posted
I'm closing in on 6 months of treatment now .. with a 5 week break after the 3rd month .. and the only thing i've taken away from any of it is that i felt my best when i wasn't taking ANYTHING.
I continued to improve over my 5 week break until fear drove me back to another LLMD. Once beginning lyme/babs treatment i rapidly declined.
So im going with my heart on this one .. no more meds for me until i'm convinced that i'm getting worse without them.
I "feel like crap" other than that, i have no symptoms that would point toward lyme and away from drug toxicity/over medication. I'll keep you folks updated.
Posts: 339 | From Outer Space | Registered: Aug 2009
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quote:Originally posted by Lymetoo: I never felt "better" while on abx. Doesn't mean they didn't work though.
Good luck.
At all? how would you have any idea if they were working? When would you know when enough is enough?
Posts: 339 | From Outer Space | Registered: Aug 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I felt crappy on antibiotics for the first year and a half. Don't know if it was constant die off or too high of doses; but once I started low dose doxy, I started to feel much better. I've been on low dose doxy for about a year and a half.
It has also helped to get my vitamin D up very high. I am on doxy and prescription D. These two things have helped me the most.
Maybe you just need to modify rather than completely stop all meds. And make sure that your Vit D level stays up around 100.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
What do you mean by crappy? When i feel "crappy" I mean i can't go to work .. i can't leave bed except to use the bathroom.
The last month i was on antibiotics i was only able to go to work 5 days out of 20.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
Well, it took 18 mo to 2 yrs before I felt I was getting somewhere. I had Lyme for 42 yrs before beginning treatment.
Then I began feeling better.. but never really liked being on the abx!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Crappy for me was barely being able to function. No way I could work; and feeling like I possibly would die most days. My doc said that ppl with LD feel as bad as ppl with late stage AIDS. That was how I felt.
I would say that 6 months of lyme treatment was just a drop in the bucket. From my observation over the years, most ppl start to feel better anywhere from a year and a half to 3 years of treatment, with average treatment lasting 2 to 5 years.
I would never give up after only 6 months. Maybe take a short break and start again.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I'd have to respectfully disagree. I live in a very endemic area. I easily know 20-30 people, including 3 family members who have had lyme disease. Not one of them have exceeded 30 days of treatment, and not ONE of them has relapsed last i checked.
I'm not saying that certain cases don't require such treatment, i just don't believe it's the majority by any stretch.
Posts: 339 | From Outer Space | Registered: Aug 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
If you catch LD early, and maybe you and these others were lucky enough to catch it within the first month of infection; then I believe 30 days could cure LD. I guess I am thinking "chronic" Lyme. In the case of chronic lyme 30 days will not cure it. Not even close.
If you caught it early then maybe you are cured. In that case stop antibiotics and see where it takes you. I wish you the best!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Over 2 yrs of antibiotics and never felt better, maybe even worse.
Right now I'm taking Amox, and started feeling better. At the same time he increased my Vit D and I added K2. Now I'm thinking that's what has made me feel better, not the amox.
Posts: 847 | From upstateNY | Registered: Dec 2007
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quote:Originally posted by keltyl: Over 2 yrs of antibiotics and never felt better, maybe even worse.
Thing is i DID feel better. After 1 month of ABX i was 100% .. but i took my llmd's advice and continued treatment .. i began to slowly backslide. But it is worth noting that the symptoms i developed during this backslide (and continue to have) were never my original symptoms at all.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
My worst symptom has always been fatigue. Then cognitive and joint pain. Also have severe insomnia. What other symtoms would you have?
Posts: 847 | From upstateNY | Registered: Dec 2007
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quote:Originally posted by keltyl: My worst symptom has always been fatigue. Then cognitive and joint pain. Also have severe insomnia. What other symtoms would you have?
I just know what i felt like before treatment .. and that feeling has been long gone .. what i'm dealing with now is something i never felt until i started heavy abx.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
sutherngrl--how much doxy are you on? our PCP gave our son 100mg doxy once a day. We started 6 days ago. Tick was removed 8 weeks ago.
I pushed him to 200 mg a day on Monday and he started feeling really bad on Wed. Flu like symptoms and was in bed all day Wed & today. Only tonight did he get up. I didn't give him his daytime dose today, but 100mg tonight.
I had heard of HERXing and was nervous b/c he complained about his heart last night for the first time.
the 3030club--I am glad you caught your LD early. the ABX make our son feel worse too as I mentioned before, but we can't get into a LLMD until December, so I have to go with what the PCP gives me in the meantime. Our son has extreme fatigue, cognitive fog, and hip joint pain, afternoon low grade fever, and drenching sweats after daytime sleep. Our son missed school the entire week this week. Last week 2 1/2 days. Are supplements helping you?
Posts: 54 | From Texas | Registered: Oct 2010
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posted
you would need to list the symptoms you are experiencing from the antibiotics..
if you were having a reaction form the antibiotics it would have started in before the first month.
on the other hand a herx re-action from lyme dye off may start after 3-4 weeks of antibiotic treatment.
you would have felt the adverse re-action in the first couple of days not a month into it.
it would help also if you could describe your symptoms.
I had chest pains and pain down my arm and leg originally
but after treating with antibiotics the Brain Fog and Being totally exhausted with muscle twitching didnt start until 3 weeks in... this is a normal re-action to the dye off..
like the others have said if you did not catch it in the first month 30 days does nothing to touch it... which is why you felt no different in the first 30 days
good luck with your treatment and I hope you feel better
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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posted
I think you may have got better, and maybe antibiotics caused yeast infection (candida).
Have you thought about just treating candida (Diflucan)? It may be your answer.
I believe that those who do not ever feel better probably either have immune problems on top of Lyme (XMRV), or don't have Lyme Disease. Perhaps they have another infection that triggers CFS.
I do think some strains may be much more resistant than others,, and perhaps B31 is easier to treat.
I felt so bad on antibiotics that I couldn't even tolerate a small dose of Doxycycline at first. Things have changed for the better.
Getting off antibiotics may be a good idea for you. Perhaps you will begin to feel like yourself (I truly hope so). Best of luck.
And to those who say abx can't cause side effects after several months, that's just plain wrong.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by the3030club: I'd have to respectfully disagree. I live in a very endemic area. I easily know 20-30 people, including 3 family members who have had lyme disease. Not one of them have exceeded 30 days of treatment, and not ONE of them has relapsed last i checked.
I'm not saying that certain cases don't require such treatment, i just don't believe it's the majority by any stretch.
You certainly do live in an endemic area, as do I. The Hudson Valley region of New York State is among the most tick-infested areas in the country.
EVERYONE I know in my area who has contracted Lyme/cos became very ill. Based on my personal experiences and interaction with others who are ill, I certainly do believe that the majority of patients require a heck of a lot more than the what the IDSA guidelines indicate (not to mention treatment for coinfections).
Apparently your family members and acquaintances coincidentally have exceptionally strong immune systems that are able to successfully fight Lyme/cos. God Bless.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Texanmom - Have your son tested for babesios .. i had it along with lyme wheni was first infected. It can be the cause of the high fever, and drenching sweats.
In many cases people can beat Babesia (as did i) without medication, but mine came on quick, before the lyme had a chance to really do anything.
The doxy will cover a lot of the possible infections, but babesia isn't one of them. Should be tested.
Posts: 339 | From Outer Space | Registered: Aug 2009
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