I posted this in reply to "Asymptomatic Days"? but wanted input from all of you so thought it would get more reading here. Thanks for your thoughts.
I feel guilty for saying this but I feel pretty normal now. I guess my lyme was responsive to ABX.
I was diagnosed in Nov. and was on amoxicillin for 60 days but that didn't knock it out completely. In my January blood test I still showed positive but we thought since I didn't have any symptoms that maybe it was resolving.
I went on ceftin 3 weeks ago because my April blood work from Quest and Imigen showed I still had lyme and I had started to exhibit symptoms (hip joint pain, brain buzz, and extreme irritability and emotionality).
Within 10 days of taking the ceftin my symptoms had become negligible and now I feel quite normal
I had blood work this morning and go back to my doctor next Tuesday to find out the results. I think they will be good.
What do you think? Am I out of the woods?
Posted by laughnos (Member # 15307) on :
......forgot to mention I am also on Samento and NAC taken with Vit. C in addition to the ABX, and the usual vitamin protocol, i.e. multi, B complex, omega 3's and 6's, I think that's about it. Something is working!!!
Posted by feelfit (Member # 12770) on :
good for you! Was your infection caught early? If so, that may be the reason that you feel better so soon.....
Feelfit
Posted by Lymetoo (Member # 743) on :
I would follow what Dr B says, do not stop abx until you are symptom free for at least 2 months. I would then, personally, do a flagyl challenge.
If you don't herx on high doses of it, you're home free. Ask your dr about it.
Let's hope you're "done!"
Posted by webmeg (Member # 13647) on :
Great news that you're feeling so well!
It's hard to say if you're "out of the woods" or not. For me, on 300mg of Doxy I felt great - 95% symptom free - just an occasional twitch or something. But as soon as I went off Doxy, things came back, usually within a few days. So I would say you don't really know how you are doing until you are off abx for a while.
Lyme reproduces in cycles, around 28 days. Since you've been on Ceftin just 3 weeks you've not been on it for a full Lyme cycle. Probably good to stay on it at least that long.
If it were me, I would probably ask to stay on another 3 weeks (so 6 weeks total). If you are still totally symptom free after that, do a flagyl challenge. If there is no Lyme bacteria floating around you should feel fine on flagyl. It's not 100%, but a good test.
What you don't want to do is undertreat Lyme. For some of us, it's easy to get the lyme in remission, kind of subdue it and feel ok while on abx. The key is to actually truly get rid of the bacteria and feel good off all medicines long term.
If you have a supportive doctor who is willing to treat you a while longer consider doing that. A few extra weeks of abx may assure you you got it all.
Good luck - keep us posted on how you do!!
~webmeg
Posted by laughnos (Member # 15307) on :
Thank you so much for your replies!
I am not familiar with a flagyl challenge. I'll look it up online.
My ceftin RX came with 2 refills so I can certainly keep going, and will. I'll talk to my doctor about how long to do so and between him and me a decision will be made.
Since the first ABX didn't knock this out I am going to err on the side of caution and stay on it for longer.
You have given me something to think about. I now realize that maybe the Lyme has not gone through a full life cycle and it is too early to know if I am really better.
Off to check the flagyl challenge. I love this board!!!
Posted by kitkat32 (Member # 9682) on :
Don't feel guilty about posting that your feeling well. That is what we all want for each other. It gives others hope to hear recovery stories.
Please be careful though and do what others have said. It is a good idea to stay on abx until your free of symptoms for 2-3 months.
I did NOT do that. I was feeling wonderful for 6 weeks. I thought that I had it under control. I moved on with my life and was happy as can be.
Then one morning I got the rug ripped out from under me and had to start all over.
Please follow an LLMDs advice so you can stay symptom free forever.
I hope this is the end of your illness. That would be such great news to hear. Keep us posted.
Many healthy days ahead...kit
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Lymetoo: I would follow what Dr B says, do not stop abx until you are symptom free for at least 2 months. I would then, personally, do a flagyl challenge.
I second this recommendation.
I was symptom-free for a couple months, but symptoms would come back on tindamax. My LLMD wanted to try a iighter, herbal protocol to see if it would keep me "normal" rather than keeping up with the hard-core abx.
The symptoms came back.
Posted by lymebytes (Member # 11830) on :
That is great news... but remember symptom free + 2 months more on abx. I am w/Lymetoo regarding Flagyl.
Especially if you can handle a round of Flagyl without any herx, you likely could be in "remission".
Flagyl is important..some think they have beat it until they get on this cyst busting, co-infection killing abx and symptoms become obvious again that you have a ways to go.
Posted by laughnos (Member # 15307) on :
Just came from doctor. I was a little premature on celebrating. I am still positive for lyme and even though I think I have no symptoms, he thinks I do because of some recent memory losses. So, I am to continue with what I am doing as far as staying on the Ceftin and go back in another month for another evaluation and blood tests.
He said that it is more important to treat symptoms than the blood results. Does that make sense? He is not a lyme specialist but we live in such a tick infested area (Connecticut) that he is very familiar and has treated many, many people. He said to only treat for 2 weeks after symptoms subside. I know that is not what I have learned here so I am discounting that. He is good about working with me and coming up with a plan together.
Posted by Keebler (Member # 12673) on :
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This is where some articles and research from ILADS members would be great so your doctor could read those. While you might get some good and accurate guidance here, the doctor will want to see the source, the citations.
I don't recall what the ILADS treatment guidelines say about this. This can be downloads from www.ilads.org .
The LDA site has ILADS seminars on DVD. If anyone has that, can you say if this question is addressed on a DVD? LDA: www.lymediseaseassociation.org
I sent you, by PM, an excerpt from Goldings' article earlier today that speak to that somewhat.
I wonder, too, if your doctor would like to talk with some of the ILADS doctors?
What I recall reading, but can't place it, is that you would treat at least for a full life cycle of lyme beyond the time feeling well. Goldings states the life cycle is three months.
There may also be references to this in some of the books about Lyme.
And, all that said, you might ask him how many of his patients have done well (and for how long) with his current approach. He might just have some secret and giving him the chance to share his experience is a good give-and-take for the relationship.
Opened-ended statements help - something like: "this article says (this). Could you take a look and tell me what you think about what the author says? - and - Here's the phone number of the author if you'd want to call and talk - or - this cut of this DVD discusses that."
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Posted by Lily (Member # 13158) on :
Hi,
It sounds like you have a great doctor. However, I still think it would be wise to visit a LLMD. Since your health is so important, I say, go to a specialist.
You current doctor still will probably work with you and you can get some real peace of mind
Lily
Posted by laughnos (Member # 15307) on :
Thank you for your replies. I will do some research (thanks for the helpful links!!) and bring some of this to my doctor when I see him next. I did not receive the lab results from the lyme specialty lab today (those take longer) but will update when I get those either later this week or next week.
Thanks again for all the support and info.
Lisa
Posted by Michelle M (Member # 7200) on :
Hi Laughnos.
I didn't see an answer to the question of whether you caught this early -- i.e., did you start treatment ASAP when you were bitten?
Another question, if you'll oblige:
In your neck of the woods, the rate of coinfection with one or more other diseases such as babesia, bartonella, erlichia, etc. is fairly impressive. I've heard 30-60%. Meaning, you're pretty likely to have one or more. Tests aren't that hot, but the best tests we have are through IGeneX, and perhaps also Fry Labs (see the Newby Links).
If you have a coinfection, you can treat lyme till the cows come home and you won't get well.
Since I don't get the impression your doc is an "LLMD" or lyme specialist, I would really urge you to ask him to contact IGeneX and request they send a kit -- they will. Ask for a coinfection panel for your area. You could wind up very surprised at what OTHER critters you are hosting!!
Also, you might ask your doc to consider following Dr. Burrascano's guidelines for lyme treatment. He does seem amenable. An LLMD is preferable, but some docs are friendly and not averse to learning new tricks.
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