I was diagnosed with an advanced case of lyme disease in late November after nearly 1 1/2 years of autonomic symptoms and joint pain. I started 250mg of zithromax daily on 12/1 and within the first few hours I started having an increase in symptoms. My health has steadily been declining since then. I've now been on the antibiotics for about a month, and am almost completely bedridden because of profound orthostatic hypotnesion and tachycardia.
I've increased my doses of midodrine and mestinon (which I was on before starting antibiotics), but nothing seems to help my symptoms.
My doctor believes I'm having a herxheimer reaction, however, in all the literature I've read, herxheimer reactions don't last for more than a week or two, even in the most extreme cases.
Does this sound like a herx? Have any of you had herxheimer reactions that lasted for weeks at a time? If so, what helped them clear up?
Thanks so much!
-Lauren
Posts: 22 | From Maryland | Registered: Dec 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I cant tell you if yours is a herx or not but I can tell you the longest one I had was 3 months.
kelmo
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Member # 8797
posted
I don't know if there is a specific pattern to a herxheimer reaction. My daughter had a big one last week.
Of course, keep in touch with your doctor. You don't need the heart involved. But, my daughter had a HUGE herx starting in zithromax.
She had to take 250mg every other day for the first couple of months. The doctor wanted her to work up to 500mg daily. We thought that would be impossible.
Now she takes 500mg daily, plus 300mg of Rifampin. It's hard on her, and she takes the weekends off.
Maybe you could back off on the zith, you don't want to overtax your liver. The dying bacteria are releasing toxins into your body and I believe it inflames everything.
Some feel lemon with hot water and a tablespoon of olive oil helps. Go into the library on this site and print off Dr. Burrascano's 2005 Guidelines. It has some good information.
Bettyg will be along soon to send you some Newbie information.
Sorry your are feeling so sick. Just know that this misery indicates something is doing something good for a change. This is the beginning of the journey.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Lauren,
Welcome to the boards. I'm in much the same boat as you are.
I started treatment on Nov. 6th after five years of going mis diagnosed. Four days into my first antibiotic, I started herxing.
After six weeks of this herxing and finding myself totally bedridden and discouraged, my doctor changed my antibiotic to treat bart.
So I started that a little over a week ago and yep....still struggling although the herx keeps changing.
I go from horrid fatigue, to moving pains, to tachacardia and headaches. My LLMD says that this isn't totally unusual for someone that started out as sick as I was when I finally found my way to getting proper diagnosis.
So although you are probably discouraged in the way that I have been, I have talked to others that had this same thing happen in the beginning.
I too hope to reach the point of the cycles you talk of where we start feeling better for awhile, so we atleast know we are on the right path.
Best I can tell you is to stay in contact with your doctor in regards to what you are feeling and mine told me not to fight it and get as much rest as possible.
Good luck and keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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5dana8
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Hi Lauren
I am sorry to hear you are feeling so bad. I did feel alot worse most of the time durning my 3 year treatment for lyme. Way worse. I too have read about the 2-3 week herx time & this did not apply to me.
I herxed most of the time I was on abx. Untill the last year where I would pulse & get a short break that allowed my body time to recover & clear the herx.
As far a a die off in the heart, I was told you have to go slow because that can cause some problems. I did end up in the ER a few times when I had a die off in my heart.
But the years of treatments did clear up my heart problems & Alot of my neuro problems as well. I am glad in the end that I went threw treatments now.
But at the time It was hell & many days wondered if I would survive. If the herx's are too much for you to handle I wonder if you can ask your LLMD to go a little slower?
here's a link at the bottom for a detox tea recipe that I have been using that helps me alot. Please run this by your doc first. It's very mild teas compared to some detox teas.
Drink lots of water & get plenty of rest. And don't forget to tank up on the pro-biotics as well.
ps. when you are feeling up to it you may want to do a search on "detox" I also found some relief with the detox foot pads.
Remember to talk over everything first with your LLMD . This is not medical advise just my opinion.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lauren,
Many people do get worse on antibiotics, sometimes for a long period of time. But if you are bedridden, you might be over doing it.
It might be possible to reduce your zith dose, or take it every other day, and see if it helps. But talk to your doctor first.
I'm also sending you a private message about a doctor I see in Maryland for my autonomic nervous system problems. When you log in, there will be a flashing envelope next to something that says you have a new private message. Click on the text.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I get severe tachycardia on any of the Macrolide antibiotics. It's rare, but the antibiotics can cause it.
I see a well known LLMD and he told me to never take a Macrolide again. He didn't think it was a herx, he thought I was one of the people who should never take any Macrolides.
If you check out www.rxlist.com it says that zithro can cause tachycardia.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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HI Lauren~ Sorry to hear that you're going through this and feeling bad. My neurologist told me the day I started antibiotics, that it would be like "spraying Raid in an ant hole". What I didn't understand that day, I clearly got a few days later when I was flat out feeling worse than I had ever felt before (which says a lot) The bacteria are scrambling, to put it mildly...and you are hosting the war! Hang in there and keep in close contact with your Doctor. Best wishes to you!
Posts: 4 | From Fairfield County CT | Registered: Dec 2006
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Zithromax is a very tough drug to take for some people. Some of my family meambers are on it, they can only take a very low dose a few days a week.
Everyone is different, there are different variables for every person..... How long you've been infected, what co-nfections you have, what strain of Bb you have, etc.
Also I have been on abx for 2 years and I STILL HERX. Not nearly as bad as I did in the beginning. But I would say the first 4 -6 months were the worst! I slept nearly 15 hours a day and I was in extreme pain. I am alot better now, I used to take 8 pain pills a day, now I maybe take a few a week. It does get better.
Almost everyone has an increase in symptoms after starting abx, thats part of your body fighting the infection and die-off of the bacteria. Also you can herx when you start a new drug or herb even months or years later.
What you are going through sounds very simular to me and my family (we have 11 in all who have Bb)
I'll talk to my doctor about the possibility of switching antibiotics. The problem is that I already had pretty bad tachycardia before starting the antibiotics, so it seems likely to me that anything I take will exaccerbate that aspect of my symptoms.
It's good to know that others have had similar reactions though. I was beginning to worry I'd been misdiagnosed, but not anymore.
Thanks again!
-Lauren
Posts: 22 | From Maryland | Registered: Dec 2006
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I am so sorry to hear about your situation. You should also get tested for co-infections (babesia, bartnella, and erchirlia), they can cause you complications and problems in treatment. They can also make your herx's longer.
I thought I had treated all mine, but after having my galblatter removed (due to IV meds) my babesia (which i never even tested positive for) became active. I was bed ridden for a little over a month.
I had been doing so well, and then I was hit like a ton of bricks down! I know it may seem like the meds are making you more sick, but just remember that it's killing those horrible bacteria! Being sick, can be a GREAT thing in the long run!!!!
Good luck!
Lindsay 22 yrs old
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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bettyg
Unregistered
posted
welcome lauren! you think you're confused now; it takes years to begin to hit the surface of really understanding what lyme and/or co-infections are about! don't mean to scare you; just stating the facts.
i've been on this board since 8-04; feel like i am just now beginning to get a good grasp of things but it depends on our neuro lyme of the brain as well.
heart; use your gut reactions here; it they tell you to go to the ER; GO PROMPTLY! since lyme affects the heart too and you had previous problems as well; more than likely undx lyme!
i'll send you a pm, private message, with my 21 pages of newbie links/advise. half way thru it is a long list of lyme symptoms; so look that over good ok.
isn't it great now knowing you are NOT alone in walking down this pathway with others going thru your heart problems and can give you good NON-MEDICAL advise from their own experiences.
lots of rns on here, some doctors, and occupations of every variety with international members as well. i'll send you now before i forget!
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The begining of treatment can be the wosre time. For me it was 9 months of hell. Heart issues all over the place. I was in the ER many times and gald I did for the piece of mind that came with it. My caridiolgist was great, he admited that someting was going on even though my stress tests and echos were great.
It has been 20 months now in treatment and I still get some heart issues but nothing like in the begining. I only had one period 2 months into IVs were I had confirmed atrial fib in the ER - now boy does that feel scary.
Zith was one of my best meds but it does raise some heart issues especially if there is some babs which I had. With the long half life of zith it is possible to pulse the zith in some kind of fashion that agress with your system.
I also see a energenic tester throughut my treatment. One of the things that helped my heart issues the most was getting a lot of lymphatic drainage support.
There is something that does not get addressed to often. There is a whole lot of lymph tissue that goes around the heart. Once the lymph system gets backed up with toxins from die off and from meds, this system can put pressure on the heart and aggrivate it. The heart can be in perfect order but if the lymph system is clogged up around it is gone to work harder. One of the best suppliments that I have used is hawthorn. It helps directly with lymph drainage around the heart. My cardioligist even admitted to know this. You can find information on the web that will tend to lead to the same conclusion. All I know is that it made those hard beats of the heart calm down.
Posts: 582 | From milwaukee wi | Registered: May 2005
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I do agree on tested for co-infection or at least being treated for them. Because most tests are so unreliable you may come up negative and still have it you have to go by symptoms.
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