Well, I've been a member for over seven years and it was about this time seven years ago that treatment began in earnest. The first antibiotic was Zithromax. Then we added Bicillin 1.2 MU X3 per week. Then we changed the Zithromax to Biaxin. The biggest improvement was in the first year but each subsequent year has brought additional gradual improvement. About a year ago I had to cut back on Bicillin for financial reason and became more symptomatic. Once back to X3 per week I got better. Then last fall I stopped the Biaxin due to GI issues and have remained stably asymptomatic. In the last year I've pretty much stopped having occasional "Lyme days." Treatment of chronic Lyme is a marathon not a sprint. Keep at it folks.
Posted by Karen Mc (Member # 23354) on :
Dave, So glad to hear you're doing well.
Thanks for letting us know..It gives the ones of us not doing so well hope.
May God Bless you and keep you well.
Karen Posted by sutherngrl (Member # 16270) on :
Thanks for the update! Its great to hear about other lymies that are getting well. So glad for your success!
Posted by steelbone (Member # 14014) on :
nice work dave
Posted by nefferdun (Member # 20157) on :
It is really encouraging to know that people do get well. Thanks for posting and letting us what worked for you.
Posted by nefferdun (Member # 20157) on :
Did you stay on these antibiotics for the entire time or did you take breaks?
Posted by sammy1 (Member # 12754) on :
how is he well? he is still on abx...not well in my opinion...it's a shame. people need to look into other protocols....like salt c
Posted by nefferdun (Member # 20157) on :
Sammy!, are you well on salt/vitamin C?
Posted by David95928 (Member # 3521) on :
My physican's clinical experience is that few who have had it over a year can go off antibiotics without relapsing. I don't want to chance it since I am doing well. NOw I'm off to the gym. When I return I hope to get the tractor running and go out and burn brush.
Posted by joalo (Member # 12752) on :
Thanks Dave! That is very encouraging.
Posted by lyme in Putnam (Member # 11561) on :
It's nice to know that there is a possibility of getting better. Good health.
Posted by timaca (Member # 6911) on :
IM bicillin 3 times a week???!!! Ouch!! That is one sore behind!! Two times a week was more than I could handle!
Glad you are doing well.
Best, Timaca
Posted by feelfit (Member # 12770) on :
Who the h e l l cares if Dave is still on abx....maintenance abx at that. He feels good, has a life, yay for him!
I would gladly stay on abx forever if it gave me some sort of normal life.
So happy to hear of your SUCCESS Dave and thanks for sharing!
Feelfit
Posted by hopeful4 (Member # 8486) on :
Thanks for sharing your success story! You give us all hope. Have a great life!!
Posted by David95928 (Member # 3521) on :
See, here's the tradeoff. I gave up: disorientation Crushing fatigue Chronic bronchitis Night sweats Paraesthesias Malaise Prostatic hypertrophy Urinary retention Tendon pain Brain fog Insomnia Arthritis ....
And got: A somewhat sore butt, not that bad. It's like background noise.
I'll cope.
Dave
[ 02-21-2010, 11:28 AM: Message edited by: David95928 ]
Posted by seekhelp (Member # 15067) on :
Sign me up for that deal please Dave. Congrats. Most here would probably eat dog s#it if it cured us.
Posted by David95928 (Member # 3521) on :
seekhelp, Love it!!!! Dave
Posted by lymebytes (Member # 11830) on :
Thank you SO MUCH for your post. We need more like this.
I have been thinking about going back to Bicillin since I didn't do it very long and now I think I will for sure.
Bicillin also got my son well.
It helps me to want to keep pushing on.
Thank you so very much Dave! Live life!!
P.S. If wellness was defined "free from abx" then most of us would never get there, come on!! I am with Feelfit on this one! The majority of us will always need a maintenance protocol/open ended treatment to stay well whether it be abx or natural - I can't wait to get to that point!
Posted by Rumigirl (Member # 15091) on :
Dave,
So are you still doing the Biaxin, too? And you just did the 3 different abx over the years?
Did you have any co-infections? And how long did it take to get to this point of feeling well---the 7 years?
Sorry for all the questions. Just curious, because it sounds like such a simple protocol. I'd like to understand it better. Thank you for sharing. Unfortunately, it's true that so many of us do
relapse when off abx. Sigh. But, as you said, if you can have a life this way, well, that sure beats not having one!!!
Posted by sammy1 (Member # 12754) on :
yes i am well and getting better every day without abx...i did it with salt c. you can't be serious that you think staying on abx for the rest of your life is healthy...please tell me you are joking.
glad to hear you are well but what happens if you go off the bicillin?
i am so well that i workout 6 days a week and have never felt better...people need to open their eyes imho and realize abx are maybe not the answer...
Posted by Dekrator48 (Member # 18239) on :
So happy for you Dave!!!!!!!!
Posted by kellyjk4 (Member # 19731) on :
sammy, I hope you don't mean for your posts to come across as harsh as they do.
Why would you bash someone who came on here just to give the rest of us some hope?
Different things work for different people. Salt/C is your answer, but that doesn't mean it's everybody else's answer too.
Dave: thanks for letting us know about the light at the end of the tunnel.
It's funny, my LLMD says the exact same thing: this is a marathon, not a sprint.
Posted by sickpuppy (Member # 23846) on :
That's really great David95928!!! I'm really happy for you and for anyone who can get out and live life again!
Seekhelp, I used to say I'd light myself on fire if I thought it'd cure me but your eating dog poop is MUCh better.
I'm not sure people sick for more than a year always relapse. I don't think we can lay that law down in bedrock. It's not something I want in my head--self fulfilling prophecy.
Posted by David95928 (Member # 3521) on :
Rumigirl, I stopped taking Biaxin and currently am only on Bicillin. It's true that over the years I have only used three antibiotics. I do use other things to help maintain general wellbeing. These are Vitamin B Complex, magnesium, and testosterone. It's my routine and I'm used to it although it can be a hassle and is somewhat expensive.
When I started treatment I was becoming convinced that I was developing early Alzheimer's. I was constantly getting lost, losing my car, driving the wrong way on one way streets, forgetting my phone number, etc... I'm still an airhead but functioning well enough to teach at the graduate level, design and build my own house, write...
My doctor says I'm the highest funtioning Lyme patient he has seen. He had not used Bicillin before I came along and it was my suggestion. Interestingly, despite telling other patients how well I have done on it, he has had few if any takers.
Posted by Haley (Member # 22008) on :
Dave, have you ever taken Flagyl or something to address the cyst form of Lyme?
Have you ever treated for co-infections?
If not, some might say this is why you need to continue on abx. Others may think that's hogwash.
I really don't know and I can't believe I just used the expression hogwash :0
Posted by Lymetoo (Member # 743) on :
Cool!
Did you post this in our Success Stories?? It's over in General Support.
Posted by CherylSue (Member # 13077) on :
Thanks for sharing your story! Best of luck to you.
CherylSue
Posted by annxyzz (Member # 20404) on :
I do not want to sound negative, but after three years of ABX , I could not see them as a realistic longterm option. ( They did help however and ended my pain ) . The yeast problems NEVER end, and on top of that ABX resistance is REAL. When I get bronchitis, the old ABX do nothing anymore. That is scary . Add on top of that kidney / bladder problems, and the picture is even more challenging . You are fortunate that all of these years of ABX have not left you with other problems. I felt I would compromise my health if taken much longer , have switched to herbs and will start rife .
Posted by psr1 (Member # 22957) on :
annxyzz : Are you well? If so, how did you do it?
Posted by f13girl (Member # 23844) on :
David- have you had any issues with candida etc with bicillin shots for so long? Or because they are shots no issue with GI issues?
Were all you issues cognitive.. did you have any neuro-muscle issues?
Posted by David95928 (Member # 3521) on :
I had prette much all of it except swollen joints. No candida. Bicllin is a very narrow spectrum antibiotic and there is no record of Lyme or strep becoming resistant to it.
Posted by annxyzz (Member # 20404) on :
Annxyzz is still struggling , but looking to start rife , and eventually seek help for possible babs when finances permit . I am no longer in pain, and I am no longer constantly in bed. but I still feel fluish and tired 24/7 . I do not have health insurance and have had to rely on herbs ( artimisia annua and coptis/ and some andrographis ) after ending ABX . The ABX caused problems after 3 years that were intensifying for me.
Posted by venus (Member # 16991) on :
Congratualations, and thanks for providing those of us fighting with hope. It means a great deal.
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