Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
In may of this year it will have been 11 years since I was diagnosed with Lyme Disease. Since that time I've had 3 courses of IV antibiotics, primarily IV Rocephin and IV Zithromax via 3 different peripheral interior cardiac catheters. I've been on Penicillin G injections for about 8 months, around 60 different times I had to stick myself or have someone stick me with an inch and a half long needle. I've been on over 20 different types of oral medications including augmentin, amoxicillin, biaxin, bactrim, ceftin, cefzil, clindamycin, ciproflaxin, doxycycline, levaquin, minocycline, tetracycline, and a lot more I forget. I have been re-infected with Lyme at least twice(there is no way that you can find a tick and 3 weeks later you're in horrible shape without it being related). My area is endemic with Lyme, my mother has it, 4 neighbors have it, several dogs have it, and that is just within a 1 block radius. I have a co-infection as well called babesiosis which is a protozoal infection similar to malaria and I've been treated for that off and on for 2 years now.
I'm kinda at the point where I don't know what to do, I have less pain right now then I have in the past, but that's because of the vicoprofen I take 1-4x a day. My knees are still bad, my memory is still shot, I still get the standard Lyme symptoms and on top of that I have chronic fatigue syndrome. I just can't tell what problem is cause what symptoms and to be honest I'm at wits end anymore. The last time I stopped medications I got better for 3-4 months after and then all of a sudden everything got a LOT worse, to the point where I lost ground by going off the meds.
Does anyone have any suggestions?
I'm kinda at the point where I don't know what to do, I have less pain right now then I have in the past, but that's because of the vicoprofen I take 1-4x a day. My knees are still bad, my memory is still shot, I still get the standard Lyme symptoms and on top of that I have chronic fatigue syndrome. I just can't tell what problem is cause what symptoms and to be honest I'm at wits end anymore. The last time I stopped medications I got better for 3-4 months after and then all of a sudden everything got a LOT worse, to the point where I lost ground by going off the meds.
Does anyone have any suggestions?
2. Are you taking anything to pull toxins out of your body? It sounds like recirculating toxins could be an issue. Something like Modifilan or Cholestyramine?
I too tried dozens of oral antibiotics and finally was put on bicillin injections. I received them 4x a week for 8 months and the last three months, I ate the raw diet.
It wasn't until I stopped the bicillin that I realized I was actually cured and that a lot of the lasting symptoms were related to the antibiotics, which were making me extremely tired and overrun.
Anyway, I know how easy it is to think you will never see the end of this but you will. I promise. I have a friend who went to India to receive stem-cell treatment and that cured her, I have another friend who cured her lyme with naturopathic medicine. For me, it was the bicillin and I really think the raw food diet gave a jump start to my system that it really needed.
I'm so sorry you've been sick for this long. I can put you in touch with my friend who went to India, her story is amazing.
They have two new drugs out for Babs, one is Coartem and the other is A-BAB. I don't know much about them but I will soon as my son will try Coartem this week. Are you still on antibiotics? If so, what?
Keep in touch and let me know how you are feeling
Kerry
I dont want to keep taking all of these meds when thewy are not doing one dang bit of good. It is really hard to really get a grip on this disease because there is so much info, very hard to understand info too when your brain isnt functioning right anyway!! i read and reread and take notes and still everything i find that I think might help my LLMD brushes it aside. i have been to 3 LLMD this being my 3rd. I think my 4th is going to be the GREATEST physician there ever was and put it in his hand JESUS. At least to me. So you are definately NOY ALONE. I wish you much luck.