Topic: Your experience please. Why do I feel worse now when I felt great for 3 months?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi folks:
As you can tell from the number of posts, I'm in need of some support. I was doing well...great, actually. My apologies if I'm repeating myself. I just need to vent and need some guidance / feedback.
Then, mid September we started going after Bart and everything changed. I went off Biaxin / Amantadine and restarted Doxy with Levaquin for 2 weeks. I didn't really notice any progress or change other than some intermittent GI upset.
Then, the Levaquin started to irritate my tendons so I stopped. After stopping Levaquin I had a flu-like malaise / fatigue for 2-3 days. Hmmm.
I then Started Rifampin and went back on Biaxin with Amantadine. The first 2 weeks of Rifampin were tough. I had a surge of original symptoms I hadn't had since starting treatment. Not sure if it was due to Rifampin side effects, a Bart (or other) herx, or a relapse. The symptoms gradually faded and I settled back in to my usual 4-5 mild symptoms. Calf twitching, tinnitus, intermitted weird vision and left foot pain.
Stopped Rifampin after 3 weeks / 2 days ago since liver enzymes were high.
Today is first day of cold turkey and my jaw is very stiff and ears are so full they almost hurt. Vision is very weird.
I'm down. just plan down. Down down down. I don't get why I was doing so well before...greater than 95% and ever since I started going after Bart it's like I'm almost back to square one.
LLMD says we will redo liver enzyme tests in 2 weeks. If I'm good, we will most likely start Rifabutin (continuing Biaxin / amantadine) and may add in Bactrim DS.
Today is probably the worst day I have felt in 4 months. Dizzy, ear issues, malaise.
In your experience: -Is this a Bart flare after stopping Rifampin? -Am I feeling crappy due to high liver enzymes and therefore overall body toxicity? -how can I help get my liver enzymes back to normal. I'm already taking 2x super B complex / day and 350mg of Milk Thistle.
Sorry for the length and for being repetitive. I'm just feeling very lost today and am so concerned I'm going to be back in that very dark place I was in the March time frame. it is very scary to think about.
Thanks for being my therapist.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I do not know much about the effects of antibiotic treatments, as I have no experience with them.
I do know that when Bart is treated and killed, it brings its own symptoms. Maybe not a Herx in the strict sense of the word, but a negative reaction.
We have experienced this in the form of more joint pain that does not go away right away, and headaches early in the Bart treatment. The head aches do go away as you treat it longer. Also sinus problems, that also will go away after longer treatment.
I am guessing you will feel better in a few days, but if the Bart is not gone, this will be temporary, as the Bart will re-establish itself.
I am still learning about Bart and what symptoms treatment brings on, but this much I have seen first hand.
I hope you feel better soon. Some of this could be from the chemistry change since quitting treatment, but if it is, I would think it would be very temporary.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Honestly sounds like you are herxing. The dizziness/jaw stuff and Rifampin has a very long half-life - it still is in your system.
If it were me, I'd up the milk thistle even more (as you cannot take too much - your body only uses what it needs) and chug water with lemon (or lemon oil if you have it) like there's no tomorrow. A nice bath in epsom salt and baking soda might help - (2:1 ratio) but make sure it is warm, not hot, and don't spend more than 15 minutes in it.
Your body is screaming 'I am toxic. Help me'. So think in that perspective, ok? Every flare is not a total backslide. In fact, I am willing to wager that you will feel MUCH better in a day or two.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
bcb, here is a short summary of what lyme and coinfection treatment does to the patient:
Doctor puts patient on first medication or med combo. Patient feels lousy at first (this may or may not happen), then begins to feel better and better.
After a number of months of feeling better, doctor switches meds--either to start treating another disease, or to continue treating lyme with meds with a different killing profile.
Patient feels worse. This goes on for a while. Then, patient begins to improve.
Over and over the same thing. Every time the patient reports feeling good for a number of months, the doc changes meds. This is to prevent plateauing and to continue the killing.
I had a friend who lamented, "I'm going to see the lyme doc next week and when I tell her how good I'm feeling, I KNOW she is going to change my meds! Then, I KNOW I'll feel lousy again."
She had figured out the pattern. (By the way, she got rid of all of her diseases and has been symptom free for a number of years now.)
Each time you go after a new disease, or go after lyme with a different combo of meds, you will feel worse at first. But, if the treatment is working, you will eventually feel better and better.
That's why many say it is 2 steps forward and 1 back. Some get upset that the doc has changed the meds, but this is necessary.
You can't just stay on the first med combo forever. That just won't work, believe me.
You are in the first med change (which started in Sept. with levaquin), so you haven't seen this pattern yet. But, hopefully, you will see it and then you won't get so upset about a backslide or fear of descending back into the lyme hell-hole.
When you add Bactrim DS, you will be attacking babs, so you can expect the same thing to happen again!
I know where you are coming from, believe me. Hope you start feeling better soon. It takes time. And, it sounds like your doc knows what he is doing. So, all should be well given enough time.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In another post you said that when you went back on doxy you also added flagyl. Flagyl kills the cyst form of lyme. So, it sounds like this was your first experience with a cyst buster. If so, that probably explains the 2-3 day malaise/fatigue. Typical herx from flagyl.
So, you are going after lyme with a different med combo AND you are going after bartonella for the first time. That's 2 changes to continue killing your diseases--both guaranteed to make you feel lousy at first.
Posts: 9931 | From Maryland | Registered: Dec 2007
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janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
TF knows what she's talking about as she's been there.
Also remember with the bart treatment there is the emotional rollercoaster of emotions.
Being on the rifampin like you had a lot of the ear fullness/ringing. I also had headaches which are now gone.
Two steps forward and one step back is part of the game called "lyme and friends". Your doctor changes the meds when you are feeling better to surprise the bugs and kill them when you least expect it.
Hang in there it's tough. I know how you feel and I've been there myself. Take care and know we are sending you pleasant thoughts.
JKV
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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posted
Thanks so much, TF. This is sometimes hard for me too. I think we get so afraid that we're really losing ground. It's so hard to tell where we really are in terms of our progress. Have I told you lately how much we all appreciate you?
bcb, I also think that you will soon be seeing progress. I can't imagine that you could get to a 95% point, and then be back where you started. Try to stay positive, I'm so sorry you're so down. Your friends here will pray for you.
Posts: 246 | From south florida | Registered: Mar 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hope you are back to feeling better very soon.
These steps back are so hard to figure out.
Our daughter tested high on liver panels once, retested couple of weeks later and were fine the entire time on Rifampin.
Best of luck to you.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all. It really helps. I feel better this AM (I'm in Hong Kong and flying home today, thankfully.)
Here is one more comment...I have been pulsing my Flagyl all along. 1000mg 3 days every 2 weeks.
TF and others. One of my concerns is I've been on Biaxin / Amantadine since mid-June (except for the 2 weeks I was on Levaquin.)
When I start Rifabutin and Bactrim DS in 2 weeks, or whenever my liver returns to normal, I will still continue the Biaxin / Amantadine and flagyl pulse.
Part of me is okay with this as I know I tolerate Biaxin well. But part of me also thinks it is time to switch up the primary lyme med / macrolyde. Perhaps switch to Zith which is preferred with Bactrim?
Although I don't want to change too many things at once. Maybe I'll stay on Biaxin until I get used to the new meds and then switch so I know what's what.
Thanks again. I guess my primary problem was I never have really herxed or backslid until now. Since starting treatment it was just a steady onwared and upward. I was hoping I would be done in a few months. Now I'm resigned to the fact that I will be here a bit longer.
Sorry I paniced and thanks for the unending support!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Levaquin and Cipro make me feel very ill and have triggered relapses.
Posts: 1954 | From Illinois | Registered: Aug 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I always relapse in the fall and into winter. I feel great in early summer and by late August I can feel the slide. It horrifies me too as I am terrified of going back into that bartonella/lyme state of mind.
I hope you feel better soon. Don't let it worry you too much.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I didn't read all the responses, but when I stopped my bart meds one time, I got worse than I had ever been within a few days.
When my daughter got off from Rifampin, every day was a little worse than the day before. She stopped taking it because she felt bad on it. When she stopped, she felt even worse.
My theory is that it was bart coming back for both of us.
Posts: 984 | From US | Registered: Dec 2007
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posted
My story is dissimilar except for that fact that i was doing "great" at one point early in treatment, and backslid since then. I had tested positive for lyme and babs.
I'm doing my own kind of experiment in drug toxicity. I stopped EVERYTHING, and will continue to do so until i see my symptoms worsen .. 2 weeks into it and i've seen nothing but improvement.
A lot of people preach detox on this site, and i agree. But what about all the synthetic chemicals we willingly swallow on a daily basis? I can't ignore that .. i'll let you know how it goes.
Posts: 339 | From Outer Space | Registered: Aug 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all. An update...I've felt really good / great the past 3 days. This makes me wonder if I even have Bart as I should have "relapsed" by now, but clearly haven't. My tinnitus is almost gone (the best it has ever been).
hmmmm..
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
TF That is one of the best explanation I've read. It is good to be reminded of this. How, easily we forget when we are feeling better. It's like putting on the gloves for the next round.
Thank you !
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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