topic Re: CVID in Wellness

CVID

I am still oxox — Wed, 01 Aug 2018 13:02:57 GMT

Common Immune Variable Deficiency

It has been determined after months of blood work and pneumonia shots that my body does not develop the proper immunities. I am looking at monthly Imunogamagobulian infusions for the remained of my life.

If I do not the outlook might be bad

Has anyone been down this road

Re: CVID

teainlondon — Wed, 01 Aug 2018 13:29:42 GMT

I have a dear friend who has this. She has the infusions. However, she goes to the gym and does mild exercises and does pretty much what she wants to. She is tired often, but she takes care of herelf.

I had never heard of this until she was diagnosed. I hope you do well with your treatments.

tea

Re: CVID

BirkiLady — Wed, 01 Aug 2018 15:32:37 GMT

Have you found an excellent specialist? Many of us on these Forums have compromised immune systems and with appropriate care (and time) are doing all right. You will never return to a life of energy, but you will learn to live with your health issues. Give your body time to adjust to the infusions. It's a lengthy process before results are noticed in many (i.e. 6-12 months). It's a relief to know what the problem is and to begin a medical plan. Keeping you in my thoughts as you begin this new journey. I've found daily walks also are helpful in keeping my energy levels up. Later, I added swimming. This year, ballet lessons were added . . . but I'm not very graceful and balance is iffy! Blessings.

Re: CVID

software — Wed, 01 Aug 2018 16:26:50 GMT

I'm sorry you are not well but be glad there is treatment.

I have a friend who probably could benefit from treatment but her doctor, in a small town, tells her "it is what it is, just live with it" Dr treats her for the various symptoms but no infusions. But she likes being a victim.

I hope the treatments work out for you.

There may be a support group you can connect with IRL or online.

Re: CVID

DeniseColo — Sun, 05 Aug 2018 10:04:41 GMT

@I am still oxox

I was diagnosed with CVID back in 2004 after developing epiglotitis. Prior to that, I was always getting colds and sinus infections. Did the IgG infusions for about 2 years. Stopped them only because I lost my insurance.

I never felt that great while doing the infusions but I had lots of other stuff (health & personal) going on at the time so it's hard to say that the extreme fatigue was solely due to the IgG. I will say it definitely stopped me from all the infections I was getting at the time. We tried several different infusion schedules, finally settled on every 3 weeks to achieve the best bloodwork. The very first infusion was done at the hospital just in case I had a reaction. After that, they were done at my house by a specialty infusion home health nurse.

I'm not sure what my IgG levels are now so I just assume that I don't develop antibodies and am careful about exposure to people who are sick, wash my hands often, etc. Have only had a few minor colds in the last 5 years. If I spent a lot of time around more people, especially young children or was getting infections, I would push my doctor to test me again. And I would definitely do the infusions again, even though I didn't really like them, if I felt it was necessary. Better than being critically ill again!

If you have any questions, let me know. I remember how unsettling it was when I first got the CVID diagnosis, especially after reading more about it. Maybe my experience isn't common (and I certainly wouldn't recommend just stopping tx like I did) but I did want to share it with you.

Re: CVID

I am still oxox — Sun, 05 Aug 2018 13:19:40 GMT

@DeniseColo

Thank you did you see an immunologist or just an allergist, all the testing and the vaccines were done by my allergist.

My brother keeps saying go see an immunologist

Any more insight would be great thanks much

Re: CVID

LTT1 — Sun, 05 Aug 2018 15:10:57 GMT

@DeniseColo @software @BirkiLady @teainlondon

I have CVID. It was diagnosed a long time ago...about late 80’s.

My allergist ran a “panel” starting with a “challenge” of pneumonia vaccine. Apparently my levels were quite low in two IGG subclasses.

I was plagued with sinus infections chronic.

A visit with an immunologist netted two more sinus surgeries (instead of infusions).

For years I was just very hard on myself and lacked energy. Teaching probably drained my immune system by being exposed to many youth all of the time.

By dragging myself around, I got my job done with little energy left over for family and activities.

However, now being retired allows for lots of rest and I do mean rest. Stress results in negatives. I limit my “public” contact, too.

Re: CVID

BirkiLady — Sun, 05 Aug 2018 17:24:32 GMT

@LTT1Don't want to sabbotage this CIVD thread, but just want you to know my health has taken a turn for the worse. Have been in for lots of testing (completely unrelated to current health issues). Have been on antibotics and another med for 10 days. Total exhaustion, among other things. Tuesday more testing at hospital. So much for my "feeling better during warm weather!"

Re: CVID

LTT1 — Sun, 05 Aug 2018 20:16:34 GMT

@BirkiLady

I am very sorry to hear this.

I had always counted on dry summer weather and resting as my “well time” too. But CVID can certainly have other plans!

Please report back because I’d like to know how it is going for you! Will try to catch up with you elsewhere, too, but that one may/may not happen!😉

Re: CVID

BirkiLady — Mon, 06 Aug 2018 05:21:10 GMT

@LTT1 Thanks for your kind words. Glad we've met! Continue to rest and take care of yourself. Sometimes it all we are able to do. <sigh>

Not particularly comfortable sharing much publicly; especialy here, but will share a bit elsewhere later this week. I'm really a very private person. Hopefully, I remember how to access it!

Re: CVID

LTT1 — Mon, 06 Aug 2018 08:32:47 GMT

@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.

Re: CVID

DeniseColo — Mon, 06 Aug 2018 09:53:03 GMT

@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.

Re: CVID

DeniseColo — Mon, 06 Aug 2018 10:54:56 GMT

@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!

Re: CVID

BirkiLady — Mon, 06 Aug 2018 16:18:09 GMT

@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!

Re: CVID

I am still oxox — Mon, 06 Aug 2018 16:26:22 GMT

@BirkiLady

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