Dare I actually say? I finally feel somewhat human after the Hell ride I had been on for almost 9 years. With the host of infections, both bacterial and viral, the immune injury from a drug combo, seizures, mcs, and then nerve damage, I have walked through the fire. I am still on IV doxy and low dose steroids, along with IVIG and pulsed very low dose Valcyte for the HHV-6 infection. But, I feel better than I have in years. I had better knock on wood now.
I just had another EEG and some other neuro testing, and my local neurologist says it has been a long journey, but I am stable. I have been driving, painting (showing in NYC in April), socializing, working out in a gym since this month. My mcs is much, much better and I can basically come and go. I am not foolish about getting near smoke, etc., but I am not housebound.
My llmd thinks I am nearing remission, but I do have autoimmunity and nerve damage. However, like I tell my family--I am vertical; it is a good day!
I guess I feel lucky to be able to see my son play basketball, to go to plays, and to see my friends and family again in social gatherings. I can laugh again, and although I will never be the me I was once before, I am certainly a chameleon. I still have life to live.
Time will always tell, but I am grateful to my wonderful llmd and my drug allergist who both pulled me from the pit that I was in. Keep fighting, and it is difficult being a warrior. Know when to ride the tide and when to come out fighting. Be well. Dream wellness.
Di
Posted by Dekrator48 (Member # 18239) on :
How wonderful to hear of your great improvement!!!
Wishing you only good days ahead!!!!!
Posted by Jill E. (Member # 9121) on :
Di,
What wonderful news and so inspiring! I still have polyneuropathy (burning and tingling) even with five years of treatment, but the regular nerve conduction tests aren't sensitive to show nerve damage in the peripheral nerves from what my neurologist (not Lyme friendly) has said, and the LLMDs agree that the test is not enough to qualify for IVIG.
I'd like to know how you got qualified for IVIG - do you have a chronic demyelinating polyneuropathy diagnosis?
My story is a lot like yours, although I'm nowhere near remission, just facing Babs now. But lots of medication damage, seizure-like activity, nerve problems, and one doctor thinking this is going autoimmune.
Any other words of wisdom would be welcome! I have read many of your posts in the past so I know what a fight you've been through!
Jill
Posted by Melanie Reber (Member # 3707) on :
Oh Miss Di, This makes my heart sing. Thank you.
Posted by bettyg (Member # 6147) on :
di, please copy your story also to SUCCESS STORIES at top of support; we all need encourgement, and you hve provided that!! good deal. Posted by ArtistDi (Member # 2297) on :
I will comment about how I qualified for the IVIG. I wrote an arts medical grant which covered the testing and appt. with Dr. Y in NYC, neurologist. That practice is very costly, so my pcp arranged for me to work with a new hematologist at Cooley Dickinson Hospital, Northampton, MA, and she runs my IVIG.
The thing I found for someone as complex as myself, is that I needed to assemble a medical team. One doctor was not going to cover it all; here are my team players:
Drug Allergist LLMD PCP Neurologist (Local) Hematologist Alternative Doctor (for detox, mercury support)
It took kissing a lot of frogs or should I say ducks until I found this team to get me better.
I have done a lot of things, and found that I needed both alternative and mainstream medicine to get better. I have done sauna detox, L-glutathione pushes (1-2 x weekly), 1 magnesium sulfate push a week, certain vitamins, acidolphilus, cranial sacral work, (Diflucan, Valcyte pulsed, low dose), IV doxy, low dose steroids, IVIG. These are things that have worked for me personally throughout the years.
I also guess a lot of praying alternating with a lot of swearing. And, I can't forget a family that wouldn't give up on me, nor my doctors who kept me on even when it looked dire at times.
There were some very dark times when I first had the immune injury from drugs and then I became allergic to everything--food, supplements, drugs. Hence, my drug allergist, who sees me through everything, including uterine surgery this past summer. The seizures were tough to get though as well, and I honestly don't know where I found the strength sometimes to continue, but I did.
My doctors say it is a testament to my will, because they say others would have given up. I had two young kids that I didn't want to leave. They were 5 and 7 when I first became ill; they are now 14 and 16. I did it for them.
Di
Posted by lymemomtooo (Member # 5396) on :
Di, such great news..Keep going and get as close to 100% as possible. lmt
Posted by TerryK (Member # 8552) on :
Wonderful news!! So glad to hear all that suffering and hard work paid off!
Thanks for checking back in and letting us know the good news.
I'm with lymemom, keep going. Hope to see you report back here that you are 100%!!!
Terry
Posted by kgarrett (Member # 17420) on :
What and inspiration not to give up!
Posted by dmc (Member # 5102) on :
Thank you, thank you, for keeping us positive, hopeful, and informed with your post.
Your success is awesome. Congratulations on your showing in NYC! That's wonderful news too.
Posted by pab (Member # 904) on :
Di, This is such great news. Enjoy your new life! Posted by feelfit (Member # 12770) on :
Awesome ArtistDi!
A true inspiration and a reminder to NEVER quit!
Good luck on your showing in NY!
Best, Feelfit
Posted by Jill E. (Member # 9121) on :
Di,
Thanks for the additional details on your protocol and the IVIG.
Yes, for me, the seizures, tremors and myoclonus are the most unbearable - even worse than the constant pain. You are an inspiration.
Jill
Posted by Tincup (Member # 5829) on :
I am so very happy for you.
You've been through so much... and I am glad you made it.
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Big Grin]](biggrin.gif)