The way back - improved control but not cured

By only me

1 min read

My decline was slow - perhaps over 16 years starting several years after I retired. By that time I was being treated for an unnamed condition - still don't know which within the overall collective. After years of frequent and unpleasant exacerbations and the occasional stay in hospital, I decided to treat myself.

Assuming that an exacerbation is nothing but an infection I started with the further assumption that the body has the means to fight any infection. So the logical thing was to strengthen the immune system but not using doctors who appear conditioned to not approve. That was September 2019; following an internet search I use five common and cheap non-prescribed products from my local supermarket on top of prescribed medicines and have kept the exacerbations at bay. I am not cured - only better controlled. Peak flow readings have moved from mid 200s/low 300s to clear 500s and sometimes as high as mid 700's. On top of that little drink, I use the gym five times a week and can even run a little.

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Leon Lebowitz, RRT Member
Hi <inline-mention username="only me" user-id="4179719"/>, and thanks for your post. We appreciate you sharing how you have managed this condition evidently, with great success if the peak flows are an indication. You never mentioned if you ever were actually diagnosed with COPD or, your illness remains something more vague, an unnamed condition, as you referred to it. I will say that, generally speaking, peak flow rates do not tend to improve for patients diagnosed with COPD. It's good to hear that you have improved and are exercising on a regular basis. Staying active can be so valuable for so many medical conditions. Wishing you well, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
only me Member
Thanks for your comment. I suppose the first diagnosis I had was the referral to a COPD course which must have been 10 years after the first prescription. I had a three or four year period of regular scans of a never diagnosed big shadow at the base of my left lung but was discharged for that as there was no change. After many many scans I think it was less than 3 years ago that the consultant found a spot of emphysema in a different place - the first real diagnosis. I put the improvement down to the daily drink of old fashioned "cures" - honey, apple cider vinegar, lemon juice and cinnamon which, it was claimed, strengthens the body's resistance to infection and also a (even with my background) heavy daily exercise regime.
1. Leon Lebowitz, RRT Member
 <inline-mention username="only me" user-id="4179719"/> Hi again, only me, and thanks for your reply and further explanation. I am glad to hear the old fashioned 'cures' you are using seem to be helping you. It's hard to manage a condition that has not really been definitively diagnosed by a qualified capable physician. The 'spot' of emphysema, without further explanation, assessment and treatment by the consultant still leaves the patient left hanging. My heart goes out to you. Would it be possible for you to see a qualified, capable, physician who is able to provide a proper evaluation, take a medical history and provide a physical, perform the requisite diagnostic studies and then provide a definitive diagnosis with treatment plan and medication regimen? What do you think? Or, are you just as comfortable following along on you present course. All the best, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
only me Member
I suspect, Leon, that it is a case more of maintaining "state secrets". Certainly I was and am far far better than most. From what I read COPD is a cover for several conditions having similar symptoms and treatment, emphysema being one of several so ....I have been seeing consultants sometimes, having scans and (prior to the current pandemic,) seeing nurses at regular intervals. As to the emphysema (?sp) the consultant's tone was one of surprise though in my presence he didn't check previous scans to see if it had been missed. That said, my last lung test showed (from memory,) 40% so what further treatment is appropriate or available? From my reading it is not bad enough to warrant more extreme action. As for the drug regime, watching the COPD UK group I seem to be on a fairly normal diet of them plus an antihistamine plus a statin, both of which seem justified by tests. The COPD drugs were, in the earlier days, changed from time to time as I found certain ones ineffectual (which I feel normal). Things change - I was on salbutamol as a reliever but for many years nothing happened - now I very occasionally us it effectively. Interestingly I used to work with professional paramedics as a hobby and heard from them the difference between what I use and what they use - very educational but not for public consumption. Starting on the old fashioned cures made such a huge difference though it took a little time to really kick in; in fact I take only 50% of the original suggested regime so if I were to take more .....? They didn't refer to the potential side effects of excess (who ever admits that eating too much, for example, onion is poisonous!) so I am just being ultra cautious.
1. Leon Lebowitz, RRT Member
 <inline-mention username="only me" user-id="4179719"/> Hi again, only me, and thanks for this latest reply and further explanation. It sounds (to me), like you have yourself, the condition and the treatment, such as it is, analyzed perfectly for yourself. If what you are doing is working so well for you, you may want to continue. Of course, should you need medical intervention at some point or, just to check in on a regular basis, you can always do that as well. Warm regards, Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
only me Member
 One common problem with COPD is coughing up icky phlegm. Yes, there are prescribable drugs when/if you can see a doctor who knows about them but I was just reading the experiences of patients who have their own remedies. They include Mullein leaf (and a tea from them), pineapple juice, Fishermans Friend and other methods. (I have not tried any of those). There exist innumerable long technical texts but it is the two liners by users which are easiest to understand and are frequently more available.
Jackie English Moderator & Contributor
<inline-mention username="only me" user-id="4179719"/> , Thank you for sharing your story! I'm so happy that you found something to help with your exacerbations and that you are keeping active five times a week, that's amazing! Please keep us updated. Best, Jackie (moderator)