Wellness

[LTT1]

@BirkiLady@DeniseColo@software@teainlondon

I won’t let you forget where this discussion is!

More: back in 1989, when I was tested, my regular allergist/immunologist told me that I would not be able to afford infusions unless I had an oil well in my yard.

Then, fast forward a few years...an Immunologist over in Dallas told me that in “cases like mine” infusions rarely had been shown to help. “Let’s go check the sinuses first.”

That is what really helped in my case. 

It is just hard for me to remember that there will be high-energy days and some very low energy (no energy) days.😘

Be kind to yourselves. And help “pad” the days with smiles if you know somebody who has this kind of stuff.

[DeniseColo]

@I am still oxox 

My primary care physician at that time was also an Infectious Disease/Travel Medicine specialist so she is the one who diagnosed me and coordinated my treatment.

I did go see a doctor who specialized in both Allergies and Immunology a few times.  Ironically,  I first saw the A/I doctor for my chronic sinus infections about 18 months prior to ending up in ICU.  In addition to testing for allergies, she started the vaccine  "challenge" (like you had done with the pneumonia vaccine).  Unfortunately, I didn't go back to see if I ever developed antibodies.  My parents were both critically ill and "allergy testing" didn't seem that important at the time.

So, even though it was my PCP/Infectious Disease Specialist who ultimately diagnosed me, the Allergy/Immunology Dr was the first to suspect the CVID.  I think the A/I Dr would have also done a fine job managing my treatment. 

Do you know if your allergist is also an immunologist?  I have always thought that all allergists were also immunologists but I could be wrong about that.  If you are not totally confident in and comfortable with your allergist, perhaps you could get a second opinion from another specialist.

[DeniseColo]

@LTT1 

Thanks for sharing your experience with CVID.  I've only talked to one person that had to have a short course of IgG infusions but I don't know recall what her diagnosis was. 

It sounds like you have never needed to have infusions, that is so interesting to hear. I just assumed everyone with CVID needed to have them.  Wonderful to hear that your surgeries were so beneficial.  Chronic sinus infections are miserable! 

Reading your story reminded me how important it was that my allergy doctor finally figured out that I also have allergies.  She is the one who started me on an antihistamine which actually played a huge part in stopping the chronic sinus infections.

Do you know if insurance covered the infusions back in the 80's and 90's?  Luckily my insurance covered the majority of mine in 2004-06.  When I lost my insurance I just assumed I could pay cash for it...Unfortunately I had no oil well in my yard.

Your advice to "Be kind to yourself" is so important for everyone dealing with health issues! 

[BirkiLady]

@LTT1 @I am still oxox @DeniseColo @software @teainlondon  Seems like more and more specialists are studying immunology as part of their specialties. Our society has changed drastically in the past 50 years. Some of our health problems may be related to our lifestyles and the chemicals we are surrounded with (i.e. carpet, flooring, clothing, food additives, furniture, plastics/synthics, etc.) in daily living.

Quick question on allergies. Has anyone else noticed their fall allergies are early this year? Mine usually begin August 15th like clock-work. This year, allergies hit last week with a vengence. Fortunately I'm already seeing my physician for other issues and he provided the RX needed. This has been such a strange year weather-wise!   

[I am still oxox]

@BirkiLady

My allegies are in check this year so far but I am taking a lot of meds to prevent allergy issues