chronic illness · chronic pain · ivig

you down with ivig?

After several years of doing numerous treatments and often taking up to 30 pills a day, I have felt the need to simplify. So many supplements didn’t make me feel better. A lot of medications didn’t make me feel significantly better or only worked for a little while. The acupuncture, hyperbaric oxygen tank, nutritional IVs, and nerve blocks didn’t help. PT would help me gain some strength but my pain never wavered.

Thankfully the treatment team I have right now are not interested in having me take tons and tons of supplements or meds or other things that don’t help and just cost $$$.  Hallelujah!!

So what AM I doing?

In late March my pain management dr sent me up to New York City to see a neurologist who specilaizes in neurological issues stemming from Lyme Disease. Dr. Younger ran a battery of tests ( MRI, PET scan, SPECT scan of my brain, a spinal tap, 15 vials of blood, a nerve conduction study, a tilt table test, and a vestibular test). Some of what was found wasn’t surprising. Some of it was. The good news is I do not have cancer, heart issues, lung issues AND (drum roll please) that my Lyme Disease is in remission based on my spinal tap results.

The bad news is thanks to the Lyme being active in me for several years,I have a lot of left over damage. My brain has been very affected as I have hypo metabolism in my temporal lobe and perfusion in both lobes. I also have small fiber neuropathy throughout my entire  body, vestibular issues in my right ear, POTs,  wonky immune issues, and nerve damage in both feet and legs. The CRPS in my left foot has also increased the nerve damage as my left foot and leg have more pronounced nerve damage than the right based upon nerve conduction studies.

So what the hell do I do to fix this hot mess!?!?

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Because my skin biopsies clearly showed that I have small fiber neuropathy, my insurance agreed to cover something called IVIG aka Intravenous immunoglobulin. “It contains the pooled, polyvalentIgG antibodies extracted from the plasma of over one thousand blood donors.” In layman terms, it is a product made from blood donor’s plasma that helps your body by delivering IgG antibodies to fight infection and  block the patient’s malfunctioning immune process to prevent the nerve damage. I lucked out that my results were so clear cut as my insurance approved it within days of my biopsies being back. My treatment team hope that with time the IVIG can help me since I am an ideal candidate. Because of the severity of my symptoms, I get infusions once a week for the next 3 months. The hope is to increase it to twice a week eventually.

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First infusion. I look exhausted and busted but I’m  not wearing sweatpants so score one for Genevieve.

The first one I had was at NYU Langone Center on the rheumatology floor where they do a number of infusions. It was a very long long day. I got TWO bags of saline which took a couple hours to drip and then after once those suckers were finally done, I FINALLY got the IVIG. We are talking 4+ hours of sitting there while fluids flow into you. Super boring but also super awesome. My poor parents were troopers hanging out with me all day while I got my drip on.

Unfortunately I am hyper-sensitive and my body reacted poorly to the first infusion. I got it on a Wednesday and by Saturday I started getting weird headaches. Fast forward to Monday and I had a horrible headache, face twitching, an big increase in my nerve pain, couldn’t stand up without feeling like I would faint, and low low blood pressure. Once the twitching became constant, we called my pain dr and the nurse said to head to the ER.

That ER visit was your typical nonsense. 3 hours of waiting in a really uncomfortable wheelchair. No shoes on because they hurt my feet too much combined with sweatpants and an old shirt (with no bra) so I looked really trashy.  Then after all the waiting, I was just given IV dilaudid and fluids and sent home without any real game plan except “Call your pain dr, he needs to do more for your pain.” I am still very grateful they could help my pain get down to a more manageable place even if it was a very long wait.IMG_5268

Apparently how long you drip the IVIG can make a big difference in how the body tolerates it (fun fact for you!).  So now my IVIG infusions are run much slower and  last 4.5 hours on average but at least my  bag of saline is dripped simultaneously as to do them separately would mean a very very very long infusion. The great part is that the nurses come to me and I can lay in bed while I get infused. It is incredibly helpful as I am the most comfortable in my bed laying down with a pillow under my knees and it’s one less thing for Sean to drive me to. Car rides really flare me up so I am into anything that means I don’t have to be in a car.

The home nurses have all been incredibly kind and lovely. Charles in my main nurse and we watch Real Housewives together and drink coffee and have a fun time joking around. He likes me even though my veins are constantly difficult and they like to blow out while he’s trying to get my IV set up. Sean and I call him Charles in charge.

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my body is not a problem to be solved.

The bummer is that I feel pretty crappy after getting an infusion. I wake up with really nasty headaches, my joints hurt a lot more, my nerve pain can flare up a lot, and I am super crazy tired.  Ive hit a few days where I literally slept all day except waking up to take my meds and then going back to sleep. Both my drs say this is normal and even a good sign as people who feel worse are the ones who respond best. It’s hard to believe that though when I am not seeing very little results and feeling really really awful all the time.

The good news is that my chronic nausea has gotten A LOT better with the IVIG and based on my last tilt table, my blood pressure is little more stable when I stand up. Small changes but changes nonetheless. Its easy for me to get hyper focused on if it’s helping my pain but I know it’s best to look at the larger picture and notice if anything has shifted slightly.

Crossing my fingers that this treatment will help me start to feel better while simultaneously being at a place of acceptance that this may not work and that’s not the end of the world.

What has made a difference with your health?

xo,

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17 thoughts on “you down with ivig?

  1. Sending love and good thoughts your way. I love reading your blog. I think you should consider writing a book – I think you might be able to reach a wider audience, and compassionate voices like yours are so needed everywhere!

    1. Thank you Mary, writing has been a lot more helpful than I ever imagined. I don’t think I am a good enough writer to write a book though 🙂

  2. I know you and Sean will be happy in Charlottesville Va. You will be with peopole who really love you both and will be willing to help of there own free will.

    Mark

    1. Thank you Mark. I know it will be a good change for us and will also make Sean’s life a lot less stressful. You guys will love Charlottesville when you come to visit!!

  3. Thinking of you and praying! I am so proud of you and admire your strength, and willingness! I wish you and Sean the best in Charlottesville. Love you, Cori

  4. You are an amazing inspiration to all the people you have touched in your lifetime. Your beauty is not only on the outside, your smile, your kind eyes, but your beauty runs deep through your veins. From a young age, I knew you would change the world in some way…and you are doing by living your story and sharing it with all of us. I love you much…sending you strength and love. Xo

    1. Thank you Brooke!!! I would really really love to meet up sometime if you are ever in c-ville. You were such an integral part of my growing up. I love you too lady. xoxo.

  5. Hi, I’m extremely glad to see your progress with the IVIG. I was just wondering if anyone had experience with managing the pain of small fiber neuropathy, my mom took IVIG for a long time and it worked, she even forgot to take pain medications. But unfortunately, the last session she had rather than feeling better after the IVIG drip she felt worse, and her overall pain levels flared up and is enduring pain like never before, I was wondering if anyone else suffering from SFN has had these “flare ups” after several successful IVIG drips and also any other methods of pain management.

    Best,
    Ralph

    1. Hi Ralph,
      I honestly did not have much progress or results with IVIG. I stopped doing them last month after not being able to tolerate the side effects. I did them from April-November and my small fiber and large fiber nerve damage got progressively worse as did certain issues with brain. My pain NEVER got better on the IVIG and honestly got worse. Since being off of it, Ive had some of my pain slightly stabilize. I would contact the dr that is doing them and ask if this is normal and what they can do. I hope they can get her some relief!

      1. :/…yeah its terrible because during the summer of 2015 when she was getting the IVIG every month she felt great. She was up and about. I did some research on my own and found a drug called LDN (low dose nalextrone) it was originally FDA approved in the late 80’s for those with opiate/alcohol dependence. But I found a researcher from Penn State Dr. Zagon, he was able to recognize the medications therapeutic properties in pain relief for those suffering from auto-immune disease. I actually reached out to him directly and he said that this medication should “be a winner”. We are actually picking up the drug tomorrow. I hope it works, I’ve read a lot about it and the results are pleasing. I will keep you posted on her progress and let you know if this help her with the pain relief..only downside of this medication is that it is an opiate antagonist so you cannot take any opiate based pain killers while taking this. So, initially the pain will be much worse, but the upside of it helping in the future is worse the try i.mo. here is a link so you can read about the drug itself.
        significant.https://www.immunetherapeutics.com/lodonal/
        I’m an equity researcher and my company and I initiated coverage on this company, which is how I discovered it. It is also inexpensive, insurance does not cover it but it only costs $44.00 a month. Hop this helps.

        Best

        1. Low dose naltrexone is great! I have tried did twice over the past two years and did not have results with it but SO many people have. I do use ultra-low doses of it to help me not habituate to my pain meds but it doesn’t help my pain. It works differently at different doses. It is really hard to not be able to take opiates, that part and going through withdrawals was very difficult BUT if it works it will be all worth it. I would also check out Ketamine, it is being used a lot for my particular nerve disease CRPS. It may also help with her nerve pain? You may also want to check out the Calmare machine. It is being used for nerve pain as well. Take care!

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