posted
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 !
Posts: 200 | From Boston | Registered: Sep 2010
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posted
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
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
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.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
oops almost forgot that you must get a script for actigal to save your gallbladder
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
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.
Posts: 2094 | From NY | Registered: Oct 2011
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posted
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.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
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.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
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.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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