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

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I have a severe primary autoimmune deficiency with my B cells that at age 42 was assessed at 97%. I was also born with Congental Varicella Syndrome (mum was 3 months pregnant with me when I contracted the disease). It is thought I've been slowly fighting a losing battle with Shingles over the last 7 years (that led to Meningitis, EncephalitisCholesteatoma, Occipital & Trigeminal Neuralgia, partial blindness, and many spine defects). For 14 months I've had very apparent recurrent lesions that have been properly cultered as VZV each time upon reinfection. I have recently moved so I am starting with a new infectious disease doctor. I heard that if I'm indeed fighting an active Shingles virus the amounts can be assessed through a Lumbar Puncture (Spinal Tap). I also heard that I can receive a more aggressive IV treatment to possibly reduce the amount of the virus (I'm having major kidney issues after being on both Acyclovir and Valacyclov for a combined total of 150 days (daily dosage amounts ranged from 400mg to 2g).

Could anyone verify if either or both of these statements are true? I know I'll eventually find out the "hard way" but I really would prefer to have an answer before I become much worse. I have a daughter who has Cystic Fibrosis that is very dependent on me. Please help! Thank you so much in advance!!-Jenna

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  • Posted

    Don't give up searching for the right dr. To help you. I have heard there is an IV that can be given although no Dr. Has ever recommended it in my own case. Honestly reading what you wrote enlightened me to a wide range of things that I was unaware of. I hope you find the help you are searching for. I know how hard it is...Cyndi
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    • Posted

      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. 
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  • Posted

    I am very sorry to hear of the complications u have suffered. I have shingles at the first outbreak my dr. Immunized me with the shingles vaccine. This is beleived & has in my case cut down the # & severity of outbreaks.

    Active shingles can be identified from a skin sample from a lesion. Spinal taps I'm not sure.

    another thing to consider. Even after out break it's helped me . I am allergic to acyclovir & other viral meds to control outbreaks. 

    Ask UR dr. About the immunization injection in UR case.

    hope UR daughter is well.

    many blessings sent UR way.

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    • Posted

      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! cheesygrin

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  • Posted

    There is no cure for shingles, but treatment may shorten the length of illness and prevent complications. Many years ago it was thought not to give live zoster virus immunizations to a patient due to UR reasoning. However that has changed to recent studies have shown the body will in turn fight off a higher number of zoster virus due to a switch that is turned on in the autoimmune system at a certain number of zoster virus invaders. That is the theory now for immunizations after live zoster virus is already in the body. There r many treatment options depending on the area infected, the virus treatment varies. 

    Antiviral medicines to reduce the pain and duration of shingles. 

    Pain medicines, antidepressants, and topical creams to relieve long-term pain.For severe cases of shingles, some doctors may have their patients use corticosteroids along with antiviral medicine also Antidepressant medicines, such as a tricyclic antidepressant (for example, amitriptyline).

    Topical anesthetics that include benzocaine, which are available OTC that you can apply directly to the skin for pain relief. Lidocaine patches, such as Lidoderm, are available only by prescription.

    Anticonvulsant medicines, such as gabapentin or pregabalin.

    Opioids, such as codeine.

    If the shingles virus affects the nerves originating in the brain r serious complications involving the face Bell's palsy , eyes blindness can occur. Treatment depends on the nature and location of the complication.i am not a specialist. I am so very sorry for UR complications. Too much for one to manage. I hope u r seeing a specialist with this disease. I often fear just how far this disease will eventually take over more and more. I am not symptomatic since they immunization injection. Control issues have changed reciently and protocols for management of the zoster virus immunization is suggested in any case. U might check into that again. 

    My my heart goes out to u . 

    Keep on touch

    CHEERS

    HOPE

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