posted
I met a true lyme survivor (face to face) the other day who licked the keets with a month or so of IV Rocephin...said it just about killed him too, but he is 7-year no relapse...pretty insperational considering he lives in the same town and had a lot of the same nuero symptoms that I have
So lets talk rocephin...when it worked and when it failed and how to convince your non-llmd doc that you are ready to throw in the towel on orals and get serious. I dread to think but it's been suggested despite my denial that my condition is Stage 3 - Chronic Nuero Lyme as my primary symptoms are nuero with others that come and go and the whole thing started five years ago.
Three months doxy saved my job and the first month of Ceftin brought a first herx, but the effectiveness wears off daily so I know if I stop I'll be starting over, and like the Doxy, I fear I'll have to keep increasing the dosages.
I think the Keets are at bay, but I want to try to deliver a knock out punch, even if it means a rougher road for a while. The more I read, the more I fear the keets will be delivering the knock out punch.
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I've been on IV rocephin for 6 months. I'm also on doxy (300 mg). The doxy started mid-October.
It took 4 1/2 months of IV for me to feel like I was in the land of the living.
I am noticibly better now. I am "here" rather than spacey. I don't feel like I'm going to drop things, and I don't feel clumsy.
Many of my other symptoms are decreasing as well.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, friend!
IV Rocephin was not too hard on me, though you might find that new meds attack new areas of infection and bring new woes. I think it's definitely worth pursuing.
With your mindset, I'm betting you will push through it.
You're lucky to have found a non-LLMD duck to even entertain the notion!
Do ask about Flagyl or Tini or a cyst-buster drug down the road some to add to your regimen. You don't wanna have come this far and have left a buncha smolderin' cysts behind! When I was ready to pronounce myself 'cured,' Flagyl kicked me upside the head hard for nearly a solid month, proving definitely that it's a good step NOT to avoid.
Remember too that as bug loads decrease, herxes tend to get milder, so hope for the best. I was scared of Rocephin too, yet it was a cakewalk next to Flagyl. I quaked with fear every time I opened that bottle of pills, whereas I had the IV routine down so thoroughly I could make coffee with the other hand arm and get ready for work while infusing.
Do keep us posted how you're doing!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Have you tried any orals from the macrolide family such as Zithromax or Biaxin? I had spent a long time on Doxy but once I switched to Zithromax it was like night and day.
I believe the IV route is the best, but it is a hassle which brings its own unique complications. If you can't talk your non-llmd into IV, you might be able get him to switch you to a macrolide.
-------------------- Jack Posts: 385 | From South New Jersey, USA | Registered: Jul 2001
| IP: Logged |
posted
When on Rochepin i.v., how often do you have an i.v., daily, weekly, etc. Sounds promising compared to the orals. Any info. will be appreciated regarding this treatment. Dalphia
Posts: 97 | From Tennessee | Registered: Nov 2005
| IP: Logged |
posted
[QUOTE]Originally posted by Dalphia: [QB] When on Rochepin i.v., how often do you have an i.v., daily, weekly, etc.
I am infusing IV Rocephin 5 days a week. I started with one infusion per day of 2 g (20cc) and after 5 weeks of no improvement (except possible psychological herxes) have been prescribed two infusions per day. I have done this a couple of times this week. I am also taking lots of other meds, and have more trouble with yeast on the Rocephin, but otherwise my stomach has been ok.
P
Posts: 449 | From Vermont | Registered: Nov 2004
| IP: Logged |
posted
Just keep in mind that the same treatments do not work the same way in everyone.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
My husband has just finished 28 days straight of once daily IV Rocephin (1g) - two isolated days of improvement but loads of new symptoms including heel pain, tinnitus and 'gurgling' sensations in his head. Just waiting to see doc about continuing oral meds. Frankly, I can't see any evidence that the IV had any benefits - but perhaps it has killed off a few of the wee b........
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was on IV rocephin for 4 1/2 months before I felt like I had enthusiasm for life again. (Note: I still had symptoms, but I felt alive, and had energy and sparkle back in my life).
I have just completed 6 months of IVs and am still on them, and see continued improvement.
I also recently started 300 mg doxy, having been on 800 mg ketek prior to that.
Dalphia~ I infuse 2 gms rocephin daily. It takes an hour to an hour and a half from start to finish. I start at dinner, so I'm sitting down for part of it. I also take Actigall to keep the gallbladder from sludging, and I have a monthly gallbladder ultrasound.
Sweet Pea~ I also take 4 nystatin pills daily (and some chewable acidophilus). I have not ever (knock on wood ) had any problems with yeast, or any other GI problems. (I just finished eating a baked apple with a touch (just a touch ) of brown sugar! )
Lou is absolutely correct. What my experience is will not be like anyone else's. But, it can be helpful for some of you to know that at 6 weeks on IVs I was wondering why I wasn't improving.
I just kept charting my days...1 to 4. One means I'm in bed. 2 means I can function and do the bare minimum but I feel awful. 3 means I can function, do the bare minimum and add one other thing, but I lack zest. 4 means life is pretty darn good, and I have enthusiasm. 5 is a very good day....I feel almost normal except for my nerve pain.
It wasn't until 4 1/2 months of IVs that I got into the "4" range consistently on most days. Now I'm there almost all the time, except for my monthly "flare" times, which I'm in now, which push me back to the 1-2 range.
My CNS have dimished greatly. I feel much more "connected" to my body.
My thoughts to you who have just started the IVs is HANG IN THERE and CHART YOUR SYMPTOMS.
Some people get better in 6 weeks, some 6 months.
Good luck....God speed....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
I am on week 9 of rocephin and like Timica didnt feel anything until week 7.My head is just now starting to clear,it will be interesting to see what another two months brings.Just had my first ultrasound.My only problen is my WBCs are now at 3.0,may have to pulse if it drops lower.I have noticed the cycles are pretty much on time with rocephin where i couldnt pinpoint them on orals.My bilirubin which has been off for the 4 years i have been sick has now been within range the whole time on rocephin.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
| IP: Logged |
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
failure.
three months rocephin + zith. not much change except my eye sight got much worse.
later treated for lyme and bart with tetra, later discovered RMSF. very good progress after 2.5 years.
2 months diflucan and I'm so much better. some pain, fatigue and word retreival issues by week 7. On ketek/omnicef now, fatigue and pain gone.
probably will have to do anothen 3 month cycle of diflucan/abx.
What works for one may not work at all for someone else. so much is individual body chemistry and number of co-infections
Posts: 1572 | From Pa | Registered: Jun 2001
| IP: Logged |
posted
Thanks, Timaca, I guess I just need to hang in there. Glad you are feeling better. I take nystatin, diflucan, and probiotics. I switched probiotics a couple of days ago and that has helped.
P
Posts: 449 | From Vermont | Registered: Nov 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
) had any problems with yeast, or any other GI problems. (I just finished eating a baked apple with a touch (just a touch ![[Wink]](wink.gif)
) of brown sugar! )
Printer-friendly view of this topic