posted
Hey all , went to see Dr. M today, first time in 2years, he put me on Minocin and said it is anti-flamitory also and would help my pain. Since that is my worst symptom.
Has anyone had bad herx on this? Has it helped anyone? Just feel like since i've had this disease for 14 years that i should be on IV's but i'll just do what doc wants me to, and see how it goes.
What side effects did you have? Thanks for your replies!
Amy G
Posts: 33 | From kentucky | Registered: Mar 2007
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posted
I forgot , the doc did tell me that i didn't have fibromyagia(sp?) so that was a good thing, but that don't make the pain go away regardless haha
anyway i hope this med. works....thanks
Amy G
Posts: 33 | From kentucky | Registered: Mar 2007
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posted
I forgot , the doc did tell me that i didn't have fibromyagia(sp?) so that was a good thing, but that don't make the pain go away regardless haha
anyway i hope this med. works....thanks
Amy G
Posts: 33 | From kentucky | Registered: Mar 2007
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tailz
Unregistered
posted
Minocycline gave me the worst herx - turned my tongue black and my teeth grey - but it was the only abx to help clear up what had become years of chronic diarrhea - which had gotten so bad that I was diagnosed with malnutrition (finally!).
My shoulders, neck, head hurt so bad. I actually had to stop after about a week to allow my body to detox.
Google 'microwave sickness' though or 'electrical sensitivities'. This was a huge part of my problem.
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posted
I had a Really bad headache the first month that I was on it. I'm on my third month and feeling better that when I started. This antibiotic crosses the BBB. I was on IV Rocephin/Doxy
about 2 yrs ago for about the same amount of time, and I would say I am getting the same, if not better results on Mino. One thing that I've
noticed is it has helped w/my anxiety, brain fog, and fatigue. It hasn't really made a difference in my arthritis symptoms, yet. The
drawback for me is acne and itching on my lower stomach (waking me up at night) that has improved w/duration of treatment.
Posts: 418 | From NJ | Registered: Sep 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter started it a couple of months ago. The herx/flare was so overpowering, we had to cut the dosage in half and start with 50mg twice a week.
She is now up to 100mg 3x weekly, and said her back pain is 75% better, to the point that she is doing exercises in her room.
It's been a good drug for her, so far.
By the way, it's supposed to be the drug for acne, but her face exploded. We think it's due to the lymph glands being overloaded and toxins comeing out through her skin.
There has been slight improvement in the past month, and we hope for it to continue.
She is coming up on her second anniversary of treatment. She's been sick for the past six years.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Low-dose minocycline has been very good for me. I started at an even lower dose; 50 mg every three days -- it is a powerful drug for those with late stage lyme.
I herxed hard for maybe the first 6-8 weeks on mino, even at this very low dose. That included headaches and intensified lyme symptoms.
My doc thinks it is best to start slowly with this one. Now I have worked up to 50 mg/day and I think it is very effectivee.
Posts: 2557 | From home | Registered: Aug 2006
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Hi Amy!
It is common to have dizziness the first couple of weeks on mino. And yes, you will probably herx. I have been treated twice with mino, and I think this will be the drug that gets rid of the lyme.
I was on it for 7 months the first time around. It took about 3 months for the mino to really start to make a difference, but after 3 months I began to walk out of my brain fog. And my horrible headaches went away. What a fabulous feeling! I was "nearly" symptom free when I went off of it . . . I think in hindsight I should have stayed on it a bit longer.
I relapsed and have now been on mino for one month. My symptoms are beginning to improve again. I think it is a wonderful drug for treating lyme . . . but powerful.
I hope helps you, Amy.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Some do better with minocin than minocy.
I can't take it myself due to lots of vertigo and inner ear flair from it. But, that system, for me, is pretty gummy anyway.
Some do great; some don't. Some may be herx; some may be that your individual reaction needs to be discussed with your doctor.
Some, if predisposed to inner ear problems, may have more trouble as it can be ototoxic. But that is also why the lyme diet and other supplements are important to shore up your system and get out the toxins.
-
Fibromyalgia is a collection of symptoms. I assume you have a dx of lyme to be on treatment for it.
Once someone gets the dx of lyme, any previous dx of fibromyalgia goes out the window.
If he meant you don't have pain right now, you seem to still. He may have meant, you don't have FM because it's really the lyme. Lyme treatment, hopefully, will help the FM pain/symptoms subside.
Many people with FM dx - as well as CFS - who get successful treatment if dx with lyme or TBD, often no longer have the FM, CFS symptom because those are usually umbrella terms for "undiagnosed" - however, it depends upon the severity and length of time with LD/TBI. Some damage may take a while to subside while some may be permanent.
True, in CFS, infections other than LD/TBD may be the cause, (HHV-6, Cpn, mycoplasma, etc. ) but the point is that these syndromes often have one or more underlying infections. In CFS, some of the other dysfunctions of autonomic nervous system, etc. may be connected with infections, or not.
In general, the CFIDS researchers have always tried to find the underlying causes and they are strong in saying to rule out lyme, etc. before the dx of CFS. Many doctors, however, have not done this or the testing done is often inadequate.
All that said, I think much about understanding HOW our bodies are affected by chronic stuff or n how to treat some LD/TBD symptoms in common - can be gained by following the CFIDS Chronicle researchers.
CFIDS folks have excellent information on many aspects of treatment and some of that can go hand in hand with LD/TBD treatment. (Such as the info on excecise tolerance or how magnesuim lowers the NMDA excitatory processes, chemical exposure, etc.)
Finding the underlying causes, well, I've not seen that sort of effort from FM groups as much, which is very unfair to FM patients, but puts lots of money in some FM research funds to perpecuate a condition by ignoring infection as a probable cause for many.
(Gluten problems may also be part of the puzzle for FM. And some folks may develop FM after an accident, but still, underlying infection should be ruled out if relief is too long in coming. As for sleep disorders, infection can be a cause of that is is very common with TBI.)
Once infections (& liver detox functions) are identified, you then can focus on the more specific dx and more specific treatment. Advice on how to tend to FM symptoms that you've learned along the way, if it helps, then that can continue to work with you now, as long as your doctor is aware of what else you are doing.
-
[ 18. November 2007, 02:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I herxed really hard on Minocin, but it did help me alot.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
I've been on it for almost a month and have been having increased neck, shoulder and head pain. All through treatment so far, I haven't had to take pain relievers, but since I started Mino, I sometimes do.
I've seen a lot of improvement lately, but my whole protocol was changed, so I can't fully credit the Mino.
I'm taking 100 mg. twice daily.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
thanks tutu for the advice and letting me know i'm not going crazy...haha
just a update , this is day 3 on 200mg of minocin, and today is really weird, had a hard night , then today , don't even feel like myself, out of body if you will. Run a red light, and pulled out in front of someone that i seen coming , it really scared the geebees out of me
i'm a very cautious driver, deer country and all...very hyper and jitery, and shakey ...got paper cut and cried...haha then all of a sudden was laughing my bootie off, think i'm losing it today...
called tutu to make sure this was normal with minocin, so maybe i'm not crazy..heard things lastnite that didn't happen, was strange
well i'll take it as its working then , just don't want to kill anyone on the road while killing these dang bugs....
thanks for all the replies...need all the info i can get to keep me sane haha
Amy G
Posts: 33 | From kentucky | Registered: Mar 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Amy,
Many of us have found, as our doctors have told us, that it is often best to start slowly on mino.
Speak with your doctor if the side effects of starting at 200mg/day are bad; many folks start with a far lower dose and find it easier going.
Posts: 2557 | From home | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
=
Adding B6 ?
do any of you who do well with minocycline use B6 with it?
a separate thread about a trial of mino with autistic kids led me to this. A note there, also reminded me that B6 doses must be carefully balanced with all the B vitamins.
according to some research (back in '88) , B6 may help with the vertigo symptoms that can accompany the use of minocy..
Just wondering if anyone has noticed with or with B-complex, a difference in vertigo - if that is one symptom you've experienced with minoc.?
.
[ 18. November 2007, 06:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thanks ya'll for replies.....just feel like would i'm guessing a bad acid trip would feel like ( never done drugs ) let me get that clear haha
just be glad when my day is over and pray for a less insane Amy tomorrow... i need more rest and yea i'm taking b6 also and 15 other vitamins, but doc is aware of them all ...hope its killing them lil &^&*#@#$% THANKS AGAIN
Amy G
Posts: 33 | From kentucky | Registered: Mar 2007
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posted
I've been on Minocycline, not Minocin, for a little over 3 months. First at 100 mg twice a day, then about 3 weeks ago I increased to 200 mg twice a day. I started taking it for a bacterial bronchial infection that I've had for years, which we figured had gone systemic and was causing many of my symptoms and pain. We did a sputum culture and found a bacteria (stenotrophomonas maltophilia) that was sensitive to Minocycline, so we figured the Min. might get some of the Lyme bugs as well.
I've done OK on it. A little herxing at first, and some dizziness/queasiness, but taking chlorella, cholestyramine, and flax seed meal for fiber has helped a lot. I've also had a lot of additional fibro-type pain as well, which is my main symptom. Various types of body work, sauna, and the herx remedies have helped with that as well.
We check my C-reactive protein periodically to gauge how the inflammation is doing. CRP and fibrinogen have been elevated for years. Before Minocycline, my CRP was 13.5. After two months on it, it was 7.5, so I thought that was really great. After another month on the Minocycline., though, including 3 weeks on the higher dose, my CRP is back up to 10.5. Not sure if this means the Minocycline is no longer working for me, or if my stopping the supplements to reduce fibrinogen and CRP was what made the difference. I took the supplements for several years without them having much effect at all on the CRP and fibrinogen, so I figured I would treat the infection directly and see what happened. The enzymes (Natto, Bulouke, Wobenzyme) and herbs (curcumin, bromelain) are rather expensive and don't seem to make any difference in the way I feel either, so I figured I would save some $$ there by not taking them until the infections were knocked back.
Anyway, I'm trying to decide what to do next. I just had an Igenex WB drawn last week for IgM, and I think I want another sputum culture done soon so see if there is anything else. I still have the productive cough, although it is very mild. It's just that every time I cough (several times a day) I bring up stuff that's not supposed to be there.
My chlamydia pneumoniae IgG blood titer was high at 1:512 suggesting infection. My mycoplasma pneumoniae IgG and IgM were negative, but I know those are hard to pick up on a blood test.
Is there anyone out there who has taken Minocycline and not made progress, and then switched to Minocin with better results? Just wondering if there is really a difference between the two drugs.
Sorry this is so long. Thanks for reading and for any thoughts you'd care to share.
Nutmeg
Posts: 386 | From WA state | Registered: May 2005
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