Help! Born with severe primary immune deficiency. Can Shingles virus levels be reduced somehow?

What's is the IV meds other than anti viral meds or biologics r  dangerous?  im not fully aware of the B cells involvement means ,Do u?

Cheers

HOPE

My team of doctors tells me it’s a complex process for any lay person to understand.  I’m having to receive all my childhood vaccinations and some additional vaccines that if I was relatively healthy I would need them for at least 23 years (i.e. pneumococcal vaccination), In any event, my B cells apparently can not properly detect certain diseases that include Shingles, Multiple Sclerosis, Lupus, Cystic Fibrosis, certain diseases that cause cancers, Meningitis (which I found out can be indirectly caused by Shingles) and other opportunistic infections. I'm essentially the "bubble girl" when it comes to how easy I contract these diseases. On the other hand, there are diseases that I do not contract any more than another person and their diseases that are often obtained through reckless behavior (though not always) such as HIV, STDs, etc. So because I don’t have the former my T-Cell count is near perfect. If I ever got anything that would affect my T-Cell count, though, I would be promptly dead. Furthermore, because certain doctors at time didn’t know the extent of my impaired immunity, even though it should have been quite obvious as I was always a sickly child, I had three years’ worth of deep tissue cortisteroid management with intermittent prednisone treatment to reduce a benign mass. It was caused by Encephalitis and it really got out of control. It was interesting that treating the cranial & ganglion nerve roots was the most effective way to shrink the mass and relieve unbearable pain. This type of pain actually made me contemplate suicide. Anyway, being administered the maximum dose of cortisteroids & prednisone over a couple of years definitely weakened my immune system further. It's a rare phenomenon to have this type of primary immune deficiency as severe as I do. It is thought that contracting Congenital Varicella Syndrome at the time my immune & neurological systems were developing broadened the areas of destruction to the respective genes that otherwise would have provided me with the healthy B cells that I now desperately need. Anyway, I'm on prophylactics at this point and it's crucial for my family that i get the upper hand against this battle with Shingles. My doctors tell me it’s always going to be difficult but it can be managed. I’ve lost a lot to have Shingles this long but I can accept those losses, I just don’t want to have any further complications if at all possible. Despite everything I count my blessing everyday as I know it could always be worse. I just need to be strong for my family more than anything as my parents are elderly (my dad who I inherited this from is lucky to live as long as he did and every day we are acutely aware it might be his last) and my daughter who is my only child is also sick – too sick for someone is young as her. I’ve already lost my brother and we don’t have any other relatives left at this point. Anyway, thank you so much for responding. 

Thank you so much and please forgive me for my lengthy response below. I'm trying to find or start a local support group because I hold a lot of what I'm dealing with inside and I apologize that you got an earful from me as a result. 

Unfortunately, I'm not a candidate for the Shingles vaccination because I was born with Congenital Varicella Syndrome (which you may know is a very rare occurrence to contract that in utero and have the subsequent birth defects like Bell's Palsy as well as a myriad of others that required many surgeries in attempt to correct each dysfunction early on in my life; one significant one that I've struggled with continuously throughout involved severe tremors and they literally treated me with Parkinson's related medications since my late teens; even though I was an above average student - since intellectual disability is another common birth defect - I always wondered if I might have scored as high as my now deceased brother once did; I'm just thankful that I did well in school but I attribute that to having a once intact photographic memory and not intelligence per se). 

With that said I'm still not exactly sure why I'm not able to benefit from a Shingles vaccine. When I want to better understand any subject matter that I'm unclear about I'll mention it to one of my doctors (I'm fortunate to have many highly respected ones treating me) by stating my interpretation and having them correct me so I'm not misguided, and consequently, hindering my treatment by reporting inaccurate information. (Not possessing a proper understanding about the implications of how the Shingles immunization would affect me represents a good example of this further need for clarification). Because I've brought this subject matter up many times early on as the Shingles vaccination was so prevalent when I first diagnosed via skin sample culture and the response I got suggested that because the Varicella virus is so abundant in me having had it in my system before I was born that if I received the Shingles vaccine it would either overwhelm my immune system in a very bad way or just simply not work. I'm not clear on which one it is but I know for certain it has nothing to do with the fact that I'm 42 yrs old. Because of what my team of doctors have reported my insurance has been very liberal on covering things that would not be covered unless one had a potentially fatal disease, which is why I'm on prophylactics to sustain my life at this point and a bit scared about my future I must say.

I’m mainly just want to know how I can determine the levels of the active shingles, which I heard you can do via assessing the CSF fluid, because that would be more indicative of how long I’ve been fighting this as some doctors say it's possible that I've been battling it to some extent for seven years now (talk about the 7-year itch!). And even more important could they ever get those VZV levels down a bit? I don’t want to get worse because it’s difficult to deal with all the parts of my body the virus has already successfully attacked (i.e. major loss of sight, hearing, etc.). In any event, thank you so much for your many blessings and your expressed concern for my daughter. I wish you all the best. I know I'm not the only dealing with this dreadful disease. I'm very sorry about your allergy to acyclovir as well as the other viral meds in that same family. I'm lucky to not be allergic to them. I just can't stop using the restroom and my tremors worsen so bad I can't sleep for days at a time, which causes me to get an opportunistic infection. If you don’t mind I just wanted to also share that the last time (two wks ago) I was on Valacyclovir (because it was supposed to be on a more acute basis so I could tolerate the side effects better than when I take acyclovir, which I’ve been taking on a long-term basis), and this was one of my stronger doses my skin lesions worsened within 48 hours upon taking it but cleared up within 5 days (I've already had a recurrence since I stopped but it’s coming back slowly). Anyway, I thought this time was particularly interesting because it felt like the antiviral brought the infection to the surface of my skin in a very drastic manner and then it promptly resolved it as the sores healed quickly. I wish it would have stayed that way. It wasn't easy to cope with the transformation during the treatment as the lesions have been delegated across my entire body (of course starting on one side only but moving to other areas through new infections) but at the same time I really hope this latest treatment did bring it to the skin’s surface (if that makes any sense) because that gives me hope that I might get somewhere in the long run!