Hi everybody,

I know we like to keep these posts positive and I promise I will try but I feel like I might lose my mind!! If anybody has been through a similar situation and has any insight or advice I'd appreciate it!

I have CVID, have seen two doctors here in the Denver area that would not treat me. I began emailing my former Doctor's nurse in Irvine, CA. My initial emails were ignored, basically. She'd tell me she'd show my labs (I'd faxed everything over with more than enough proof, plus he's the Dr. that dx the CVID a few years back) to the Dr. and get back. Months would go by and finally he looked at them and said he'd see me again and that I was a candidate for SubQ. Yeah! I asked what blood work he needed and wanted to do everything at home in Colorado so there were no surprises or long waits once I got there. All was taken care of. I flew out there (had to pull over to rest twice on the 30 min. drive to the airport!) saw the Dr. on Monday and was scheduled to have the scig on Friday in his office "just to be safe" and then I could go home and do home health.
I received a call from the nurse on Wed (after being there two days) that she'd sent the info to a company that my PPO Ins didn't cover so she was resending it through my Ins to get the blood product sent to me and I'd bring it in Friday to her to infuse. Well, my insurance initially denied me the scig (even though all of my levels and two sub levels were very low and I have all the supporting infections, etc.). I was told I needed more blood work that would go to the Mayo clinic. I went in Friday to do the blood work and was willing to stay but was told the blood work would take up to 10 days. I went home sicker and more frustrated. During all of this the nurse made me feel like I was really irritating her for asking questions. The whole experience was very depressing. I come home and a few days later in the mail I received an approval for the vivaglobin (with the start date being the Friday that I was supposed to receive it in CA!!!) Although I am thankful, I am still getting nowhere. I've talked to about 10 different people at my insurance company, and a manager at the Dr.'s office who say that I couldn't bring the blood in anyway, that's against their policy. I must get it from their pharmacist, my insurance says they won't pay for that. You'd think this has been done before and I'm wondering how much more I can take. Talked to the nurse yesterday who informed me that the Dr. is on vacation, she doesn't know when he'll be back, "I need to be patient and accept things" she told me in a very condesending tone!! I would NEVER tell somebody to accept things the way they are when they were this sick, it's so uncaring! I don't even need the Dr. at this point he wasn't going to be in the office the day I was scheduled to get the scig in the first place. I have the order from the Dr. and the approval, yet here I sit waiting, frustrated. I'd give up if I wasn't so sick and I wasn't so convinced that the igg product would help. I know that there are hurdles, but this seems almost as if it is just not meant to happen.
Sorry to go on and on (trust me thre's plenty more to this story:-) but I feel like it's almost a joke and usually the insurance is the problem, yet I am approved. I just wonder if anybody else has been through this and how they handled things. Best of luck to everybody, we need it in this crazy world with this crazy disease :-)

Don't feel bad. My granddaughter, Shelbie, has six kidney stones right now and her supplemental insurance doesn't have a Urologist in their plan so no one will take her as a patient. We have been fighting this for three weeks now. She has been living on pain medicine all this time while we try and find a doctor. We got approval for out of network but he two doctors wouldn't take her. As for diagnosis, she was diagnosed by her ENT who sent her to an Epidemiologist. She now gets SubQ every week and is doing well except for the kidney stones. Yesterday's ultra sound showed blockage in the right tube and still no one will help her. It all goes back to the almighty dollar. And my 13 year old granddaughter continues to suffer.

Look up coramhc.com
Find an office in your area and ask to speak with an intake coordinator. Tell them your situation and they may be able to
help you find a physician who is willing to treat you and also
be able to work with your ins. co. in getting you qualified.

I hate to say it but...there are many physicians who do not
understand immune globulin and are, quite frankly, scared of
it due to the possible side effects. I am very familiar with
this medication and side effects are directly related to the
manner in which the drug is infused. Of course there are going
to be those who have a bad outcome but it could be comorbidity
versus the IG. Some patients can tolerate a faster infusion and
some require a slower infusion. If you get it in a doctor's office
I can guarantee it will be given much faster that it should
especially for a first time dosing. I know patients who started off
with huge side effects who later had none. Physicians do not think
out of the box in treating side effects. You can use fluids to
pre-hydrate. Immune globulin is a blood product and therefore high
in protein. It takes three times as much water to metabolize protein
and a dehydrated person will have more problems. Also, a low dose
steroid can be used prior infusion with the hydration. Tylenol and benadryl every four hours and begun a day before the infusion works
for some. Good luck! Hope you get your IVIG!

I was diagnosed with CVID earlier this year and began researching Vivaglobin as soon as it was advised by my Immunologist. I also happen to have RA so I take Methotrexate and have infusions of Remicaid every 6 weeks, so the prospect of yet another infusion was a little unnerving. After lots of research, questioning and soul searching I decided to go forward with the treatment. I still didn't feel comfortable with it, but agreed to it. I began in May. The purpose of this is not to frighten anyone, but to let everyone know what my particular experience was.

I had many of the common reactions, but the visiting nurse did say that mine seemed a little more severe than anything he had seen before. By June 1st I was beginning to get bad enough headaches to go to the ER. Initially I was diagnosed with migraine headaches and given pain medication. On June 25th, I was admitted to the hospital and a spinal tap was done. I was diagnosed with Viral meningitis. They immediately began an antibiotic via IV (which is effective in only one of approx. 70 strains of viral meningitis). I began to spiral - to make a long story short, my kidneys were now failing.

After a long hospital stay and string of doctors, the over-all opinion was that the Vivaglobin caused the meningitis and several of the doctors (including the Infectious Disease, Pain & Drug specialist & "Hospitalist") all agreed & all said they had seen this before. The renal failure was the reaction from the antibiotic (Acyclovir) given.

At present, I am out of the hospital slowly recovering (my kidneys are functioning at 40% but slowly improving) and I am told the meningitis will continue to improve. I have been told not to continue the Subq IV, Remicaid or Methotrexate for now. The Infectious Diseases doc tells me there are other ways to combat CVID and when I have recovered from everything, we will begin to tackle it.

I hope this helps someone. If nothing else, if your "gut" tells you to keep looking, then keep looking! If you have several complications involved, do your research, be your own advocate and have someone close to be your advocate in case you aren't able to. That's what saved my life!

I'm glad you are on the mend.

You say the over-all opinion of your doctors was that the Vivaglobin caused the meningitis.

What do they base their opinion on? Did they report their finding to the FDA? Did they report their conclusion to CSL, the drug manufacturer?

Are there any other cases of viral meningitis associated with the specific batch of Viva you received? I would think that if it was contaminated more than one person would contract the disease from batch.

I've never heard of virus transmission through IViG or subq gamma.

I've toured IViG plants. The numerious viral removal steps and tests, from collect to manufacture, every batch goes through makes it very difficult for me to accept that you contracted he illness through the Viva.

Please keep us posted on your progress and the investigation of your "contaminated batch."

I am still a work in progress as this has just happened. My Infectious Disease physician spent a significant amount of time as we charted out each infusion along with the symptoms of my disease. He and a couple of other docs involved all indicated that this was not the first time they had seen this happen. They have informed the immunologist that prescribed the treatment - who incidentally, was involved in some of the studies done. I am sure as we progress, FDA, CSL, etc. will be notified. However, I don't think it will come as a surprise. I would also like to add, that when we questioned the immunologist about possible "problems" - long term, short term - he told us that he had spoken to the drug manufacturer and asked numerous questions along those lines and their response was that their primary issue at this time is saving lives.

Either way, I have been taken off the medication and recovering. I'm curious though - how does one get to tour an IViG plant?

Hello JCroft5,

I was sent a message to get in touch with you. I'm also in Denver, and hope that I might be able to assist you. I was diagnosed in Dec 07, and have been on treatment since late March. Please ask Suze for my email, she will know how to get in touch with me privately.

keysfins

Hi keysfins,

Thank you for offering to assist. Susan has been a big help with her referral to Dr. Volz. I have an appointment with him on Monday. I'm really hoping he'll take me on as a patient with CVID. The specialist I saw last week asked me what CVID stood for. I undertand it's rare but it's hard when immunologist after immunologist turns you away. I have been sick these last few weeks, so traveling back to CA to see my old immunologist is out of the question right now. If you have any info, I'd love to get in touch. My email is JoannTC5@yahoo.com if you want to email me. I'd love to find out what you and Susan do with the foundation and hopefully I can help out too in the near future!

Joann

According to my view I have recently been diagnosed with stage 3 endo. through a leparoscopy. My husband and I have been trying to conceive since Oct. 2001 and we decided this past April to go through the infertility tests. I had the lap on June 19th and was diagnosed. I live in Northwest Indiana and am seeing a wonderful reproductive endocrinologist.

Lincon

Holistic Rehab