British Lung Foundation

When a GP tells a patient: "Not To Fixate On Your Health" = This Happens

Earlier this year I was diagnosed with Severe Pulmonary Fibrosis and during all the many tests Borrelia Burgdorferi (Lyme Disease) gave a 'positive' result which along with the above and my other unhealthy problems rather rocks the original diagnosis of M.E.14years ago somewhat off kilter although it has to be said autoimmune illnesses can mimic one another as far as symptoms go. But lung disease? I hadn't even considered this and I'm still trying to absorb this diagnosis.

I had thought for a long time about the probability of my having other eligible diseases especially since a tick bite during my travels in Cape Cod in 2001 (an area prevalent for deer ticks) and over the years I had been bleating to any GP who'd listen (or not) about my evolving breathlessness and how it affected me - but lung disease??

So - 14years has since elapsed with at least two bleeping red lights in the form of an X-ray (2002) and CTscan (2007) of my chest the latter showing the obvious signs of 'lungs in trouble' - however I can't gnash my teeth on the obvious glaring oversight of at least 2007's picture of my lungs which show the damage already established but instead draw comfort from the fact that I'm now under the care of a Pulmonary Care Team at Papworth Hospital and feel hopeful that my battered lungs are now going to be 'cared for' at the very least instead of 'cast aside'

In my case I have Familial Pulmonary Fibrosis and recently I was on a course of nintedanib having to come of it several weeks later through the side effects of daily nausea and weekly vomiting. I'm due to go back to Papworth this week to talk about restarting this medication albeit on a possible lower dose?

What's A Girl To Do???

3 Replies

How did you find nintedanib


Nastee side effects Jeff

1 like

Had few drugs like that myself.

Think ya right about lower dose tho

Apost to be wonder drug.

Surprised me you got dx of Lyme Disease think ya first on blf site.


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