on page 14 paragraph 4 and page 16 para 7-9. I'm now into week 6 of my implementation of the protocol: 4 grams infused in one-go over 4 hours (can be infused for a shorter time but I'm doing 4hrs) for four days per week for 14 weeks. As this protocol is new to my LLMD and not the cef protocol they usually use I need to suggest full coverage for the other forms of the bacteria not covered by the cef, also follow-on treatment once the 14 weeks are up.
The Ceftriaxone has worked wonders after 5 weeks for treatment on my abdominal/heart/neuro irregularities on lying down - I may now lay down to sleep again! Prior to this I had to sleep upright at between 70-90 degrees upright.
My problem now is helping the treatment to be effective on my sensory type nerve damage in my feet/ankles/legs. I'm also taking Artisunate along with the cef but feel I should be doing more combos.
Just wondering if anyone else has done this 4g, 4day a week, protocol from the guidelines and if so what additional orals works best along side this protocol for neuro lyme? I know it is specialised to each patient but I'm still interested in success or improvement stories - please post here or via a pm to me.
Also what is a good oral protocol/doseage to follow on with after the 14 weeks?
Many thanks in anticipation for any help here.
PV
Posted by nonna05 (Member # 33557) on :
I just pray it works
Posted by gmb (Member # 23562) on :
I do generic IV Rocephin 4 days on then 3 days off. But I do 2gr mixed in a 20cc push syringe twice a day (start to finish with SASH flush and Hep it takes only about 15 to 20 minutes). I do this Tuesday thu Friday and take weekend off.
My script orals include:
Mepron, Zithromax, Bactim DS, Actigol (for gall bladder), and Gabapentin (neuro stuff and sleep aid). I pulse Tindamax on Monday and Tuesday to get at cysts and any skeets coming out as Rocephin wears off.
I see my LLMD tomorrow and expect she will ramp that up.
Also plenty of good quality probiotics and supplements.
Taking additional oral ABX, I would first suggest Flagyl or Tindamax as a cyst buster. Then decide if Babs is causing any overlapping symptoms. You'll need a least 6 mo on Mep/Zith if your insurance will cover.
Everyone is differnet and where you are in treatment, infection load, and ability to deox will determin how agressive (or appropriate) your treatment should be.
sounds like you're off to a good start with IV, but time to kick in with something new.
good luck
gmb
Posted by faithful777 (Member # 22872) on :
I know this is still the standard drug to start with but many relapse on this drug. I hit a wall at three months and changed to IV Clindamycin.
From that point on I started getting better slow but steady. My husband is about to start IV and I specifically asked that he not start with Rocephin.
Posted by sickmate (Member # 31502) on :
I once had great success with 4g Rocephin + macrolide + hydroxychloroquin. My best combo. But I relapsed later.
Posted by PV (Member # 20436) on :
Thanks all for the good advice. I have just relapsed a little around 10% on the 90% Lyme heart improvement by taking the cef. So I need to add some further cyst and intercellular busters asap.
Need to decide on a drug to tackle each, along with how many/which days of week to take them and doseages. All preferably from a proven successful formulation. That is a tall order but will just have to start somewhere!
Thanks again for the help Many regards pv
Posted by twicebitten (Member # 5412) on :
When I took IV rocephin 4 gr. 4 days on, the 3 days off he had me on Flagyl, which to me made me feel way worse than the Rocephin did.. my insurance quit paying for IV's after 3 months, so I don't feel I had adequate time frame for realistic results