1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

What is your current regime?

Discussion in 'Lifestyle Management' started by xchocoholic, Mar 11, 2014.

  1. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,072
    Clear Light
    i missed ur question, sorry :)

    i just initiatlly threw in 'safe' bath yoga cos i didnt want to be responsible for anyone injuring themselves...

    but i was turning it into a ritual with awareness. i blessed the water. but it originated because i would insist i get into the bath when it was too hot for me lol

    then gentle posture stretches - have the added advantages of being able to rest limbs all over the place too... but i dont recommend anyone try it.

    i have had to stop baths over the years due to them just wiping me out. again its one of those changeable factors...

    i didnt get my further elybra treatment like i was supposed to.... instead i got a week and a half in bed from a really bad 'time of the month'. :( not my plan.

    'female essence' by jan de vries really took the edge off though...

    i am starting to build up again after my period trauma which knocked me for six.... but then got doused by pesticide from the farmer (i live in the centre of farmers fields).. and got even more pain and gland swelling. and that terrible roof itching in my mouth came back...

    my friend has been yelling at me all day and he is totally posessedr by full moon madness :(


    i think when i start to get on my feet again - the dynamics change ....

    feels a bit of a mess. but it will all sort itself out for the best :)

    current regime: don't know.
     
    xchocoholic likes this.
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,867
    Likes:
    1,532
    Florida
    oh ok. I get the safe yoga bath now. I was trying to envision this is a regular bathtub. lol.

    Hope you recover from the pesticide assault.

    I just returned from about 3 weeks in California. Everytime I go there I fantasize about moving there. Between the beautiful scenary and healthy food options it would be ideal for me.

    I crashed during my stay of course but I survived. My biggest crash symptoms are cognitive because my brain just doesn't work sometimes so I haven't found any solutions.

    I didn't sleep well when I was there so I slept 12 hours Wed and Thursday night. Something I obviously needed since I didn't use any extra sleep aids. I'm just waiting to get my brain back now. :)

    tc ... x

    ps. no change in regime other than exercising / walking more. I appear to be ok with gluten cc and additional carbs now. YAY! Trying not to get carried away but ...
     
    golden likes this.
  3. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,072
    Clear Light
    xchocoholic -

    wow, california :) there are loads of places in the US i think would be magical to live in. can you not move there?

    i havent had a holiday in over 15 years lol :) i think last year a brief spell camping in my back garden was the best to be had.

    glad you getting rest. (and able to wslk more) my cognition is what bothers me the most. i havent found a solution for this either - palpation my toes - particularly the big toes with small thumb techniques to get all the crunchies out helps me a little - the tops of the toes correlates to the brain.

    what is gluten cc? its good to know its possible to recover from gluten probs. gluten has been a big problem for me - the NHS never bothered testing for coeliac and unfortunately even though the doctor criticised me in my notes for spotting i had a problem with wheat - i myself didnt spot gluten. pleased though finally to know.

    my bath tub is just a basic one - sorry to have not explained that well - i cant think.of the names but i do touching toes, can do shoulder stand when i havent filled it too deep and extend my legs back...

    kneeling pose extending my back backwards...
    lying on stomach possibly called cobra pose - cant hold positions but am building core strength and am improving slowly. its 'poor mans hot yoga' lol

    starting to get real windows of definite improvement. i but still fluctuating.
     
    xchocoholic likes this.
  4. Thinktank

    Thinktank Senior Member

    Messages:
    398
    Likes:
    206
    Europe + South East Asia
    Regimen, i have chronic lyme disease, IBD, asthma, etc.
    12 weeks IV ceftriaxone and IV azithromycin just completed so am now using:
    - 200mg doxycycline
    - 500mg clarithomycin
    - 25ng GcMAF subcutane injection once weekly
    - 2CC 4ME (nexavir) subcutane injection daily
    - 10mg hydroxyb12 intramusculair injection twice weekly
    - 1000mcg methylfolate on B12 IM injection days
    - Vitamin C (from sago palm)
    - Creon digestive enzymes with every large meal
    - VSL #3 probiotics, 450billion count, 1 sachet in the evening
    - Histame before high histamine-foods
    - DGL (when needed but had no discomfort in thepast 2 months)
    - Mangosteen extract (stabilize mast cells)
    - Potassium (when needed)
    - Omega 3 DHA/EPA
    - Primrose evening oil
    - SEAcure
    - Lactoferrin 250mg
    - Colostrum (with high IgG count)
    - Glucaplex
    - Creatine monohydrate pre-workout
    - Beef protein post-workout
    - Beef BCAA pre and intra-workout
    - Electrolyte mix intra and post-workout
    - Diazepam 4mg :( (but tapering-off)

    Trialing:
    - Resistant starch
    - Prescript-assist probiotic
    - Vitamin E tocotrienols
    - Curcumin
    - lypo-spheric vitamin C
    - NAC (not sure if i should use it but it helps in a big way with detox)
    - Quercetin

    Trying out soon if my LLMD agrees with it:
    - B-complex (swanson's)
    - N-butyrate
    - High quality reservatrol
    - Various probiotics which i lack based on PCR DNA stool test
    - Pinella
    - Ashwaganda
    - Adrenal cortex
    - lypo-spheric glutathione or IV glutathione
    - stinging nettle leaf

    - Mild hyperbaric oxygen treatment
    - Infrared sauna


    Ofcourse diet, paleo-"ish" but with safe starches in moderate amounts. Gluten-free, dairy free,avoiding IgG and IgE foods i'm intolerant to, low histamine and avoiding mast cell triggering food.

    I'm able again to exercise since starting the core regimen prescribed by my LLMD to treat my hronic lyme disease!
    I've always noticed that my symptoms improve after a few weeks of high intensity cardio and HIIT weight lifting so i'm doing that as well, slowly building up.

    Ofcourse i've added a few of supplements myself and keep trialing others.
     
    maryb, xchocoholic and abporter like this.
  5. abporter

    abporter

    Messages:
    43
    Likes:
    9
    Austin, TX
    I have chronic Lyme. Can you tell me what HllT weight lifting is? I've just been able to start lifting weights after 8 weeks of 100ng/wk of GcMAF. I've been trying to keep my heart rate under my anaerobic threshold of 110 and doing higher reps of lower weights. Yesterday, I also just started 2cc/day of Nexavir and have been very sleepy since then. I will start 10mg of HydroxoB12 soon, twice per week. As well as IV antibiotics, azithromycin and rocephin.
     
    xchocoholic likes this.
  6. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,072
    Clear Light
    I am day 2 of 'mostly raw vegan'. My body was crying out for it. Could be triggered by the hot weather.

    had a detox - took Homeopathic Arnica 30c. Mantra for a couple of hours was: Oh God, help me...Oh God, help me... lol my dogs and cats were laughing at me :)

    A few days ago I took Ledum 30c. (edit 200c) took this successfully last year after i stood on a rusty nail, to prevent tetanus. I got t a good calm from it again.

    I am scared of the 1M remedies - but it turns out tp be a lyme remedy too since lyme testing is unreliable - and i am getting positive result from arnica n ledum (from the same groups apparently)

    i am going to try and gain the courage to try Ledum 1 M and the nosode... will ask a homeopathic doctor for some reassurances first i think. :)

    http://www.thepenzancehorse.com/2007/BITSNPIECES/lyme&ledum.htm
     
    Last edited: Apr 19, 2014
    xchocoholic likes this.
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,867
    Likes:
    1,532
    Florida
    "Oh God, help me" .... lol. Hopefully you won't need that mantra again.

    My brain is still fried so that's as far as I got. I'm in post vacation re-stock everything mode tho.

    I'm not up on Lyme treatments. Good to hear success stories tho.

    All my attempts to recover strength have been halted due to increased cognitive impairment. I begin using the wrong words, slurring my words and have trouble speaking constantly. My brain was the first to go when I got cfs and works best if I rest a lot.

    tc .. x
     
    golden likes this.
  8. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,867
    Likes:
    1,532
    Florida
    I ate gluten yesterday and lived to talk about it. ;)

    I bought some cookies I thought were gf.
    The first bite tasted soooo good that I was thinking "uh oh. This must have butter in it. "

    The second bite was even better. Then it hit me. Why am I not tasting rice flour?

    At that point I pulled my car over so I could read the ingredients. :0 Yikes.

    So I panicked for a few seconds. Took 2 Enzymedica spectrum and 2 Glutenease.

    Pulled out my emergency Klonopin just in case.

    Sat my phone close just in case.

    Then drove to my destination. Upon arrival, I raced to the bathroom. Just in case you know what happened.

    And nothing ever happened. LOL.

    Granted I only ate 2 bites but that's more gluten than I've eaten in 8 years.

    The moral of the story ... Don't freak out over what might happen.

    Have a great day ! X
     
    taniaaust1, golden and maryb like this.
  9. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,072
    Clear Light
    Oh no! A 'Keep calm and Panic' moment.

    So glad it was OK.

    x
     
    xchocoholic likes this.
  10. horcrux

    horcrux

    Messages:
    21
    Likes:
    17
    My gosh! Just reading that makes me need to lie down for a while...not that I wasn't lying down already! =P

    Thank you for sharing this. I can't offer any insight as I'm pretty new to this -2.5 years and going steady! Lol
     
    taniaaust1 and xchocoholic like this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    Since March when I posted my full list of meds and supplements, I have some additions to the prescriptions above, it took me ages to get to see my Allergist over a very severe allergic reaction I had late last year and he's put me on more meds due to it. So I now have the following two things on in my meds to take if needed

    - Epi-pen
    - Phenergan

    As I still havent got my sugar issues sorted out as I havent been able to get back to doctors, I havent been put onto the medication for that yet. (my condition is still in a continued decline since I last post, now my kidney are at risk cause I keep dehydrating due to the POTS etc).

    Does everyone feel like they will be taking 30 or more prescription drugs before they are 40? Its crazy, I need more every year.

    I havent needed yet to take either of these new drugs and hopefully I wont (I still thou do not know what caused the bad allergic reaction which swelled my lip and inside my mouth and started affecting my throat). Im worried as apparently the Epi-pen has adrenaline in it and I react severely to adrenaline. Being given a dental drug which which had adrenaline in it too, once had me so bad that an ambulance should of been called (it messed with my neurological system).

    My allergis thou has reassured me that the Epi-pen gives less adrenaline then the Lidocaine I got the severe reaction to re the adrenaline. (I hope he isnt lying to, if he had seen my reaction to the other, he'd understand why its got me so concerned).
     
    Last edited: Aug 3, 2014
    xchocoholic likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,310
    Likes:
    4,661
    australia (brisbane)
    @taniaaust1 the other morning i counted how many pills i was taking, it was 20, mostly supplements, 2 mouthfulls with a drink and they are gone, we get better at swallowing alot of pills at once or we would be there all day. Sometimes i look at it and think this is rediculous and then i start looking at what i can eliminate but i cant reduce the number as they all help in some way. Most, i have used over the years of trial and error. Lucky we can get supps overseas alot cheaper then locally because i wouldnt be able to afford this here.

    I think it would be a nightmare if i went to hospital and tried to explain to them what i was taking. I dont think i would, only the meds. I suppose just keep doing what helps until we cant take them for whatever reason??
     
    taniaaust1 likes this.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,310
    Likes:
    4,661
    australia (brisbane)
    My Morning schedule

    Old man section
    tramadol 200mg sr for my dam dodgy back

    Antiviral/immune section
    Famvir 250mg am/pm for ebv/cmv
    cycloferon inj mon/thurs for about a month or so then alternate with-
    arbidol/arbivir 200mg mon to fri for about 6 weeks, arbidol as well as cyclo are interferon inducers which have antiviral properties and this also help increase nk function. I believe its helped neutrophils too.

    Hormone replacement section
    pregnenolone cream 50mg, yah not a pill
    dhea 25mg am/pm
    metformin am/pm

    The mito section
    ribose 3000mg am/pm
    creatine 2400mg am/pm
    q10 400mg
    acetyl carnitine 1000mg

    Whats left antioxidant section
    5htp 100mg
    vit e (mixed tocerophils) 400iu am/pm
    vit c 1000mg am/pm
    lipoic acid 300mg am/pm
    NAC 600mg am/pm
    fishoil 2000mg

    My pm schedule is whats noted above.

    My sleep schedule is complicated i guess
    OKG 1500-2000mg, helps lower ammonia which is a neurotoxin and worsen sleep etc
    yucca 500mg, herb to lower ammonia, use it 3 days in a row and have a day or 2 off, for some reason it stops after 3 days.
    phosphatidyleserine 500mg, help lower high night time cortisol, will use it a few days in a row then take a break for a few days.
    Lyrica 150mg mostly for neuropathy i get in my legs at night, does improve sleep some
    Alternate each night some type of benzo mostly imovane or/stilnox or/valium
    Alternate antihistamine for sleep maintenance, diphenhydramine 75mg or doxylamine 25mg
    All about alternating things for sleep meds to avoid tolerance but sometimes sleep is just crap for no reason, maybe viral crap going on

    Energy Section
    ALso taken on an as needs basis when i need to function eg making to the end of the working week. not all at once other then tyrosine
    acetyl tyrosine 700mg
    dopa macuna 1-2tabs
    HC 5-10mg
    modalert 12.5-25mg, such a small dose that it doesnt effect my sleep but helps cognitive energy/endurance, im not interested or after being hyped up out of my brain, just all those neurons (all 3) firing.

    Thats my current nuts and bolts, through trial and error that keeps me functioning and able to work. I dont have that sick feeling anymore, more just abit of lethargy, feels like a lack of motivation. Im sleeping better then a few years ago but i think its just the general improvement in my ME thats helped. I would like to have another crack at sleeping drug free now that im doing the ammonia thing. But will wait till im off work. At the moment i just dont think i would sleep around my work schedule, where if im off work for a few weeks then i can let my sleep patterns do anything.

    I have used in the past but trying again the ribose and creatine. OKG and Yucca are also quite new.

    Maybe i could develop 4 big pills, the AM, PM, sleep and energy pill, need to be a 4 inch diameter.
     
    taniaaust1, xchocoholic and maryb like this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    I wish that was the case for me, if anything Ive got a lot worst with taking pills. Its like my mind is rebelling against them and going AUGH!!! when I look at one nowdays (If I dont be careful I'll start to gag at a pill). Id tried to swallow 2 at once (except the wee ones), I honestly think I'd choke on them.

    So my pill taking can be a horrid 5min taking process of me trying to force myself to swallow them.
     
  15. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,867
    Likes:
    1,532
    Florida
    Hi @taniaaust1

    I can't take more than 1 at a time or they get stuck.

    About 10 years ago, I was taken off approximately 10 meds at once when I was in the hospital for heart eval. It was a mistake that landed me back in the hospital but I learned something. The doc pointed out that I was taking drugs to counter act other drug reactions so I was chasing my tail.

    I was just mindlessly following my regular doctors orders and taking drugs they THOUGHT might help my cfs.

    Since then I stick to those I can't do without. Klonopin.

    I have no idea if you're doing this too but wanted to throw it out there. Some docs are into handing out drugs without considering the side effects. Big Pharma loves these doctors.

    Tc .. x
     
    golden likes this.
  16. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,072
    Clear Light
    Health took a nose dive - had been doing really well. I think its from adding in Olive Leaf Extract. Since 9 ish days. But am recovering.

    I dont know whether to continue with it or not. I stopped it and am improving again.

    I wish i wouldnt mess around with things when i start feeling better! But i did have a week from hell where a lot went wrong - a period which drained me (but not much pain on low fat - this is a great find.

    I also started eating full cooked meals two days ago - i got my bowel inflammatiin back and sharp burning in eyes. I think the burning in eyes has come back to not having much vitamin c. Useful discovery.
     
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    No Im not doing that at all, I'd stop taking any drug which caused side effects in which another drug then was needed (that doesnt sound like its solving much).

    I also do not take anything just cause its a ME/CFS treatment on the assumption it "may" help my CFS. I only allowed a couple of doctors to talk me into doing that and it didnt help at all, as I say to doctors, you cant throw us all into the same basket and treatment plans need to be carefully tailored.

    Everything I take has very specific reasons why I take eg deficiency etc or it does really help my symptoms a bit.
     
    xchocoholic likes this.
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    I find that when Im not getting enough vit C my skin goes very fragile and I start to get skin sores for no real reason. Actually I must be low on it currently as I woke up with a bleeding ankle and I have 3 sores on my breast
     
    golden likes this.
  19. zzz

    zzz Senior Member

    Messages:
    238
    Likes:
    603
    Oregon
    Reading about your pesticide dousing set off alarm bells for me. Some people get MCS after just one strong exposure to pesticides. Although the actual dousing is over, there are still going to be some pesticides in the air and where you walk. And there may be more dousings in the future. (Over time, there certainly will be.) Even healthy people should not live in such an environment. If you're going to make a permanent improvement (or even avoid going downhill), you may have to move.
     
    Last edited: Aug 7, 2014
    golden likes this.
  20. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,072
    Clear Light
    I have always easily got the RDA of Vit. C - but with all the fruit and veggie fruit i have been consuming on the raw diet (Meals om Trees :) ) - I was getting loads of natural vit. C.

    Watermelon, the juice feels like elixir... (but my digestion cant handle many of tge seeds)

    Mangoes...properly ripe....heaven. You should see me with Mangoes. Have you seen the magical seed in them too! Quite a suprise. I was expecting an Avacado type seed.


    The water from these fruits feels exceptionally good and balancing. I had these today. Pain in eyes almost gone.

    Yes, you need your Vitamin C @T1... y' know :(
     
    Last edited: Aug 7, 2014

See more popular forum discussions.

Share This Page