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IV treatment, how long till I feel better?

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Posted 8/10/2009 1:05 PM (GMT -7)

Hi, I'm new to this forum.  I've read some of the posts on prior topics and have gotten a lot of great info.  Thanks!

I've been on IV Rocephin for 8 weeks; plan is for 12 wks. with possibility of longer.  I'm not feeling better like I'd hoped.   Infection started in 2003, diagnosed in Feb. 2009, saw a LLMD in June 2009.  Anybody out there have similar response?  I talk to my LLD later today so I'll see what he says.  Just wondered about other peoples' experiences.  Thanks!

Posted 8/10/2009 1:41 PM (GMT -7)
Cleo Springs,

Welcome to the forum!

I think everyone's experience is a little different but we do have some members that are on IV. Maybe they can give you some insight.

Let us know how your appointment goes:)
Posted 8/10/2009 1:47 PM (GMT -7)
Thanks! This is a great resource. I appreciate the welcome!
Posted 8/10/2009 1:58 PM (GMT -7)
I think everyone is just so different, it would be hard to say when you will feel better.

I've had my picc since Jan. and thought I was getting it out in July. Although I feel better since Jan, I think the dr. wants me to feel much better and I think he might want to leave it in for the rest of the year. It probably took about 2 months before I noticed that I was feeling better.

This is a long haul for me and I know I am getting better but I will be well when I am well. I would love to have it taken out, but I know it is the best thing for me right now to continue with this treatment plan.
Posted 8/11/2009 5:03 AM (GMT -7)
I've had the picc in since March and although I no longer have bad body and joint pain, I still have a very, very long way to go. The brain issues remain which I was told take the longest to clear up. If I haven't made any more progress by the end of September, either the iv med will be switched or another one added.

I started to get sick around 2001 and the llmd initially told me I would need at the bare minimum 6 months of iv's. Now it looks like I will need at least a year. Everyone responds differently but usually the longer you've been sick the longer it takes to reverse the damage.
Posted 8/11/2009 7:52 AM (GMT -7)
I was on IV in December of 07 for 4 months. I did not feel better until AFTER the PICC was pulled. While I was on it I felt pretty lousy perhaps it was herxing. It was gradual but I did get better. I am still on orals however and have been for about 2 1/2 years. Be sure to have your thyroids checked and if you are on meds be sure the dose is high enough. After IV I needed my dose of Armour for hashimoto's raised considerably. Everyone has a different experience. I wish I could have afforded to stay on IV longer because the effects were significant. Don't get discouraged and besure to take your probiotics. If you have the bacteria of lyme then the IV will help.

blessings
Posted 8/11/2009 12:06 PM (GMT -7)
Thank you so much. I talked with my LLMD yesterday afternoon, and he believes that I
am on the right track and about where I should be. However, he did add
Armor thyroid to my regimen, and we are going to pulse the rocephin (double the dose for 4 days, then off 4 days, for 30 days). The armor thyroid will possibly help with fatigue. Thanks for your advice.
Posted 8/11/2009 12:17 PM (GMT -7)
Cleo Springs,

I'm glad your appointment went well:) Good luck with everything and don't hesitate to ask questions. These girls are all very knowledgeable.
Posted 8/11/2009 1:14 PM (GMT -7)
I've been on Rocephin since 2/25/09 - LLMD wants me on it for one year.  Also taking 400mg doxy a day (oral) and 100mg Diflucan - 2 weeks on, 2 weeks off.  I started noticing improvement about 4 months into treatment.  Physical symptoms much better, neuro symptoms about 50% better.  But LLMD told me I will probably pulse with various orals (and Tindemax is one of them to break open the cyst form) for the rest of my life - this may not be the case, but she is preparing me for the worst case scenario.  When I first began treatment, my CD-57 was 16; last month, it was 42!  So, while it's still below the norm of 60-300, I am improving, albeit slowly...but it is such an improvement from where I was in February. 

Best of luck & Hugs,

Lala

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