Has anyone with CNS or neurological Lyme experienced a severe or pronounced Herxheimer reaction when they started minocycline? I have had Lyme (and, as it turns out from recent blood tests, babesia and mycoplasma) for 11 years and recently started minocycline, 100 mg x 2. My main symptoms have been neurological. Two days after starting the mino, I awoke with a few hours of nausea, which went away, followed, over the next few days, by a feeling that my tongue (which has been affected by the Lyme) had "seized up," along with increased shortness of breath. This was not an allergic reaction, because, at the same time as certain symptoms got worse, I felt increased energy, and my arms and legs, which have been weakend by Lyme, felt stronger and more "normal." Has anyone with neuro or CNS Lyme had a similar experience? I assume that, after 11 years, the Lyme is now in the cell wall deficient form and might be reacting to the mino. Thanks so much! You all are great. [email protected] Posted by Ms. Myoclonus (Member # 6750) on :
Hello, I have mostly neuro symptoms: myoclonus (involuntary muscle jerking), walking like I'm drunk, brain fog, sound sensitivity, etc.
My first couple of weeks on mino. were difficult as I could barely walk upon waking in the mornings. Fortunately, things leveled out eventually, and I am having few problems on the mino. now.
Take care, Ms. Myo
Posted by lymelady (Member # 6207) on :
Absolutely!
I have severe nervous system lyme and mino nearly killed me even on 200 mgs every other day. Call your doctor and see if you can cut back (you are taking a big dose) or make sure you are detoxing as carefully as you can. When I herx I just sweat in a sauna, take long epsem salt, baking soda baths and coffee enemas; all safe ways to get rid of the toxins. YOur ph levels will be very acidic (due to toxins) so eat lots of green foods (vegetables) or supplements. Mino is very hard on neuro lyme. Also watch and take care of yeast increase which will make you symptoms even worse.
Good news that you had some improvement, I had nothing that improved, just hit the deck with a thud.
Good luck Lymelady
Posted by kgg (Member # 5867) on :
You are not only killing lyme critters but the mycoplasma as well with the minocycline. And I agree that 100mg twice a day is a heavy dose to start with. Be careful and contact the doc. Mino herxes seem to be especially difficult and prolonged.
Best, Karen
Posted by ticktox (Member # 6739) on :
Minocycline can be a difficult drug to take when you have neuro Lyme. My daughter, who has been on many strong abx regimens, herxed badly on mino. She started on a low dose(50mg) and still found it caused severe herx. When she went to 1oo mg it was even worse. She didn't like what it did to her head. It is supposed to be an effective abx for Lyme if you can tolerate it.
If it becomes intolerable try cutting your dose in half. My daughter did mino for four months but has found Ketek to be a more effective drug for her. But as we all know, its different for everyone. I wish you well in your battle with this horrible disease.
Posted by docjen (Member # 7510) on :
I have severe neuro lyme and am on mino, but I take 100mg every other day (Marshall Protocol). I have found that the CNS symptoms will wax and wane (just as everything else). I have horrible muscle fasciculations, weakness, headaches, dizziness, vertigo, slurred speech. I also find that the CNS symptoms make sleep absolutely impossible so I have to dose up pretty heavily to get some rest (which seems to be crucial). My worst stuff passes in a few days it seems, and then will come back around again unfortunately. I am only in my second month of tx so hopefully sx will dissipate and be less frequent. Good luck!!
Posted by duramater (Member # 6480) on :
Am also on mino 100 X 2 daily for both severe neuro & cardiac symptoms. Yup, definitely can be rough in some ways at first, but I must say that relative to doxy which made me feel like not a single mitochondria was working in my body ("energy suction zone") the mino does not yield that particular reaction in me.
While I am still having some flares, I think the overall direction is in the improvement department. I hope mino works as well for you as I'm hoping, suspecting, and wishing it's working for me.
I'm getting ready to add zith into the mix...
Posted by Squeegee (Member # 7219) on :
I have neuro Lyme (as well as musculoskeletal) and have herxed quite bit since starting Minocin (300 mg./day). This seems to be a higher dosage than I see from other posts.
I was very dizzy for the first 2 weeks (med. side effect, not herx). Also nauseous which continues and is most likely a herx as I've had it all along -- just a bit worse on meds.
I've also had headaches and vertigo for the first time last night. The rest of the herxes are the musculoskeletal variety. Guess this is pretty effective stuff!
Posted by hiker53 (Member # 6046) on :
I felt dizzy and on day 4 of taking mino felt terrible. Then it got much better and I took it with no problems for 6 weeks.
Good luck.
Posted by johnlyme1 (Member # 7343) on :
Mino was very hard for me - the 1st four days were very bad - It was like a full nuero attack - balance issues - head issues - ears - throat - some one talk me to get some food and water and hide the car keys - they were right - but I also heard that it is very effctive if you can stick it out -