Hi everyone, I think I will be going this route in the next few weeks, per my llmd's recommendation due to persistent neuro issues. Just curious to see how many people on here have done this and their experiences. I have been on orals for almost a year and they have helped A LOT. Brain fog and that stuff is very persistent though!
Thanks for your replies !
Posted by LSG Scott (Member # 21624) on :
if you can get IV don't be afraid of it, it's the best care you can get for neuro Lyme, it saved my life and i was very lucky to have it, i did fine with the pic line and with care you will too
good luck Scott
Posted by Dogsandcats (Member # 28544) on :
I had the "ball" of Rocephin. I plugged it into my port and I could walk around the house with it or put it in my pocket.
I don't remember the cost difference because it was how it was sent to me by the pharmacy.
I had no problems with it.
Posted by LSG Scott (Member # 21624) on :
oops almost forgot that you must get a script for actigal to save your gallbladder
Posted by Lymedin2010 (Member # 34322) on :
Rocephin, brought me from the dead as well. �I was on the bed with extreme exhaustion and I could only whisper. �Could barely walk very far too. �Extreme head and neck pressures that were unbearable.
By the 3rd week I was 90% and ecstatic, with lingering head and neck pressures only it seemed.
Unfortunately that with Mepron and Biaxin just increased my symptoms over time, after the third week. �I started with a list of 5 or so symptoms and through the whole treatment ended up experiencing two pages worth and feeling like like I was dying time and again. �Mostly from o2 blockage to my neck and head. �It felt as if I had a blockage to the head.
Hard to believe and still has me puzzled.
After Rocephin I tried Ceftin (similar to Rocephin) but oral. �I continued to decline with this too. �Not until Doxy did the head and neck pressures finally subside, more so than any other ABX and it felt super. �By this time it had already spread throughout my body and Doxy appeared to have encysted Lyme.
I felt occupied and infiltrated, but not in extreme pain and discomfort while on Doxy. �Remove Doxy and everything worked in reverse for the head and neck, in the same order that it initially melted away with. �If I had a smart LLMD this person would have LISTENED to the clues and dosed me with flagyl. �I think this would have been the key.
Posted by lyme918 (Member # 29686) on :
I had my picc line placed just over two weeks ago, and I am on the Rocephin "ball".
So far, I have seen a few improvements and am doing well. Just make sure you get actigall as well.
Posted by undiagnosed22 (Member # 28152) on :
Thank guys, for the responses!
Anyone else???
Posted by twicebitten (Member # 5412) on :
I took IV Rocephin for 3 months. It didn't help me much, but I think I needed at least a years worth. I took Rocephin 4 gm for 4 days per week, and with actigall I might add. The other 3 days I took oral flagyl. To me the flagyl days were much more difficult.
It took me a year and half to begin to see improvements with orals alone. I think after I get some tx for coinfections I will pursue IV again for neuro sx.
Posted by undiagnosed22 (Member # 28152) on :
up
Posted by undiagnosed22 (Member # 28152) on :
up
Posted by Tgym (Member # 23638) on :
Im a month in. Rocephin twice a day and Tindamax. I am taking Ursodil for the gallbladder twice a day. The first week I was pretty fatigued. Its gotten better where I can work but I still fatigue pretty easily. Ive had a few days where I feel like something is happening and a number of days where my symptoms were worse. My symptoms are all neuro as well.
Posted by Tracy9 (Member # 7521) on :
Been on it a month and seeing wonderful benefits. My son was cured by it along with an oral protocol. My husband was at 90 percent but did not follow through with orals afterward and completely relapsed, and is now about to restart. My younger son also did amazingly well on it but has other complications and now has to get IVIG for several months before he can go on IV again.
Posted by kidsgotlyme (Member # 23691) on :
My daughter was on Actigall and it was only because her doctor ordered an ultrasound monthly that we found out she had sludge in her gallbladder.
Actigall is not always enough to protect the gallbladder.
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