METALLlC BLUE
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Member # 6628
posted
My expectation is 3 months +, magnesium supplementation.
Can I pulse this drug 4-5 days on, 2-3 days off, and expect to still see the same results while minimizing side effects?
Which type of Magnesium is optimal?
May I mix Tetracycline with levaquin?
At this time, only Malarone, and Levaquin would be the drug choices unless Tetracycline was necessary to arrest the Lyme Disease.
I am writing my LLMD to tell him I'll be self treating under the care of my PCP, and that I don't wish to make the long drives at this time to see him. I'm burned out with 9 months of aggressive drug therapy under his care.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I took Levaquin for 5.5 months and took regular Magnesium from the Health Food Store.
I started having tendon inflammation about 4 months in, and tried to swtich to Septra but had a reaction.
My LLMD put me back on Levaquin for another month. I nursed the tendon inflammation with ice, and babied it for another month until I stopped treatment.
The tendon inflammation took care of itself after about a month.
My LLMD says it's the first line of defense for Bart. It's a heavy hitter for sure.
Posts: 79 | From Northeast US | Registered: Sep 2009
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METALLlC BLUE
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Member # 6628
posted
Unfortunately I can't go back to Septra (Bactrim?) if the Levaquin fails, but I'm hopeful I can complete at least a cycle. Why did your LLMD suggest such an extended time period? Also, any idea why he suggested returning to Levaquin even with Tendon inflammation? Where was the tendon inflammation?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Can only comment on magnesium. Magnesium glycinate is the best form. Get a pharmaceutical grade one such as Pure Encapsulations(no fillers) or Metagenics.
Better still if your doc can give you IM magnesium sulfate shots that would be ideal. If you can get IM shots, continue with oral mag as well.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I had a reaction also, to Rifampin and I was heading to the end of tx for Bart, he thought it would be ok.
He told me to just take care of it; no free weights, shoveling (it was winter at the time), no lifting anything heavy. It was my rotator cuff.
Based on my symptoms Bart was one of my biggest demons. I had been treated for Lyme for a year, with no co infection tx from another LLMD and was very sick. This guy went for Bart, in a very big way.
Bart is a tough one to dig out. My rotator cuff is fine now. Back to free weights whenever possible.
Still fighting Lyme though and may have to return to co's on more time, pulsing.
Posts: 79 | From Northeast US | Registered: Sep 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I already ordered the Magnesium before reading this post. It's going to be NSI Magnesium Ultra. I'm loading with Magnesium Malate from Nutramedix 2 caps x 2. When that runs out, then it's onto the Levaquin with Mag Ultra NSI.
The Magnesium Ultra will likely be 2 capsules per day.
posted
I took Levaquin for three months, no plusing, and had zero problems. Didn't take magnesium either, but I was told to add it in if I had any problems.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
I never pulsed Levaquin. I was pulsing Omniceff and Malarone, but because my Bart symptoms were so bad, and not treated for a year, my LLMD, pushed on through with Levaquin.
The first time it was in combo with something else (I don't remember what). And the second time it was solo.
On the first occasion, around '98 (I think, hard to remember), I was still a functional human. My gut was okay and my energy was not awful. Most of my problems were still neuro. I was going to the gym regularly, though using much lighter weights and less exercise intensity and volume. Immediately upon starting, like within two days, my Achilles tendons, ankles, knees, hips, low back began to ache terribly. I had to drop my lifting weights to practically nothing, but suffered no tendon damage (my doc had never heard of that happening at that point). Also, after 3-4 months there was no improvement I could notice.
The second levaquin experience, around '04 or '05, I was on my way to being completely disabled. My gut was shot through with bugs, and the nerves were paralyzed. I was sensitive to most foods. But after my second or third day of levaquin I had a normal bowel movement; unheard of at that time. My constantly bloated, painful, stuck, gut started to move and the pain dropped away. It seemed miraculous.
Unfortunately, at the time I was seeing an ID doc who was running a slew of bizarre and esoteric tests, and said that I should stop the levaquin for the duration of testing. I stopped for two weeks. When I went back it seemed to be much less effective, and by the end of the month it was not working at all. My gut, and everything else, was as bad as before I started if not worse. That's not to say that I would have had lasting benefit if I never took the break -- I may have, I really don't know.
I have not tried it since.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
it was my silver bullet, at one time.
3+ months of using it 1x daily, no mag, and i was 70%.
didnt transition to anything per my former docs advice and relapsed.
im on factiv now and will most likely give levaquin another shot if factiv doesnt prove to be better.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
TF,
Why did your doctor tell you to stop the Mag with the Levaquin? Does Mag make it less effective?
Abxnomore,
Is Mag glycinate really that much better than Mag Malate? (I am also taking the Nutramedix brand which is malate, like Metallic currently is).
Not on Levaquin right now, but will probably take it at some point within the next 6 months, to hopefully finish off Bart.
Metallic,
I don't see why one would want to pulse when treating Bartonella, because Dr. B says that it comes back so quickly when meds are discontinued (within a couple days, but I'm sure even the first day off meds, it's brewin') Pulsing makes more sense for something like Lyme, to me.
Or if you were gonna pulse a Bart med, I'd think you would do like 6-8 weeks on, a couple weeks off, repeat.....so that you would avoid the problem I mentioned above.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Hoosiers51 Magnesium glycinate is the form that is known to be best absorbed but malate is good for fibro symptoms.
Everyone has to experiment and find what works best for them. A combo of both works very well for some.
For me there was nothing that could match an IM shot.
Sorry to change the subject.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I'm in my 4th month on Levaquin. I have a little bit of tightness in my tendons. I am not doing any exercise or anything that might make it worse.
As far as pulsing, I stopped my Levaquin for a few days to see if my stiffness would go away. Very quickly, I felt very bad. My symptoms have always been pretty mild even pre-abx, but I was feeling pretty sick without the Levaquin. I was only off for 4 or 5 days. When I started it back up, I felt much better the next day. So I don't think pulsing would work for me, anyway.
Good luck with this.
Posts: 984 | From US | Registered: Dec 2007
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seekhelp
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Member # 15067
posted
I'm so disappointed to hear even the best doctor in the country as a LLMD couldn't turn you around. I keep looking for great stories about him and how this LLMD's pummeling with high dose Abx gave people their lives back, but either I'm missing the success stories or Lyme is pretty unbeatable.
I viewed this LLMD as my last hope.
I really hope the Levaquin helps you a ton Metallic Blue. You deserve it. I'd seriously consider rifing too as you mentioned in another thread. Why not?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I took Levaquin for 7 days and suddenly could not feel my legs or feet....that was the end of that for me.
I also take magnesium glycinate.....my integrative doc said it is the best absorbed of all the magnesiums. The brand I take is made by Klaire Labs.
Good luck Metallic.....I think of you often.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hoosiers, this was about 5 years ago. All I can tell you is that in my notes of that visit when the doc put me on Levaquin, I wrote "stop magnesium."
So, for some reason the doc did not want me taking magnesium while on Levaquin.
I have read others on this board say that it does interfere with the effectiveness of the Levaquin, but I have never seen it in Burrascano.
My doc has written a book on lyme disease. Perhaps he explains this in his book. Dr. S. in Maryland. If you have the book, you could look and see.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Abxnomore,
Thanks for the info.
TF,
I do have that book, so I'll check what Dr. S said. Good idea, thanks.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I believe they suggest holding off on the magnesium because of the bio-film. From memory, Dr. F says that the bartonella or BLO, or whatever it is, protects itself in a bio-film composed largely of magnesium. I have no idea if this is true or not.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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WildCondor
Unregistered
posted
I took magnesium the entire time I was on levaquin (3 months for bartonella) and I had no problems. The second time I took it, I did get the tendinitis even with magnesium. Just watch out for it, but otherwise carry on with a smile.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
WC, are you a good detoxifier? I've wondered as you were able to take incredible doses compared to most here. Did you do the genetic testing? Or maybe you were one tough SOB. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I made good progress on it. Took it for 3 months. Felt absolutely the worst I ever felt the first six weeks on it, but when that lifted I made great progress. Really cleared my head and lifted the fatigue as well as the brain fog.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I am a little concerned about going this alone. I know I can do it, but I feel so naive thinking that I know better than my physician (who as someone pointed out is one of the best in the world).
To have him "poo poo" Rife, and to tell me to avoid the only drug that provides "temporary relief" (Tetracycline), is odd to me. I just can't see going on IV antibiotics and turning into another non-responder, or....I respond and then relapse. I have very little confidence that I would solve the problem going that route. Feeling better is nice and all, but I can't build a life on fragile progress. I've been sick my whole life, so it's gotta be figured out. We know what I've got. We just have to entirely eradicate it!
Does anyone really understand how alone I've been throughout this process? Even under the care of a variety of specialists, I've had to constantly read and educate myself. I've had to constantly bring up information to these very specialists and say "Hey, what about this? Had you considered this too?" It just happens more often than I think is best for me.
I don't like it, and I'm always concerned that I may miss something. Yet, the alternative just doesn't make sense either. So I'm going to make a decision and stick with it, win or lose.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think experimentation is not a bad route to take, just as long as you are very smart about it, and check interactions, etc.
I think we know ourselves better than anyone else (as long as we are thinking clearly, and not making decisions that are purely motivated by fear of "what if's").
I have started meds on my own, and I don't regret it. I wouldn't recommend that for most people, but I studied the interactions and knew what I was getting myself into.
You may not want to cut ties with your current LLMD, if later on you need a pro's perspective on what's going on, but I don't think there is anything wrong with trying things on your own, and going back to your LLMD and saying, "another doctor gave this to me and it worked."
Posts: 4590 | From Midwest | Registered: Jun 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Mike. I so relate to you. Where to turn, what to believe, what to try, what to do, what not to do?
Its very lonely. And very frustrating.
I see one doc who tells me to take one thing and other who says no no not that.
One says this is necessary and the other say not its not.
One says rife is great and the other laughs.
We just have to find our own path. Since my mother has gotten cancer and has all the same stories i have I realize it is not just Lyme. Many diseases... have this same dynamic.
She is so torn and between doctors and advice. Its seems so unfair. Once she chooses a route and feels good about it and then hears from someone else how its a mistake. blah blah.
Myself > I felt IV was worth a short after 10 years of orals. I also am adding Rife and other alternatives to it. And well. i feel good about it. Not all I share my protocol do say its a good one. So well? You got to go with what you believe in.
I was in my clinic room getting infused and a man and his wife next to me. She has cancer for the 3rd time and now they say she is positive for Lyme. They talked about their path of treatments from this and that.
Then the man said. 50 percent of whether a treatment will work is based on whether you yourself believes it will.
That was what I felt a great thought. i do not believe it is 100 percent and he brought it to a place that made sense.
So go with what you believe and then bring along anyone and everyone that will can can support you and pray for you and hug you. That support is so huge too..
I am sure you know all this. your one of the smartest people I have come across here.
I hope you find the path that works for you.
My last oral med by the way was a Combo Tetracyline EDTA compound. Maybe that will be something you can ask about. It is a formula Dr. F came up with. I only was on it for a month before I went to IV Flagyl and Zith and I can not take Tetracyline with Flagyl so I have it in my drawer and want to go back to it sometime.
I also want to say. That the IV medication and treamtent feels so different than orals. It feels like it goes right to the infection and does not put that tax on your system like orals. I am able to tolerate WAY larger dosages and I can recoup from the herxing like I hear our supposed to!.
It feels so much better and so much more right to me. Now yes I have heard of relapses. But maybe a good plan for after care and or transition from IV back to oral and other supports to continue forward would make the difference. That is my plan.
Sadly the flu hit me right when I was feeling like I was done with the herxing and starting to feel openings and improvements that I was getting excited about. But I am keeping the hope that this flu .. swine is not as bad as the normal flue that was the culprit to my 1 and only relaspse back in Jan 08.
So trying to stay positive and I have followed your thread and can so relate.
I said the same thing when I made my last choice and said. I am sticking to it whatever the outcome I accept it before hand. That let go of a lot of anxiety or pressure or worry.
So .. we all know not all things work and that different things work for different people.
So we got to keep trying... There is timing too and cycles and all sorts of variables that we can not control.. I find that sometimes one thing did nothing for me a year ago and when I try it again it helps a ton. So i never rule out trying the same thing and I never get rid of or throw stuff out so I can come back if the time is right.
I am by no means better.. and I might be sounding all upbeat and positive. Which most the time I am screaming in frustrating. and sometimes even thinking of ending it all. But I am here and I am still fighting day by day.
Hang in there..
I support you in whatever choice you make and what you think will work for you..
The doctors . well? Well. We all know that story. They are there to supply us and help us but sometimes they are not supporting us when we veer off the path they choose for us. I have had that experience lately and now that I have to change doctors or add a new doctor becuase my old doctor can not prescribe IVs ..I am treated somewhat differently. But hey.I got to stand by my choice and just keep going...
..........
You know like the energizer bunny..: )
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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WildCondor
Unregistered
posted
quote:Originally posted by seekhelp: WC, are you a good detoxifier? I've wondered as you were able to take incredible doses compared to most here. Did you do the genetic testing? Or maybe you were one tough SOB. lol.
I told my LLMD to give me everything in the arsenal and that I wanted to blast the ^&#$ out of my Lyme disease. I took appropriate doses, nothing incredible, just necessary. I herxed very hard and never backed off of anything. I fought through it all and came out smiling on the other side. I am glad I did what I did and I was and am a very determined person. A gentle approach was not right for me, and in my opinion, is not right for Lyme treatment overall. These are serious infections and they need to be treated aggressively. Far to many people on here are being under treated and that is why they are not getting better. Doses are inadequate, or combination therapy is not used. Being tough definitely helps! You have to fight this like a warrior!!
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posted
Mike, are you still on the Levaquin and if so how are you doing?
My LLMD wants me to try this one more time so I am back on and started it today with the Flagyl but I am having a very severe reaction to it.
I feel like I am hallucinating and having a bad trip......Not sure what to do at this point but to ride it out.
Why am I having such a hard time with this ABX? Anyone else relate?
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm about 4 days into the Levaquin. I'm taking about 600mg of a variety of Magnesium as well as probiotics and Nystatin as part of the treatment.
If you're having side effects from the Flagyl, try reducing the dose and perhaps pulsing the drug every other day to get used to it.
Starting too quick usually causes these side effects in those prone to side effects.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I liked Levaquin. I did notice achilles' tenderness but never stopped my daily routine. If you notice unusual soreness just don't press too hard with workouts or other activities. Good luck.
Any slight tendon issues will go away anyway once you stop treatment for a sufficient period. Just don't press or you'll risk tendon rupture...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I actually like Flagyl and took it almost a full year before going off 6 months ago. Its the Levaquin that concerns me.....I just started it today only one dose and it hit me within 1/2 hour. WOW.
I do feel a bit better as far as the panic attacks but now my legs are not moving too well. They are super heavy and feel like they could buckle when I try to walk.
Good luck Mike and hope it works for you. I think you and I have the same symptoms and also been having a hard time with coinfections. Did you start the Levaquin full force or start out slow?
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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posted
If anyone is interested, I was on Levaquin for a bacterial infection (not lyme related) for 10 days in Feb of '08. I had no side effects (but I have yet to have any problems with any abx).
However, at the end of the course, I was amazed at how good I felt and how much energy I had. I was weight lifting and running with enthusiasm that I hadn't had in a long time. More than just knocking out that infection should have given me.
I believe that the Lev worked on something else, I assumed lyme. This helped confirm for me that my lyme was a problem and I needed to see a LLMD.
Posts: 872 | From New York City | Registered: Jun 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I was told Levaquin doesn't work on Lyme Disease? I am still not clear on this issue as I've heard different opinions.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
My LLMD said that Levaquin will not work on the lyme bacteria but is very good with Bartonella. That is why he has me on Flagyl also.
Ok ~ a little update on what happened yesterday and I need your thoughts.
I took the Flagyl at 7am, Levaquin at 10am and then by 10:30am I had some very awful side effects. I thought I was on a drug trip and could barely function. I was paranoid, anxious and having panic attacks. I was excessively thirsty and started choking.
I finally calmed myself down and took a 4 hour nap that I have not done in a year at least.
After I woke up I felt so much better and was able to function in the evening but my legs were heavy and a bit sore, like I walked all day in bad shoes. I also had a cold sweat last night like I broke a fever.
I then went to bed around 9pm and slept 10 hours straight with no waking at all - totally unheard of.
So not sure this was a reaction to the Levaquin or a herx? Thoughts?
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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I know that Lev works on Bart, I thought it worked on lyme too. My LLMD suggested I could go on it if the Omnicef wasn't working.
But I could be mistaken. I'll have to look that up for sure.
Anyway, the Lev suuuuure made me feel great in only 10 days! My LLMD suspected that I have Bart, but the tests do not bare this out. Maybe the bart got killed off from treating the lyme and babs.
James
Posts: 872 | From New York City | Registered: Jun 2008
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I keep looking for great stories about him and how this LLMD's pummeling with high dose Abx gave people their lives back, but either I'm missing the success stories or Lyme is pretty unbeatable. ![[Wink]](wink.gif)
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