posted
Already been on suprax/biaxin combo 13 weeks last fall. Still had some back pain but otherwise thought I was better but leg symptoms started in April in a big way - legs feel like jelly or achy or like wet sand. Also tingling, nausea, fatigue. Was doing a ton of yoga plus tennis and tap dancing as recently as March so went downhill quickly. Have been on minocycline 100mg/day for 2 weeks, 150mg/day for 1 week, and now at full dose of 200mg/day for the last week. Three weeks to go before I go back to doc but legs (and the rest of me) feel awful. Should minocycline be kicking in more by now? Should I try to be patient and wait 3 more weeks?
Posts: 133 | From Far Hills, NJ 07931 | Registered: May 2003
| IP: Logged |
posted
Minocycline is an amazing abx. One of the best IMO. It completely eliminated my arthritis and leg/hip weakness in 4 months pulsed (200mg MWF).
Stick with it. I had terrible herx and more leg weakness (could barely walk and the LLMD wanted me on IV, but I stuck it out).
THis is the one abx I believe can cure Lyme (along with Zith, clindy) if you take it long enough (years) and pulse in other abx for co-infections.
Read the RA sites.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I, too, just recently started mino, and felt quite horrible for about a week. I believe it was a herx reaction. I have gotten better (meaning less horrible feeling) since that horrible spell. Hopefully, you will too.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
Thanks for the positive responses - it all helps keep me going. Feel a little better today so maybe minocycline is finally starting to kick in.
Posts: 133 | From Far Hills, NJ 07931 | Registered: May 2003
| IP: Logged |
posted
When I started on Mino (over two years ago) it was a B*tch for the the first 4 - 6 months. I was in alot of pain, and I only started on 50mg a week. (Thats all I could toterate.) Now I am on 200mg a week and doing great on it.
I take it all at the beginning of the week and get all the herxing done at once, and feel alot better for my weekends!
cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
I've been on mino for almost 2 yrs now and it appears to be my magic bullet. I've been in tx for 6 years, dealing with babs and bart and all the meds needed to try to get rid of them...
But I digress......Mino has been a very good med for me and I'm finally rounding the bend and doing well. I'm at a 300mg a day dose and pulsing (have been on the pulsing regime for about 6 months). My llmd is really encouraged, and so am I. I have near normal days from time to time which is great and I am even going to do some part-time work this summer!
Be patient with the mino because if it is a good fit for your particular situation, you could really see some very positive results! cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I started Mino 2X100mg daily last Saturday and seems immediately herxing on it.
Today I feel improved.
So seems it's working.
I plan to pulse it like Myco (MWF).
However, I am also on Rifampin (600mg daily) and rifing.
I also plan to pulse Rifampin.
I have hand pains,sole pains and hip pains as well as headache and stomachache.
I thought these symptoms were from Bart.
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I started mino about 2 months ago-- Herxed for 6 weeks and now I feel perty good-
I had been on doxi for about 3 yrs but good effects were tapering off alot--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
posted
Minocin worked very well for me. According to Dr C's studies it has only a 46% response rate. I stayed on it for 6 months 100 mg 2X per day. After 2-3 weeks my TMJ was gone. After 8 my GERD was gone and I could stop the purple pill. After 12 I ditched my asthma inhalers.
After a solid 6 months, I stopped for 2 weeks but my symptoms returned. I restarted it 2 weeks later for 6 weeks. The same thing happened when I quit again. This is what finally prompted me to get to a LLMD.
I hope you have a good outcome!
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
| IP: Logged |
posted
I too am having success with Mino. In treatment since Nov but I'm seeing numbness I've had for at least 10 yrs resolve with this abx.
Great BBB penetration with Mino.
Posts: 158 | From PA | Registered: Oct 2006
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hi Dave. I have just started mino. Hoping for a miracle.
Just tried to PM you, but your mail box is full. Here's the PM I tried to send.
"Greetings:
Glad to hear you are doing better.
As for me, I'm going downhill fast since I am not able to take many of the antibiotics anymore, after four years of very hard treatment and several llmds.
Please advise which of the rife machines you think is the best to use, and where to purchase one.
I have the book on rife, but have too sick to get through it. Maybe when school is out and I stop running all over the place with the kids, I will find more times to read.
But my body needs help asap.
Thanks for any advice you can offer.
Mary"
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I am on mino -- 200 mg/day for 6 months now. I did not see any real improvement until I had been on it for about 6 weeks.
After about 4 months, I saw great improvement and I feel that I am about 90% improved. Still have occasional slight numbness and joint pain, but I have not had a stiff neck or headache in OVER A MONTH! Brain fog and fatigue is much better also.
The current plan is to come off of the mino at the end of June and pray that my symptoms don't return.
So, mino has worked beautifully for me.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I found Minocycline gave me ear ringing. It was a wonderfull antibiotic for me when I took it. I had a horrid herx on it on the 4-5 day after taking it. I was on 50mgs twice a day, and woke at 5AM with uterus pain,
and severe bone and muscle pain, I did not think I was going to make it that day, I could not walk without near collapsing.
The ear ringing has not gone away for me, I also did the quinine, but I had ear ringing before this from Minocycline.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
posted
After a couple of days of improvement last week I am now feeling worse than ever. Should I expect this from minocycline? Have now been on about 6 weeks. These last 3 days I have hardly been able to walk, nausea, fatigue, etc etc. When do you judge that it's not working and when do you just tough it out? At this point I don't know if the minocycline is making me worse. It's definitely not making me better. What to do?
Posts: 133 | From Far Hills, NJ 07931 | Registered: May 2003
| IP: Logged |
posted
There is no perfect answer . I can tell you what I would do .
It sounds like the mino is doing its job , but there is a point of saturation we all meet with herxing . When it gets almost unbearable and goes on a long time , I back off the dose . I would personally lower the dose and pulse it every other day . I would aso take it ( at a lower dose ) WITH AMBROTOSE ( glyconutrients ) that potentiate the immune system .
I know a doc in WA state using glyconutrients with minocycline who pulses the ABX and has good results . She does not believe in making martyrs in the healing process .
Some will disagree with me, but this approach is having some good results. There is simply no perfect or right way to attack this disease .
I strongly disagree with provoking herxes that incapacitate a person for lengthy periods of time. In the end , I suspect the massive death of endotoxins causes a burden on the immune system . The body has to have a way to excrete the toxins while having the energy to kill enemies .
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!
Printer-friendly view of this topic