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Posted 12/14/2008 6:49 AM (GMT -8)
Hi All:
haven't been on in awhile - just wanted to get input for those of you who did IV rocephin.

I am 9 weeks in, the good news is that the brain fog is gone for almost all of the time -my brain feels like its old self. The bad news is that the fatigue continues. It is not as debilitating as when I started, but still pretty bad (still worse than before I started IV's)

Last summer while on Zhang's, I could never get rid of the brain fog, but the fatigue was much much better. Now It's the direct opposite.

I guess what I want to know from folks who did IV rocephin if they felt fatigued the entire time on it? I have a friend here who was treated for rocky mountain spotted fever and echrelosis with IV's and she said she felt horrible the whole time on it.


I obviously will do the minimum of 12 weeks, but if I could sustain my gains neurologically and get my energy levels back up, I probably would try orals again.

One last thing, my LLMD thinks some of the fatigue could be due to babesia, so we are treating it with mepron and zithromax now.

Thanks
Posted 12/14/2008 8:51 AM (GMT -8)

Hi jginkc- I just started on Rocephin this week. I only had bad fatigue for 2 weeks and then it got much better. The problem is fatigue is my major problem so any kind of relief from this is great for me. In fact Rocephin was the only abx that reduced the fatigue by at least 75-80 percent. When I say fatigue that doesn't even come close to describing what it feels like. I am also treating babs with malarone. I am going to start pulsing IV Zithro in the next couple of weeks. I am worried that is going to cause more fatigue for me.

I can really say that since I started abx two years ago my fatigue is more debilitating at times. Before abx I was able to work through it but that isn't the case most of the time now. I will keep you posted on how I am doing. If I remember correctly the fatigue from the Rocephin didn't hit me till about the 9th or 10th day. I am happy to hear some of your symptoms have resolved. This is one nasty disease..We have had no power for 3 days now so I am using a borrowed computer. I will try and post again if you have any other questions.

Kim

Posted 12/14/2008 7:28 PM (GMT -8)
I have had 3 rounds of IV Rocephin. The last round was 10 weeks.... I kind of think I was getting better on it (for once!). I am now on oral Rifampin and Levaquin. I am slowly improving but I think it has more to do with finally getting a little pain relief. The pain meds seem to mask the LD somewhat.... but every morning it's still there..... I wake up and LD says, "Hello, I'm still here - haha - I have a hold on you whoooeee!"
Posted 12/15/2008 8:11 AM (GMT -8)
Thanks for the input - I think when week 12 gets here (in two weeks) I will ask for another CD 57 and then reevaluate
Posted 12/15/2008 1:06 PM (GMT -8)
jginkc, Was thinking about you and your treatment with IV. So glad to hear your brain fog is gone. How many wks until you noticed no brain fog?? Tues will be 6 wks for me on IV Rocephin, and I am tired most always. The brain fog is starting to lift, but not like I had hoped. With this being my fourth time on Rocephin since March I thought for sure it would go away faster. I dont have pain like I used to, and I can stand from a sitting position and just take off walking.... I LOVE IT ! ! My activity level is increasing but the brain fog keeps me from the organization skills I used to have. The more I try to be organized I get an increase in anxiety and then total confusion sets in until I can calm down. But I have noticed with each treament that my fatigue does get better, and I would say a good three wks after every treament my fatigue level was not as intense. I think the Rocephin itself makes us fatigued. The only other meds I take are a multivitamin, B12 dissolvable, and thyroid med.

I'm so glad to hear that your progress is going well. My question is in what wk did you most notice your brain fog gone? Do you still get headaches?

Take care and Merry Christmas
Stacy
Posted 12/15/2008 2:15 PM (GMT -8)
Hey Stacey:
It took a good 4 weeks for me to really notice the brain fog going away. Now it only returns when I herx. I started the mepron and zithromax on Saturday and am feeling it today. I don't have headaches anymore.

Like I said, having the brain back is good, but I need my body to catch up!

Take care, keep me updated.
Posted 12/17/2008 9:48 AM (GMT -8)
Hey there jginkc,
Tues was the dressing change and just talking with the nurse she had told me she also dealt with lyme. She caught it early about 4months after bite, but what she did right off the bat was IV Rocephine for 4wks and doxy for about 6months after, this was back in 1999. She has never gotten any symptoms or no signs of it coming back.....This is GOOD NEWS! I have so much hope that IV Rocephin will be our answer. We just need it longer than some.

I am getting back to my ole self, and I love it. Heck I feel so good I am going sledding with the kids after school today, which will be the first time in three years.

With the headaches I get maybe 2 a month and that is when that special wk every month that women go thru. Ya it sucks! Believe me we all hate it. LOL!

So what feeling are you having from the mepron and zithromax? Herx or less fatigue? Have you tested positive for babesia?

Take Care - Keep me updated
Posted 12/17/2008 10:11 AM (GMT -8)
I was on IV Rocephin (and Zithro) for a total of 4 or 5 months. That is what made me feel the best I have felt out the last three years of so. The brain fog went away within the first 4 to 6 weeks and the dizzy spells started to get less and less frequent. The fatigue was a little tough with the IV meds as I believe we are really fighting off a great deal. By the 2nd month I was feeling better and had some more energy and didn't feel like I wanted to lay down and nap all day long, which was good b/c I needed to work. I was told the IV are very strong and to expect fatigue b/c our bodies are working so hard to fight off everything. Maybe it's a good sign?!?! Hang in there! I pray you start feeling better soon!!

Blessings,
Leah
Posted 12/17/2008 12:49 PM (GMT -8)
thanks- my LLMD just suspects babesia because i had a sudden onset of symptoms two years ago (flu like, immediate) and had some nightsweats that cleared up with zhang's artemesia and continue to have huge fatigue. i tested negative for it, but I know a lot do.

now I am herxing from the mepron and zithro. Tomorrow will be 10 weeks on rocephin. I think I will insist on a CD 57 test at 12 and if its up to 130 (it was 73 in october) I'll go back to just orals and continue the babesia treatment.
Posted 12/21/2008 11:34 AM (GMT -8)
Hey jginkc,
I am on my 16th week of IV roc. I'm still having some neuro. symptoms. I'm not sure what to think at this point. My symptoms will get a little better and then they will get bad again. It just depends on the day for me.
I'm not sure what to do next. If this doesen't work then what will? I feel like i'm running out of options.
I just try to stay posative and take each day as it comes.
How are you today?
Posted 5/1/2009 9:48 PM (GMT -8)
I've been on IV Rocephin for about 6 weeks and Mepron, Zithro and Mino for about 12. I herxed with the oral antibiotics and then started to feel slightly better. Since starting the Rocephin I'm back to square one with extreme fatigue and do not notice any improvement with the brain fog yet. I never really felt like I herxed from the IV's. My llmd told me right up front that I will need a minimum of 6 months of IV Rocephin for any chance of recovery or reversal with the nuero/cognitive issues. He also told me that the fatigue I'm experiencing now is from my body fighting the infection. A few people have told me that they did not see any improvement with Rocephin until the third month so I'm still very hopeful. Now that I think about it I do not get as lightheaded or dizzy as often as I use to so maybe it's a start.

Are you doing the Zhang protocol along with the IV Rocephin?

You should maybe try to extend your treatment with IV Rocephin beyond the 12 week period.

Good luck.
Posted 5/7/2009 10:54 AM (GMT -8)
I have been on IV Rocephin (2g 1x daily) since February 25. In January, my CD57 was 19. I herxed terribly for the first three weeks, then that subsided a bit but still pretty foggy and still in pain. Doc tested me for the co-infections and did another CD57 - Co's all negative, but CD57 now a 16. Last week she started me on 400mg oral doxy (because she does not believe the accuracy of the co-infection labs, just as my Western Blot came back negative with 2 bands present) and let me tell you - I'm a mess. And I know it's herxing. I'm on 100 mg diflucan (2 weeks on 2 weeks off) as well. She feels I will need the Rocephin for a minimum of 8 months - probably a year - not sure about the doxy yet, but at least 60-90 days. If don't see improvement soon, she may stop the Doxy and start me on Tindemax or a form of it (Flagyl) to get to the cyst form but as badly as I am herxing right now does not want to do it yet...as too much herxing can be dangerous. Just this past Wednesday when my infusion nurse came, my BP was 150/110 (it normally runs about 120/75).

So while I'm sure this is not comforting, it's the truth. And it's probably not making much sense because I can berely think.

Laura
Posted 5/7/2009 6:29 PM (GMT -8)
Try IV vitamins or vitamin shots 2-3x a week for energy.

 

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