posted
I have recently begun treatment and I am really confused and worried about what is going on. I could really use some seasoned advice.
I was on Tetracycline for 2 months. At the end of the 2 months I began having bad stomach problems and had to stop the Tetracycline. This was fine because it was right around the time that my LLMD was going to switch up my treatment anyways.
Right now I am taking two weeks off to give my stomach a break and then I will start on Biaxin and Plaquenil.
I had horrible herxes on the tetracycline. The biggest problem was pain. Every single muscle in my body hurt, along with my shoulder, knee and wrist joints. It got to the point where I had to take some time off from my job because the pain was so bad.
I stopped taking the Tetracycline and for the first couple of days I felt better. The pain seemed to get MUCH better.
Here's where my concern comes in..
I was under the impression that after starting meds, if you came off of them you were supposed to feel better, because you would stop killing lyme, and therefore stop herxing.
Although I did feel better for the first couple of days, I am back to being sick. I am in pain, exhausted, etc. And I'm on NO meds. Even my LLMD had said "well you might have a great two weeks". And I feel just as bad as I did when I was on the treatment!
Is this a bad sign? I am very concerned because if I feel bad on the meds, and I feel bad off the meds, are the meds even working? I'm now questioning the Lyme diagnosis which I REALLY don't want to do.. but I'm just worried. Is it normal to still feel bad even after you stop the meds?
I'm so sick all the time, I'm not working, and I really need to know if I'm doing the right thing.
Please help. Thank you.
Posts: 34 | From New Hampshire | Registered: Mar 2009
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posted
If you're really sick, I don't think you'll kill enough spiroketes to feel well for any extended period of time. You did say you felt better for a couple of days. That's probably about as well as you'll do for a while.
I don't think it's a bad sign. I think it's typical. Getting well from Lyme disease is a very slow process. When I first learned about Lyme and read about people taking years to get "better", I thought that surely wouldn't apply to me, but it has.
I don't want to discourage you however. I'm much better than I was 4 years ago, but I'm still not 100%.
Be sure you treat for Babesia, too, even if you don't test positive for it. It might save you some time. But if you tested positive for it, definitely treat it along w/Lyme.
I didn't test positive for it initially and didn't treat it for 3 years. Now I've finally tested positive for it 4 years after being diagnosed w/Lyme, so it had 3 yrs to grow unabated and really made me worse. I'm getting better now.
Posts: 975 | From California | Registered: Apr 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Laura,
Sorry you are feeling bad at the moment, but I can remember going off abx for just a few days and I felt absolutely horrible.
It was almost like the bugs knew they were in control and they were taking over.
It took me many months to reduce symptoms, sometimes some went away and new ones presented. There is no fast way to get well.
Horrible herxes mean you are having lots of DIE OFF and its a bit much for your symptoms to handle. Are you detoxing??? Have you been tested for coinfections??
Other things to consider:
Are you taking lots of good quality probiotics, antifungals (herbal if possible) to keep yeast under control, avoiding sugar/carbs, detoxing, exercising if tolerated?
Yeast will flourish even if you are not on antibiotics as the flora in your intestines takes months or longer to replenish.
Yeast symptoms can be as bad as lyme.
Keep a journal and write down exactly what your symptoms are so that you can sort of get an idea of them.
I found that helpful doing that the whole time I was treating. (i still log in minor symptoms if necessary)
Good luck and keep us posted! Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Thank you so much for your relplies.. I really appreciate them. As far as your questions, I am taking VSL 3 as a probiotic which I believe is a pretty good one. I am not taking any antifungals as I wasn't aware that there were any OTC ones that work. Do you have any recommendations?
I'm wondering if I have a yeast problem but I don't really know the symptoms to look for...
I haven't been detoxing either sheesh I didn't realize I was missing so many things. I'm new to this and I'm not really sure what to use for detox.
And as far as exercise goes I have extreme exercise intolerance so I am unable to do much. I cleaned the bathtub yesterday and literally wanted to die 2 hours later. I am still in extreme pain today from it. How pathetic huh.
I definitely do keep a symptom journal.. it is a great tool!
So again, thanks so much for your input and if you have any recommendations on detox, antifungals, or ways to spot yeast overgrowth - please let me know! Thank you! Posts: 34 | From New Hampshire | Registered: Mar 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I don't quite understand why you would think that being off meds you would feel fine. If you have Lyme, you are sick, and not treating leaves you in a sick state. Do you mean this heightened pain level has you worried? That shouldn't have any bearing on whether you could have Lyme.
One thing you should be aware of is that some people can be sensitive to the Tetracycline class of antibiotics, especially Minocycline. It can cause super strong herxes, but it also can cause Drug-induced Lupus in rare cases. DIL can sometimes take a while after stopping the drug to appear, and can last for weeks and in rare cases months.
This is possibly what happened with me while I was on Minocycline. The hightened pain took several weeks to diminish back to my normal Lyme joint, tendon, and muscle pain.
Another thing to keep in mind is that some antibiotics can keep working days after you stop taking them. You have a certain amount of buildup in the system as well (that fact is what the Z-packs are based on).
I would not sweat this at all - you are no longer on that med, and about to try a new one, so you don't have to be concerned about possible DIL. I would pay special attention to taking care of your stomach and GI - take high-quality probitotics, and be very careful with your diet, and your stress levels.
I have an herbal tea that I make that is easy to find the ingrediets for and cheap compared to store-bought supps. It helped my stomach immensely when I had an ulcer and bad pain before I began antibiotic therapy and during. Let me know if you would like the recipe or any other info - I'm happy to help if I can.
Edit: I didn't read the whole thread efore I posted - sorry about that. I see you take a probiotic.
Also, if you need some detox ideas, I have an herbal tea recipe for that too, that I credit with helping me almost as much as my antibiotic - but they work as a pair - I doubt I would be anywhere near where I am today without both of them, and the stomach tea. Anyway, let me know if you're interested, andI can post it here if you like.
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