posted
I started Minocycline about 10 days ago - 100 mg twice a day for lyme & a myco-coninfection. Is muscles twitching/spasms/jerking a common herx symptom ? I also feel hot (though no actual fever), am really tired, Fibromyalgia and joint sore and my eyes are (sore/burningish). I am mainly looking for an answer to the twitching/spasm issue since this was not present until today.
If anyone knows if this could be herx related to minocycline OR to any other antibiotic please let me know. Additionally if there are any suggestions on dealing with it, that would be appreciated as well.
Thanks
Posts: 48 | From New Jersey | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I do not know, but it sounds like it could be a mino herx.
I started mino two months ago on a much lower dosage -- 50 mg every three days. I could not even tolerate more than that for the first 6 weeks.
I also experienced that feeling of being hot, maybe a low grade fever, and being tired after last week increasing my mino intake to 50 mg/day.
Mino is a pretty strong abx, and crosses the bbb. Perhaps if these side effects of treatment continue, you can speak with your doc about cutting back and increasing more slowly? Hope you feel better.
Posts: 2557 | From home | Registered: Aug 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Good Gosh, you started out of the gate at full gallop!
My daughter has had to take a break after just taking 50mg minocycline twice a week.
Her spine is so inflamed (if it crosses the bbb, then I'm guessing the spine is affected) she has had to take prednisone to stop it.
She is still in pain, but it is improving.
We want her to stay on mino, as it seems to have helped many that we have spoken to.
Call your doctor and ask if you can ramp up slowly.
posted
I started with double that dosage, and it was unbearable.
The symptoms you described are part of what I experienced on the mino herx. The jerking / shaking especially was terrifying!
If the herx passes and is withstandable, I wouldn't worry. But if you feel it's too much, then def. talk to your doc.
I tended to get really anxious about having a herx. Taking the abx was such a production! I'd do breathing exercises, and try too hard to relax. It helped me to just take it with a lot of water and while watching a movie or sewing or something that distracted me so I wouldn't get too hung up on my treatment and create more of a reaction in myself. But my Lyme had manifested primarily as anxiety, so I don't know if that would work for you.
After several bad herxes and doctor visits, I finally stabilized on 50 mg twice a day. Then I had only minor herxes that were much more manageable.
Posts: 17 | From MD | Registered: Aug 2007
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Cobweb
Unregistered
posted
Early in treatment I was unable to tolerate Mino-thought I was going to die.
Now after two years of treatment with other meds, I can take the Mino-100mg 2X day.
I experience the twitching,back pain, fatigue, ears ringing,heahaches but not the Herx from He!!.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Usually herx's anyway with me were so ran together at first I didnt recognize them but after 3or4 months they came once a month every 28 to 34 days. Its because I was so sick for so long before treatment.
Get on probiotics taken everyday like magnesium,complex b vitamin and acidophilis, yogurt no sugar,multi vitamin,omeg 3's,cq10, and never take them at the same time as abx's always 2or3 hrs before or after abx's
Always drink lots of water when taking anything and especially during herx's.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Hi all! I'm only into my second month since dx. I'm on Mino 100mg, twice a day also (2nd month of tx with it). Something I didn't see posted yet is the unreal sunburning potential. I'm pretty fair-skinned, but I have never burned so quickly in all of my life!! I kid you not, less thatn 10 minutes in the sun & I will have already sun burned !! My LLMD told me he didn't expect me to hers too much because of how sick I've been for so long a time (20+ yrs).I have experienced a slight increase in the muscle spasms(but it's now where I cannot do anything that takes intricate hand work, or hand-eye coordination).I guess my sx are/were bad enough to start with that I'm really not noticing anything more than a slight increase in the other sx. Hang in there!!
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Hang in there a few more days. My experience was that the annoying side effects/herx on mino (I started on the same dose as you) resolved themselves after a couple of weeks. It should get better soon, if you can wait it out.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Thanks for the replies. In addition to these
Twitching/spasms/jerking muscles feel hot (though no actual fever) really tired Fibromyalgia flaring joints sore eyes sore
I am now getting increased floaters, hot flashes (muscular), headaches, real sensitive to lights, tingling (pins/needles), some hot pins/needles, and very forgetful.
Are these also herx related ?
Posts: 48 | From New Jersey | Registered: Aug 2007
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posted
With the disclaimer that I'm not a doctor...
Sounds incredibly herxy to me. Minocycline crosses the blood brain barrier well, so it causes a lot of neuro symptoms during die-off.
That hotflashy/sweaty/burning thing is something many, many of us have experienced. Sometimes it is Bb, sometimes other pathogens as well (such as babesia or C. Pneumoniae.)
My partner just began Mino treatment, after years of being diagnosed as having MS --- (we are a new couple, and I hounded him until he got tested for lyme.) His herx is almost exactly as you describe yours. We're pretty sure he has C.Pneumoniae as well, and that has a die-off reaction much like the flu....
He's sweating, feels fevered (though only ran an actual fever for a short time), is extremely fatigued, achy, has respiratory flares, and his previous neuro symptoms are also changing.. sometimes better, sometimes worse than before treatment. He thrashes, moans and sweats at night, and wakes up a lot.
I'm quite certain this is a herx in his case...
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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