2 years off consistent antibiotics and doing very well...

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violets
Veteran Member


Date Joined May 2006
Total Posts : 878
   Posted 1/3/2009 6:26 AM (GMT -6)   
Hi everyone,
 
I haven't posted for some time although I visit and read posts. 
  
I am very well now, 2 years after stopping consistent antibiotics.  It was a slow process. I was on consistent antibiotics 7 months. After stopping consistent antibiotics I pulsed antibiotics several times along with chinese herbs and eventually even weaned off that.  I also believe exercise played a significant role in my getting better along with avoiding all unnecessary drugs. 
 
So you can get well...hang in there.
 


 
 

Post Edited (violets) : 1/4/2009 5:46:51 PM (GMT-7)


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 1/3/2009 8:16 AM (GMT -6)   
Congratulations. I am so happy to hear your story. I know that in the depths of LD it is hard to hear a "success story". But I'm on the verge of climbing out of my LD illness and so your story is very encouraging. Please keep posting and update us on your success.

All the best!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 1/3/2009 8:57 AM (GMT -6)   
Violets,
Thanks for posting your encouraging recovery. I'm glad to hear that you are continuing to experience good health 2 years post abx as well as you commitment to work towards needed change re. Lyme disease. It's important for people on this board to know that there can be recovery and health again! Each person has their own way of getting there yet a common thread is a good LLMD.

I am now 2+ months off all abx after a year of treatment for disseminated Lyme treated 3 months after tick bite. I did the initial 6 weeks of Doxy (a little beyond the traditional IDSA guidelines for tx) and then relapsed about a month later. Then got to a good LLMD a couple months after my relapse, was tested for coinfections and treated for 7 months with aggressive oral abx and antimalials for LD and Babesia. I focus now on building my system up with a good diet, supplements and a daily dose of samento as well as exercise and sufficient sleep. I'm doing well....worry on a day of fatigue or aches if the lyme is coming back yet it seems transient and then I remember that I was shoveling snow and that's probably why my arms ached a little for a day! I think I"ll be wondering and watching for a while yet feel this time of building my system at this point without abx is continuing the healing process.

I even remembered a tick filled with blood crawling on my thigh and when I flicked it, it burst with blood. MY PCP only gave me the elyssa and assertively left messages for me that my lyme test was "NEGATIVE". I didn't feel I could go back to her so sought out a local naturopath who I knew would give me the Igenex test. Hence 3 months passed with progressively worse symptoms of disseminated lyme before getting tx. I'm grateful to be feeling well again.

After I got lyme, I had my husband get tested who has been dealing with Chronic Fatigue/ immune system problems for 20 years and turned out that he has had lyme all these years. He immediately herxed with doxy and is now on IV rocephin. Almost a year into his lyme disease treatment, he has quite a ways to go.

I am also committed to working on social change re. Lyme. The IDSA guidelines contribute to treatment failure and chronic disabling illness. Too many PCP's and docs are uneducated about lyme, dismiss the diagnosis and use the outdated IDSA protocols. Insurance companies use these protocols to refuse coverage for long term abx or IV- contributing to medical bankruptcy and disability.

Happy New Year to everyone and lets hope that 2009 brings lots of positive changes.

lillimul

lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 1/3/2009 9:01 AM (GMT -6)   
p.s Violet-

congrats again to you and wish you luck in your run up Mount Washington! Hope you set that record for your age group!

lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 1/3/2009 10:30 AM (GMT -6)   
jelainep- glad to hear that you are beginning to climb out and feel better

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 1/3/2009 10:39 AM (GMT -6)   
Thank you!

Using antibiotics is clearly a source of controversy in the medical community.

Question:

1. How long were you on antibiotics?

2. How did you work with your doctor to wean yourself from them?

3. What were you on?


I appreciate your coming back here.

P.S.

What damage did the antibiotics cause?

vs.

What damage did the Lyme cause?

Thanks again

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/3/2009 11:24 AM (GMT -6)   
Thank you for posting your story. I was on abx for over 4 months before going on Chinese herbs for 6 months. When I felt symptoms coming (particularly dizziness and fatigue) I used Ketek - the first time for two weeks and the second time for one week. Then the symptoms started becoming worse including bad insomnia. I quit the herbs to see what would happen and I was able to sleep. So I decided I needed another type of herbal regimen and went to a homeopathic doctor who gave me cat's claw and huge amounts of vitamin C. My symptoms got worse and I didn't think I was herxing, so I started some of my "leftover" doxycycline. I have been on doxy for about 2 weeks. My symtoms of muslce spams, pins and needles, depression, headache, brain fog, cramps, muslce pain and stiff joints is diminishing. I can tell that the doxy is killing off what was starting to build up in me again. I have Samento in the closet and will start that when I decide I have had enough of the doxy. I am equally afraid of herbs as I am of abx. It is difficult to know if the herbs are working as I do not know when I get symptoms if I am herxing or relapsing - and it seems in the past I was relapsing which is dangerous to ignore.

Please go into more detail about the herbs that you took - I assume Zhang but which ones of those- and the abx you used, how frequent and how long etc. Some people use herbs but pulse an abx once a month. What kind of bad side effects did you have from abx? Do you continue to eat extremely healthy food and exercise regularly? Please pass along what has helped you the most. Thanks.

CherylSue
Regular Member


Date Joined Jul 2007
Total Posts : 211
   Posted 1/10/2009 4:18 PM (GMT -6)   
Thanks, Violets, for sharing your success story. The best of luck to you!

CherylSue


Nefferdun,

Herbs didn't help me. I had the most relief from abx after I saw an LLMD. I was pulsing Flagyl (twice weekly on low doses after 10 months of various abx) and relapsed after the busy holidays. I'm back on my favorite abx doxycyline.

Good luck to you.

CherylSue

Lymebean
Regular Member


Date Joined Nov 2007
Total Posts : 267
   Posted 1/10/2009 11:09 PM (GMT -6)   

HopeingtoFindaCure:

There really is no controversy about the use of antibiotics on this board! If you do not know the diiference between the deadly effects of Lyme versus the risks of taking antibiotics long term, then you do not have a very serious case of lyme disease. If you have brain fog all the time then you are getting brain damage. This is a deadly serious illness and I am here to tell you that the use or no use of antibiotics is a choice, but it is never a bad choice. Sorry to be so pointed, but I think we are beyond that thought on this board. If you are still contemplating taking antibiotics you should just ake them and see what happens. You might just feel better.   

 


SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/11/2009 8:08 AM (GMT -6)   
violets said...


I am very well now, 2 years after stopping consistent antibiotics.


Hi, glade to hear you are well! Can you please tell us what specific antibiotics you were on and what dosage?

Thanks!
Eric

Maureen21
Veteran Member


Date Joined Apr 2007
Total Posts : 1599
   Posted 1/11/2009 9:45 AM (GMT -6)   
Eric,

Not that I am trying to speak for Violets, but I am pretty sure that she took biaxin/plaquenil and then pulsed tetracycline when she was weaning herself off abx. I know she did herbs too afterwards, but not sure what. I am also not sure of her dosages. I am sure she will post about them. I did biaxin/plaquenil too and I feel it is a very effective combo.
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