Posted 7/8/2019 3:31 PM (GMT 0)
Hello wanted to come on and share a little good news for those that need encouragement and also ask for some advice from those experienced with gall bladder issues.
First the good news... I’ve posted several times over the last year asking for advice because my daughter was really struggling and not making much progress with treatment. She was bedridden and even wheelchair bound for a few months. POTS symptoms so bad she laid flat in bed because sitting up right was too difficult. She struggled with pain of every type, too much to list. Nausea and vomiting to where she lost about 15 pounds over a pretty short period of time. It was frightening. In March she hit what I hope was rock bottom, she developed complex regional pain in her feet and legs and could no longer walk. Her dr switched antibiotics up and ordered a picc line. New protocol seems to be really helping. She no longer needs a wheel chair, she’s gained almost all her weight back, gets out of the house almost daily for outings, and is feeling so much better. She is not even close to remission but it seems as though she’s really turned a corner... knock on wood. She’s living a bit now and we hope her progress continues. she still has many symptoms but they are so much more manageable. For those of you in that place where you think there’s no hope, hang in there and don’t give up. For us it was about finding the right combination. Not just one thing but many things seemed to make that difference.
Now the not so good news... the IV Rocephin seems to have been really good for my daughters neuro symptoms but I’m freaked out about this gall bladder thing. She’s on Actigall and I’m supplementing with d-Limonene. She is also on a daily homeopathic liver and gall bladder cleanse called apo-hepat but I’m still worried. She’s has had a ton of gi issues as a part of her Lyme and co-infections. Acid reflux, nausea, vomiting, and alternates between constipation and diarrhea. These symptoms have actually improved with treatment but they are still a daily problem. Difference now is that the acid reflux no longer makes her constantly vomit. She does seem to have pain just under her right rib cage which can be the gall bladder from what I’ve read but how do I know? She has all kinds of pain everywhere so at what point do I take her to a GI specialist for a scan? I dread the thought of having to see a non-lyme specialist because they were absolutely no help when we needed it most. Now with a picc line in her arm and the additional oral antibiotics, I don’t really want to have to explain all that to a new GI dr. I know they will blame the symptoms on the antibiotics and think I’m nuts for destroying her gut. Truth is the antibiotics seem to have helped her gi symptoms but I’m still worried about damage to the gall bladder. Anyone with gall bladder issues have advice on this? So appreciate this forum and looking for advice yet again!