Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

how did you get out of "bedridden level" ??(even if you are still sick)

Discussion in 'General Treatment' started by alice111, May 7, 2015.

  1. alice111

    alice111 Senior Member

    Messages:
    397
    Likes:
    329
    Canada
    hi all,

    so its been two years now that I have been bedridden. Prior to that I was still very sick but I was able to do soooo much more like leave my house in a wheelchair.

    I can feed myself, get to the bathroom, go on the computer for bits here and there - and I dont take any of that for granted because I know things could be worse...

    BUT I really really just want to get a little more energy so that at least I can leave my house (even if it is in a wheelchair) and have a shower without crashing, or sit up longer.. and just feel a little more human.

    I think a big part of it is the POTS/OI - but also just straight up fatigue.

    I am at a bit of a loss as to which protocol or treatment or med to pursue and try next ..
    I have noticed a lot of people on here while still very sick refer to their "worst times", and seem like they have had some success even if it is small

    so my question is what did you do that helped you get out of bed???

    rx Medications?
    protocols?
    supplements?

    anything would be appreciated
    thanks! :)
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,897
    Likes:
    8,227
    australia (brisbane)
    @alice111 look into modafinil as it can help increase energy and probably vasoconstrict some to help with POTS/OI.

    It is something that will either work straight away or not. Not a so called protocol that u have to wait along time before u can function.

    Dose small like 25-50mg, normal dose is 200mg which might be too much initially for a mecfser.

    There are cheap online sources compared to what many buy locally where sometimes prices are way overinflated.

    Anyway something to talk over with your doctor.

    good luck.
     
    zzz likes this.
  3. cb2

    cb2 Senior Member

    Messages:
    312
    Likes:
    124
    I have been experimenting with provigil myself.. it worked great at first but then it seems to not work on some days. did you take it everyday Heapsreal? are you still taking it?
    Alice 111 have you / are you able to try acupunture? it may be helpful. i use caffine and experiment with the provigil.
     
  4. SOC

    SOC Senior Member

    Messages:
    7,839
    Likes:
    16,548
    @alice111,
    For me, it was unquestionably Valcyte that got me out of bedridden level. Valcyte alone moved me from bedbound to largely housebound, but still quite impaired. It took a whole lot of additional treatments to get me from completely housebound to able to go grocery shopping without a wheelchair.
     
    Rlman, AndyPandy, Valentijn and 3 others like this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,897
    Likes:
    8,227
    australia (brisbane)

    I use it like 3 days in a row than have 4 or more days off. I think anything taken regularly will build tolerance.

    I think ones expectation has alot to do with modafinil. I think many expect it to greatly hype them up like traditional stimulants. First few times it hypes one up some. My opion is that its like only 50% of your brain is working and modafinil increases this to say 80%. Where traditional stims turn the whole brain on but then stirs them up too 100 miles per hour, so more like whipping a dead horse for many of us.

    Dosage plays a role in stimulant meds as i have seen a few take low doses of traditional stims on occassional use and done well.
     
  6. jeff_w

    jeff_w Senior Member

    Messages:
    349
    Likes:
    1,588
    @alice111 -

    I stopped being bedridden by seeing a specialist. Specifically, Valcyte, Famvir, and OI drugs have helped.
     
    Rlman, AndyPandy, SOC and 4 others like this.
  7. ahmo

    ahmo Senior Member

    Messages:
    4,374
    Likes:
    6,619
    Northcoast NSW, Australia
    AndyPandy and oceiv like this.
  8. lansbergen

    lansbergen Senior Member

    Messages:
    2,509
    Likes:
    2,716
    Taking an immune modulator and try to stay within my limits.

    Nothing else. No other meds, no supplements and no dieet,

    I think anything that can help to bring the immune system back in balance can help somewhat. .
     
    AndyPandy and oceiv like this.
  9. WoolPippi

    WoolPippi Senior Member

    Messages:
    507
    Likes:
    1,370
    Netherlands
    I took away any body burden I could think of, starting with food. Never another vegetable or nut or grain since they require so much energy to digest. Chicken soup all day every day. Plus HCL to save even more digestive energy.

    I compared my body cells to cells in petri dishes in labs and started to feed them like they do in labs: full mineral supplements. Full amino acid supplement. Enough blood pressure to get it to their membranes (by lying down and taking salt). Also: a Multi Gland supplement.

    Getting the foods to the cells is one thing, getting the waste away from them is the other body burden to lessen. For this the lymph system needs to be activated: gently stretching and yawning while I lied down. First thing I do when I wake up. Not raising the heart rate. More like a cat or dog does, before curling up to continue sleeping.

    I did this for 2 years and found I could stay out of bed longer. Then I began to take Hydrocortison and things sped up.

    Other body burdens: showering; filthy or dusty bed linens; unbrushed teeth; cold; light; noise; awful people; worries.

    my actions: I washed myself once a week; bought extra linens online so I could rotate more often before doing laundry; brushed my teeth before noon and at night, kept the stuff at night stand; wore hats and wristwarmers and legwarmers and socks all the time in bed, also 4 blankets; ear mufflers plus ear plugs; kicked in-laws out of my life; allotted only certain time slots for worrying or thinking up health tactics. Took up knitting to sooth my nervous system and entertain my brain.

    I didn't know about this site, methylation or anti-virals. It would have helped me more I'm sure.
     
  10. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,834
    A low dose of Strattera (prescription med) and then a low dose of Yohimbe (supplement, OTC in some countries but unavailable in others). Both supposedly work by increasing the effectiveness or amount of norepinephrine, which repeatedly tested low for me. I doubt they'd be of any use for someone who has normal or elevated norepinephrine levels.
     
  11. ZudZud

    ZudZud

    Messages:
    28
    Likes:
    15
    Methylcobalamin
    Vitamin D

    Those were probably crucial for me.

    Check for possible infections, lymph nodes, took antibiotics when necessary, had some old tooth infection (throat too) that I did not know of, still not fully fixed, but removing what was there helped a lot.

    Liver protectors: liv52, silymarin, essentiale forte

    Try effervescent multivitamins, it's my experience that they are absorbed differently.

    Other things to try: Vitamin C, green tea (the actual drink, not concentrates), energy drinks, Iodine (turns out it's very important)

    One other thing that seems to help me is really fresh meat and sometimes frozen bags of mixed vegetables.

    I'm not done trying the whole methylation protocol thing, but SAM-e seems to give me a nice boost, sometimes methylfolate. IMO it's worth reading up on it.

    Try cooking bone broths if you have the energy to prepare things, a "concentrated" chicken soup sometimes helps, it's about the minerals and proteins and whatever else is in there.

    Keep at it!
     
    AndyPandy likes this.
  12. lnester7

    lnester7 Seven

    Messages:
    2,491
    Likes:
    3,608
    USA
    I have the theroy that we get too orthostatic Intolerant why we end up bed ridden.
    I was out of bed ridden same day I started florinef (walk mile and a half next day), then I added Midorine. There is a whole talk about possible medications for it.
    https://www.youtube.com/playlist?list=PLBPPJmonlKtBFKNgLbTHii3Ad_OnY5erV

    Now I added beta blocker (propalinol?)

    The trick is to try things until u find the right combination of meds to combat it.
     
    AndyPandy and alice111 like this.
  13. SOC

    SOC Senior Member

    Messages:
    7,839
    Likes:
    16,548
    That fits my experience. Seeing the top ME/CFS specialist was critical. The main three treatments that made the biggest difference were Valcyte (as I said above), Valtrex (instead of Famvir, but very similar), and OI meds.
     
    AndyPandy and jeff_w like this.
  14. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

    Messages:
    505
    Likes:
    553
    USA
    Body burdens - well said! The 2 biggest burdens are digestion and defecation. I should take up liquid diets on bad days - that way, both my digestion and defecation energies are conserved.
     
  15. alice111

    alice111 Senior Member

    Messages:
    397
    Likes:
    329
    Canada
    Thanks so much everyone!!!
    @heapsreal and @cb2
    How does midordirne or provigil compare to Dexedrine? I have been on Dexedrine for about 5 years now. Would I use either of these instead or in addition to?
     
  16. alice111

    alice111 Senior Member

    Messages:
    397
    Likes:
    329
    Canada
    Thank you! Which OI drugs in particular?
     
    jeff_w likes this.
  17. alice111

    alice111 Senior Member

    Messages:
    397
    Likes:
    329
    Canada
    What immun modulator did you use?
     
  18. lansbergen

    lansbergen Senior Member

    Messages:
    2,509
    Likes:
    2,716
    levamisole
     
  19. alice111

    alice111 Senior Member

    Messages:
    397
    Likes:
    329
    Canada
    @WoolPippi how much hydrocortisone did you take? And for how long?
    Thanks! :)
     
  20. alice111

    alice111 Senior Member

    Messages:
    397
    Likes:
    329
    Canada
    @SOC and @jeff_w do you mind my asking who your specialists are?

    I have been to many "cfs" specialist who turn out to know nothing:(

    We're both of you diagnosed with viruses prior to antivirals?
     

See more popular forum discussions.

Share This Page