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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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    It wasn't the main issue, also it wasn't shortness of breath exactly, more like intense airhunger (my breathing was actually slowed down I believe). I was diagnosed with CFS (not ME), FM, PVFS and such but nobody really figured it out. Chances are good though that it was dormant and an infection (mono/EBV suspected) triggered it. I didn't have MCAS and don't know about mold, the bay area has quite a large variety of fungi and allergens in general, I had some food intolerances and chronic GI symptoms, but I don't believe those to be the root causes. I had mild POTS as well.

    I failed the spiro test barely, so they went with light asthma. I don't think I ever had an athlete's lung, but I am now running half marathons once in a while in around 2 hours. I do believe all my problems were due to some chronic infection/imbalance which likely wreaked havoc in the gut and then the rest of the body and impaired the immune system, it also likely infected the lymph system. I suspect bacteria at this point but don't have ultimate proof. I had extensive viral, and some bacterial and fungi tests. I had high IGG antibodies to EBV and mildly elevated CPN/MPN back then, otherwise nothing out of the ordinary.

    Interestingly I have seen yoghurt in the no-problem category for histamine disorders on some sites, so I am not sure. Also histamine content is so much depending on the food freshness, the sources and the process, so it is difficult to pin down. There was an injectable version of GCMAF though but I think it's not available anymore. I think you cannot do much wrong with the glutathione, so good luck with it. I have also been doing much better in general since embarking on a low-carb diet, not super strict but strict enough. I do biotech research and trade and I do believe that the evidence against sugar (and too many non-sugar carbs) is now overwhelming. I also fast intermittently (16 hours by skipping breakfast) and it helps enormously wrt reducing overall inflammatory symptoms. cheers
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @mellster

    Do you mean your breathing was slowed down like respiratory depression? It sounds different than my experience but was just curious.

    Okay thanks and this sounds different than my case as well.

    I failed it completely three times but they ruled out I do not have asthma or any obstructive disease (sorry if I already said that and can't remember where I typed what today!)

    Yogurt is fermented so is high histamine and forbidden on all the mast cell lists I have seen along with vinegar, yeast and other fermented foods.

    I hope so but it has a few ingredients in it that I worry about from an MCAS perspective but am going to give it a try next week in liposomal form and later in nebulized form.

    Thanks for all the info and glad you are doing so much better, that is awesome!
     
  3. JaimeS

    JaimeS Senior Member

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    Regarding the CP, a bit of Floridex helps with breathing issues, too - the iron takes care of it. Thanks for that, @Athene!

    -J
     
  4. harveythecat

    harveythecat

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    Hi,

    Just read this thread for the first time. I've had different breathing/chest problems since getting ME and have never known what is ME and what is a secondary infection (as I'm sure is pretty common.) I just read the comment about the 'corset' feeling, and that is exactly the way I used to describe how my chest felt! So this is probably a secondary infection? I've had those headaches as well, on either side of the head, like its in a vice, but never connected the two. A few weeks back I REALLY overexerted myself and then got a chest infection. Since then I've often had mornings where I wake up and have chest pain/feel short of breath for a while and now find it easier to breathe sleeping on my back.

    I want to go to my GP and try and find out what is going on, but I'm worried she'll think it's nothing (and as these symptoms come and go - maybe there won't be anything for her to find?)

    Should I go in and say I think it might be CP? (I thought it might be asthma before, but I'd never heard of CP).

    Thanks
     
  5. JaimeS

    JaimeS Senior Member

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    @harveythecat -

    I hope others know whether this is a common thing to test for - I'm not sure that it is, unless you have an acute infection. My observation has been that unless you have a raging, active, fever-inducing infection no one tests your blood for any kind of pathogen; and if they did find evidence it was there, they would say that it's probably just some antibodies floating around from a prior infection. The medical community as a whole seems to have trouble accepting the idea of low-grade, long-term infection.

    My advice is to try one of the OTC treatments suggested here and see if it helps, and meanwhile to consult a specialist who would actually check for this.

    Note: I'm informed by my previous experiences, like anyone, and I don't suppose it hurts to say that you've been having trouble breathing - though be sure to say it's on exertion or while lying down and be sure to say that you have never experienced a moment's anxiety, even when in the path of a speeding train. ;)

    -J
     
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  6. harveythecat

    harveythecat

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    Yeh that sounds about right. I might think about it if it gets worse again then, thanks!
     
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  7. slysaint

    slysaint Senior Member

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    There's a good article on the BMJ.com website about CFS/ME and chlamydia pneumoniae. It was something I looked into quite early on(about 13 years ago) . having read this thread I think I need to look at it again as I still get episodes. There is a lot more about it now ; the symptoms are apparently similar to Lyme disease. I did find one other bit of interesting info; that tryptophan promotes c.p so substances that increase tryptophan or serotonin such as 5htp or SSRI s should be avoided.
     
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  8. JaimeS

    JaimeS Senior Member

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    @slysaint - that's fascinating. If you locate the article, do post it here.

    -J
     
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  9. slysaint

    slysaint Senior Member

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  10. harveythecat

    harveythecat

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  11. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Breathing problems in ME can be due to multiple factors

    Aqquired: Infection (as discused in this thread)
    Aqquired: Allergy (check your IgE levels).
    Aqquired: Asthma and in worse case scenario COPD and IPF (fatal).
    Aqquired: Neurological including sensory dysfunction in which you lose sensation of a bodily part in episodes.
    Aqquired: Vascular and circulatory dysfunction affecting the heart and lungs blood flow (e.g. Autonomic Dysfunction).
    Aqquired: Metabolic (muscle weakness) from mitochondrial dysfunction making your diaphragm weak.

    The public aren't told this, it's up to severe PWME to experience and work it out for themselves as they
    get progressively more ill. What a dreadful state of affairs.

    GET worsens inflammation (naturally) in inflammatory disease, hence it's dangerous for PWME and will be banned, once the patients sue their respective governments for scientific fraud (CBT and GET to 'reduce' symptoms worsens ME by further immune activation and mitochondrial exhaustion - via inflammation and CNS activation).

    With regard to chlamydia pneumoniae:

    As ME is a non HIV-AIDS, it doesn't surprise me to hear from Euro expert on Lyme (D Armin Schwarzbacker) that his patients who come to him with 'CFS' have Cp infection almost always, this makes sense as Lyme like disease is now an epidemic and cP is a Lyme co infection.

    The urgency to better diagnose Lyme is why the EU is funding Hilysens (Lyme 'lab on a chip') for millions of Euro:
    http://www.hilysens.eu/ alongside Dr. Schwarzbach's Lyme research contributions.
     
  12. willg

    willg

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    I have had CFS for 8 years. 5 years ago my breathing became problematic and I was diagnosed with Chronic Hyperventilation, which causes a wide range of bizarre symptoms. I relearned how to breath correctly, but I still continue to have the sensation of a vice around my chest and "air hunger".
    I have had extensive tests done on my lungs and breathing, but nothing wrong has been found.
    I rarely get colds or respiratory infections since I stopped working 4 years ago as I am now mostly at home.
    I'm perplexed. Chest tightness and labored breathing are not commonly recognized CFS symptoms (are they?). Does anyone else with CFS fit a similar profile to what I've described? And what do you think - is it CFS related, or a separate disorder?
    And does anyone have any advice as to how to treat my respiratory problems?
     
  13. JaimeS

    JaimeS Senior Member

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    It might be CFS-related because many patients experience this symptom. You'll find lots of threads describing air hunger if you type that in quotation marks in our search box at the top of the page. (Usually those will be my posts because that's how I describe it; but if you scroll forward and back within the same thread, you'll see others' experiences as well.)

    However, it's certainly a minority symptom: a significant number of patients report experiencing it, but certainly not all of them. It might be an issue or disease that is more common with us? Dyspnea (shortness of breath) in general is listed in the CCC as being a potentially diagnostic symptom when it's after exertion. However, exertion doesn't seem to have an effect on my air hunger at all.

    I've got a few hypotheses as to where mine comes from, and none of them are something we see in all patients, so perhaps that's why. I've noticed that cutting out certain foods after allergy testing has mitigated the problem, and so does CoQ10 and Vitex. For acute episodes I up the Vitex and take deep breaths of Olbas. That's all my personal experience, and there is no guarantee those things will work for you.
     
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  14. ryan31337

    ryan31337 Senior Member

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    @willg, I have similar issues - my experience may be of little relevance to your situation, but you never know...

    I had pulmonary function tests & a visit with a respiratory physio on suspicion of chronic hyperventilation, off the back of a POTS diagnosis (its a common comorbidity so was investigated as a matter of course). At the time both investigations came back normal and the chronic hyperventilation diagnosis didn't stick, interestingly my breath holds were actually quite a lot better than average.

    A CPET did find 'hyperventilation', which in my case was actually from a very slow but deep breathing respiratory pattern - along with quite an impressive resting bradycardia in the 30bpms. What became apparent later was that this was happening during episodes of apparent reactive hypoglycemia, which were happening after nearly all meals. Once that was addressed, my breathing patterns and heart rate became far more normal and of course many other symptoms improved. I still have issues with increased drive to breathe on orthostasis (nothing like a tilt table test to ram that point home!), but it is manageable and I no longer become breathless at rest.

    Hope that helps,
    Ryan
     
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  15. JaimeS

    JaimeS Senior Member

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    I was just looking at my old notes from Mayo to send to a new doctor to get a CAT scan to double-check for EBV-related scarring of the lungs. (Yes, it's a thing; EBV can scar the lungs, and can cause portal hypertension due to liver or splenic damage.) I already know how high my IgE is, but I think it's important to prove that scarring or physical damage is not the problem before I go asking for something like anti-IgE therapy.

    Anyway -- the point is that I've got this too: slow, deep breathing, with a "marked" sinus arrhythmia. That is, a weirdly different heartbeat on inspiration versus expiration. I probably breathe slowly and deeply because taking a swift, deep breath makes me dizzy. I wish I were joking. When the doctor holds the stethoscope to my back and asks me to take a number of deep breaths, I feel pretty awful. Probably we're doing this because that deep, swift breath feels bad.

    @ryan31337 -- how did you address the reactive hypoglycemia? Did you change your diet, or did your doctor prescribe something? Are you now eating smaller meals?

    -J
     
  16. ryan31337

    ryan31337 Senior Member

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    Hi @JaimeS,
    I'm the same, exaggerated Respiratory Sinus Arrhythmia seems to be a thing for some POTSies. According to Vanderbilt its not indicative of POTS itself but some other related insult to vagal function. I find it useful sometimes, using a long slow exhalation to decrease my run-away heart rate when I'm upright.

    If you do a hyperventilation screen you'll probably find, as I was, to be on very low edge of normal for etCO2 at rest. A few deep breaths pushes us into hypocapnia and we tend to stay there for a prolonged time. Whether this is dysautonomia influencing our breathing drive and/or some metabolic issue at play I'm not sure anyone can say.

    Ketogenic diet, smaller portion size & avoiding fluids at meal times. A local, well regarded neurogastroenterologist hangs these issues on Rapid Gastric Emptying (dumping syndrome) in POTS patients. I have to say with all the associated GI problems I used to get too, it fits very well. The interventions for dumping syndrome have worked for me - switching to high fat also apparently slows emptying. I will get less significant but still noticeable postprandial issues on bad days, so perhaps blood flow to gut plays a part too.
    http://www.potsuk.org/UserFiles/File/Prof_Q_Aziz_Gut_and_PoTS.pdf

    I am horribly histamine intolerant and massively restricting food types & preparation methods to reduce histamine intake has also helped, there's definitely a link there, vasoactive amines...

    I am aware of a poor lady in an MCAS group that had very significant postprandial problems despite following dietary intervention, she does a lot better on octreotide so there is hope if I end up that way!
     
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  17. JaimeS

    JaimeS Senior Member

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  18. Gingergrrl

    Gingergrrl Senior Member

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    I have literally never heard of this term before but am now wondering based on the severity of my POTS if I have this (or had it in the past). I'm going to Google this further.

    Edited: Am back from Google and actually do not think that I have this. I have had a few irregularities on prior EKG's but from what I remember, this was not one of them. Very interesting though b/c I failed every breathing test and was not able to inhale a deep breath due to muscle weakness (but I could exhale fairly normally).
     
    Last edited: Oct 2, 2017
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  19. willg

    willg

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  20. ryan31337

    ryan31337 Senior Member

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    Hi @willg,

    Yes, I had a hyperventilation screen when I was at my worst and it showed a low-normal baseline CO2 and a delay in return to normocapnia after forced hyperventilation. Immediately prior to the screen I had walked from the train station to the hospital, which was significant as I was exceeding my anaerobic threshold in doing so (confirmed by CPET). I had also JUST completed spirometry tests too, so naturally I was recovering from hyperventilating before even starting the screen. It was rather unscientific if you ask me, a bit like asking an athlete to take a breathing test at the finish line of a race and expecting a normal result...

    Anyway, I do agree hyperventilation can cause a lot of problems and nasty symptoms, but I find it a rather unhelpful and harmful label for some of us. As shown in the NHS HVS handout you linked to, the standard medical consensus blames anxiety and tachypnoea in the first instance. In my case, and i'm sure many others here with co-morbid OI/POTS (~50% of CFS patients?), hypocapnia is not caused by anxiety and tachypnoea. Instead it is caused by autonomic dysfunction, cerebral hypoperfusion and the resulting hyperpnea upon orthostasis. Its no wonder POTS is nearly always first considered to be 'just anxiety'.

    From my own experience I think there is a metabolic mechanism at play too. A ketogenic diet did wonders for me and I wonder if in part that was due to its effects in reducing my Respiratory Exchange Ratio (VCO2\O2). A reduced RER at rest and during sub-maximal workloads is known to occur during ketosis due to increased lipid metabolism. I only know enough to make wild guesses, but do wonder if by having a lower RER (reduced CO2 to O2 consumption) it makes it harder for you to become hypocapnic and start the whole runaway train rolling in the first place...

    Thankfully I saw a sensible respiratory physio who realised my breath holds (another good indicator of HVS) were the opposite of what is normally seen in HVS, so I escaped that label and got some advice and drugs that got closer to the root of the problem. Here's a good paper on how its actually the cerebral hypoperfusion that kicks off 'hyperventilation' in POTS, and not the other way around: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016155/

    Regardless of the cause, I'm glad we're both doing better!

    Cheers,
    Ryan
     
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