posted
I just went up to 150 mgs last week and I don't know if I'm going to be able to stay at this dose(my goal is to get to 200 but who knows how I'm going to do that).
I started out last Oct on 50 mgs every other day and then increased it to 100 in Jan. I had some headaches and some anxiety but nothing like this.
30 minutes after I take my dose I feel really out of it, my blood feels like it's boiling (but I'm cold) and then I have a panic attack that lasts 2-3 hours. I take 1 mg of Ativan but even that doesn't do the trick. This has happened 4 times and now I'm scared to take it again.
I keep reading that this is an excellent drug for my symptoms (severe brain fog, short-term memory loss, etc) but how do you stay on something that makes you want to pick up the phone and dial 911?
Has anyone gone through anything like this? Any suggestions would be great.
Thanks,
Brooke
Posts: 117 | From PA | Registered: Aug 2008
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sutherngrl
Frequent Contributor (1K+ posts)
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I am sorry you are dealing with all that anxiety!
I am on 100mg of Minocycline and my main complaint is dizziness. I already experience major anxiety so that may be why I don't notice that as a side affect. I take Xanax 5x a day.
The dizziness is not too bad and I am trying to hang in there just because of what you said, that it is suppose to be an excellent drug for LD.
I would maybe scale back to 100 mgs if you can tolerate that. That is all my dose is anyway, since I am very small. Of course I am going to be on it for a very long time.
Have you tried taking xanax or valium? Or upping the dose of ativan?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Brooke,
My first thought is whether your liver support is adequate. And, also your adrenal support?
Can you increase your magnesium intake as that can help the anxiety and also help the liver better clear toxins from the infections, too.
Please call your LLMD and ask what s/he thinkgs. You might ask about adjusting the dose - or if you could try timed-released pelleted Minocin instead.
It's my personal thought that if you have this kind of reaction that you may need a lower dose (if you are sure that both liver and adrenal support is the best it can be).
As horrible as anxiety can be, there are few regular doctors who would be able to help you with this. Even fewer ER doctors. So, I do hope you can talk with your LLMD about a plan.
Antivertiginous action of vitamin B 6 on experimental minocycline-induced vertigo in man
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The Road Back Foundation at www.roadback.org may be a place to see what helps others. I talked to someone there a while back and they said that the pelleted, time-released MINOCIN was easier for some.
===
more hints on what can help with vertigo from lyme &/or from meds:
I can completely relate, and I don't know the answer. Please PM is you need to vent, talk, etc.
I don't take mino, but my treatment with zith and mycobutiin made me seriously want them to lock me up I was so anxious and had such dark feelings. I thought that I would lose my mind. My symptoms are most psyche, cogntitive, memory. I have been taken off those drugs due to low wbc count and the anxiety has gone down.
I think it was all herxing. Or so I am lead to believe. I think that I am going to have to endure this to get back to health.
I see my LLMD on Tuesday and I will see what he has to say.
Sorry to hear about your troubles.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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sutherngrl
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Member # 16270
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Thanks Keebler! Is B6 the same if it is taken in the B-complex? I just started taking them again. I had stopped my supplements for a while; while dealing with other issues and having to swallow too many pills. What is NAC?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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B-6 is the same if taken in a B-complex. However, you do not want to take your B-complex in the evening. It is far too stimulating. I have to take my B-complex with breakfast or lunch.
B-6 (or it's precusor, P5P - pyridoxal 5 phosphate ) can be purchased separately to help for evening calming.
NAC is N-acetyl-Cysteine and is a glutathione precursor that helps the liver better able to metabolize toxins. It can also protect the liver against some of the medicines that are hard on the liver.
You said you had to stop your supplements for a while. I understand why but you must have the supplements for your body to tolerate the treatment. It is a very rare person who can get over lyme with just abx - without support from supplements since lyme has destroyed so much of the body.
You must have the liver protection so that your liver can clear out the toxins. The toxins are what creates so much pain and dysfunction and lyme really hits the liver hard. It needs help.
Excess toxins can create awful anxiety. Please try to add back in the supplements suggested by your LLMD. If you can't swallow all the capsules, ask about a combined powder mix.
This is one that I use: BioGenesis BioCleanse. It has liver support and also full range of vitamins.
Your probiotics are vital, too, to help prevent candida. Absolutely essential. But you can open those up and put in a little water to drink. It's best that at least one capsule be taken whole, though.
The B-vitamins can make your nerves stronger - and help combat anxiety (if not taken too late in the day).
Fish oil, too, is marvelous to combat anxiety. It's so good for our nerve cells - and brain function. But, the most important helper of all is magnesium, balanced with calcium. Magnesium can be a miracle helper for anxiety and so many other symptoms.
More about all of this in the links I posted above. This can and will get better. Good luck.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Oh, just wanted to be certain that you consume absolutely no artificial sweeteners, additives, food dyes, etc. And no MSG. You will need to google for all the names MSG can hide under.
Aspartame/Nutrasweet/Equal is toxic to the cells of the nerve/brain and can create horrible anxiety and nervous system symptoms. MSG, too. Even a trace can have a bad effect. Check all your foods, meds, mints, gums, even toothpaste.
Since sugar is off the list for lyme patients, If you want a sweetener, Stevia, from a plant is a good choice. You need only a tiny amount. Stevia does not promote candida/yeast growth.
My doctor has never mentioned any kind of liver support. Does it help you to tolerate the medicine better? This is all new to me.
And Sutherngrl,
The reason I want to go up to 200 mgs is because I've read that that is the effective dose. I don't feel any better on 100 mgs.
I used to take .5 mgs of Ativan a few times a week but lately I've been taking 1 mg a day! I'm anxious all the time (not a pleasant feeling).
Thank you both for your help.
brooke
Posts: 117 | From PA | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Brooke,
Liver support is detailed in Singleton's book and in Burrascano's work too. Both are linked above.
Not all LLMDs are educated about supplements but most are. Some may still think they are fluff or dangerous (and some are but that is why you do your homework and buy standardized and good brands).
Burranscano makes it clear that some supplements are essential. And, that means, essential to success. Without liver support, my liver would not stand a chance. Without adrenal support I'd not be able to even move.
Again, the authors I mentioned are the best places to begin.
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