Update- After IVIG Bad Reaction
I always try to update when I can and share my story in detail so those who may have questions or concerns about the things I am trying or going through may get a real experience instead of the one the doctor tells you. I made this blog to hold nothing back and be as real about lyme and chronic illnesses as a can. Hopefully this may help somebody in the future or make them feel some comfort that someone else went through the same thing they did.
So today is day 3 after the reaction to the IVIG (gammagard) and I still feel a little different and my head has severe pain when I stand up or bend over. I was told before-hand I might have a bad reaction to the IVIG and a migraine (I have a 5-6 years history of migraines and I have had Encephalitis). Before the infusion I took the 1000 mg of Tylenol as recommended by my home nurse but I also took my 30mg of Norco and 30mg of Morphine ER and other meds like Ketotifen. I knew I would have a reaction since I did on the heavy metal test IV also.
I am used to migraines so I wouldn’t have went to the ER for just the migraine itself but this was worse, couldn’t walk, talk, see and couldn’t keep anything down even after 8mg of zofran. Zofran never helps me but the ER just thinks it’s a miracle med. A friend in the medical field thinks it could be Aseptic meningitis but I’m not sure. Like I said in my previous post the ER just thought I was having drug withdrawls or a common headache (SIGH). If you want to read on all the side effects I had from the IVIG infusion click here and scroll down.
For the next infusion we are going to slow the infusion to maybe 8 hours (instead of 5 hours) and I am trying to get some migraine meds which I know might not help. I will also be doing an extra ringer of fluids this time. I thought taking a nap would help but that’s when I woke up with the migraine so I don’t know if I will sleep after the IV either.
I have also been waiting for my Ketamine infusions to begin up to 3 times a week. We have been waiting on UCSF to refer me to UC Davis. UCSF said they send the referral a couple weeks ago. So I call UC Davis today and the lady was very unhelpful. She told me my referral was “declined” because they have no room for me in the infusion center. I explained how I get too car sick and this was the closest place for me or if she knew a near by pain clinic and she said “sorry try google”. My mom was told by a guy at UC Davis “sure just get a referral and we will get him right in and infusing in no time”. Ummm nah! So I am on the lookout for a good, friendly pain mgt center that does Ketamine infusions weekly within Vallejo up to Sacramento area. Thank you.
Hope you all have a flare and pain-free day!
___________________________________________________________________
49er Bryan
Lyme Inside - Living with Late Stage Lyme Disease 
Dang honey, you sure are going thru enough. I think about you a lot and know you are in my prayers too. Thanks again for all you are doing for so many of us lyme sufferers. Sending my >3, hope and prayers for relief and a new day free of pain. barbara
Thank you, and prayers and hugs right back at you. Better days are coming, hold tight
I first got lyme disease in 1995,i work out every day & i don’t claim it even if i experienced it the ringing in my head,the tingling in my hands& feet,i lost some hearing in both ears;But thanx to my Lord savior he is still carrying me threw it all,to all u lymes patients God did not want you to be a quitter nor did he give u the lyme! God is good &his grace and mercy are for you
I will never quit, my motto is never give up. we will beat this disease
I just had major abdominal surgery & my dog had surgery on his knee. And my parents just left (live across country) & my husband works a lot, long hours. It’s really tough battling this, especially when you’re herxing. I feel for you & all those affected by Lyme disease.
My double vision grew worse coming out of surgery. It’s almost 2 years of this seeing double everywhere I go… I still have hope that I will beat it, or put it into remission just like my cancer.
I love how open you are about this disease. It’s like confronting that shadow and bringing it forth into the light for true healing.
Not many can do what you’re doing.
I find your blog like a Rock, solid strength in the face of this storm & emotions. To always give hope… to see through the turmoil… to help others to truly understand, & be moved by it.
Wishing you lots of good healing ~ better days ahead!
That brought a tear to my eye and made my night, thank you so much. The support we get from our spoonie family is the best. I have had the double vision ut only on and off for a few years so I know how horrible that can be but no where near how you have it. I’m sorry and I hope you have a great optometrist helping you out. There are a few lyme optometrists. You will beat this and put it into remission, you have done it before and you are one tough survivor.
I know it’s hard to see right now with the overwhelming amount of things going on with your life but one day everything will be at peace and you will feel better, your hubby will be by your side more often, your dog will be healthy and you can invite your parents for some bonding or skype them daily.
We will all get through this and we are never alone. Keep looking around each day and find one of life’s tiny things that make you smile. It may be a dark day but there is always something around to brighten it up. Wishing you better days and healing. Stay strong! Thanks again 🙂