IGG Subclass Deficiency & Chronic Shingles

[melissa]

I am 40 and have suffered from increasing bouts of Shingles since 2005, that go on both sides of my body, all over my body at the same time. When I have an outbreak, I also suffer from severe pain in my lymph nodes and flu-like symptoms, loss of coordination, brain fog, fever, and heart palpitations with chest pain. 

I am on daily double the prophylactic dose of Antivirals. They do nothing to prevent infections, and if I miss a single dose, I am ill within 48 hours. 

I did testing to check on Autoimmune. I test positive ANA, and have elevated liver enzymes, so have to have liver watched for Autoimmune Hepatitis, but Doctors don't think even this would adequately explain the chronic Shingles. 

I'm being told by my Doctors that I must see an Immunologist and try to challenge the Shingles Vaccine, and then get IGG infusions or injections to prevent chronic illness. However, they stipulate that it's expensive and my insurance might not accept that I'm sick enough, even though I am having heart complications, yet not life-threatening, and that I am sick so often that I exhaust all my sick leave and have Shingles/Chickenpox monthly, and in my eyes, risking blindness and brain blood clots/stroke. 

I am going to get into the Immunologist, but would appreciate any advice on how to go about finding a solution. 

My sister and I have suffered from frequent strep throat and ear infections, and in my case, some a deadly birth cot fever (Strep B,C, and G infection of uterus post natal with both live births) which are near fatal, painful, and fevers that went very high, and have been hospitalized for this, as well as Mono, Cytolomegalovirus, and Pneumonia as a new born. When I get a cold, I will also need antibiotics to recover a persistent cough and sinus and/strep infection. Sinus infections have caused inflammation of the eyes, and loss of vision. I'm sure this is a kind of familiar list to those with CVID. However, in last few years, I am adding Chronic Shingles to the list. 

I read that IGG1 deficiency, which I have, is linked to inability to fight Herpes Zoster (Chickenpox/Shingles virus). 

Thank you for any support or your stories of if Shingles is part and parcel of your struggles and pain.

 

[perfectlypeg]

I hope you are having good responses to your concerns and that you are able to find adequate doctors to help you. I have been immune deficienct for 20 years now. I have been on immunotherapy for most of that time. Where do the years go? For the past 8 years I have been on Hizentra, a gammaglobulin product that I infuse into my thighs prescribed 10g weekly. Let me first get into the history of these infusions. They were originnally prescribed to the Military when deployed to help them address the difference in immunity factors overseas. In the beginning civilian patients had to wait to see if they would receive their dose (then by IV) or if he military used up the dose for that period. The subcultaneous method of delivery has only been around for about 10+ years. If you get the IV dose it is administered once a month by a nurse. The subcultaneous dose is administered by the patient at home and has taken the therapy to a new level of ease for the patient.

For ME: The side effects are horrendous. I do not know how I might have made decisions if I had known this in the beginning. I was diagnossed with Ulcerative Colitis in 2015 which I believe was caused by the infusions of ramping up the immune system with other people's blood for so long. Yes the cost is high, but is even covered by Medicare now. The restrictions to be prescribed have lessened over the years. At first for me it took six months of constant testing to "see how low you can go." A cruel proceedure if you ask me. I am deficient in all classes of IgG but I am also deficient in IgM and IgA. However that being said, I believe the requirements are that you are only deficient in one class like 1-4 classes of IgG. Anyway, I now do not believe it is that hard. That is once you find an immunologist who is versed in the treatment. It is my experience that most allery doctors just want allergy patients to give shots to. My immunologist wants to see me only one a year and after that I am on my own. Finding a doctor who knows more about the immune system than me is really hard and I am not that smart.

In medicine, immunology is just not a popular specialty. Why? Because if you cure the immune system, you cure all diseases, and where would they be? Ask yourself, if you took care of your immune system, how sick would you be? We are talkinng about pathogens who have existed for thousands of years. Not going to get rid of them any time soon. Medicine is only directed towards bacteria, refusing to address virus, parasite or fungus. Those are going to be the ones that will come back to bite us. Maleria is a parasite, and I can't list the virus's that are milling about. Infectious disease doctors are no help as they only want to address the major epidemics.

My advice: Look into alternative medicine but don't drop western medicine. Use them together for your best results. I have received my best results from Hyperbaric Oxygen and Ozone treatments, but they both take a long time to work. I used ozone for a year before I saw anything.

You have to research....then pick a treatment plan...then stick with it. I have come to realize that there are many options out there that are good and will work. Problem is that most people give up on them just before they start working. We are a very impatient nation today. We want to go to the doctor, get one pill, and be back on the tennis court tomorrow. Right?Don't worry so much about what method of treatment you choose as much as how consistent you are with the treatment. That is the key to getting well. We did not get sick instantly, not really. Immune deficiency does run in families. But not necessarily the disease itself. Just the propensity to get diseases.

As we age, we stop oxygenating our bodies and disease sets in. People are constantly looking for the next big bug to come and bite us. I believe that the next emerging disease that we will face is the illness caused by the bugs already inside of us. Low lying pathogens just waiting for the enviornmental, personal toxins we absorb and ingest do not go away when we finish the antibiotics. Our immune system just keeps them in check.
Makes sense that as we age and become less resistent to the world around us, our bodies simply break. They fail to keep the enemy out of the playground. Our gatekeepers get tired and worn out. Our immune system is part of every body system and can be affected in every area of human health. No body in medicine want to heal us, they just want to manage the symptoms. Until the people of the world rise up and say, Money should not play a part in life and death. Medicine is not about business of medicine, but about the health of human beings.
Peggy

[gillie]

Hi Melissa. I can only address your concerns from the British perspective, which is very, very different to the American one because of our National Health Service.
Your mention of shingles brought back memories of a very bad time for me, right back at the start of the century. I was suffering bout after bout of shingles, which I went to my doctor about. He gave me suitable treatment which cleared up the rash, until the next bout hit shortly after! To keep the story short, I contracted a severe middle ear infection which landed me in hospital. I was discharged, but only 2 weeks later i had to be re-admitted as the other ear was now badly infected. Another general anaesthetic followed, the second within a month. The surgeon came to see me on the ward and said,
"That second infection shouldn't have happened.I think there's something else going on, so I'm referring you to the department of immunology."
I was stone deaf for 2 months, was seen by an immunologist after a blood test, and he wrote down " You have 0.04 of your immune system working. As soon as I can arrange it, you'll start having infusions of ivig and in the meantime we'll get you a couple of hearing aids!"
That was summer 2002. I've had a gamma-globulin infusion once every 2 weeks ever since. I've never had shingles again and I've regained a lot of my ability to hear, life's good,so I'm not complaining.
I hope you get the help you need really soon.