posted
I hear ya, I have been at it for almost 5 years. It is mentally and physically exhausting. I'm think two think from your post. One- you are herxing from the bactrim. I herxed from it big time. Bactrim also goes after lyme and I have heard babs too, so you could be herxing from that. I have read posts from people herxing from bart. Do you have a good llmd?
Two- are you still on mepron or malarone? Maybe you need to treat babs longer? Just a suggestion. Hope you feel better soon.
Posts: 323 | From Michigan | Registered: Sep 2006
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
quote:Originally posted by laurie sm: I have ben on multiple orals in the past and 6 months of IV ROcephin,Mepron,malarone.
I feel the worse now than I felt in a long time. Lots of neurological symptoms-neuropathy,brutal headaches, brain fog,dizzy,nauseus.
Your symptoms sound like Babesia. It took me a whole year of Mepron combos to get mine under control. I had no Babs symptoms for 18 months, then relapsed. All my Babs symptoms, plus some brand new ones!
I've been back on Mepron combos for 5 months. Better, but still treating.
Please consider that it may be Babesia blocking your progress. You will herx for it on Bactrim, but most of us need Mepron.
posted
Up thoughts??
Posts: 256 | From long island, new york | Registered: Feb 2008
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Rifampin for Bart almost put me away. Bart herxes are brutal. On zithro Iv I herxed but three doses of rifampin, I made it to day 5 and quit. My bart is deep. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
posted
Bicillin herxes are brutal. You have added Bactrim and are now likely herxing from both. Are you detoxing?? May need to talk to your doc and back off of one or the other for a few days.
My LLMD always said "slow and steady wins this race" Might look into slowing down a bit.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
| IP: Logged |
posted
Forgot to add on my last post. When beginning Bicillin was told to expect 6 months of herxing. Couldn't do it. Had to go to two shots per week for several months and then work up.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
| IP: Logged |
posted
Thanks for all your responses Lymetu Yes- I can't believe he said I wouldn't herx from Bart treatment. Unless I heard him incorrectly which is possible with my brain.
So spoke to doctor and I went down to 2 Bicillin injections a week and he told me to stop the Bactrim.
But how do I know if it was a bactrim side affect or a horrible herx???
My head is still bad today but thankfully a little better.How do I get better from Bartonella if Herxes are too much to handle??
And I really dont think my symptoms ARE Bartonella. This is maddening..
He actually wants to try Cipro next...
Thanks everyone!
L
Posts: 256 | From long island, new york | Registered: Feb 2008
| IP: Logged |
posted
treating for parasites and elimnating gluten and sugar from my diet began the turn around for me. The first most noticable improvement came from elimination of gluten . Thanks to Gael, Boxer Mom,Sammi, GiGi, and many other wonderful people on here I am at 95 percent remission.
Posts: 160 | From Mid-east USA | Registered: Jan 2010
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
At a recent conference Dr. K. stated that treating parasites was FIRST and Lyme SECONDARY. Getting rid of parasites makes it much easier to attack and treat the other infections.
The parasites are protecting and carrying bacteria, viruses, fungi, yeast and heavy metals. GiGi has posted much info on this and the Babushka principal.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It is probably bart and/or babesia causing you so much trouble right now. The bacillin is probably effecting neither one of them.
Dr. B says to suspect bartonella when the neuro symptoms outweigh everything else. Neuro bart symptoms include muscle twitching - the nerves are affected. You feel very irritable with outbursts of rage and disconnected from others.
For me the dizziness, extreme brain dysfunction and headaches was babesia. I also had depression rather than irritation with babesia - a feeling of despair and hopelessness. I did not want to do anything - no motivation.
Bactrim DS can help with bart and somewhat with babesia but you need something much stronger like Mepron/zithro.
I believe it is the bacillin you need to quit, not the bactrim. You should also add in Mepron. You do herx with bartonella and babs. It was very emotional for me.
Do you have extreme fatigue? Do find yourself breathless over the least exertion. Do you sometimes feel you need more oxygen which makes you try to yawn or take a deep breath which is very difficult to get? Do you get hot flashes like you just walked into an oven? These are some babesia symptoms. You have trouble thinking and feel spaced out.
It has been my experience when a drug fails and I do not improve that another infection has taken over. Sometimes I need to change meds because the infection has developed resistance.
It is a mistake to believe you are herxing. Herxing is brief followed by improvement - not on and on with no changes. Perhaps you should get another opinion from another LLMD if this one refuses to adjust your protocol.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I disagree with nefferdun. My experience has not necessarily been herx and then get better. There were some drugs which I continually herxed on. Bicillin being one. It took a long time for improvement. Herxing was not brief!!
I do agree that you should change meds if you see no improvement, however bicillin improvement may not come for some months.
There are many on this board who just cannot tolerate many drugs at once. You may just have to wait a bit before treating co infections. Dosages can always be halved or even quartered.
Once last note, I too did not think my issues were bartonella either. Swore my problems were something else. Wasn't until treating bart that moved signifigantly forward. Good luck to you.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
| 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!
Printer-friendly view of this topic