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Extremely tired/sleepy Hydrocortisone

Discussion in 'General Treatment' started by Grigor, Feb 1, 2014.

  1. Grigor

    Grigor

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    Hello. I'm new to the forum not new to ME. Got it for about 8 years now. But started HC after having it tested by a 24h saliva test and the morning is too low.

    Anyways I'm now on 2,5 mg HC but I'm so crazy sleepy because of it . So I wake up make some food. Which I already hardly managed before the HC and now after the HC kicks in I need to go straight to bed till basically it's night time.

    It's day 4 now. Will this wear off ?? Cause otherwise this might not be for me . Wayyyy to sensitive to meds anyways.

    Hope someone has similar experiences and can help me out . ( Sorry for my english )

    Grigor .
     
    rosie26 likes this.
  2. joshi81

    joshi81 Senior Member

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    Hi grigor which symptoms do you have, i mean basically wothout HC, do you ave muscle pain or soreness, twitching, or other form of pain/soreness or just the tiredness?
     
  3. Grigor

    Grigor

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    Hi Joshi,

    Well of course exhausted. Acid muscles. That last several days after minimal movement. De-realisation. Anxiety ( pretty recent). Bad sleep. Oversensitive to light, noise, smell etc.

    Used to be a top athlete. Now I'm one in bed. It's harder work now then when I was in top shape.
     
    rosie26 likes this.
  4. joshi81

    joshi81 Senior Member

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    i can understand u i was an athlete too...and now if i run (because i do try to run in spite of my symptoms) i get soon breathless, i mean after 30 meters.
    What do you mean by acid muscles? for example if you stay still do you feel any sensation in your muscles or just when you move an do something? if you try to press with your fingers on your muscles are they sore even at rest?
     
  5. Grigor

    Grigor

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    It's more the acid feeling when you just ran like crazy . Or uphill biking. Or when you have the flue and fever .
    So yeah also when I stand still. But when I moved. it will stay for days or weeks.
    And yeah they are a little sore but more tender then sore I would say.

    But do you take Hydrocortisone ?? :)
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is it 2.5mg your taking or 25mg the ,,, in between the 2 and the 5 is abit confusing. if its 2.5mg thats low, generally 5-10mg first up, if its 25mgs well thats quite alot and the higher doses could shut the adrenals down so a few hours afterwards u mayb be left with lower cortisol then before u started? do u take dhea with it? checked other hormones ie thyroid, testosterone etc.

    Possibly u could also be a quick metabolizer of hc, some then switch to an equivalent dose of prednisone or methylpred. 1mg of pred = 5mg hc.

    Just a thought?
     
  7. Grigor

    Grigor

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    I'm on 2 point 5 ;-) So it's a small dose. But I'm over sensitive to everything. So doesn't really come as a surprise.

    Not taking anything with it yet.

    Was actually hoping other people experienced the same. But guess not.

    The thing is I got my hormones tested but by blood and all was good.
    Only when the saliva was tested things were not. But that test I need to pay myself . So don't really have the bucks to pay up for the others now.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Grigor sometimes with blood tests for hormones can test within range and said to be normal. So if your not a golden oldie then optimal levels of say testosterone and dhea should test in the upper third of the normal range, if in the lower third then thats probably the level of a healthy old man, so worth considering??

    Instead of hc u could consider pregnenolone which can help with all hormones to a certain degree??

    The other thing is that the main issues with cfs/me are infection/immune related, have u had this tested thoroughly? again some gp's arent real good at reading these either for cfs/me people.

    We generally have a few issues going on so sometimes we can treat one dysfunction but not see any benefit from them until we get on top of a few of them. i guess we are chasing our tail and trying to treat the abnormalities even though we dont really know the actual cause of whats going on??
     
  9. Martial

    Martial Senior Member

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    I have lyme and present a pretty similar symptom set to what you mentioned.. maybe look into getting checked for that.. I never used hydrocortisone or anything though, just had the extreme tiredness and unrefreshing sleep. I had a sleep study done as well which showed some restless leg syndrome, and I get occassional sleep apnea from blocked passagess.
     
  10. Starfive

    Starfive

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    Seems like I have been reading about lactic acid in the legs is what is the cause of the intense pain. My leg pain is excruciating, aching 24/7 and only pain meds help. Sometimes I use Voltaren which is a cream as well as the oral pain meds. Rubbing it in my muscles gives some minor relief. My doctor offered steroids as treatment for the overall sense of inflammation but I declined due to the unknown damage steroids can do to the immune system.
     
  11. Martial

    Martial Senior Member

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    what would cause you too much lacticacid build up though? the only times I have ever gotten that noticeably is with extreme physical exertion, or training to burn out in the gym
     
  12. Grigor

    Grigor

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    Hi,

    Yeah been tested on Lyme. Not only by my GP but also by a special clinic and De Meileir. Was negative.

    The acid has to do with the aerobe fuction not working well with ME. So it's always counting on anaerobe. Which cause lactic acid.

    So from the reactions I seem to be the only one with this reaction on Hydrocortisone lol;-)
     
  13. Grigor

    Grigor

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    @heapsreal :

    Yeah I've been treated in Brussels by the Meirleir want to get back to him but I'm to weak to even get to the other side of the street. Been longer then 2 years that I saw him so I need to go there in person. It's top far for me.
    Kind of only can call my GP in the hope we can get something done.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What did de meirleir find in his testing?
     
  15. Grigor

    Grigor

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    Need to check . Just moved. Papers are somewhere. But what I remember . High CMV, streptococcus in the intestines. and bartonella. Maybe other stuff but I was not as well read about the whole matter compared to now.
    I think my adrenals were not tested at the time with a saliva test but might be wrong . Don't remember.
     
  16. Grigor

    Grigor

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    I improved dramatically at that time . From sofa to rather active ( for an ME patient) but couldn't pay the treatment and after 2 and a half years huge crash. As where I am in now for a year .
     
    heapsreal likes this.
  17. joshi81

    joshi81 Senior Member

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    Hi, no i do not take hydrocortisone because my saliva test showed a normal cortisol response and a normal DEHA.
    My sensation is like, well imagine when you walk a lot, then you came back at home and lie in the bed to rest and you have that sensation of "soreness" , i do not know the exact word in english because i'm italian, but it's not a real pain or an intense pain, it is a background feeling of lactic acid, like a slight burning of muscles, feet.... here is the sensation i'm referring to wich i feel quite everywhere, also in hands. I feel it more as soon as i wake up in the bed and it slightly get better when i start to move a little bit, but it is still there.
    And there are a lot of areas in the body that if i press with my finger they are always sore 24/7, and then there is the breathlessness obviosuly.
    But i don't know if it is lactic acid, i had it checked 3 times in these years and it was always normal.
    @Grigor and @Martial which test did you run for borrelia? i have just done the LTT test at infectolab and i'm waiting results becaus at the start of my story my antibodies were borerline for borrelia and i was working with farm animals.
    And Martial wich cure are u following for borrelia?
     
  18. Martial

    Martial Senior Member

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    @Grigor , How did they propose that your adrenal function got out of regulation, Which caused them to prescribe you the hydrocortisone in the first place? Also I know you said you tested negative for lyme, which test did they give you at the specialist? The reason I asked is because you mentioned Bartonella which is extremely common co infection with lyme.

    @joshi81, I am using the IgeneX test with my LLMD it is supposed to be the most accurate test they have up to date.. Using western blot alone can show false negatives at times, or if someone does not know how to properly read results they may miss things...

    I am using an herbal antibiotic that are actually stronger then even IV Doxy without the risks of toxicity on the body, and no destruction to good bacteria in the gut.

    The main one is called Prima Una De Gato, this is a natural anti bacterial, anti fungal, anti viral but especially strong for treating chronic infection like lyme, it is very good at getting into even deep parts of the CNS system and crossing the BBB to eradicate any remaining bacteria.. Also is cyst and bio film busting so it kills the bacteria even in the dormant stages or the burrowing it will do to protect against pharmaceutical antibiotics .. Its the TOA free version of Cat's Claw.

    I had to start very slow and work my way up in dosing, but that is my main tool in treating the Lyme.. Eventually I will include several other bacterial clearing herbal tinctures but need to get used to this first one before that.. Also I will be including Lumbrokinose eventually which is something that helps the herbal abx reach deeper into cysts, bio films, and different area's in the body.

    Alongside those things I use hyperthermic treatments, A dry skin brush to help flush out toxins, epsom salt baths to detox, a very strong anti inflammatory, and healing diet..

    I also use fermented fish cod oil, and theracurmin for the inflammation, and Resveratrol, Chlorella, and glutathione shots for oxidative protection.

    Alongside the lyme treatment protocol I also use Fredd's Methylation protocol.

    @Grigor again, I higly suggest you check out and use Prima Una De Gato for the Bartonella. It is one of the main things that can actually compeletely eradicate the bacteria in all stages of life, and enter into all the systems it would be hiding.. Be very careful with raising the dose though.. Start at one drop a day and VERY GRADUALLY work up to the recommended 5 drops three times a day dosage.. The herx reaction you can get from bacteria kill off can send off an inflammatory response, and if you kill too much at once you will create a more of a toxin dump then your body can handle.
     
  19. Grigor

    Grigor

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    I was tested by a special lab called Pro Health in the Netherlands. Yes I would love to be tested by the one is Ausburg Germany . But I have no more money .
    But yeah heard Bartonella was linked .

    I started HC cause I had a huge crash and haave problems needing to eat every 2 hours otherwise losing it like crazy.

    Asked for the test myself and it's too low.

    Honestly I don't know if Bartonella is still an issue . It was tested by Dr. De Meirleir but no other doctor here in NL can probably test it lol.
     
  20. Martial

    Martial Senior Member

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    @Grigor I would not be surprised, Bartonella is very hard to treat requiring pretty damn long term treatment of either strong pharm grade antibiotics therapy, or strong natural herbal antibiotics the latter being the smarter and safer choice obviously.. It gets deep enough into every physiological system that a pretty demanding treatment plan is needed to fully eradicate it..

    It can also cause all the symptoms of M.E. here is a link to a girl in England who had it pretty bad, lyme with co infection.

    http://decimawho.wordpress.com/

    she also has severe post exertional fatigue, and other symptoms I always thought were exclusive to M.E.

    Anyways worth looking into seriously man as you could actually cure yourself and get a proper treatment plan if it is the source of your current issues like it is mine. If you had been tested positive Bartonella before I can almost guarantee unless you followed serious treatment for it that it is still lingering..

    Also on a side note what do you guys do to help breathlessness and issues with POTS? I have it pretty bad and the lack of physical exercise can sometimes make it a vicious cycle..
     

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