David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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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 Posts: 423 | From Virginia | Registered: Nov 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Thanks for the update! Its great to hear about other lymies that are getting well. So glad for your success!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It is really encouraging to know that people do get well. Thanks for posting and letting us what worked for you.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Did you stay on these antibiotics for the entire time or did you take breaks?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
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
Posts: 82 | From philadelphia | Registered: Aug 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Sammy!, are you well on salt/vitamin C?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Thanks Dave! That is very encouraging.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
It's nice to know that there is a possibility of getting better. Good health.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
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
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Thanks for sharing your success story! You give us all hope. Have a great life!!
Posts: 873 | From WA | Registered: Dec 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sign me up for that deal please Dave. Congrats. Most here would probably eat dog s#it if it cured us.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
seekhelp, Love it!!!! Dave
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
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!
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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!!!
Posts: 3771 | From around | Registered: Mar 2008
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posted
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...
Posts: 82 | From philadelphia | Registered: Aug 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
So happy for you Dave!!!!!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
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.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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
Posts: 2232 | From USA | Registered: Aug 2009
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Did you post this in our Success Stories?? It's over in General Support.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Thanks for sharing your story! Best of luck to you.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
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 .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
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?
Posts: 200 | From New England | Registered: Dec 2009
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
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.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Congratualations, and thanks for providing those of us fighting with hope. It means a great deal.
kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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