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Breathing Problems In ME/CFS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by AndrewB, Sep 19, 2011.

  1. mellster

    mellster Marco

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    Thanks it's true that you should never discount anything. I have tried it last year but mainly for the cramping and it didn't help at all. While I don't feel any acid reflux it does not mean it's not there, I have some of the weaker h2 blockers plus some omeprazole left, maybe I'll give it a shot. But the way Athene described the symptoms was an eerie experience, esp. the corset around the chest - I sometimes have that even when I breathe totally fine. Actually the breathing (and IBS/cramping) has improved quite a bit lately, but I still have that chest wall ache with tenderness on certain spots on and off. If I could afford it I would go for a daily massage just to relieve that muscoskeletal ache.
     
  2. Waverunner

    Waverunner Senior Member

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    I have exactly the same problem but only when I'm really fatigued. I can still move my chest but it costs so much energy to breath deeply so the body seems to prefer taking many shallow breaths.
     
  3. Athene

    Athene ihateticks.me

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    Hi Mellster,

    I meant to reply to your questions sooner but I have had a bit of a bad week and been really busy as well.

    Well, firstly, exercise. I was put immediately on an exercise routine which involved using an exercise bike for 20 minutes a day while breathing from an oxygen mask. This allows the body to get the maximum benefits of exercise (stimulating immune system, strengthening unused muscles, richly oxygenated blood which apparently helps kill bacteria... and I can certainly tell you it blasts away some of the brain fog!) WITHOUT any of the dangerous effects of trying to exercise when you are hypoxic, which you almost certainly are if you have these breathing problems as a result of CP.
    My blood oxygen level went down to 80 when I was tested initially on a bike without the mask - anything below 97 usually makes people in hospitals start worrying.

    I was put on this regime while at the Lyme clinic, and my WONDERFUL doc here at home in Italy prescribed me an oxygen tank so I could carry on the same training at home. I gradually worked up to 30 minutes a day with oxygen, then started lowering the oxygen concentration adn then taking it off for the last twn minutes etc, till now I do it without the oxygen. This was all with the antibiotic reatment though, so I don't know if you could do the same thing without antibiotics.

    Having the home oxygen was wonderful because any time I got an attack of air hunger or that corset feeling it would only take ten minutes of oxygen to make that go away. It also often made headaches go away. You didn't mention these, but I would get headaches that felt somehow as if my head was being compressed from each side or somehow squashed. These turned out to be cause by hypoxia too as they would go away in minutes with oxygen adn not come back. I don't get them any more.

    Definitely don't go near steroid AT ALL they are so harmful, even at very low doses. I have been following all the advice in a book called "Adrenal fatigue" by James Wilson, a mix of lifestyle changes (small easy ones) and supplements which get your adrenal glad making its own cortisol and al lthe other adrenal hormones. My cortisol used to be so low they thought I had Addisons disease, now it is normal most of the time. (It has taken 6 months to heal like this).
    To be honest I am beginning to think that is even more important than the antibiotics. You need cortisol for your immune system to work properly and you also need all the other adrenal hormones, in the right proportion to each other, which will certainly not happen if you take artificial steroids.

    As far as other testing goes, my ENT doctor said you can get a nasal swab done which is fairly reliable but not exactly pleasant to have done. I haven't had it done myself and I guess it would only work if you have chronic sinusitis (which most people with CP do have). That's another thing I am so happy to have seen the back of on antibiotics! It went quite fast on azithromycin/zithromax (only took 2 months).

    I hope this info helps and also, sorry if I am getting way off the thread topic.
     
  4. SaraM

    SaraM Senior Member

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    My CFS started after a serious case of CP infection, and sinusitis. When I showed my lung xray images to a lung specialist , he refused to believe those images were mine. He said somebody with that sort of infection had no chance of survival. Trying a long term AB therapy has been on my mind for quite some time.
     
  5. AndrewB

    AndrewB Senior Member

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    My white blood cell counts have been overly high since i first fell ill with ME last year, i had four courses of antibiotics and i recovered by september.
    I fell ill again this year, and havent been able to get back to even a reduced rate of functioning health, ive had two chest infections in the time ive been
    ill, my GP would only give me a 10 day course this year, and i dont think its helped.
    Because im so fatigued, i cant cough properly, i literally dont seem to have that reflex anymore, its as if my lungs and breathing muscles havent got the energy to cough.
    With me being still so often, im sure this is making things worse.
    I tried to do some walking in the house, but this makes my breathing and fatigue worse to the point of collapse.
    My breathing problems went away after my first bout of ME last year, so it MUST be connected to this relapse.
    I have felt the 'air hunger' people describe, but that not all for me, i have to concentrate on taking shallow breaths, if i dont, i seem to stop breathing.
    Ive been told by doctors its impossible to stop breathing, but they havent been in my shoes, when its at its worst, if i didnt really concentrate on it, i would stop.
    So for me, the act of moving my chest is the problem, i cannot take deep breathes and i cannot blow air back out (i cant take lung capacity tests on the blow meter because i simply cannot blow out the way they ask me too, i just dont have the breath).
    However, most times, my blood oxygen level is fine, so they say my lung capacity is ok.
    This is so frustrating. I feel like im banging my head against a brick wall.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    I felt the same way when I had (undiagnosed) pneumonia and the doctor put me on levaquin anway "just in case". I think the doctor lost the x-ray while I was waiting an hour for the results, and he just wanted to get rid of me instead of doing another x-ray. A different doc diagnosed it two weeks later, when I switched clinics.

    I have trouble breathing sometimes still if I'm in the wrong position. I can only sleep on my left side, and leaning back a bit while sitting up is always bad. It doesn't feel like a lung thing now, the way it did when I had pneumonia and had to force myself to breathe sometimes. But maybe a different position will still be helpful.
     
  7. AndrewB

    AndrewB Senior Member

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    I have low grade fevers that come and go, they are worse when my fatigue is worse.
    But all my x-rays and scans show nothing, and the blood tests only show a slightly raised
    white blood cell count.
    For me, fatigue = Breathing Problems.
     
  8. mellster

    mellster Marco

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    Sorry to hear that Andrew, keep trying to tackle those problems - I think at least you may be on the right track. Athene, thanks for you replies, makes a lot of sense. I have had great improvement using NAC + guai and immune modulators, I can exercise fairly well now but I still get some chest/ribcage inflammation (without breathing problems though). I might hit up the pulmonologist again at some point and check lung function and I will have another CP/EBV test in December. Thanks again for the good info. cheers
     
  9. Athene

    Athene ihateticks.me

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    You all sound as if you have totally awful lung problems. You have my greatest sympathies.
    I suppose the only thing to do is try another specialist until you eventually find someone good?? My mother had to do that and after two years of useless little courses of antibiotics it turned out she had a huge cavity in her lung where an infection had literally eaten it away!!!! Horrendous. She needed 6 months of high dose antibiotics.
    Mellster, I'm very glad to hear you've been getting improvements and I hope you keep improving.
     
  10. springblossom

    springblossom

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    I too get the fever when I am feeling low (which seems to be constantly at the moment).

    As for the breathing, I suffer from a sudden onset of difficulty if I do even the smallest thing, like walking to the toilet. I struggle to get breath in, and I feel like I am choking. It is a very worrying thing, so you have my sympathy.
     
  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @mellster I am not sure if you are still active on PR but I found this thread very interesting re: breathing problems in ME/CFS. I was wondering if you are still nebulizing glutathione or if anyone else on PR is doing this. I thought I'd revive an old thread before starting a new one to gather data re: both nebulized and liposomal glutathione. I want to hear both good and bad experiences.

    Thanks!
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He hasn't been here since Jun 14, 2015, so you might want to contact him by PM rather than tagging.
     
  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Okay thanks Sushi! I am also hoping others might respond to this thread re: breathing problems and nebulized glutathione. Am hoping to gather some more data and info on it.
     
  14. JaimeS

    JaimeS Senior Member

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    I've had this since I was a child, only in one spot. I think it has to kick up when inflammation is kicking up, but I'll bet that it can be due to trying to expand the lungs beyond their capacity. It's associated with panic disorder, but I think that's because people who have panic disorder hyperventilate rather than due to a direct connection. I notice that if I get it, I'm about to have a bad breathing day or two.

    ...oh. KDM just diagnosed me with that.

    Despite this, Vitex agnus-castus helps me deal with the problem. It goes away almost entirely when I'm taking two 250-mg pills twice a day. It probably doesn't combat the C. pneumoniae, just works as a lung-specific anti-inflammatory by indirectly increasing progesterone. I have data on that, if anyone wants it.

    I've found probiotics that I can take without getting sick, and this is awesome. Unfortuntely, my breathing issues are markedly worse. Is this die-off of C. pneumoniae? If so, halle-freakin'-lujah. I'll just take Vitex like it's going out of style, and hopefully my issues will decrease over time. I'm about to start heavy-duty abx, but I'm not sure if it's supposed to be CP specific, or for the Tularemia that I also have.

    Life = bowlful of cherries ;)

    Seriously, kind of. I'm so happy to know where this comes from, and so happy to start getting treatment for my issues. I know some of it's going to be difficult, but that's okay with me if the outcome is good. :)

    -J
     
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  15. dannybex

    dannybex Senior Member

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    I did nebulized glutathione along with methyl-b12 injections back in 2003 after a very rough 2002. Within maybe 2 weeks I was probably back to 60-70% functionality. I continued with the glutathione for about a month or so, then was able to drop that and did the b12 shots for another 5 months or so.

    By June-July 2004 I started to get a little too hyped up and agitated -- the doc then prescribed thiamine injections and within maybe a week I was so relaxed and calm I thought I could quit the klonopin I was taking cold turkey. I did the shots for maybe another month, then stopped but was able to remain at 60-70% or so until I ran out of $$ towards the end of 2004 and panic set in. With no funds to continue the shots (or anything) I relapsed, filed for SSI, and the rest is history.

    Worst of all, thanks to all the stress and the resulting brain fog, I COMPLETELY forgot about both the glutathione and b12 shots until I found a receipt for them in late 2011. I was able to get another refill, but haven't been able to afford them since, and the last I heard, the price has skyrocketed in just three years.

    And I didn't find the receipt for the thiamine injections until last year. Sigh...

    Anyway, FWIW. :)
     
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  16. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Thank you @dannybex for sharing your story and that you had a positive experience with the nebulized glutathione. I appreciate the info.
     
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  17. mellster

    mellster Marco

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    @Gingergrrl

    Hey, I cannot make a recommendation for or against the nebulization as I did not do it long enough before improving back to fully normal within the roughly 5 years this whole ordeal lasted, but back then it seemed to help and I didn't notice any side-effects. I still take liposomal glutathione on days where I don't forget it ;), also cordyceps, graviola, ahcc and IP6. While my breathing problems back then were "diagnosed" as asthma it was a strange form of air-hunger and slightly suboptimal lung-function. It certainly wasn't asthma and I'm glad I never touched the prescribed inhaler. I also remember taking NAC 3x daily which helped improve it as well. The MAF314 probably helped most of all to resolve my condition as a whole. I plan on taking it as a regular supplement soon again if I can get my hands on it, but it looks like most sources of MAF314 have dried up amidst a bizarre sting and concerted effort by mainstream pharma/politics to suppress its research (shameful) and there's only one company left selling it.
     
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  18. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @mellster thank you for your reply,

    Were you ultimately diagnosed with ME/CFS or another condition(s)? Was shortness of breath your main issue? You said you returned to normal after five years so you suffered with something for a long time and was curious if you or your doctors every figured out what it was? Did you have MCAS or mold exposure?

    Did you ever fail a PFT/spirometry test which showed impaired breathing (like in my case?) They have ruled out asthma or any obstructive airway disease (in my case) and thus far it appears to be a restrictive airway disease but I need further testing which will hopefully happen in August. Also severe dysautonomia where not enough blood going to my lungs especially when I stand. I will be trying the nebulized gluatathione and liposomal glut, too, in future for lungs and mold detox.

    What is MAF314?
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    JaimeS and Gingergrrl like this.
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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