posted
I know this is a REAL subjective question, but I wanted to throw this out to the group, and see what everyone thinks...
As some of you know, I was bitten in late July/early August of '07. I was on abx at the time of the bite, due to Acne, and unrelated to Lyme [200 mg. of Doxy]. No rash or other major illnesses at the time, or even afterwards. After a period of time I began to have neuro issues such as muscle twitches, myoclonic jerks, ear/eye issues, sinus, etc.
Being that right before the bite I had a bad UTI and had gotten little sleep, I had been prescribed a muscle relaxant, and was not really getting restful sleep. I attributed my symptoms to chronic fatigue, but went and saw a neuro anyway. He ruled out the typical things such as ALS, MS, etc. He did an EMG, as well as an MRI. Everything was normal.
It wasn't until after, that my girlfriend reminded me of pulling the tick, which started me on the road to pursue Lyme. I went through Igenex to get tested, as well as acquired someone locally who would treat, until such time as I saw a LLMD.
The bottom line is...I've been on abx for 4 months now [first 3 mos taking Biaxin/Doxy, and now just Doxy], but the symptoms haven't gotten worse or better. I've experienced no herxes, yet no worsening of symptoms either. My question involves how long should I continue to pursue Lyme, before giving up on the abx treatment? I don't want to do it prematurely, but I also don't want to remain on high doses of abx for a long period, if it isn't Lyme.
[Sorry for the long post]
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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Sorry, really don't have an answer for you regarding duration of treatment.
I noticed you've been evaluated by a neurologist but how about by an endocrinologist? Hormone issues can cause many of the symptoms that you describe (as can lyme as you know...)
posted
sorry, just read your post a little more closely and somehow glossed over the eye/ear/sinus stuff...yeah, probably not hormonal:)
Posts: 561 | From mass | Registered: Jul 2007
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And 4 months is not a long time on abx, especially if it is lyme. Lyme is a very slow growing bacterium. Most often people are on abx for 18 months minimum. I personally have been on abx for 3 1/2 years along with herbs.
It is also different for every person. Depending on what co-infections you have (sometimes its not just lyme thats bugging you) Also how long you've had the infection. How many strains of Bb you have. How taxed your immune system is or was before the bite, your diet, etc.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Yes, I remember wondering this too when I was four months in. I was thinking since I was pretty well off before I started treatment, that it would be a piece of cake. Not!
Make sure you treat for co-infections, regardless of what the tests show. Lyme and co is a clinical dx still, and a good LLMD knows this. This has been the hardest lesson for me to learn, finally, I found an LLMD who I trust and who just "gets" what is going on with me.
He does not rely on tests.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I am a year into abx. I made gains for the first 3 months and none since. Actually, my neuro pain is getting worse despite treating Lyme, babs, bart with very high doses. Next my LLMD will try IM Bicillin and maybe IV if that fails. I am certainly not going to stay on abx any longer if I don't see improvement in a year and a half. It would make no common or scientific sense. Perhaps explore viruses, but they seem to be at bay.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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posted
Hey everyone. Thanks for the replies. I certainly don't feel like this is going to be a "piece of cake", since it's already been trying, figuring out what's behind these things. I just know that after a certain point, if the symptoms haven't changed, that it's time to try something else. I was sure when I asked, that this is the toughest question to answer. I was just wondering if anyone else had similar circumstances, and what their doctor decided they should do.
As for my Igenex results, my IgM showed IND for bands 23-25, 31, and 41. My IgG test showed positive for band 41, and negative for all others. Overall, the test results were negative per CDC and Igenex standards. I've treated regardless, due to the inexplainable neuro symptoms.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
Hey- I am glad you asked this question b/c this is something I was wondering too. How long do you stay on abx without feeling better? I am puzzled by that too as it seems that you shoudl start to feel better after a few months of pulsing ab's but maybe I am wrong?
Posts: 59 | From stratford, CT | Registered: Feb 2008
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posted
Just to let you know, it took me about 4 - 6 months before I really started feeling better.
But your WB looks like you have been exposed to Bb and it is active in your body (IgM) But tests can be comprimised if you were on abx at the time of testing. Your LLMD should re-test without any abx in your system, and then see what happens.
posted
The four months of antibiotic treatment I've received thus far
has not stemmed the progress of my disease at all.
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Craig
I would think it is time to try/cycle a new combo of abx. For me adding ceftin really made a difference; for my son it was another one, (it is early and I forget which).....
Ask your llmd what you are targeting and based on symptoms what you need to target.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Craig,
Two thoughts. First, you could be dealing with a coinfection and not Lyme. You were on doxy when you were bit,
Second, if it is Lyme it could be resistant to doxy because you were on doxy when you were bit. So you might need another antibiotic.
In general, if you have been on the same antibiotic for over 3 months with no improvement, it would suggest to me you are not on the right antibiotic.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hi everyone. And thanks again for the replies. As for being off of abx, I had taken a 21 day break from the abx, in order to get tested through Igenex. So, I would think that the abx had little bearing on the test results.
As for being on the wrong abx, that could be true. I did notice however, that the Biaxin combined with the Doxy, didn't seem to even improve the symptoms [no worsening though]. I've never used the Biaxin before. I just really need to get ahold of a good LLMD soon. I'm getting treated by a Nurse Practioner that sees Lyme patients, but it was never my intention to solely see her. I merely was using her as a vehicle to acquire treatment, until such time as I could get to someone who specializes in Lyme.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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