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What is your current regime?

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

  1. xchocoholic

    xchocoholic Senior Member

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    I just realized the other day that over the last 8 1/2 years I've come up with some strategies that appear to work for me.
    :) Finally :)

    Not that I've "cured" myself but my symptoms are mostly under control.
    I still have OI (oh and pots), pem and chronic hypoglycemia but that's nothing compared to the list I had from Jan 1990- early 2005. :) AND I don't need to frantically google medical terminolgy anymore. :)

    My life was changed for the better when apparently I developed full blown celiac disease in 2005. Eliminating food intolerances, esp gluten, helped tremendously. I'm a celiac with the DQ2 gene.

    These are coping tools including supplements, diet, meds and lifestyle changes. I'm curious about how many of these strategies, pwcs have in common.

    There's no right or wrong answer here. As individuals our paths have all been different based on individual health concerns, available medical care, personalities and finances.

    I'll start.

    Upon waking up in the morning, 20 minutes before getting out of bed, I take
    1 Himalaya liver care and 1-2 Dex4 dextrose tablets. Sometimes I fall back to sleep for 1-2 hours after taking these.

    After getting up, I take 2 DGL and prepare breakfast. Just prior to eating I take Enzymedica digestive enzymes.

    After eating, I take 50 mg zinc. And lay down to recover from POTS / hypoperfusion. This typically takes me an hour. Digestion adds to OI.

    For some reason laying down for an hour after breakfast makes my whole day better. I won't feel good all day if I don't do this.

    I need DGL and digestive enzymes for all meals and snacks and take those throughout the day.

    I need to lay down to completely resolve my hypoperfusion and OI but don't always get the chance. I'll be monitoring this next to see what my body's doing when I can't resolve my hypoperfusion via laying down.

    To keep me going during the day, I use 1 and sometimes 2, 16 oz bottles of Vitamin water xxx total but diluted by 50% with smart water 40% and a strong antioxidant juice with cranberry (for utis) 10%.

    I add calcium powder (binds to oxalates), lysine (herpes flares) and salt.

    Oh and recently started taking small amounts of a caffeine pill. These don't cause the jittery feeling that coffee or tea do. Never more than 1/3 of a pill daily. My doses are still being evaluated. Smaller amounts twice a day seem to work better than taking it all at once. But never past 2 pm if I want to sleep without resorting to extra melatonin, 5htp and klonopin.

    Bedtime regime includes, Natural Calm
    magnesium citrate (controls constipation), lysine and salt in warm water.

    Also, 5-10 mg 5htp, .1-.2? Mg melatonin, 1/4-1/2 tsp children's dye free benadryl and .125 mg klonopin (myoclonus).

    I was taking Enzymedica candidase and Virastop in the mornings if I woke up feeling like food was stuck in my digestive tract but since that's my norm, taking it every nite before going to bed worked better. Food is moving thru me like it should now. :)

    A paleo / low oxalate diet makes me feel best but due to OI, fatigue and chronic hypoglycemia isn't a reasonable option.
    I'm still 85-90% paleo tho with gfcfsfcf and chemical free breads or snacks.

    Still juicing mosly low oxalate fruits and veggies (no chard, spinach, kale or carrots) and removing stems to reduce oxalates.

    Due to chronic hypoglycemia, there are times when I have to have something sweet NOW. Right now. This second. Lol.
    DEX4 works well. Oj or coffee or tea with sugar work too. DEX4 is the most convenient.

    Whew. That pretty much sums up my current regime after 8 1/2 years of research and multiple protocals. I'm assuming some of the protocals I did helped my body heal even if I didn't see a direct correlation.

    Some things, mb12, adb12, p5p, b6, probiotics, fermented foods, etc, worked for awhile then started making me feel toxic or weak. I suspect chronic leaky gut means I develop intolerances to anything I ingest after awhile. Or I simply don't need these anymore. Or some supplement fillers are bad for me.

    Fyi - I'm a pwc with gluten intolerance / celiac disease / neurological complications, some organ damage (history of ataxia and white lesions on brain that resolved 1-2 years post gfcfsfcf + chemical free diet) and autoimmune diseases.

    The NIH states that celiacs are being misdiagnosed with cfs. I'm not sure they know about gluten sensitivity. And that many, most ?, celiacs have multiple non digestive related diagnosises.

    So, what have you come up with?

    Tx .. x
     
    Last edited: Mar 14, 2014
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  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So you only take 5 to 10 mg of 5 HTP? Perhaps my brain is off at the moment, but that seems like a really small amount, right?

    GG
     
  3. xchocoholic

    xchocoholic Senior Member

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    Hi @ggingues,

    Yep. 5-10 mg of 5htp. I was taking 50-300 mg when I first started taking this about 5-6 years ago. Then I realized last year that this plus melatonin was making me soooo sleepy the next day so I weaned myself off of these completely. I weaned myself slowly for physical and psychological benefits.
    )
    I was missing how much better I slept and how relaxed these made me feel so I tried 25 mg about a week ago and that knocked me out. Sooo, 5-10 is what I'm trying now. So far so good.

    What's your regime? Tx .. x
     
    Last edited: Mar 12, 2014
  4. golden

    golden Senior Member

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    Thats great news :)

    I have improved a LOT these last few weeks - but brain still far behing physical improvements.

    On a scale of -3 -2 -1 0 1 2 3

    Current protocol:


    Gluten Free +3
    Plant based diet +3
    Caffiene free +3
    Dairy Free +3
    Daily Avacado/blueberry/cinnamon/rice milk smoothie
    +3
    Perrin technique - overall score - +1 (use daily) [Initially it would score +3 as its a basic. Plus two years of rest and pure detox.]

    E-Lybra 9 - +3

    Safe Bath yoga in epsom salts +3

    Magnesium spray +1

    Vit D3 spray (200)..+1

    Cycling +3

    Mantras: Om Ah Ra Pa Ca Na Dhih +3

    Practice, Protein, Practice, Protein, Practice, Protein +1

    Visualisations (i now have enough energy for this - it was impossible when i had less energy. ) +2

    Ear accupressure +3
    Scalp accurpressure +2

    Special breathing +2

    Most recent Chiropractic appt. -3

    Through all these last few weeks, I was getting lots of symptoms.

    The huge difference is I am recovering from the exertion. And so my body is starting to build up. My stamina is greatly improved. Still have lots of symptoms but they are not taking me over anymore.

    Not well enough to drive though yet. Due to neurological probs.

    I probably have left stuff out or not described as well as i should of.

    :)
     
    Last edited: Mar 13, 2014
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  5. xchocoholic

    xchocoholic Senior Member

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    Thanks @golden

    Great to hear that you're improving. :)
    I'll be checking out what you listed.

    Love the scale idea. I'll have to think about how to use this for my treatments.

    I'm interested in learning what kind of regimes are working for others because most people I know on healthy journeys are needing multiple treatments. And similarities are more rare than I thought they'd be.

    Tc... x
     
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  6. golden

    golden Senior Member

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    I will be interested in peoples current protocol :)

    But my mine is much more personal than i can explain t, its perhaps ayruveda in the background and roughly macrobiotics .... But nothing rigid. Moment to moment.

    And if by chance i can surf on that missing 'x factor' for a while, that too is giving me a boost.

    My actual head, i have to keep quite still though and any vibration through my body sets me back a lot -
    I will be relieved if i get my head back!
     
    Last edited: Mar 13, 2014
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  7. madietodd

    madietodd Senior Member

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    You know I'm always messing with diet, right? I'm about 2 weeks into this one, and I haven't had any brain fog since starting. So, early days, but a significant change.

    Perfect Health Diet, adjusted so I eat about equal amounts (by weight) of proteins, specified starches, specified sugary vegetables and fruits, and leafy greens. Liver weekly. My food choices net me a high anti-inflammatory rating. I eat salmon every day.

    4Tbs raw potato starch in yogurt or kefir, with 2 soil-based probiotics (Primal Defense, Prescript-Assist)

    Separately, one Probiotic-3

    1 cup bone broth

    4g seaweed

    A lot of healthy fats



    4 cups electrolyte water (potassium, calcium) + magnesium and a Pic Min.

    Thorne basic b complex

    7500mg Biotin

    200 mg Co Q 10

    4,000 IU vitamin D as drops

    1,000 mg vitamin C, split into 3 doses (I'm hoping to increase this)

    At bedtime I take 2 Sleep Minerals II, and I usually get to sleep very quickly

    I still wake up a lot during the night, but "normal" has dropped from 5 wakings to 3, in 8 hours.
     
    Last edited: Mar 13, 2014
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  8. xchocoholic

    xchocoholic Senior Member

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    Thanks @madietodd,

    This thread is even more interesting than I thought it would be. It's fascinating to see what pwcs are actually doing and compare that to what we're being instructed to do.

    I'll have to get back with my questions or do some googling another time. I see somethings here I don't recognize.

    I spent the day shopping for winter clothes so I'm physically exhausted amd wired from caffeine. My eyes feel like they're being held open with toothpicks.
    Found some great deals tho. :)

    AND got out of the house. :)

    Tc ... x
     
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  9. xchocoholic

    xchocoholic Senior Member

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    Hi,

    I googled the perrin technique. We have some great info on PR.

    Without realizing it, I had this a few times early in my illness. Getting the upper part of my body massaged, inc my breasts, was too weird for me. It felt good to get those muscles relaxed tho. I'd had 2 whiplash injuries within 6 weeks one year prior to getting cfs.

    I just had a bad reaction to flouroquinolones last year and the reaction was very similar if not the same as I had when I first caught cfs. In 1990, I was given antibiotics for congestion and then all hell broke lose.

    My body wasn't capable of healing itself when I was eating gluten, etc. Now that that burden has lifted, I heal much quicker. It took a few years tho.

    I could still use a good massage tho. Pools are out due to chlorine.

    On an unrelated note, I really need to avoid the winter clothing sales. ;) I've lost 12-15 lbs in the last 3 months tho so my pants are only staying up via belts. Buying a smaller size was great. Caffeine definitely has it's pluses.

    Tc ... x
     
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  10. xchocoholic

    xchocoholic Senior Member

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    @golden

    I get that vibrating head feeling from gluten, coffee, chocolate and tea. I'm not getting it from caffeine pills unless I take too much of course.

    I backed off taking caffeine pills everyday. Having energy during the day feels great but my body doesn't shut it off at bedtime. The upside is that I know what to take to make me sleep tho. I just may not wake up the next day. Lol.
     
    Last edited: Mar 17, 2014
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  11. madietodd

    madietodd Senior Member

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    It never fails. As soon as I talk about a successful regimen, BLAM. The morning after my post I woke up with a swollen gland and hurty throat on that side. It has progressed into a massive head-and-chest cold, which I'm treating with oregano oil, tons of fluids, a little food, and cookies. [Even as sick as I am, I am aware that cookies are not actually food.]
     
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  12. xchocoholic

    xchocoholic Senior Member

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    Sorry to hear that. I do that same damn thing tho. Maybe all those "healthy" vibes are really a warning that the shit's about to hit the fan. Lol.

    Cookies are food ;)

    Hope you feel better soon. X
     
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  13. xchocoholic

    xchocoholic Senior Member

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    Btw. This thread wasn't intended to be about how successful we've been in treating our me/cfs but about what symptoms we're actually treating.

    As in, my biggest obstacle since 2005 has been digestion. I had digestive problems all along but managed these with otc meds and a mostly liquid diet every few months.

    Food is sitting in my gut
    undigested if I don't take numerous digestive enzymes. Smoothies and blended foods are easy on me but not how I want to eat.

    Taking Natural Calm, mag citrate, isn't an option is I want to have a bowel movement.

    I don't know if other pwcs are this concerned over improper digestion.

    Also, we all seem to have sleep issues but mine responded to melatonin, 5htp and either theanine or klonopin. Klonopin works best due to my myoclonus tho.

    I'm not taking the prescription meds recommended for cfs. Except Klonopin.

    Since we pwcs are on the front line here I wonder if we have learned protocals in common.

    Does this make sense anywhere other than my head? Lol.

    Gotta rest... x
     
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  14. xchocoholic

    xchocoholic Senior Member

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    Hi @madietodd,

    Hope you're feeling better.

    I finally looked at the Perfect Health diet.
    It looks a lot like Dr Wahls diet. Still no mention of avoiding high oxalate foods tho. That info has been on the web since 2006 at least so I'm surprised.

    At least people are realizing that grains can cause problems for some people.

    Hi @golden,

    Well I tried meditating the other day but couldn't resist googling instead. I'm learning about alkaline phosphatase.

    My shopping is over for now :) so I can rest again.

    tc .... x

    ps. I was wondering why others haven't responded. I'm finding having a regime vs being tossed about by all the confusion over cfs helps me relax.
     
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  15. golden

    golden Senior Member

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    i thought googling was meditation :)


    i agree with maddietodd...as soon as i post something - it changes!!!

    For example my practice...protein....practice....protein mantra which i pinched from the UK Quorn adverts

    well Mo the athlete collapsed in a race (he speaks this mantra)

    my ever helpful friend said my mantra and jokingly added in Collapse at the end :(

    I couldnt get rid of it then in my brain lol

    practice...protein....practice...protein.......collapse!

    So i had to ditch that altogether.

    Overall, I am needing more and more rest days -
    cant get rid of swollen neck glands, sore throat etc. etc.

    Am to rest, get another crazy elybra9 session and then get back on my bike this week.


    Does anyone have big craters in their skull? (pockets)..
    since ive been alot better they have lessened.

    i first noticed them when i was bedbound and couldnt lift my arms even - I fingernail crawled my way slowly over my scalp (acupressure- )?


    yes I enjoy reading peoples current protocol.... i think though because its a fluctuating condition plus neurological problems it can be difficult to capture maybe

    :)
     
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  16. madietodd

    madietodd Senior Member

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    Ugh, I'm still sick. I finally had to get antibiotics, when it settled into my sinuses and put pressure on my ear, and I got vertigo. So there go all those gut microbes I've been carefully building up!

    I've finally admitted that I can't do Wahls or PHD, because you have to eat so much food. With PHD you're looking at about 4 pounds a day, plus fluids. I eat maybe a pound and a half.

    When I get brain symptoms - heat, racing thoughts, scrambled-feeling, or eyes won't focus right - I do head holds that are sort of from cranial-sacral ideology.

    Find the depression at your temples. Make your hands Ls and with the thumbs between the tmj and your ear, put the hollow of your hands at the temple depressions. Spread your fingers gently around your cranium. I do this lying on my side, with pillows taking the weight of my arms.

    Before, after, or never, put one hand with the hollow over the third eye, and the other hand across the base of the skull, with the hollow below where the skull sticks out. Gently spread the fingers to cover more area.

    Before, after, or never, put one hand with the middle finger on the coccyx and the thumb and fingers spread to cover the hip bones as well as possible, comfortably. The other hand goes either over the third eye, or across the base of the skull.

    It takes a few minutes to notice a shift, and then I always lose track of time and just lay there.
     
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  17. xchocoholic

    xchocoholic Senior Member

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    @golden,

    Adding collapse to your mantra .. lol ...

    My mantra has been counting by one starting at 1001 and slow breathing for decades. That was before Google. ;)

    I forgot to ask. What is a safe yoga bath in epsom salt? I had to stop all baths, including epsom salt due to utis. I've saved a lot of money on Azo. :)

    Gotta get outside for some vitamin D.

    ttyl8r. x
     
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  18. xchocoholic

    xchocoholic Senior Member

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    @madietodd,

    hi. I can't eat that much either so I get the bulk of my fruits and veggies from juicing. I can't juice everyday but when I do, I feel better.

    I'm working on reducing prep time. Like buying washed organic veggies. And not being so picky about having a little dirt. It onky took me 20 minutes the last time. I have to remove stems to reduce oxalates so that takes time.

    Some hfs make juice right in front of you, which is great for most people. I won't help me because they're not concerned with oxalates.

    Trying to keep fresh foods in the house is a pita tho. Dandelion esp goes bad quickly.

    tc ... x
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    My current regime (it will be getting a big overhall within the next couple of months as there is a lot more things I need to add to it due to the issues I have which I should be on or trying)...

    1/ Try to rest when needed (unfortuately that isnt always possible and Im currently being often forced into having to do too much so getting sicker). Getting enough rest is the thing which helps my condition the most.
    2/ Try to avoid chemicals as much as possible (I have MCS)
    3/ Try to keep as cool as possible (the cooler I are the better I feel).
    4/ Try to avoid too much stress.
    5/ Try to stay well hydrated (I drink a lot! and can end up in hospital with dehydration and needing a drip, even when Im drinking a lot)

    Diet
    - Extremely low carb diet with no sugar (far lower then a diabetic one, I cant eat the diets in diabetic books as they are far to high in carb for me, I have severe hyperinsulinemia and get severe reactions when it spikes.. high insulin spikes have caused me to end up in hospital in the past before I knew of my issue to be able to avoid it).

    - I probably should be completely avoiding gluten and I do avoid it a lot. I think I do have issues with it and I have celiac disease genotype, dads brothers have been severe celiacs since toddlers and my father has just now been diagnosed with celiac disease by a new test, the other tests missed his and I havent been well tested and only had standard test. (I can feel very lethargic after eatting breads).

    -I also have the CBS mutation (so have issues with sulphur) and hence are now avoiding eggs as they were making me feel a bit unwell (also of late had issues with brocolli giving me stomach pain).

    - I have food intollerances to some things so need to limit or entirely avoid eg peanuts, cashews, artifical sweeteners, coffee (I can only drink about a quarter of a cup on occassion). At times in the past Ive had issues with dairy (casein I think) and have to stop dairy for a long time.. currently okay with that thou.

    - Supplements I take

    .D3 25,000IU per week (D deficiency)

    .Lithium Orotate (lithium deficiency) 5mg lithium (I need to raise as it has raised my level none with year taking)

    . Molyzinc (100mcg molybdenum deficiency) (After a year of supplementation, Im still deficient thou not as bad, need to swap brand to be able to raise it as I dont want my zinc going up any higher or that will be too high).

    .MegaFolinic 800mcg (the worst MTHFR mutation so cant absorb folate well)

    .Methylcobalamin 5000mg (for the MTHFR and the ME.. I need the methyl group)

    .Selenium spray (started that due to high copper my copper is now fine but I stay on it as its helped my hair and nails)

    .Ashwaganda extract 125mg (adrenal adaptagen..Ive had abnormal cortisol). Need to raise dose as this isnt helping

    . doxylamine succinate 8mg (for sleep when needed, havent taken it for a while)

    . Fibre supplements (IBS-C) or Food Grade Epsom salts, Magnesium Sulfate (IBS-C) .. If I miss my doses there I end up needing enema (Microlax).

    . Potassium (cause Im on Florinef which depletes this)

    . Asprin (when needed).. ME headaches and severe period pain (I take with the other pain killer)

    . Vit C eg 2mg when needed (when allergies are flaring)

    Prescriptions I take

    -Florinef (currently 2 and a half pills from a couple of days ago but probably will have to be raised more, waiting to see if I have another bad collapse. POTS)

    -Clonidine (for my abnormally high noradrenaline and for my hyperadrenalic POTS and orthostatic hypertension)

    . Melatonin 3mg (when needed. currently not taking it but its there)

    - Temazepam 10mg (when needed.. currently not taking it but its there)

    . Salbutamol (I get asthma and breathing issues when I crash.. so when needed, I needed today)

    . Ponstan (pain killer for period pain, when needed)

    . Metoclopramide (for ME nausea.. when needed)

    . Hydrocortisone cream (only use if I get a hives, that God that dont happen often)


    Other prescriptions.. I should be soon on Metformin for my insulin problems. I should also be on a drug for my very high cholestrol but I severely react to the statins so that currently is untreated. I also have 2 other deficiencies which arent being treated right now but hopefully sort out soon (Im just trying to get my current prescriptions right).

    I also should on antivirals but cant find a doctor to treat that unless I have more then 6 viral outbreaks in one year (I get a lot of viral stuff going on including herpes.. and have some kind viral reactiving thing which affects my lungs and makes me cough when I start to crash and this then often ends up leading to my asthma. Ive had EBV and CMV and also carry toxoplasmosis. One dr thinks I have lyme disease and wanted to treat me for that).
    .......

    Other

    - I have to use a wheelchair and need to be pushed while out even for groceries (otherwise I collapse), my wheelchair has raised legs re the POTS.

    - Im also supposed to wear medical compression stockings re the POTS but mine are currently ripped and I havent been able to get back to the place to pick up ones I was fitted for last year. I was wearing thigh high ones but next will be full length cover abdomen.

    - I hopefully soon with get a cool vest re the POTS (thanks to those on this site). (I have severe issues to even temperatures others feel fine with and need to stay cool).
     
    Last edited: Mar 27, 2014
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  20. xchocoholic

    xchocoholic Senior Member

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    @taniaaust1

    thanks. We have several things in common. Digestive issues and hyperinsulinemia. Taking Mag citrate isn't an option for me no matter what I eat.

    I'm finding that taking caffeine pills help me function but I still need to rest quite a bit. If I don't take the caffeine, I take multiple unexpected naps throughout the day. I don't even feel sleepy but I keep waking up from naps. lol.

    Good luck with your new treatments. X
     
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