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How aggressive should treatment be?

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Posted 11/9/2014 10:12 PM (GMT 0)
I wonder if my LLMD is just not aggressive enough. 200 mg doxy and 1000 mgs flagyl. I found this old thread on HW about IV rocephin.

...........
"I just started a week ago! We can be IV buddies. The key thing for me is that I am also on about 5 other antibiotics. My LLD is very aggressive and is adamant that if you don't hit Lyme and co's all at once, you will never get well.

I believe her. I'm feeling better every day, and I can't believe it."
Posted 11/9/2014 10:52 PM (GMT 0)
Many LLMD's have adopted a "low and slow" approach. The idea is to, in a way, herd the bacteria and then lure them out and then kill them. Going at it too aggressively only serves to make the patient very, very ill and drives the bacteria into deep hiding; making it much harder to reach them.

For some people, however, IV abx is the just the thing to get results. The risks of infection from the port is an acceptable risk, in those cases. IV abx would have killed me but for my neighbor, it was the only thing that worked.

Why we can't get mainstream treatment is that there is no one way to treat this disease. It has to be a dialogue between the patient and the LLMD: treatment has to be designed as they go along.

So, if you feel that you aren't making progress, talk with your doctor and agree on a new tack. If you doctor doesn't want to talk or listen, then find a new doctor.
Posted 11/9/2014 11:44 PM (GMT 0)
Actually there are documented lyme deaths from people that got too aggressive with treatment and had a severe herx reaction that killed them. For example one lady had lyme for years, finally got a diagnosis, and was put on IV abtibiotics... She died from the herx!!!

Just trust you will get better. 3-6 months is usually the minimum time to start feeling better. It took me 3 months to feel noticeably better.

Keep at it! Don't give up, and believe you will get better.
Posted 11/10/2014 12:09 AM (GMT 0)
Okay, now THAT is really scary. I never heard of someone dying from a herx. I can understand why some docs want to told if someone is herxing too hard or too long. I'm coming toward the end my third month on abx and taking nystatin and plaquenil for about 1 month. I had a good week somewhere in the middle of my second month of abx and foolishly thought that maybe I was turning a corner. HA! Right now I'm hoping to feel a little better by 6 months.
Posted 11/10/2014 12:11 AM (GMT 0)
I had been wondering the same thing about my situation and I'm not taking anything except 200mg doxy right now.

It didn't help that there was some confusion with the 2014 ILADS guidelines on their website. It's still messed up because following one link to the supposedly new guidelines brings you to guidelines that have "2004" printed in the lower right hand corner of many pages.

However, there is a link that brings you to the "true" 2014 ILADS guidelines.....and the starting doses of the antibiotics are indeed lower than what was listed in the 2004 guidelines.

I know the guidelines are based upon research and clinical experience. To be able to read amazinggrace's explanation of things is VERY comforting to me. Thanks, amazinggrace!!

My LLMD said it's not a good idea to overwhelm the body. Since I lost faith in doctors when I was navigating life with thyroid disease, it's been hard for me to have faith in even my LLMD.

However, my faith is building in him as I continue to research and read stuff on here.....especially amazinggrace's comment that treatment has to be designed as we go along. That is what's happening with me and my LLMD.

I guess I've been afraid that I might miss a window of opportunity for successful treatment. The more I read on here, the more I can appreciate just how important it is to partner with an ILADS-trained MD.

It was also comforting to read LymePickle's words that 3-6 months is usually the minimum to start feeling better. Thanks for sharing that, LP :)

I, too, have read stories of deadly herxes. Scary but, I can understand how it happens.

It does seem that slow and steady can win the race. I'll take it as long as I win :)
Posted 11/10/2014 1:12 AM (GMT 0)
cd37 think about adding something else to the doxy, such as an antimalarial ( plaquenil or malarone) . My llmd says doxy is good for lyme but it leaves a cyst form which as to be killed- thus the antimalarial to get at the cyst and other things. Also some people use herbals also with the doxy.

Utah- I also think it is the duration more than the am't of dosage that makes a difference. But of course talk to your llmd and see what they say!
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