Log In or Register to Join The Conversation!
Viewing 7 reply threads
  • Author
    Posts
    • #15691
      Leah Leilani
      Keymaster

      Do you have Asthma, COPD, another respiratory disease or weak lung function? Have you considered getting a pneumonia vaccination?

      I have what is called Viral Induced Asthma which means that my asthma is induced by viral infections. Although the vaccine does not protect against all Pneumonia causing bacteria, I thought it would be a good idea to get a Pneumonia shot to minimized my chance of contracting pneumonia if I happen to be infected by the Coronavirus.

    • #15699

      I have a prescription to get the vaccine but I haven’t done it yet! Thanks for the reminder!

    • #15704
      Leah Leilani
      Keymaster

      Lol, my pleasure!

    • #15714
      Phil rosenstein
      Participant

      I don’t Want to discourage anyone from getting the pneumonia vaccine, but I will share my experience. I had pneumonia 5 times in 7 years roughly ten years ago. Each time, I asked the doctors why I got it and they said it was just bad luck. Each time they gave me the vaccine. Until I finally had a GP test my immunoglobulin levels (IgG specifically). Long story short I have IgG deficiency.

      This is tested for by measuring your pneumonia titers in your blood and then giving you the vaccine. Then three weeks later they measure your titer levels again. They should all be much higher since you just had the vaccine given to you. Mine were all the same or lower – and way out of range for normal results. So, basically IgG deficiency means your body “forgets” how to fight off a certain infection the next time you encounter it.

      It turns out IgG deficiency is a well known feature of myotonic dystrophy. So that is why the vaccine never helped me fight pneumonia off the next time I encountered it.

      Now, having said all that, I do still get the flu shot every year and next week I will be getting the shingles vaccine. I do not know if the flu and shingles are any different than the pneumonia vaccine. But, they are cheap and easy and painless and my doctor basically said “It couldn’t hurt and it may help”.

    • #15717
      Leah Leilani
      Keymaster

      I’m so sorry you went through this Phil. I never knew this about myotonic dystrophy. I do know however that the vaccine does not protect against all pneumonia causing bacteria. The thing with vaccines is there’s never a guarantee that you’ll be 100% protected from whatever virus or bacteria. I once got pertussis after being immunized. That being said, I think it doesn’t hurt to possibly lower the chances

    • #15724
      Phil rosenstein
      Participant

      In hindsight, the IgG deficiency and resulting repeated bouts of pneumonia was the first clue I Had DM2.  It took another ten years for the fatigue, muscle weakness and muscle pain to arrive – still no myotonia.

      In January 2016 my father passed away. The day before he died they took a blood sample. A month later the results come back and find out he had DM2. They said his children had a 50/50 chance and so they should probably be tested too. I looked online at the symptoms and determined that I had none, so I figured I’d save the money and not get tested. In January 2017, pretty much out of nowhere, I checked online again and had all the symptoms except myotonia. I don’t remember the website I went to, but when I saw IgG deficiency listed as one of the top 5 symptoms I knew I had to have it too, since IgG deficiency is so rare.

    • #15752
      Leah Leilani
      Keymaster

      Phil, are you an only child? If not, did your siblings turn down the diagnostic testing as well? My brother hasn’t had any symptoms of my type of MD (mitochondrial myopathy) so he hasn’t been tested. For most of my mom’s life she was a carrier up until a couple years ago when she began developing symptoms.

    • #15756
      Phil rosenstein
      Participant

      I have one brother who is three years younger than I am. He has not been tested. He does not want to be tested. He does not want to know.

      In his favor, he has not had any symptoms yet. But, he is now approaching the age I was when I first diagnosed. So he is not out of the woods yet. But, frankly, if he does start having symptoms now, there really isn’t much point in getting tested. Because we will all know what is causing them. My father had two cousins with DM2, two uncles with it, his father and finally myself. At this point it would be fairly easy to figure out what would be causing his symptoms.

      So, no he has not been tested. He does not want to be tested. But, honestly, he probably does not need to be tested.

Viewing 7 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account