lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
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.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
posted
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.
Posts: 15 | From New Mexico | Registered: Jun 2012
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
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 ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Gary,
You need to go to bed! Minicyclone If you're sleeping 12 hours a day and posting at 3a.m. that means your day will not begin until 3p.m.
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.
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
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.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
| IP: Logged |
posted
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.
Posts: 532 | From Texas | Registered: Oct 2004
| IP: Logged |
posted
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.
Posts: 447 | From Vermont | Registered: Jan 2011
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
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!!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
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.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
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.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
posted
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.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
If you're sleeping 12 hours a day and posting at 3a.m. that means your day will not begin until 3p.m. ![[dizzy]](graemlins/dizzy.gif)
Printer-friendly view of this topic