This is topic Minicyclone Experiences please in forum Medical Questions at LymeNet Flash.


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Posted by lymetwister (Member # 19590) on :
 
I've been on 100mg 2x day for about 2 weeks now. 300 mg/day is just too hard.

I've noticed that I'm aching all over much much more then usual.

I'm sleeping real hard and almost 12 hrs a night with a ton of daytime fatigue.

A bit more emotional then my bad baseline.

My head symptoms also seem to be exaggerated. That would include head pain in general, balance issues (that rocking on a boat sensation), pain in the back of the head (occipital neuralgia).

Just overall feeling like crud.

Today, I'm having pain on my left ribs when I cough. This is new for me.

What I hate about this illness is that I never known if im killing anything or just making my immune system go nuts. Only the end if there is one will tell the tale.
 
Posted by evmal (Member # 38096) on :
 
I could use 50 mg * 2x day, or I had extremal dizziness.
My doctor recommended me to use as much as I could tolerate
without much bad reaction.
 
Posted by lymetwister (Member # 19590) on :
 
MANYBITES,

I have never seen the doses of 400-600mg your posting.

Can you give me some links that suggest this dose.

Everything I have seen is the doses of 100-200mg/day or less.

Many can't tolerate even those dosages.

Your last statement:

quote:
You are not that severe like I was
I really don't think that is a fair statement. I would never compare my suffering to another person on here. How can you say something like this ?

[ 07-15-2012, 09:43 AM: Message edited by: lymetwister ]
 
Posted by feelfit (Member # 12770) on :
 
Gary,

You need to go to bed! Minicyclone [Wink] If you're sleeping 12 hours a day and posting at 3a.m. that means your day will not begin until 3p.m. [dizzy]

Many ppl have awful problems with toleration with mino. I have not seen dosages as high as 600 mg/day either, they would be digging my hole or preparing my urn at that dose.
 
Posted by kidsgotlyme (Member # 23691) on :
 
My DD has been on mino at the same dosage you are doing for about 2-3 months. It has been HARD!! She has been much sicker during this time, but we are starting to see some improvement(I think.)

She has had a lot more herxes than she ever did on Doxy, Biaxin, or Ceftin. She also does IV Claforon.
 
Posted by dal123 (Member # 6313) on :
 
300 mg is a high dose, typical dose is 200 mg. Mino is very good at penetrating the CNS, has helped my eyesight and hearing by leaps and bounds. Also good to take with Cefitn.
 
Posted by rera2528 (Member # 29886) on :
 
Lymetwister - your side effects sound very similar to what I experienced. I felt the worst on the combination that included mino, but afterwards, I felt much improvement.

I do think that detox is key. I wish that I had done more. I have been doing Pekana off and on the last few months, and I find that it has been huge!

Take care.
 
Posted by ktkdommer (Member # 29020) on :
 
I am on 200 mgs of mino. I got eyesight relief also. It has been fabulous and happened within 3 months of being on the med.

I would be interested to learn more about the higher doses. My youngest is on the same dose as me but he has such horrible CNS problems. Would love to get him cleared up!!
 
Posted by lymetwister (Member # 19590) on :
 
The question is I'm 3 weeks on the Minocycline pretty much at 100mg 2 x day.

Do I stay on it as I don't feel any better ? The body pains are starting to get to me.

The head stuff is pretty bad. I've already taken off a day here and there. Or the flip side is that it's working and why I feel so bad. In all of my treatment, I've never felt better from doing anything really.

Worse before you get better, does that go on for 3 or more years ? It has to be the Lyme. I'm not having any classic Babesia Symptoms.

I'm thinking I spent so much time chasing Babesia and not going after the Lyme. Now I'm thinking the Lyme spread while doing this and if I had Babesia, it sure doesn't seem to be an issue right now based on the symptom list.

I think the word is Oy Yi Yi where I come from.
 
Posted by kelmo (Member # 8797) on :
 
Lymetwister. It was great for my daughter's brain function. So..that meant screaming headache for a few weeks.

What I did was break apart a 100mg capsule and split the powder between two gelcaps.

She took 50mg ONE day a week to start. Mino hit her HARD.

She eventually worked up to 200mg daily, or every other day.

After a year, she changed to something else, which didn't make a difference for her. I think it was Biaxin and Plaquinil. Meh.

Ivermectin was the next thing. And it hit her like Mino. It has also improved a lot of symptoms.
 
Posted by Jennifer70 (Member # 30280) on :
 
Definitely felt much better with neruo issues on mino. It hurt initially, alot of headaches. It's great for crossing the blood brain barrier I felt alot of weird stuff going on in my head at first which I feel may have been die off reaction.


I've noticed less anxiety and depersonalization....i felt like i was back inside my body and i could feel again. things to watch out for....my nail turned grey which may be permanent. also i have patches of skin that turned a brownish color...but from what i've read they should go back to normal.
 


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