rather non specific, but it seems that there is a core of people online who link EDS and leaky gut.

    I've been gluten free for about a year now. It's really helped. Very rare that i get abdo pain, digestive system seems to tick along OK with the help of a PPI and a very limited diet (due to MCAD).

    However over the last week or so have had a bit of a POTs flare up of sorts. Less able to exercise, constant brain fog, lots of burping, tingling numbness worse than normal and a flushed face.

    I haven't been sleeping well lately, skipping meals, not being conscious of hypoglycemia ( OD-ing on sugars!) and due to injury have become decondtioned.

    I've had these kind of flare up's and they seem to go over a few weeks, but i'd love to know if others get flare ups of this nature and can pin point them to anything specific? My best guess is it's due to lack of exercise and letting reactive hypo get a bit out of control, but can GI bacterial over growths or infections cause these transient flares, and very specific problems like a flushed face?

    Any thoughts appreciated. :)

    Aaron


  9. I actually wasn't thinking of rowing, but there are many other exercises that you can do supine that will get your HR up, but no stress your groin injury. You could get a set of pedals (like the physical therapists have) and pedal/cycle from a seated position, Pilates, arm exercises, etc.

    The article actually seemed to state that fluid was as important as exercise in maintaining conditioning. You may have to see a physical therapist anyway, so why wait?

    Good Luck!

    Thanks FW, think i will do some isolated arm stuff. i have the seated pedals, but you'd be suprised how much one uses the groin to cycle even when reclined. Seems the core is so involved with everything, we just take it for granted when it works!


  10. I have a hernia too and was advized to move and walk as much as I could. Sitting was a nono which was pretty difficult as at the time that was about the only thing I could do. I was on bedrest for it for 10 days but after a week I was in so much pain that I really couldn't stand it anymore so I got out of bed and tried to work with the Wii which helped me get rid of it. Of course I don't have EDS so maybe it isn't for you but lots of walking and moving around is very helpful too according to my doc.

    Hope you can get rid of it soon as it isn't fun at all!

    thanks for your reply. Yes, i have had 2 hernia and advise was the same. Move! This time it's multiple groin strains/injuries not hernia so the advice is different, rest to allow inflamtion to go down and body to heal


  11. Thank you Issie and Dizzy, some good ideas! Dizzy - Glad your about to hit the ankle weights again.

    Doc doesent think i have a hernia, but hopefully ultrsound next week will rule it out. Doc said some walking ok, but no "forced walking"

    thinking that i may just try and go from sitting to standing as often as i can and try and use the time to build up OI tolerance over the time i'm out.


  12. Hi all,

    I have manged to give myself some serious groin injury (ultrasound to rule out a 3rd hrenia later this week, *** EDS!), so doctors orders are 3 weeks of rest, minimal walking, carrying nothing hevier than a shopping bag and a course of anti inflamitory meds if i can tolerate them.

    I'm normally quite active, walk every day for @ least an hour and light weights every other day which has really helped my POTS. Really worried that 3 weeks stationary is going to move me back to square one.

    Any advice on what I can do to stave off deconditioning until i heal up? I'm open to any andvice e.g dietary, anything at all.

    Thanks in advance!

    Aaron


  13. Hi - I just had some quick Q's for those on midro, i'd be really grateful for any responses. Thanks!

    - At what point did your Dr prescribe Midro? e.g had you tried florinef already and moved on to Midro

    - How severe were your symptoms when starting, and how much did it help you?

    - Were you warned about any impact on your long term health because of the supine hypertension it can create?

    Thanks in advance for any responses. I ask because here in the UK it's an off label drug. I had a mast cell response to florinef so suspect midrodrine would be next line in treatment. I am lucky in that at the moment i dont faint (do get very dizzy though), and just wondering how effective midro can be vs. any problems that may arise from supinehyper

    Cheers

    Aaron


  14. Just wondering has anyone pushed themselves gradually over a period of time, doing more and more standing and seen any improvement in OI?

    Walking exercise/gradually and steadily has helped me tons, but I have to take it slow and build bit by bit and most importantly keep it regular. Just wondering if controlled standing would have the same effect. E.G standing for 30 mins initially or whatever and adding 5 mins day by day.

    I work from home or in the office with my legs raised, as having them unsupported would result in dizziness very quickly, but I'm wondering about working standing instead. I can stand for longer than sitting without getting dizzy! I don't want my body to get used to having legs supported, i know it's important to keep challenging it.


  15. Hi - was doing a such for "neuropathy, burning face" and came across this thread.

    I have MCAD and like julie says 1st sign of a reaction for me is numb face/forehead or bit between my eyebrows. even just getting stressed and M Cells degranulating causes this and then eventually flushing, and it can last for days.

    Recently i have been getting a flushing in my cheeks (on 1 side more than other), and my skin feels like it's sub burnt. also have been having a nightmare with hypo last few weeks. suspect this is neuropathy related, can anyone else relate?


  16. tilted gradually over about 6 months, up to 6 inches now. My pots has improved but there's tons of variables at play so can't pinpoint it on raising.

    I had to do it gradually, each time i increase the tilt i keep waking up suddenly in the night, suspect the lack of blood to head causes and adrenalin rush. The body seems to adjust after a couple of weeks. Always feel worse at 1st when increasing the tilt, but the body seems to get used to it.

    Deffo better in the morning now, if i suddenly jump out of bed to answer the front door still slight tachy but no where near as bad as it used to be

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