posted
I have been on mino since February and in particular 200 mg mino and 250 zith (MWF) since July. In June I developed new symptoms (numbing in hands, arms and feet; more memory issues; fatigue; balance; ). My doctor says it is a herx. These symptoms are not going away. 25 days ago I stopped all abx without my physician's knowledge because I wanted to find out if these new symptoms were due to the drug, herx or disease before my next visit. My stomach had also become really bloated and I suspected yeast.
I found that those new symptoms didn't get better or worse with the removal of the abx. My TMJ symptoms, which were part of my initial symptoms, did increase but not as bad as before treatment.
I went to my appt last week and told him about stopping the abx. He said it probably wasn't a herx and it was the disease. At the end of the appt though he was putting me back on mino only at 50 mg and I am supposed to work back up to 200mg with an ultimate goal of 400mg. He was back to thinking I am constantly herxing, not the disease.
I brought up the fact that none of this went away when off the mino and I pretty much felt the same whether on or off the drug but he wouldn't change course. I asked him for difulcan and he wouldn't give it to me because he was afraid I was going to herx from it. I got nystatin instead.
It seems to me if it were a herx it should have gotten better off the abx and if it were disease it should have gotten worse. Staying the same makes me wonder if it was a side effect of the mino that has still not cleared up. Is it possible that the neurological symptoms I have developed are a side effect from the mino and now they are permanent or take a long time to resolve?
I have an appt with a new LLMD in Janurary. My question is what to do until then, stay off the mino and concentrate on getting yeast free using nystatin and diet or take my current doctor's advice and restart it?
Posts: 836 | From Somewhere | Registered: Nov 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I was on Mino from april through mid-October and had a similar experience. I felt ok, not great. And I had a progression of some of my symptoms, which I usually don't have.
I just switched back to 400mg / day of Doxy and had a big here for a few days.
This makes me think the Mino wasn't doing anything at all, and that my illness was progressing a bit while I was on it.
Dr. Burrascano has recently indicated that he never witnessed Minocycline being beneficial for his patients, even though other LLMD's had. He theorizes it is due to a particular strain in the region.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
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Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
That is interesting. Your post makes me lean toward stopping the abx and working on the yeast issue before I see the new doctor.
I did have some progress on the mino - mainly it really helped my TMJ but that seems to be as far as I got.
Posts: 836 | From Somewhere | Registered: Nov 2010
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Did you try an extra day for Zith. A few years ago I did M,W,F 250 zith... From a nice doctor that didn't want me to die, didn't know what I had, but knew I was sick. Added Rifampin and for a while had a huge ,positive effect.
After a few weeks he actually wanted me on two orals and 14 days IV... I really think this would have helped a lot back then .. But the ID,infectious disease , docs said no and put me on 300 rifampin x's two. Didn't help near the same..
All to say you might need a bit more of a hit to help...
Whether it's abx or herbs or both,it's so much easier to attack this now/early . The longer it drags ,the worse it gets...And no steroids of any kind. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm too tired to do this right but all I can say for now is that both Zith and Mino can be ototoxic (causing ear and balance issues). When the inner and middle ear system is affected, so is concentration, and so much more.
LIVER SUPPORT MUST accompany mino or zith -- in order to offer some degree of support (maybe protection) to the whole ear / balance system.
Liver support helps the toxins better process and then less hit the ears. Liver support is very important for so many reasons.
Milk Thistle is the most common liver support but there are many others, too. I hope your doctor has you on liver support as it can help decrease a herx, too.
I tried, several times, to tolerate mino. I just could not. Same with zith. My ears just could not take either one, even with support supplements.
There are many choices out there. If one really feels wrong for YOU, you should have choices - and also some specific support methods to help you better tolerate whatever Rx makes the most sense (as no treatment is a walk in the park). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said the TMJ was worse.
TMJ is very often, a sign of magnesium deficiency (very common with lyme).
What is your dose and what type of MAGNESIUM are you taking? You might need more or a different kind. Mag. Glycinate is one good type.
posted
The TMJ is worse but not nearly as bad as it was when I started this. So I think the mino really helped there, and it helps keep me pain free. That is the bad part about stopping the abx. I take 1200 mg of magnesium malate. I will check out the vitacost link. Loose stool is something I can definitely use more of.
I really tried to get him to change my abx but he wouldnt. He was going to up my zith dose but never did. I have tried rifampin but it made me herx terribly. I told him I was willing to go through it but I would need to take time off from work. He still wanted me off of it. Mino seems to be his drug of choice for me.
Thanks for the links I will look them up.
Thanks for the help
Posts: 836 | From Somewhere | Registered: Nov 2010
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Nonna
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