posted
inspired by Jon A's post tired of side effects and wanting my life back
I went off all of my antibiotics the other day
lo and behold
no symptoms at all i feel WONDERFUL
went to the gym. no dizziness. no headache. no painful glands.
it may not last but after a year of ABX I am just DONE and need to move on.
i know i may be setting myself up for a relapse. BUT
i felt like i was in a catch 22 - LLMD was waiting for me to be symptom-free, but if the symptoms are side effects, that would never happen. i'd just make him rich!
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Keep us posted weekly on if you can on how you are doing. I am considering using rife instead of antibiotics, but am not quite at that point yet.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
When I do my time, I will do the same - be off drugs.
But I plan to take antibiotics for two months every year after. If I herx I will know that I have it and have to stay on them forever (perhaps pulsing will become my option).
If not, that will likely keep me healthy longer.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Hi Art, Just wanted to let you know that I've been through the same situation as you and I can completely understand your frustration. I was on abx this summer and into the fall and felt awful almost the entire time that I was taking them with increased symptoms and constant fear of what was happening to my body.
I was having such excruciating pain in the back of my head and in my arm that I finally stopped everything because my husband feared that the abx were creating side effects and I could get no support from any doctors.
Now a few months after stopping abx I can't say that I feel 100% better-I still have the same aches and pains but not to the degree that I had when I was taking the abx. I have been waiting to feel "good" again and like my old self but that hasn't happened either.
It's so unfortunate that we have to wait until our bodies go completely haywire for anyone to listen...I have Igenex test results that say that I'm positive for lyme but no one finds them credible so I wait until the next symptom arises and then maybe someone will take me seriously.
I'm sorry that I can't give you more advice, but I can tell you that I understand and I'd love to keep in touch and hear how you're doing.
Take care!
Posts: 90 | From NJ USA | Registered: Jul 2004
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artbyjessie2
Unregistered
posted
hi everyone well it's only day 2 but so far i feel just absolutely fabulous! i'm on cloud nine w/out the headaches, blurry vision, and dizziness.
i exercised for 45 mins for the past 2 days and was able to stay up til 11pm and even wake up before the alarm.
i am sure something will burst my bubble but i am enjoying my reprieve :=)))
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Im just buzzing in again to mention something.
if YOU HAVE gained ANY weight from lyme disease- remember this- toxins are stored in fat cells
when you shed the weight, you MAY experience very lyme like symptoms, all over again.
Its horrible and livid to go through and it CAN feel like a relapse.
Make sure you keep detoxing, or mark my word- you arent going to feel too pretty come soon.
Maybe ya will though.
Were you on doxy by any chance? I felt like ABSOLUTE crap the entire time on that, and I mean ENTIRE TIME on it ( 3 straight months) and as soon as I quit, I felt like a million bucks.
Unfortunately, I ended BACK on abx, took them for another 5 months, and just stopped abx four months ago AGAIN only to relapse
( or not relapse, but have ) undiscovered bartonella rear its ugly head.
ALOT of lyme patients go off abx, think they have relapsed, go back on and the whole cycle starts over again.
Some patients really do relapse!
Wish you the absolute best.
Have fun feeling fabulous
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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artbyjessie2
Unregistered
posted
hey Crime, et al i never gained weight, thank god. maybe 1 or 2lbs. I'm a small girl to begin with and i was really aware of eating less because i was working out less.
i was on Zithromax, Cefzil and Mepron, though I had stopped taking the Mepron.
The difficult thing to figure is what is from lyme and what is just wear & tear on my body. I did Triathlons, swimming races, ran for 9 years, took martial arts. I think ANY body would have joint pains after all that!
I know i am taking a huge risk, but I'm just ready and i've always liked livign on the edge anyway
posted
This break of feeling great after abx is typical and it usually lasted about 7 days for me.
Posts: 373 | From Southern California | Registered: Jun 2003
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posted
Maybe pulsing abx is not such a bad idea?
Posts: 702 | From NY | Registered: Jul 2004
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liz28
Unregistered
posted
FYI--I found that a very low dose of minocycline, 25-50mg per day, is enough to keep my Lyme symptoms from becoming full blown, and artemisinin, though not a cure, is enough to keep my babesia from becoming overwhelming. At doses like this, one month's mino prescription can last three or four months.
So if you find your symptoms sneaking back, there may be ways to make sure they don't stop you in your tracks, until you find a good doctor.
posted
still feeling wonderful! day 5 :-)) am going out for the first time and having a few drinks with my friends. ok, maybe one drink. will post on Monday to see if my 5-day hangover is in effect!
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
I really hope things continue to feel great for you. I would love to go off abx. I did go off after about 9 months. I was simply fed up and not getting better. I stayed off for about 4 months. During that time I had to clear up a very bad systemic Candida infection. But, I continued to get sicker and sicker. When I could not move my legs to get out of bed, I called my Dr. and we agreed to start treating for co-infections. Since doing that, I am improving.
It sounds like you hit the co-infections straight away. I think that makes a big difference.
Hope things continue to improve for you. Keep us posted.
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