I have been on IV Rocephin for 9 weeks, 4 grams per day.
The past 7 days were hellish. Severe weakness, facial numbness, headaches worse than migraine, light and sound sensitivity to the extreme, incoordination, and head pressure like I was wearing a tight hat, night sweats.
Called my doctor and they said to STOP the Rocephin, this was yesterday. Today, I feel somewhat better.
So I called the doctor back and asked if I could continue on the Rocephin as it was probably an awful herx.
They said: No, stop the Rocephin until Thursday and we'll decide on another antibiotic, we don't want that happening again.
Now I am afraid that I'll lose what I've struggled to put in to treatment. I have not felt any improvement on Roceph to date though. I also know that 9 weeks isn't that long.
What to do? I am thinking IM Bicillin??? I think he will recommend IV Doxy.
All suggestions, comments appreciated.
ps. IV Rocephin has been my First medication. I was sick for 15-18 years before being diagnosed.
Thank you, Rhonda
Tested negative through Quest for Babs and Erlich
Posted by dguy (Member # 8979) on :
Sounds like some nasty herxing. You might explore treatments that involve lower abx doses, or other abx, both of which may limit the herxing to tolerable levels. One treatment that uses low dose pulsed abx is called Marshall Protocol (which you can google). There are other such treatments Out There too.
Posted by jamescase20 (Member # 14124) on :
Do u have only lyme? IF that was me I would take the gasser protocal...but I am no expert...I have bart so...no good for that. maybe you should see if you tank within a few more days...if you do, dr b says co-infection.
Posted by listenswithcare (Member # 10719) on :
Hi - 4gm a day every day is alot of Rocephin! Have you considered suggesting just 2gm a day? That is the protocol that I was on. I doubt I could have handled 4 gms per day.
Even on 2gm per day it was hard for me to keep up the detoxing. Sometimes I think my symptoms were my body reacting to the Rocephin and not a die-off and detoxing would always help at those times.
I hope you have some energy to get in some epsom salt baths, and other detoxing - lemon and olive oil, foot patches (that is easy), juicing, vitamin C to bowel tolerance - flush out your system, that should help.
I hope things work out for you. I would highly recommend switching to Bicillin after Rocephin, many seem to relapse after Rocephin, but the Bicillin seems to keep that from happening (in my case also).
Robin
Posted by feelfit (Member # 12770) on :
Thank you Robin.
Yes, I think that I was becoming toxic from so much Rocephin. I did call this morning and asked if I could try just one infusion a day...but they said to stay completely off until Thursday.
I was also 4 grams per day, 7 days per week....no rests.
I am using lots of C, lemon water, no olive oil, theralac, magnesium, selinium, and B-complex. I was doing detox baths before the picc line, but not now. I also have a great diet and always have, always been a health nut.
Posted by lymex5&counting (Member # 7202) on :
Usually when you do 4 grams a day, 2 in the
morning and 2 at night. You go 4 days on and 3
off. That is what. I am on. It is basically DR
B's protocol. Everyday is really hard on your liver, gall bladder, etc.
If you have been on 9 weeks straight. I think
you might have killed off some of the lyme and
now Babesia is really coming thru. You have alot
of symptoms of it.
I have been on the 4 grams a day for 4 days a
week. For 13 months. I took a month off about 2
months ago and crashed really bad. I still am
not anywhere near back to the progress I had made
in 10 months. I also take 1,000mg of Zithromax
and a pack of Mepron in the morning and one at
night for Babesia. If it were me I would talk
to your Dr about Babesia. You also need to be
doing the detoxing. Also are you following your
Rocephin with Magnesium IV's? That helps alot
of the facial numbness, cramps, and muscle
weakness. Is your Dr doing a CBC and Chem 14 on
a regular basis. I do alot of Glutathione which
also keeps down the liver enzymes. Methy B-12
injections are also very helpful.
I hope you get to feeling better. Can't comment on the Bicillian none of us have ever done it.
Do you have in a PICC line? And how fast were you running your Rocephin?
Lyme x 9
Posted by feelfit (Member # 12770) on :
thank you x9,
I do oral magnesium, not IV. I run my infusion over 1/2 hour which is my Doctor's protocol.
I do suspect a co-infection, but I thought Bart not Babs?
My doctor marches to his own drummer and doesn't want to listen to mine if you know what I mean....suggestions are not appreciated so far as I can tell.
Thank you for your thoughts and opinions, I value all of you!
Rhonda
Posted by jamescase20 (Member # 14124) on :
maybe you need a new duck?
Posted by Chia Pet (Member # 12399) on :
I did Rocephin IV many moons ago and it did nothing for me before I knew I had Babs. Never took it again.
To be honest it sounds like Babs symptoms coming through.
When I did IV Doxy, that is when I saw a huge improvement, then my Babs test came up POS.
9 weeks may not seem like a long time, but my gut feeling has always been that if a drug is going to work you start seeing it's affects quicker than 9 weeks.
Just my opinion.
Posted by feelfit (Member # 12770) on :
Thanks Chia,
I agree with you about the abx. I have become worse, not better in 9 weeks. At one month, a month and 1/2, I was still able to get out on some days.
Now I am in the house 24/7. In bed most of the day. I also agree w/the co-infection prospect.
I actually had 2-3 real good days before I slid down the backside of this hill.
Rhonda
Posted by CaliforniaLyme (Member # 7136) on :
I was on 2 grams a day for 9 months, the first 6 months I just herxed and got worse, then I turned and got better & better- 1 month or 2 months or 3 months in I would have stopped with no gains- so for me I am glad I didn't stop- my doc told me to expect it to take that long because I was so sick-
Posted by feelfit (Member # 12770) on :
Thanks Sarah,
I always take into account your success story. I really do want to continue on a lower dose and see what happens.
Doctor has said otherwise. My home health nurse just left and she talked to my Doctors nurse and said if anything, they will be putting me on Zithromax.
I don't understand this. Does Zithromax address neuro Lyme?
I am really scared.
Rhonda
Posted by chlorophyll (Member # 9667) on :
My doc is talking about starting me on IV Zithro. My understanding is that it works on neuro Lyme, and is a good adjunct to Mepron for Babs.
I have been on IM Bicillin since Sept. and had some interesting Herx stuff soon after I started, which seemed to mean it was ticking off the Lyme. No IV drugs yet. Going through all of that and getting worse must be terrifying. Hang in there!
Posted by je (Member # 14653) on :
I think if you have neuro symptoms you need to use some kind of cyst buster too, like flagyl.
I think a lot of doctors are now doing a pulse (forgot next word) with the abx so that side effects aren't worse than the disease is.
I think the idea is if you 3 days on 2 days off (or whatever the schedule is) your body can recover a little, but the Bb don't have time to reproduce.