posted
I started abx treatment a few weeks ago...for the second time in one year. The first was from my ducktor for 2 months on doxy. Now from my llnd I am taking 400mg doxy & 500mg zithro. Also teasel and her herbal lyme support formula.
I don't feel better and I don't feel worse. I feel very complacent about this disease right now.
It's been really hard taking the abx and my llnd wants me to up the doxy to 600mg a day along with the zithro.
My gut feels queezy often from all the drugs I take...plaquinil, diclofenac....ugg I take protonics AND probiotics (enteric caps)for the gut and intestine.
I keep trying to convince her that it's not lyme...she says, I need to get over it...it's lyme. I feel like a recording asking this question over and over again in different ways, but it's always the same question...Is it really lyme? Duh!
I don't want this disease!! (who does?) so I keep trying to figure out that maybe something else is happening to my body. Maybe those 2 separate western blot tests I had 12 months apart from each other that are both CDC positive, might be a mistake.
You know what? I really don't feel half bad. I can work a little (part time about 2x a week) and I can do some chores around the house and get around town. I even went to an outlet mall with my friend yesterday and walked around for almost 3 hours without fatigue....I can still gig with my part time band a couple times a month...
My question though...if I've been sick since 1993, can these abx really help? Can chronic lyme really be treated after so long w/o treatment? Am I spinning my wheels?
thanks
-------------------- The Lord is my strength and my song
CDC/Igenex- Positive IGG 31+/- 34+/- 41++ IGM 23-25+++ 31+ 34+/- 39+/- 41+ Posts: 50 | From San Diego | Registered: Nov 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I sure hope the answer is YES!!!! So many of us are in the same boat. If it was not possible to get well, I don't think that our doctors would bother to treat us.
Once you choose hope, anything is possible.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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ByronSBell 2007
Unregistered
posted
Chronic lyme can be treated with ABX most of us here have chronic lyme. Many have gone into remission, they just go on about their normal lives once they get there and you don't hear from them.
I would say you have lyme, no doubt. You are positive for it on 2 different tests and sounds like it is making you herx.
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adamm
Unregistered
posted
you definitely have Lyme, and abx are what most people start out taking. They are almost never enough by themselves, though.
posted
600mg of doxy is pretty hard for anyone's stomach to take. I do hope you are taking it with plenty of food and are not lying down for at least an hour after taking it.
Most take 400mg of doxy per day, with other meds.
Yes, you have Lyme. And Yes, it can be "cured" with long term abx. Do NOT give up too early!!
I was dxd in 2000 after 42 yrs of having Lyme untreated. I took abx for 4 yrs and am now doing fine without abx.
Hang in there!!
PS... are you taking probiotics?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
You can be CDC positive with no specific bands for borrelia. Which bands were positive?
beb wrote: My question though...if I've been sick since 1993, can these abx really help? Can chronic lyme really be treated after so long w/o treatment?
Absolutely! I've been sick for decades - much longer than since 1993. I've had improvement in many symptoms with treatment. I feel like I've literally been pulled back from the jaws of death.
If you do have lyme disease and it goes untreated, you will likely get worse as time goes on.
I'm a little surprised that you've had no response at all to treatment. No herxes? No improvements?
Have you had blood levels of doxy done? 600 mg seems like a lot. If it were me, I'd want to know if I'm already up to a theraputic dose before increasing. Perhaps your doctor can check with other ILADS docs to find out what they consider a theraputic dose?
Just a reminder that you shouldn't drink milk with doxy as it will greatly reduce effectiveness. Also, if your stomach is getting upset you can eat with it. Are you taking a good quality probiotic?
Have you been tested or treated for co-infections?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I have been tested for co-infections and they are indeterminate so my llnd say probably have bart and boreila.
I stand corrected on the doxy...she wants me to take 400mg doxy and 500 zithro. I don't know where I got the 600 doxy from...my brain is mush sometimes and I say and do things that I thought I heard or i think I say..(did I just make sense to anyone???) You all probably know what I mean cause you all speak "lymese"
-------------------- The Lord is my strength and my song
CDC/Igenex- Positive IGG 31+/- 34+/- 41++ IGM 23-25+++ 31+ 34+/- 39+/- 41+ Posts: 50 | From San Diego | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes it can be cured with antibiotics but it can sometimes take several years to get there. Don't be in denial, just do what you have to do to get rid of this stuff. Since you don't feel too bad, maybe you will be one of the lucky ones that gets well within 6 months to a year.
I know it is all hard to swallow, but hang in there. You are not alone!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for listing the bands. I'm told 39 is highly specific for borrelia but you have others that are specific as well. IGeneX positive means that you are positive for lyme in my non-professional opinion since I beleive thier criteria is much more accurate than the CDC's.
Herxing would indicate that you are on the right track. Symptoms seem less likely to be related to the drugs themselves since they are cyclic.
It can take years in treatment for some of us and I really think that co-infections can hold up progess. Also, IV may be needed for some people to get signficant improvement.
Other infections besides co-infections may need to be addressed in those of us who have been sick for a long time. Parasites and viruses come to mind.
Keeping a good diary of your symptoms so you can tell even small improvements is helpful. I've found that my improvements come and go in a cyclic fashion, similar to the way they appeared.
After almost 3 years of treatment, my body pain is down by 60% and instead of being all over, constant horrific pain, it now travels around and is much less severe. So much easier to live with. Many other improvements too. I used to think about the worth of living a life with such awful symptoms almost everyday and now I don't.
Hang in there and give it a chance to work.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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