Fiance has been going through a very rough time. He been in treatment with LLMD for the past 11 months, after both chronic (15 years) and acute (Nov. '04) infections. He's taken Tetra, Biaxin w/Plaq, Dr. C's babesiosis protocol, and Rifampin.
He had been doing well on Rifampin--it had been going after his stinging/burning skin condition that nothing else had touched. Then after about 2-3 months on Rifampin only, his cognitive/neuro symptoms started coming back.
He started on Minocycline about 10 days ago. Mino is alternately helping immensely, and beating him to a pulp. All the stuff other threads have mentioned--dizziness, fatigue. After a great weekend, he's been non-functional for the past 2 days. I know several people have said that if you can withstand the Mino herx, it can be a great drug.
I know everyone's reaction is different, but it helps so much to hear how other people have done. Anyone have any new infor to share on Mino, with or without Rifampin?
He also takes probiotics and Nystatin for yeast, and does foot patches, lots of water w/lemon, and baths for detox. He may be starting Armour Thyroid; needs to get bloodwork done first.
I know the length of his treatment has not been long, relative to the time he's been infected. But it's just so discouraging sometimes...I know you know that...Any words of wisdom?
Thanks for letting me vent, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
I tried doxy in heavy doses for 5 weeks in August/Sept w/o success. I found a different treatment plan (Marshall Protocol) which includes minocycline (and others). My "herxing" or reactions is very different and far more effective than before (as expected). I believe I am on the right track with the MP (see today's post).
Mino is thought to penetrate tissue more deeply than other types of tetracyclines; and this is critical since CWD bacteria like Borrelia "sneek" and "hide" deep into nerve (and other) tissues.
It seems that the only effective approach for Lyme pathogen eradication involve multiple antiobiotics in phases and long-term (12-24+ months). Figure out which one is best for you...even though it's a very complicated quest!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Vermont_Lymie
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posted
What dosage mino are you taking, if I may ask? Both Cold Feet and Aviva, your fiance? (I hope he is feeling better, it sounds like a herx in my non-medical opinion!)
I have been taking 4g/day amoxy for past four months or so, and made some good progress at first. But my neuro symptoms are beginning to come back, and I think I will need to switch abx soon, I hope -- I have late stage untreated lyme for several years.
many thanks, ella
Posts: 2557 | From home | Registered: Aug 2006
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Geneal
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posted
Hi Viva,
I myself am having great difficulty with minocycline. It gives me chills, and really severe vertigo.
I have two small children and need to be able to walk at least five feet without falling.
My LLMD may be considering an alternative antibx. as I am to also be taking malorone with it.
Currently have been told to hold off on minocycline, but after five days without it my Lyme symptoms are coming back with a vengence.
Good luck. Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Minocycline can be a great drug to get at neuro syptoms, but you may need to use it gentily to start.
I have taken it many times and have had to start very slowly when I forst started taking it. As for slowly I mean I started with 100mg every other day for over 2 months, and that was a very effective dose at the time. Now 2 years later, I am taking 200mg/day sucessfully.
It would be good to communicate with your LLmd and figure out a good dose of mino. this is a very powerful drug for neuro lyme, but your still have to live with yourself. I wish you well.
Posts: 663 | From NH USA | Registered: Sep 2004
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posted
Thanks to all of you for your replies. I truly appreciate the input.
Vermont, my fiance is currently taking 200 mg of Mino/day. He ramped up pretty quickly from 100/day; even went to 300 (the "target" dose), but backed down pretty quickly.
Geneal, what dose are you taking? So sorry you're going through the vertigo and chills.
Achey, you're making me think we need to back down to 100 mg/day and see if that makes a difference. Have you been taking the Minocycline for the entire 2 years, or have you interspersed other drugs?
Cold Feet, thank you for the info on how Mino works, and the reminder to try to be patient. I'll read about the Marshall protocol; always good to have more information in your back pocket.
I'm really hopeful about the Mino, since a number of Lymenetters have mentioned its positive effects on cognitive/neuro symptoms. Just wish it weren't so nasty in the interim...
My best to you all. More thoughts on this are most welcome!!
Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
hi viva I have taken mino in between other treatment over the course of my 2 yrs of care.
Posts: 663 | From NH USA | Registered: Sep 2004
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beachcomber
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posted
Minocin (Minocycline) has been tough for me. However, it has afforded me some very lucid and functional days.
I started at 200 mg/day. I was literally sliding down the walls. I was so very dizzy and sick on that dose. My MD and I tried pulsing but, found that the days off the Rx didn't help me to build up tolerance to it.
I restarted in Nov. at 25 mg/day for 14 days. I am on 50 mg/day now. In a few days I will go up to 75 mg, and will keep ramping up slowly until I get to 200 mg/day.
This med is not for the faint of heart, if you are really sick. However, I know people who have no trouble with it. Coincidentally, their titers are negative now and no positive bands. Both are easing off Minocin, as they feel they may be "better" now. One was treated for 10 years!
Am holding out hope this med works well for me. Hang in there, if you can. It is not easy to feel so dizzy, head pressure and fatigued.
I was misdiagnosed with MS for many years, and just started treating for Lyme. Started on Doxy 200mgs/day then 300mgs daily; after 6 weeks Doc just changed things--
200mgs Minocycline and 200mgs Difulcan.
The vertigo along with a bit of nausea is very yucky/chills too! It's only Day 5 --and I already ``herxed'' with some old neuro things charging back.
Geneal I can't imagine having to care for others at the moment. Hang in there and I'll be waiting to see how you're doing.
Viva--keep him motivated --- It will help me!
I'm so glad to be able to read other peoples reactions to mino.
posted
Minocycline can cause SEVERE herx reactions, even head swelling , my doc warned me.
If I were having such a severe reaction that I could not get up and function or was alarmed by the severity , I would skip a day of the med then lower the dose until I built up a tolerance . The initial die off can be scary and there is no need to be a martyr since lyme is a slow growing bacteria, and minocycline often can penetrate the tissue better than other drugs.
Many people HAVE to start at a fairly low dose to begin.
posted
Thank you all for this feedback. Tory, I agree that it's incredibly helpful to hear about other people's reactions, even though I know how individualized responses are. But there's definitely overlap.
And I appreciate the advice to back off when the herxing gets severe. Geneal, fiance's LLMD always says that "the turtle wins the race". Sometimes my sweetheart wants to be the hare--bad idea! But he's now gotten this reminder AGAIN, and I think he actually heard it.
The update is that after 2 awful days, fiance was able to put in a full day of work yesterday, and was not wiped out at the end of the day. Hearing the comments that the Mino can really penetrate the cells, and help with neuro symptoms, is SO encouraging. It helps us both stay the course.
Tory, I hope hearing about fiance's upswing helps. I'd be interested in knowing how the Diflucan is going with you. Fiance takes Nystatin, but his diet isn't perfect yeast-wise, and I've wondered about this. If we want to keep the thread focused on Mino, and you're willing, maybe you can PM me about this?
I'd love to keep this conversation going--maybe we can be "Minocycline buddies?"
Best to all of you, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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Michelle M
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posted
Hello Viva.
You sound like a wonderful fiance. Does he know how lucky he is to have someone so willing to become knowledgeable about his illness? Of course he does. Good on you!
I am a neurolyme person with babesia, treating for about a year and a half.
I started Minocycline yesterday. LLMD put me on 300 mg per day. I'm to stop everything else except babesia regimen of Mepron/Art/Zith.
Even taking just ONE 100 mg Mino had me dizzy in the space of several hours. Disoriented. Feeling kind of outside my body. So out of it I was falling asleep while standing upright. Slept on the couch mid-day. This morning I woke to a splitting head.
I'm to gather that's a good thing.
The idea of taking THREE 100mg pills has me quaking in fear.
It's encouraging that your fiance did better after a couple days. That's giving me courage to go run some water and down my medicine!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I have been on mino for the last six months, adding Diflucan a month ago (100 mgs twice a day of each).
Have felt like crap the whole six months with no noticeable improvement.
At my visit with Dr. P in CT on Tuesday, he decided that the mino was not as effective for me as he would like. I will be off all meds for 10 days, at which time I will start Biaxin and Mepron.
Dr. P warned me that this change could hit me hard. Since I have already been in Hell for six months, how much worse can it get? I said bring it on.
Wish me luck. . .
Posts: 78 | From Rhode Island | Registered: Jul 2006
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I was misdiagnosed MS for 6 years. Had a positive Igenex test last month (had a negative Elisa at the time of my MS dx).
Think I've had Lyme for ten years. Started looking into it when I herx'd big time on Cipro last summer (for a UTI).
If I knew then what I know now...
Posts: 78 | From Rhode Island | Registered: Jul 2006
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Geneal
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posted
Hi all. Found a really good article yesterday evening comparing doxy to minocycline.
According to the article, doxy absorbs five times faster into lipids and mino absorbs 10 times faster.
Mino has a deeper penetration into deep tissue and CNS than doxy.
Also noted that mino has a tendency to "settle" in middle and inner ear causing dizziness and vertigo.
Now I know why it makes me so dizzy and sick.
Also noted that it was better to start at 50mg a day for a couple of weeks and build up from there.
The headache is a side-effect of mino according to this article. However, I am not sure as of yet how to tell a herx from an allergic reaction from a regular side effect of a med.
The article helped me understand as to possibly why I had vertigo so bad on it.
Also started on 300 mg a day. Oh well, I am learning slowly and painfully as I go on.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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beachcomber
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posted
Geneal: Can you tell us where you found the article? Would love to show it to my MD.
Have been on 50 mgs. for about 5 days so far, up from 25. Am dizzy but functional, fewer headaches but fatigued. Managed to work a full day today. Will add in another 25 in a few days. Seems the ramping up is working but slow going.
posted
Seems like the majority of us are "old timers" with the critters....
and reacting much the same with Mino. I just have to say again how much this has been kicking my butt!
Yes, heard of getting deep into the tissues and good die-off in the cells, but whew! what a ride!
Only on 200mg a day along with Difulcan and also to anyone on 300/day.
Nice to be in good company, Tory
Posts: 158 | From PA | Registered: Oct 2006
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Sammi
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posted
Minocycline can cause dizziness. In my case it went away in two weeks, but I did have an intense herx shortly after starting it. Believe it or not, my dose is 400 mg daily.
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My son was just put on minocycline yesterday. We're waiting to start on Sunday.
He will be taking 400mg daily (mama mia)!
Starting with 50mg for the first week and 100mg the second week and so on til he gets to the 400mg.
He is still having the terrible neuro problems along with blurred vision, nothing has touched these problems yet (augmentin,rifampin,cipro,mepron). Still on the mepron.
His heart palpatations have decreased by 50% though! So we do have some improvement!
Hopefully this will be the one to get at these stubborn neuro problems.
We're really happy to hear that so many have improved with this med!
Fingers crossed, ~Ma
Posts: 70 | From Central NY | Registered: Sep 2006
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Geneal
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Member # 10375
posted
Dear Beachcomber,
I did a quick online search for minocycline versus doxycycline for lyme disease.
See if you can pull it up. This article was very informative and gave me insight as to why I was not tolerating mino well.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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trueblue
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posted
quote:Originally posted by Jennifer Geddie: Minocycline can cause SEVERE herx reactions, even head swelling , my doc warned me.
If I were having such a severe reaction that I could not get up and function or was alarmed by the severity , I would skip a day of the med then lower the dose until I built up a tolerance . The initial die off can be scary and there is no need to be a martyr since lyme is a slow growing bacteria, and minocycline often can penetrate the tissue better than other drugs.
Many people HAVE to start at a fairly low dose to begin.
sorry for the brief highjack...
I've been reading this and am having the same experience with 100mg/day of Doxy. I had to stop in 3 days and don't know how long it'll take to clear.
Did all you guys have no problem with Doxy and only with the Mino? it's looking to me like if I even start Doxy again I'll ahve to start at around 25mg/day. I wonder if it's really worth it.
Really sorry to interrupt, as you were...
drat and I couldn't get intot Geneal's article.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Michele, I HAVE a wonderful fiance! I just take that "sickness and health" thing seriously...and everyone at Lymenet has been instrumental in this ongoing journey back to health. We'd still be nowhere without all of you.
I couldn't get into the article Geneal mentioned via that link either, but if you just go to www.postgradmed.com and type "Minocycline" into the little search box at the top right, it will pull the article up. Geneal, you're right, lots of good information in there. Thanks so much for sharing it.
More encouraging news--after a mini-backslide yesterday, today fiance is back at work, feeling clear-headed and pretty energetic, despite a sleepless night (he thought maybe he used up his sleep quota early in the week!). I know we still have a long way to go, but I am encouraged by his early response to the Mino, especially WRT the neuro/cognitive symptoms He's still taking 200 mg/day, and says he can live with the dizziness.
He's also being very diligent with his detoxing. That's got to be helping.
Thanks to all for keeping this conversation going.
Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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trueblue
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posted
Thank for directing me how to get to that link, Aviva. Glad to hear your Fiance is seeing some improvement.
Thanks Tory, the problem I had with the Doxy is exactly what you guys are describing with the Mino. Which is what, initially, surprised me. (The doc said to stop for a couple of days and see what happens and we'll go from there.)
1st baby dose of 100 mgs/day was brutal and the second day a wicked headache on top. By the third the brain swelling feeling was too, too intense. Pulsing top of my head and temples, ears ringing, pressure in the eyes, double vision (seeing colored patterns too),stiff neck.... Feeling like the bones in my head want to blow out.
Ok, that's enough for the whining. I stopped the Doxy. I've taken a lot of meds in 13 years(mostly off for the past 8) and only Doxy does this that I can recall. I've tried to take it 3 or 4 times.
I'd like to thank you all. What I learned, just now, is that I may be getting this extreme a reaction from the Doxy because I do need it. Darn!(I'm probably lucky no one has tried to give me Mino, yet.)
I've decided to give it a few days and start at a truly baby dose and go from there. If it works for the Mino why wouldn't it work for Doxy.
Thank you! I'm not sure I'd have gotten that otherwise.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Sammi
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posted
Hi Tory. I am on Mino and Tinidazole.
For me the dizziness was pretty bad, but it did get better in a couple of weeks. I think it is listed as a side effect.
Posts: 4681 | Registered: Oct 2000
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I too am learning so much! Thanks Aviva! for starting this thread!
Sammi- you're my hero! Wow!! Mino and Tinidazole
Can you share how long you've been bugged? (humor)
Trueblue- It's amazing that an antibiotic would make you/us feel so bad! How many acne sufferers walk around with that laundry list of ``symptoms'' from Doxy? or any antibiotic? give yourself time...trueblue, you'll build up to 300mgs and will be sailing through it!
Does anyone take vitamin B for the dizziness? Has anyone read about it being beneficial?
I do find it interesting to hear that some of us get advice to go slow and steady, and others hear let's be as aggressive as can be tolerated. hmmmm
Dare I say this is why there are sites like this one? So people like us can share and compare our stories and circumstances?
WOW- 400mgs of Mino someday I want to be able to say that!
Posts: 158 | From PA | Registered: Oct 2006
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posted
True Blue : I have been on doxy a year now. I had to start out at 50 mg for a couple of weeks. I stayed at 100 a few more weeks. It took several months to be able to tolerate 200 mg , which is all I take now .
I had very strong herx reactions to doxy , and could NOT tolerate a high dose to begin . I felt EXTREMELY ILL and wanted to cry all of the time. I was sick as a dog and almost a vegetable.
I will probably switch now to minocyline.
I found pulsing the doxy every other day helps me function , now that I am at 200 mg . I also take a detox product called Fiber fusion by enzymatic Therapy , which binds to toxins in the bowel . I take three capsules daily with a large glass of water and find the herx is definitely not so nasty . I feel much worse if I forget and skip it .
I can not imagine taking 400 mg of doxy daily , as some do.
I would be near death and my guts would not be able to tolerate it AT ALL ( Nausea) .
The hard thing about lyme is that there is NO SURE FIRE way to attack - even with a " LLMD" as everyone advises .
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you Jennifer. I'm going to wait this bad reaction out and then restart on tiny doses and see how that goes.
Thank you for sharing your experience.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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In my non-medical opinion, that sounds like a very sound strategy. I agree with Jennifer that it really is every person for him/herself, especially for the "right" dose of medication.
I know fiance's LLMD's approach is to always start meds at a low dose (I remember for Flagyl, it was "a sliver of a pill," if necessary), work up slowly, and back down/lay off/start again if the herxing is too heavy.
Let us know how it goes.
best to everybody, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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Boomerang
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posted
Hubby is taking a few "slivers" of Flagyl again........ I sit and worry how it will affect him.
He still has lots of brain fog on some days, but yet we can see improvement. When I think back on how he was over a year ago, he has made great progress. I hope that he will soon be over that final hurdle.
Posts: 1366 | From Southeast | Registered: Sep 2005
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It's Monday--I had quite a weekend! Had to share my Mino story.
The good doc mentioned my old scar/lesion and getting results from it.
....originally I had extreme vertigo and my left eye moved horizontally left to right at 300 miles per hour or so I was told! Back in the day a week of steroids fixed me right up! 3 yrs later the MS diagnosis...
this past weekend...I found myself dizzy (needed to be flat) and yesterday add nausea to the mix; again I needed to be flat.... I believe I HERXED! I believe I am herxing!
Only up and around a few hours; can't yet tell "how" I feel, but not too dizzy or nauseated at the moment...
Gosh, I love it when the doctor is right! Seems to me that this does indeed penetrate into the cells...I went from calling him to back off this stuff ---to realizing my particular "problem" could be exactly what the doctor ordered!?
Hanging in there, feeling whoosie, but at the same time feeling better today!
Thanks for your words of encouragment! It is hard to believe that herxing will make us feel better, but include me in the group of people who can attest to this phenomenon! Wow, what an experience!
I feel fantastic today. Well, moving towards fantastic!
I am now ready to begin to believe that I can be like you Sammi and increase to 400mgs a day: if that's what's in my future!
Keeping the faith-committed to win the fight- back from the darkness, Tori
Posts: 158 | From PA | Registered: Oct 2006
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posted
Hi, I'm new to the list and have just started Mino, been on them for 2 weeks and the nausea is a bit of a problem - not sure if it's the Mino or herxing as I had bad nausea prior to meds, but I am going to hang in there.
I've had Lyme for 33 years and went undiagnosed but was tested for everything and finally they just decided I had some type of ImmunoSuppressant disorder until I found this doctor who is also a Naturopath - great!
I've had all kinds of symptoms but the worst one right now is swelling in the legs and inflammation.
When I started the Mino it seemed to get better and now its back but not as much and not as bad on the inflammation - kinda comes and goes, could this be part of the herxing?
I've had severe joint pain for years and my husband got me started on Panothenic Acid just before I started the Mino and I haven't had hardly any since, also I take B-Complex and C along with it and Aloe Juice.
My doc said to take Acidophillus for the yeast and to eat yogurt, but still got it so have been using OTC Monistat - any other suggestions? Thanks
[ 10. December 2006, 01:24 PM: Message edited by: MtnMama ]
Posts: 1 | From Washington | Registered: Dec 2006
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trueblue
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posted
quote:Originally posted by viva: Trueblue,
In my non-medical opinion, that sounds like a very sound strategy.
Let us know how it goes.
best to everybody, Aviva
A quick update... I restarted at 50 mg of Doxy for one day and that was still too much so went down to 25 the next. too awful still. The LLMD he said I was having a toxic reaction and marked my chart accordingly.
I had those reactions from an hour after the first pill. It wasn't a herx just something I should never take. I tried, again; now I know.
Thank you all for the help, assurance and advice.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
hi, lots of good info. i tried rocephin-never got over 125mg/day. the herxing was so bad i thought i was going to die.
then i was started on 125mg/d of zithromax. herxed on that too.
now i'm on 125mg zithromax every other day. start ing to herx on that. trying to ride out the herxing. is ths possible? can i get to the other side of the herx and start to tolerate my antibiotic. i'd like to be able to get up to theraputic levels. Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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posted
I'm not GLAD to hear that you are all having such a hard time with mino, and especially doxy (what I've been taking) but at least I know I'm not alone in this misery.
I took 100mg doxy twice a day for almost six months until I thought I would really have to kill myself I couldn't stand the pain.
I'm taking 100mg once a day now, and still get to the point of no return, and have to take a day or too off when it gets too bad.
I couldn't tolerate amoxicillin, herxed on chlorella and everything else I've tried looking for some relief.
I do think my energy level is up but I'm still waiting for some resolution of major symptoms.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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I too am on Mino and started on Doxy. I luckily didn't have as hard of a time as some on this post (poor Trublue), but Mino threw me for a loop! still is actually...
I'm not a doctor so keep that in mind, and am really nothing more than a newbie to all this: but my doctor mentioned that Mino gets deep inside the cells (good die off).
My for instance is this..Originally (18 yrs ago)I had very bad vertigo, eye movement,numbness,nausea etc. for weeks.
When I was going to start Mino the doc mentioned that some of this should/would come back!? I asked if that meant I shouldn't panic if some of this nasty stuff lasted for a few days, he said no don't panic. So, I sort of panicked but decided to hang in there! and it got better I'm no longer dizzy or nauseated!
Please don't misunderstand = there is a fine line as to what to tolerate and what we can tolerate.
It obviously was a herx! and thankfully I got better!
That's our life. As I understand it.
We herx and we heal. We must herx to heal. If we don't heal we haven't herxed!
I love to herx!
I hope Mtnmama I didn't lose you....talk to your doctor if possible. Don't lose faith, you will feel better.
Read and read some more and yes, please take probiotics and start right away.
Seems like I left out the most important part of your question-
Talk to your doctor of course and then also read http://www.ilads.org/burrascano_0905.html Dr Burrascano explains all the supplements that are important to include and why it's necessary to include probiotics.
Posting here and/or reading past posts especially about the importance of probiotics can be found here on lymenet.
Take care, tori
Posts: 158 | From PA | Registered: Oct 2006
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trueblue
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posted
quote:Originally posted by tory2457: So, I sort of panicked but decided to hang in there! and it got better I'm no longer dizzy or nauseated!
It obviously was a herx! and thankfully I got better!
tori
Yay! Tori, I love when that happens. Things actually do get better.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Hi. I registered to this list today. I come often and search for answers to my personal questions but have been too shy or whatnot to actually register and reply. The current discussion about reactions to mino hit a nerve today. I just started taking mino last wednesday and feel very funky (kinda like I'm drunk, working in slow motion, fuzzy head...). My MD told me to take the mino for 10 days and to stop if it wasn't working (i.e. didn't give me a herx). Does any have any suggestion about how I will know the difference from a herx and the side effects of mino? Thank you so much.
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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Sammi
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posted
Hi Allie, welcome!
What dose are you on? To me it sounds like you are herxing. Minocycline made me very dizzy for a couple of weeks until my body adjusted. When getting treated for Lyme, it can take time and it is normal to feel worse before feeling better. Herxes can be scary, but it means the meds are working.
It is good to document your symptoms daily. One way to do this is to list the three main symptoms you have each day with a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.
Posts: 4681 | Registered: Oct 2000
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The dizziness for me has gone away. Adjusting seems to be what you're going through along with herxing. If you can hang in there and get through the herx, the Mino will be doing it's job!
Keeping a record of how you feel it a great idea!
Having others share their experience has also been invaluable.
Thanks to everyone, tori
Posts: 158 | From PA | Registered: Oct 2006
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Glad to hear some of you have evened out on the Mino. Am looking forward to that day. I am still struggling with the dizziness and fatigue. The head pressure is starting to wane - a big relief.
This is a very helpful thread. Am not throwing in the towel yet!
posted
Thank you so much for replying -- I've never participated in a discussion group before. YIKES.
This is my story -- I have neurolyme pretty bad (thinking problems, numb back, itching, burning on back, arms, legs, anxiety, blah blah blah). I've had pretty bad symptoms for 2 years. I do have a fantastic LLMD. After more than one year on other antibiotic regimens, I took a month of fluconazole last month and the neuro symptoms were huge (huge herx). My LLMD was very pleased.
I requested he give me as much junk as possible in addition to more fluconazole, to really give those germs a kick (I always ask for the most he'll give -- he's conservative but good). Hence the mino. Due to side effects, he told me to stop the mino after 10 days if I didn't see signs of a herx. Unfortunately the side-effects of mino are similar to my lyme symptoms...
I'm taking 100 mg 2x per day. I will start fluconazole on Sat. My skin is starting to get really prickly (week into mino), so I think I'm migrating from side-effects to a herx. Therefore, I will stay on the mino and attempt the combo with fluconazole.
I think I might really like being part of a discussion group. I was really dismayed/relieved/comforted that you actually wrote back.
BTW -- I do keep a log. Every day I write a line or two about symptoms/severity.
thanks so much! Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
Gee Allie, I too am a newbie and the whole discussion thing is new for me too! It was the topic of this post that I seem to continue to read and post--yikes!
I only started treatment mid October...went from 200mgs/Doxy per day to 300mgs/Doxy per day. Then started on 200mgs of Mino and 200mgs Difulcan / fluconazole. My doc states great cell penetration. Yeah, I have to think he's right!
Beachcomber, good to hear you're hanging in there too. I can relate to the extreme fatigue, still a bit of dizziness and head pressure or is it fog? This is not a joyride!
I have been so thankful to have all who post here share their experiences...I speak of Sammi in particular because she/he is up to 400mgs of Mino a day! WOW !
I can only hope to get there...
Allie, when you say ``side-effects of mino are similar to my lyme symptoms...'' what do you mean? Isn't that a herx? I'm asking because I think I would be able to describe the same. I was/am a MS patient and my exacerbations from the past have reared their ugly head - so to speak- I guess now the term is herx.?
I do have a question that I think I can answer, yet hope someone else does. Obviously, Minocycline causes dizziness...that seems universal here. My particular question is: Is it (the dizziness) a drug reaction? Or is it a lyme related lesion or scar or whatever..... I continue to ask myself the same question-do people who do not have Lyme experience the same dizziness?
And I wonder how Trueblue is doing?
Best to all, tori
Posts: 158 | From PA | Registered: Oct 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by tory2457: And I wonder how Trueblue is doing?
*looks around* Me?
I'm not on any meds at present and am waiting to get rid of a dodgy gallbladder and then give Biaxin a try.
I'm not sure but it seems to me when I looked up Doxy and Mino, I believe dizziness was listed as a side effect of Mino. Not that that doesn't mean it isn't also a herx thing.
It seems to, mostly neuro, me that many different ABX make me dizzy or give me that (underwater getting hit in the head with a wave) vertigo thing.
I hope you're all holding your own.
As an, not really, aside... I do believe slow and steady wins the race. So if you find you cannot take the same amount of ABX, or anything else, as other people don't sweat it. Every person is different and what works for one doesn't necessarily work for another.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Tori:
The dizziness is a side effect. My assistant does not have Lyme. She took Mino for her skin and said she felt like the earth was moving in waves the whole time.
Yup, it is headache/head pressure. The brain fog is just one of those lovely accessories of LD. I feel like my brain is getting too big for my skull a few hours after taking Minocin. It doesn't last all day like it used to. Sometimes a little bit of coffee helps to lessen the pressure. Of course, the java hurts my gut. No winning (yet).
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