I saw my LLMD yesterday and have been on treatment for coming up on 11 months. I've been on Amoxicillin, Minocycline, Cipro (three months and then when symptoms came back he's got me on it again, at this point, almost one month) and Mepron and Zith which I'm currently on.
He says that at my next appointment, which will be about my one year appointment for treatment, he is going to take me off the antibiotics and see how I do.
I suppose I should be happy but yet I'm scared silly. I'm still spending most of my time in bed from exhaustion, still unable to climb a flight of stairs on my own, having eye issues and bed wetting soaks, BUT on the positive side, when I first started treatment, I could NOT even walk, I was slurring words, my brain was a mess and a lot of pain.
I was undiagnosed for five years before getting the lyme diagnosis, so not trying to sound paranoid, but this has been a LONG LONG haul and a living nightmare as I know most of you relate to.
My doctor says that some get off the meds and feel so much better and I guess he's banking on that being the case.
Can I get any words of wisdom from others that were taken off the antibiotics and something to hold on to so I don't send myself in total panic which I still suffer from horribly hence the xanax.
I remember when I first started reading about all this, I had been hearing you should be symptom free for a certain amount of time. I'm not there yet, so am I setting myself up for trouble or can others give me positive reasons why this is definitely a good thing.
I guess I'm just looking for reassurance. Thanks.
Cathy
Posted by sixgoofykids (Member # 11141) on :
Are you sure he's an LLMD? One month is short for babs treatment. Four months is short for Lyme treatment.
I was on babs treatment for 8 months and am still on Lyme/bart treatment.
Posted by Vermont_Lymie (Member # 9780) on :
In my opinion, if you are still having symptoms, then you should still be in treatment. At least, I have found that my health is improving as treatment continues after 12 months -- I am better at 15 months of abx than at 12 months. My best wishes for your health, I hope it goes well.
Posted by valymemom (Member # 7076) on :
I know when my son saw Dr. B. he said atleast 5 months for babs.
I think most still want you symptom-free for two months. I know some docs have been suggesting the Cowden protocol for those who have treated for 2/3 years with abx and still have symptoms.
And then after 6 months on Cowden.....evaluate what's next.....abx again or more herbs.
Posted by tdtid (Member # 10276) on :
First, I want to thank everyone for the feedback in such quick order, both here and privately. In my jumpiness, it is obvious by some replies that I didn't explain what I've done for treatment up to this point very well. Not sure if it changes any responses, but thought I better clear up some things I obviously left confusing.
I think I'll do the listing of the drugs in the order and for how long to help with the confussion since I'll work off my diary and hopefully make more sense.
Amoxicillin 3000 mg with various Zhang (I was on the Amoxy for 6 weeks)
Cipro 500 mg for 3 months
Minocycline added to the Cipro after being on Cipro for 2 months. Was on the Mino for about 2 months plus a little
Started Mepron when he stopped the mino on April 29th (so I've been doing the bart longer than I guess I made it sound like)
Added Zith to the Mepron about three weeks into that and I'm still on the Zith as well.
Then just short of a month, he added the Cipro back so at this time, I'm taking all three of these meds.
Total treatment is just short of 11 months at this time.
I really shouldn't be complaining since I'm functioning atleast and I do get out on my good days, something I couldn't do by the time of my diagnosis, since I was totally bedridden. So there is definitely improvement.
Through all this, I have also been put on Armour Thyroid, Cortef, Xanax, Klonipin, Ambien, and percoset in extreme emergency...all of which I still have at this time.
Perhaps it's just my anxiety getting the best of me since I have been feeling optomistic that I'm definitley on the right path and seeing improvment and maybe my enthusiam to this is what has my doctor thinking I'm holding up well.
He has not said 100 percent that he will be taking me off and will decide at the next appointment for sure, but he says that is what he's hoping to be able to do.
My real concern is that I don't go but a few days before I've knocked myself back in bed. Maybe I'm pushing too hard? I don't know or maybe I'm a big baby.
So for those that gave your feedback, does the med list make more sense and does it change any of the feelings on this.
I think like all of us, I just don't want to stop too soon, only to be tossed back fighting this battle in high gear yet again. At the same time, if my body may be able to fight this, I surely don't need to be taking meds I don't need, but how do I know without taking a risk.
Hopefully I've made a little more sense in my explanation and again, thanks for helping me sort this through with some intelligence, something my lyme brain isn't always doing always. THANK YOU!
Cathy
Posted by Aniek (Member # 5374) on :
You want to be symptom free for 1-3 months.
Fatigue can be a sign that you need nutritional help and supplements, rather than still the Lyme. But if your bed is soaked at night, that really suggests babesia is still there.
Posted by sixgoofykids (Member # 11141) on :
I agree about the sweats ... my LLMD was measuring my babs progress by the sweats, so be sure you tell yours that you're still having them.
I would listen to his reason for going off the meds. He may think your symptoms sound like side-effects rather than symptoms ... but with the night sweats, it doesn't sound like that to me.
I'm taking NT Factor for fatigue. I buy it from my LLMD as only a doctor can buy/sell the full strength kind. It works pretty well, though it does not get rid of it entirely.
Do you have candida problems? That can cause the fatigue as well.
I would be worried about stopping treatment if I still couldn't climb a flight of stairs on my own. Be sure he knows all this stuff at your appt! Maybe he'll keep you on treatment longer.
Now, if you were switching over to herbs for a few months to continue treating and to work on candida/detox, I wouldn't think that was an entirely bad idea (though I wouldn't stop babs treatment yet).
I really want to switch to herbs once I get the coinfections under control, which will be a while. I've been being treated since January.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Aniek: You want to be symptom free for 1-3 months.
This is really scary to me! I think you need to be frank with him and tell him you're just not ready to take the 30ft dive! I hope he will respect that!
I agree that it sounds like the babs is still there. It takes a long time to clear.
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