I hope I'm not jumping for joy too fast, guess the "relapse" word is used around here... but here's our report of success!
My daughter is undergoing IV rocephin for lyme and IV cipro for bart, while finishing up malarone oral for babs. She also takes flagyl, lyrica and Ultram ER and supplements. This is her 4th month of IV.
Last year she developed gastroparesis, paralysis of the stomach. She was hardly able to eat or drink. See "Bell's Palsy of the Gut" article. We thought this might be from lyme, but probably from bart.
After starting IV she herxed and was hospitalized twice and on Total Parental Nutrition. She was severely dehydrated, resulting in fainting and mild concussion.
Her IV treatment has been interupted and quite a challenge, but I wanted to let you know that after a couple of months of treatment her GI symptoms started to improve. She had severe pain, nausea, vomiting. Basically on a liquid diet, and her stomach only working by gravity.
Now she can eat many normal things! The non LLMD Dr's are amazed! She will participate in a NIH study for gastroparesis. Hopefully they will listen to her story and it will hellp others. Next week they will repeat the gastric emptying study, a 4 hour one, and also do a test that measures the movement of the stomache muscles. I expect is to be greatly improved over the one she had two months ago that showed "grosely abnormal"!
Pray she continues to improve.
Her migraine like head pain has imrpoved a little, but now that's another story! Not sure it it's bart. Not finding much info on people with similar symptoms. Hope this helps someone.
Keep on Keeping ON!
Love, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm glad to hear about her feeling better.
I will pray for her!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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feelfit
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Yay MommaK!
So happy to read the report about your daughter!
woo-Hoo Posts: 3975 | From usa | Registered: Aug 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
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So glad she is doing better
I have gastroparesis too. I could always at least take in liquids...i was living on ensure for awhile..and your daughters sounds drasticly more severe.
Did they ever give her reglean (a prescription) or suggest taking digestive enzymes (supplement) - these where the things that made me able to eat - along with watching what i ate.
I hope she gets rid of those nasty migranes soon. I know headaches are horrible (and light and sound and everything makes it worse).
Thank You for sharing the good news of her improvements
posted
I hope she continues to improve and gets rid of those nasty headaches....
good to hear good news
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Thank you for sharing. We all need to hear some good news once in a while and this definitely qualifies!
Posts: 984 | From San Diego | Registered: Nov 2006
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My headaches were apparently caused by babs, and low dose malarone did not kick it. But some people do respond to malarone. I needed mepron + biaxin/zithromax for a couple of months. It may be that this med is being used by your doc because the total drug load is pretty high with coinfections and lyme, or because of your daughter's age, if she is still a child.
Posts: 8430 | From Not available | Registered: Oct 2000
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It is so wonderful and inspiring to sign on and see successes. It gives hope and makes me know that through the tough times of therapy, it will be worth it in the end.
God bless you and your daughter. She sounds like a real fighter.....AND a winner.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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Thank you for your support! I believe we do need to celebrate every small victory in this big battle!
I listed her meds off the top of me head, I know I forgot actigal and probotics. My daughter is 19.
Yes, Azure Wish, she was taking reglan and donnatal. She didn't think they did anything. Actually an anti-anxiety drug, activan, helped her to be able to eat. It helped the nausea and she wanted to eat. We discovered this by accident in the hospital when she was given it IV to counteract a bad reaction to another drug. Now I've heard of others on GP boards with similar success with activan.
Thanks lou! I have been trying to gather info like yours to take to our llmd appt next week. She has taken malerone off and on 4 a day, but this will be the first time she got to finish the 4 months recommended dosing. At first it did cause a big herx. Not sure how the llmd will decide if the babs is "cured" since so many symptoms overlap, and it was a clinical dx!
Thanks! Will keep you all informed about future milestones!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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bettyg
Unregistered
posted
momma and daughter; CONGRATS
momma, please copy your link here and paste it to a REPLY on SUCCESS STORIES IN 'SUPPORT"...thanks!
WE ALL NEED THESE MAGIC MOMENTS to give us that extra push!
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