This is topic I AM STOPPING DOXYCYCLINE ASAP!!! in forum Medical Questions at LymeNet Flash.


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Posted by Karol (Member # 15831) on :
 
Hi Everyone,

I am new here and must say I have already received so much support and for that I thank you all.

I have been 5 days on Doxycycline 100mg pills am and pm and I do not know what is happening but I have gotten so much worse that I am stopping this drug.

My pain level on a scale of 1-10 is 100......just excruciating!!! I want to put my head through a wall.

It was suggested that maybe this is NOT herxing as the mg dosage is probably too low to cause me to herx..............whatever the case is I am not a gluten for punishment.

I will treat with a LLMD once I find one that takes insurance. Until then...I will just go to bed and stay there.

Every muscle, joint and fiber of my body is screaming, and I was NOT like this before I started this darn Doxy.....guess I am a little disgusted right now.


 

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Posted by Lymetoo (Member # 743) on :
 
That is a big herx!! Yes, you could be herxing on a small dosage...especially since you've most likely had Lyme for a long time.

Many of our drs tell us to back off the meds when the herxing is too rough.

Hang in there... Do what you feel you have to.
 

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Posted by tailz (Member # 10014) on :
 
I had to stop minocycline, a relative of doxy, for that reason. I don't believe what I was experiencing was a herx at all, but more likely a toxic allergic reaction.

Check your teeth and tongue though - when I take mino, my tongue gets especially greyish-whitish-green in color, and eventually I end up with a greyish-black coating on the backsides of all my teeth - a coating that tastes like metals and was a bugger to remove at my last two dentist appointments.

My teeth had to be polished numerous times to remove the film, and even an ultrasonic device had to be incorporated, and even that didn't remove all the staining and discoloration.
 

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Posted by gemofnj (Member # 15551) on :
 
Hi Karol,

Im so so sorry you are in so much pain. Maybe you are having a reaction to that particular medicine. Did you check with your doctor?

Hope you feel better soon.
 

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Posted by cactus (Member # 7347) on :
 
Karol, I herxed on that much when I started treatment. It was bad.

Like you, it was before I had an LLMD, too, so besides the support on lymenet I had no clue what was going on.

Do what you need to do to take care of yourself, and don't beat yourself up if you have to take a break.

Stay hydrated - getting dehydrated will make you feel even worse!
 

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Posted by randibear (Member # 11290) on :
 
i bet you are herxing really hard. how long have you had lyme?

when they gave me flagyl it flat put me out --my headache was so severe i lay curled in a ball crying and holding my head. nothing helped the pain, nothing...

after 3-4 DAYS, yes days of this excruciating pain, it went away and i felt wonderful. y head felt clearer and i could actually form real thoughts again.

i hope you hang in there...
 

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Posted by bettyg (Member # 6147) on :
 
FYI,

i herxed daily for 20 months on pulsed antibiotics:

3 days on doxycycline; 2 days off; then switched to 3 days of biaxin, 2 days off; then doxy again

i have to keep remeinding myself THAT THE SPIROCHETES IN ME FOR 34 YEARS WAS BEING KILLED OFF so i endured.


we each decide for ourselves how much pain we are willing to tolerate or not and when we need to back off.

LISTEN TO YOUR BODY.
 

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Posted by Karol (Member # 15831) on :
 
Someone asked how long I have had Lyme, the short answer is I do not know.

The Rheumy told me it is new and the proof was a positive IgM yet after some research I am finding out that he does not have a clue what he is talking about.

I have been ill since 2003 and was dx with Multiple Sclerosis in 2005.

Who knows, maybe it has been Lyme for years???
 

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Posted by Hoosiers51 (Member # 15759) on :
 
I did IV doxy and saw NO results, despite feeling horrible the whole time!!!! I kept thinking I was herxing, but who cares if you are herxing if the drug can't "close the deal"? Some people would say "you aren't doing it long enough", but I was on the pill form for like a year, feeling horrible, then did IV for 4 months, still horrible, until I finally switched to Mepron plus Zithro then Amoxicllin and have had some success!!!! Of course you will likely herx on just about anything.....but if you have an intuition this isn't the drug for you, listen to that intuition.

Keep in mind you may have coinfections even if you test negative for them. Don't be afraid to try different drugs. I can actually tell the difference between when something is just making me feel like dog poop and it will never work and when something is a herx. You can't explain it, but you just know.
 

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Posted by Alv (Member # 15192) on :
 
Yes you are herxing ...but I knew about herx and just hanged in there....

beilive it or not I had cried for 2 weeks -first ones.....pain every where and mostly -as I had neurolyme...deep pain on my right arm from entire right side back of the head and right arm

It was so deep-surreal pain -nerve pain...joint and muscle pain was horrible but I think when I felt nerve pains ...I had moments of no relief for at least 24/7 for about 2 weeks and was at that point crushing myself somewhere with my car and be done with lyme and everything else at that point

It is hard when no body beilives you .But I knew as I had to go through this...beilive it or not....That pain is gone....you are going to peel off the onion...depends on how long you had it....and you have to go through it...HANG in there...and do not stop the medications as it will come back with revenge ..if you stop it....
 

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Posted by maureen2174 (Member # 11471) on :
 
when i first got diagnosed (by an ID doc) i was given 100 mg 2x a day of doxy and i did herx hard.... so it definitely sounds like a herx... only way out of this is through it, unfortunately...
 

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Posted by groovy2 (Member # 6304) on :
 
Hi Karol

It is very possible you are herxing -
even on this low dose -

I herx on every new med I have taken
in a hour or 2 -

getting well can be a no pain no gain
type problem -Jay-
 

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Posted by Karol (Member # 15831) on :
 
Well, I did stop the medicine.

Pain is one thing, I can pop Percocet and get by but I was not even able to walk......now that is something else.

My legs were not supporting me and there is no one here during the day to pick me up off the floor once I hit it.

I am frustrated but one good thing is one of the Angels here gave me the name of her LLMD and she takes my insurance.

I will be calling first thing Monday to set up a appointment with someone experienced who can help me.

Thanks for your replies. Today the pain has backed off some and at least I can get myself to the toilet.
 

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Posted by sixgoofykids (Member # 11141) on :
 
That is a herx!! My first herx left me unable to walk, too, but afterward I felt better than before. Unfortunately, we feel worse before we get better.

I don't blame you if you skip a dose or two, but I'd keep with the med!!! I had to ease into zith recently even after having been on treatment for a long time. I'm really glad I stuck with it, ramped up slowly, skipped a few doses, because now I'm feeling SO much better.

Hang in there! Don't stop the doxy, it's killing something.
 

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Posted by Karol (Member # 15831) on :
 
Yes your right............it is killing me!
 

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Posted by sixgoofykids (Member # 11141) on :
 

quote:

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Originally posted by Karol:
Yes your right............it is killing me!

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Yes, I know it feels that way. It's not comfortable nor fun when you stir up the spirochetes.
 

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Posted by mtree (Member # 14305) on :
 
Count me in too..........I herx bad on even the smallest dosage of doxcy....

once things get sturred up....its a battle to see who will cave first....me..the keets...or the herx....

I hope you get an appointment soon with the LLMD...you really don't want to be off the antibiotics....not at this point......

what did the doctor say that perscribed the doxcy to you??

mtree
 

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Posted by WildCondor (Member # 434) on :
 
maybe you should back off for 3 days, then restart. if it is indeed causing this large herx, you don't want to stop it completely because it is your body's way of killing the Lyme and you are feeling your immune system and all the toxins. the dose is inadequate and you may feel less agony if you kill the Lyme properly with 400-600 mg per day. Then again, you may have to go slow. Stay OUT of the sun, and get your supportive measures in place, like pain meds, tranquilizers etc so you can handle these herx symptoms, then try starting it up again, the right way. Good luck
 

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Posted by Karol (Member # 15831) on :
 
M Tree,

When I called the Rheumy doctor yesterday morning to tell them how bad I was, could not walk, sick, extreme pain...blah, blah, blah...

They said and I quote, "The doctor is not here today but we will leave him a message and he will get it on Monday when he returns"!

OK, BYE BYE NOW.

I was in tears, literally crying and this is the response I got????? Are you kidding me??

They never said do NOT stop taking the doxy or back down to 100mg a day instead or 200mg, etc...

It was pretty much like have a nice weekend and stinks to be you! Boy was I more then annoyed.
 

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Posted by jamescase20 (Member # 14124) on :
 
Want to hear how bad my herxing was?
1 bactrim, Sudden runs in the (within 15 seconds not kidding!) bathroom, and vomiting in the sink.

These runs and vomits occured on EVERY abx I took and each time, they slowly disappeared, so that was a heck of a herx is what that was!!!

Did you read my post, lyme is a paradox? Its evloved to trick the victim to NOT treat it. You kill it, it bites back...dont be fooled, but dont be stupid either!

Only way I knew it was not alergy is my family is not alergic, and I took these drugs as a child many times. Too bad not strong enough to kill the darn buggers.

Doxy makes me vomit. Minocin causes great pain. But thats because minocin is (mini..in your body its VERY small, so its VERY effective since this is a tiny bug...thats why its called minocin, for "mini" and I am serious...read up on net about it)

Minocin is so tiny some persons, usually black or hispanic get a VERY VERY rare side effect of dark blotts on skin, seems its mol gets stuck there. But this effect took about 20 years to even discover, so dont worry about that.
Minocin is a front line drug for lyme. Ask anyone who recovered about minocin. I am sure they will agree.
And doxy is used so much, I worry about resistence. Minocin baby. But it WILL herx you, thats the name of this game honey, sorry.

But the penniclins or ceftins (sewer mold-yes thats how it was discovered) reduced my fatigue and pain. But I think penny class are just "cover up the problem drugs, or an adjunct to, but not a complete cure. But I personally WILL take pennys, I am convicned they are a big part of this cure.


You know what, after everything, I think ampilliclln or amoxicellin, with lower dose augmentin, would be the best starter drug.

You should be aware taking tetras for months on end, can in itself cause a temp but very real feeling "autoimmune like" syndrone but its fully reversable, and worth it, I take it. But never for more then about a month.

If I was in your shoes I would take a pennicllin class in Dr B tick guide doses, or switch to tetra or the dredded but very effective minocin. Minocin seems to like my stomach, can take it empty with just a little milk, doxy, vomit city.

But I am a bit "outside the box" txing myself, and switching often, usually due to side effects, or tanking.
 

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Posted by mtree (Member # 14305) on :
 
karol..

....and thats the doctor that perscribed it??

He didn't call you back at all??

I had that problem years ago with several different doctors.....not a good feeling at all...sometimes worse then some of the actual symptoms...not getting the care you need....

...its all very scarey and overwhelming...

Did you ask to speak to him...and if not who is the covering doctor?? The covering doctor could at least tell you to stop it or not....

you are not alone with all of this.......so many of us here are either in your shoes or have been....

keep us posted..

mtree
 

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Posted by Karol (Member # 15831) on :
 
M tree,

There is no back up doctor as this Rheumy is a solo practice. I guess he went golfing or fishing?

It was the Nurse I spoke to and she was very matter of fact with me............just he is not here and wont be back until Monday.

I would hate to see how they handle a true emergency.

Funny thing is 2 weeks ago I called for something all together different and again, it was Friday and he was gone for the day.

Think I need his job!
 

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Posted by mtree (Member # 14305) on :
 
So you'll wait till Monday and give him an ear full......

I'm still thinkin you should stay on the doxcy.....
did he mention to you at all about herxing??

he should have........
if you read anything....read about the herxing......it can make everything worse....but its a good thing....
sometimes the symptoms do get so bad you have to stop the antibiotics...or lower the dose...he should have told you that as well....

hope tomorrow is a better day.....
mtree
 

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Posted by Karol (Member # 15831) on :
 
Nope, he told me NOTHING AT ALL!!!

All he said was once the Lyme is eradicated and it will be with 3 weeks of doxy then we will re do the blood work to look at Lupus again.

He did not mention anything about the possibility of me getting sick.

I am going on vacation from the 17th to the 24th and I knew I could not continue on the doxy. I would have spent my vacation in a bed or at a Emergency Room for sure.
 

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Posted by mtree (Member # 14305) on :
 
plus you can't be on doxcy in the sun....if you are going somewhere warm....

I was just away on vaca...and stopped the doxcy while in the sun.....

back on it tomorrow......

hope you feeling a bit better today.....
mtree
 

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Posted by Karol (Member # 15831) on :
 
Thanks mtree.

Yes, Georgia here I come.

I will entertain the thought of abx once I return.
 

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Posted by hcconn22 (Member # 5263) on :
 
Herx

It will get worse then better.


If you were dx with MS you must have bad symptoms and have had this for a while.

My western blot was 10 bands nine years ago and 10 bands 6 months ago, dont believe your Dr.

Go see a LLMD. You are really sick.
 

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Posted by Karol (Member # 15831) on :
 
Now that is concerning.

10 bands 9 years ago and all this time with a LLMD and still 10 bands.

I am confused about this.

Does this mean your not any better now then 10 years ago???
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by Karol:
Nope, he told me NOTHING AT ALL!!!

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He did not mention anything about the possibility of me getting sick.

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