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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Adrenal burnout and treatment problems

Discussion in 'Adrenal Dysfunction' started by Misfit Toy, Feb 23, 2010.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Thoroughly disgusted. 2 years ago, I was able to go to Boca Raton and drive 7 hours to Vermont by myself, now I can barely talk on the phone. I started with perimenopause and then was also diagnosed with adrenal problems. Beyond low cortisol. I have low estrogen, testesterone, and progesterone too.

    I am dealing with The Clymer Clinic and Woodlands Healing where Dr. Poesnecker once was the leader in adrenal problems. Honestly, everything they have tried on me has made me worse. ACE, I am on now and I am becoming more and more tired. I could not take Cortef or Isocort AT ALL. They both put me in bed.

    Dr. William Kracht wants me to go on Pregnenelone. I am at a loss.

    Here are my symptoms. I HAVE NEVER HAD THIS UNTIL THIS PAST YEAR. I can barely talk at times, I can't catch my breath, I can't concentrate, I feel winded without doing anything. That is the worst part; being so tired that you cannot talk and breathing feels labored. I feel like I need oxygen.

    Dr. Kracht has begun to shake his head. I am being told it is the perimenopause that is doing this. I don't know what is doing it, all I know is that what once was easy to do is becoming impossible. I know many with CFS suffer with this, but for it to just happen to me is very hard to understand. I was sick for 19 years before having this.

    To try and explain that I can't talk to someone because I am winded....NO ONE gets that. Not even those who are sick.

    Has anyone tried ACE and had problems? Tried adrenal things and had problems and what has helped you?

    I am taking tri salts, ACE, tyrosine and no real benefit. The tyrosine helps my mood so that is a positive.

    I don't know what to do. I was told by one friend to contact Dr. Lam. Any suggestions would be greatly appreciated.
     
  2. Luke

    Luke ooph

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    Hi Spitfire, sorry to hear things are so complex for you at the moment. I thought I'd copy over my post from the air hunger/shortness of breath thread in the symptoms section on the off chance it could be of any help for your breathing issues.



    A very simple technique I've found useful for these kind of symptoms is to touch the tip of your thumb to the tip of your ring finger ( can be done with just one or both hands), or to wrap the fingers of of one hand around the ring finger of your other hand.

    These techniques always calm and deepen my breath and incease my sense of oxygen satiation. I was taught this by someone who practices Jin Shin Jyutsu who said she used it to increase her oxygen intake so she could outwalk her teenage sons.

    I've also found the breathing technique below that's recommended by Dr Cheney to be helpful. It's supposed to make our bodies think we're at a higher altitude and improve oxygen transportation, link to full article here.


    1,Inhale through your nose for four seconds
    2,Hold your breath for seven seconds
    3,Exhale through tightly pursed lips, creating "back pressure," for eight seconds.
    4,Do this eight times, twice a day, everyday.
     
  3. Wayne

    Wayne Senior Member

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    Hi Spitfire,

    Sorry to hear about your difficulties. It sounds truly frustrating.

    Regarding Dr. Poesnecker; I read and studied much of his books and reading material. For many years, he focused on treating adrenal insufficiency (which I believe he called "Adrenal Syndrome"). I think he helped a lot of people, but I think his later thinking was flawed when he equated CFS with Adrenal Syndrome. I believe they are two separate conditions, which often overlay each other. Treating CFS is, in my mind, a much different story, and doesn't always respond well to typical adrenal support. A number of people on this board have not had good experiences with Cortef, etc.

    I've taken Cortef for over ten years now, and it has been immensely helpful for my adrenal insufficiency. But I still only function at about 25-30%, and that is because I have ME/CFS as well. It doesn't appear that Dr. Poesnecker or his clinic has ever made that distinction, and this could likely result in inappropriate treatment at times. I would proceed cautiously, as your experience so far does not seem to be supporting you the way it should.

    All the best, Wayne
     
  4. Kati

    Kati Patient in training

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    Spitfire, just my 2 cents here, but maybe the solution is treating the problem at the cause, which may well be XMRV and the co-infections. We know that XMRV tends to dysregulate the endocrine system. I get shortness of breath too and chest pains and I attribute that to orthostatic intolerance and low blood volume. Also you mention that steroids put you in bed, which is a clue that you may well have XMRV, since it thrives with steroids.

    Sorry you're having such a rough time. We all can't wait till the new XMRV developments, and future opening of WPI.
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    Is there a test for it? I admit, I have not been following it because in 21 years they thought it was EBV, mycoplasma and coinfections. I don't know what to believe anymore. From what I have heard, the results aren't promising...right? How to treat?
     
  6. Kati

    Kati Patient in training

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    Spitfire, XMRV could explain all the other co-infections- this retro-virus acts by disabling the immune system and allowing all kinds of pathogens to thrive in your body. It is also believed to "feed" or perhaps use cortisol and sex hormones like testosterone, estrogens and progesterone in your body. This is still early in the research, but Dr Mikovits at WPI is sure this new retrovirus exists, and there are many more studies trying to replicate what she did to confirm. At WPI if you register in the database (www.wpinstitute.org click on the questionaire at the bottom right) they may call you very soon to be part in their bigger study than the first one and they will test you for free, to find out if you have the retrovirus.

    There are no treatments available at the moment, and likely your family dr doesn't know yet about XMRV, but that will come soon enough. WPI and pharmaceutical companies are working on drugs that are likely to respond in eradicating/ keeping XMRV "quiet". WPI is planning to open to see patients and do trials in September and as far as I know they are on schedule. I have also heard the clinical trials will be multicentered, which means you could possibly participate closer to home.

    I have only been sick for 15 months, starting with EBV and goodness knows what else I got, and I have a lot of hopes in WPI and their researches. Hang in there and please fill out the WPI form, it doesn't oblige you in any way and will allow you to be tested properly.

    Hugs, Kati
     
  7. caledonia

    caledonia

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    I have adrenal fatigue too. I'm having a lot of problems finding a good treatment, although different reactions from yours. I've tried various adrenal glandulars, DHEA, etc and they are all too overstimulating. I finally found a dose of a glandular that works and it's so tiny - 1/256 of one capsule! It helps a little bit. Also taking sea salt and vitamin C. I'm at the point of craving salt and if I'm feeling wierd some salt water can pick me up. I'm supposed to try ACE and possibly Cortef.

    The theory about XMRV reactivating in the presence of the steroids is very interesting and might explain your wierd reaction.

    If you've read Rich Vank's methylation cycle block stuff, the adrenals may actually be all right, they just aren't getting signals they need to produce cortisol. The problem is caused by a partial methylation cycle block which causes all kinds of things to malfunction. You would correct it by taking the active forms of B-12 and folic acid.

    As far as being winded, I've had problems during my sleep and for several hours after waking. It turns out, I have acid reflux of which the only symptom is waking up many times a night with my heart racing and pounding. As long as I sleep on a wedge pillow (and don't slip down during the night) and wait an hour after eating before lying down to sleep, I'm generally ok.

    How is your thyroid doing? Have you had a complete thyroid panel, not just TSH? The thyroid and adrenals work together. If there is a problem with one, it's good to check out the other.

    I don't know if any of these things apply to you, but just wanted you to know I understand your frustration.
     
  8. rainbow11

    rainbow11 Guest

    Spitfire... I did have similar symptoms and complaints as yours back in 2001. Allergy elimination, NAET, did help me tremendously, especially with the breathing. You can do a search on line in your area to find practitioners trained in this. Try to get one that has completed the Advanced Class. If you have any questions, I'd be glad to answer them.


    rainbow
     
  9. Misfit Toy

    Misfit Toy Senior Member

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    Stopping the ACE helped me. The ACE was making me exhausted and unable to catch my breath. Isocort, Cortef and now ACE make me worse.
     
  10. cfs since 1998

    cfs since 1998 *****

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    I just remembered this. Dr. Cheney uses various cell signaling factors, which are made from animal organs. He has found that adrenal cell signaling factors makes his patients worse, he calls this "backflash". Maybe something similar was going on with the supplements you were taking.
     
  11. Carrigon

    Carrigon Senior Member

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    My guess is, you over did it and it stripped your glands. This happened to me once. I pushed it, way above and beyond, ended up where I couldn't speak above a weak whisper. I actually felt like I was going to die, it was an awful feeling. Really the only thing that helped was alot of rest for alot of months. And I'd suggest trying something like spirutein to build yourself back up. A strong multi vitamin/mineral/amino acid combo. Even if you didn't over do it, I've gone through periods of time where I just plain got worse for no reason at all. Make sure you got a thyroid antibody test. Hashimoto's can also drain you dry like that.
     
  12. brenda

    brenda Senior Member

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    spit

    Air hunger is a sign of one of the Lyme co-infections. Have you had a test for them or Lyme?

    I have adrenal exhaustion too and could not take the glandulars. There are other things you can take to help them like liquorice and salt water and getting to sleep before 10pm. There is advice online. The thing that interested me is that I read that they have really good natural treatments in Russia for this condition. I never did get very far in investgating it so thanks for the reminder.
     
  13. maryb

    maryb iherb code TAK122

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    Spit - hope you're feeling a bit better after stopping the ACE. I've heard many tales about adrenals/ thyroid issues from people with this illness. Trouble is an endocrinologist won't have the same knowledge as a ME specialist so its trying to find a way through with what both advise but treatments have to complimenting each other too. The liquorice tinctures are prescribed by a very good thyroid doc here in the UK, but like everything you really should be monitored by a doctor if you take these supplements. I couldn't tolerate them I'm so sensitive. I think the advice about the allergies, gut issues is sensible if you can address those, you may be able to tolerate other things better.
    I've just had some tests done with a top endocrinologist based in CA, his treatment is in the form of creams , so am waiting to see how those go.
    I hope you feel a little better soon, its no fun is it? but at least we understand. take care.
     
  14. nanciswell

    nanciswell

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    I had alot of your symptoms which have gotten more manageable .

    Air hunger can be from mitral valve prolapse ,, which goes along with chronic fatigue.. if you can tolerate coq10.. that really helps.. carnitine would be good as well.

    I find the following helpful..{ I can no longer tolerate coq10} I avoid all foods I am sesntiive to.. ie most foods as I cannot tolerate salicylate/ amines/ glutamates/ sulfites/ sulfur foods/ A good website is www.plantpoisonsandrottenstuff.info This was the most important step . I took too long to try an elimination diet for fear of not having enough food to eat.. Well I now really regret having lost alot of time.

    With this avoided food reactions my adrenals are no longer overly active and stressed and I can finally tolerate hydrocortisol cream.. I do alot of epsom salts baths as being salicylate sensitive I have a higher need for sulfate.. B12 therapy also helps.. Taking niacinamide for my fast phase liver helps with feelings of panic/ breathing problems/fatigue/ liver problems. Also treating myself for gut flora imbalance .. I am doing frequent dose chelation in order to lower my high levels of arsenic,lead and mercury..

    nanci
     
  15. Misfit Toy

    Misfit Toy Senior Member

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    Yes! Ace is made from animals. Perhaps! Much worse on it.
     
  16. Sunday

    Sunday Senior Member

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    Spitfire, I agree that it might be worth your while to check out the B12/methylation theory. I am on that and I have lost a few of the symptoms you described (didn't have such extreme shortness of breath). Before I took B12, nothing I took seemed to make a lot of difference EXCEPT

    Chinese herb blends from www.taohealingarts.com. I'm not affiliated, I'm not selling...I've just had a good experience with Dr. Chang's version of Taoist healing. I read Stephen Chang's book when I had another chronic disease I wasn't going to bow to (AMA medicine informed me there was no cure and get a support group), and his internal exercises got me out of it. So I recommend those, but also his herb blends which are of very high quality. I tried them when I got CFS, and they really have helped a lot of my symptoms - I'm not sure if they help the underlying condition or not. The Chinese system of medicine is different from ours, but their are several blends there which address the kidneys (in TCM, equated with the adrenals). There's an herbal consult service on the site if you want to use it. They aren't cheap but you use very little so each jar last about 6 weeks.
     
  17. nanciswell

    nanciswell

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    I have the severe fatigue, winded... pain

    I am now taking hydrocortisone cream.. It can be purchased over the counter. I dab some on my skin { using the one are for three days , then rotating to another area as it can cause the skin to thin.]

    I have tried the ACE and reacted badly to it.. with an intial high.. then my usual big down with fatigue and sleeplessness after being on it for a bit. It could be because it is made from animals ,Meat forms what is called an amine as it ages which is a natural chemical which my body cannot break down..

    I think it is Cortef which has the herb echinacea in it?? All herbs but parsely and saffron { I think it is } are high in the chemical salicylates which people like us can have problems with.

    I have been experimenting with other things and find these helpful for my heart , fatigue.. THe b12 does help.. Epsom salts I have to have several times a day and find it vital .. I either do baths or as it is getting expensive I put the water solution on my skin and let it dry..If I dont have it I am out of breath, severe fatigue and pain in my lower abdomen , ALot of us chronic fatiguers lack the proper amount of sulfate and epsom salts on the skin boost these levels. Also the magnesium is good for the heart etc..

    Coq10 is great for the heart .. I cured mitral valve prolapse in under a month.. Now I cannot tolerate it anymore. so take carnitine

    I take niacinamide for my fast phase one liver , I am getting a test done for a disease called pyroluria which leads to a deficiency of b6 and zinc both of which I do well with.. hoping this may be part of my picture..

    nanci
     
  18. Misfit Toy

    Misfit Toy Senior Member

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    Wow, how do I save all of this thread? I am scared to take the hydro cream because I did so poorly on the hydro capsule. Much more fatigued on it. It rested my adrenals too much. I do have mitral valve but know that that is not it. That is not what makes me short of breath. The feeling of heaviness and fatigue does that. I am going to be tested for lyme. I am really hoping I don't have that. I will be so upset. I have a horrible time with antibiotics.

    I am seeing an accupuncturist and herbalist/ MD on 3/16. I have a feeling this guy is going to help. He is noted as one of the top docs and a man who everyone goes to when they don't know what is wrong. He does kineseology testing too and practices western med. We shall see! Maybe he will give me some licorice!

    I am going to start the folapro tonight. A very very small amount. I did this before and had major detox but at 1/2 a pill. But boy, when I went off of it, my mind was clear again! It was unreal!
     
  19. Carter Burke

    Carter Burke Guest

    I had exactly those symptoms: feeling like it was too much effort to breathe (exhausted respiratory muscles), feeling like the muscles in my throat/vocal chords were too tired to function when talking on the phone, general air hunger all the time.

    I also had the regular need to take big, deep breaths/sighs, and a tendency to anxiety/panic, light headedness, etc. and adrenal fatigue followed.

    It sounds very similar to what you've experienced.

    Anyway, many of my symptoms turned out to be caused by Hyperventilation Syndrome. A difficult condition to understand, but basically it's habitual overbreathing, and can be corrected with a fairly strict breathing technique called: The Buteyko Technique. (Which is also used to treat asthma - and a book I always recommend is: Close Your Mouth, or Asthma Free Naturally, both by Patrick Mckeown.)

    Hyperventilation syndrome is usually set in place by nothing more than stress - whether psychological/viral/environmental/etc. But it becomes a vicious cycle as the brain becomes habituated to much lower concentrations of CO2 (which has to be readjusted slowly with the underbreathing exercises), the body loses magnesium and zinc, the immune system's impaired and the body's acid/base balance is messed up. (It's also common in mitral valve prolapse btw.)

    I don't know how big a factor this might be in your case, but I suspect it's at least a part of the big picture. There's a simple test called a Control Pause. You can find all the info online, it's really quite simple - certainly don't pay for courses or anything, the technique's really just breathing less, but does take some commitment as it feels unpleasant early on and is easy to be lazy about. (It can be difficult to accept that such severe symptoms - HVS can mimic almost any serious health problem - could be caused by something as simple and treatable as breathing too much. Believe me, they can.)


    Adrenal and immune problems usually follow. Overbreathing really causes profound biochemical imbalances in the body.

    Fix the breathing first - get your control pause up to around 35-40 seconds at least - then fixing the adrenals, I find, is just about rest and good nutrition.

    Obviously there's the book: Adrenal Fatigue the 21st century stress syndrome. Basically: lots of vitamin C, replace all the minerals you need (esp magnesium and zinc), B complex, and LOTS of horizontal resting. Whenever I'm resting, I'm lying down.

    Get your breathing better and 90% of the acute symptoms will probably reduce or go completely. That can be done in a relatively short period of time. Recovering full energy and adrenal function is SLOW. Think: 0.3% improvement/day if you're getting great nutrition, keeping the breathing good and resting horizontally a lot - enough to minimise or null fatigue symptoms.


    Personally, I think all this XMRV stuff is just another red herring. I don't think it's a root cause of the condition at all. I think if you recover enough health on the usual protocols the body can deal with XMRV and all manner of other subclinical infections you tend to pick up.

    (Obviously not guaranteeing Hyperventilation Syndrome IS what you've got, but my specialist sees it in almost everyone with CFS anyway, and I can certainly believe that. Criminally underdiagnosed. I think if I'd started Buteyko exercises earlier I'd have avoided CFS altogether.)
     
  20. powertool4

    powertool4

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    I also experimented with ACE and it actually worked for me. The problem though, was that it would make me feel pretty good and the thing i noticed the best was i was able to breath SO CLEARLY in months like i was in the mountains. It was incredible. I felt great. but after a few hours, i crashed hard. Started having jittery feelings, very scared, anxious, etc. and extremely extremely so tired and sleepy and unable to breath. If i took about 8/day then maybe it would've helped but i felt something wasn't right. Symptoms wise, i treated myself for a b12 deficiency and that helped strengthen my adrenals. the breathing however, got worse on b12.

    do you notice that when you are not able to breathe your tongue is swollen? did you ever take a look?
    a few months ago i was in such bad shape i could not takl on the phone (walking was out of the option) without feeling SO drained. I would have to focus and push through and my body would kick into fight or flight mode and adrenaline would start pumping, heart beating and it would give me energy that way. It would leave me even more exhausted. My adrenals were kicking out adrenaline as a last resort type to get me through things.

    Have you looked into food allergies? have you tried NAET? I have looked into NAET but i don't know if i buy it.. it seems kind of sketch. Ive done a skin test but they dont show much about reactions when ingested but the RAST blood test might be a better option. Food allergies or leaky gut that's chronic may be the cause of adrenal fatigue since an allergic response (especially chronic) taxes the adrenals for anti-inflammatory responses and production of cortisol, etc. Stressful situations, and i've been told that an unoptimized thyroid can tax the adrenals as well. That's a little chicken and egg though since you don't know whether the thyroid gave out first, or the adrenals are the ones causing thyroid dysfunction.

    EDIT:
    http://www.schwarzbeinprinciple.com/pgs/newsletters/SP_Newsletter_InfDig_Part2.pdf

    I found this article and it is dead on. I've had digestion problems for a while that i ignored and bodybuilding and shoving 200grams of protein and a day into my body along with junk food and all sorts of things caused inflammation that eventually made me crash.
     

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