Topic: Minocycline in fairness...research I found this morning
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
You all know how I feel about abx. as a CURE for lyme, but in fairness, I feel I should post this:
"Tetracyclines such as doxycycline and minocycline may block a number of cytokines including Interleukin-1 [105] [49] [106] [50], IFNg [107] [51], NO-synthetases, and metalloproteinases [108] [52].
Interleukin -1 and IFN-.gamma act synergistically with TNF-alpha and are known to be toxic to nerve tissue [109] [53] [110] [54] [111] [55] [112] [56] [113] [57].
One study showed that oral administration of doxycycline prevented the breakdown of cartilage in subjects with osteoarthritis [114] [58].
In another study, a patient with rheumatoid arthritis who did not respond to other arthritis medications had marked improvement with Minocycline [115] [59].
In another study, minocycline-treated patients were more likely to have gone in remission and discontinued treatment with prednisone at 2 years than patients who were treated with other standard rheumatoid arthritis medications [116] [60].
Tetracyclines may also block the inflammatory cytokine Tumor Necrosis Factor Alpha (TNF-alpha).
Tumor Necrosis Factor Alpha is released by herniated disk tissue (nucleus pulposus), and is primarily responsible for the nerve injury and behavioral manifestations of experimental sciatica associated with herniated lumbar discs [117] [61].
In one study, treatment with doxycycline significantly blocked the nucleus-pulposus-induced reduction of conduction velocity [118] [62]"
posted
DAMM-everytime I try Minocycline I feel like I'm going to die-three strikes and I'm out-Dr. put no more mino in my chart.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam on it right now its slightly different than doxy tetra ,feeling same except the stomach problems seen lower down and not as near as bad as tetra 1, doxy 2,mino 3 as far as pressure upset gut although it still occured it just dosent seem as much pain or pressure as the first 2.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I'm about to start Mino. I have capsules and am thinking of emptying some out for the first few tries to see how I go.
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I am currently trying to start minocycline (after an 11 month bout with C. diff).
I'm trying 50 mg per day on M, W, F. If tolerated (meaning no C. diff) then I will try to increase it to 150-200 mg on those days.
Then, maybe try to go for every day of the week. I sure as heck don't want C. diff back!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm on Minocycline as well. I'm only doing 100 mg a day. I need to think it's doing SOMETHING since I'm feeling horrid.
Good to hear that this is suppose to be beneficial since I could definitely understand why people would give up on this one. I'm sticking with it though since it's definitely shaking things up.
Good luck to all those on this abx. And thanks for the info Marnie.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I do not see why any lyme doc would start a patient out on more than 50mg to begin with. The die off with mino is much more intense than with drugs like doxycycline.
If the patient starts high he can have such a severe herx that can literally cause head / brain swelling . I think most people could tolerate it ( and get good results ) if they simply started low, and even if they pulsed it . A lot of bacterial protocols approach it this way .
It seems an unnecessary and foolish risk to start patients out on high doses given the fact that the drug has deep tissue penetration.
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
I have to agree about starting out slowly. My MD started me on 100 mg 2xday. I was litterally sliding down walls. I was so dizzy and the head pressure was too intense.
We experimented with lower doses and pulsing. What has work best for me was to take 25 mgs. every other day for a month. I have added in 25 mgs. one month at a time. I am up to 100 mgs. M,W,F. I will increase, only if I feel I can tolerate it.
It has helped me tremendously. Aside from some yeast and minor stomach pain, it is tolerable.
And yes, you can open the caps and dump some out. The pharmacist said it was ok. That's what I do. I actually swallow what I dump and save the rest for another dose/day.
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Michelle M
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Member # 7200
posted
First drug in two years to stop my chronic diarrhea.
Rough at first but well worth it.
WAY less stomach protest than doxy.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Beachcomber , thank you for sharing your experience . I have read similar scenarios too many times .
I know a lyme doc who uses mino and she starts patients low and pulses the mino every other day , then adjusts the dose to tolerance .
She also advises her patients to take low doses of glyconutrients with the mino ( not much because they increases cell communication and really are potent ) . They are having good results .
beachcomber
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Member # 5320
posted
Annxyz:
I think the pulsing works well, at least for me.
I am not 100% sure what the glyconutrients are. But, my MD has me supplementing with liquid minerals and some enzymes - not much though, as you say. A nutritient rich diet is also very important. I think my MD would pass out if saw me drink a Coke Classic (I don't).
posted
Jarjar's doc is having good results adding glyconutrients ( simple plant sugars that boost the white cells and help all cells communicate ) in SMALL doses with the mino . He feels the glyconutrients make a huge difference . Hopefully he will post again or you can PM him .
I have read several studies and know other docs who advocate the use of glyconutrients . For those intereseted in the science , you can find articles at the immunesupport.com library . If you type in " glyconutrients" the studies will come up about the impact of the glyconutrients on white cell function.
However , I have tried them , and they will increase herx symptoms, so I never take more tan 1/4 tsp , which makes a container last a very long time.
The product a lot of people use is Ambrotose ( by mannatech ) , but I think you can by the ingredient more cheaply elsewhere ( larix or western larch powder I believe ) .
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Have any of you had Pseudotumor cerebri as a result of taking Mino.....this bit scares me a lot, especially since I'm a bit overweight, which says is a high risk for the Pseudotumor cerebri.
I was just reading about it and it appears if you do get this side effect, it can take 2 years to get over and may involve lumbar puncture, stents and alot of unpleasantness to put it mildly.
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
FYI
Minocycline can cause drug induced lupus. This is a rare side effect but I believe it happened to me.
I was on 100mg MWF for Rheum. Arthritis (many people do have a very positive result from this treatment) After 4 or 5 months and doing really well, I tried ramping up the dose to the 200mg MWF recommended by Dr Brown who discovered this treatment for RA. I only increased to 150mg but by the end of the week, I had a rash in my scalp, on my face and my hair was thinnning. A quick search of these symptoms brought up Lupus.
I cut the dose back to 100mg and the outward symptoms went away. That was last Sept. Recently I tried to ramp it up again and after just 1 day of 150mg, the face rash returned. Now I was worried about taking it at all. After all, if 150mg causes outward signs, surely 100mg is having some bad effect internally.
My rhuemie who prescribes the mino for me is no help as he doesn't believe in this protocol anyway. I'm afraid he would label me Lupus, stop the mino and try to start the methotrexate he wants me on. Since I believe I have an infection (Lyme and/or co-infections)I do not want to suppress my immune system.
I have finally found a doctor (GP) who treats RA antibiotically and hase a great deal of experience doing so. But I can't see him until 5/4/07. So, on 3/27/07 I stopped minocycline altogether. A scary step and too soon to be sure about this, but my joint pain does seem to be decreasing daily. I am thinking, since joint pain is a Lupus symptom and mino can cause drug induced Lupus, the mino might actually have been aggrevating my joints and hindering my progress.
The good news is, if I have drug-induced Lupus, stopping the drug stops the Lupus or so I have read.
I am hoping the AP doctor will put me on Zithromax. Many RA people who can't tolerate Mino seem to do well on Zith.
Just wanted to warn everyone about this rare but possible negative side effect of Mino.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Luvs,
I hope that stopping it will reverse this condition...that was going to be my next question to you, does it stop when stopping the drug.
Do you know anyone who's had the fluid on the brain from the Mino (can't even think of the name now, in such a fog).
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Cobweb
Unregistered
posted
I printed out the thread on mino and doxy causing pseudosomething-wish I could remember where I put it-anyway whenever I take either of these meds I feel like I'm going to die because the pressure in my head increases so much.
Mino more so than Doxy-but enough to scare the beejeeesus out of me. I have an appointment with LLMD this afternoon and plan to take it to her.It's here somewhere in one of these piles. Carol
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Minocycline Whewww!!
I had friday off right on schedual this month I herxed and then cold symptoms this has happened every fourth week for the last 5 months and I mean severe headcold symptoms.
It starts by me aching and tired sore all over the next day headcold fever aches lasts 3 to for days every time I have a friday off (i work a non standard schedual for this) I have been sick
Now I started mino last month and the herx / and headcold symptoms this time were horendous I ached had high fevers thursday eve friday, then saturday intermitent high fevers sunday one fever but alot blowing nose then monday I feel pretty good but still some cold leftover stuff.
Now I dont know if I herxed and caught a cold this time because wife has exactly the same thing hers started friday morning except her fevers not as high as mine but she has the cold stuff like me she also started new med last month tindamax.
herx's ? time will tell! let you know next month. Minocycline seems to be working.
ps this time I had some joint pain with herx.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I just recently started 200mg of Doxy a day. Around the 5th day of treatment, I started having a sore throat and swollen glands. By the 10th day, I thought I was dying. I was feverish, aches and pains all over, and really tired.
Along with this, came crazy headcold/sinus symptoms. Facial pain, earaches, congestion, headaches, stuffy nose, post-nasal drip. I was miserable.
It lasted about 5 days or so, and this morning I'm feeling pretty good. I don't want to get too excited though, in another hour or so I could be feeling terrible again. So, I'll enjoy it while I can. Good luck.
Posts: 81 | From Central PA | Registered: Mar 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
While reducing some inflammation is desirable (gotta get that related pain down), we must be careful.
We must keep in mind that inflammation IS (and always has been) a step in the healing process.
Humira (to block TNF alpha) and Fosamax (to prevent bone destruction)...together....
did NOT work for someone I personally know.
Destructive crippling arthritis and osteoporosis continued . Lymphadema also occurred.
Which is NOT what is supposed to happen!
But it did.
There is more than just calcium involved. MANY nutrients go into bone and joint "health".
It is LOGICAL our body would use calcium (our enormous reserve) to keep the blood pH at the right level when other mineral levels drop .
Bones need: Ca, Mg, Phosphorus (P), vitamin D and boron...for starters. IN BALANCE.
"Recent studies have demonstrated that proinflammatory cytokines induce large amounts of nitric oxide (NO) and that the amount increases.." (Pubmed)
TNF alpha -> NO.
Think about WHY this is important.
The body is NOT making "mistakes".
Now...about that inflammation.
Back to good old ASA. Ideally, Bufferin (which has Mg in it)...
P.S. Blocking TNF alpha = more prone to sinus infections.
Darned if you do...darned if you don't!
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by PBizzle: I just recently started 200mg of Doxy a day. Around the 5th day of treatment, I started having a sore throat and swollen glands. By the 10th day, I thought I was dying. I was feverish, aches and pains all over, and really tired.
Along with this, came crazy headcold/sinus symptoms. Facial pain, earaches, congestion, headaches, stuffy nose, post-nasal drip. I was miserable.
It lasted about 5 days or so, and this morning I'm feeling pretty good. I don't want to get too excited though, in another hour or so I could be feeling terrible again. So, I'll enjoy it while I can. Good luck.
Seems like me and you must have been fishing at the same pond
ps marnie iam taking asprin and also theres asprin in my percocet ASP no acetametaphen, also took a melatonin saturday nioght woke up redeyed hungover feeling but alas not from beer.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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