After almost a year & a half of good health, I've recently relapsed. My primary care doc (who likes to tell me that chronic Lyme isn't a real disease) tested me for Lyme & found that I was positive for two IgM bands. Turns out they were the same two I tested positive for over the past six years.
I went to see my LLMD, & her tests for Lyme/coinfections are still pending. In the meantime she's put me on 500mg of Cefuroxime twice per day. It's been a while since I've been on abx, so please forgive my ignorance, but is this particular drug associated with heavy herxing? I was feeling okay for the first week or so (even went to Spain for work!) but since returning I feel like someone dumped a truck full of wet cement on me.
I've also been trying to exercise in small doses--I biked 3.5 miles the other day & felt like I was going to collapse by the end. Should exercise be avoided? I've been feeling like my heart is going to explode half the time, whether exercising or not. But there have been times that my heart rate has climbed about 170 while riding a bike, & that's not at all normal for me.
Of course, it could be anxiety, because that's one thing that never went away even after I went into "remission."
Any tips are helpful. I have to travel again this weekend & am really not looking forward to it :-/
Thanks all & take care, Kevin
Posts: 30 | From Brooklyn, NY | Registered: Oct 2008
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posted
I've been on so very many meds, it's hard for me to remember if I herxed especially hard on that one. But I do remember that after having about a year of good health, and relapsing, that first set of meds I started back on was KILLER.
So it may be more a result of getting back on meds again, as opposed to the specific med you're on.
On the exercise, the first time I was sick, everyone told me I should rest, and do easy stuff like tai chi or what have you. Which I did, and ended up having to do PT after I got better, because my muscles were all mush.
In my super nonmedical opinion, I would try to keep up with whatever exercise you're able to do. I did have to be a lot more aware of my heart rate - tachycardia was something I had a problem with. I ended up having to do longer walks at a slower pace, instead of doing a shorter run.
I also did some traveling while on IV meds, and I just had to do a little more prep work than usual. Drink a lot of water, make sure that I was doing what I could to sleep well leading up to it. Bringing things like a small pillow or blanket that made me more comfortable on a plane... things I would normally not mess with before.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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kgg
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posted
I am not sure I would avoid exercise, but listen to your body. And while on treatment you may not want to do your regular workout but a modified one. Especially if you are running a fever or herxing hard.
Posts: 1856 | From Maine | Registered: Jun 2004
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posted
Thanks to you both for responding. I definitely don't want to stop exercising, as ceasing to do so would be a defeat in a way, but I'm listening to my body & taking it easy. Brisk walking can be my exercise for now, I don't need to bench press anything :-)
Side note: when I was traveling, I didn't really feel like I was herxing, but now that I'm back in the States, I feel like it's way worse. But now my diet has returned to normal, & I'm getting regular, consistent sleep. Can it sometimes take a couple of weeks before herxing really begins?
Or (hopefully) I'm still just jet-lagged!
Thanks again, K
Posts: 30 | From Brooklyn, NY | Registered: Oct 2008
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nonna05
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Hi! What family of med/ABX is that? I'm not sure I've heard of it??? What do you think brought the relapse on?
Nonna Posts: 2563 | From Denver,CO | Registered: Aug 2011
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poppy
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Actually, a couple weeks in to a new med is the normal time for herxing to start.
Posts: 2888 | From USA | Registered: Mar 2004
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I think it's just proof that the meds are working! That's the hope, anyway.
Posts: 30 | From Brooklyn, NY | Registered: Oct 2008
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nonna05
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what other ABX is in this category???/
Is this a new one being used? Are you only on one at this point?
What do you attribute your remission too?
I just hate to hear relapse /not cure.....
Do you feel like you may have to do what Dr. B and Pam (writer) did let it go back ,then hit hard 3 times to finish it off?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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I'm not sure what other abx are in the category, to be honest. I think my LLMD described it as a second-generation Keflex? If I remember correctly, that is.
This is the first time I've taken it, yes, & the only one I'm on at this point. It's the only med I'm on, period (except for Ativan for panic attacks).
The relapse might've been caused by a number of things: I had heat stroke & hypothermia in the past year, which might've caused some stress on my immune system. Also just lost my grandfather, who was a father to me, really. All of that stress/sadness might've brought something back.
I'm not sure what you mean about this "hit it hard three times" approach--could you please provide a link?
thanks again :-)
Posts: 30 | From Brooklyn, NY | Registered: Oct 2008
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TF
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posted
nonna is referring to how Pam Weintraub, author of "Cure Unknown" got rid of her lyme disease while under Dr. Burrascano's care. You can read about it in her book, available in the library.
Pam and evidently Dr. B also let themselves totally relapse before hitting the lyme again. I forget the meds they used. After the third time of allowing a total relapse and then treating, they never relapsed again.
What was unique about this approach is that Dr. B had Pam let herself get totally sick before treating all 3 times. He didn't want her to treat until she "hit bottom" so to speak. Evidently, that is how Dr. Burrascano got rid of his lyme disease also.
It would be best to read about all of the circumstances involved. It may or may not fit your case.
Also, regarding exercise, Burrascano does not want the patient to do any aerobic activity. So biking and brisk walking are NOT what he says you should do. Instead, he says the patient must do only non-aerobic exercise and suggest weight lifting and calesthenics.
He says NO to aerobic exercise over and over in his Guidelines. Please read them. The section on exercise starts on page 31:
If you do aerobic exercise while ill with lyme, you can evidently do permanent damage to your heart. So, I hope you take his words to heart.
Burrascano says to prevent a relapse, you must do one continuous hour of weight lifting every other day. My lyme doctor agrees with this statement and had me do this. I did it and I give it the credit for my full recovery and continued good health. I finished treating lyme 8 years ago and am still symptom free.
I proved to myself twice that this weight lifting boosts the immune system just like Burrascano says it does. I consider it a key to my recovery and continued good health.
It must be a full body workout, meaning that you work all muscle groups--arms legs, back, abs, chest, etc. Using about 4 weight machines and doing some situps will do the trick.
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission....
The program must evolve into a graded, ultimately strenuous exercise program that consists of a specific regimen of non-aerobic conditioning- see below." (page 31)
Posts: 9931 | From Maryland | Registered: Dec 2007
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I will definitely read through these guidelines as carefully as possible. The good news is that I was never really one for aerobic exercise to begin with. When I was last on abx, I started to lift weights regularly, to the point now where I've actually been able to maintain a consistent weight & look relatively healthy.
Since starting the new abx / ceasing to lift, though, the weight is just sort of falling off of me.
What about walking to & from the train every day? In the course of a day, I tend to walk about 5 miles--should I just be extra slow?
Also, & this is sort of an unrelated question--what about SNRIs/SSRIs? My LLMD prescribed Cymbalta to me during my last appointment. I notice that Dr. B's guidelines make no mention, though.
Posts: 30 | From Brooklyn, NY | Registered: Oct 2008
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TF
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posted
Cymbalta is fine. Many lyme doctors prescribe it.
If you have to walk 5 miles per day, then walk at a normal pace--don't jog or go so fast that it is affecting your heart.
You are not walking that much all at once, so it should be fine.
Get back to the weight lifting. It is very important. AND, don't stop the weight lifting even after you are in remission.
I also suggest no smoking for the rest of your life and no heavy/frequent drinking for at least a year after you finish retreating for the relapse.
Both smoking and alcohol weaken your immune system. That can cause a relapse. You want to do all the things that boost the immune system and none of the things that weaken it. That gives you the best chance of never relapsing.
One drink here and there is OK once you are back in remission. It is best not to drink more than that for the rest of your life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks, TF. I think I'm going to start taking the Cymbalta, if only to help with my energy levels.
I've been walking at a normal pace today, & it feels okay. Just a little tired.
What about other activities that might raise my heartrate (like riding my bike, or even sexual activity)?
I really miss lifting--think I'm going to go to the gym tomorrow! Once I'm done with jury duty, that is :-/
I quit smoking for good about three months ago--very glad that I did. I also haven't had any alcohol for two months. I really don't miss them / need them, so I'm okay with going without.
Posts: 30 | From Brooklyn, NY | Registered: Oct 2008
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nonna05
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I'm sorry,but how does Cymbalta help energy?/
It knocked me out when I tried it. Plus doctor said you'll gain 25 pounds in less that 2 months,,,Sure did..... my family literally thought I was high/loaded while on it..
Maybe it was also the start of when this/these illnesses started so bad..
I couldn't keep my head up for long, sleeping, pain ..the rest
Maybe it will help your anxiety.
Let us know how you're doing...nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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