I started IV Rocephin this week, 2 grams, 7 days a week. May change this up later says LLMD.
I have noticed an increase in body aches, fatigue, brain fog, spaciness, disorganization. What should I expect as time goes on? How do I know if it's doing something?
Posted by donaldmn (Member # 16717) on :
If you are noticing an increase in your Lyme symptoms, take that as a GOOD sign that the Rocephin is actually doing what it is supposed to be doing-killing off bacteria.
My Hubby has been on IV Rocephin for a little over 2 months now-and is not feeling any different now than before he started IV treatment, which is very discouraging to him.
His LLMD told him not to expect to feel any different for atleast 4 months while on treatment-so you are fortunate to be noticing something only after a week into treatment.
I think everyone responds differently to treatment, depending on what ABX they are on and how sick they are.
I say this is a good sign for you-it sounds like the Rocephin is definitely doing something, and you may feel a worsening of your symptoms as time goes on.
There are many knowledgeable people on this board who can better answer your question than me, as I'm only basing my opinion on how my Husband has done on Rocephin-nothing so far for him with this ABX.
Good luck-
Posted by kim812 (Member # 17644) on :
My first round of Rocephin in 2007 I started noticing improvement in 5 weeks. It was very small but continued each day. By 2 months I was doing extremely well and having days of no symptoms at all.
I continued to keep doing well until my line was pulled 6 months later due to gallbladder and low blood counts.
My doctor (Dr. H) had told me at the time that he expects slow improvement by 2-3 months and if not then it probably won't work well.
Yeah it caused me more tiredness than I already have. I will say I herxed big time my first time about a week after starting treatment. But from then on it was all uphill. Godd luck and I hope it does great for you..
Posted by kim812 (Member # 17644) on :
I am now on my second round of Rocephin and it is doing nothing this time unfortunately. I am not sure what is next..maybe a different IV med. I have been on 3 months with no response. It is very upsetting cause it helped so much the first time.
Posted by CD57 (Member # 11749) on :
Kim maybe you don't have much Lyme anymore? Have you treated co's?
Posted by tcw (Member # 15698) on :
For my son it seemed to help his most severe neuro symptoms like stabbing ear pain, strange smells, unable to open one eye. The more persistent muscle and diaphragm spasms maybe slightly improved after 6 weeks of 2g/day.
Like all abx, it is a life saver for some, an expensive experiment for others. It does seem to have a better effect than most abx on pure neuro symptoms like trigeminal neuralgia, psychosis, etc, at least anecdotally.
Posted by sammy (Member # 13952) on :
Hey CD57, i'm new to Rocephin too, also on 2 grams daily.
This is day 9 for me. So far the only thing i've noticed over the past couple days is increased tiredness. My head even feels heavy tired.
I'm hoping and praying that this protocol will stop the progression of my neuro symptoms and begin the healing process.
Looking forward to hearing more about other's experiences.
Posted by TerryK (Member # 8552) on :
I was IM generic rocephin. After a few months my depression and fatigue were about the worst they had ever been but my pain was and is remarkably better.
I couldn't continue IM because of bad local reactions to the shots but will be going on IV in a few months.
I'll be interested to see how other people have done and how you do in the future. Please keep us posted.
I do think reactions vary depending on bacterial load and ability to get rid of the dead bug debri.
Terry
Posted by viva (Member # 8183) on :
CD,
My husband's initial reaction to IV Rocephin sounds similar to yours. Extreme fatigue, whole body achiness, brain fog. Our LLMD did say this was a positive sign. He is doing his 3rd month of Rocephin, and has experienced improvement in cognitive symptoms, which is what we were targeting. LLMD said to expect improvements to be "slow and subtle."
Best to you, Aviva
Posted by kim812 (Member # 17644) on :
Yeah, I am thinking co's are still my problem. I have treated both bart(8 months) and babs(1 year). Not treating either right now. I was only on 1 malarone and have heard that wasn't enough.
Posted by CD57 (Member # 11749) on :
Thanks for the updates. I'll take this as a good sign/die-off. Viva, is your husband still improving with the IV Flagyl?
Posted by viva (Member # 8183) on :
CD,
It's IV Rocephin, not Flagyl--but yes, I think overall the movement is forward. It was really evident at first, then more up and down after that. But I think it's been a very positive move for him.
Current plan is for him to stay on it through this 3rd month, then possibly to switch to IV Doxy, to target bart as well.
Please keep us posted on YOUR progress.
Posted by CD57 (Member # 11749) on :
Week one: Should I look for another herx or just slow steady improvement?
How do I know if it's not doing anything?
Posted by alliebridge (Member # 9103) on :
I will be starting on it next week, so I'll let you all know how it goes with me.