I am into my eighth month of antibiotics with no improvement. My LLMD has me taking 600 mg. Rifampin, 400 mg. Doxy, and pulsing 500 mg of Zith. (I've been on the Doxy/Rifampin for 3 months--added the Zith over the past 6 weeks.)
I woke up this morning and my left arm is hurting more than ever. Other symptoms are basically the same (tingling, fatigue, weakness, etc.)
I'm wondering if anyone has gotten better--but saw no improvement by the eighth month.
It's hard to know if I'm on the right track or not. Should I continue the antibiotics?
Will it take this long to heal because I've had Lyme over 20 years?
I'm also on an elimination diet, along with a variety of supplements. My recent retest of allergy symptoms showed less reactivity to a variety of foods. This is basically the only indication of some sort of progress.
Any thoughts?
Tom
Posted by Hiawatha922 (Member # 10796) on :
PS - I tested negative for coinfections but my LLMD has been treating me for Bart, based on clinical observations (since November).
Posted by CaliforniaLyme (Member # 7136) on :
YES YES YES!!! ME ME ME()!*)!*!))! ME*!)*!)! I was on abx for 18 months before I turned. One year of orals, 6 months of IV and then BOOM!!(*)! zero- to 95% in 3 months, added Mepron got to 99%, added Cirpo & got to 100%!!!!!!!!!!!!!!!! My story is here if ever bored enough to read it: http://www.lymeneteurope.org/forum/viewtopic.php?f=10&t=157 Take care&*)!! & HANG IN THERE! Best wishes, Sarah
Posted by Peacesoul (Member # 13709) on :
Sarah, you were treated soon after infection right?
Posted by TerryK (Member # 8552) on :
Yes, I was sicker after the first nine months of treatment. As far as we can tell it is because we were killing lots of bugs but I was having difficulty getting rid of the dead bug debri.
After 20 months I'm better in some ways, worse in others. I had to go off abx for a few weeks 2X's due to elevated liver enzymes. The 2nd time off, some arm pain that I'd had for several years disappeared!!!
I hadn't been able to use my arm to get things out of the cupboard for years and suddenly the pain was gone. I think this occurred because my body had time to clear out old debri and I wasn't making new debri by killing more bugs. I also had some major tissue changes in my arm. A big hard, swollen area in my upper arms is much better.
I think each of us is different in number of infections, body environment, immune system, genetics, pathogen load etc so I don't think you can go by anyone else as far figuring out how long it will take to get better but in general, for those of us who have been infected a long time, it seems like it can take quite a long time to notice the big improvements. I also think that we have to get the right medication for our particular strain or set of infections which can take some time to figure out.
It helps to keep good records of your symptoms so that you can remember even minor improvements. I know it's hard due to the cyclic nature of our symptoms but I can see a trend in myself of a consistent lessening of some symptoms.
If you haven't already, you may want to consider that heavy metals might be hindering your progress. Search here for the study on Borrelia and mice and immune system - talks about length of time it takes to clear borrelia with non-toxic levels of mercury compared to no mercury.
Also, consider that infections that are not co-infections could be complicating your conditions. Consider looking at viruses, fungal infections or parasitic infections. It seems that it is not unusual for some of us to have multiple pathogens in the picture since an immunes system that is depressed by lyme disease can invite lots of infections to take up residency.
I started valtrex recently for viruses and do think that it is making some difference. I have high IgG HHV-6 and EBV titres so perhaps that is someting you can consider with your doctor.
Look at biotoxins and other detox methods including drainage remedies.
I'm not a doctor, just offering suggestions.
Terry
Posted by Clarissa (Member # 4715) on :
I agree with Terry, you may need to review the biotoxin website:
If you're not getting better, it could be SO many things. Sometimes it just takes a long time but if you have the biotoxin gene, then you are NOT de-toxing naturally and the toxins are just re-circulating back into your bloodstream, keeping you sick.
Check it out!
Posted by Tickn (Member # 11590) on :
I have been on abx's for almost a year now. It took 7 months of worse monthly symptoms before I began to turn the corner. For the first time in over 10 years I am finally able to work through my monthly cycle. I still have quite a ways to go since I was'nt dx'd for over 20years,Slow but steady. Take Care, Ken
Posted by Andie333 (Member # 7370) on :
I started on oral abx and really tanked. About 7 months later, I had a lot of new symptoms emerge--tics, seizures, numbness in new parts of my body.
My LLMD added rifampin for bart, and that really seemed to help. But it wasn't automatic. It took a about 16 months before I thought I might be able to get out from under all this. Even then, I doubted I'd ever be able to live a productive life (ie work fulltime).
I've now been on oral abx for 2.5 years. I am employed fulltime and have been for awhile. I'm not where Sarah is in my recovery--100%--but most days I'm at about 85%.
I've successfully cut back the ceftin, but I haven't gone off it--not by a long shot. And I'm still treating with vitamins, herbs and chinese meds acdjunctively.
I was told I needed to be patient and just trust that I'd get better in time. So that's what I did.
I know how frustrating it can be; most of us can relate!
Andie
Posted by Hiawatha922 (Member # 10796) on :
Thank you for all of your responses. I have an appointment with my LLMD on Thursday. I plan to continue treatment at this point, based upon my doctor's recommendation--I appreciate everyone's input.