Gamma globulin and further test results

madisongrrl · 01-15-2017, 12:23 PM

The immunologist will do what is called a vaccine challenge. They give you a pneumococcal vaccine (sometimes a few other ones as well) and take bloodwork to see if your body is mounting an appropriate immune response. Many insurance companies will not approve IVIG without the vaccine challenge, but it depends on the insurance company.

madisongrrl · 01-15-2017, 12:30 PM

http://primaryimmune.org/about-prima...ss-deficiency/

Sophie0513 · 01-15-2017, 04:03 PM

I appreciate that you share your personal experiences to help me understand my current situation!!! I am sorry to read that you are now experiencing seizures!!! I hope that the doctor you will be seeing will be able to help you with this!!! I am trying to be proactive with my treatment and honestly if it wasn't for the guidance that I have received from some of the people here I honestly would be totally lost!!!! Thank you again Elaine

Quote:

Originally Posted by ElaineD

I see a clinical immunologist. She teaches, does research in immunology and see patients, preferably those with the conditions related to her research. She is connected with Duke University Medical Center.

If you are having any autoimmune/immune related events, you are experiencing inflammation. Inflammation causes: profound fatigue, pain and depression.

If you have SFN you are living in a cage of pain in your own skin.

There are medications for pain, for depression (Cymbalta is on label for both), unfortunately nothing really good for fatigue, unless you are put on one of the drugs to suppress your immune system (Plaquenil, methotrexate, one of the newer biologicals).

I have an Immune Deficiency which is treated with IVIG every four weeks.
Before I started infusions of IgG , My IgG was 328 (scale:588-1573) my IgA was 106 (46-287) IgM 18 (57-237). My IgG subclasses were all very low.

My IgA is normal, so I don't have problems with my gut most of the time.

It can be very difficult living with Immune/Autoimmune Disorders. I spent years and years in misery, as one system after another was attacked. I sought out the best possible doctors and we even relocated to this area because there are two medical centers within 20 miles of our house.

I am currently experiencing seizures, probably as a result of my Immune System attacking my nerves. So I will be seeing an epileptologist on January 30.

The key to surviving these experiences is finding others to share with, knowing that it's not your fault and you aren't crazy, finding a good medical team to support you, advocating for yourself strongly, and finding the medical and non medical treatments to alleviate your pain and suffering at the very least.

Keep us posted on your progress Sophie.

Hugs, Elaine D

Sophie0513 · 01-15-2017, 04:15 PM

I have a f/u appt with the immunologist this Wednesday. Initially when I saw her, she didn't think there was any problem but agreed to do the further testing. She said she would call me, however when her office called to schedule a f/u, I now think she might be see there is something off. I will talk to her about further testing or a possible need to see a rheumatologist.
I will learn the biopsy results on Jan 26. The neurologist is nearly certain that I have SFN and with my symptoms, I believe he is right.
ENbloc, I don't think I have an autoimmune type symptoms..I'm not even sure what they might be. My energy levels are good..I just have this horrific type pain..burning skin sensitivity..I am trying to advocate for myself...and the direction that I have comes from you and the others who have taken their time to guide me. Honestly, I would be lost without It! thank you again Enbloc!!!!

Quote:

Originally Posted by en bloc

As others have commented, your IgG and IgM are low. I'm not sure why the immunologist that ran the tests hasn't followed up with you about the next step...whether he thinks further testing for CVID is warranted (subclasses, and vaccine tests) or if he thinks you should see a rheumatologist at this point to get his/her input about autoimmune disease (at least 25% of those with AI disease are also immune deficient).

Someone needs to step up tot he plate for you and provide some direction. I wold contact the immunologist and get his opinion and if you have current autoimmune type symptoms, then see a rheumatologist (can't hurt).

Do you know the results of your skin biopsy?

Sophie0513 · 01-15-2017, 04:20 PM

I will do this. i have had a long history of sinus infections. the last sinus infection I had was last September which did not clear up until February. I lost my sense of smell for months...I usually get them starting in October, however since I Have not been at work since October and home much of the time I have not had any problems...Thank you again..

Quote:

Originally Posted by kiwi33

Sophie, adding to what en bloc wrote:

CVID is an acronym for Common Variable Immune Deficiency. It is a somewhat confusing label; it is not common, affecting about 1 person in 25000.

The usual presenting features of CVID are recurrent infections involving the ears, nasal sinuses, bronchi and lungs.

This is something that it might be worth talking about with your GP and a clinical immunologist.

Sophie0513 · 01-15-2017, 04:23 PM

I am learning to push!!! I have a hx of Lyme Disease.. I was symptomatic for almost a year until I was finally dx'd. I was on abx for 19 mos until I went into remission., I hope you are improving as LD is a tough one if you are not dx'd early

Quote:

Originally Posted by madisongrrl

Don't be afraid to push on these doctors a little bit and get the testing you need that could lead to new treatment options.

I just had my LLMDs order the whole immunoglobulin profile through LabCorp, since I basically get all testing for free now because of my job. It's a long shot and I wish I would have done this when I was at the worst phase of my illness. If my tests come back low, then they are going to send me to an immunologist that they recommend who can do the vaccine challenge. Again, it's pretty much a long shot.

Sophie0513 · 01-16-2017, 07:43 PM

ENbloc
I just looked up the common symptoms of autoimmune diseases so now I have a better understanding, however I still don't believe that is my issue(although not sure). Both you and Kiwi suggested further testing with a clinical immunologist, however I might have to find one in NY or PA. I will talk to the immunologist who I see this Wednesday.
In order to qualify for IVIG(even if my medical plan would pay for it) would I have to have both CVID and an autoimmune disease?

Quote:

Originally Posted by en bloc

As others have commented, your IgG and IgM are low. I'm not sure why the immunologist that ran the tests hasn't followed up with you about the next step...whether he thinks further testing for CVID is warranted (subclasses, and vaccine tests) or if he thinks you should see a rheumatologist at this point to get his/her input about autoimmune disease (at least 25% of those with AI disease are also immune deficient).

Someone needs to step up tot he plate for you and provide some direction. I wold contact the immunologist and get his opinion and if you have current autoimmune type symptoms, then see a rheumatologist (can't hurt).

Do you know the results of your skin biopsy?

madisongrrl · 01-16-2017, 09:21 PM

Quote:

Originally Posted by Sophie0513

In order to qualify for IVIG(even if my medical plan would pay for it) would I have to have both CVID and an autoimmune disease?

CVID will get you qualified alone.

en bloc · 01-16-2017, 09:30 PM

Just as Maddisongirl said...CVID will get you IVIG on its own.

I will add that my vaccine challenge was inconclusive (likely due to autoimmune disease and how it can can effect the immune system), but I'm deficient in 3 of 4 IgG subclasses, so Medicare approved my IVIG on the labs alone and didn't require the vaccine challenge. I don't know if Medicare does this for everyone, but I have never had a problem getting IVIG with my Medicare...starting back to 1997.

I now get approved for IVIG based upon both the CVID/PID and the autoimmune based neuropathy (and receive a 3 times higher dose of IVIG for this diagnosis).

ElaineD · 01-17-2017, 10:52 AM

Dear Sophie,

You mentioned burning skin. That very well may be Small Fiber Neuropathy, which happens when the nerves of your skin are damaged.

Diagnosis and Treatment of Pain in Small Fiber Neuropathy

I take Gabapentin for my small fiber neuropathy. Without it my skin a a cage of pain and itching.

But of course the burning skin may be something else entirely.

The Pneumovax challenge is a simple injection of 23 strains of pneumonia, the infection given to people to protect them from these strains of pneumonia. I had it on my own in 2006 because I was going to be traveling out of the country and I was 64.

After the injection, about a month later, you are tested (again a simple blood test) to see how many of the 23 strains of pneumonia you are immune to from the first injection. I had full immunity to ONE, and very low but adequate immunity to FIVE more. So I failed to achieve adequate immunity to enough of the 23 strains. This was one more qualification to label me with CVID.

The basics:

1. Two deficiencies in Antibodies. Mine are IgG and IgM
2. History of chronic/critical illnesses, often including fungal, as well as
bacterial and viral.
3. Failure to mount enough immunities from the Pneumovax injection.

Best wishes, Hugs ElaineD

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