Author Topic: CVID and testing seronegative for autoimmune disease  (Read 2663 times)

SjoDry

  • Hero Member
  • *****
  • Posts: 942
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
CVID and testing seronegative for autoimmune disease
« on: May 23, 2016, 11:12:50 AM »
Sjoggie-mates,

I just mentioned in another post that I attended a primary immune disease day long program in Cleveland on Saturday. There were a panel of excellent docs from the Cleveland Clinic. I just had to ask them: If you have a patient with CVID and they are seronegative for an AI condition..is it because of the CVID that they cannot produce the antibodies used to typically diagnose the AI condition?

They answered that it can go either way. Some people can produce them, others cannot. It can depend on the immunodeficiency that the patient has. Nice to hear that confirmation. Also, my Immunologist told me that he thinks I developed my autoimmune issues from my CVID. But I learned at this presentation that patients can also have autoimmune conditions first & then develop the immune deficiency after the autoimmune condition(s). I did not know that. I thought it only went one way.

BTW, they all said...it doesn't matter what the bloodwork says...You must look at what is going on with the patient and treat them accordingly!

SjoDry
« Last Edit: May 23, 2016, 11:14:31 AM by SjoDry »
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Kathy57

  • Hero Member
  • *****
  • Posts: 769
  • Primum non nocere - "First do no Harm"
Re: CVID and testing seronegative for autoimmune disease
« Reply #1 on: May 23, 2016, 03:12:48 PM »
Sjodry,

Very informative and interesting.  Thanks for sharing.

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

Tharrell

  • Hero Member
  • *****
  • Posts: 808
  • There has to be humor in this somewhere!
Re: CVID and testing seronegative for autoimmune disease
« Reply #2 on: May 23, 2016, 03:35:12 PM »
I did not know and only found out after doing some research, but the Dilantin I take for Isaac's syndrome can also cause immune deficiency. So apparently it can be medication induced as well.
I just wished my rheumatologist would take it a bit more serious and test now rather then waiting till I do my next blood testing either August or December! Urgh!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

Tharrell

  • Hero Member
  • *****
  • Posts: 808
  • There has to be humor in this somewhere!
Re: CVID and testing seronegative for autoimmune disease
« Reply #3 on: July 24, 2019, 03:19:30 PM »
Well what do you know. I came looking for information on cvid and saw my post here from 2016! My rheumatologist never tested me! She waved me off saying of course you are immuno suppressed, because of your medication. I felt she was purposely misinterpreting me.
Fast forward a couple of weeks ago.
My neurologist tested me and I came back positive for cvid! Specifically low IGG and IGA. I’m already approved to get IVIG, but thanks to the national shortage am on the waiting list at Baylor.
That is the second thing my rheumy failed to catch. The first one was distal renal tubular acidosis. I caught that one as well a month ago. I had my pcp refer me to a nephrologist who diagnosed it.
Next time I see my rheumatologist, we are going to have a serious conversation!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13559
Re: CVID and testing seronegative for autoimmune disease
« Reply #4 on: July 24, 2019, 03:58:25 PM »
Amen!!! Now to just get the doctors of the world to catch onto some of this info. If you have an immune deficiency my immunologist says that you can have an autoimmune deficiency..... It is sort of like What came first the chicken or the egg??

It doesn't make any difference....then throw in a bunch of allergies and what have you got. A whole room full of autoimmune patients who have all aspects of this. The blood and its components are a wonderful thing.

When I got diagnosed with Myasthenia gravis and Hashimotos plus low IgG levels and then severely low T-cells I ask doc where the low t cells came from and he said I really don't know and it doesn't make any difference cause it needs to be treated. The IVIG used for my myasthenia also was treatment for low t-cells.

Don't you sometimes think that some of the doctors try to make such a big deal out of it that they miss the boat entirely. You had a good day. Thanks for the info. Irish

Carolina

  • Hero Member
  • *****
  • Posts: 5831
  • —if it ain't one thing, it's another." Roseanne R.
Re: CVID and testing seronegative for autoimmune disease
« Reply #5 on: July 25, 2019, 05:24:20 AM »
Hi CVID folks,

I've probably said this before but it bears repeating:

I have CVID.

I have IgE at the very bottom of the normal scale, 5 when the bottom is 4.  HIGH IgE is associated with allergies.  Therefore, I don't have true allergies.

It turns out that my Immune System, is not only deficient, it also mounts attacks on the organs and systems of my body not with autoantibodies but probably with cytokines.

The BOTTOM LINE: I have the same damage that people with severe autoimmune conditions have, and NO AUTOATIBODIES.

I started with the symptoms of Sjogren's in 1992, and the conditions snowballed until I wound up with severe nerve damage in all of my body. But I never tested positive with any autoimmune condition.  So I treated the symptoms.

But it wasn't until 2013 that my then new Immunologist made the call: CVID and attacks on my organs and systems by my own immune system.

I NEVER tested positive for any AI.  And once I tested positive for at least 50 allergies!

We use the tests we have, not the tests we need.  Keep on persisting and find the right doctor for you.

Regards, Elaine
Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.