posted
Hi all, I was doing so well after being bedbound for so many years.. could stay up for most of the day, etc. and thought it was behind me. I've done 8 mths of IV Rocephin but about 3/4 of the way through I began to have horrible sx like flushing, sweats (light), more pain,more fatigue, etc. and though I've stopped the IV's those sx have progressed to the point I lie down a LOT during the day and can barely function. So depressing since I thought I had left this behind many yrs ago.
Being so low functioning was horrible enough, now I feel like I'm back to square one. Thanks for listening.
Posts: 394 | From Southeast | Registered: Oct 2012
| IP: Logged |
posted
Have you treated babesia? I know that can give you great fatigue. also mycoplasma can too. I'm sure there are others. I have the same issue, sorry.
Posts: 486 | From USA | Registered: Jan 2012
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Have you treated coinfections? Read Dr. H's latest book Why Can't I Get Better? It will give you a better understanding of this disease.
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
posted
Thanks for the reminder, I need to order Dr. H's book. I did treat babesia (sort of) but couldn't get to the high dose my doctor wanted me to and everything we'd try to combine say Mepron and Malarone (1/4 dose) I would have the 'dying' fatigue, breathing issues, etc.
I just don't understand why I can't seem to lick babesia. Appreciate everyone's input. This is such a difficult illness, hard for anyone to believe what we go through. Thanks all.
Posts: 394 | From Southeast | Registered: Oct 2012
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Tailfeathers-I am in the same boat. Almost word for word.
Couldn't tolerate the mepron zith combo.
Fatigue is crippling me. My "bursts" of energy are enough to get me to the bathroom and back and then I am exhausted.
I'm sure it is babesia for me also, as I treated myco for 8 mos.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I couldn't take zith, so mepron/zith was not an option for me.
So, my lyme doc got rid of my babs with Bactrim DS and artemesinin.
He said it takes twice as long as mepron/zith to get rid of the babs this way.
Maybe after so long on the Bactrim you would be able to then tolerate the mepron/zith.
And, Bactrim hits bartonella also. So, it's a twofer.
As soon as I started the Bactrim, I got horrendous flares every 7 days like clockwork. Same day and time every week.
Once I reported this, my lyme doc added the artemesinin to the mix. That did the trick. It knocked those flares down to nothing immediately.
I had to take the art to encompass the flare. You don't take it every day, in other words. Since my flares started on Friday evening, I started the art on Friday morning. Since my flares ended on Sunday evening, I finished taking art on Sunday evening. Monday through Thursday, I did not take it.
If you take art daily, your intestines will make an enzyme that keeps you from absorbing it.
Hope this helps you! Those babs flares are the most horrible thing! They made me into a zombie. I didn't move or talk. I felt like I just went in and out of consciousness. Didn't get up to go to the bathroom or eat, etc. I just lay there with this overwhelming feeling of doom!
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!
Printer-friendly view of this topic